Wednesday, July 30, 2008

Sunday, July 27, 2008

Breaking Through

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.

Thursday, July 24, 2008

On parenting a deaf child

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.

Tuesday, July 22, 2008

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, July 15, 2008

Tuesday Worries

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:

Monday Adventures

Friday, July 11, 2008

The Land of Options

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!

Thursday, July 03, 2008

Goodbye, Athens.

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....