Wednesday, December 5, 2007

First Transition Meeting

Last night we met with Liz, our FRC from the Birth-to-Three program, and the school psychologist from the Kittitas School District. Evan will be three in July, and we have to plan ahead for his transition from early intervention into the school system. What this means is that the school system will be providing his therapies, instead of our insurance and then Head-Start as the payor of last resort. Jeremy and I had been a little bit apprehensive about this transition because we were under the impression that Kittitas really didn't have the resources we think Evan needs to be successful in pre-school, and eventually regular school. There is a developmental preschool in nearby Ellensburg we have been wanting Evan to attend, but because we are out of district (we are less than a mile away from the district line) a big battle was anticipated.

The school psychologist made us feel a lot better about the transition. To begin with, she said there was pretty much no way that the Kittitas district would contract (meaning pay) Ellensburg school district to take Evan into their developmental preschool. But then she told us about the speech and occupational therapists that come to the school. We are quickly coming to the conclusion that ASL is going to be Evan's primary mode of communication, and that it will be important for him to have an aide that can sign (in our small community, this may be difficult to find). If there is a plus side to Evan's frequent need for venting the g-tube, we are hoping it will be for him to have a one-on-one aide (again, finding one that knows ASL may be a tall order--but it wouldn't be any easier in Ellensburg either).

The school psychologist pointed out that preschool in Kittitas will be through the Head-Start program, and Evan will be with typically developing peers instead of just "developmental" kids. Jeremy and I already know that Evan is a watcher--he tends to try things he sees other kids do (for example, I am almost positive the climbing came from months of watching Gabe, the climber extrodinaire!).

The most difficult moment came when the psychologist commented about Evan would obviously qualifiy for an IEP (and if you are reading this, know I have absolutely no bad feelings about that's just that sometimes the truth really hits hard). It's good he will so easily qualify because he needs an IEP to get services. But Obviously...are his differences that, well, obvious?

To me, Evan has come so far in the past two years--in the past two months even. I have learned the best yard-stick for Evan is Evan. But in not comparing him to typical kids, it's easy to in a sense deny the reality of how very far behind he is. Sure he has made some big gains, but "normal" kids are making even bigger gains, so the gap between is getting larger and larger. Max's mom Amy posted a couple weeks ago about being "jealous" of the developmental strides of the kids with Down's in Max's play-group. I completely get what she is saying (although, to us Max is leaps and bounds ahead of where Evan is communication-wise. Check out the video on Max's site of him signing parts of the "itsy-bitsy spider" song--it's too cute and we are so proud of both Max and Amy!). I guess it is all about perspective.

The beginning of May is when we will start the transition process in earnest, and Evan will start pre-school next fall.


Leslie, Arlin & Katie Kauffman said...

Good luck on all the transition stuff! It can make your head spin sometimes, especially given the number of services our kids need, but you are wise to plan so far ahead and have everything in place by the time Evan starts school next year.

You may be able to find a good aide who is willing to learn sign. Neither of the aides Katie has had knew ASL at first, but they were great matches for all the other areas she needed help with and were very willing to learn basic sign. I've been amazed at how much they've learned in such a short time. Her current aide is already starting to know more sign than we do!

I know what you mean about the obviousness of the IEP, but believe me, that IEP will become your greatest tool! Use it to get what Evan needs, and don't be afraid to ask for changes or more services if you think he needs them.

Good luck! Can't wait to read about Evan's adventures in school next year!

Eva Nichole said...

We are working on Eva's transition too she is starting in April. I can not believe it!! You are so far ahead of the game, we know the 3 schools we have to look at and there is one I am really pushing for.
I also know what you mean about Max, he is so ahead of the game and I am so proud of him but at the sametime it hurts that Eva is not there yet.
Keep up the great work,
Crystal and Eva

Anonymous said...

Dear Angels,
As Christmas is almost upon us, I think back how many times, Evan's life was touch and go. I think about the two angles opening their gift and realizing that there are many layers around the gift and that there is great joy and anticipation before actually finding the true gift. Sometimes the best part of the gift is just taking your time in the opening of it. Evan's gifts are in his own time, but they are more treasured because of who they are all about, our beautiful and talented grandson.
Grandma & Grandpa Key

Mighty Max! said...

Evan, you are one very blessed boy to have such loving grandparents. Their words just brought tears to my eyes. And they are exactly right...each layer shows us something new and extraordinary about you, precious you! We miss you Evan! (and Sarah and Jeremy!)

Love, Amy and Max

Catherine said...

What beautiful comments from your parents! I've bookmarked this post because it means a great deal to me now and for the future. I read Amy's post too about Max and in a sense, I look at your boys and think, I want my Reuben to grow and be a toddler too and at the same time, feel the pain for the future and developmental delays. I wonder what can be done in early intervention and then remind myself that we struggled for so many months in intensive care keeping Reuben alive, that perhaps we can never catch up. Does it get to a point that you find acceptance? 7 months into this journey, it still hits me with such great force on occasion and
I pretend there's another scenario and my boy is healthy. I'm so glad I have the journey to share with you all. I'm so glad to read of the transitioning and whilst my head spins, I can continue to learn so much from you. Thank you for all your kind words on your blog re Reuben. Cx