Our son is different from most other children his age.  From a distance, he looks like any other ten-year-old boy.  However, when he is observed more closely, there are telltale signs that he is different.  It’s not just the way he walks and talks.  Those are just outward signs of the deep turmoil that exists within him.  Our son perceives his surroundings and many experiences of normal daily life as overwhelming and, at times, very scary.  He was finally diagnosed with Sensory Processing Disorder when he was almost six years old.

From the time he was very young, I knew that our son was unlike other children.  I just could not get anyone to understand what I saw and felt.  Even my husband did not notice the things that I did.  Our son was healthy, but my motherly instincts could sense something was out of place.  I brought this up at every routine pediatric appointment, but I could not get the doctor to see that there was something wrong.  He just passed it off as the fears of a new mother. He tried to calm me by saying that all babies are different and develop at their own rate.  I was not convinced.  I watched our son closely as he grew.  He hit some developmental milestones long before the average child and others well after all of his peers had mastered them.  This was very confusing and frustrating to me because I could not pinpoint anything that I could take to his pediatrician, yet the feeling of his being different persisted and grew stronger.

His toddler years brought me the most confusion and frustration.  At that time, I was working in the childcare field and I had helped many children through potty training, but I was having very little success with our own son.  My frustration caused arguments with my husband and I felt like everyone was against me.  I felt ashamed of my own parenting skills. I felt frustrated that our son could stay completely dry all night, yet wet his pants several times during the day.  People told me that he was just being defiant and I should punish him, but something told me that was not the answer.  When my son was almost five and still wetting himself, I asked him why he didn’t want to stay dry all day like other big kids.  He said, “Mommy, I didn’t know that it was coming out.”  At first, I thought that was a strange answer, but after reflecting on it, I wondered if he was really telling the truth.  Was this the key to understanding why I sensed that he was different?  At the next pediatric appointment, I told the doctor what he said.  Once again, I was told that children develop at their own rate. This time, the doctor even added that boys are sometimes not fully potty trained until they are four or five years old.

Our son grew and so did his differences.  He became a very picky eater and our family meals were often unhappy.  Any time that there was something on our son’s fingers, he would get very upset instead of just wiping it off.  I also noticed that he never licked his lips and they would get very chapped.  I tried to put stuff on his lips, but he would cry and wipe it off.  It also seemed like our son was drawing closer to me and expanding the distance between himself and other people.  The thing that really broke my heart was the distance that was developing between him and my husband.  The harder my husband tried to get close to our son, the more upset and withdrawn our son would become.  Sometimes, our son would be crying in my arms because my husband simply wanted to hug him.  I would look up and see the terrible sadness in my husband’s eyes.  I was torn between comforting the two most important people in my life.  I felt I had to take care of our son first.  I noticed that my choice affected the close bond I had with my husband and a distance developed between us.  I was hurt that he did not understand that I had to take care of our son, but I knew that I was the only one that could help our son feel secure.

As the start of Kindergarten approached, I was worried that our son would have trouble coping with being in school all day.  Among other things, he was still going up and down the stairs by putting both feet on each step. He barely made any attempts to write, draw or color.  But the pediatrician still saw nothing wrong with our son.  My husband and I decided that it might be better to home school our son in order to give him more time to catch up on these physical developments. 

During that time, I was also involved with an Internet group of mothers. I came across a post that sounded like the woman was describing our son, even though it was about her own daughter.  The woman said that her child had something called Sensory Processing Disorder (SPD), which causes the person’s sensory organs to perceive things differently than they are commonly perceived.  It can affect the whole body or just some aspects, such as the oral or tactile senses.  It can make the person hyper-sensitive or seemingly unaffected by sensory input.  I asked her for more information and she directed me to a website that had a checklist of SPD symptoms.  I went through the checklist and I just knew that this is what I saw in our son.  I took the checklist to the pediatrician, but he did not seem concerned.  I insisted that he help us by referring us to a specialist. 

At nearly six years old, our son was finally diagnosed and I had a name for what our son was experiencing.  I found out that his SPD makes him hypersensitive when it comes to oral, audio, tactile, and proprioceptive (sensation of movement and body position) input.  I read everything that I could on SPD, and things really started to make sense.  I even found a book that gave me an explanation for the difficulties I had in potty training him.  He was telling me the truth about not knowing he was urinating because the book mentioned how some people with SPD cannot sense things happening within their own body, such as the urge to urinate or the sensation of the urine moving out of the body. 

There is no actual cure for SPD, but I was told that Occupational Therapy might help our son cope with his hypersensitivities.  He started going to therapy sessions every week and I did see many improvements in his ability to cope with everyday situations and his surroundings.  However, the differences between our son and other children his age became more and more evident over the years.  He started attending public school in the third grade and he has an Individual Educational Plan (IEP) that helps him cope there.  He is still slow on stairs, he refuses to eat or drink anything at school and he does not interact with his peers voluntarily.  He is also very fearful of many different things.  He is now ten years old and I feel that I constantly need to tell people about Sensory Processing Disorder and our son’s struggle to deal with things which are no problem for other kids his age.  Many people actually say that his difficulties are my fault because I was not strict enough with him and never made him do things.  They do not see the child that I see, nor can they begin to imagine the world that my son sees as so overwhelming, and at times, very scary.

Further Reading
1.  Wikipedia Article on SPD
2.  More information on the IEP from the National Dissemination Center for Children with Disabilities