The wheels keep turning.

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

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!

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

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

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

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.

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

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.

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

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)

The Right Track

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.