Sunday, April 27, 2014

Julianna, Part 5: The Learning Phase

When your child receives a diagnosis (or two) and you begin atteninding IEP meetings, suddenly you are thrust into an entirely new world. Julianna simply couldn't just be sent to any class, with any teacher, and do fine. No, there had to be meetings, long meetings, where you would sit around a table and discuss your child's strengths and weaknesses with a psychologist, OT, PT, speech therapist, the principal, a classroom teacher, and the one I feared the most: the special education director. I'll call her "Mrs. Fox" to preserve her identity and reputation in this and future posts.

The first few meetings, I was just getting used the idea of having all these facts thrown at me, many of which I did not understand. We would read over reports, evaluations, and then come up with personalized goals for her school plan. I loved that everyone was thougthful and honest, and patient with me when I would cry as I would hear just how low she was in every category, and how I felt lost most of the time. I cried at every meeting. They were generally very supportive. The first thing they told me to do was send in the current IEP and reports to the Regional Center so she could get services there. They assured me that she would qualify given her delays. And they would always turn the time over to me, and I would share some things that I thought she could work on, but really, they covered pretty much everything, I thought. They were taking the burden off my shoulders and helping me cope with the reality of my new situation.

But what I soon learned after entering this world is two things: 1. I had to learn more about all this IEP/special education stuff so I could sound knowledgable. And 2. I had a voice as her parent, the most important one. If I didn't agree with anything, it wouldn't happen. But if I wanted something in particular, that was another story. For example, the one goal that been on her IEP from the beginning was "being able to release on the toilet." The first year of preschool came and went, and Julianna grew in amazing ways. But that potty training goal remained unchanged. And then more shocking news...Julianna did not qualify for services from the Regional Center. The main reason: Julianna did not have a diagnosis of autism. It turns out that Regional Centers only allow certain kids in, kids who need more help than Julianna did. But I knew she needed it, and the entire team could not believe she was denied, and said we would continue to fight this.

And as she approached her 5th birthday, I began to get those little feelings again, those feelings that nag at your brain and don't let you move on in peace. Her behaviors of hand biting, tantruming, and head shaking persisted, despite the therapies at school. I began to wonder if she did have autism...after all, it might help her get that help from the Regional Center. So I called for an IEP meeting. That's right, I used my power as a parent, called a meeting, and requested that she be evaluated again, this time to see if she did in fact have autism. A month later, we met again to go over the results. And she received a new diagnosis: autism, in the moderate/severe range. And possibly Asperger's, meaning that they really thought she would improve to the point where she would only have Asperger's.

There it was, in black and white. Autism. The diagnosis I had been dreading since I first heard the word spoken to me by my neighbor, over 3 years ago. From my journal, October 12, 2008:

"They determined that you do in fact have autism, in the moderate range, and possibly Asperger's syndrome. I had thought you had autism for a while now, so I wasn't too surprised. But I hadn't suspected Asperger's. This new diagnosis means you will get more services that will help you improve and progress. This last year has been your hardest yet, so I hope it will only get better from here. Now this doesn't change anything about our love for you or how special we think you are! We know you can do anything you want in life! Autism means you will have more challenges to reach your full potential. But you'll get there! We'll never give up on you."

Now that Julianna had the official autism diagnosis, we once again sent in the paperwork to the Regional Center. For sure she would qualify this time, I was told. She desperately needed the resources that Regional Center could provide in the home, specifically, potty training help. Julianna's future progress in many areas was riding on this help. All we could do was wait and see what they would decide, a second time now. And if the Regional Center wouldn't help, I was sure that the school district would make up the difference, or so I thought. Enter Mrs. Fox...

Halloween 2008, during our waiting period

No comments:

Post a Comment