Sensory Integration--the new name of our "game"

Many of you know that Brayden (our oldest) has been diagnosed with Asperger's Syndrome. It has been an uphill battle all the way, but this morning I feel like I finally reached the "top of the hill". Not because I think this is going to get easier, because I'm pretty sure it's only going to get harder, but for the first time in nearly 5 years, I feel validated.

Ten years ago I graduated from Rick's College with a degree in Professional Preschool Education. I never wanted to teach preschool, but when it came time to register for my college classes, my aunt Joyce told me I would be a good preschool teacher.

I still remember where I was standing when she said it.

I went home, looked up the classes, and signed up that day. I really had no idea what I was getting into, but as I continued through the program, I knew why I was there. I felt prompted, more than once, that I was learning those things to help one of my future children.

When Todd and I got engaged, I felt obligated to tell him that I had a feeling that I was going to have a child with a disability...and I've never been so relieved when he looked at me and said, "I've always felt that, too".

Fast forward a few years to Brayden at age 3. He started doing some "weird" things that didn't seem typical to me. I went back through all my preschool stuff, dug up all my behavior info, and did what I'd been taught to do.

And it didn't help.

I talked to the pediatrician, and to the ladies at the WIC office about my concerns, and they told me it was a phase. This was my first child and I was probably a little overprotective.

Brayden's odd behaviors continued, and I continued to get, "it's just a phase", until one day I called my mom in tears because Brayden was throwing a huge tantrum over the fact that every time he dipped his spoon into his cereal, all the cereal pieces would rush towards the spoon, and he only wanted ONE piece of cereal on his spoon.

I ended up putting him in an accredited preschool at Utah State (to the tune of about $100 a month) just to see what they thought. It was only a couple weeks before they noticed what I had seen. One teacher thought he was autistic...another didn't, but it didn't matter to me. Their observations and referral to the CPD (center for person's with disablilities) was what I needed so that I could figure out how to help my son.

Then came the whole debate with giving a "name" to the problem. He is who he is and we love him anyway. Is giving a name to the problem going to help him, or hurt him?

We went forward with the diagnosing process, hoping to be able to find something that would help. At first it was a relief to discover that I wasn't just an overprotective mom, and that we weren't the only ones dealing with this. Brayden is considered "high-functioning" which gives us hope that he will have a pretty normal life, but I still wanted to do everything I could to help him learn the social skills that would make things a little easier. This is when the "uphill battle" began.

We moved to a small town in the middle of nowhere without many resources. The school felt the need to re-diagnose him, and amazingly, they came up with the same results (duh). The problem came when we found out that their willingness to help corresponded with Brayden's academic performance.

I'll spare you all the details and stories and just say that it took me over a year to get him an IEP (individualized education plan) because he is the most high-functioning out of the other 3 kids in our district with the same diagnosis. Whenever I went to the special ed ladies or his teacher with a concern, I got, "he's much better than so and so". It made me so mad I wanted to spit! I don't care how he compares to those kids...I care how he compares to MY kids, who are raised by the same parents ,and they don't have all these other issues. I was then made to feel (again) like I was an overprotective parent, and that the issue was parenting. As long as his grades were good, they were not concerned.

Those of you who know Brayden, know that he is very smart. I've never worried about his grades for one second. With him, it was all about social skills, but no one would help. My friend, Shauntae, put it perfectly when she said, "Why is it always, 'Is he falling behind,' rather than, 'Is he thriving?'"

I was very happy with Brayden's first-grade teacher. Although I still got the "vibe" that she thought I was an over-protective parent, she was willing to listen and do whatever she could to help...and for this I will always be grateful. It was because of her that we finally got an IEP. Also, somewhere along the middle of the year something "clicked" with her, and she started to understand what I was looking for.

Fast forward now, to the last few weeks of first grade and the first part of our summer. Brayden has become obsessed with germs, and washes his hands constantly. His hands are raw, cracked, and bleeding. His brothers taunt him and try to touch him and he runs away screaming and crying. I am torn between wanting to be understanding, and wanting to scream at him because he's so crazy! I knew it was an obsessive compulsive disorder, but I just didn't know how to deal with it. Nothing I tried to say to him helped.

Last week, I finally broke. I asked him to come outside and help me in the garden, and he was trying to open the screen door with his foot, so his hand wouldn't have to touch the handle. I walked over and forced his hand to the handle and it was covered in soap bubbles that he hadn't rinsed off. I picked him up like a two-year-old, yelled at him as I marched him to the bathroom, and I rinsed and dried his hands while both of us sobbed. I called the clinic to get him an appointment and they told us to come in that day.

The Dr. gave us some cream for his hands, and put him on an anti-depressant to help with the anxiety...and I cried for the entire day.

I do not want my 7 year old on Prozac, and yet there is nothing I can do to help him. The doctor called later that day and referred us to the county health nurse, who referred us to the Children's Special Health Clinic, which only happens three times a year in our area. It consists of a pediatrician, a psychiatrist, an occupational therapist, and other professionals who leave the big city and come down to "nowhere" to help those of us who are stranded and helpless.

And, it just so happened that this clinic was the following week. So, today, I took my three boys an hour away at 7:00 in the morning to see if the Occupational Therapist could help.

And that brings me to finally being validated. He was WONDERFUL! He told me that my story was very common among parents of children with Asperger's, because the special ed. teachers in public schools are concerned with academics...not social skills. He said that the day will come when they realize that social problems DO affect academics, but it's a hard sell, and it hasn't happened yet. He agreed with me completely. He also mentioned that the Occupational Therapist who Brayden had seen at school, was looking for things like hand-writing and motor skills (which Brayden has no problem with) and that's why he labeled him "fine" and therefore the special ed teachers think he is "fine" as well.

The OT we met with today, however, has special training in sensory integration, which is apparently what we need, to help Brayden with his social and sensory issues. He did an assessment, and agreed that there IS a need for services, and that there are definitely things we can do to help. And, better yet, while we're working on the OCD tendencies, he says the treatment is usually "systemic" and will likely improve some of his other problems (he nearly has an accident EVERY time he goes to the bathroom).

He is going to be sending us a packet of stuff, and as he described it to me a light went on in my head...and I actually think it's going to help. With Todd being a therapist, I'm pretty sure we can work on this stuff at home (which is ideal since there's no one around to help us). I'm just so relieved to finally have some suggestions for things we can do! I don't want to wait around until it affects his performance at school....I want to prevent those problems, and now I feel like I have someone who can show me how to help my son. He told me to call him anytime, with questions about what to be working on at home, and he'll meet with us again next February (half way through the school year) to see how things are going.

Today I cried tears of joy, rather than tears of frustration.

If any of you made it to the bottom of this post...bless your heart. I know it's long and boring, but I had to get it out, and into my "journal". And for those of you who have a child with special needs (especially those that aren't obvious to the eye), good luck in your battle. I'm happy to commiserate with you any time.