Community Perspective

"I don't want to alarm you, but Š" are not words that anyone particularly wants to hear.

Has anyone ever heard good news that follows that phrase? Like "You're perfectly healthy," or "you've just won the lottery"? Of course not; you know you're being forewarned that you're going to hear something that is not good.

My husband, Butch, and I did not expect to hear those words in February. We were attending the middle school staffing to discuss our son Jayson's IEP for sixth grade in New London-Spicer. IEP meetings give parents and the school support staff a chance to work together to design an Individualized Education Program for children with learning disabilities who are eligible for special education.

Jayson has Asperger's Syndrome, as well as Sensory Defensiveness Disorder (which along with his Asperger's Syndrome means that he is extremely sensitive to all sensory input), and we set goals and benchmarks that we think he will be able to accomplish in his areas of disability in a year's time.

What is Asperger's Syndrome? It is a developmental disorder that today's doctors group with four other conditions - including autism - that are called autism spectrum disorders. According to the Centers for Disease Control's statistics, autism now affects as many as one in every 166 children born in the United States and is the fastest-growing developmental disability in the United States. A child is diagnosed with autism every 21 minutes.

Children with Asperger's Syndrome have problems with social skills and language development, have difficulty with transitions or changes, and prefer sameness. They often have obsessive routines and may be preoccupied with a particular subject of interest. They have a great deal of difficulty making eye contact and reading body language and have difficulty understanding and expressing emotion.

Although they often have extensive vocabularies, they have a hard time communicating with others. They are often overly sensitive to sounds, tastes, smells, and sights. Children with Asperger's Syndrome are typically viewed as eccentric, odd, and weird by classmates; although they have a desire to be part of the social world, their inept social skills often cause them to become victims of bullying and teasing.

This brings me back to our IEP meeting, where I was not prepared to hear, "I don't want to alarm you, but Jayson's at the age where everyone here has to be very watchful for signs of depression." My first reaction was shock, followed closely by disbelief. Depression? He's only going to be entering the sixth grade!

As the school's special education coordinator went on to explain, the teen years are extremely difficult for kids with Asperger's Syndrome, who normally suffer from anxiety anyway. Many develop problems with low self-esteem and depression during adolescence because it is at this time that many become acutely aware of their differences from their peers.

Unfortunately, this is also the time in life when fitting in becomes so critical. According to the recent testing Jayson had undergone, his social skills are those of an eight-year-old; socially, he is a second grader in a fifth grader's body.

Although I've done a lot of research on Asperger's Syndrome and was aware that depression would probably become a concern later on, I wasn't expecting it to start this early. I shouldn't have been surprised, though, as entering fifth grade was a huge transition for Jayson as he moved into the middle school, with a totally unfamiliar building, new teachers and support staff, and a totally new routine.

We've had to make a lot of modifications in his schedule along the way, and he has had to have a full-time aide with him this past year to help decode and explain the more complex and abstract subject matter. They have established a very comfortable and trusting relationship, and Jayson is able to communicate quite easily with her (thank you, Mrs. Engelke!).

Since he was falling asleep every day in social studies, which is in the early afternoon, he now has a "quiet time" before lunch, which allows his senses to decompress, as his body's reaction to sensory overload is just to shut down, thus the falling asleep. He's still a math whiz and is extremely proud (as we are) of his A+ in spelling; he's aced every spelling test this school year!

But how do you teach someone how to feel or understand emotion, or read body language, or have a back-and-forth conversation?

At our IEP meeting, we discussed starting a peer group for Jayson, a small group of kids in his class who could help him practice those things. Five boys and girls - bless their hearts! - volunteered to be in this group, and they meet twice a week, helping Jayson learn how to act and react in different social situations. He's making progress but will always lag behind his peers in social skills.

How much does Jayson understand about his disabilities? More than we realized. How many of you remember Jason McElwain, the autistic basketball team manager who came off the bench and scored 20 points in his final game as a senior this winter?

Although Butch and I missed the TV coverage, some friends managed to tape it for us, and Butch and Jayson watched it together. While discussing the story afterward, they talked about the similarities between the two boys: they both have the same name (although our Jayson said the other one spelled his name wrong!), they both have autism, and they both like to shoot baskets. When Butch asked Jayson how they were different, he replied, "I can't talk to people."

How depressing is it to realize that, at an age when even "normal" kids have a hard time relating to their peers, you can't talk to people? Let's face it: kids can be cruel, now so more than ever. Other kids who don't fit a certain image, measure up to certain expectations, or wear the "right" clothes are routinely called names, made fun of, or ignored.

If your "normal" child is having problems fitting in, imagine how much harder it is for kids like Jayson, who are so socially naive that they are easily taken advantage of? It's a sad fact that Butch and I have had to teach him from an early age how to respond to teasing and bullying, but that doesn't solve the problem. Is it any wonder that the incidence of depression is higher in kids with Asperger's Syndrome than in the general population?

Jayson is already expressing anxiety over what to expect this coming fall as he enters sixth grade. Butch and I are also worried, but, as they say, forewarned is forearmed. We have to trust that we'll be able to recognize any signs of depression, which in kids with Asperger's Syndrome tend to be much harder to discern but may include increasing autistic tendencies and behaviors. We know that he has terrific teachers, aides, and support staff at school who are now familiar with his patterns of behavior and will be just as vigilant as we in being alert to signs of any change.

As stated in an African proverb - "it takes a village to raise a child" - so how can we as a community help Jayson and others like him? By teaching our children tolerance; by taking the time to explain to them that sometimes people look perfectly normal on the outside but on the inside are so very different, and that those who may look different on the outside are just like us on the inside. We need to be patient with those who are different and those who don't, or can't, express emotion or talk or dress the way we do.

Remember the Golden Rule? "Treat others as you want to be treated." This concept applies even more when interacting with people who we feel are "different" from us. It's so simple, and it could make a huge difference not only in the lives of individuals with autism or other disabilities, but in our own as well. We are all God's children, black or white, thin or overweight, pretty or plain, autistic or not. Each one of us is a gift, no matter what the wrapping looks like, and each one needs to be handled with care.

Geier, who lives in Union Grove Township, has written about her son Jayson and Asperger's Syndrome for the last three years in the Press each April.

Would you like to participate as a Community Perspective writer? Call Michael Jacobson at 320-243-3772 to get scheduled as a writer or e-mail him at editor@paynesvillepress.com.