Last June, after years of questions about him just having ADHD, and doctors putting him on an insane laundry list of meds, and fighting for the proper testing, we found out that he had PDD-NOS, which is a form of high functioning autism. The doctor who performed the testing went for that diagnosis, even though he felt that there was probably enough to classify Darby as having Aspergers, also on the Autism Spectrum.
Having that diagnosis, at first my husband and I felt guilty, that perhaps it was something that we had done, or not done. But we researched and read book upon book, upon book, and found that it was most likely a genetic issue. Now we do not see it as a disability, but rather a gift, because he is so unique and smart, loving and happy (in general).
The biggest issue that we have had is with the public school system. It is very frustrating to deal with, every damn day!
When Darby was in kindergarden, he was diagnosed with ADHD and we were told by CP Smith Elementary (Burlington, VT) that there was no way they would take him without him being medicated. As fairly young parents (I was 25 at the time, my husband 33), we agreed and he was put on the first of many meds. But that year went horribly wrong, and they ended up saying they didn't want to deal with him, and he was tutored for two hours a day at a middle school down the street. We were so fed up with the school that we sold our mobile home that we had (we bought it for cheap housing and maybe equity...) and moved into a crappy apartment in Winooski, despite hearing that the schools there were bad.
We were very pleased with the schools there, though. Darby was placed in an inclusive classroom with 5 other kids that were similar to him, and he bonded with all but maybe one of them. He tested way ahead on math and several other subjects, and while he was behind on his reading, he was catching up very quickly. We stayed in Winooski for two years, but our apartment was in a not-so-good neighborhood, with some not very nice neighbors. So we looked all over for another place in Winooski, with no luck, and ended up moving back to Burlington, this time in the Old North End.
We discovered that the neighborhood that we lived in sent the elementary students to Lawrence Barnes School a few blocks away, and having known students who went there, we promptly filed a waiver to have him placed into a different school. However, our waiver was denied because the "other schools couldn't accept another student on an IEP" and we were stuck with Barnes.
Darby's third grade year wasn't a total waste. He had a great teacher who has a child with Autism, so she seemed to understand more of his needs. However, he had 3 different aides that year. The first one was only there until October. The second one he hated with a passion, and despite our requests that he work with another aide, it wasn't until March when she decided to go work on a farm full time that we finally got the last one for that year, who had been a student teacher in his class, and he took a liking to her. His only complaint was that she was a little too laid back...ha ha!
We finally got the report back that diagnosed him with Autism in June, and because he had been having a hard time socially, we decided that maybe if we sent him to summer school, he might make friends. While the friend factor didn't really work out as planned, he learned about US States and capitals, and useful things that is supposed to be taught at school. And as much as he complained that summer school cut into his family and beach time, he liked what they were teaching.
Before the school year started, we called a meeting with the school and Darby's new teacher to let them know what to expect from him. However, when we walked in, the new principal, the special ed teacher and several other staff were there. We felt trapped and they proceeded to ignore everything that we had told them. The principal actually mocked me saying that I was the "supposed expert" on PDD-NOS...I knew right then that the year was going to be rough.
The first aide that Darby had was verbally abusive and unprofessional with him. We fought and had to threaten legal action before they agreed to give him a new aide in October. The new aide is the one that he has now, and we like her well enough, except that along with the rest of the staff, they completely ignore what my husband has to say. We have fought over so many issues that we had told them about at the start of the school year and it's at the point where they want to put him on a shorter day...I told them that there was no way in hell Darby was coming back to that school in the fall, so they have pretty much given up on him.
So this is my blog, about the daily struggles and joys that we have as being parents to a great kid with PDD-NOS and ADHD, and about our lives in general. I feel very blessed that we are such a close family, my husband Shawn, Darby and I, where we can overcome anything that comes our way. Because in the end, it isn't how much money you have, but how much love there is. I hope that you can all enjoy my blog, and find a place for love and closeness like we have.
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