Ethan's World

Big Boy Eyewear

2012-01-12T09:56:00.000-08:00

For 6 years, Ethan has been wearing glasses that have earpieces that wrap around the back of his ears. They're a great option for active little boys, but the time has come to move on to a frame that doesn't encourage him to pull both arms out to the side as far as they'll go.

Ethan has historically dealt with his frustration by ripping off his glasses and throwing them. Luckily, he's only stepped on them once and it was done accidentally. His frames have always been metal and though they've been flexible, we've spent a lot of time in the optical store getting them adjusted. We're hoping that the plastic pair will take just as good a beating, but not require so many trips to the "glasses store". He needs to learn the correct way of putting them on and removing them, so I put together a power point presentation that highlights little kids with 2 hands at the temples as they carefully handle their glasses. We'll see if it helps.

In the meantime, he's aged by about 5 years in this new pair.

New Year, New Ear!

2012-01-03T11:03:00.000-08:00

2 days post surgery, eating a favorite snack

If you've followed Ethan's story online or in person, then you realize that he has suffered for 2 years with a faulty implant. The issue was further complicated by a lousy rep from Cochlear Corp. (who has been replaced with someone professional) and a mostly non-verbal little guy who lacks the ability to communicate his experience via the traditional/typical routes. We've been saying his implant doesn't work (and he has refused to wear it) since 2009. Finally it has been removed and a new device put in its place. He came through the surgery and recovery with flying colors and in a few short weeks the new Ci will be activated and we'll be on our way. There's a lot more to say about the ramifications of the experience on Ethan's psyche and progress, but it doesn't feel productive in the least to go into that detail.

Since my last post here, we've also found out that Ethan has qualified for a grant for a service dog! He will get his dog in August 2012 and it will be both a hearing ear dog and an autism dog. The dog will be trained in search and rescue, so if Ethan ever got away from us (as he tries so diligently to do), the dog would be able to track his scent and help us find him quickly. He can also be tethered to the dog in public so that we would be able to go places and walk normally, rather than hold onto Ethan with the death grip to keep him from running away. The way we've had to function has prohibited me from signing with him in public because my hands are too busy keeping him safe. The way in which this dog will change our lives is far reaching and I'm still not sure it has totally sunk in for me yet. That we might feel less like prisoners to his autism and more like an average family who enjoy outings together is just a dream come true.

Ethan continues to do well in school. He is in the same classroom with the same staff as last year and they never cease to amaze with their skill set, compassion, communication skills, and general awesomeness. He definitely presents them with challenges, but they don't seemed phased by it and always have a method or idea to deal with his antics. I've heard there is a little girl who plays with him during recess each day and who likes to walk into the building holding his hand. We're not really seeing anything playmate-wise translate beyond the school walls, but hopefully that will come with time, and a little extra effort on my part to make it happen.

I was diagnosed with breast cancer (early stages) in July and had a double mastectomy in October. I have surgery again (reconstruction) in February and am on my way to a full recovery. I am very lucky to have caught it so early and to have so many wonderful friends, neighbors, and family members who have come to my side for support.

We're all really hoping that 2012 presents us with fewer challenges!

Ethan's First Vacation

2011-07-13T07:25:00.000-07:00

Ethan at the beach with dad and mom

Our little threesome reached a new milestone this summer, our first family vacation! We've been looking forward to Ethan's first trip to the beach for years and this summer seemed like the right time. This trip was made even more special (and possible!) because many of our extended family members decided to join us. We rented a 4 bedroom house walking distance from the beach in Hilton Head Island. We had a very spacious kitchen and living area and a nice deck with table and chairs. The house came with bicycles as well, so there was always something to do. Ethan was over the moon with his aunt and uncles, his cousins, and grandparents all along for the fun.

Ethan continues to wear his left Ci and is steadily making progress with speech and responding to sounds again. He is enjoying summer school and has been going to the occasional appointment at the hospital as well as the neighborhood pool with mom. In August we'll travel to see his other set of grandparents and stop to visit with our friends on the way down and back.

Two areas where Ethan has been making huge strides lately are with eating and playing. He has always had a tough time with food (acid reflux, sensory issues, oral motor delays) and his autism has impacted his ability to really enjoy toys and the act of play. Lately we're seeing some neat imaginative play happening as well as a new interest in trying different foods. In fact, we hit another milestone with him recently when we were able to order him a meal from a menu (in a Lebanese restaurant of all places!) and watch him enjoy eating it. You can bet we'll become regulars at that place!

He has also made incredible strides in recent weeks with cochlear implant mapping sessions. Our amazing SLP and audiologist put their heads together and thought that maybe if we tried a mapping session in a new environment (during a speech session), that it would help Ethan relax and participate in the process. He has bad associations with the audiology clinic now and that has been a big part of the problem apparently. He still doesn't like the mapping process, not even close, but he is finally allowing our audiologist to take measurements without flipping over tables or head-banging during the course of the session.

We are also working with an in-home ABA consultant to help with behavior issues. We have a long way to go, but we're slowly making progress in a number of areas here as well.

I remain hopeful.

He Hears!

2011-04-11T17:07:00.000-07:00

Wearing his left processor and hearing again!

Heading out the door for school.

Great news! Ethan is hearing again! He's not necessarily showing evidence of hearing in day to day situations, like looking at you when you say his name, or even when you say something like "ice cream", which at one time would have elicited a huge response. He tested well in the booth though (down to 30 db) and is showing an interest in saying new words on occasion. He's not "talking", but now and then he'll attempt a word out of the blue and it takes us totally by surprise. It's basically like starting over. He was deaf for over 9 months, so I think he's rediscovering what sounds things make and what meaning is attached to the sounds of certain words. We are obviously still signing everything to him and he visibly understands us once we add the sign to the verbal message. The sign is definitely helping him attach meaning to what he is hearing, so it's a good thing he has such a solid ASL background.

Testing revealed that his right cochlear implant is no longer a functioning device. When the surgeon and audiologist left the OR to give me this news, the first thing I said was "that's great news!"....to which I think they agreed. We've had no idea why he was so adverse to wearing his processors and previous tests had indicated that there were issues with the right side, but the company that made his devices (Cochlear) told us that it passed the integrity test. That test yielded more questions than results and I was sorely disappointed with their assessment and lack of concern afterwards. We're talking about a patient who is nonverbal and basically unable to communicate when he's in pain, where it is coming from, etc. So our best guess is that he generalized the sensations of the failing right device to the left side as well and was fearful of wearing it, even though the left side has proven itself to be in textbook working condition.

With months of patience and the help of a team of autism professionals, we finally got him to wear the left ear again. The mapping process has not been going smoothly and our audiologist has had to resort to unconventional methods to create new maps since Ethan is completely uncooperative. The poor little guy has extreme anxiety around this process, undoubtedly the residual trauma from having the right side go down.

We're still not clear about what we'll do next. The team at Children's would like to see some cooperation during mapping sessions before they can commit to re-implanting the right side. That's completely rational, so we just have to keep working at reducing his fear of the process and hope that we continue to make progress, even if it's only in baby steps.

2010 - You won't really be missed.

2010-12-17T12:11:00.000-08:00

Every time I sit down to write an update here, I struggle because A.) There are so many things to say and I don't know where to begin and B.) Most of what is on my mind has to do with how difficult life has been parenting this beautiful boy lately. It's hard to write about how things are going sometimes without feeling like I'm turning this into a place to just vent negative emotions and experiences. But the reality I guess is that parenting a child with these issues just isn't easy, and putting a sugar coating on the daily grind is next to impossible.

The great news is that Ethan is doing tremendously well in school. I continue to pinch myself daily - it's feels too good to be true. He has had a few minor behavior problems there, but they put a plan into action immediately and he seems to have responded well. He has been riding the bus for a few weeks and literally squeals gleefully each time he steps foot on the bus each day. He absolutely loves it and I've got to admit, the extra hour it buys me each day has been pretty amazing as well.

His behavior at home continues to worsen and I'm completely perplexed. He is fairly aggressive and has been hitting/kicking me on a regular basis, as well as showing some self-injurious behaviors like head banging. I've not found a way to get the upper hand in this house and it's starting to really wear me down in every way possible. In January he'll have a multi-disciplinary team meeting with the center for autism at our children's hospital and I've heard they offer a positive parenting practices class for parents who struggle with these problems. It feels good at least to know that I'm not alone.

Ethan hasn't worn his cochlear implants for months, since late June to be exact. I'm trying to keep up with the sign language, but I've got to admit that I've been feeling really overwhelmed lately and haven't done the best job in that department. I've been daydreaming about going back to school in the interpreter program and eventually becoming a licensed ASL interpreter. It would take years, but I've got to become fluent and why not turn it into a career option while I'm at it?

Ethan's dad is coming home for 17 days straight (a record I think), so we're really looking forward to having him around for the holidays and beyond.

Happy Holidays everyone!

School Boy

2010-09-26T17:33:00.000-07:00

Walking into school on the first day of kindergarten.

There's my 5 year old looking much more like a 15 year old as he struts his way into his new school for the first day. It's unbelievable.

We were concerned about the switch to public school from private deaf school, but fortunately for Ethan, the change has been nothing but positive. Glowing, even. I never would have dreamed we'd be in this position and be so happy about it, but we have certainly stumbled into the right school district.

He's in a social communication classroom for K-1 with a total of 7 students that rotate in and out of the room throughout the day. There is a phenomenal teacher, 2 aides, an OT, an SLP and Ethan has his own interpreter, plus he gets 2 hours of one to one each week with a hearing impaired teacher. His signing has taken off since starting school, so the one on one language input he gets from his interpreter is making a huge impact. He has quickly transferred what he's doing in the classroom to his life at home. For example, the other day he signed "Where's dad?" - which is the first time in his life that he's asked a question. The interpreter has been teaching him the names of the other children (they all have sign names now) and asking Ethan "Where is" questions to help him remember all the new names and faces. I think at the deaf school he was just surrounded by sign, now he's immersed in it with the one on one interpreter. He also seems to understand that she is his "voice". She told me that they were on the playground during recess (which he experiences with a mainstream kindergarten class) and he wanted to swing. A little girl was swinging and Ethan looked at his interpreter and signed "my turn". So the interpreter told the girl that Ethan would like a turn and the girl immediately hopped off and he got to swing. Last year he would have just hit the child, now he is communicating to his interpreter.

I also recently got my very first, unsolicited "I love you mom" in sign. He hugged and kissed me and told me 3 times in a row that he loves me. I am melting just writing about it.

His classroom is set up entirely around the ideas of what works with children who have an autism diagnosis. If you're interested in specifics, it's based on TEACCH. The goal is for the children to slowly and deliberately move their activities from this contained classroom to their mainstream classroom. For instance, they have the same language arts learning centers as their homeroom class with the hopes that they will learn to become independent enough at each center to join their homeroom for that activity. Each child goes to the library and recess and other specials with their "typical peers", and ideally they will be able to join them in other activities as the year progresses. It's pretty much exactly what Ethan needs and he seems to be thriving there. He absolutely loves going to school each day and runs to hug his interpreter when she greets him in the lobby. It's heartwarming, to say the least.

Ethan still isn't wearing his cochlear implants. He continues to say many of the words he signs and is still very motivated to speak, which I'm thankful for. His developmental specialist recommended we try risperdol to help "take the edge off" so to speak. He spent most of the summer in a foul mood and had several tantrums per day, some of them reaching levels that really scared me. He was even banging his head on glass doors and windows at one point. That's what made me realize that I needed to put my fear of risperdol aside and we needed to give it a try. Since then, he's literally a different child. He no longer loses control 50 times per day. He is finally able to show an ability to reason and to understand cause and effect. He is making huge strides in language. He is happy. He is doing well in school and not hitting the other children. It's really a game changer.

We'll be attempting to turn his ears on again soon and I'm trying not to get my hopes up too high. None of us know what it's like to be in that little body with a nervous system working against you and a whole host of sensory issues. As always, following his lead is the only course that feels acceptable, even if it's not what we had planned.

Changing the Outcome

2010-08-11T18:48:00.002-07:00

This is what I put over at Hopeful Parents this month.

“Changing the Outcome” is the tagline that appears under the logo for our children’s hospital and until recently, it was just a cool and catchy phrase that didn’t hold much personal meaning for our family. Then something unexpected and totally awesome happened.

A friend reached out and encouraged me to become a part of the family advisory council at our children’s hospital. I attended meetings. I listened and learned and my experience as a parent of a special needs child wasn’t just valued, it was sought after and respected.

One evening we listened to a presentation about a training event for the customer service representatives that staff the registration desks all over the hospital clinics. They were role-playing interactions with tough customers: parents who were stressed out and a little less than kind during the registration process.

I asked if they had ever trained their staff to deal with difficult situations that arise with children, rather than parents. I cited an exchange my son had with a customer rep in which he climbed over her desk, cleared it of its contents, and threw his snack in her face. (Autism can be a bitch.) I explained that perhaps some sensitivity training might be in order; these wonderful people need to be prepared and feel better equipped to respond in such situations.

And the craziest thing happened! The very next day, a committee began to form with the goal of developing a mandatory training for all customer service reps. The training would be titled “Supporting Patients with Autism and Other Developmental and Behavioral Challenges During the Registration Process.” Not only did they include me on the development team; I was also asked to open the training by sharing my experiences raising a child with emotional and behavioral challenges. I talked about the issues we face and how they are magnified by anxiety and the sensory experiences of the hospital environment.

Anyone could see that the participants weren’t thrilled to be there since the training took place at the end of a long workday. Even with food and beverages provided, people grumbled about the need for such an event. They had their minds on the happenings of the day, getting home, making dinner, and any of a million other things.

Early in the presentation a slide appeared on screen with Ethan’s picture and the caption “Why We’re Here.” I stood up and very nervously introduced the audience to my little guy and his many challenges. I told them why their jobs made such a difference to us and how their patience and understanding paved the way for my son and I both to have a tolerable experience, sometimes a downright good one. We spend a lot of time in that hospital and sometimes the time spent registering and waiting for an appointment is more stressful than the actual appointment itself.

I was later told that Ethan’s story, and my experiences as his mother, was very touching and brought several people to tears. I think Ethan inspires people to be the best they can be at whatever it is that they do, and this was certainly no exception. I hope that they also walked away with a new found sense of confidence in their own abilities to relate to children and their families as well.

I got to take what has been a very difficult and sometimes painful set of experiences over the past few years and turn them into something meaningful that will hopefully open others hearts and minds to what so many of our families live with – regardless of our child’s abilities or diagnosis.

Aloha!

2010-07-23T10:32:00.000-07:00

This is Rich and I enjoying a relaxing morning in Honolulu, Hawaii. He had to go there for work and I tagged along compliments of frequent flyer mileage. You can't beat a paid vacation with free travel and hotel! It was absolutely gorgeous! Having time off in paradise is about as good as good gets. (Thanks Grandma's and Grandpa's!)

Ethan has been attending a summer program at the center for autism at our Children's Hospital and that has been going pretty well. He is one of 3 kids in the class with 3 teachers, so he gets one on one the entire time and is doing really well as a result. They are using his IEP goals to direct his learning all in an effort to ensure that he doesn't lose skills over the summer. That is a huge concern for many kids on the autism spectrum, but Ethan is showing some strengths here. His teacher recently said "He's the smartest 4 year old I've ever seen!", which was so nice to hear since so much of what I hear about are his areas that are weak and need more work and attention. Plus, the psychologist who diagnosed him with autism also did an IQ test (which I would not recommend to anyone) and the news was very grim. It took me weeks to rebound from that experience and now here we are, having our instincts validated by educational professionals. I could rant on and on about the IQ stuff, but it's useless. The bottom line (for me anyway) is that you can't get an accurate IQ on an autistic child. Period. Throw deafness in the mix and you're really wasting your time.

He has also been refusing to wear his implants for about 4 weeks now, he gets incredibly anxious and upset if you attempt to turn them on. He's wearing them in the off position, and he makes sure they aren't on before you place them on his ears. I'm not sure what this is all about, but there is little we can do other than follow his lead. I'm so glad he has such a robust background in ASL and that I am also able to sign just about anything I need to say to him. Those 2 years in a deaf school gave us both a solid foundation. He is going to start using an interpreter in his summer program next week, so we'll see how that goes. I think he is too young to understand that an interpreter is talking for someone else, but this is the type of setting and atmosphere where I think they have the space to be creative and make it work.

I've been working on a committee at our Children's Hospital to develop a training for the customer service reps. A few months ago, I suggested to our family advisory council that these reps could use some sensitivity training on how to deal with patients and families living with developmental disabilities - autism in particular. They took it to heart and now there is a mandatory training happening that I helped design. I'll be opening the session with a speech about the challenges in raising a child with autism and the difficulties of going to appointments at the hospital. It has been so rewarding to be able to put my experiences to work in a way that will hopefully change things for other families in our position in the future. I have also really enjoyed the time out of the role of mom and in the role of adult person with a contribution to make to society. Maybe there will be a job in this for me someday!

We're really looking forward to Ethan starting his new school and he'll also be involved in hippotherapy in the fall as well. That means he'll be riding horses with an occupational and physical therapist guiding him. It's supposed to work on strength (core and limb) and the program they have in place for autistic children has been known to really help these kids.

So even with a couple of setbacks in motion, I can't help but look forward to the days and weeks to come. I have that trip to Hawaii to thank for that.

Finding Acceptance

2010-06-11T19:17:00.000-07:00

Whenever I discuss Ethan’s autism with friends and family, the conversation usually centers on how he is sleeping (or not), or what progress he is making in one of his therapies. We might also talk about milestones he has reached, but until recently, I’d never discussed my hopes for his future.

I was catching up with an old friend and she wondered what I hoped and dreamt for Ethan’s future. I had a surprisingly difficult time answering that question and our conversation made me realize how much I avoid thinking about the future. Of course, I hope most of all for his happiness, but I hadn’t really thought beyond that.

It’s much easier to envision hopes and dreams for myself. More than anything, I hope to join the ranks of those parenting special needs children who have found peaceful acceptance of their child’s condition. I’ve felt it before, but it was brief, fleeting. About one year after we learned of Ethan’s deafness, I embraced the beauty that is American Sign Language and felt a sense of pride that my little boy could be part of the deaf community. It seemed like less of a disability and more like an opportunity, a membership to an extraordinary and mysterious culture. That’s what helped me cope with the notion that he may never hear or speak.

I’m not sure where to look, or how to find this same source of acceptance with his newest diagnosis. Rather than celebrating his difference, the activities and therapies we do now seem more like a rejection of who he is and who he’s becoming. It’s just a matter of perception, really. So how do I change this mindset?

For now, I stay focused on the blessings in our lives, and I think that’s pretty effective for the most part. I look at all the compassionate people that work with Ethan and the friends and family who “have our backs”. I thank God for our health, that Ethan is alive and healthy, that we have a roof over our heads, and food on our table.

What else can I do?

Ethan rocks.

2010-05-07T19:27:00.000-07:00

I just can't believe how big this kid is getting! He practically looks like a 10 year old in this shot and he's still a few months away from 5.

We had the pleasure today of going to the "glasses store" to pick out a new pair of frames for the big boy. He has steadily been outgrowing this pair even though he's only had them since July. It doesn't matter; they're lost somewhere outside anyway in what my mom has called the "glasses cemetery". Experience has taught me that they won't likely be found, so why put off the inevitable? If we find them, he'll have a nice back-up pair for emergencies.

Ethan has been enjoying a social communication group therapy at our children's hospital. It's a group of 5 children who are all about the same age and all have a need for social communication intervention. Some of the kids are apraxic, some are autistic, and one or two seem not to carry a diagnosis but fit in without that distinction. The group meets every Friday morning for 1.5 hours and is run by 2 therapists who have created a highly structured environment that challenges the kids to learn to interact by way of sharing, waiting their turn, taking turns, etc. He did really poorly the first week, but the weekly report just keeps getting better and better. Last week he approached a child and said and signed "my turn play phone". We were all totally floored. Today he approached a little girl and said "share". She ignored him so he then went on to say and sign "I want book please". When she continued to ignore him he decided to bang his head on a table, then he was fine.

I don't get to watch this therapy, which is good and bad. It's kind of cool to sit in the waiting room with a book and get some much needed down time. On the other hand, he's kicking butt and taking names in there and I'm missing it!

We have met with the public school and will have one more meeting to firm up the IEP details. They're terrific. They're brainstorming ways to get some sign language into the room for him since we all agreed that an interpreter is inappropriate. For starters, he simply doesn't have the attention that an interpreter would require, and it's also incredibly abstract for a little guy his age to understand that an interpreter is talking for someone else. This is especially true for him since he can hear! And the autism piece makes it even more complex.

Regardless of how we address the need for sign language in his classroom, I'm really convinced that this move is going to be terrific for him.

Changes...Again.

2010-04-13T08:06:00.000-07:00

As you can see from this photo, Ethan had a great time over spring break. We drove down to Virginia to see my family and spent the night in a hotel along the way. Ethan was pretty excited about the whole affair and was generally really well behaved and manageable.

We've been planning his transition to kindergarten next year and it has sure been a roller coaster ride. His school for the deaf (the one we moved here for) basically announced in a meeting that they don't feel equipped to manage his needs next year. They will take him back, but they encouraged us to look at the public school option.

This sort of took my breath away. It seems like a huge paradigm shift for them, since I remember being told that they never turn a deaf child away. They aren't exactly turning him away, but gently nudging him through the door.

I applaud their honesty actually. I agree; they aren't equipped to deal with him or his behavior. They don't have expertise or experience in bringing methodology that works for autistic children into their classrooms.

So we have been looking into the public early childhood school and as it turns out, they practically have a tailor made program for him to walk into. The only thing that this program is lacking is sign language. We'll have to ask for an interpreter/aide for him, but the class is focused on social communication skills and is staffed by a teacher, SLP, and OT who all have become experienced and well versed in reaching and teaching autistic children. Ethan is doing really well academically, he tested at a 1st grade level at age 4, so we're not worried about the focus going towards the social communication stuff since that's where he is severely lacking.

The school is only a 4 minute drive and the staff that I've been meeting with are all tremendously professional and compassionate. I had a particularly tough time in one meeting recently and one of them stayed afterwards and gave me a huge hug with tears in her eyes. They get it and they care and that's more than I could ever ask for.

We're excited about the change! I did have a really weird dream yesterday about his teachers turning into shape-shifters, but I think it's normal for me to have some level of subconscious uncertainty. But even with some underlying anxiety, this just feels right.

Hearing / Implant Update

2010-03-22T18:08:00.000-07:00

(I know this is blurry, be he never stops moving!)

There's no shortage of material regarding Ethan's world lately, but it has been hard to speak or write in clear sentences with the lack of sleep that continues to plague this house. We're back on clonidine, if that tells you anything. As tired as I feel, I want to provide an update on the hearing issues we've been through.

Regarding Ethan’s implants: We still have questions, but the great news is that he is again hearing and does not need to have surgery.

He’s not up to previous levels on the troublesome side (right side, first side to be implanted) and we still don’t have a complete picture of what is going on with that implant. This is because he is totally unpredictable at mapping sessions and has been fully cooperative only once out of 4 visits. We had to actually sedate him to learn that the ball joint (a ground electrode in the array) on the right side is not working. This is not uncommon and many people function well with one of these electrodes (there are 2 ground electrodes) missing, but we’re wondering if this is what is causing the strange reading they got on 5 other electrodes on the array. Ethan has had trouble in the past with this implant and had to have a few electrodes turned off even though the device passed the integrity test. After a few weeks of shorting out, those same electrodes mysteriously began working without fail. Maybe this problem will right itself with time as well.

Ethan spent about 2 months in total silence. It was pretty interesting to see how he changed in deafness, then see his response to hearing again. One would expect a child who has been hearing 3 out of their 4 years on the planet to be very disturbed by plunging into deafness for 8 weeks, but not Ethan. He really seemed not to notice or care. His behavior at school improved noticeably when he was totally deaf. He stopped hitting the kids in his class and was generally much more mellow but withdrawn. He also stopped verbalizing and dancing and wasn’t using sign language in nearly the frequency we expected or hoped. We know he has an enormous capacity for understanding sign language and the memory and ability to actually sign hundreds of words, but his hands were as quiet as his voice. I think this is autism. It impacts a child’s ability to express themselves in ANY language.

Once he began hearing again it was as if we saw a little bounce in his step. He became more engaged in his surroundings and immediately took to listening to his favorite music while singing (in his own way) along. He started trying to speak again and the signing has increased (marginally) as well. But so has the hitting at school.

It’s hard to find information on how deafness and autism interact since it’s such a rare dual diagnosis. Some of the research I’ve found suggests that this population is better off left in deafness, meaning no hearing aids, implants, or amplification of any sort. It makes sense when you think about the difficulties that some autistic people experience with sensory input - sound in particular. Luckily for Ethan he can take his processors off and live in silence if that is more comfortable. Right now that’s not happening, he’s happy to have his ears on. The fact that he’ll have some control over auditory input might turn out to be an advantage, so no regrets here.

If I regret anything, it’s the amount of time that I spend (especially as of late) worrying about him and stressing out over his diagnosis. It’s still sinking in and probably will be for years to come.

In case you're interested...

2010-02-12T11:23:00.000-08:00

I'm at Hopeful Parents today, trying not to rant about the day we were given Ethan's latest diagnosis of autism. We're all sick here, especially Ethan, so I'll write an update as soon as we're back on our feet. The short version is that we've got him started hearing again (although not up to previous levels) on the left side and the ride side might need to be taken out and a new device put in its place.

2010 - Here we come.

2010-01-18T11:38:00.000-08:00

These are pictures of Ethan while we were visiting with his aunts and uncles and cousins over the holidays. He rarely sees them during the year, so I made a poster with all their pictures and names on it and we looked at it and discussed it before the big day. We were the last to arrive and within the first few minutes Ethan walked around the room full of people and pointed to each person while saying their name. He was proud and excited. And, as you can see from the pictures, he really had a good time. It looks like we've got a karaoke natural in the family!

Ethan missed almost 2 weeks of school following the holiday break. We're not sure why (since he can't tell us), but he spent about a week and a half not really sleeping. He'd sleep a little in the evening, then be up at 11 for the remainder of the night. It didn't make for a good day at school (for Ethan or his teachers), so we kept him home and endured the long cold days with our grumpy boy.

On January 1st, Ethan's cochlear implants suddenly stopped working. He had been playing in his swing and the hair on his head was standing up all over. We're sure it was static that shut them down. I went upstairs to get his back up processors and realized that we had problems with them as well. One was broken from a tantrum and the other contained outdated programming. Then we spent the next 11 days going back and forth with the company trying to get the mapping done and the processors delivered. By the time they arrived and we tried them on Ethan, too much time had passed. He seemed to be in severe discomfort, even though I turned the volume down to #1. After that experience, he has decided that he is incredibly fearful of wearing the processors, even though we have not turned them on. We had an audiology session that was over 2 hours of just trying to get one magnet on his head to run measurements. We failed.

Now we are at least getting him to agree to wear the processors without the batteries. So even though they aren't delivering any sound, he is willing to keep them both on his ears. This feels like a victory and we're hoping that he'll be more open to the next mapping session. I'm just grateful that he has sign language to communicate and that he's in a deaf school setting. He's very happy, with and without his hearing, and that's reason to be grateful as well.

He has also been refusing to take his supplements and we're noticing a huge improvement in his overall mood and behavior. I hope to reintroduce the supplements one by one and see if there is any connection here. There is unfortunately so much going on at once that it's difficult to tell what might be contributing to this new personality. It's like we're seeing glimpses of our little boy coming back to us. He has been so angry and aggressive for so long that we were starting to lose faith.

I've been feeling pretty overwhelmed. There have just been so many meetings and appointments and Ethan has been missing school on top of it all, not to mention Rich is starting to travel again after a 3 week break. Last week I started my ASL class, attended a FAC meeting at the hospital as well as an orientation at the autism clinic, took Ethan to 2 appointments at the hospital and attended his IEP meeting.

The IEP he has is really strong. I left that meeting just feeling stunned by what an amazing team we have assembled for him. He graduated from PT at school because he is now totally mobile within the school environment. His strengths seem to all revolve around academics while his weaknesses center on behavior, communication, and social interaction. I don't take his academic strengths for granted for a moment because I can't even imagine how hard it would be to work on those skills in addition to all the other areas. The fact is, he has been sight reading for over a year and now we're noticing him start to read phonetically. He actually sees words he doesn't recognize and starts sounding them out. It's unreal to watch. I'm so proud of him.

So we march onward with many concerns, but also with profound gratitude for who he is and who he's becoming.

One foot forward.

2009-12-19T11:59:00.000-08:00

I was just going through the archives to sift through and delete some comments, thanks to some Asian sex shop that has somehow ended up using this space for advertisement. I didn't have word verification turned on for the comments, so hopefully by doing so, I'll be able to divert those rude little bots from spitting on my blog.

It seems that I've only been posting here once a month for quite a few months running. It's basically not out of a lack of things to write about, rather a statement of just how stressful and chaotic Ethan's world has been. Our summer was miserable, then he seemed to be doing well in school in September, but has been spiraling downward since October. He is still hitting the children in his classroom and that has been pretty difficult for everyone. We've started working with a child psychologist, but there simply isn't much positive reporting to be done at this time.

Ethan has been diagnosed with autism. November 14 was the magical day that I sat in a small room with a young woman who rattled on about his IQ and all of his other troubling behaviors. It was, and remains to be, very depressing. I have long suspected autism, but somehow hearing it was like a sucker punch to the nose, then the gut, then the groin...

So anyway! I am just letting you all know, that we're having a tough time and thus we aren't really putting much "out there" for now, but I am hopeful that things will turn around and that we'll start making our way back to what was our "normal". Hell, maybe I'll even start taking pictures of Ethan again.

Until then, I should say that we are really looking forward to seeing our families over the holidays and bathing in their love and support as it has carried us to this point and will bring us through whatever is going on now. We have much to be thankful for and we never lose sight of that, even when times are tough.

Happy Holidays.

The wheels keep turning.

2009-11-04T06:32:00.000-08:00

It's crazy how every time I think I'm hitting bottom, Ethan wondrously pulls a new trick from his sleeve. Thank God for that. There is a new teacher in his room and he looked her square in the face and asked "What's your name?" in sign and in speech. He has never done anything like this before and his teacher nearly broke into tears. He hasn't been much for conversation in the past, and he has never asked a question, so this was a pretty momentous occasion!

He has been behaving badly, REALLY badly. Last week he had a day at school where he basically hit every child that he came into contact with. The next day it changed for the worse when he decided to use a fist instead of an open hand. We wondered where he may have seen a fist being used to hit and it occurred to me that ASL is to blame! The sign for hit is to hit your left forefinger with your right fist. Nice, huh.

I can (and HAVE) handled A LOT of tough stuff where Ethan is concerned, but this little development just pushed me over the edge. I've been an unhappy camper and it has been pretty tough on Rich as well.

This isn't uncommon for kids on the autism spectrum. If you're seeing a DAN doctor you'll find out that it's often due to yeast overgrowth or bad bacteria in the gut and that if you treat that issue you'll see the problem significantly reduced. I remember last year when we began working with a DAN doc (Defeat Autism Now), she put him on Nystatin for yeast and within one week his teacher told us that he was a totally different kid at school. Once we shared the news with her, she asked if we could please continue because it appeared to be making a dramatic difference for him in terms of his attention, behavior, and sensory issues.

We're also engaging the GI specialist at Children's at the moment and may be doing some x-rays down the line to see what we can find. His reflux continues to haunt him so it's likely that we'll repeat the endoscopy that Ethan last had in 2006; they'll do a biopsy and check his esophagus for damage. We had a terrible experience with his GI doc 3 years ago (he had his nurse trying to convince me to do a nissen before they even performed a single test), so I went through the ordeal of changing docs and the one we have now is absolutely fantastic. I loved him, loved his staff, and loved the attention to detail that they gave Ethan's case. And to top it all off, they didn't treat me with disrespect for taking my child to a DAN doctor. Wonderful.

Now all we can do is watch and wait and hope that the wild behaviors we're seeing settle down or completely disappear. Either way, he's in good hands.

One Tough Monkey

2009-10-06T09:51:00.000-07:00

I love the juxtaposition of the monkey suit with the serious countenance.

I can't believe how long it has been since my last post here. The weeks have just flown by and at times it feels hard to keep all the wheels in motion. There are so many appointments, so many forms, so much to read and do and think about.

Ethan has been full of surprises lately, some that lift my spirits and some that may lead to the creation of a padded room in the basement, (for me, not him.)

The autism diagnostic process continues, as do the explosive behavior problems that he seems to unleash only on me. Maybe that's a good thing. Maybe it's one of the only typical things about him. Don't all kids save their worst behavior for mom?

He's maneuvering that bike around the driveway like he's been doing it all his life. We spent about 2 years working on teaching that skill. Now he not only pedals, but turns the wheel while continuing to push through the turn...not an easy task when you isolate all the motor skills.

This morning he looked over at the cat eating and said (and signed) "Zola hungry cereal", which is his way of saying the cat named Zola is hungry and she's eating cereal! That's huge huge huge. That's making conversation for one thing, something he simply has not done. It's also putting 3 words together in 2 different languages. Um, WOW!

He has been making notable progress with potty training at home and at school. I don't want to go into the details of this and suffice it to say that progress for him is not the same as you would expect of a typical child his age, but that is beside the point. He is starting to get it! We're hesitant to get too excited about this since his way of moving forward with every new skill is to take a few steps backward in between. It's one of the the most frustrating features of apraxia. After months of therapy you might hear him say a word or make a phonetic sound that you've waited for, only to find out that it's the last time you'll hear it for months more to come. Apraxia really tests the patience of the kids, their families, the teachers, and therapists who work in concert to help slay this beast.

But Ethan's slaying it BIGTIME.

Summer Be Gone!

2009-08-18T10:16:00.000-07:00

Ethan and dad at the zoo.

What a summer!

It has really flown by and I have to say that I couldn't be happier to see it come to an end. I never thought I'd utter those words, but it is what it is. I broke my toe and couldn't exercise, Ethan lost his glasses and waited 2 weeks to get a new pair, and Richard's work kept him away from home most of the summer. In the meantime, Ethan fine-tuned his tantrum-torture-technique while his acid reflux churned up enough to prevent either of us from ever having a good night's sleep.

Now for some good news!

Ethan turned 4 years old yesterday. It was also his first day back to preschool. Big day for a little guy! I made gluten-free casein-free orange creme cupcakes that were a much bigger hit than last year's gfcf carrot cake. Ethan actually opened birthday presents (in previous years he has not had the attention or interest in unwrapping gifts) and seemed to understand that this was a special day. It was pretty cool to see him show an interest in the celebration. It's as if he is starting to make connections where before there were none.

Digging into the birthday cupcake!

I think he likes it!

More, please!

Our summer was also filled with the routine appointments with all of his specialists, as well as the diagnostic process for ASD (autism spectrum disorder). We are only half-way through the process (the waiting list is HUGE) but so far I haven't heard anything surprising. The SLP said she would need to tally scores, but she generally observed several autistic features and also saw many signs that were encouraging. I've noticed that SLP's are usually really good at tempering difficult news with as many positive statements as possible, as if they have a minor in psychology. There are reasons to feel encouraged, but I've got a kid with multiple communication disorders and I've been around long enough to sense straight talk from being "handled" and there is often a good deal of handling going on. I'll take my hard news on the rocks, please.

(I'm telling you, this summer really threw my mental health to the curb!)

I'm looking forward to having Rich home more this fall and hiring a sitter on the weekends so that he and I can get much needed time together. I also start working on the FAC (family advisory council) with Children's soon and will be active this year in a parent support group for children with apraxia. I'm committing to another year of ASL classes as well.

Life moves at lightning speed doesn't it?

ER Boy

2009-07-08T18:57:00.000-07:00

I think I've mentioned that Ethan has been having some temper tantrums lately. Sunday morning he lost mind when he realized that there was no chance that his broken banana could be put back together. I turned my back on him (in part to ignore the behavior) to get his "ears" so I could attempt to talk some sense into him, but it was too late. In a fit of rage he broke a water glass that had been on the kitchen counter. I found him sitting in a puddle of water and broken glass with blood dripping from his wrist. Living 5 minutes from the Children's Hospital ER is about the coolest move we've ever made.

So to keep Ethan happy while we waited for the bleeding to stop, the nurse wheeled in this toy from Child Life that was much like taking a stroll down the isles of Spencer Gifts in the mall. The thing also had a video projector on the very top that projected a rotating image on the wall or ceiling, depending on where you pointed it.

He is fine. He didn't need stitches so they just cleaned it and glued it shut with Derma-bond.

Also related to the Children's Hospital is the news that I will be part of the Family Advisory Council starting this fall. It's a 2 year commitment to attend monthly meetings and do committee work. The FAC has a history of working on meaningful projects with the staff at the hospital and I am really looking forward to being involved and supporting the place that has done so much for our family. Big thanks to my friend Michael for the encouragement!

Pool Boy

2009-06-24T18:47:00.001-07:00

I can't believe how fast time is going, it's almost July 4th and summer will be half over! As hard as that is to swallow, I have to admit that I will like having Ethan back in school in the fall. I'm super spoiled, I know. However, one of my friends has 4 children and her husband spent some time with Ethan and told me that he's really 4 kids wrapped up into 1. Just saying.

Our therapy schedule is really laid back this summer, which is fine by us both. Ethan could use some time to just be a kid and I could use a break from all the shuttling. He really technically should be in all of his therapies once a week, but it's not happening and I've accepted that it's not the end of the world for him to slow it down.

He is doing really well lately. He can now use those pedals, but he usually opts to use his feet on the ground since it's much faster. He does pedal for grandparents though! He is still impossible to reason with on even the most infantile level, and that coupled with his explosive temper has been a real treat lately. Rich is out of town except weekends so I've been hiring a sitter here and there to keep myself sane. Even with the tantrums he continues to make progress and I have to give him credit where it's due. Little guy is one tough cookie.

Not much else to report, we're just kicking back and enjoying our new place during this beautiful season.

Harnessing Happiness

2009-05-28T07:03:00.000-07:00

Ethan is such a happy little guy. He has a sweet little disposition when things are going his way, or when grandma's and grandpa's are around. In so many ways he is just a typical preschooler.

Then there are the ways in which he veers from the "normal" track, and for some reason I'm always sticking my nose (and my whole head) in that part of his business. You'd think by now I'd learn to relax and chill a little bit.

The autistim symptoms Ethan has seem to be on full display these days. He can spend all day just walking around and looking at objects from different points of view. Lately he likes to put a book on the kitchen table and walk all the way around the table while looking at it from the different vantage points. He does this with many of his toys, that or he lines them up. He has also been obsessing over something in the hallway at school and will spend the majority of his day trying to see it and the teacher's are at wits end with him. They can't get him to focus on anything because he just can't stop himself from looking at the beloved object: a motor powered wheel-chair. The obsession is seriously hindering his education at this point. What bewilders all of us is the fact that the cart has been out in the hallway all year and he is just developing the obsession now after all these months.

There are a few more signs of autism that we see pretty consistently, but those I just mentioned are the ones that are most prevalent. He has also started to do a strange eye rolling that looks suspiciously like a seizure of some sort and he has a very high risk of developing seizures. So if it isn't autism I'm worried about it's seizures.

I'm constantly working on finding a mindset that allows me to acknowledge these issues yet somehow manage to just enjoy my child. He'll only be this age once and the time is passing us by so quickly. It's a dance, this living in reality and doing the research and work needed to keep him on track. I have never had the slightest desire to go in denial mode as it does Ethan absolutely no good. So here I am in all my glory it seems, full-on acceptance of that which is real and wondering what I can do about it.

His sleep study looked normal. They primarily looked at his breathing to rule out apnea or any other pulmonary disorders and he's free and clear. Yay for that!

We've been gearing up for summer as next week will be Ethan's last at school. I'm creating social stories and a picture schedule to get us through the days and all the transitions that will surely be part of his new found freedom. I've met with his teacher to discuss the items that he will need to work on over the summer in order to avoid slipping back. He is doing remarkably well in the area of literacy (bordering on hyperlexia, an autistic feature) and number awareness. His fine motor skills are significantly delayed, so that's where we'll spend the bulk of our time. He continues to make progress with gross motor but is still unable to pedal his bike. We're not sure if that is due in part to his cerebral palsy or to limb apraxia. He'll figure it out though and when he does I'll be exchanging the sandals in for a fine pair of running shoes.

Sleep, it does a body good.

2009-05-04T20:25:00.000-07:00

Totally hamming it up.

Ham Central.

Ethan has been getting some sleep lately, the kind of deep sleep that goes a long way towards helping his development. I say this because we've seen some really neat growth in his speech and language and it has coincided rather nicely with his increase in restful sleep.

For instance:

Spontaneously signed and said "I want a muffin" at breakfast time. First spontaneous sentence!
When asked where he found a bath toy that he brought into the kitchen he replied "Bathroom" in speech (no sign). First time ever answering a question! And he was right!
When asked what happened to his glasses, he opened the trash can lid and pointed. They were sitting right where he apparently left them!
While hugging a tree in the yard he signed and said "I like trees." I remember practicing that phrase with him a few times in the car last week, but this totally appropriate and spontaneous use of the phrase really blew me away. He's making comments now! (I didn't teach him to hug trees though.)

When we moved here, less than 1 year ago, Ethan was totally nonverbal. He has been signing since the age of 10 months, but now he's putting multiple signs together and making attempts at speech along with the sign. Seeing him put it all together is so rewarding...there are no words really. We're actually beginning to communicate with our son. It's huge.

The only downer is that I am worried that he might be developing nightmares/terrors as a side effect of the sleep meds. I'm keeping an eye on it and we may have to switch medications. For now I'm just trying to focus on the positive experience that is getting a good night's sleep. It's new to Ethan entirely and it's something I haven't experienced since pre-pregnancy.

Oh wait, I did get good sleep in New Mexico a few weeks ago! Rich held down the fort and I had a totally relaxing and amazing weekend with long lost friends. Life is good.

Dad Magic

2009-04-18T17:58:00.001-07:00

Well, first off, this will be an unusual post. This is the Dad of the household; I don't run this blog and though I've been asked to contribute many times by Hetha, it has just always seemed to me that she does a fine job without me. But on a rarest of rare weekend, she is away in New Mexico with her girlfriends and left Ethan and Dad here to run the show. A text message she just sent (as she left a Japanese spa) says she's "having the time of her life." It just seems if there were a time for Dad to put up a post, this would be it.

If nothing else, Hetha complained about no pictures, everyone's asking for more and I just took a bunch today. We went to one of Ethan's favorite playgrounds and he continues to amaze me with his strength, improved balance and mostly, determination. This kid climbs anything. So a monkey bar arched stairway to a spiral slide with a trapeze bar that he can swing out 10 feet in the air? Perfect!

Ethan played outside almost all day today in beautiful weather. Much of the day is just spent doing the "circuit," a brick path we have around the house that he loves to run around. As if built specifically to suit his physical therapy needs, the path has a series of gradually inclining or declining brick platforms requiring him to step up or down in an inconsistently sized series of steps. I've watched him run around this since the weather has gotten better and I feel it's really doing him some good. While I worked in the beds around the house today, Ethan got his workout.

Our "Dad Magic Weekend" started with me picking him up a half-hour late from school as it seemed he would appreciate the chance to hang out with his "girlfriends." When I picked him up, his girlfriend Laurel interrogated me about Hetha's whereabouts. "Where's Ethan's mom? What trip? Why? What girlfriends? When will she be back?" What a riot. Mac-Daddy Magic is funny.

And don't ask me why or how, but the Dad Magic does indeed continue. I got a good sleep out of him last night with him staying in his own bed all night. He awoke 3-4 times between 11:30am and 2:30am with none of them overly problematic, then slept until 8:30am this morning. In fact, I decided tonight that when I started this post, I had him tuckered out enough (not that that logic used to work) that by the time I finished it, I will have triumphed and he would be asleep. I feel almost guilty to even think such a thing, which just 2-3 weeks ago would have been ludicrous; after all that Heather has suffered as we've wrestled with this problem. But...the power of dad magic prevails. Let's just hope we're truly turning a corner there. If not, I guess it's just more much-needed spa trips for Heather.

This is Rich, "Dad Magic", signing out.

Bring on the tests.

2009-04-05T08:14:00.000-07:00

I need to start taking more pictures because I just combed through my files to find something for this post and came up dry. What's up with that?

We've been busy! I took Ethan to his developmental specialist recently and we covered a lot of ground. We discussed his sleep disturbances and she ordered a sleep study and prescribed medication to help him sleep. The problem has been there since birth but lately I've had a few nights that have pushed my sanity to the brink. My dear friend Adele just pointed out to me that I've totally lost perspective on his sleep trouble. I've lived with it for so long that it has completely distorted my notion of what a good night's sleep should look like. For instance, I'll mention that I've had several "good nights" lately and that simply isn't accurate. What it means is that Ethan slept next to me kicking me all night and only woke up 3 times! That has become a good night for me!

That visit was 5 days ago and Ethan has slept all night long by himself in his own bed for the past 4 nights with no medication. It's a little thing we like to call "Dad Magic". We know that his problems have been a combination of medical and behavioral factors, but it's never clear what we're up against with him since we have such a communication barrier. Either the past few nights have been a total fluke, or we're turning a corner. I haven't filled the prescription yet and don't plan to until we feel like we're free falling again. I don't have high hopes, but I see a light at the end of the tunnel for the first time in his life.

His developmental specialist is really on the ball. She mentioned the possibility of apraxia about a full year before it was truly evident enough to diagnose. She is now suggesting that we begin the process of assessing Ethan for autism spectrum disorder. We have been watching his behaviors and for so long he's shared a great deal in common with kids on the spectrum. We felt that most of it was likely due to cmv, but there is a chance that he could also be autistic. The main areas of concern are his lack of social engagement with peers, imaginative/creative play, and functional language development. There's no doubt that he is very smart and has tons of potential, but it seems like it's all flowing in and is stuck trying to get out.

Rich and I are hanging tough. We don't have any definitive diagnosis and if we do end up going down that path it will help us direct more targeted services for him. There are techniques such as applied behavior analysis and social stories that are part of the treatment for some autistic children and these could really help jump-start his language development and improve his behavior/alleviate his frustration.

We also had an audiology appointment recently that freaked us all out. Ethan has always been very well behaved during those appointments and has allowed the audiologist to do whatever she needs to do with his implants. Not this time! He was extremely combative and hysterical the moment she took his implants off. He could not believe we wouldn't let him wear them. The behavior deteriorated when we tried to put it back on him to do the actual testing with the computer. She wasn't able to get any data or do any programming on either ear after 2 hours of pulling every distraction from the book. It was nuts. I've never seen him so upset.

We're told that this is absolutely a normal phase of development with Ci kids. They become really bonded to their hearing and have a very hard time when they are unable to use their Ci. The professionals find this to be a positive step forward for him but as a parent it's fairly upsetting. I want him to be happy whether he is hearing or deaf and there will be times in his life that he will have to be deaf. The only thing that makes me feel good about this is the fact that it's likely just a phase.

That's what it's all about though, this parenting gig. It's just a series of phases. I don't imagine that it gets any easier does it?

Using his words

2009-03-17T06:46:00.000-07:00

Ethan has been thrilling us lately with his progress in speech and language. His new speech therapist (now 5 min. away!) is really encouraged by his latest attempts at speech and just can't believe how far he has come since summer. We were looking over the speech goals written by his former therapist last fall and he has met nearly all of them. I remember those sessions over the summer well and it seemed like there was never much to report to the therapist. Now I go in each week with a at least 2 or 3 new things Ethan has done or said. He has increased the number of words he can consistently and articulately say and he is beginning to put 2 words together as well.

For the most part we've found that his speech requires a great deal of prompting, but in recent days we've seen signs of spontaneous language that has just blown our socks off. We were at the playground and Ethan wanted Rich to go down the slide. Rather than his usual method of pulling your hand in the direction he's aiming for, he just looked at Rich and said "dad slide." Rich was taking Ethan out to the car to go to school recently and Ethan spontaneously said "silver car." This is stuff for the memory books!

His new therapist is just incredible. Her background is in working with deaf and hard of hearing children. She is a fluent signer (but knows just when not to use sign) and has a really bright and cheerful disposition. I find her incredibly easy to talk to and we've had some great discussions generating ideas of how to pull more language from Ethan based on his strengths and his interests. I adore her and so does he. She makes a point of acknowledging the incredible amount of work that goes into this for Ethan. He is a very hard-working little boy. None of this comes naturally or easily to him not only because he is a deaf child using a cochlear implant, but because he has a fairly significant case of apraxia. That double whammy makes the job of speaking exponentially more difficult than it would be if he were either just deaf or just apraxic.

I should say that if he were taking huge strides in developing his sign language, I think I would be equally pleased. He seems to be favoring speech over sign for the moment so it might become frustrating for all of us since he is so difficult to understand. Hopefully he'll continue to use sign for those moments; I think that he would if I started using more sign with him myself. Our therapist reminds us (and we are keenly aware) that language development is what's most at stake now, and that can be speech or sign. He has the rest of his life to work on articulation, but now is the time to see to it that he develops language. It's much to think about.

Edited to Add!!

We just got an unsolicited "dad's silver car"

First time he's said 3 words together clearly.

Wow!!

Cool Cats (Ethan & Neko)

2009-03-08T15:45:00.000-07:00

The Right Track

2009-02-24T14:23:00.000-08:00

We have been through the process of writing an IEP with 3 different school districts in the last 8 months and today I finally signed something. The one we wrote in our new district is by far the strongest of the 3 and the only one that states that a deaf school is the best placement for Ethan. It occurred to me today as I signed and dated the final document that it would be really nice if I had an IEP for myself. It would have goals that pertain to taking care of my own basic needs and there would of course be support and accountability built into the contract.

It’s so easy to get caught up in the role of parenting a child, but especially one with so many issues that are under constant care and consideration. I've put so much of my mental and physical being into parenting Ethan, that I've neglected to care for myself on some pretty basic levels. Moving to this place has enabled me to finally relax in the knowledge that Ethan’s needs are being thoughtfully addressed by wonderful and talented professionals. Seeing him thrive here has made it much easier to change my focus, or at least widen the scope. I’m trying to take naps (I don’t sleep well due to Ethan’s continued sleep disturbances) and I've been making wiser choices about what I eat. I have enrolled in an exercise class that I really enjoy and while he is at school I’m spending less time creating and maintaining to-do lists and more time taking baths or reading for pleasure. I have even been so bold as to schedule a couple of doctor appointments for myself. It feels good to let go of the reins a little bit and let other people work their magic with Ethan. I think he likes it as much if not more than I do.

Snow Day!

2009-01-28T09:33:00.000-08:00

Suited and Booted!

Inspection before eating.

Snow-eating grin!

Pics of the Place

2009-01-18T14:26:00.000-08:00

The backyard

View of backyard from deck

The toy room in our basement

More toy room

The craft table in the toy room

Can you tell we really like the toy room? I love it because I'm the type of personality that craves order (just like David!) and having Ethan's toys strewn all over the house has always been an "issue" for me. I compulsively pick up after him and in so doing, he hasn't learned to do so for himself. Having a room in the basement where he can make messes is good for all of us. Though I guess these pictures aren't really showing much of a mess. It's a sickness, what more can I say?

I've had the unreal pleasure of reconnecting with my two best friends from childhood. I found them (or they found me) on Facebook and we quickly realized that we live very close. One friend is only 3 miles away and the other is 9 miles from us. It's amazing seeing them again and picking up so easily after 23 years!

Another odd coincidence that I haven't mentioned is the connection we found with the original home owner and his realtor. He has a daughter who is now a pediatric audiologist. She was delighted to hear that a little boy with cochlear implants was moving into her childhood home. To top it off, we found out at the closing that his realtor is on the board of a local nonprofit that raises money for deaf education!

I don't actually believe in coincidences though :-)

----------Edited to Add----------

And we found another babysitter online who A) Happens to be an interpreter for deaf children and B) Lives really close to us, like a mile or something! HOW CRAZY IS THAT PEOPLE?

New Beginnings

2009-01-10T07:58:00.000-08:00

Home.

We've been busy getting settled and finding our groove in our new location. There are days when I look around and just can't believe that we live in this house. It's such a good feeling to look out the windows into the woods and imagine Ethan growing up here. I've longed to put down our roots for 5 months and now we can begin to sink into this place. I haven't taken any of it for granted for a moment. We are truly blessed.

Our new home is 5 minutes away from the newest (and nicest) campus of the children's hospital. They have everything there so we're moving Ethan's therapies and a few of his clinic visits with doctors to this location. I used to drive 1.5 hours each way for his speech and 1 hour each way for his OT and PT and now it's all within a few miles of our home. Unreal!

We're about 20 min. from Ethan's school. Right now we are transporting him ourselves, but in the future when he's a bit bigger we'll have our new school district do the driving. Our new school district which on Thursday agreed to pay to send him to the deaf school! Yes! That news is still sinking in. I have been in battle mode since June, so this is fairly life-changing for our family. The fight is over. For now.

There's no question that a deaf child with apraxia should be sent to a school that specializes in teaching communication. The issue has been and will always be about money. It's sickening to me that a child born and raised in a less affluent community isn't given a fair shot to meet their potential. I could blog about my passion for school funding on a separate blog and have a new post every day! Teaching in a rural and impoverished school district made this a sore spot for me, but having a child with disabilities has turned it into a gaping wound.

The IEP meeting was actually enjoyable. They had 3 people at the table and we brought Ethan's teacher from the school for the deaf as well as the director of the program he attends. We rewrote the goals from the last IEP as he has made so much progress since August. How about that! We only came to a impasse when I asked for a one on one aide for Ethan. They said they would look into it but that it was unlikely they would be able to provide one. I'm not surprised and I'm not going to let it take away from the victory that we achieved through this move!

I'm off to meet an old friend for lunch. Life is pretty swell these days for this family. I hope it is for yours as well.

Meeting Santa for the first time.

2008-12-17T16:47:00.000-08:00

Our children's hospital puts on a wonderful event called "Sensitive Santa" organized by the child life specialists and the family resource center. It's a chance for children with various physical and cognitive challenges to meet with Santa on their own terms without standing in a long line, which is something that we would simply never be able to do (with any sanity) with Ethan.

This Santa was able to sign to Ethan and we had our own Elf assigned to stand in line for us. Mrs. Claus was there as well as a juggling reindeer on stilts, a Christmas band (with upright bass, trumpet, etc.) and a magician. Seeing the smiles on the faces of the children in that room literally brought tears to my eyes. I watched one little guy in a wheel chair use his electronic AAC device to discuss football scores with Santa and the smile on his face was absolutely priceless. Santa took his time with each child and there was no pressure to make it snappy. Ethan enjoyed the entire experience, as did we. I hope they do it again next year!

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We closed on our new house on Monday! We've got movers helping us with furniture on Friday morning but I've been making trips over to the house all week and have nearly finished setting up the new kitchen, the bathrooms, and the linen closet. Oh, and Ethan's room is nearly finished as well :-) I'm darn motivated!

So we'll go shopping for a Christmas tree on Saturday and then a few days later our families will join us to celebrate the season in our new home.

I have never felt so blessed, so fortunate, and so grateful in all my life.

Too much fun...

2008-12-13T19:40:00.000-08:00

courtesy of photofunia.com

Ethan Inspires

2008-12-09T10:54:00.001-08:00

Ethan sitting in circle time in his classroom.

I opened my email today to find a message from a mother in Nebraska (Hi Stacy!) whose son is also profoundly deaf (with cochlear implants), severely apraxic, and wears glasses. She had recently found Ethan's World and wrote to tell me that it gave her comfort and inspiration.

It made my day to hear from Stacy! What an honor it is to be able to inspire people with Ethan's story. I'm just blown away by that.

I started this blog in order to keep our friends and family updated on all things Ethan, and here we are nearly 3 years later, meeting (and even inspiring!) families who face similar challenges. I've been able to share the highs and lows with people like Kristina in Delaware, parents who know first-hand the roller-coaster ride that accompanies the unraveling of one diagnosis after another.

The Internet ROCKS!

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Today I attended a field trip with Ethan's class to a beautiful old theater downtown for a children's production of Rudolph the Red-Nosed Reindeer. It was fantastic! We were in the 2nd row, so Ethan and his classmates had an excellent view of the stage and were able to see the kids facial expressions and the details of the set and the costumes. Ethan sat still for nearly an hour, something I never thought I'd see without heavy medication. He was fixated on the interpreters for the first few minutes, but then realized that he was missing a dozen dancing elves and quickly turned his gaze to the front of the stage.

Mom reminded me that when you have a special needs child you can often get special (re: awesome) seating at events like this. If you think I'm going to exploit my child's disabilities just so I can have a better seat at plays and performances, then you are exactly right :-)

(Actually, I can't imagine he would have as much interest sitting anywhere else....)

G. I. Business

2008-12-02T10:49:00.000-08:00

From the archives - PT Session Jan. 2007

I just came from school where Ethan's teacher informed me that today he was a totally different child. They were wondering how long he's been on his new medication because it appears to have really had a jaw dropping affect. I poked my head in and noticed that he was sitting on the circle with legs crossed paying attention to one of the aids as she was signing and telling a story. His aid was not seated behind him for some reason. I stayed and watched and he continued to sit still and pay attention. None of us have ever seen this type of behavior from him and we were all pretty taken aback by it. Not only that, he also focused on his work today and they were able to see (finally) that he has his ABC's mastered. He actually followed directions while his teacher assessed his knowledge, thereby showing her what we've known for months. During circle time he was asked to bring a numeral up front and match it with the corresponding number. I guess he followed the instructions and matched up the numbers, causing all the kids and adults in the room to spontaneously start cheering for him.

His inability to focus and follow directions has been extreme. We've been hearing terms like ADD and ADHD and have been bracing for another hurdle, another mountain to climb. But if he has many more days like today, he may actually be able to get by without a one on one aid.

Ethan has had a lot of lab work done recently to get to the bottom of what is going on in his gut and it seems there's a whole lot of ugly going on in that little tummy. He has a yeast overgrowth and 3 strains of bad bacteria taking up residence. He has begun developing intolerance's and allergies to foods the way I've developed a penchant for soy chai's at Starbucks. Poor, poor fellow.

Shopping and cooking for Ethan has turned into a science. I contemplate the labels of every single thing that I buy and due to the extensive list of things we have to avoid, most of the items I look at go right back on the shelf. Basically, he can eat meat and veggies. Fruits and carbs aren't looking so good as they both feed yeast. Sugar feeds it too, so now I'm investigating the sugar content of nearly everything. He can no longer tolerate rice in any form, so that has seriously impacted our pantry as I was using rice flours and rice milk. He's allergic to all nuts. He's even allergic to sunflower seeds and safflower oil. I could go on, but you get the point.

So the only actual medication Ethan is taking is Nystatin to kill the yeast. He's taking probiotics twice a day and eating a digestive enzyme tablet before each meal and snack. He continues to be on a gluten and casein free diet. He's on vitamin C and a B complex with folic acid. Eventually when his tummy is showing signs of healing he can start taking iron as he is also anemic.

I've heard it said many times, that we were meant to become Ethan's parents, that somehow God hand selected us for the job. I used to just smile and nod at that comment, as if it were my duty to show some humility, some modesty. But now I can say with great assurance that yes, we were meant to parent this little guy.

I don't know anyone else who is better suited to the task than his father and me. And we're so thankful that he's ours.

My little "mac daddy"

2008-11-20T06:00:00.000-08:00

This sweet little girl held Ethan's hand and helped him navigate rough terrain on our field trip to the farm this month. She never took her eyes off Ethan, I was so moved by that.

This morning when I dropped Ethan off at school one of the teachers aids told me a story about how Ethan is the "mac daddy" of the class. I looked this term up on the urban slang dictionary, just to be sure that it meant what I thought it meant :-)

"The mac daddy is the man who means everything (and the only man who really means anything) to his ladies (of the night)"

Um....cool?

I guess there are several girls in his class who like to help him throughout the day and there have even been a few fights breaking out lately over who gets to sit near him and help him unpack his lunch. One little girl reportedly said "I want Ethan to be MY husband"! Apparently he is surrounded by girls on the playground everyday as well; they all like to help him in and out of the cozy coupe.

I never expected it to start this early, but it really makes sense when you consider the fact that many 3 and 4 year old girls really like to "mother" and Ethan is one of those kids who needs a lot of help doing everyday skills. He's an ideal classmate for a sweet little girl who enjoys helping and taking care of others. I'm thankful that there are so many of them in his class this year :-)

My Guys

2008-11-16T14:03:00.000-08:00

Ethan and his dad on a school field trip earlier this month.

Good Stuff:

Ethan can now walk up and down stairs without assistance! He still requires supervision, and it's very slow going, but he is gaining more and more physical independence each day.

Ethan likes to pray. I heard him say (not sign, SAY!) "Thank you Lord" while taking a bath. He also practices saying and signing his prayers in bed at night just before drifting off to sleep. The ASL for religious words is gorgeous, particularly the sign for God.

Ethan actually used the potty this week. He sits on it regularly, but this time something actually happened while sitting there :-)

We are buying a house and should be moving in mid December! This means engaging a new school district and saying goodbye to the one we have been "fighting" over Ethan's placement.

It's all good.

2008-11-02T05:38:00.000-08:00

Firefighters just want to have fun!

Ethan went trick or treating at school on Friday. See how big this school is? He got candy from every single classroom!

Ethan during a speech therapy session.

I love October, but I'm really glad that it's over this year. Rich was out of town (working) for all but 2 days last month. Ethan and I have really missed him. We took a trip to Virginia and visited my parents, had several different appointments with the team, and started weekly PT with bi-monthly OT about to begin next week. Ethan also participated in a research project at Children's that examines language development in young deaf children who have developmental disabilities and cochlear implants.

We successfully closed on our house in Athens and now have money in the bank and a big decision to make about our next move. It's the first time we've been able to relax and take a deep breath since moving here in July and it feels GOOD. I don't see us jumping into a new house anytime soon, unless of course the ideal place presents itself with the ideal price tag. We're actually really happy in our little apartment, especially now that we have Rich here for an extended stay.

Ethan continues to make our hearts sing with his vibrant and tenacious little personality. He has been working so hard on speech lately and it's beginning to look like he may someday be able to talk. I have always been very hesitant to make any assumptions regarding what he will or will not be able to do, especially in the speech department. That doesn't mean that I don't have high expectations for Ethan's future, it just means that I'm guarded about the details of how he'll get there. It's a form of self-preservation that is necessary if I'm to keep myself from feeling sad or depressed.

There's nothing to feel sad about these days with regards to Ethan's progress. We're hearing his sweet little voice all the time now. He has mastered the variety of vowel sounds that our language produces and he's also quite good at the beat of speech, never missing a syllable. He's picked up the ability to enunciate a handful of consonants now so his speech is sounding more and more intelligible each day. His signing is taking off as well. Yesterday he signed his first phrase, "My name is Ethan". We were over the moon!

The sight reading is also continuing to amaze our family, his therapists, and even the researchers who worked with him last week. I'm going to have to compile a word list that he reads before our next IEP meeting, but I'd say that it's up near 30 words at this point. He's one observant little dude. He's starting to sign and say "smart"; apparently his self-esteem is on the rise along with everything else!

We continue to move along on the gluten-casein free diet. It's not as much work as I had imagined many weeks ago. He can still eat meat, fruits, and veggies. The carbs are where you have to be really vigilant. He has never tolerated dairy in any form, so we didn't have to give those things up, which for many starting this diet is the toughest part. I've been watching the meats we buy to make sure they have no additives such as nitrites or nitrates. We're generally going with products from Whole Foods or all natural lunch meat from Boars Head. I've restocked my pantry with tons of flours that I never knew existed and have found numerous delicious baking recipes online. So it's not as daunting as it seemed and I'm convinced that it's really helping our boy. He is giving more eye contact and engaging in social interactions and his speech is obviously exploding for the first time in his life. The diet combined with the program at his school have formed the perfect recipe for his success.

And there's plenty more of that on the horizon....

Accepting a new label.

2008-10-13T06:21:00.000-07:00

E-boy modeling his Halloween costume

The puzzle that is Ethan is coming together in some extraordinary ways. It seems like we've spent the first 3 years just waiting and wondering what he would do and now it looks like he's actually going to do whatever he darn well pleases; "the sky is the limit" as his teacher said to me last week. Of course, we really need to get him to focus for that phrase to ring true, and we're working on it. He has needed a one-on-one aide at St. Rita not only for safety reasons, but also because it's tremendously hard to keep him focused on an activity that isn't of high interest to him.

We have new ammunition going into our next IEP meeting, which has yet to be scheduled. I'm waiting until we get the evaluation and report from the child psychologist who I met with last week. I was beyond impressed with his resume, his personality, and his specialty in deafness and ability to sign fluently. This guy is top notch and perfectly suited to work with Ethan.

Our new ammunition comes in the form of a new label, one that I think carries a lot of weight due to the emotional punch that it delivers. Ethan has ataxic cerebral palsy. His developmental specialist has been seeing Ethan since infancy and started mentioning the possibility of CP at about 18 months. She has been going back and forth on it since his case is so mild, but the most recent physical therapy evaluation combined with his neurological history (intracranial calcifications) and his current age just came together to seal the deal.

Rich and I aren't by any means happy about it, but we're not dwelling on the negative either. In our estimation, Ethan is the exact same child as before this new label and we have also learned that these labels are what open doors for us in terms of support and services. This whopper might just make it possible for us to get assistance so that Ethan can finally get the weekly PT that he has needed all along. Our insurance (that is about the size of a monthly mortgage payment) only allows 20 visits of any of his therapies per year. He needs weekly OT, weekly PT, and 3 x's weekly Speech. He has never had any of those because the insurance won't cover it and we simply can't afford it; each session is nearly $200 per hour.

There is also a possibility that the diagnosis will secure that one on one aide for Ethan in his IEP. I'm not counting on it, but I'm going to work it like no ones business.

Ethan has also been unveiling outrageously impressive new attempts at speech lately. He is trying to say words like never before, and of course signing along with his vocal attempts. I'm so glad he's signing since many of his vocalizations are unintelligible. I've also discovered that he has been memorizing what words look like and remembering their meaning. I arranged magnetic letters to form the word "stop" and Ethan looked at me and signed "stop". So I tried it again with the words play, go, cat, ball, mom, dad, table, kitchen, frog, girl, boy, hat, car, etc. He signed each word correctly! I'm not suggesting that he has the concept of reading, but I am certain that he has a photographic memory for words! Each of the words he knows are in his books, and he has spent countless hours in his life staring at his books. It's interesting and exciting to uncover the workings of that little mind that has eluded us most of his life. He's much more complex than even I have given him credit.

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We go to Athens on Friday to close on our house. Our lease here will end in January and we're seriously considering signing on for anther 6 months just to sit back and see how bad this economy is going to get before taking the enormous leap of buying a house. The place I wrote about that was close to Ethan's school didn't work out since the home owner decided to lease the house before we could make an offer. Oh well. As Rich put it, "We're getting good at being disappointed". Our dealings with 2 public schools and losing 2 contracts on our home have really taught us how to keep the old chin up!

Milestone: 1st Political Rally

2008-10-10T07:59:00.000-07:00

That's Barack Obama in the white shirt on the other side of the flagpole :-)

Fall on the Farm

2008-10-04T11:19:00.000-07:00

I've met a handful of parents through Ethan's school and this morning one his classmates and his mother invited us to visit a heritage farm. The weather was gorgeous and the kids painted pumpkins, pet several animals, and watched a group of cloggers do their thing to some bluegrass tunes. It was so nice to get out and enjoy the day with a new friend!

Ethan loved watching the chickens, I hated smelling them.

Ethan signing chicken...

A line forming for a hay ride around the farm. We didn't opt to try this since Ethan would have been diving head first off the back of the wagon.

Looking at the billy goats.

The sight of this cow prompted a sign as well as a spirited "Moo" sound from Ethan, minus the "M" phoneme. He's still working on that letter...

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IEP Update

We're moving things forward, slowly but certainly strategically. I dropped in and observed the preschool classroom at the public school where Ethan would be placed if he were not at the deaf school visiting. This is a classroom that we were told would be total communication. It was far from a TC environment. I saw very little sign language while I was there and even saw some being done incorrectly. So....

Next we are going to have an IEE (independent education evaluation) performed by a psychologist that will focus on Ethan's social emotional development with regards to his communication modality. Ideally, this person will visit both classrooms (public and deaf school) and assess Ethan as well, then write a report that will confirm what we have been saying all along. How is he supposed to develop socially or emotionally (or even academically) in an environment that at its most basic doesn't have any fluent signers?

Needless to say, I didn't see that interpreter/aide that they promised and even if I had, it wouldn't change the whole environment to a TC classroom. It would mean that one person in it was fluent in sign. Big deal.

We're also giving up on our advocate and are shopping for a new one. The one we've been dealing with has been harder to work with than the school. She's an abusive bully who yells at me when I ask any type of question. Yesterday after a quick question she responded, "Aren't you listening? Haven't you heard a thing I've said?"! She also never lets me finish a sentence. And she's very unorganized and is unable to focus her attention. People put up with her because she does it for free and she knows the law and understands apraxia and hearing loss. I'm not a glutton for punishment, nor am I incapable of reading and understanding my rights without being berated in the process. I think she's a liability in the long run.

This isn't easy and I'm sure I'll look back on this time in my life as a period of intense stress and worry. But the big picture remains unchanged, Ethan is going to be fine.

R-E-L-I-E-F

2008-09-27T06:28:00.000-07:00

I've hesitated to say a single word about it, here on the blog or even to our friends. This is the 3rd contract our house has been under (yep, we had contract #2 and it also failed) and I think this is the one that will stick. We're heading to Athens today to clear out the garage and get the place ready for closing, which should be towards the end of October.

I'm so excited for us! This literally changes the whole picture for our little family. The amount of relief this brings to us financially and emotionally is staggering!

We've got our eye on a very cute little place that is for sale by owner and happens to be less than 2 miles from Ethan's school. We're going to be looking at it again soon and talking to the owner about price, home inspection, and all that other good stuff that goes along with this miserable business.

Ethan continues to grow and change in ways that are hard to articulate but that are constantly amazing us. Everything seems to be improving and changing for him all at once. His balance and coordination, his speech, his sign language, and his behavior are all on a major upswing.

I leave you with Ethan's first photograph which he took with my phone last weekend.

Recharged

2008-09-14T06:39:00.000-07:00

This is what Rich and I look like when we're A.) all dolled up at a wedding and B.) relaxed and enjoying some time together. Our weekend in Cape Cod was probably the best weekend I can remember having in all of my 38 years. Rich didn't miss a single detail and I felt like royalty from the moment we left town to the moment I returned. I didn't worry about Ethan at all because he was in good hands and I knew he was having a great time. Whenever Rich called home to get an update we could hear Ethan's laughter in the background. I slept through the night 2 nights in a row in big comfy bed and ate amazing food the entire weekend. I saw old friends and spent much needed one on one time with Rich. I danced and laughed my self sore.

Now we're home and Ethan and I are on the mend from some weird upper respiratory illness that he probably brought home from school. He missed 3 days this week and was pretty bummed about it, each day signing "backpack" and "school" as if to remind me that I was forgetting something important. In addition to signing more often, interacting with peers, and following directions; Ethan has also been putting things away when he's finished and he's getting better by the minute at going up and down the steps. School has really transformed him already and he's only gone for 3 weeks!

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Last night I read a blog post written by a mother of a child on the spectrum that really resonated with me:

"And so here's my five-cent revelation, guys: the hardest thing about having a child on the spectrum is the relentless advocating--every damn minute of every damn day--to make sure that the rest of the world treats him with the respect and care he deserves, until such time as he can do it for himself."

I have been teetering on the edge of losing my resolve when it comes to the dispute over his placement at the deaf school. Most of the time I just want to cave in and pay the tuition ourselves. Giving up isn't really an option for us financially, but neither is taking this to the bitter end. Going through due process could cost us up to $10,000 and we could still lose. In Illinois (the only state I found stats on) the court favors the school 2/3 of the time. So if that statistic were similar here in Ohio, we'd be out the money and still be stuck with the cost of tuition.

Our advocate gave me some extreme advice after just one harried conversation. She has a great record of winning her cases (she's not a lawyer, but she knows the law) so I decided to follow her directions and I withdrew our appeal. She instructed me to request another IEP meeting instead because we have a new report from Ethan's SLP that we would like to use as part our argument. She thinks (and I'm sure she's right) that if it isn't part of the IEP or MFE (sorry for the education terms) that the school won't give it a second thought. I hate the idea of going back into another IEP meeting, but from what I know about this woman, she's a shark and she'll likely do all the talking anyway! She sees multiple issues with his IEP that need addressed, so I know this is the right thing to do.

She also wants a psychologist to visit the placement at the public school as well as observe Ethan at the deaf school. This report can support our argument that Ethan's social/emotional development will be stunted in a public school vs. a school where all the children and adults use sign language. How we get this paid for is still a mystery.

The only good aspect of all of this is that Ethan's deaf school is very understanding and they are allowing him to stay on as a "visitor" for as long as it takes to resolve the situation. They have never asked a deaf child to leave for lack of money. That would go against everything they are there to accomplish. So Ethan will remain in this wonderful place that is helping him find his voice while I continue to dig deep and try to find my own.

Intensity

2008-09-04T17:33:00.000-07:00

I spent the better part of the day today dealing with an advocate and making strategy changes to this conflict with the public school. She is intense and high strung and I'm, NOT. So I have been trying not to absorb too much of that frantic energy but it has been difficult and this whole process is starting to get the best of me. I'm starting to feel like things are going to go from amicable and friendly to aggressive and adversarial. I am a peace-maker personality, so willingly entering into this state of mind is a tough choice.

But I'll settle for nothing less than what is appropriate for Ethan's education.

As I prepare to take Ethan to bed, I'm smiling at this thought:

At my high school reunion last weekend Rich was wearing a name tag that said that he married me. In the bathroom a man he doesn't know or remember approached him and read his name tag, then responded "You got a real live one! Free-spirit!"

Now I just need to channel that firecracker to deal with the challenges of the day and all will be well in my world.

6 Reasons to Celebrate

2008-09-03T19:30:00.000-07:00

#1 Ethan LOVES his new school, he is at the school for the deaf here and it's amazing how well he is taking to it. He's a new kid! He signs so much more often and has been seen initiating social interactions at school! We have never witnessed Ethan engaging, much less initiating interaction with a peer, so we're THRILLED! He is starting to follow directions! The other day he wanted to show Rich and I the circle in his classroom, so he took us over and showed us while signing "sit", then he sat down. On the way out of the building he likes to sign "eat" as we walk by the cafeteria and "ball" as we head past the gymnasium. This level of communication is totally new for our family and I think being immersed in a sign language environment is the Main Ingredient. Finally, after 3 years, my son is finding his "voice"! There just aren't words for it.

Of course we're still dealing with the public school here and I've written and submitted a letter of appeal. I linked to it over on the sidebar just in case any readers find themselves in need of a template. It took a long time and I'm hoping that we can help someone else in a similar situation.

#2 I love our new babysitter. She is a young woman who happens to be profoundly deaf, so she and I have been emailing, but I've also been holding my own in our signing conversations, which feels pretty amazing. She's wonderful and Ethan also loves her!

#3 I'm taking ASL classes at Ethan's school. My teacher works there and though she is hearing, she is a fairly fluent signer with 20 years experience. This is a great opportunity and our babysitter is making it possible (Rich is usually out of town on the night of my class).

#4 I just attended my 20 year high school reunion and am still flying high from the feelings that accompany being reunited with some of the most important and memorable relationships in my life. Can't beat it.

#5 My birthday is Saturday and Rich is taking me to a weekend getaway (for a wedding) on Cape Cod. Rich and I haven't had that much alone time since Ethan's birth, which has been even tougher for us as we've been under some intense stress. It will be awesome :-)

#6 My parents spent last weekend watching Ethan and a great time was had by all. Those are pics from their trip to the zoo; apparently the polar bear was really putting on a show.

Now what?

2008-08-25T10:32:00.000-07:00

It's starting to seem like things just aren't meant to be easy for the three of us :-)

I know that in the recent past I’ve indicated that we were so impressed by this school district that we felt we had a tough choice to make. After writing that post, I decided to consult with my online contacts about the nature of interpreting for preschoolers and the fact is, it’s nearly impossible to do. The crux of the issue is that it’s too abstract for children this young to understand that an interpreter is speaking for someone else. Not to mention that a young child needs to learn their primary language directly, rather than through a third-party like an interpreter. To top it off, after doing some research and emailing back and forth with an interpreter, I realized that their code of ethics expressly forbids them from teaching or even clarifying information. They are strictly there to interpret and that’s it. That obviously doesn’t work for a young child in an educational setting does it? Having this information suddenly made the decision a no brainer for us.

Honestly, this public school district has blown our minds with their level of professionalism, their competence, and their genuine desire to meet Ethan's needs. They are offering an interesting idea that they've never offered before, so Ethan would be trying and testing their concept for the first time. They want to put an aide in the room that is not only a licensed teacher, but also a licensed interpreter. It gets a little fuzzy here as we try to nail down the language describing her actual role in the classroom and even the administrator present during the IEP meeting was looking for clarification on this point. Basically, she’d be Ethan’s aide and would teach him sign language but she would also teach the other children and she would be there as a resource for his main teacher who happens to have a solid foundation for sign (on a preschooler level) but is by no means fluent. It sounds great in theory, but when you get to the nuts and bolts of the situation it becomes less and less appealing.

The law says that the IEP team must consider direct communication between teacher and student and peers. That is part of "least restrictive environment". We think the “least restrictive environment” for Ethan is to be in a deaf school where he has access to direct communication in his primary language with all the staff and students. The public school cannot match this and we feel it's his right to have that access as a deaf child, and that the law very clearly illustrates that point. I even used the language of the law (taken from IDEA, the section on educating deaf children) while making our points during the meeting, but they disagreed with us and felt that they had all their bases covered. It takes some serious confidence to disagree with the law!

Our next step is to file an appeal, which in Ohio means writing a letter to the superintendent to get him/her to review the case and hopefully change the decision in our favor. If that fails, then we go into mediation with the district. We would likely take an advocate who knows the law as it pertains to educating deaf children. If that fails, then we go to due process and have to hire a lawyer and go to court. We’re trying to remain very optimistic that it doesn’t come to that.

The Never Ending Roller-coaster Ride

2008-08-22T11:00:00.000-07:00

We are home from Ethan's IEP meeting and it's all I can do to keep from making myself a tall stiff alcoholic beverage right now, and not because there is reason to celebrate.

The school district we're in feels that they can address all of Ethan's educational needs and so have declined our request to send him to the deaf school. We're pretty taken aback by their decision because there are 3 children in Ethan's class from our district and one of them is not even deaf (she's severely apraxic) and all 3 of them have a full ride paid for by the district. What a difference one person can make on an IEP team; the person who used to be in charge of those decisions has left the district and we got to break in the new guy today. I guess he felt that he had something to prove and our case was a good way to prove it.

I really don't want to wallow here, or anywhere, because that just isn't the way I roll, but damn it if I don't feel like the universe owes us a break! We uprooted our lives for this opportunity! What more are we supposed to do?

We'll continue to fight. We'll go through the process of appealing the decision and we'll get mediation and go to court over it if we have to. And Ethan will be be in good hands at his new school until we just can't fight it anymore.

But really, he deserves this and I just can't believe that we're going to fail at giving it to him.

The Big Boy

2008-08-18T13:09:00.000-07:00

Ethan turned 3 on Sunday! Here he is playing with one of his favorite gifts. He's so obsessed with this tent that we decided to keep it out of his view this morning in order to make sure he would eat his breakfast and be willing to leave the apartment. He noticed it was gone and immediately started looking around while signing "tent". Did we actually think he would forget about it simply because it wasn't visible?

Here's Ethan wearing his backpack and name-tag this morning on his first day of preschool. He is attending St. Rita School for the Deaf. We're sending him there this week as a "visitor", though we hope to see that status change after the IEP meeting to become "student". The big meeting is this Friday at 10 a.m. I'm nervous about it but excited just the same. We've been gearing up for this stuff for so long and now that it's all happening it just feels surreal. Wish us luck on Friday. I'll post as soon as we know anything.

Lots to Love

2008-08-02T21:21:00.000-07:00

Thanks for the hat Aunt Audrey!

Ethan and his mama!

We're all pretty happy around here these days. It just seems like there is absolutely nothing to complain about anymore :-)

Ethan is developing like crazy lately with his new interest in food and all the other groovy stuff he's doing. On Thursday he ate veggies in their pure form for the first time in his life! He had roasted carrots and green beans with olive oil and herbs, as well as grilled chicken! I watched him like a hawk the entire evening, worried that he would be sick or have reflux, but he kept it all down and had a decent night of sleep as well!

He also said the word "dance" several times this weekend! He loves it when we dance and usually just signs the word, but this time he signed it and said it. I was floored! I still am!

We have all kinds of appointments lined up for August and September, new therapists to meet and relationships to build. I'm excited, but I'm also homesick for Ethan's former OT and PT. His OT (hi Marylee!) would be so jazzed by this new love for food as she made it her mission to make him healthy foods that would appeal to his sensory requirements. I just know she'd be having a field day with this latest development.

I'm most enthusiastic about the appointment in October with a doctor in a metabolic clinic. Remember those labs I was talking about months ago? I stopped short of doing them because I wanted to do them under the direction of a doctor and there were none in Athens that knew what I was talking about. I've found the ideal clinic here that speaks that language and when I talked to the receptionist about Ethan she said "I'm so happy for you, you've found the perfect place for Ethan, we'll get to the bottom of his gut issues, you can count on it". I literally felt tears form in my eyes upon hearing that statement. She then said "I'm a mom, I know how important this is to you and I can assure you that you've found the right place".

My brain is on overdrive trying to process the school stuff and it seems each day that I flip-flop on where we should send him. I wish I could process it more fully here on the blog, but I have no idea if the school people are reading and though I have nothing to hide, I also know that everyone has their own agenda (myself included) and that this is in large part a game of strategy and semantics. I'm going to think about ways to talk about some of it here though since I have readers who I think could weigh in and offer a unique perspective.

Wordless Wednesday

2008-07-30T12:28:00.001-07:00

Breaking Through

2008-07-27T21:08:00.000-07:00

Blueberry Addict.

a few days ago I wrote:

"Ethan has always been a very resistant eater. He doesn't eat fresh vegetables, fruits, pasta, rice, or anything creamy."

Ethan has been remarkably hungry and interested in food for the past several days. He is a new boy this week. I don't know how long it will last, or if it's here to stay, but the child is blowing me away with his desire to eat all the time and to try new things.

We were dining on some delicious Korean food last night, when Ethan decided to try eggs for the first time. It was fried egg with beef and green onions minced up in the mixture. Today he ate (and loved) red plums. He's also been inhaling watermelon and blueberries.

Could his sensory stuff be improving? Or even his overall digestion? Or is it just some weird phase, the likes of which we've never seen? Could it just be that he is finally beating the psychological game?

I have never been able to get him to drink a smoothie, but today he had several sips of his rice milk and blueberry smoothie.

This evening he ate chicken! That was going down the hatch just fine until he saw the bacon. He is "the Baconator" after all.

This is awesome, this feeling of comfort you get when you see your child eat normally. I'm feeling really optimistic and grateful at the moment.

On parenting a deaf child

2008-07-24T09:39:00.000-07:00

Ethan's friend Zeva, the ultimate sweetheart, puts his cochlear implant back in place.

I was recently asked a few questions by a doctoral student in audiology; she is writing a paper for a psychosocial aspects of hearing loss class.

Q: What was your initial reaction to learning about your son's hearing loss?
A: Serious grief. I cried for 2 days straight. I was inconsolable. I had no knowledge of hearing loss and didn’t know that digital hearing aids or cochlear implants existed, so my assumption was that he would never hear and never speak and it was too much to bear. I was also a first time mother to an infant, as if that wasn’t enough pressure to be feeling on its own. Once I learned about cochlear implants I began to feel hope. I think I may have responded differently to the news if I had been living in a city with a vibrant deaf community such as D.C., or Rochester N.Y. But I’d been living in Athens for 15 years and could only imagine my son feeling lonely and isolated.

Q: How did your family react to the news? Were they supportive, overprotective....?
A: Our families were incredibly supportive. They were behind us in any decision we would have made.

Q: How did you decide on the communication strategies (signing, etc.) you would use?
A: That’s a decision that we are continuously faced with due to Ethan’s diagnosis of apraxia of speech. We’ve made all of our decisions by getting armed with information (a book called Choices in Deafness is spectacular for it’s informative yet non-biased approach to communication choices) and by following Ethan’s lead. I’ve also been in a couple of wonderful online communities comprised of parents of deaf/hoh kids and have learned so much from their experiences. It’s not easy to be in this position because you meet people who are very passionate about their own choices and sometimes will go so far as to site research to prove that their method is best. Since every situation is unique, I find myself getting really turned off by extreme points of view, from either side of the fence.

Q: Are there any situations you and/or your son find challenging because of his hearing loss?
A: Yes! Try every situation! Seriously, his hearing loss comes into play in every aspect of our lives. You can’t assume that he hears you just because you are speaking to him and even if he does, you can’t assume that he understands what you are saying. It will get easier, but the toddler years have been pretty tough for us. He is a typical 2 year old and is going to manipulate and test us every chance he gets. Throw hearing loss into the mix and you’ve found a recipe for some serious mayhem!

Q: Do you feel appropriate accommodations have been or will be made to assist your son in the classroom?
A: Well time will tell. Ethan starts preschool in late August and it looks like we’ve found a school system that is going to great lengths to support him. We had the exact opposite experience in Athens and it’s one of the chief reasons why we left town.

Q: How does his hearing loss affect the relationship between the two of you?
A: I think it brings a profound closeness to the already tight bond between parent and child. Sometimes I’m the only person who gets him, who knows what he’s signing about and who knows why he’s frustrated. I know many parents of hearing children feel this way, but I think that his reliance on me for his ability to communicate basic needs is unique. Most people who interact with us (family and friends included) know what his signs mean, but that is about to change as he grows and interacts more with the outside world. Moving to this city was a powerful step towards finding people who will easily be able to communicate with him, at least that is what we’re telling ourselves!

Q: Have there been any effects on Ethan's self-esteem and independence?
A: I don't think his self-esteem has been harmed in any way. He is too young to realize that he has differences. I don't think it would be affecting his independence either if he didn't have other medical issues that really do impact that part of his life. He has trouble with balance and has many allergies, so we are pretty over-protective of him at the moment. But he's still so little, so it's hard to say. I just don't see his hearing loss getting in the way of his accomplishments as he grows.

Q: From your experience, what do you think are some of the major misconceptions about hearing loss and cochlear implants?
A: Well there are too many to list. The one that bothers me the most is that some people see what we've chosen for Ethan as an attempt to fix him, and that's not quite correct. Of course we want him to be able to communicate in mainstream society and that generally requires hearing. But we are proud of his deafness and think that it makes him a unique person who has the best of both worlds. If he wants to embrace ASL and take the implants off, then we support that. If he wants to go to deaf schools and have all deaf friends, then we understand and support it. The important thing to us is that he has the choice.

2008-07-22T08:02:00.000-07:00

Mister Long Legs

Ethan has been sick for the past week, hence this photo of him actually sitting still. If you see him lazing about on the couch then there is usually some sort of physical ailment involved. Poor guy. He sat and watched his signing time videos while I continued to research and prepare for his big diet change. I've made a few trips to Whole Foods and might have to get a part-time job to finance this thing. I don't think it will be that expensive overall, I just needed to restock my pantry with new flours and oils and that should get us through a few weeks. The gluten free aspect isn't as hard to tackle as the casein free portion of this diet. I also have to avoid feeding him soy (he has an allergy to it), which rules out an entire genre of possibilities both in solids and liquids. There are also a handful of foods to avoid due to his acid reflux: corn, tomatoes, and citrus are the biggest culprits. I feel like I'm getting some kind of dietary college degree for all the research this is requiring.

Ethan has always been a very resistant eater. He doesn't eat fresh vegetables, fruits, pasta, rice, or anything creamy. He only likes crunchy. He likes strong flavors and is much more likely to try meat over any other food group. He gave us a wonderful anniversary gift this year by finally eating (and enjoying!) a fruit. The boy now loves fresh blueberries. He's been eating them dried for months but has always squashed them and gagged when I've introduced them fresh.

He also said the word 'doctor' this week, twice in fact. We were in the examining room waiting to be seen. When the nurse entered the room he started signing the word 'nurse' several times. Then she said that the doctor would be in shortly and Ethan signed and SAID doctor, twice in a row!

Ethan and I met with our public school again today for the play-based observation. I am so impressed with these individuals; we haven't even had the IEP meeting and they have confirmed that Ethan would have a one-on-one interpreter, a preschool teacher who signs, and a teacher of the deaf! Regardless of where he ends up, I still want to take advantage of St. Rita's parent support group and sign language classes, and God willing, use my connections there to find a baby-sitter :-)

I'm feeling more hopeful and optimistic than ever when it comes to all things Ethan. Thanks so much to all of you who have emailed me and cheered me on in the comments section for the past few weeks, arguably the most stressful time in my life. It has meant more than words can express.

Tuesday Worries

2008-07-15T11:23:00.000-07:00

My deaf boy is sleeping soundly while men 8 feet above him are tearing off shingles and pounding hard enough to send vibrations throughout the entire apartment. He’s a sleepy boy today due to a long night of restlessness and tummy upset. I should be sleeping too, but I can’t turn down a little time to myself (and time to research online).

I’m looking for a referral from his developmental specialist to see an allergist. Ethan slept so poorly last night because I allowed him to have a grilled cheese sandwich for lunch yesterday. I have not allowed any dairy in his diet for months as he has had numerous digestive reactions to cow’s milk. I don’t know what got into me, other than the desire to see him enjoy food and eating for once. He also has similar reactions to wheat, almonds, and soy. It’s amazing to me that G.I. specialists at Children’s have never seemed interested in this information, but then I’ve been unimpressed with them from the get-go. There was a time when I thought that someone with such a title at one of the most prestigious children’s hospitals in the country has to be good, but that assumption is easily put to the test and dismissed when it’s your child undergoing the testing and treatment.

Two weeks ago Ethan was stung by what we assume must have been a bee. None of us saw it happen, but he was playing in the yard and all of a sudden didn’t want his left foot on the ground. Then he wanted to be picked up, which is never a good sign. Grandma carried him into the house and Rich and I were immediately alarmed; he was slumped over her shoulder with his eyes closed. To most people this would look like a sweet little scene, but to the parents of a toddler who simply NEVER stops moving, much less lay his head down on a shoulder and close his eyes, it was extremely scary.

He was very sweaty and we got him to open his eyes while sitting in front of the fan and putting cold compresses on his forehead and back. It all happened so fast and none of us were quite sure what had actually happened, or I think I would have been on the phone with 911. Luckily he recovered fairly quickly, but he was basically passing out and his respirations seemed to slow temporarily.

We have an EpiPen for him now and I get nauseated just thinking about having to use it. But that’s much better than the alternative.

I guess the time really is here to get serious about the gluten-free casein-free diet. There is nothing preventing it now that we live within minutes of some of the most diverse shopping I’ve ever seen.

If you’ve ever tried this diet and have any experience or advice to share, I’d love to hear it. If you’re not comfortable commenting then just send an email: heather@mediabrite.com

Monday Adventures

2008-07-15T08:56:00.000-07:00

The Land of Options

2008-07-11T09:03:00.000-07:00

The View from our living room.

We're here and almost totally unpacked. It has been quite a week! Rich was in D.C. for work this week and returns late tonight, so Ethan and I were exploring our new town on our own. I couldn't have survived the week without the Garmin GPS. We've been all over the place and I've never felt lost, and this place is huge!

Ethan had his first speech therapy appointment yesterday and it went really well. He did a great job and his therapist and I had a very interesting conversation about the offerings of the public preschool class here versus St. Rita. I cannot believe I'm saying this, but it's actually going to be a tough choice. This public program is spectacular and they've offered an interpreter which could also serve as an extra pair of hands to keep Ethan safe outside of the classroom. They want to write a health plan for him that encompasses his allergies and the use of his eppy-pen. The nurse will write the program and train the teacher and aids on his needs! None of this was offered in Athens. The OT here wants to create a sensory profile and deal with his sensory integration; Athens qualified him for OT but prepared no goals and offered no services. The level of professionalism is such a departure from what I'm used to in Southeast Ohio that it is stunning.

We are meeting with the school system on July 22nd for a play-based observation, then we'll schedule the formal IEP meeting. Rich and I have a lot to think about between now and then.

Bringing Ethan to a place with resources, both economic and human, is the best thing we could have done for him. It never crossed our minds that we'd be stuck having to choose from a pool of terrific educational options. It's simply amazing.

And I've had Thai carry-out for dinner 3 times this week!

Goodbye, Athens.

2008-07-03T15:20:00.000-07:00

Cincinnati Skyline

We found an apartment and are moving in on Saturday. There is so much to do that I don't even know where to start. I'm too overwhelmed right now to process the emotions that go with leaving my home of 17 years, which isn't entirely a bad thing at all. We've got incredible friends on both ends of this move to help ease the transition, something I'm not taking for granted for a moment. Ethan is already scheduled with his new speech therapist and a new pediatrician and I'm scheduled to meet with the new school district early next week.

We said goodbye today to Ethan's PT and OT, which was harder than I had imagined. They have been a dream team for Ethan and have seen him through so much growth and progress. Today they had a "mommy party" for me and we ate a delicious cheesecake while I opened my present (an IEP emergency kit), which was just the humor I've been in need of lately. I drove home belly laughing through tears.

What a journey it has been, and continues to be....

Swimmer Boy

2008-06-27T19:13:00.000-07:00

Signing the word Jump....

Preparing for take-off...

Going for it!

Ethan gets totally blissed out in the water, whether he's in a jacuzzi, back-yard baby pool, or the big pool in town. He shows no fear whatsoever, which is good and bad. I'm focusing mostly on the good; at the rate he's going, he'll be swimming under water this time next year. It really seems to be one of his strengths.

He and I visited mom and dad in Virginia last week for a little R & R. I took these pictures of Ethan swimming to Grandma Sarah. You'll not see her in any shots because I wanted to remain on speaking grounds with mom for the next few years!

On her way home from work one day, my mother passed by a daycare or preschool where she saw children Ethan's age outside playing. She was struck by how physically different they seemed when compared to Ethan. I guess when he's the only toddler you're ever around, you may not realize just how physically challenged he is; a few glimpses of a neurotypical child his age and you get the picture pretty fast. He has a really immature and unsteady gait and holds his right arm up high for balance. He cannot stay standing when the surface he's on becomes uneven, though he's getting better at it by the day. He cannot run, or jump, or gallop, or hop. Yet he's got this incredible strength in his limbs and is very acrobatic on the floor. He has been doing somersaults for over a year and is now working on a head stand. That type of activity must really feel good (it stimulates his vestibular system) because he can do it for several hours a day.

Which leads me to the current dilemma. How do you keep a tumbler with severe acid reflux from throwing up? He's in the throes of another flare-up and has been throwing up today.

I know our experience with it has been on the more extreme end (and rare), but I honestly think that living with acid reflux is much harder than being deaf.

------------------------------------------------------------------
Rich and I are looking at apartments tomorrow and may even sign a lease. If so, we'd be moving this time next week, which is weird. Also, I'm done dealing with our schools here and refuse to sign the IEP, but I'm working on filing a complaint at the state level so that they will think a little bit harder about treating families and children the way we were treated.

From Me to Them

2008-06-23T14:06:00.001-07:00

Dear Subconscious Self,

Hey there! Have you seen Nervous System lately? You two need to talk. There is no need to let things get out of control around here. You guys need to put your heads together and come up with an action plan. Let me know how that goes.

Sincerely,
Conscious Self

*****************************
Dear Former Buyer of our House,

Hey there! While I respectfully understand your decision to back out of our deal, I also feel it’s my duty to fill you in on the situation with our house. Your inspector mentioned a suspicion of mold in our crawl space, and then your son had a very bad asthma attack. We were alarmed by this turn of events and brought in an expert mold identifying team. They took air samples both inside and out as well as physical samples from the joists under our house. They seemed to be convinced that there is no problem and were actually perplexed as to why they were summoned here in the first place. When I told them about your son’s asthma attack, they responded that this location was a very bad place for someone with asthma to live. We are nestled in 5 acres of woods and have been greeted with an inch of pollen on our windshields each morning. Not to mention the fact that we have pets that could have also triggered that reaction. While the results of the tests have yet to be seen, we remain confident that there is not a mold problem with our home. Good luck to you in finding another home for your college son to occupy while he’s a student here.

Sincerely,
Jaded Homeowner

************************

Dear Local School District,

In what world do you live that you think it is acceptable to show up at my son’s IEP meeting so vastly under prepared? You only brought 3 pages of the entire IEP document with you! You failed to bring any copies and just planned to sit there and read them aloud to the group! Didn’t you get the memo about me? I like to have my own copy of my son’s future education plan so that I can actually read the material and follow along. Since I am an active member of the team, I might even like to make an actual contribution! Luckily for you guys, we met at my house where I was able to make copies of the pathetic 3-page file you managed to bring to the meeting.

You also failed to bring a teacher or 2 of the 3 therapists that were part of Ethan’s evaluation team. The two who happened to totally avoid interaction with him during the evaluation because they spent the entire hour speaking to me, were on vacation and unable to attend the meeting and speak to the summaries they put together.

I’m glad you enjoyed my coffee, donuts, and typed, printed, collated, and stapled handouts on Ethan’s present levels of achievement as well as my vision statement. I suggest you take notes from me and put together a better performance the next time. I’m leaving the district, but the next family that you treat with such blatant disrespect might be here to stay.

Even though we are moving and you are well aware of this, you still managed to leave direly needed services from Ethan’s IEP. I’m more convinced than ever that leaving here is the only option for Ethan.

Sincerely,
Ethan’s Mom

New, Improved Attitude!

2008-06-16T17:25:00.000-07:00

Wow, it only took 2 days!

I'm seriously feeling pretty good at this point. The deal falling through really knocked me out; I alternated between the fetal and prone position for the better part of the day Saturday. Then Rich made a comment that made perfect sense and brought me back to reality.

He said that this has never been about finding our dream home. This has always been about getting Ethan into a city and a school that can properly address his multiple needs. And that dream doesn't have to change just because we didn't sell our house quickly and easily.

Stupid House! Stupid Inspections!

He's right. So we're looking at apartments soon and are keeping our fingers crossed that we can find something with a 6 month lease option. That will give us plenty of time to look at homes and make a good decision while we wait for this home to sell. It's not what we had envisioned, but then what in the world ever is?

Ethan will go to St. Rita. We will move to Cincinnati on a timeline that ensures his arrival on day one of preschool. I will not lose my mind in the process.

Too Good To Be True

2008-06-14T07:47:00.001-07:00

We don't have the results of the inspection yet, but our buyer has withdrawn their offer. Once we see the results we'll deal with whatever it says and start over.

It's tough news to hear right now. We're under pressure to get to Cincinnati so Ethan can be enrolled in that one of a kind program. We spent the day there yesterday looking at homes and found a "dream home" that is just minutes from his school. I can't imagine that it will be on the market for very long, it's pretty special.

I'm just going to go bury my head in the sand now.

Finally!

2008-06-08T07:38:00.000-07:00

We got a substantial offer on the house last night and just came home from the realtor's office where we signed a contract. Of course there are inspections and an appraisal to be done before we are in the clear, but we finally got the ball rolling and can barely contain the excitement!

The buyer isn't messing around and wants us out July 7. The purchase is not contingent upon the sale of another home, so that frees everyone up somewhat to make the wheels turn a little faster.

(I ordered a Saint Joseph statue on Thursday and this buyer walked through on Friday. Apparently just conjuring up the saint mojo is good enough?)

New Firehouse!

2008-06-07T12:05:00.000-07:00

Ethan's Grandma was here this week for several days and she brought her boy a really cool new toy. It's a Fire Station!

This looks like he is signing "light", but he's starting to do his own signs for things and the signs that we recognize sometimes look a little sloppy. It's his version of slang I guess.

We have been talking a lot about creative play lately. It's a major force in a child's life in terms of language development and one of Ethan's therapists is concerned over the lack of this type of play in his daily routine. Ethan's toys seem so goal oriented (tools and trucks to get the job done!) and the toys he plays with at his friends homes (who are all girls) are more open to imaginative interpretation (a doll-house and kitchen for instance), so we set out to get him a toy that would encourage him to explore creative play a little further.

Everything is made of wood and the little dog and firefighters are adorable. The back of the truck has storage for caution cones and signs and the little people have hands that snap onto the fire hoses. I've had as much fun with this thing as Ethan! It's from Highlights online store if you're interested.

Keeping it together.

2008-05-31T10:12:00.000-07:00

Ethan saw one of his audiologists last week in Cincy and performed quite well in the sound booth. He has had his 2nd cochlear implant for only 6 months and can now hear with that side as well as with the right side. He hears down to 20 db, which is truly miraculous if you ask me. The last time I checked there were only 1300 people nationwide with bilateral implants and two thirds of them were children. Ethan will be part of the research that informs surgeons and hospitals everywhere that bilateral surgery is not so risky and is actually a good thing.

We haven't sold our house yet. We've shown it 24 times in 2 weeks and have heard some feedback indicating that the people who are the most interested are also feeling a bit sheepish about a certain aspect of our floors, even though the structure that is our foundation appears to be in fine shape. Without getting into the details, let me just say that it has made for an emotional roller coaster, and we've been on that ride for nearly 3 years anyway and are ready to see it END.

Ethan has to start school on August 18 if he's to attend the class at St. Rita. The world will not end if he is not there next year, I know this, but my hopes have been building on it for so long that I fear what will happen to me if this doesn't come together.

Somehow in the midst of the chaos Ethan has decided to experiment with a defiant and explosive personality. In my usual coping style I've been reading a book called The Explosive Child and have sufficiently worked myself into a neurotic frenzy over his cognitive abilities to problem solve situations. I've learned a lot of useful information from the book, but I have little faith that any of the suggestions will actually work with Ethan. The communication barrier is coming into play in significant ways now and a huge part of the problems we see are due to his lack of language skills.

I know he is also just a 2 year old and is in many ways just a typical little boy. It's not helpful though when I'm getting head butted in the face or bitten and kicked. At one time I would have been really embarrassed by the looks we get when he acts this way publicly, but now I just want to scream out to people for help. This kid is really teaching me a thing or two about my own patience threshold and ability to deal with stress.

Wish me luck, I'm going to need it.

------------------------------------------
I've developed google reader phobia (thanks for the term slouchy) and have not been able to visit or comment on your sites. I'm certainly thinking of you though.

May Madness!

2008-05-21T13:16:00.000-07:00

Here's our pad as it appears in the multiple listing service.

Hypes:

Ethan was accepted into the preschool classroom at St. Rita School for the Deaf!
Our house is looking great and has been shown 11 times in 7 days!
We are going to Cincinnati Sunday to meet our realtor and look at several homes.
Ethan's team of therapists are helping us write goals for a strong IEP.
Rich is spending less time traveling and more time home.
The Internet continues to bring me in contact with amazing people who are giving me support and helping me to support others.

Gripes:

I don't have as much time to read/comment on my favorite blogs.
I have to keep the house spotless at all times and be ready to vacate with Ethan on a moments notice.
Ethan has been missing naps and his behavior has been TERRIBLE.
Ethan's sensory stuff is in full gear and is driving us all crazy. We just started brushing him again and we're hoping that will help.
Melatonin isn't the miracle cure that I thought it was one month ago.

-----------------------------

The style of this post was done in honor of two special people, R@T and Coletta. Love you both.

This is just ridiculous.

2008-05-02T11:45:00.000-07:00

Should I send these with Ethan's application for enrollment to St. Rita School for the Deaf? I mean, how can you turn this guy down? All he needs is a brief case and he's ready to roll!

Our IEP meeting is not until June 17, which gives me plenty of time to prepare and more time to obsess over getting this house ready to sell. Yay!

Motivated.

2008-04-29T19:52:00.000-07:00

In just the mere passing of 7 days, this is what has happened here at the homestead. We are nothing if not motivated.

Completed the “front porch project” that has been in limbo for nearly 2 years. What was once a concrete slab with a particle board ceiling is now a lovely 3 season screened-in, beautifully tiled and furnished front porch.
Had major foundation repairs and new sub-flooring on one side of the house.
French drains created in various parts of the yard and around the house. Grass seed planted.
Master bedroom has new paint, new carpeting, and new bathroom flooring installed.
New paint and miscellaneous improvements made to kitchen.
New paint in main bathroom.
New paint in hallway and guest bedroom.
Plumbing issues corrected.

Now keep your fingers crossed that this little gem of a house will seem as charming to a prospective buyer as it does to us!

Transition Time

2008-04-23T17:03:00.000-07:00

I’ve been gearing up for Ethan’s transition from early intervention services into the local school district. We’ll have a transition meeting on May 1st followed by loads of evaluations, followed by the meeting where we create Ethan’s IEP, or individual education plan for special services.

Some might think that my background in education would make me uniquely prepared for this experience, but that would be wrong. I had very little interaction with IEP’s as a teacher because most of the time I was the technology teacher who worked with the staff to meet their curricular goals using the computer lab. I didn’t have to teach content area standards or make any adjustments to my classroom to accommodate kids with IEP’s. In fact, what I find most interesting looking back on my experiences is that those kids who were “special ed” were far and away the most naturally gifted users of all the technology in my lab. I can remember 2 boys in particular who as 5th and 6th graders were reading far below grade level, yet they would unpack scanners, printers, and digital cameras and then proceed to teach the staff on their use. I saw their self-esteem soar and in the process realized why I loved being their teacher.

I changed positions from technology to language arts in the final year of my employment there. I was pregnant with Ethan and planning to take a one or two-year break, completely unaware that I was about to have a special needs child of my own. I sat in on several IEP meetings that year, even though none of the kids in my classes were identified with an IEP. I was amazed at how inefficient and poorly run these meetings seemed. I saw parents become defensive and emotional, and rightfully so. I was ashamed of the way the people in my school conducted themselves in these meetings and could not believe the lack of focus and interest in the actual student they were meant to be helping.

So now I’m preparing to go into a meeting with a room full of school staff who have never met Ethan or me and who have no earthly idea of what we’ve been through or how far we’ve come. I have the task of making sure he gets the strongest IEP goals we could possibly write and that all of his therapy needs are addressed in an appropriate way and not just framed by what the school can conjure up to offer. And then I have to take this IEP into a new school district in a new city and convince those people that it’s necessary to place him out of district in a school for the deaf where the other children sign and can communicate with him.

Whenever I imagine Ethan in a preschool class where the children speak and don’t know sign language, I think of him being unable to develop basic language skills. How will he participate in conversations? How will he be able tell his own stories? How will he enjoy reciting rhymes and songs?

Will he just look at books by himself?

No way man, not my kid.

It's all about Me!

2008-04-19T19:01:00.000-07:00

I've been tagged by Leah over at Say What Munchins blog for the following meme. While I'm ordinarily not much for memes, there are some parents of deaf and hard of hearing children participating in the meme and this is an opportunity for all of us to get to know each other a bit better. I'm all for that.

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What I was doing 10 years ago:

I was working in a nonprofit organization and living with Rich in a beautiful home in the woods.

Five snacks I enjoy:

1. Red licorice

2. Soy chai

3. Popcorn

4. Cookies (my chocolate chip recipe)

5. Edamame (fancy term for soybeans)

Things I would do if I were a billionaire:

1. Freak Out!

2. Hire a financial advisor! (and likely a lawyer)

3. Become a philanthropist

4. Hire a full-time reflexologist

5. Travel with Rich & Ethan

Five jobs that I have had:

1. Waited tables in multiple places, my favorite being Mackinac Island, Michigan

2. Worker-owner in a cooperatively owned restaurant

3. Teacher- adult basic literacy class

4. Teacher- English as a Second Language

5. Teacher-Computer Science

Three of my habits:

1. Baking cookies

2. Reading blogs

3. Cleaning up after Ethan

Five places I have lived:

1. Mackinac Island, Michigan

2. Roanoke, Virginia

3. Several towns in Ohio (a total of 6, about to make that 7)

4. See #3

5. See #3

Add a new part to the meme: What countries have you been to and which is your favorite?

France, Spain, Swaziland, South Africa, Jamaica, and Canada

I left a piece of my heart in Africa, but my favorite place to visit of those countries is Canada. Rich and I took Via Rail in the winter of 95 from Vancouver to Toronto, stopping for a break in Alberta where we explored for a few days. The views of the Canadian Rockies from the train were breathtaking. We've also done a driving tour of Nova Scotia (and PEI) and fell in love with the scenery. I've spent some time in Halifax (for work) and LOVED the city and the friends that I made. The next time we're up north we have to see Quebec City and Montreal.

-heather

Doctoring Update

2008-04-12T10:42:00.000-07:00

This might be a first for me, publishing two posts in one day. I guess I'm just making use of the time while I have it available. It's not likely to last with a move on the horizon. We're doing lots of beautification around here, which is no simple task with a 2 year old on the scene.

I have a few noteworthy things to report from Ethan's visit at Children's last week:

Ethan is "significantly apraxic". I've been well aware of it for many months, but having it put in those terms during a diagnostic visit has left me feeling sad and depressed. But Ethan has always defied nature and our expectations and I've no doubt he'll continue to do so as he grows.

Apraxia is a serious neurological disorder that effects the ability to speak. Acquired apraxia is common in adults who have suffered a stroke. Developmental apraxia is found in young children who are learning speech and it often accompanies other neurological conditions such as hypotonia and sensory integration dysfunction, both of which Ethan has always had.

What is bringing me hope right now is the thought of moving to Cincinnati and getting Ethan enrolled in St. Rita's School for the Deaf which has a preschool class designed for apraxic children, most of whom actually can hear. They use speech and sign to help these children communicate and the environment is Montessori based. It's an IDEAL setting for our boy and I hope that the price tag doesn't prevent him from being enrolled. If we move into a cooperative enough school district we should get some support, so that is the guiding factor as to where we will actually live. It's tricky and there are no guarantees, but we're hoping for the best and could use a little magic or prayers if you've got either one to offer.

The developmental doctor urged us to give melatonin another try for Ethan's horrible sleep habits. We tried it about a year ago and saw no changes and decided to stop. Melatonin is a hormone secreted by the pineal gland that regulates sleep. We gave Ethan a dose last night and he fell asleep in about one hour, which is a big improvement over the usual 2 or 3 hours that it takes for him to settle into sleep. He slept a total of 11 hours last night only tossing and turning for about 45 minutes in the middle. So I'm cautiously optimistic about this new possibility. If he started sleeping like a typical child his age, that would pretty much rock my world. So again, keeping my fingers crossed.

We were also pleased to hear that Ethan is in the 10th percentile for weight, which is still quite small, but a huge leap for him considering that most of his life he has been in the 3rd percentile or not even on the chart to begin with. I give ALL the credit here to Marylee, the beautiful and spunky OT that has taught me so much about how to make creative and healthy foods that appeal to his needs. I'm sure we'll find a good OT in Cincy, but honestly no one can replace Marylee in my mind.

Lastly, Ethan has been given new maps for both processors. His "new ear" has virtually caught up to the "old ear" and he performed equally well with both in the sound booth. He now has a map for each ear that is specifically designed to enhance the experience of listening to music. Now how about that? So totally Sci-Fi isn't it?

I'll leave you with a picture of our boy playing peek-a-boo in his fort. He's wearing my favorite article in his wardrobe, the Harvard sweatshirt Rich bought him recently in Boston.

Crime Update!

2008-04-12T06:54:00.001-07:00

Looking back, I wonder if I wasn't being just a bit sarcastic when I wrote that I had a "captivating" story about the capture of our thief. It's likely only captivating to my neighbors, who are mostly in their 80's and 90's and very worried about the theft since none of them have experienced crime in over 40 years of living on this street.

One evening I ran out to the store and had so much to carry into the house (including Ethan), that I decided to just leave my purse in the car. I forgot to close the garage door that night, and wouldn't you know, the next morning my purse was gone!

Rich quickly took care of making all the necessary calls and cancellations for me and we filed a police report. It seems that the thief (or thieves as it may be) hit the whole town that night.

Within a day or two we had a phone call from our bank about a man who had forged one of my checks. They told us that they were notifying the police and handing over surveillance video.

We basically never had an ounce of faith that our police would solve this case and locate the guy. Ask anyone who lives here about our police department and you'll be met with a less than positive review accompanied by a few sneers or smirks. They're basically too tied up with busting college students to make time for real crime. I figured they'd only find the guy if he walked into the department and turned himself in.

But they found him!

They were watching the surveillance video of his face when someone realized that the guy in the orange jumpsuit in shackles across the room looked remarkably similar to the guy in the video!

He had just been caught and sentenced to prison for something totally unrelated. He confessed to the crime and named 2 accomplices who have yet to be found.

As for me, I made out like a bandit. Rich felt sorry for me and surprised me with a new iPhone! So now I'm that person that I've always been irritated by, the one who is always staring into a small device in her hands and ignoring the world around her.

So don't feel sorry for me; getting my purse stolen turned out to produce a little entertainment and a fancy new gadget. I'm a lucky girl.

Still Kickin'

2008-04-07T17:17:00.000-07:00

Just a quick update to let folks know that we're all alive and well. Things have spun into high gear in this house as we prepare to sell, all whilst keeping up with a demanding travel schedule for Ethan's appointments. Tomorrow we will make the 3 hour drive to our future home in order for Ethan to have a speech evaluation (for apraxia) as well as a cochlear implant mapping session and a visit with our favorite developmental pediatrician on the planet. Seriously, she *is* that cool. We hope to have enough time to tour a few neighborhoods but overall it will be a whirlwind trip.

Ethan and I escaped to the Blue Ridge last week to stay with Gram & Gramps while our house saw a fair amount of sawdust and plywood. Things are changing here as we head into the world of realtors, banks, and inspections. It's stressful, but we're maintaining our cool as usual. Haha! I'm not even kidding, we are unbelievably zen under the conditions. Well, I guess Rich is the one staying calm and collected while I head out of town to relax with the grandparents :-)

My dad and I spent a lovely day together last week and I've got one picture to show for it. (Still trying to get the pics off my new phone/camera that I got as a result of my purse being stolen last week!) We visited VMI, UVA, and Monticello. I was most excited to see Monticello as I just finished the book John Adams and have been loving the HBO production.

And to top off this ramble of a post, you'll be pleased to know that our city police just stopped by to inform me that the person who forged my checks in the bank last week is in prison. It's a captivating story that I don't have time to tell. My boy is yawning in his high chair experiencing a little benign neglect...

Will be back soon. With pictures, Eileen. :-)

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Oh, I've been offline for over a week and have yet to get caught up on my blog reading, so I hope that you are all doing well and enjoying some nice spring weather.

Cleveland Rocks!

2008-03-21T20:38:00.000-07:00

We spent last weekend visiting some of our favorite friends who live in Cleveland.

Hi Colette! Hi Mike! Hi Finn! Hi May!

Mike took us on a tour of his work-place, which happens to be a firehouse since he is a Cleveland City firefighter and all. You can just about imagine the bliss that ensued in Ethan's world :-) And since Mike's place is down on the river, there was also a fire boat!

It was hard to capture his joy on camera since he NEVER STOPPED MOVING, plus there was a glare in almost every shot. But we got a few...

One of my favorite moments was visiting the West Side Market and meeting Dennis Kucinich there. (He's actually quite handsome in person.) Taking in all the sights and smells at the market made us feel even more excitement for the move that we are about to make. I think we're ready for city living.

Where to start?

2008-03-12T19:29:00.001-07:00

I feel like I've been offline for months while in reality I've only been "unplugged" for a few days. As a total luddite friend of mine would say, I've been immersing myself in the "outernet".

Time away from the computer is necessary for me. I have been totally immersed for 2 years in forums and mailing lists discussing everything from potty training a deaf child to adjusting medications for toddler acid reflux. Lately, I've been picking up a book instead of reading articles on biomedical interventions for neurological impairments and the change has been REFRESHING!

So lots of stuff is going on in Ethan's World. He is experiencing a language explosion and it has been such a thrill to see and hear. He still isn't making those consonant sounds in speech, but he says a perfectly clear M and N now. Instead of only using a sign he now attempts to say the word that he is signing. You really have to know the sign in order to understand since he only says the vowel sound in most cases. But this is major progress! He now says "Uh -oh" at appropriate times, such as this morning after turning over the coffee table. His signing has picked up lately as well; we're seeing more signs and with more intention behind them. I'm really inspired by this long awaited progress and wonder how much of it might be due to the addition of another cochlear implant. There's no way to tell for sure, but it seems to me to have made quite a big difference for him.

Also in BIG NEWS: Rich has been making some career changes and will now be able to work from a home office in any location, which means that we will be moving to Cincinnati! Ethan's entire team of specialists are there and we have been making the 3 hour drive (each way) for 2 years. Plus, there are so many educational options there for Ethan that our tiny town simply cannot provide. There are 2 deaf schools and one even has a preschool class for kids with apraxia; as if it were custom designed for Ethan. The other is a wonderful oral deaf school with an outstanding reputation for preparing deaf children to be mainstreamed into their neighborhood schools by 2nd grade.

Sure, we are facing some unusual stress with having a home to sell and then another home to buy. But this is the kind of stress I've been praying for and I'm embracing it now with open arms. (We're doing fine given that we have a home to sell/buy in the first place!)

Since Ethan's birth, Rich and I have felt stress the likes of which neither of us could have imagined, and living here has had us continuously worried about Ethan's future. It has taken a toll on us as individuals and as a couple. Living in Cincinnati is going to alleviate so many of the anxieties that have been on our shoulders here. I can imagine having that psychic energy freed and how that will positively change our lives all the way around!

So much to think about.

His bear can hear!

2008-02-26T09:14:00.000-08:00

Ethan is so happy to see his buddy Kacie the Koala wearing his cochlear implant. We've had this bear for over a year without the toy implant as it was on back order. Cochlear finally sent it to us yesterday and now all of a sudden the bear is getting some attention from a certain little guy.

We are about to leave for our 3 hour drive to Cincinnati where Ethan will see a speech therapist and his ENT/surgeon. Satellite radio will be my companion and Ethan will spend some quality time in the back seat with a portable dvd player. Signing Time dvd's to the rescue!

Hair Fun!

2008-02-19T15:06:00.000-08:00

The "Tele-Evangelist" Look.

When cabin fever really starts to take up residence, I play with Ethan's hair. And as luck would have it, he has great hair and doesn't mind my antics. Staying home with a toddler in the winter is enough to make me consider some therapy of my own, and I'm not talking about speech or physical therapy.

Here we have him wearing a very sweet little red barrett. I trimmed his bangs this week, bye-bye cute hair accessories.

The "Gender Identity Disorder" Look.

Seriously though, life isn't really as boring for us right now as it seems. We've been working behind the scenes on some pretty major changes that I can't reveal just yet, but I can say that it's tremendously exciting. And unnerving.

Ethan has been working overtime on his alphabet. It's so thrilling to see our 2 year old (who is deaf!) develop pre-reading skills. He signs letters as he sees them in his environment, I've even seen him sign the letters of a word in one of his books. And the speech is still developing around these letters. I heard a perfect "G" yesterday and an "M" today. He's getting the "Z" and working on the "T" today. He doesn't babble or really say any words, just the letters of the alphabet. It's a very unique approach to speech, one that actually makes quite a bit of sense when you think about it.

He has been learning numbers and signs 1-10, having a little trouble with 6-8 due to the dexterity that he has yet acquired. But he recognizes and signs these numbers appropriately. The grocery store had become very difficult until one day I realized that he was looking up at the signs hanging above the isle to see the number and sign it. The anticipation of the numbers around the next corner got us all the way through the store without incident. Nice!

Ethan is also indicating that he loves to hear as much as he loves to sign. The coil on his head (magnetically held there to transmit sound) often falls or gets knocked off during the course of his day. Now I can count on him to run to me, take my hand, and place it near his ear to ask for help in replacing the coil. It's only a matter of time before he learns this skill himself, but for now I'm happy to be his assistant.

These are exciting times, not just in this household, but all over this country. Change is in the air. Do you feel it?

Two Favors

2008-02-10T18:38:00.000-08:00

I've a couple of things to ask:

1.) Chris H. I noticed that you have copied and pasted text from this blog and left it (along with the url to Ethan's World) in the comments section of other blogs. I found it to be very disconcerting and confusing. While I suspect that you have no bad intentions, and that you probably agree with me philosophically about teaching ASL to my child with an implant, I must respectfully ask you not to take my words out of context and leave them on other web sites.

2.) Would you have a look at this clever and creative idea for raising money for a good cause? These teachers are donating all proceeds to their local food pantry and they live in an area where there are many hungry people, namely children. I love their approach and I especially love the message they are sending their high school students, that we all can find ways to help our fellow human beings.

Signing the Alphabet

2008-02-06T11:31:00.000-08:00

Here he is in all his ABC glory. This little guy signs the alphabet all day long. He falls asleep with his hand in the shape of various letters, that's how intense he has become. And who would have known that the love of ASL would lead to his first attempts at speech?

Take that, you auditory-verbal fanatics!

*If I hear or read one more thing about how "research proves" that signing hinders the development of speech I'm going to go nuts. I think it's great that AV therapy has been so successful for so many kids, but I am tired of the anti-sign stance that is being backed by people who are just lucky enough that deafness is the only issue their kids are facing. *

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That little cutie who comes into the picture and is speaking in the background is Ethan's best friend Zeva. She is an extraordinary signer, has an ASL vocab of well over 150 words. She is also 2 years old, and hears just fine.

Back in the Saddle

2008-02-03T18:03:00.001-08:00

I’m finally on the mend and feel like joining the human race, even bathing and basic hygiene sound like something I can handle again. I’ve been so fortunate the past few years to be healthy and totally free of even the smallest of bugs, so I guess I really had it coming. My mom came up and helped take care of Ethan and I since Rich was in D.C. last week. She cooked and cleaned and played with Ethan so that I could rest. I just like having her around and hated to see her leave.

Rich is home and came bearing a few gifts that keep on giving. For me it was a box of truffles that wouldn’t have tasted good last week but now are starting to be very addictive. Ethan scored a cool new book, a play mobil farm set, and his personal favorite, wall decals of the characters from Cars. He has taken great delight in putting them on his walls, dresser, and bedroom door. He takes several breaks from play throughout the day to spend time gazing at the large sticker of Mater and Lighting McQueen that hang above the pillows on his bed. He is slower to close his eyes for naps now that Ramone and Doc smile over from their corner of the room.

I can see how easy it would be to truly spoil your children since seeing their happiness can be totally intoxicating. I guess the key is to elicit such joy more from life than from things.

There is a very clean Honda with sparkling windows and a full tank of gas waiting to be driven again. The poor girl has been neglected as I have chosen to contain my illness to our home and have been canceling one appointment/therapy session after another. Tomorrow morning Ethan and I will make the long trip to the city where he goes for speech therapy and I will watch through the glass as his wonderful therapist works her magic. She has a very positive outlook and is always so cheerful and optimistic about our boy. In a strange way it’s like therapy for me too. I need to be reminded.

Some Good and Some Bad

2008-01-25T10:00:00.000-08:00

There are 2 stories that relate to deafness happening that I wanted to share in this space. They are both worthy of much excitement, although for entirely different reasons.

Let's start with the happy story. Pepsi is running a super bowl ad that will be silent with deaf actors. I'm actually going to tune into the super bowl (possibly for the first time ever) just to see this ad that is supposedly very humorous. Here's the story:
http://www.msnbc.msn.com/id/22824530/

And for the bad: My friend Karen at the blog A Deaf Mom Shares Her World (the one I gave the Nice Matters Award to awhile back) was recently denied service in a drive-thru window at a Steak -n- Shake because she was unable to place her order at the speaker. When she told the worker that she was deaf and unable to hear him at the speaker he waved her on, even threatening to call the police for holding up the line in the drive-thru. He picked the wrong person to mess with! Fox and ABC have covered the story! (Insert evil laugh here).

And also in bad news land, I'm sick and SICK of being sick! Lord help me, I'm going to turn into the whiniest person on earth if I dont' get over this soon.

Sewing & Widgets!

2008-01-21T11:36:00.000-08:00

First of all, I have to make an exclamation: I Can Sew! No one is more surprised by this than me. Motherhood has brought all sorts of new aspects to my life, not the least of which is a desire to make stuff.

I used to call this space the sun room. Now I call it the sewing room.

And without further adieu, behold my first sewing accomplishment!

See that pocket holding Ethan's body worn controllers? I MADE IT!

Can you believe how well that fabric matches his jammies? That was not planned folks. That's just how I roll around here. Heather Homemaker. Heather Hobby.

As for the widget explanation, my friend and fellow blogger La La told me that if I'm going to have a list of books that link to amazon, then I may as well sign up for the associates program and make a little money from the sale of those items. If someone clicks on one of my book titles and then purchases it from amazon, I'll get a small percentage of that sale. I set up an account that will turn the rewards into gift certificates that I can use to buy more books. That way I can quit taking Ethan to all these dumb doctors and just treat him myself based on what I'm reading! (ahem, not really)

I'm off to read another chapter in Sewing for Dummies. Maybe I should add that to my amazon bookshelf.

Books

2008-01-18T09:50:00.000-08:00

This won't be much of a post, but I wanted to mention that I added a new section to the sidebar with the titles (and links to amazon) of the books that I've been reading over the last 2 years. If only one person "out there" finds this useful it will have been worth the time that it took to copy and past all those titles and urls!

Hey, it's FRIDAY! I hope all of you have a great weekend.

Gluten on the Brain.

2008-01-16T09:57:00.000-08:00

In the last post I said “I’ve read about children with autism who seem to show food addictions to the very foods their bodies are unable to properly digest.” I wasn’t clear about the how and why of this until I started reading one of my new books.

I’m reading a passage of text about dietary treatment for autism that says: “Some people with autism may metabolize gluten and casein (the protein found in milk) into the form of an opiate-much like heroin. Basically, when they eat gluten and casein, they’re getting a high off it-and they’re becoming addicted.”

I’m also reading that celiac disease and gluten sensitivity are often misdiagnosed as IBS (irritable bowel syndrome) and CFS or fibromyalgia as well as migraines. The women in my family have IBS and migraines, so this really caught my attention. I read that acid reflux is a very common symptom of gluten sensitivity. Ethan has had acid reflux since infancy but we’ve never known why. Why didn't his GI specialist order labs to get to the bottom of it? Especially given the severity of the side affects, like the 12 times I've witnessed him cease to breath for upwards of a minute? He turned grey and his lips were blue each time. I think that warrants a little more than throwing a ppi drug at the problem and saying see ya next year. Why am I researching and ordering the labs? That baffles me since we know for sure that changing our diets can reverse so many digestive complaints.

We are going to have to delay our foray into the GF diet for Ethan since conventional wisdom concludes that lab work on the gut should be done during a “natural state”. In the meantime, I’m readying myself by reading about ingredients to avoid and new items to purchase. Most of this stuff isn’t cheap or easily available in our area. However, since we’re in Columbus once a week for Ethan’s speech I can just find a good place to shop and make it part of our weekly trip.

While I’m on a food kick, I’m happy to report that Ethan likes the blueberry oat bars I made yesterday with a cup of pureed spinach snuck into the filling. That Deceptively Delicious cookbook was worth every penny. He also loves the banana bread with the pureed cauliflower. If you’ve got finicky eaters who don’t like their veggies, I highly recommend this book. I can’t even taste the veggies in these recipes.

Kisses, GFCF and insurance

2008-01-13T15:19:00.001-08:00

Ethan is now a fan of giving kisses, though he’s still not sure how he feels about being on the receiving end. The fact that we are so excited by his kisses is really motivating. He’s been known to kiss me 12 times in a row, with a mini celebration of sorts in between each kiss. I’m going to try to post video soon!

Next, we work on hugging ;-)

We’re back to the therapy and home visit routine after a fairly extensive break. It’s hard to keep a fixed schedule between the holidays and the wide range of viruses that have been going around. E-boy and I are both dealing with a cold at the moment, but it’s nothing compared to the sinus infection I had around the holidays. When does it stop?!

I’ve been playing around on my new sewing machine that Grandma Innis got me for Christmas. I also have Amy Karol’s book Bend-the-Rules Sewing and love it! She has a blog called The Angry Chicken if you’re into that sort of stuff. I love to look, but I’m not much of a sewer or crafter – I’m an enthusiastic wannabe. I have sewn a few pockets (made by grandma) onto Ethan’s shirts and jammies and that has been a great way to get a feel for the machine. It’s nice to set time aside for myself and attempt learning a new skill. What took me so long?

I’ve also been doing a lot of thinking (and confusing myself) about Ethan’s diet and how best to approach the inevitable elimination of gluten and casein. I’ve ordered this book and this book to help jumpstart the process. They came highly recommended by a mother in the apraxia group. I’ve also joined a new yahoo group (now I’m up to 5) called CeliacKids; they welcome any parent who is trying the GF diet. I hope to find inspiration and recipes as well as shopping ideas.

It’s so hard to imagine taking away grains and casein (found in all dairy products) when it seems that’s all the boy wants to eat. He lives on cereal, toast, crackers, and granola bars. I’ve read about children with autism who seem to show food addictions to the very foods their bodies are unable to properly digest. There is a scientific reason for this, but what it comes down to is the fact that the only way to truly know what is going on in their gut is to get vital lab work done.

I’ve put off the lab work I wrote about recently since Ethan has been on so many courses of antibiotics. Now seems like a better time to see what’s going on in that tummy. The question I’m currently pondering is whether or not to go to his GI doc at Children’s or to set up an appointment with a DAN! Doc instead. The DAN docs are noted for their knowledge on the biomedical approach whereas the GI doc we have seems to be a very treat the symptoms kind of guy and he has never shown any interest in Ethan’s diet or nutrition. Our insurance likely won’t cover a DAN doc though. They will cover something that they will end up paying out for an eternity (like prevacid) rather than a DAN doc who will get to the root of the problem and be done with it (using enzymes and probiotics for starters).

I had better end this post now before I go off on some insurance rant! I haven’t seen the movie Sicko yet and I’m afraid my head will spin out of control and blow off my shoulders if I do.

If you have done the GFCF diet and want to offer me any tips or tricks, feel free to send an email. My address is on the sidebar over there!

The Special Mother

2008-01-05T10:06:00.000-08:00

Drew's mom posted this on Drew's blog recently and I wanted to share it with you. I have read it several times and it never fails to bring tears to my eyes.

The Special Mother -by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

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The fact that Ethan is able to walk is not something that we take for granted. Cmv is heinous. And when my deaf boy does say his first word, especially "momma", every inch of me will understand that a miracle has taken place.

Ci Web Resource

2008-01-04T16:29:00.000-08:00

I'd like to extend my most sincere thanks and gratitude to those of you who left comments on the last post about Ethan's new Ci. It amazes me that this blog has made it possible for me to "meet" people who are living through the cochlear implant experience as either parents or implantees themselves. I started the blog to keep our family and friends informed and a little over a year later I'm surprised and thrilled to see what has come of it.

And to my non-implant internet friends, I've been inspired and humbled by your continuous support and friendship.

Mom to Toes has shared a new resource with me that I'm rather impressed with and would like to pass along. It's a site called Cochlear World and not only does it touch on a wide variety of Ci topics, it also includes a link to a Ci Forum that looks like a really great tool for talking to others. The forum is newly launched and only a few of us have registered and introduced ourselves so I urge anyone interested to head on over and say hello.

Ci Circle is another resource that has been absolutely invaluable to our family over the past 2 years. The last time I checked, there were over 1200 parents (from all over the world) of Ci children registered there. It's a mailing list format though, which I find somewhat tedious and disorganized when compared to a message board with categories like the one I mention above.

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It's the weekend and I'm ready to sit back and inhale some homemade choc. chip cookies. Just because the holidays are over doesn't mean we have to stop treating ourselves to the occasional treat does it?

Calling all Ci Users!

2007-12-30T20:12:00.000-08:00

I need some input from those of you who have a cochlear implant. Ethan is still having trouble putting on the second implant which was activated on November 20.

Over a month into the journey, he still hates to have the implant put on. I started turning the volume level down to 1 so that it wouldn't be so jarring (the only word that I can use to describe what I'm guessing he feels), and that seemed to help tremendously for a few days. I'd very quickly turn it up to 8 or 9 before putting the battery pack in his shirt and that was fine with him.

Now he is even starting to cry when I put it on with the low volume settings. Granted, he gets over it pretty quickly (but NOT easily, it takes distraction and work on our part), and we're fairly sure that he is reacting due to something other than actual pain. His pain threshold is extremely high and we usually know when he really hurts.

Could it just be that the sound quality is so foreign and strange compared to his other implanted side that it has him freaked out? For what it's worth, his first implant goes on with the volume set at 12 with no problems.

What is it like in the moment that the headpiece is attached to your head?

We see an audiologist on Jan. 9, though not the one that typically works with Ethan as she is on maternity leave. I really hope we get some clarity on this soon.

Christmas in Virgina!

2007-12-28T09:20:00.000-08:00

Ethan loves his rocking zebra at gram and gramp's house.

This photo was taken within the first 10 minutes at my parents home in southern Virginia. We spent nearly 5 hours driving and Ethan couldn't have been better behaved, or happier to arrive anywhere. He headed straight for the room with the toys and doled out kisses for his grandmother upon each and every request.

Our boy wowed his grandparents (and great grandpa) with his love of learning and practicing the alphabet. He spends more time studying his ASL flashcards and place mat than playing with toys. He loves the signing time ABC's dvd and is able to sign most of the letters in the alphabet. He also plays with letters in the bathtub and will sign each letter as we hand them to him. It's so motivating for him that it has actually spurred long awaited language development. He attempts to say most of the letters and is starting to really hit a few on the mark.

I'm actually looking forward to our next speech therapy visit on the 7th to show his therapist his new bag of tricks. We've enjoyed a much needed therapy break since Ethan's ear tube procedure on the 18th. The procedure took all of 10 minutes and was successful, but his recovery was the roughest we've seen of the the 5 times he's come out of anesthesia. It takes a heavy toll on their bodies to be put under for such a short period of time, only to be yanked back to reality moments later.

The nurses always comment on his curly hair and this time was no exception. One nurse said "Why do all the boys get the curls and long eye lashes?" My reply was simply "Because girls get all the good clothes!"

Then Ethan got this sweater for Christmas. I may have to reconsider the girls vs. boys clothing issue because this is pretty sweet. And the curly haired boy isn't bad either.

Baby Ethan

2007-12-16T14:48:00.001-08:00

I was just perusing the archives of photos on my laptop and came across this one where Ethan is being tickled by "Uncle Rat". Look at that glee! Rat has always been a pro at bringing out the best grins and giggles in our little guy.

We have a very busy week ahead with therapies and the ear tube surgery. We get to finish it off by heading south to see Grandpa and Grandma (my parents) who will no doubt be totally charmed and amazed by their boy.

Happy Holidays to all!

Two New Things!

2007-12-13T08:17:00.000-08:00

E-boy is on a roll!

Last night at dinner time, Ethan looked at us and signed "Eat lunch" - granted he had the wrong time of day, but putting 2 signs together is big stuff! The only other time we've seen him do this was about a year ago and it was pretty hilarious. Rich was shirtless and picked him up. Ethan pointed to his nipple and signed "Dad Milk", a moment I'll never forget!

This morning I picked Ethan up and carried him into the bathroom for some mirror play. He spontaneously leaned in and kissed me on the cheek! He has never done that without being prodded, and even then he will often hold back the lovin'. (He actually did it twice in a row!)

*New surgery date is Tuesday the 18th!*

Quick update and some Ci cuties

2007-12-11T15:13:00.000-08:00

We had to cancel Ethan's surgery today because Rich and I are both too ill to take him to the hospital. Hopefully we can get it rescheduled soon as I was really looking forward to getting it done. I want Ethan to feel some relief, he's carrying around a lot of fluid and that can't be a great feeling. The little guy has been on an antibiotic since Oct. 30 (to prevent an infection) - and I think it's wreaking havoc on his system. Incidentally, I've held off on having those labs done since the meds can affect the test results.

On a happier note, take a peek at Buzz's site for a dose of serious cuteness. All of our Ci friends are absolutely adorable, but this picture just really cracks me up.

(Their caps are by Hannah Anderson, many parents of deaf/hoh kiddos love them for keepting the head gear in place. These have been embellished by their football fan moms and dads!)

Time for tubes.

2007-12-06T19:23:00.001-08:00

(The final picture of a small series of Ethan and his beloved Misha)

I know I’ve said it before, but we live in a pretty rural region that is very geographically isolated from the rest of the state and could be characterized as a place where natural beauty and generational poverty live in harmony. We are home to a small university, which is the main source of employment for the community and one of the reasons why such a variety of folks find themselves settling down in such a strange little remote area. It’s a very liberal town, we’re the only county in our entire state that voted in favor of gay marriage; a fact that makes me proud to call Athens home.

I love that living here allows me to bump into friends and acquaintances whenever I’m out and about running errands. This evening I saw a local audiologist at the grocery store and shared the news of Ethan’s progress with his cochlear implants. She is the one who had to deliver some difficult news to two brand new parents; she told us that Ethan was profoundly deaf. I feel a bond with her that is hard to describe, but I bet you can imagine if you think back to a time when you received emotional news. I'll always remember that day, what the weather was like, what I was wearing, even the position I sat in, and how I looked at the world a little differently from that moment forward. All I can say is that she was the perfect person for us at that time and place in our lives. I will always be grateful that it was Roxanne sitting in that warm dark room with us.

But living in a small town has many drawbacks, not the least of which is a very limited menu of educational options for a special needs child. And Ethan has pretty specialized needs. I worry.

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We found out today that we will no longer benefit from the financial support that our state has been providing for Ethan’s needs since infancy. They have paid for many (but not all) of the bills that our insurance has denied these past 2 years. I have no idea what that sum is at this point, but I know that is has helped afford me the opportunity to stay home with Ethan and be the person that participates in his many appointments. I am trying to suppress my anxiety over this news and trust that everything will work out, but it’s pretty terrifying if I’m going to be completely honest.

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Next week Ethan will go back to Children’s to have tubes placed in his little ears. He has had chronic fluid and has had to stay on antibiotics to prevent infection, so the time has come to take care of the problem. It’s no big deal, a common procedure, but a hassle nonetheless. I made sure today that our insurance would foot that bill and it will.

I need some help getting into the Christmas spirit; can you point me in the right direction? (I’m seriously considering baking gingerbread men tomorrow, maybe that will do it!)

He's a happy hearing boy!

2007-11-27T11:12:00.001-08:00

(peas in a pod, these two at the zoo.)

It has been one week since Ethan began hearing with his 2nd implant. He's doing really well and seems to be adjusting slowly but surely. He still protests each time we put it on, but it's very short-lived and he has not been removing it at all.

The new processor has very low settings right now, so we know that he isn't able to hear nearly as much with it as his first implant, but I'm already noticing him turning to sounds in the house that he would have previously ignored. I can see subtle changes in his attention and the fact that he is responding by turning his head to these sounds is a very good sign.

We've seen a lot of reflux in recent days. Ethan doesn't let it get to him too much, but he has several moments each day that have looked tentative and he has actually thrown up a few times as well. (I can't get the smell of vomit out of the rug, do you have any suggestions?) We haven't seen his reflux flare for this many days in a row since he has been on prevacid. I can't help but wonder if the new implant is somehow involved in the problem.

E-boy's balance looks much better today than it did one month ago. I can't tell you if that's just natural progression for him or if the new implant is at play here, but it's exciting to see these shifts. He now has the ability to run and is trying his best to learn how to jump. Aunt Audrey recently said to me "One day we didn't know if he would ever be able to walk, now we can't keep up with him!"

Ethan said his first consonant sound on Thanksgiving! His dad was the only one to hear it, but he said the letter C! Rich reports that he made the sound a few times, so we've been working on it all week in hopes of hearing it again. Whenever I tell one of his therapists about a new sound of Ethan's, I hear myself saying "who knows when we'll hear it again since he's so inconsistent." It's odd to me that these little pieces of progress don't stick in his memory, but that's a hallmark of verbal apraxia according to what I've been reading lately. How do you get it to stick?

So that's a wrap...I'm working on expanding the photos on this blog so stay tuned for more cuteness.

Activation Day: Redux

2007-11-21T17:41:00.000-08:00

(with Misha at the zoo)

Rich and I assumed that Ethan’s 2nd implant activation would likely be very similar to his first implant, that it would be anti-climactic and even a little uneventful. We decided that Rich would stay home and work and Misha would go with us to the appointment.

First our audiologist (Lisa) put the magnet and earpiece on Ethan’s new side. He tore it off immediately! I think we got him to settle down by breaking out the cookies as all the toys we presented were just emphatically hurled to the floor. Within a few minutes Lisa powered up the equipment.

Ethan had no response to activation last year. In fact, it was 4 long weeks before he seemed to notice any sounds in his environment. His brain had never heard or interpreted auditory information, so we waited patiently for the neural pathways to do their job.

This time he started crying upon stimulation. It was one of those heart-wrenching cries when they sort of hyperventilate and moan simultaneously. He cried real tears, something I’ve only seen a handful of times in his life. I have to say that it was really tough for me (and Misha) to remain calm and collected. I wanted to shout, “Stop right now!” “Turn it off, he’s in pain!”

But Lisa assured us (and I trust her completely) that she wasn’t doing anything that could be painful, he was probably just shocked and afraid. That processor has come off and been put back in place about 15 times since then and he has consistently had the same reaction. Fortunately it's short lived as long as we have a distraction in place. Elmo can take him from screams to smiles in just under 5 seconds. He’ll then go about business as usual until that magnet falls off and has to be put in place again. That’s a pretty clear indicator that his reaction is based on fear and confusion, or just plain irritation, rather than pain.

Lisa has said that older kids who go bilateral complain about their new “ear” in the beginning. There is a definite adjustment period and they have to be patient because the new ear will take months of mapping sessions and trainings to catch up with the first ear. This can’t be reasoned with a 2 year old however.

It’s going to be quite an adventure I think.

Activation Day!

2007-11-19T19:41:00.000-08:00

I've just finished packing our bags for the big day. Tomorrow Ethan will have his new cochlear implant activated! We plan to take him to the zoo afterwards since the weather should be gorgeous and the hospital gives out free passes to patients and their families.

This time last year I wrote a post about our trip to the zoo following an audiology appointment for the first implant. That day at the zoo was the first time that Rich and I saw Ethan react to sound, so it was pretty emotional for us. I can't believe that one year later Ethan has the gift of hearing with both ears, it's just amazing. We have so much to be thankful for!

Response to a reader...

2007-11-16T12:35:00.001-08:00

This post is aimed specifically at addressing some thoughts brought to my attention through a recent comment on this blog.
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“i notice the ommission of any contact with an ASL specialist or a Deaf individual - just wondering if u forgot to mention that or if this expertise is not considered a part of your warrior plan?”

(Referring to the sidebar)

The battle plan so to speak is a dynamic document, one that is always changing to reflect the barriers Ethan has overcome. ASL has been an integral part of the plan from day one. I don't mention it in the sidebar, for no particular reason other than we don't have any "experts" working with him in that area. Unless you count "Signing Time" dvd's, which are life-changing for some of the kids that I know.

We don’t have any contact on a regular basis with a specialist or a Deaf person. We used to have an ASL interpreter (who became our friend) visit our home once a week to teach us, but she has been traveling most of the past year and was just home briefly before leaving to travel more. We live in a very small and geographically isolated area and have to drive significant distances for nearly all of Ethan’s services. There simply aren’t deaf people here. We’ve only heard of one other deaf person and he is now a sophomore at NITD. His parents are hearing and we’ve yet to meet them – even though I hope to someday learn from them as they raised their son with sign.

Ethan signs quite a bit (his vocab is nearing 200 words now) and actually has an affinity for ASL. We absolutely encourage it and are inspired by it. Currently he’s fascinated with the alphabet and can sign several letters. He attends to signing much more than he attends to voice at this time. And he is guiding this ship believe me. We’re all for continuing to learn and use as much ASL as possible and would love to see him embrace deaf culture someday if given the chance. (We’ll likely have to move at some point down the road…) I’ve written about ASL a handful of times if you check the archives.

"i was amazed to see some of the special ed teachers actually cry at IEP meetings - they were worried about his future because he is different - i looked across the table at them - saw their CARE for my son but also saw that it was very PATERNALISTIC and wrapped in PITY - he doesnt need PITY - he just needs a fair shake at things"

Your son has teacher's that are so invested in him that they shed actual tears at a meeting? Do you know how rare that is? Praise be to God!

“i wish u all the best in your quest and i hope at some point u will feel it is less of a battle and more of a journey - i imagine it is very tiring and exhausting otherwise and u r in it for the long haul”

You are absolutely on the money with this observation. I think my terminology lately is just representative of what mode I’m in on the space/time contnuum of parenting a “special needs” child. As you know from your own experience, it's especially intense in the early stages while you are getting those labels identified. We’re not in love with the labels either, but they are the only way to guarantee services or funding. I’m realizing that it most certainly is a journey and that your presence of mind and mental attitude shapes the reality for not only you, but your child as well. I’m in “battle” mode at the moment because I’m facing another new label, and you know how defensive that makes a parent feel. It’s a process; there are stages and I'm moving through them.

“enjoy ur ethan - he is precious”
"peace"

This is good advice – and I totally do. Peace to you, too.

Battleplan - Phase I

2007-11-14T11:43:00.000-08:00

Today was my big day of making my case to Ethan’s local pediatrician and it couldn’t have gone more smoothly. I needed her signature on the test requisition forms for the labs I want to have done on Ethan, so I thought I might have to really make a case and do some convincing. I approached it like a business meeting and drew an outline for the points that I wanted to cover and the strategies to employ in case of resistance. She was more than open to my ideas, she was receptive and excited. I made copies for her of each test that I’d like to have done and she was eagerly reading them and thanked me for the copies. I showed her the book that I’ve been reading titled Healing the New Childhood Epidemics by Kenneth Bock, M.D., and she wrote the title and author down and said she’s very interested in learning more. I have the test kits and will send them to the lab hopefully next week, and then we’ll have to wait for 2 weeks to see what the results are. I really have no idea of what to expect from the results, but I imagine that we’ll learn something new about Ethan’s body and take the next steps towards healing.

We are using The Great Plains Laboratory, Inc. and so far I’ve been mighty impressed with their customer service. You can easily reach someone via the phone and leisurely ask your questions and get them answered. Many DAN! doctors work with this lab and they have an outstanding reputation.

Here are the 3 we’re starting with:

Organic Acid Test (not to be confused with The Electric Kool-Aid Acid Test) – This is the most comprehensive test of overall health that we could do, it’s a good starting point as it checks for vitamin and mineral deficiencies, neurotransmitter metabolites, yeast/fungal metabolites, and fatty acid abnormalities among many other things. And my favorite aspect of this test is that it just requires a morning urine sample. Easy!

Food and Inhalant Allergy Testing
This will be the most illuminating I suspect. When Ethan was in pre-op getting prepared for surgery, the nurse asked me if he had any food allergies. I replied that I thought he might have intolerance to milk and soy, but that I wasn’t sure if they were actual allergies. She asked me to describe his reactions to these foods and upon hearing my description replied, “oh honey, those are allergies”. This tests for 95 foods. Once we know the real picture, we’ll adjust his diet accordingly. I’ve been very interested in trying the gluten and casein free diet, but I think I’ll wait until we get these results to make those changes. We’ll have to go to the local hospital to get blood drawn for this one.

Metals Profiles
This is another simple test, as it requires only one strand of hair. I’m not overly concerned that Ethan might have elevated levels of metals in his body, but I have a feeling that we will be surprised by what we see. Many kids who are on the spectrum of developmental delays have impairment of the natural detoxifying process of sulfation. If that’s the case with Ethan, it’s imperative to find out and deal with the problem to avoid damaging neurological consequences.

So there it is, in a nutshell. I may be coming across as an anxiety ridden and worried mother, and maybe that’s partially true. But it’s important for me to find ways to treat Ethan’s symptoms in a holistic manner and get at the root causes of his behaviors and diagnosis. Too many of the people that have worked with him are specialists and it’s a little myopic for me to say the least. They are great at what they do, but I’m tired of treating symptoms with drugs like prevacid, which Ethan takes every day and has for 1.5 years. It’s time to get to the bottom of the root causes and treat them carefully and as naturally as possible. Then I think we’ll see some significant improvement.

Thank you Sandra for pointing me in the right direction.

Bring it on.

2007-11-09T21:47:00.000-08:00

(creepy, but sort of fitting picture isn't it?)

I’m just going to take the liberty of purging with one more downer post. Then I’ll stop complaining for a spell. Because after all, we've got so much to be thankful for! I never forget this beautiful fact.

Here’s the thing: Ethan is probably (I think definitely) apraxic. That is, he’s likely got a new diagnosis on the way of a developmental apraxia of speech. It’s a neurodevelopmental disorder that can be very serious. I’m in that mindset right now of facing a new foe, in full on warrior mode. I mentioned the possibility of apraxia awhile back and could barely deal with it then. Now I’m feeling resigned and ready for battle.

It’s extremely complex (for my pea brain) and I’ll share what I am learning more in future posts, especially as we have a true diagnosis and take steps to deal with it in therapy. I’m ready to request that Ethan’s local pediatrician sign off on some labs that I would like done so we can get a very clear picture of the biochemical state of Ethan’s gut, of his food allergies (such as milk, soy, gluten), possible malabsorption issues, vitamin and mineral deficiencies, etc. My research (from medical databases and experienced parents of apraxic children) shows a very strong correlation between apraxia and the health of the gut and intestines. So the hope is that fixing the gut will thereby fix the brain. I find it interesting that this is the same path that many parents and doctors of autistic children take to heal their children, and on paper Ethan shares many characteristics of autism.

Once the local pediatrician is on board with running these labs we will map our course. It’s nothing radical or experimental, just diet and supplement changes. We’ve already started the fish oil after many weeks of reading about brands and types of omegas. I’ve also found a new vitamin recommended by parents and DAN! (Defeat autism now) doctors that I ordered online this week.

One thing is for sure, we are prepared and ready to do battle and we’ve got one smart and strong-willed little boy fighting right along with us.

TGIF

2007-11-09T06:26:00.000-08:00

Rich has been working in Manhattan this week and returns late this evening. Thank God! My mom came up to stay for 2 days and we had so much fun. Then a very dear friend spent the day with Ethan and I while we drove 3 hours each way to sit in waiting rooms and doctors offices. That trip is always exhausting, but having a fun companion along makes a huge difference.

Mom got to witness the ineptitude that we deal with regularly living in a small town while trying to get Ethan’s needs met. It is getting beyond frustrating. The clinic where he attends weekly aural rehabilitation took him off the schedule for the remainder of the quarter, which ends Thanksgiving and doesn’t start again until January. I had told them we’d take the week of surgery off and see them the following week and that somehow translated into no therapy for the next 8 weeks. And this is a university. A place that should see Ethan’s case as an extraordinary opportunity, it is a teaching clinic after all. I have been uncharacteristically quiet about sharing my opinions about this place, but I’ve reached a new level of disbelief this week. It’s a rinky-dink dog and pony show over there masking itself as some sort of learning community. And do you think anyone took responsibility or apologized for the failure?

While we were at the hospital Wednesday I decided to have Ethan’s frames adjusted as they have been smashing his face and looking terribly uncomfortable. The technician took them into a back room and moments later came out and informed me in a very casual manner that they had broken. Oh well. It took several minutes of me asking questions to clarify what had just happened and what the next steps were. Just as it happened at the clinic the day before, I spent several minutes engaged in handholding people through doing their jobs. It’s surreal to be your child’s advocate while simultaneously being your own customer service rep. I had no choice but to buy a new pair for him since it takes our local shop 2-3 weeks to get the same frames delivered. He gave us a 50% discount, so I saved $100. There should be a sign on the door proclaiming “Frames adjusted at your own risk!”

I was reminded this week that I need to take care of myself once in awhile. I let all sorts of stress get to me and I tend to internalize. Maybe turning it into blog fodder will help a little, but I think some exercise and yoga are in order here.

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Edited to add:
I want to give props to the students at the university clinic where Ethan has attended therapy for the past year. The students have been so open minded and easy to work with. Ethan has also had a phenomenal supervisor of students in the past, but she is currently on maternity leave.

Phew!

2007-11-05T07:34:00.000-08:00

It has been almost one week since surgery and Ethan is doing so well. The site of the incision is still pretty tender, but that is the only thing bothering this guy and it's mainly just a problem at night. He has been tossing and turning throughout the nights trying to get comfortable. The surgeon wanted him to wear that blue bandage during the night, but Ethan won't keep it on for more than a few minutes at a time. I think the purpose is to pin his ear against his head to keep it from sticking out as they sometimes do after this surgery. His other ear sticks out just a tad, which suits his situation rather well since it holds the ear piece and his glasses.

He has been too sore behind the ear to wear his glasses. He hasn't worn them since the surgery and I'm hoping that it won't be a big battle getting him back into that routine. Speaking of his eyes, we found out that he won't need surgery for a few months. That was welcome news as he needs time to adjust to having another ear and all the mapping sessions that entails over the next few months.

We're also happy to see that Ethan's balance seems to be unaffected by this recent surgery. That was a concern our surgeon had all along since we have no research on the affect of bilateral implantation on small children with motor delays. He's very sure on his feet, even without the benefit of corrected vision.

I have been knee-deep in reading and thinking about diet and supplement changes for Ethan. We're about to make some big changes around here.

Have a good day everyone.

Success!

2007-10-31T09:14:00.001-07:00

Ethan now has 2 cochlear implants, the surgery was very successful! Here he is this morning, in the hopspital waiting to be discharged. They kept him overnight to keep him hydrated and to keep the pain under control. He came out of surgery at 3:30 p.m. and slept until 4 a.m., waking only a few brief times to sip some juice. What a champ we've got!

We'll be leaving here for home shortly, just wanted to update everyone and thank you all for thinking of us.