News and Knowledge

For this month’s Message, The OARacle is featuring two parents’ perspectives on what back-to-school means for their children and families. School is one of the most critical elements of future success for all children, meaning that every decision – including something as basic as selecting the right school – can be a difficult endeavor for even the most informed parents. If you have a child with autism, the stress and anxiety is multiplied as finding the right learning environment (and making it truly work for your child) can be an ongoing struggle.

Nikki Sterling: Facing the Tumult

While many of our contemporaries with typically developing children are agonizing over back-to-school lists, backpacks and wardrobe shopping, many parents of children on the spectrum are still grappling with the issue of school placement. Some are nervously anticipating the outcome of placement changes, knowing that transitions are harder for our children. Others, like me, still have no clue where their child will be attending school in the fall.

Talk about agonizing! We all want a program that nurtures our child’s academic and social growth. Yet for many, it’s like searching for a needle in a haystack.

It’s often the middle-of-the-road child who has the most challenges in the classroom. Therapeutic day programs for children on the spectrum are wonderful alternatives for those whose diagnosis is more severe, and there are great supports for the high-functioning child who can “fit” into the general education classroom with the assistance of a dedicated paraprofessional.

Parents of children whose symptoms are not quite severe enough to warrant autism day school placement and who are intellectually adept but not able to succeed in the general education classroom face a more difficult struggle. I am one of those parents. After a successful stint as a happy boy in a blended pre-school program, my son Jeremy barely escaped kindergarten with a half-hearted smile.

He began the year with a paraprofessional in a classroom of 23 students. By the third month, we saw an increase in his challenging behaviors. Because of this, his placement was changed mid-year to a verbal behavior-based classroom designed for higher functioning children with autism at another school within the special education cooperative that my district belongs to. Awesome, right? Wrong!

Instead of flourishing, he floundered. Instead of his behaviors decreasing, they escalated in frequency and intensity. Socially, he became less engaged and emotionally he was drained. What happened to our happy and smart little boy?

This change in placement took place just before winter break. By mid-April, the school district was pressuring me to change placement again to an alternative school for behaviorally challenged children. Wait, what? With six weeks left in the school year? I gave them an emphatic “NO.”

Navigating this tumultuous school year has taught me several things:

• First and foremost, parents are the most important advocate a child will ever have. It all starts and ends with us. Harness that power and use it to advocate effectively for your child. Educate yourself on your rights and on all the options offered within your school district.

• Second, as a student of applied behavior analysis, I learned to look at one thing: data, data, (and even more) data!  Make sure that you have copies of all of your child’s reports, tests, incidents, etc. Before you agree to any placement or plan, review all the information. If you don’t understand, ask questions to ensure that you do.

• Third, never “go along” just to “get along.” By nature, we want to be liked and many avoid confrontation toward that end. Don’t. Learn how to disagree without being disagreeable. It is both an art form and a necessity.

• Last, hindsight is always 20/20. It brings tears to my eyes each time I think about how traumatic this past school year was for Jeremy. If I knew then what I know now, we would not have endured as much frustration as we did. Still, we can’t beat ourselves up over choices that didn’t work as we had hoped they would. Most decisions along the autism journey are trial and error. You never know what is going to work until it does…or doesn’t. What appears ideal on paper, the treatment or classroom that worked for another child, or even the recommendation of experts, might not be the right course of action for your family.

So, here we are. It’s August, and I am filled with angst as I make plans for him to return to school. Where will he attend? Will it be the right placement decision? Will he be successful?  Will I need to turn to medication?  Will I need to home school? As I enter another year of unknowns, I don’t have any answers. But I do so with baited breath, faith, and hope for a brighter tomorrow.

Dan Padilla: Learning to Accept What Works

Getting my son, Josh, ready for each new school has probably been one of the easiest things we’ve had to do as parents of a child with autism. Why? Well, first and foremost, Josh absolutely loves school and is ready to go at least a half hour before his bus arrives.

For that, we can thank his grade school, which has also well prepared him for high school. My school district includes a self-contained special education school, which Josh attended. At first I was against this placement because I was more interested in inclusion and a “normal” educational setting. In this case, I was wrong. Josh flourished at his school and now I am a big cheerleader for self-contained programs.

From the first day of 8th grade, his teachers were mentioning high school. By the second semester, the eighth graders were making trips to the high school at least once a month. The high school had a teacher/liaison at Josh’s final eighth grade Individualized Education Program (IEP) meeting. By the time Josh finished the year, he was ready for high school.

Summer school also played a major role in his readiness for this new phase of his life. We have sent him to summer school, which is offered by our school district, since he was in sixth grade. As parents, we initially felt that he needed a break from school and weren’t planning to send him. After learning more about children and teens with autism, however, and listening to reason in the form of Josh’s teachers, we signed him up.

I have to say it was the best choice for Josh and his development. As we probably all know, our children don’t usually respond well to change. Keeping to his school routine, even in the summer, provided the opportunities Josh needed to further his education and, most importantly, his social skills.

I know you probably have friends and family who are probably more than willing to watch your child over the summer. Unfortunately, they are probably not trained in special education so your child will get lots of love, but not the attention he or she really needs.

My advice boils down to this: listen to the experts, don’t be afraid to admit that your initial expectations weren’t right, and always, always keep your child’s best interests front and center.