Monday, October 13, 2008

Accepting a new label.

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. 

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!


Cheryl said...

Melanie and I were just talking about labels last night. She, now 17, hates that she has had so many labels (Speech Impaired,Learning Disabled,Other Health Impaired,Emotionally Disturbed) and that is just the school end, I won't even go to the never ending medical end. I explained to her that you need the label to get the services. I hate that, always have, but the label is the "ticket" to get the services you need. I think as far as going into that meeting, you are in great shape. He deserves those services and I hope he gets them. What is frustrates me is he needed them BEFORE the label too. It all seems so crazy to me, why not just give a child what he needs. It shouldn't be so difficult, yet it comes down to the dollars.

So I babble, I'm glad you like the doctor and have a diagnosis that makes sense. I think the teacher hit it right when she said, "the sky is the limit," that just seems so Ethan. He is going to show everyone just how much he can do, which I think is almost anything. I'm not surprised about the letters and signing. His brain and those beautiful eyes seem to take in everything.

I admire you, you are such an amazing mother. Amazing. Like I've said before, you were born to be Ethan's mom.


Kyla said...

Ataxic CP! There is another kiddo who is a lot like K and E and she was diagnosed with this, too. I hate that kids need to fit into the Label Box before getting appropriate services. The LABEL changes nothing, really.

That is kind of how KayTar started reading and now she can read nearly anything.

Hetha said...

Cheryl - you're so good to me and I soak it in and am renewed for it so thank you!

Kyla - could this other child also have cmv? I've been thinking about Kaytar so much lately and should really just pick up the phone and give you a ring.

Aliki2006 said...

Sorry about the new label--I know what a mixed bag they can be. But if it helps, then so be it.

Congrats to Ethan on the language flood!

Mom to Toes said...

Heather, I don't know where to begin!

First, I feel for you having another label attached to Ethan. He is so much more than "labels." He's an amazing kid who can't be categorized, IMO.

Second, I am glad that you finally have another tool (see "label") to use with the school system to get him what he needs.

Third, Ethan is an incredibly intelligent little guy. I don't care if he *is* just memorizing letter combos to master his pre-reading skills. It is still reading! And I am in awe. :D

I am so glad you moved to Ctown. It sounds like you are finally getting answers to the questions you have been fighting to get heard for so long. He's in the right place, and so lucky to have the parents he has.


Karen Putz said...

You go on the reading!! That's pretty much how my kids started as well. I had sponge letters in the bath, wooden letters in a basket and the ever-famous Magnadoodle. You can have fun incorporating fingerspelling too.

If the labels serve a purpose and get what you need, great. All I see here is this incredibly cute kid and the dedicated parents behind him. :)

Here It Comes said...

First, what a smart one that Ethan is! That is amazing that he is recognizing words so young!

Second, Cheryl, thanks for sharing your daughter's perspective. As a parent of a young child we have yet to hit the point when she can express how she feels about what she has been dealt. I never even thought to be sensitive to the labels themselves. Mostly because the labels are what open the doors, and I haven't even gievn thought to the negative sides of the labels yet.

Third, I know it must be hard to hear Ethan labelled that way. I truely hope it does give him more opportunities such as therapy, though. That has been one positive to Emmi having such a rare disorder, the rarity alone scares them into giving us lots of allowances for therapies and such!

Loudest Mom said...

Wow- You've been really busy (as usual!) Sorry I haven't gotten back to you on our school district issues, etc. I'm hoping to catch up soon. That said, we've had more issues than ever w/ our battle-LOL. Figures- when it rains it pours....

Use the label for the good it provides (w/ the school district, etc), and then forget about it-LOL! Sounds like that's exactly what you are doing (and have been doing).

Julie said...


Others have said it well... and I throw in my sympathy too. Your attitude is inspiring. Ethan IS the same kid, and I hope the new label helps you get him what he needs. It doesn't really change anything else :0)

Your comment about Ethan remembering the shapes of words, rather than actually knowing how to spell them, rings familiar and true. I've been told that very thing at reading seminars.

When I was trying to teach Tate to spell the 10 or 20 "Kindergarten words", it helped to write them with all lower-case letters in one color, and then outline the word with another color... not TOO closely, but follow the shape of the word.

I'm all for Phonics, but it's pretty hard for Deaf/Hoh kids to learn to read with just phonics! That's a great tool to help them learn "sight words".

Seems like they also "read" fingerspelled words the same way -- really seeing the shape of the letters/words, rather than registering each individual letter.

Hope that makes sense.

Someday Ethan will realize everything you've done for him :0)


leahlefler said...

OMG- Ethan is so adorable in his fireman costume! My almost-3 year old is jealous!

Hopefully the new label will entitle him to stay at St. Rita's. It may just sway the school district into allowing him to stay in his LRE. He really needs to stay there with all the great developments over the past few months!

I am impressed with the sight reading ability! Very cool! You never know what kids are learning behind your back (g). All that reading definitely paid off.

Beck said...

Labels are stinky, but it's great that Ethan is able to get more of the services he needs now - and great that so much of it doesn't have to come out of pocket from you, either.
And geez, how cute is he? What a doll.

eda said...