May 11, 2010

A gift, just in the nick of time

Although life has thrown me a lot of curve balls in the last few years, I rarely allow myself to feel bad about it. Sometimes, though, I need to throw myself a pity party. Usually it's one of two things that will trigger it: either I'll feel sad about my husband being diagnosed with Young Onset Parkinson's Disease, or I'll feel sad about all of A's health issues. However, the pity parties are few and far between, and usually they don't last very long.

This past week, however, I've been in a bit of a funk. It started last week when our ENT told me that he wasn't sure if A's trach will be removed this summer. I've been holding out a lot of hope that it would be, and although there still is hope (we won't know anything until she goes in the OR this summer and is scoped) I left the visit with a sinking feeling. I desperately want it removed, and the thought of yet another year--or more---is really depressing. It just is.

Yesterday my funk deepened. A's speech therapist (well, the one she has at through the school district...she has another speech therapist paid for by our insurance) told me that the IEP team, which meets in a few weeks, is probably going to recommend a Special Day Class for A next year. They did this last year, too, and instead of placing her there, we put her in an amazing and very well respected inclusion program at a private preschool, where she has been thriving. To me, there is no reason to place in her a Special Day Class...her IQ is right where it should be (smack in the middle) and cognitively she is with it. Their concern is her language delay; in particular, that she doesn't answer "wh-" questions very well. She DOES have both a receptive and expressive language delay, which is caused by many factors. The thing is, while she does have issues answering some "wh-" questions, other ones she is getting down.

I feel that placing her in a class with kids who have cognitive abilities beneath her won't challenge her, whereas I've seen first-hand this year that placing her in a class with kids whose cognitive abilities are at her level or above challenges her...and trust me, this girl is motivated and rises to meet any challenge. The speech therapist's only reasoning for their recommendation is that at a Special Day Class there would be more speech-related activity. However, I am confident that the school she is at, which again, fosters inclusion and strives to meet the needs of everyone, including "special needs", is enough. Plus, she is getting 2 1/2 hours a week of speech therapy, which I am trying to raise to 3 hours a week.

But I digress.

The point is, this week I've been wallowing. I was even talking to one of my closest friends this afternoon and started crying about it. Luckily my friend was able to point out all A's progress, and how amazing she is.

Then, tonight, when we returned from being out, we pulled in the garage and A said "we are home". Usually she would say "we home"....but she said "we ARE home." And when I was getting the kids ready for bed, D was in his room and A and I were in her room next door. And A said, "Where's D? I want to see him". HIM!!!!! I have NEVER heard her use a personal pronoun like that. Sometimes she says "I", but I've never heard her say "him", "her", "she" or "he".

These were gifts. A reminder to me that, like I always say, a delay is just that: a delay. It doesn't (necessarily) mean never. This child will get there yet. I know it in my heart. I just don't always know it in my head.


  1. Those sound like wonderful gifts to me!

    About the school, just stay firm in your choice and they will have to do what you wish. It may be hard, but you can do it!!

  2. She knew her momma needed some encouragement! You have a very special girl, but you already knew that.

  3. She will never cease to amaze. There is faerie magic in her for sure.

  4. You 2 are amazing people and again such an inspiration to me. It's ok to "wallow" as you put's natural to go there now and then. I do...from one mom with "special needs" to another mom with "special needs". Love you!

  5. Correction...I meant to say from one mom with a child that as special needs to another mom with a child that has special needs.


I love to read your comments!