Updates

Tay: My heart goes out to everyone with a child who has differences and needs because the tangle of reading hundreds of articles, making dozens upon dozens of phone calls, searching for counselors, meeting with doctors and tracking down the best help all so you can get a diagnosis is exhausting! It's been 8 months and I feel like we've learned so many things and yet not been told hardly a thing.

The most relieving news came yesterday when an Autism Speacialist, Melanie Johnston, that I have been in touch with said she'd looked over all Aiden's files and information carefully and felt she could rule out true autism completely. He still will be tested for a full range of developmental disorders including Aspergers and Pervasive Developmental Disorder (PDD) by Texas Children's Hospital but they are experiencing a 4-6 month backlog. I've been calling to check the status of Aiden's paperwork frequently but the reality is he may not be evaluated until Christmas. That's a long wait for a diagnosis.

Meanwhile Melanie also had some news that the disappearance of Aiden's toy throwing & atypical behaviors when he has adequate tactile stimulation sounded very much like Sensory Integrative Disorder - also called Sensory Processing Disorder. I was stunned because not two weeks ago I had stumbled upon a message board of moms who were suffering from chronic toy-throwing boys and several said their sons had been diagnosed with this. (Luckily they also said almost every boy stopped throwing toys around age 4 or 5 on their own, seeming "miraculously cured" when kindergarten started and their hands were busy several hours per day.) I had read about this disorder on my own and was surprised at how much it sounded like Aiden. You can read about SI here.

Melanie gave me the name of an Occupational Therapist that specializes in diagnosing SI. I am waiting anxiously to hear back from her and something in my gut is telling me we are finally on the right track. Autism never "felt right" and he didn't really fit the Asperger's markers either. Something having to do with TACTILE and his intense need to use his sense of touch is the only thing that has made any sense and, when corrected through abundance of tactile stimulation, is the only thing that has altered his behavior. As of now you know all that we know but I thought the family might like an update. :) Melanie is also putting me in touch with a Behavioral Analyst that will do in-home consultations and help us tailor an early intervention & non-medicated therapy approach for Aiden to understand the way he interacts & interprets the world and have him class room ready by Kindergarten.

On a more fun note, this has definately had a BIG silver lining for me! I am getting to use my creativity at full-throttle and every Sunday night I now spend time making tactile learning toys & helps for Aiden. I've been using my digital drawing tablet to create my own sewing patterns, my Silhouette machine to cut them out of cardstock & my sewing machine to stitch whatever the current project is. I also ordered some unfinished wood cutout mushroom shapes that I painted to give Aiden a fun way to play with mushrooms and overcome his excessive focus on them. It worked - we don't hear much about mushrooms these days!

It has been so much effort, more stress than I can explain and I've had to completely re-arrange my life, drifting from all but my closest friends and cutting down the amount of "me", "us" and "house" things I do to devote hours every day to Aiden's needs. And yet I realize that I have been drug from the world of gossip and girlfriends with a legitimate reason to ignore all of those silly things and in the process of lavishing attention on my only child and JUST PLAYING, I have realized how shallow and unfulfilling the rest of the world is. I am getting a free pass to a better life - all wrapped up in having a "high involvement" child - and there's no denying it's a blessing in disguise. In these few short months I have made more memories than I can count and when I get it right - when I actually spend my time on the things that are truly important - I am happy beyond what I have ever previously known. I would have never realized any of this had Aiden been a "normal" child who was less demanding and let me waste my life on other unimportant things. :)