Autism-World

I always suspected there was something different about my son Jacob. When he was a baby I’d put him in the backyard to crawl, but he’d cry and arch his back, arms, and legs in the air. I remember wondering if he hated feeling the grass — but what could be wrong with the feel of grass?

When he was one year old, Jacob would put his forehead on the floor and push it across the carpet. We’d laugh, but now I realize he probably did it for visual stimulation. He also had worse temper tantrums than my daughter, but at the time I just thought “that’s how boys are.”

In School. And Out.

When Jacob turned three I put him into pre-school. It was hard for him. He had temper tantrums and was aggressive — even toward Mrs. Kaye, a teacher I’d known all my life. She taught me in Sunday school and was a very godly woman and when she told me she thought maybe Jacob wasn’t emotionally ready for school, I trusted her. I’m sure it didn’t help things that Jacob’s father and I had just recently separated.

“We started him on Ritalin by day and clonidine at night — this was the start of a new Jacob.”

So I did what was right. I took Jacob out of the school, and then to his pediatrician. I told the doctor of Jacob’s trouble in school and how, since we got him a “big boy” bed, he got up constantly and it took forever to get him down at night. This was the same doctor I had gone to growing up (as you can see I have a very good support system going on here) and he recommended we wait and see how Jacob did over the next few months.

So I worked with Jacob the best I could over that time, though trying to make it on my own as a single mom of two children didn’t lighten the load. Eventually the pediatrician diagnosed Jacob with ADHD and we started him on Ritalin by day and clonidine at night — very small doses to begin with, until we could see how he reacted to the medication.

A New Boy

This was the start of a new Jacob. Ritalin helped him calm down, though some aggression remained. Yet I was so happy there was something I could do to help. I also got Jacob into counseling but it was a very bad match — the counselor talked to me like I was a child. I can’t have that! I believe that if you’re not happy with the medical care you’re getting, leave. Your child’s emotional and psychological needs will only be met if you and the doctor understand and respect each other.

Eventually Jacob did go back to Mrs. Kaye’s class, and graduated; we were so proud of his progress. About this time I also met a new man and eventually we married. I hoped that the stability of having a man in Jacob’s life would help him emotionally.

The Next Step

Jacob started first grade with Mrs. Kaye’s daughter-in-law, Mrs. Close, as his teacher. Mrs. Close has a lot of Mrs. Kaye traits and this was when Jacob’s real diagnosis began.

Mrs. Close told me of many of Jacob’s issues at school: his aggressiveness towards other children, and of how he would rather be alone at recess. His hostility when people touched him on the head or anywhere above the neck. And his handwriting was very sloppy and his reading skills were not progressing like the others.

“I’m still trying to deal with Jacob’s aggression; he gets so frustrated and lashes out.”

My husband’s brother has some learning difficulties so it was natural for him to ask me if I’d ever thought Jacob might be autistic. My reaction: no way! My son couldn’t be autistic because he can walk and talk. Obviously that’s before I knew what autism was. When I asked my pediatrician what to do he recommended psychological testing for Jacob.

Diagnosis at Last

It turns out that Jacob has Asperger Syndrome (AS), a form of autism. AS affects Jacob’s social interaction, and creates difficulties in dealing with changes in routines. He’ll also notice the slightest changes in smell, or the taste of something different.

This doesn’t mean he can’t learn — he can, of course. His reading skills have greatly improved, so much that he’s now finishing second grade and reads on a fourth grade level. He can also remember directions very well, like where in an office building a new doctor’s office is, or how to get somewhere when we’re driving in the car.

Concerns

There are still problems. I’m still trying to deal with Jacob’s aggression; he gets so frustrated and lashes out. He’ll also hug anyone, anywhere, or say whatever’s on his mind. One day he saw a little person and said, “You’re short,” to her. I told him that God makes us all different and that he loves us all. Then I apologized to her and explained that Jacob has autism and doesn’t understand he might hurt another person’s feelings by what he says. I’m so glad she understood.

Next year Jacob starts at a new school because he’s been suspended from his current school for hitting kids. Fortunately he’s going to be in a class with no more than ten kids, one teacher, and two teacher’s aides. His doctor says this will be a good program for him, and will help teach him social skills.

For a while the combination of Risperdal, Ritalin, and clonidine helped Jacob a great deal in school and with some management of his aggression, but now, at 8, he’s going through another medication change because his aggression again became a problem.

We took him off Risperdal and now we’re back to trying different medications to see what is best for him. I am so glad to have a doctor who listens to my concerns and takes everything into consideration: my worries, the letters from school, the new therapies available to help Jacob. She truly is a gift from God.

Adapting

Our lifestyle has changed since we found out about Jacob. My husband and I don’t leave the kids with anyone but family or one close friend that is his godmother and a registered nurse. I don’t feel others will be as understanding of Jacob’s condition as we are, so if we don’t have a sitter we just don’t go out.

“My long-term goals are to hopefully ‘get through’ to Jacob”

Jacob’s sister and step-brother try their best to understand his issues, but they’re kids themselves — Curtis is ten and Brianna will be ten this June — and that closeness in all their ages can play against them.

I find a lot of support through my family, but I’ve also found it online with the groups at Yahoo. Browse under “groups” and “family” and you can find whatever you’re looking for. If you’re looking for Asperger Syndrome, check under “special needs kids.”

Goals

My long-term goals are to hopefully “get through” to Jacob. I want him to finally be able to understand himself. I want him to be able to tell me why he reacts the way he does when he gets mad.

I want him to be able to help himself.

Advice

Never give up searching for the right doctor for your child. It’s imperative that you have the right relationship with your child’s psychologist and psychiatrist. If you ever have a question about something, ask! Your child is most important here. And educate yourself; get as much information as you can, and find a good support group. You’re not alone; someone is going through the same thing you are.

“Do as you say and say as you do.” This quote, taught to me by my daddy (who I sadly lost in June 2000), is what I live by. If you live by these words, you’ll find that not only do your children learn respect, but you learn to commit to your children.

This entry was posted on Monday, March 26th, 2007 at 10:33 am and is filed under Autism Stories.