Hi - I am the mother to a wonderfully unique 3 1/2 year old boy. We had always noticed certain "quirks" about our son, but we believed them to be either behavioral or the effects of his birth mother's meth addiction. I did not even think about testing or getting help until I noticed that he could not seem to remember how to grab and hold a crayon from one day to the next. He never used a "helping hand" and even when I would put the helping hand into position for him, it would only be seconds before it was back up in the air. He would not push on the crayon and then would have a tantrum because it didn't "work." I took him to the school district to have him tested this past Feb. Not only did they confirm many of the fine motor issues I had been concerned about, but they began asking many "behavioral" type of issues. It was like they were revealing my child layer by layer. At the end of the assessment, I was told that my son does not qualify for services but that I may want to look into sensory integration issues.....what????

I did some online research and then freaked out. I had already had to fight his doctor for the tubes in his ears (which did by the way end the constant cycle of ear infections) and for the referral to a pediatric GI (who put him on miralax and ended my son's misery, holding, and constipation). So I found a new pediatrician, brought my son in, and told him the whole story. He immediately agreed that there were motor issues and referred my son to a pediatric OT for testing. My son was diagnosed with a mixed reaction SPD. As I have read more and more, I understand my son more, but have become overwhelmed by the responsibility that now lays in my hands to ensure him the best possible treatment and life.

My son is in once/week OT. He continues to be in dance, swimming, and other group activities, but now the instructors understand him and are better able to "manage" him. I am looking into hippotherapy. However, I do not believe in completely altering his diet or his environment to accomodate the diagnosis. He has always eaten a well balanced diet, although there are some textures that he struggles with. I respect other parents who try to adhere to casein free or gluten free diets, but I am not one of them. I still want to take my son to family reunions and McDonald's playland and every other normal activity; I believe it is important to help him learn how to self regulate and moderate his reactions in these situations, but I do not believe in completely eliminating the source of his issues because that is not real life. I have checked out other forums and feel somewhat out of place. My son is not autistic, he has only SPD (although at some point we may have to address ADHD if there is not improvement in his ability to focus). I am hoping to find other caregivers who are dedicated to helping their loved one within the realities of the demands of realistic everyday life. Finally, I have been unable to find a support group in my area of other parents dealing with SPD. I live in the Green Bay, WI area and would love to talk and share resources with other parents in the area. My son receives his OT through Bellin Sports Clinic on the west side (even though I live closer to the east side) and I am planning on talking to them to gauge whether they may put together a group of SPD parents.