Tuesday, April 7, 2015

Our Autism Story

A friend of mine shared their "autism" story, so I thought I would share ours. Our oldest had a pretty normal birth but spent a week in ICU due to high billy ruben levels. (no playing the what if game.. but i hate that his eyes were covered for a whole week for long periods of time). CJ loved to be in the sling I used. I carried him around in that until I was too pregnant with Nola to carry him. He also loved to sit quietly and look a books. (I think he may have be hyperlexic) He was such a quiet well-behaved guy. I was a "baby wise" mom and he took right to the schedule (now I think he needed that and it probably helped alot.) i remember my friend Angie use to tell me all the time what a good baby I had. He smiled alot and really did like to get his picture taken. As we moved along, his development was "normal". As a toddler he had some issues with biting but I thought it was probably just "toddler behavior". We had the darnest time toilet training him and I was sure he would not be in Kindergarten (he was by 4 ish). He went to ABEKA PK4 and his teacher talked about how smart he was, but that he was always moving. He had a hard time sitting to do work and writing, but he was fine at home. Out in public he was always a little hyper but it didn't phase me. CJ was born in late July but we decided to put him in K the fall he was 5. That was a bad decision and by Oct we had to pull him out of school. He was upset and having behavior issues. I took him home, put him back in PT PK and let him grow and mature for a year. 

We tried a private school the next year in a K,1,2 multi age class. ANOTHER bad idea. the school insisted I put him on ADHD meds. That was a hard decision and one I still regret. He needs them now but he didn't then. It seemed like every week we were at the doctors either increasing or changing the meds. My little guy didn't act like himself, sometimes put his head in his backback and would trhash around. It was hard for me. So once again I pulled him out of school (actually the school requested it but told me Nola could stay!) 

The next year we went back to our public school. I met with them in the spring and was able to meet CJ's teacher for the next year, Tin. Jett was born late April and by the fall of CJ's second 1st grade year, I put Jett in half day daycare, so that I could get a PhD in CJ. 

I went to Sensory workshops, ADHD conferences, read countless books, worked with therapist (for me and him), got him in OT and PT. The year earlier I started to question if it was Asperger's but everyone told me "No Way", he made eye contact, he wants friends!! so we keep going down the ADHD road. That school year was a good turning point. I told Tin that I didn't care if he "learned" anything that year, I just wanted him to love school. I went up to school and brushed him 3 x's a day, and started all the therapies (except ABA, I didn't even know what that was). We met an amazing Nueropsych there Dr Audrey Don and she did one on one therapy with CJ. I still have her notes. I learned so much from her. 

We then moved to GA and CJ started 2nd grade. Another horrible year. My guy would all but fall out of the car everyday when arriving at school, he had what seemed to be no executive functioning skills. He lost everything and his teacher (although) sweet was not equipped to help him. I felt like I lived in the move Groundhogs day" b/c everyday we would have the same conversations on the way to school. Somedays I wanted to scream. No one would even consider a IEP b/c he was just too smart!! We had meeting after meeting. The school psych even told me that if I would concentrate on my other children and stop perseverating on CJ, he would be fine!! (Yes folks there was about 10 other people int he room including a state parent advocate I brought). But b/c I would not give up, he agreed to sent out the GADS (Gillian's Asperger's Diagnostic Scale). A probable score is 100. His teacher's scores were 125 and ours were around 120. So off we went to have more psych testing done. The results came back that he was on the spectrum. Funny but I am probably the only person that was relieved to hear it. I knew my guy was different but everyone had us going in different directions. 

Next I had to fight for a IEP, b/c he was "so smart". (Being smart does not mean you don't have deficiencies!!) within the first semester of his 3rd grade year, I once again pulled him so that he could go to a school closer to my where I worked. THANK GOODNESS. it was a good fit. but at the end of that school year we moved to TX. 

My TX story is too long to tell but the best part of all of the TX Randolph ISD drama was that CJ began getting ABA with a amazing BCBA. Ashley (and several others Anissa) helped us in so many ways. (and got me stated on a new career path). 

Over the years we have had amazing ST, OT , PT and BCBA's. I am so thankful for everyone that helped (including grandparents). He is now 17 and it is still hard but he has come so far and that is easy to forget when you are in the middle of it. It really does take many hands to make light work. Thank you to everyone that encourages and prays for us. Through it all we have been so richly blessed!!

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