A Life Apart: Parent Perspective on Living with a Child with Asperger’s

LESSON SEVEN: Going through the Educational Maze

OBJECTIVE: Identify strengths/weaknesses (potential pitfalls) at each level of education

STARTING EARLY

The generally agreed- upon message here is that a child on the autism spectrum should receive intervention as soon as possible. While the methodology may vary, some components of a good program include occupational therapy with sensory integration, speech and language to work on pragmatics, and behavioral intervention.
Early intervention programs are mandated to serve children from birth to age 3.
www.dec-sped.org

I can only say that in the era when my son was diagnosed, no one was providing the intensive school and home-based programs that exist today. Could hours and hours of intervention have helped? Would he be different today? I don’t know but I know our lives were so stressful at that time, that frankly, having hours of intervention in our home would have added stress.

Many communities start inclusion right in pre-school with a program that serves both special needs children and typically developing children with specialists in the classroom.

Inclusion has been the standard for many years. To me inclusion is not an across-the-board decision, a one-size-fits-all approach. Not every child will benefit every year from inclusion. Children with Asperger’s Syndrome typically don’t model so the idea that they can obtain social skills by being side by side with typical children doesn’t fly. After all, many of our children on the spectrum live with typically developing siblings or have typically developing neighborhood playmates. They are surrounded by appropriate social behavior but just “being there” doesn’t make the social skills rub off.

While inclusion might be suitable at a certain point in a child’s school career, there may be other times when the child needs the specialized and supportive and individualized attention where the setting might not be appropriate.
Keep an open mind. You know your child best.

SCHOOL “DAZE”

Often the first sign that our children are not moving along the typical developmental path shows up when they enter school, nursery school, where social demands are placed on them. Those social demands only increase. As a child passes through grade school, middle school and high school, social demands and academic demands become more intense. Our children do not do well under any kind of pressure and stress.

I say school “daze” because when my son came to first grade in a public school, albeit in a segregated classroom, (remember the era-fifteen years ago or so), I think most special education teachers had not experienced a student like him. Because autism is complex, with a constellation of deficits, he was, as his teacher said, one of her most “challenging” students in her 30-year career.
We learned together. Fortunately now there are so many conferences and so much material that no one should be in a daze, at least not in grade school.
In secondary school, the challenge is greater for our child and for the staff precisely because of the social demands and the multiplicity of staff interacting with the child.

SAME BOOK, SAME PAGE

By this I mean that in the secondary level, it is crucial that the special educators, aides and regular education teachers meet frequently as a team (completely apart from the IEP meeting). I am suggesting a weekly meeting with the key players. Students with Asperger’s are not likely to be forthcoming in their communication or if they are, they may not be able to self-advocate. And you cannot be the liaison, tying every loose end together. But one key player must take on that role.

There probably is not an adult alive who could honestly look back and say: ”Junior High school was the best time of my life!” The combination of hormonal surges, goofy energy, cliques and general awkwardness makes for some tough times. This is the time to fit in. Our children don’t. For my son, these were two years of sadness. His one friend from fifth and sixth grade abandoned him. The epitome of success in junior high is to be cool. My son was not. So how uncool would it be for this friend to hang out with him. Very uncool. My son had no idea how to initiate any appropriate show of interest in a girl. Staring and following her are not cool. He definitely was not cool.

In elementary school, he was respected for his intelligence – or at least his wealth of knowledge on a few topics like dinosaurs. In junior high, intelligence doesn’t buy you much. It’s how you look, how you dress, how you talk. Junior high or middle school is a social pressure cooker – lots of hormonally challenged kids who act cool but are brimming with insecurity on the inside.

My son would stand in the door way of his resource room, just watching the kids go by, almost as though he was trying to figure out how it all works for them. How do they manage to find a “pack” of friends and travel in a pack? The teacher found this heartening; I found it terribly sad.

High school was better. While there was somewhat more tolerance, my son also ran into trouble with his poor and immature social judgement around girls. The combination of his perseveration and his inability to maintain and initiate a conversation mixed with surges of testosterone made for some difficult times.

At whatever grade level, it is important that our children have an ally. It doesn’t have to be a special educator or even a classroom teacher. It could be the librarian, the nurse, the janitor. Someone who demonstrates genuine interest and who provides a safe haven.
For my son, the junior high nurse became his friend. When he would feel overwhelmed, that’s where he went to settle himself. After all, what could be bad? He had a comfortable bed and a place where no one bothered him.

Many students with Asperger’s like sci/fi or Japanese anime or movies in general. Why not propose an after-school club? There are always other students on the periphery for other reasons that would probably like having this kind of activity.

  

SQUARE PEG-ROUND HOLE

To think about:

Our children are square pegs but we – and this would be the collective “we” – often try to squeeze and mold that square peg to fit into the round hole. It doesn’t work. Why can’t the “hole” be stretched and molded so the square peg can have a better chance to fit? Or as an adult friend with autism put it so concretely in an email to me about my son: “A leopard can’t change its spots, but it can change its tree.” So how do we accomplish this in a school setting?