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.

The challenge of being a "normal" kid when you have something like SPD can be a lot of work. Usually something else will slide (often grades) if a person with SPD doesn't get the accommodations that prevent/lower some of the distractions.

I was a "normal" kid. I figured out a lot of my necessary management techniques on my own to make the outside world bearable. However, my SPD didn't get bad until I was an adult.

If my SPD was as bad as it is now while in K-12, I would have been borderline catatonic in my classes. My last Masters classes in Engineering were pure hell as far as my sensory problems negatively affecting my abilities to pay attention, take exams, and not pass out from the pain. I did collapse regularly (due to too much sensory input) in classes during college and my fellow students often helped me out (threw all their jackets on me when I was cold, carried my books & bags, ignored my carcass on the floor when I asked them to).

Your comment about McDonald's made me shiver. I have food allergies. Very bad food allergies. McDonald's was one of the first places that I realized I had something very wrong with me. McDonald's food (even just thier fountain sodas) caused me to projectile vomit as a kid. As an adult just a bag of McDonald's food passing by me in a hallway is enough for me to end up in the ER with Anaphalyctic Shock. I have a friend that worked for McDonalds. She had to take a shower between working there and seeing me or I would have problems breathing.

If your son avoids something and can't tell you why, assume there is a good reason to it. I didn't know why girl's lacy dresses caused me so much pain, but I refused to wear them. I used all sorts of excuses (except saying that they hurt) when I was a kid to get out of wearing them. I didn't mind wearing dresses made of Cotton, but those weren't easy to find.

Some accommodations by parents make it easier for an individual with SPD to function as close to "normal". Without accommodations, the sensory problems just keep getting worse until a person can become basically non-functional.

First of all, nice to meet you! I'm so glad more people are finding this little nook on the 'net. I had similar problems with finding like-minded sites, too. It was a wonderful thing to find myself here, and our fearless leaders are great folks. We're just starting out, but hopefully, the networking will grow for all of us.

I am an adult with SPD, and I'm brand new to the idea, so I don't have any concrete advice to give you on your son's coping. However, there are several very experienced people here with diverse backgrounds that can provide you with more info. I haven't tried diet issues, either, but I know I instinctively avoid certain foods that give me problems. Luckily, they are few and far between. I definitely second beck on avoidance; if your son is avoiding something, chances are he can't filter out whatever bothers him about it. But as sensitive a parent as you are, I'm sure you are becoming more aware of those things and are helping him with that. Some things disorganize more than others. The trick is finding a good balance between organizing and dealing with the things you can't organize, like "real life."

I look forward to hearing more about you and your son, SPD stuff, ADHD stuff, and just plain old life stuff. I hope you have a chance to enjoy it here.