So, back to our story…
Just to review, it was the summer of 2009, we had a soon-to-be first grader who was not responding as we’d hoped to her ADHD medication, a 3 year old who was becoming the cop of the family (everything must be exactly, evenly fair, and he counts EVERYTHING in his head, so don’t try to trick him!), and an almost 2 year old who never slept. Everything in our lives was fast-paced, high-energy, full of drama, and we were very, VERY tired. Something was definitely going on here.
About this time, my mom gave me a book to read that she thought described Squirt. It was called The Out of Sync Child, by Carol Stock Kranowitz. The first paragraph described children who seemed to be average, everyday kids, but were always on the outside of the circle. These were kids who were intelligent, friendly, and seemed “normal”, but then refused to participate in group activities. This jumped off the page to me as one of my biggest frustrations with Squirt. As anyone who knows her will say, this child is the exact opposite of shy. She will talk your ear off, loves to hug and cuddle, and is a goofy, fun-loving kid. But every time she was asked to participate in a group activity, she froze. Like the end-of-her-dance-class-career recital, where she stood on the stage and refused to dance because the 2 girls next to her ended up on the wrong spots. Or the Jr. Firefighter “class” that she waited weeks for, only to plant her feet and refuse to join the other kids in the hands-on part of the fun. Or the preschool graduation where she wouldn’t sing and do motions with the rest of her class. This baffled me almost daily! I couldn’t imagine how any small child wouldn’t want to join in fun games and singing! Isn’t that what all “normal” kids did?? But this author was saying there was a reason for that, and I was intrigued. I read the entire book in 1 night, and decided that this was definitely describing my child! And maybe my youngest, as well, just in a different way. And our journey into the world of Sensory Processing Disorder began.
We made a decision at this time to homeschool Squirt for first grade. There were many reasons, but the main one was that we were going to try and get a better diagnosis and therapy program, and it was just easier to deal with all of this if she wasn’t in school all day. After discussing what I was finding with the pediatrician, she agreed that there seemed to be more going on than the ADHD, and recommended an evaluation by an occupational therapist. For Booga, we were able to go through Indiana’s First Steps program, but for Squirt we needed to find a OT location that would test her. This took about 6 months on a waiting list and many, many, many phone calls, but we did finally get in.
Booga’s evaluation took place at home, where the therapists showed up, and within 5 minutes said “no way, this child can’t have SPD.” They did agree to stay the hour, though, and finish the evaluation. At the end of the hour, they had a completely different answer. “Yes, he has many sensory issues, but he is too ‘developed’ and ‘intelligent’ to receive services.” Great, thanks. My child has a problem, but you can’t help me with it. That’s exactly what I wanted to hear. They were appalled at his lack of sleep, but seemed to think that a simple change in our routine would fix it. They noticed that he had no idea how to be gentle, but acted like we could just teach him that. Needless to say, I was less than impressed and more frustrated than ever. I continued to read and research on the internet on my own to find answers for him, but it was a long road.
Squirt did finally get in to a center to be evaluated. Her results were much different; obvious SPD, sensory-sensitive type, lacking in several areas, and starting therapy once a week immediately. Her areas of concern were sensitivities to light, sound and touch, balance, core strength, and handwriting (no surprise there!) She started therapy right away, enjoyed it a lot, and seemed to be improving, slowly but surely.
During her testing, I mentioned to the therapist that Booga had been evaluated and that they couldn’t do anything for us, and she told me to let them evaluate him and see if they could qualify him. So back we went (he was 28 months by then) and he was given the same test as his sister. By the time the therapist got to the 48 month developmental guidelines, she looked at me and said “I have to stop now.” Same results; yes, obvious SPD, sensory-seeking type, several things that jump out at us, but he is just too “developed”. Fortunately, they were at least willing to set up a home program for him and teach us how to do his therapy at home.
We did consider at this point having Boyo tested as well, but he really seemed to be dealing with any sensitivities he might have on his own, so we did not. So far, that seems to be the right answer, although the further I get into this world, the more I realize that he is also sensitive, and probably would also be considered SPD, he is better able to adjust on his own.
Next week I will get into exactly what SPD means, and how we are learning to understand our children, and our world, in a whole new way!