Back to Galileo's Challenges

It was while he was a student in the 2 1/2 year old room that I finally started to figure out what the problem was. Someone posted "is my child just a brat" on the Parenting After Infertility board that I frequented at INCIID. In many ways this mom could have been describing Galileo, and yet I knew he wasn't a "brat". She got many responses. Several of them suggested she investigate SID or Sensory Integration Disorder which is more recently being referred to as Sensory Processing Disorder. OMG they were describing my child! I ran out to get the book The Out of Sync Child by Carol Stock Kranowitz. So much of what I read made so much sense, not just for Galileo, but for me, my brother, and others in our family.

Unfortunately, but this time, Galileo was 3 and it was too late to have him evaluated by Early Intervention, so I called the school district. We went to the meeting that would decide if they would even evaluate him for special services through the district. He did great in the meeting showing how smart he is and how articulate. But, they also did see his issues. He especially showed his colors to the social worker with a major tantrum as we were leaving. I learned later that this difficulty with transitions is typical of a child with SPD. The OT also observed him in his nursery school. She found some significant issues that I didn't even realize were there. For example, he had such a hard time riding a tricycle due to his vestibular issues.

VESTIBULAR: the sense of movement; input from the inner ear about equillibrium, gravitational changes, movement experiences and position in space.

I hadn't even considered him having vestibular challenges since he had always been such a good climber. She also felt some of his interactions with other kids were affected by Proprieoceptive Problems

PROPRIOCEPTION: the sense of "positon"; input from the muscles and joints about body position, weight, pressure, stretch, movement and changes in position.

It all made so much sense. It was also very validating to hear. I was not a bad mother and Galileo was not a brat!

Unfortunately, he also did not qualify for services through the district. The OT felt his preschool placement was good for him, but did suggest we get private OT. As we were going through the district process, we also had evaluations by a pediatric neurologist recommended by our pediatrician and by a private OT (occupational therapy). The neurologist was really obnoxious. Didn't think any stay at home mom had any business knowing about SID and thought Galileo was defiant and on the verge of ADD. The way she described him was as a future psychopath. I was livid! Her manner with her was awful and all the things she was using to base her "diagnosis" on were related to his SID (not wanting to use her bathroom, not transitioning away from the toy he was enjoying etc.).

The private OT on the other hand did feel she could help him and I agreed. Of course a former friend pointed out that OT's have a bias to see sensory stuff, but my gut was telling me it was real and should be treated. We had to pay out of pocket and get only a portion reimbursed by insurance since the OT group was out of network. It made money very tight for awhile with the 2 and 3x/ week sessions, but I felt it was important enough to make it happen.

Sometimes I wondered if it was all hocus pocus and if it was really helping, but eventually, we began to see a difference. We could go into costco without him cringing in pain at the sound of the air conditioners, we had the occassional birthday party without tears, he started to participate in music class at school. We continued the private OT for over a year and met with a psychologist who specializes in Sensory Integration issues. Both really helped. We also helped Galileo learn how coping skills for when he was overwhelmed and stopped having power struggles over things like clothing. To this day, my motto is "if he is comfortable, I dont' care what he looks like. Peer pressure will start influencing him soon enough". He does know that there are few rare special occasions like family portraits or weddings when he will have to wear what is expected of him, but we work with him to make those outfits as comfortable as possible.

Oh wow, this has gotten way to long and I fear very boring. it is bath time now. I will continue and hopefully finish tomorrow. I may post date a few posts for continuity.