The Haircut

Here is a picture of Evan's haircut the next day (better late than never, right???).


After being put off for several evenings, Jeremy and I collaborated on Evan's haircut tonight. We waited for Evan to fall asleep in his bed, and we brought him back out to the living room floor and laid him on his side to begin work (we have yet to try an at home haircut while Evan's awake--scissors and Evan's flailing around just seem like a bad combination). I started by trimming all his curls to a finger-thickness, first on one side and then flipping him over to complete the other. Jeremy followed with the clippers and cleaned up the back and the sides. We finished by vacuuming up the hair around and on Evan--he stayed asleep the entire time. If there is a perk to Evan's deafness, this has to be it.

IEP News

We met with Evan's team last Monday. We don't have the final version of his IEP, we do know he will continue to have Sharie as his one-on-one aide all next year and the schoold district is paying for her to take a college-level ASL class at Central over the summer. There are a few other requests we had, that we are still waiting to hear back from the school district on.

Chalk

I was weeding in the flower bed while Evan played on front porch. He found the box of sidewalk chalk. At first he was just picking up the pieces and dropping them (we have lots more pieces of chalk now, thanks to little mister). But he managed to sneak a bite or two also. We need to work more on what the purpose of chalk is! If you look closely at the first picture, you can see Evan has chalk all over his face.

We are still alive!

My life has been crazy busy as of late...unfortunately, tending Evan's blog has fallen to the wayside. Here is an update of recent happenings, encyclopedia style.

ASL Class. The ASL class Jeremy and I have been taking since March ends tomorrow night. Unlike previous classes, our teacher is Deaf, and this gave us more insight on Deaf culture. We also learned more about ASL word order, which is what I have found the biggest barrier to becoming a proficient signer. The last class is a fun night, with games. We're bringing Evan with us to meet the class (Grandma and Grandpa Key usually watch him for us).

Baths. Evan still freaks out if you look like you're even thinking about putting him in by himself. But as long as he's in there with one of us, he does enjoy splashing around.

Cochlear Implant. Still haven't made any decisions here. I think we will most likely end up waiting another year, to give Evan some more time to outgrow frequent ear infections. This past winter he did really well. Another major factor is unfortunately our insurance--I have a suspicion the insurance company will cry "exclusion" and will not cover any of the cost of a CI. We do have financial assistance at Children's, but with all the budget cuts I don't feel good about asking for a non-life-threatening procedure out of the uncompensated care fund (a CI is around $40 K).

Doors. Still hasn't quite figured out turning a doorknob, but can push or pull open a door that's not latched (or locked) easily. No longer the barriers they used to be.

Getting Dressed. Evan has definite preferences about clothes and shoes now. He prefers red or orange shirts (sometimes to the point that you can't get a shirt of a different color on him). Blue jeans are the pants of choice, even if it's hot enough for shorts. If he happens to find a pair of jeans somewhere--a pile of clean laundry on the bed, or dirty ones from yesterday--he'll bring them to you to put on him. Sometimes, he even takes off his shorts first. I'm still not used to seeing him barreling down the hall with a pair of pants in hand. He also is very picky about shoes. He has a pair of brown ones he will wear--try to put any other pair on and it's fit time...

Insurance. Grrrrr...I shouldn't even start on this one, because I'm so angry about it. Our insurance company suddenly decided this year that Evan's therapy visits are not a covered benefit. Their reasoning is that Evan requires therapy because of a neurodevelopmental problem, and it's not "rehabilitative." That's right--someone can have a stroke because they won't control their blood pressure or they smoked for 30 years and speech or physical therapy for them is considered reabilitative; the insurance company will pay for 20 visits a year. But because Evan was born with delays that are classified as being neurodevelopmental, this falls under an exclusion in the policy. Never mind the insurance company has known about his diagnosis all along, and never mind they paid for his 20 therapy visits for the previous three years. I was informed I have the right to appeal this decision, which I plan to. Because I have all this spare time right now that I'd love to fill with writing letters to insurance companies. I understand things are tight and they are trying to save money, but we have a contract...they need to hold up their end of it.

Language. Kat, Evan's Teacher of the Deaf evaluated him last month. Evan's delays are significant, and the upside is that documenting them will help us get the services he needs on his IEP. But it's really hard to read on paper that your 3 1/2 year old has the expressive language level of a 10 month old baby and the receptive level of a 7 month old. What is even harder to read is that's a regression since the time he was tested a year ago. It's possible he had a really good day the first time he was tested, or a lousy day this time...but still.

Messes. Evan is very proficient at creating these now! New goal: cleaning them up.

Preschool. Evan has 2 more weeks, and then out for the summer. He has made some amazing progress this year. He hangs up his back pack in his cubby! Evan's aid, Sherry, absolutely loves him and is busy learning ASL. We are very fortunate that there's never been a shortage of good aids for Evan. Sherry is interested in working with him long term, and Evan really works hard for her.

Quick. I really don't know when this happened. It seemed like forever Evan was crawling and we were wishing for the day he would start walking. Now he runs--fast. If I turn my back for a second, he's off.

Swings. As I type, Jeremy is working on Evan's swing set in the back yard. We drove to Kirkland yesterday in search of a slide--we did find one. Unfortunately, Evan doesn't really seem to like slides right now. We tried to put him down a couple times, and he put the brakes on and in general did not seem so happy about going down. So we got him a tire swing instead--hopefully he will enjoy this one as much as the one at preschool. So far he is less than thrilled with his swing being in the back yard now. This boy does not like change (or grass...).

Twirling. This is so darn cute, but I can't catch it on video (every time he see the camera, Evan stops what he's doing to grab it from me). When he gets excited, Evan loves to dance around in circles--usually while looking up at the ceiling. I'm amazed he doesn't fall. He never seems to get dizzy!

Water. We broke out the Elmo sprinkler last weekend, and Evan had fun in the mist. Looking forward to some trips to the city pool, and if all goes well, to the water park in Moses Lake.

Daddy Resemblance.

People always comment about how much Evan looks like me (and my side of the family). But look at these expressions side by side--those mouths look pretty similar :) I think Jeremy was about 2 in this picture. Evan's picture was taken last week at preschool.

March for Babies 2009

Evan's CHARGErs participated in March of Dimes March for Babies for a forth time this year. Unlike the previous two years, it was pretty cold and windy so we took the short course this time--2.5 mile round trip instead of 5. Evan walked part of the way--usually holding on to a hand or two.

Walkers on the team this year were Evan (naturally), Jeremy, me, Grandma and Grandpa Key, Gary and Rosie Nelson, Angela, Connor, and Casey Peters, and several teachers from Valley View Elementary in Toppenish.

Last year, our friend with CHARGE Burke and his mom Chris walked with us also. They were not able to be here this year because Burke just became a big brother to twin boys, Levi and Judah. The twins were born March 14th at 33 weeks gestation. Both boys came home from the hospital a little over 1 week ago, and we walked in honor of Levi and Judah. Grandma and Grandpa Nelson walked last year and came out to walk today.

At the walk, we met another family from Ellensburg who frequently visits Seattle Children's--it's interesting how I found them. A couple of years ago, I made some fleece blankets and donated them to the hospital. Evan had received numerous blankets made by volunteers during his stay, and I wanted to return the favor. This family had one of the blankets I made--I recognized the fabric and asked them about it :) What a small world.

Here are some pictures from the day--Enjoy!


Gary and Rosie (Grandma and Grandpa to Burke and the twins) Nelson


The Peters family on the left (Connor and Casey are under the blanket--it was really cold!). Evan walking between Rosie and daddy.


The Yakima River is behind us...




Left to Right: Grandma and Grandpa Key, Rosie, Gary, Evan, daddy. This was the home stretch (and no, Evan didn't walk the whole way--he had lots of rest breaks in his stroller).




Evan's CHARGErs 2009 Team Photo


Teachers (and their families) from Valley View Elementary in Toppenish (they work with my mom)--there were so many people at the walk, we didn't see them until the end!


This is my new favorite Evan picture. He was playing on the support posts of a picnic shelter, having a great time. Look at that grin!

Deaf with a little "d"

I did not realize the difference between "deaf" and "Deaf" until I had a child with hearing loss. With a little "d," the word just describes not being able to hear. Using the big "D," implies involvement in the Deaf community. Almost every book on ASL includes some background information about Deaf culture. Because Evan has profound hearing loss and because we are trying to teach him ASL, I assumed that he would become part of the Deaf community. In the ASL class Jeremy and I are taking, out textbook talks about Deaf culture in greater detail than what I've read before. The more I learn, the more I realize...it's complicated.

There are three requirements for being part of the Deaf community--1) a person must be deaf, 2) he or she must use ASL, and 3) the shared experiences that come from beign deaf. It makes sense that the Deaf community would be defined in this way--these shared experiences and challenges form a common bond that unites deaf individuals across racial, ethnic, or social divisions. A hearing person might be fluent in ASL, they might even have family members who are Deaf, but they will never be a part of the Deaf community because they are missing the first-hand experience of what it's like to have a severe or profound hearing loss. Another person might have a significant hearing impairment, but if they do not know ASL they will not be able to communicate with members of the Deaf community.

As I read the chapter, I started to get a sinking feeling. For months, I have referred to my son as being Deaf. But profound hearing loss does not equal Deaf. It's not that simple. Evan does not know ASL now, and realistically he may not ever have a good grasp on the language. This "minor" detail would be a deal-breaker in terms of being Deaf, of being part of the Deaf community. Evan is deaf with a little "d." I am disappointed because it's one more place where Evan does not really fit.