Tuesday, July 23, 2013

Understanding, Acceptance, and LOVE

I haven't updated in a LONG time. This Summer has kept us busy - specifically me - with the therapy appointments, family nights, full-time job of keeping the house in working order, and doctors appointments... All of the things that go with being a stay at home mom / special needs mom.

In December 2012 Logan was diagnosed with Asperger's. You can read about it here. Last school year was a complete headache. Phone calls from the teacher every single night, visits to the principal (who we could write an entire book on), it was nearly impossible to get the services he needed, but we prodded on and we got the IEP. We were super excited, only to learn his IEP was pretty much a skeleton. It had zero accommodation's, mainly behavioral, but nothing to *help* him. They shot down our diagnosis and said he didn't qualify for services pertaining to his Asperger's because the testing that they had done didn't show that he "educationally" qualified under that dx.

Over this Summer we decided to have the formal ADOS testing - this is a specific testing for Autism. It was a 4 hour long battery of tests for Logan while being observed by a clinical psychiatrist specifically trained in autism. We also had to fill out questionnaires. The tests included an IQ test, evaluating speech, reading, writing, fine motor, gross motor, monitoring mannerisms associated with autism, computer testing, etc. It was in depth. It is the "gold standard" for diagnosing. They will NOT give you a diagnosis of autism unless all evidence gathered through this testing is conclusive. To be honest after leaving the day of testing I wasn't sure that he would receive the diagnosis. I knew it in my heart, but that day he was having a "perfect" day...and a small part of me thought maybe, just maybe, they would tell me that the initial diagnosis was wrong...that he was just a neurotypical child and I was crazy.

Yesterday, we were given the clinical 100% sure diagnosis of Autism. After meeting with the neuro psychiatrist we were informed of so many things we had never known. We learned his IQ. We learned that the testing the school had done was extremely elevated - that in the speech eval, OT eval, and his kindergarten teachers evals that he was in the "handicapped range." The neuro kept saying - "I just don't understand why they didn't diagnose him." "It seems like they had an agenda." "All numbers gathered and evaluations done pointed to autism at that time." He went over everything and confirmed what we had suspected and had been given a diagnosis of a year and a half ago. Now with all testing, done it became clinically concrete.

Logan will now qualify for a yearly grant to cover ABA therapy - which our private insurance doesn't cover. We will have this evidence to take to school to show them we followed through with what they recommended and got a second opinion - from a doctor that they respect - and hopefully this will change the way some things are handled.

Of course, I have already gone through the "grieving" process of accepting that I have a child with special needs, but it still is hard to take it in. It is once again confirmed. It just makes me want to be the best advocate I can possibly be for Logan. I never want to fail him. I will do everything humanly possible to make sure his education is top notch and he is treated fairly. I will be his voice. My job is to help them get to know Logan as I know Logan. The Logan they "knew" was a child that disrupted class, got out of his seat without permission, couldn't keep his hands to himself, upset the teacher, upset other kids, and had temper tantrums. The child that they were constantly telling to "go sit," "stop interrupting," and "I already gave you the instruction's." I am going to be the mom that provides them with the education and understanding - I will explain through my words, with books, and articles what sensory seeking, over stimulation, meltdowns, and distractions really are. I want them to be fully aware of what a child with autism goes through and how their brains work. Maybe, just maybe, if they take it to heart and really listen...they will fall in love. That is my hope. That is my goal: Understanding, Acceptance, and LOVE.


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