Sensory Processing Disorder

I think I'll start this blog entry by explaning more about what's going on with Seth. He has always been very cautious and avoided things like getting messy or dirty, loud noises, and crowds. He doesn't like bouncy houses much. A few months ago we went to Jumpzone ( a place with big inflatables). He went up the ladder to the top of the slide and then proceeded to scream and cry because he was afraid to go down. He will not finger paint, get in the sandbox, or anything else where he might get messy. He also can't feed the cats their food because the smell of the catfood gets on his hands. When we go somewhere crowded he gets very anxious and we can't stay very long. He's also awkward socially. He usually watches a group of kids play but doesn't participate. He also has trouble making friends. While I was researching SPD, it was said that kids with SPD desperately want to participate in social activities but they can't. Playdates with Seth can only last an hour or two at most. Then he needs to be alone. Tags in his clothes bother him. He has a hard time giving people outside of his immediate family hugs. At church there is a little indoor playground. It took him 2 years to go down the slide there. He is also very sensitive to pain. When he falls and just gets a little bump or scratch he will cry for much longer than a normal kid would. He also says it hurts to get his fingernails and toenails clipped. In the past few months Seth has began to have breakdowns. We thought he was just being passive agressive or tired, but it's because he gets overwhelmed and doesn't know how to process all the stimulation.

He also needs a routine. When we go on vacation and we don't eat and go to bed at the same time we do at home, his behavior is affected. Usually after we return from a trip it takes a week for him to calm down.

The treatment for SPD is occupational therapy and a sensory diet (certain activities/objects like a weighted blanket can help). I have a few good friends who's children have SPD/aspergers who have really helped me along the way. I've always known something was "off" with Seth but I never knew what. They have given me support, helped educate me about SPD, and have done so much with helping me get him evaluated. They understand.

Seth is a sensory avoider, meaning he avoids activities that are very sensory oriented. Normal sensation from day to day living interrupts these children's functioning and makes it virtually impossible for them to learn or socialize appropriately. Many times these children have a low self-esteem because they think that nobody likes them and they have no friends. They also tend to be perfectionistic. When Seth makes even the smallest mistake while he's doing his schoolwork (something that only needs to be erased and fixed) many times he will throw his pencil, burst out into tears that he can't do anything and messed up, and then proceed to run to his room and cry in there for a long time. I don't know how to calm him down.

Through this process of learning about SPD, we have realized that Josh also has SPD. It really affected him as a child and he still has lasting effects. He has told me that going to the barn and getting dirty was very hard for him. When he was working outside in the rain, each raindrop felt like a needle on his skin. He hated anything that had to do with being upside down or with his feet off the ground. He remembers watching the kids on the playground and desperately wanting to play with them but he just couldn't. He talks about noises in crowded places being very, very loud. When he was a teenager, to cope he became very angry and did things like punch walls. To this day, he has a hard time being touched. He needs a lot of personal space. Even a hug from me, if not expected causes him to jump. He also has issues with self-esteem and thinking that nobody likes him.

I've been asked "isn't SPD just a quirk? Lots of kids have issues with things like tags on their clothes." The answer is that SPD isn't a quirk. It's a disorder in which a person can't process out the sensory input they are receiving. It becomes an issue when it affects their everyday life. Many people have certain "quirks" like food texture issues, but when a person has so many issues that it's affecting their everyday life then it's not just a quirk.

I've also been asked why Seth needs therapy. The argument is that he will learn to cope no matter what. Yes, he will learn to cope just like Josh learned to cope but he will have lasting effects from it. As you've read, Josh still has lasting negative effects because he didn't get help (mainly because it's such a new field of study).

I've also been asked "He can hear you talking about him to the pediatrician. He'll know something is wrong. He hears". Yes he hears. I struggled with how to tell Seth that something is wrong. Josh talked to me the other night and said "it would've really helped me if I knew what was wrong with me and didn't just think I was a loser. Just be honest with him.

A very good website to go to to learn more about SPD is: http://www.hartleysboys.com/p/favortie-blog-posts.html.

It's been very hard on me learning how to deal with this. Even though many kids with SPD are gifted and have academic abitilies above their age/grade level they still are considered special needs. Honestly, I didn't want to have a special needs child. I just want all my kids to be normal. As I watch him in social situations not acting like the other boys or just watching because he can't bring himself to participate make me sad and upset. Not knowing how to calm him down when he has a breakdown is heartbreaking. A mother's job is to comfort and sometimes I can't comfort him.

This brings me to the issue of schooling. I was planning on sending him back to public school next year. After finding out what is going on with him and realizing that those breakdowns when he got home from school earlier this year weren't normal I think it's best to keep him home. It hasn't been an easy decision but I think it's the right decision for us. I could send him to school, but he would have to have an IEP, and it's a bunch of red tape to get the school to agree to all of it, and I'd be taking him out of school for therapy, and you can't request certain teachers. Socially it will be very hard for him too. Josh was miserable in school. Sometimes even the lights bothered him.

So, hopefully you all undestand a bit more about what's going on with Seth and understand more about SPD.

A quick update

I know I haven't been very good at posting lately. There has been a lot going on lately.

On May 7, Ethan turned 1! I can't believe how fast the year has gone. Josh's mom came for the weekend. We always enjoy having her here. The kids have a great time with Gram. Then on Saturday, Josh's sister and her family came for Ethan's birthday party. It was a farm theme. The kids had a great time playing with their cousins Jayna and Joycie. Ethan stuck his finger in his birthday cupcake but didn't eat it. Ethan is also beginning to walk. He does this funny little walk on his knees. I can't really describle it. I think he walks that way so he can hold something in both hands and still get around. Here's the link to it: http://www.youtube.com/watch?v=NRogrEgryb4&feature=player_detailpage

Mother's Day was nice. All four kids got dedicated at church. We had been between churches every other time there was a dedication or forgot to sign up. It was so special that all the kids got dedicated at the same time.

Recently, Seth has been diagnosed with sensory processing disorder (SPD, also called sensory integration dysfunction). For all of his life he has avoided certain things/activities that have to do with his senses. When he was a baby, when I changed his crib sheet (if it was a different sheet) he would touch it and cringe or jump and then cry because it was a different texture. When he was 2, I remember him not wanting to walk on grass or anything outside really. He's always been extra sensitive to noise. He hates loud noises, even noises that don't bother normal people. He's afraid of the vacuum. He's also a picky eater. He won't eat scrambled eggs, melted cheese, mashed potatoes, or anything with a real soft texture.
Here is a good short description of SPD: A. Jean Ayres, PhD likened SPD to "a neurological ‘traffic jam’ that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly." People with SPD have trouble functioning normally in social situations. Seth is usually awkward in social situations. He has trouble making friends. Playdates can only last an hour or two. Lately he has been having meltdowns. When he doesn't do something perfectly or something goes just a little bit wrong or I raise my voice he basically has a complete breakdown. I don't know how to handle it. I usually just have to leave him alone until he calms down.
SPD can be associated with Aspergers which is on the autism spectrum. We're not sure if he has Aspergers yet. The treatment for SPD is occupational therapy. Yesterday Seth had an evaluation with an occupational therapist. We should hear back in a few days what she thinks and how much therapy is needed. I will try to write another blog post just on SPD.

So that is a short update on what has been going on in our lives lately.