Tuesday, August 11

The Good, The Bad & The Ugly

It's amazing how a little phone conversation with Drew can bring a little bit of good back into my world. I'm traveling for work again this week, and had the opportunity to talk with the little guy on the phone earlier this evening. We chatted about his trip to the bowling ally today.

"No strike."

We chatted about his pizza lunch.

"Cheese on top!"

And I got to hear my most favorite words.

"Love you more!"

But things have been bad, and often downright ugly. And I'm struggling to just to get through day by day. This whole IEP process has not brought out the best in me. I am a "Type A" personality, probably to the strictest of its' definition. I'm not quite the OCD personality I used to be (who can be with two children?), but I like to have 100% control of my life at all times. I like to know not only what I am doing tomorrow, but next week and the week after that. I am very scheduled by nature, and I don't really enjoy change. I can handle change, but like change most when it comes with notice.

That's me. Take it or leave it. I've learned a lot about myself over the years to be able to recognize this. It can be a strength, and at times a weakness. But it is just who I am. I like to have control over things in my life. And while this type of personality attributes to many of the successes I have had both personally and professionally, this personality is just not working for me right now.

In this IEP-being-at-the-mercy-of-a-school-district process, I'm not good. It just isn't a process designed for people like me. A system where you lack control of when a meeting will be scheduled, or even where your child will attend school just days from now. For us "planners", this whole system is for the birds, and really wears on you mentally and physically. I've been having a lot of trouble sleeping at night. Going through this process, which is now coming up on five months, has been exhausting. I worry about every last detail. Did I articulate Drew's needs well enough? What research am I missing? Who haven't I contacted that might be of assistance?

Now that we have some dates on the calendar, I am doing better. Drew's evaluation will take place on the 13th. The meeting to determine his IEP eligibility is on the 19th. The IEP meeting is scheduled for September 2nd. But I still lack control. What will the evaluation say? What placement will we be offered? Will the school district place Drew in the program we have chosen? There are a lot of unanswered questions, and I'm just plain tired. I'm ready for Drew to start school. Drew is ready to start school. Drew's Sister is upset that Drew won't be attending school with her on the first day of the 2009-10 school year. (Isn't this great?: Drew's Sister is enrolled in the oral deaf education program we want Drew to attend, but our deaf child isn't enrolled in the program. Excellent.)

On the surface, it appears that Drew is doing OK. He speaks. Well enough for those around him to understand his needs most of the time. He understands much of what is said to him. But there are still major areas of concern. His listening is compromised at times. He will never hear as well as his hearing peers. He can't pronounce or even hear some of the phonemes of the English language. He deletes consonants from his words. His grammar is incorrect most of the time. He can't count, and doesn't seem to understand fully the concept of counting. He has developed a bit of a stutter, where he'll be searching for words in his head, yet can't get them to come out of his mouth. His list of needs continues. Our goal is for Drew to mainstream into our school district by Kindergarten. Without continued, appropriate services now, that just won't be possible. The typical vocabulary of a kindergartner is 10,000+ words. And that's just vocabulary, the tip of the iceberg when it comes to being able to perform at the level of his hearing peers.

I don't want to look back on this process one day and wish I would have done something different. And to date, I'm pretty proud of the decisions we have made for Drew. Cochlear implants were right. Bilateral implantation was clearly the right decision. An oral approach has worked very well for Drew and our family. The decision to change audiologists has worked well. The therapy we have chosen has been right. And now, we're in a situation where we lack the control, and a decision will be made that will significantly impact Drew's future. I just pray that the right placement is made, so that three years from now Drew walks through the hallways of our elementary school with his sister. And all of his peers. On the way to meet his kindergarten teacher in the mainstream.


Lucas'Mommy said...

Wow. I can feel your stress. I'm also a very Type A personality, and always want to be 100% in control. That's why I'm having trouble going back to work and leaving Lucas in the care of my MIL a few days a week.

I think you're doing an outstanding job, and just know that Drew will succeed. But, you're right that he needs those extra supports NOW so that he can be mainstreamed in Kindergarten! I believe that's what "early intervention" is all about!

How ironic that Drew's sis is at the oral deaf program where Drew is not yet enrolled. That would frustrate me too!

Hang in there!!! Thinking about you guys!

tammy said...

I just have to send you a huge hug. I'm quite the Type A as well and I can totally feel your frustrations. I can't believe what you all have had to go through trying to get your deaf son into the oral deaf program! It makes no sense. I continue to cheer you all on as you are some of the best advocates I've ever "met". You continue to provide many of us out here the importance of advocating for your child, lessons learned, and the strength not to give up. I truly admire you Jenny.