Alex's SPD Journey

My son's name is Alex and he is 8 years old. 

I first noticed something was wrong when he was in the 1st grade. He started to roll up his pant legs. I thought this was a little unusual but I let him go ahead and do it because if I didn't he would get mad and cry. I thought it would pass but I was wrong. Things just got worse as time went on.

Even as a baby he didn't like to wear certain clothing such as overalls with the shoulder straps. As I look back I can remember things that he did that I didn't think nothing of at the time. In preschool he had a hard time switching to different centers. He wanted to do the same thing all the time. He would not wear turtlenecks, shirts with collars, buttons, or zippers. These all bothered him. I would try and force him to wear these things. He would cry and throw a fit so I just started buying him sweatpants and t-shirts. He was happy with wearing those. Socks is another story. I would go through 4 or 5 pairs of socks every morning before I found a pair that didn't bother him. If a seam touched is toe if would cry and say it hurts.

I started to realize that Alex needed help when his teacher called me one day and told me that Alex was becoming socially withdrawn at school and seemed to be in his own little world. I talked to the school counselor and that is when she suggested that he had some sensory issues. That is when I got on the internet and found your website. I couldn't believe what I was reading. Everything fit Alex to a tee. I had found out what was wrong!
I have had a long hard battle getting my son the help he needs, but I have finally succeeded! It was a long drawn out process. I first started with taking my son to Somerset Mental Health to have him screened for many different things, like ADD, OCD, Aspergers, etc. All of these were ruled out. All they could find was sensory integration problems.

I also took him to a neurologist. His advice was to force my son to wear the clothes that he has problems with and he would eventually get used to it! I didn't agree with this. I talked with the O.T. at my son's school and she advised against this. I'm not going to force my son to wear clothes that irritate him. I know, in my heart, he needs Occupational Therapy to help him deal with these issues.

I even had to change pediatricians because his old one didn't believe in SPD. He would not give me a referral to see an O.T. and my son's insurance will not pay for O.T. without a referral. His new pediatrician is great and he said he would give me a referral for anywhere I needed to take my son. So I have an appointment on June 12 with an O.T. to begin treatment for my son.

This has been so hard on me. I could not get anybody to listen to me for a long time. This has taken months to accomplish. You just don't know how many times I thought about giving up on the whole thing and then I started thinking about my son and how he needed help and I knew that I couldn't give up him.

So I made a printout of the SPD symptom checklist and took Alex to his pediatrician. Was I in for a rude awakening at that visit. I told him what was going on with Alex and he looked at me and said, "I can't help him... he needs a full psychological evaluation, SPD doesn't exist, and that Occupational Therapy will not help him. In other words, he said that my son had mental problems and he needed some inpatient therapy at a mental hospital. I was so shocked I didn't know what to do. But I knew one thing.  I had to change doctors and find one who would listen to me. I can only change providers on my son's insurance once a year and I had to wait over 2 months for that.
That is when I started taking him to Somerset Mental Health to rule out other things. They couldn't find anything other than the sensory issues. In the meantime I changed doctors and that is when I found out that the new doctor's son had sensory issues of his own, and that he believed what I was saying about Alex. That is when I got the referral to see an Occupational Therapist.

Still today I have to buy him a certain kind of underwear, all others bother him. For 3 years now I have had to buy him the same kind of shoe because any other kind bothers him. He will not wear a coat in the winter because he can't stand out it feels around his neck. I think I was in denial the whole time, thinking there is nothing wrong with my child, there couldn't be. Sometimes I would think where did I go wrong. I've done the best that I could. Is it my fault that he does these things? Am I not disciplining him the right way? When your out in public with a child that refuses to try on new shoes or cries because something is not quite right with their clothes and people are looking at you like you are letting your child run your life. Boy, I will tell you that is hard to handle.

When we went to the O.T. on the last week, she did different things with my son such as having him balance on a big ball, throw an 8 pound ball, swing, write, put his hands in a container of rice to find different objects, etc. She told me that he wasn't as strong as an 8 year old should be and that he definitely has a lot of tactile issues. He also drools a lot and she said that was from weak muscles. She is going to teach me how to brush him later on.

The only bad thing is I have to wait 3 to 4 weeks to get approval from his insurance to do the O.T.  But, I have waited this long and a little longer isn't going to kill me. She told me a few things I can do at home in the meantime. So I have to have patience and wait a little longer.

I have had a lot of bumps in the road but I have finally accomplished what needed to be done. Although I am sure I have a lot more bumps to overcome, I am positive we will get there.

I love him so much and I want him have as much of a normal life as possible. I am confident that when my son starts O.T. I will see a big improvement with him. I want to thank you for your website and your advice, without it I would have been lost and my son might not have gotten the help that he so desperately needs.

I just thank God that everything is finally falling in place.

Submitted by Alex's mom.  Reprinted with permission.

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Related Resources and Further Reading

Sensational Journeys: 48 Personal Stories of Sensory Processing Disorder

Real Stories of SPD Families

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