Last Saturday was the 1 yr anniversary of the day Jordan was officially diagnosed with Autism. 10/4/13! It was pretty expected as I had suspected it since she was 4 but numerous professionals over that 4 years told me I was wrong, and attributed all of Jordans issues to mental health. While she does have ADHD & bipolar disorder, I knew that Autism explained much more than her excessive energy & mood swings. Nobody could explain her sensory seeking or avoidance in various areas, her extremely literal thinking, her obsession & special interests that dont pass over time like you see with NT kids, and so much more. With that said, I knew what an Autism Diagnosis would mean for her & wanted to make 100% sure we were right before adding anymore labels as they would say. The doctor Jordan was diagnosed by is a Neuro Psychologist who specializes in Autism. We sat on her waiting list for 6 months waiting to even be seen for the eval. Just as our luck would have it, literally the day before our appointment there was an issue with our insurance. It was beyond frustrating! But, I didnt come that far to give up so easily! I was on the phone with the insurance company, asking for supervisors explaining the importance of this eval & how much Jordan needed some answers. The doctor wanted approval of about 4 to 5 hours for the evaluation, insurance didnt want to go above 3. SO I went back & forth between the Doctors office & insurance and got her approved for 3 with the agreement we would be there early to get initial paperwork done & the Dr could spend the entire 3 hours with Jordan. OK! I said, and rescheduled her eval for a few weeks later. That honestly felt like the longest 3 weeks ever. But we got to that day, got to the office and the Dr was absolutely amazing! Initially Jordan & I were talking to her together (after paperwork was done) & Jordan was her hyper stimmy self (morning appointment & dr had wanted to wait on meds but bring them with so she can see her w/o them first). You name it, she was doing it, chewing on her shirt, spinning, talking 100 words a min & was all over the place. Dr had me give her her meds and her & I finished talking So they could do what they needed to do. I sat in waiting room for another 2 hours and when they came out Jordan was calm and happy. Understandably tired and ready to go home. Dr said she did well & we made an appointment to come back in a month for the results but she said from what she saw I should definitely be prepared for an official diagnosis when I come back. A month later, we go back & now I had begun preparing Jordan with the basics of what Autism is, what Aspergers is etc with books etc so she was pretty OK with hearing it as well. When it came down to it it though I honestly thought it wouldnt be a big deal for me as I knew. But.. hearing it.. hearing it is officially confirmed that your child is on the Autism Spectrum regardless of where on that spectrum they fall.. It still felt like someone had knocked the breath out of me. Just under 8 years old and we finally had some answers. Jordan had been seeing professionals since she was 18 months old and its not until she is 8 & only after I push n fight for this eval.. For those first few days I had a roller coaster of emotions to be perfectly honest. Still have some days where I fall into that dark place, especially days where I feel so damn angry at all the people that missed it, told me I was wrong, brushed off the red flags.. just UGH. But, at the end of the day she does now have the correct diagnosis, and over the last year a lot has been done in order to get services etc in place to help her. She is about to turn 10 years old next month with literally gives us 8 years left with these services to do as much as we can. After that point there is very little services wise :-/ But, theres a lot that can happen in 8 years & learning as well as progress doesnt stop just because a person turns 18 :). In the last year Jordan has come quite a long ways and has already made some incredible progress. Not everyday is taking steps forward, but not everyday is taking steps backwards either. Thats what makes this a journey, not a race. 1 year later finally we have more services in place, she is going to be starting ABA shortly which is intensive for 3 years and less intensive after that so it is going to interesting to see where the next few years take us, and take Jordan.
Posted on: Thu, 09 Oct 2014 20:56:57 +0000
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