Sunday, April 06, 2008

Enough For One But Not Another

I've hesitated writing this entry because I haven't been sure how I feel about it. I'm conflicted. It can be so very difficult advocating for your child when you feel like the bricks are stacked against you, putting you on the outside of the wall. We have a few things going on with Grace, and while we're making strides in her advocacey, there are still some obstacles.

Who would have thought that she'd be "autistic enough" to need special services, but too high functioning to benefit from specialized occupational therapy in the local pediatric autism specialist clinic? Yup, you read the correctly.

Grace is currently getting two days worth per week of special services that include occupational therapy, speech therapy, social integration, and academic support. She gets these from the early learning center down the street, which also houses the entire town's kindergarteners in addition to the special needs preschoolers. Each day is about equal to a preschool day, which is really half a day. Right now, they're essentially prepping her for kindergarten, and I've been assured that she will continue getting special services in addition to attending kindergarten this Autumn. When she gets her social integration and academic support, she's in a classroom that has a couple of other special needs children, and several mainstreamed children as "models" for behavior.

I'm very proud to say that it's working. She's speaking more often, and more clearly. She's taking on a big sister role with Anneliese, as opposed to taking her lead from her little sister. She's making more frequent attempts at making eye contact with classmates and teachers in her regular preschool setting. She's making more frequent attempts at communicating using words with other children, moreso than with adults, but she's making strides with both.

Little steps, little steps. Improvement is improvement, right?

Well, the fact that she's making improvements and the fact that she has the capability to speak means that she's too high functioning to benefit from spending time in an independant clinic because the children at that clinic are far worse than she is. She would end up being a model for THEM, and would end up backsliding. However, I now have a brand-new support contact because the Doctor at that clinic has offered to allow me to e-mail and call him whenever I have questions or issues. Which is good, but she won't be a patient at this clinic, which he called "a school."

Now on Monday, I have to tell our child psychiatrist this, because she thinks that Grace needs the additional therapies, and wants to discharge Grace to a specialist like this because they can focus more time and resources that she doesn't have. She's good, but wants someone who is a pediatric autism specialist. I have a feeling she's going to disagree with the assessment.

For anyone reading this, who may have a severaly autistic child, I know you're probably thinking that I should count my blessings, and believe me. I am. I count my blessings every day that Grace is receptive to therapy, and that she has the ability to speak. I count my blessings that she's happy, and appears to be very intelligent. I count my blessings that we're having more good days lately, than bad days. I count my blessings that she WANTS to learn and looks forward to her therapies. I really do. That's not to say that she can't have horrific days, or that we have some major challenges in coping with her Aspergers. It's not easy, and I respect every single parent out there trying to cope, and coping successfully, with their Autie and Aspie.

Anyway, after speaking with the specialist, I called the early learning center and requested a new PPT meeting to officially request that Grace get additional services through them, even if it means cutting back on her number of days at the preschool. Her teachers are wonderful, but they're not specialists dedicated to focusing attention on Grace's special needs, and they have other students to focus on, by parents who are paying good money for preschooling, just like we are. Grace does take "extra" time for them, especially on her bad days, and while they're qualified to deal with issues and are working closely with the team at the early learning center, it's not their specialty.

This week should be interesting. My PPT meeting is this week. I also have a Girl Scouts Troop Leaders dinner this coming Thursday evening. That means I get to get out of the house without the kids! I also need to make a more concerted effort to get to the gym this week. One of my SIL's is getting married in September, which means I have to really work my butt off. Literally. I want to look fantastic for the wedding.

1 comment:

Inspiration Alley said...

My son has a diagnosis of Asperger's Syndrome and I know how frustrating it is to get the correct support. We live in England. There is virtually no support for anybody on the high functioning end of the spectrum. Ashleigh's Consultant and the Head of Inclusion and Access at the LEA both say that they have the greatest difficulty in meeting the needs of those considered to be high functioning. There is no appropriate educational provision, unless you want to send your child away to a specialist residential school, and then you'll fight for years to attain it, and the support in terms of therapies is zilch.

I an so relate to your post.