Guest Column by Kelly Wassenberg

 

My experience of having a school-aged child is same as that of many others in some ways — and quite different than others.

At the beginning of this school year, I met my daughter’s new classroom teacher and we spoke about how to make sure Kylee gets the most out of her school year, except we weren’t discussing the importance of reading to your child or homework help. We were creating a game plan on how to teach an 18-year-old to fold clothes, use a microwave and other life skills she will need as she transitions into adulthood, and we were joined by a dozen other specialists.

My family lives in a world of acronyms like IEP, IDEA, FAPE and LRE. We live in the world of special education. It was a world I once resented until I learned something — I had much more power than I ever realized. It’s something I wish I would have known from the start, and something I readily share now.

Every child is entitled to a free and appropriate public education in the least restrictive environment possible through the Individuals with Disabilities Education Act. Parents play an instrumental role in deciding what is written into the individual education plan to ensure their child has success.

Every situation is different, but I feel every parent should empower themselves by learning about their rights and special education law in general. As sad as it is to say, there are some mistakes made out of pure ignorance. I caught something in a proposed IEP for my daughter that was not allowed — a recommendation for a child to get indirect services without time allotted for direct services.

A therapist must have direct time allotted even when children receive indirect services because it is their responsibility to train staff on programming, supervise services on an ongoing basis and modify programming as needed. When I pointed this out to an administrator, I had to explain that. By this time, I had a legal advocate involved, so I don’t believe the move was intentional.

Knowing your rights as a parent is essential, but we also must try to understand the 360.

While encouraging our children to participate in activities with their same-aged peers, we also must realize that there are times that it is best they don’t. While we would all like to believe that our child could have a meltdown in class and people can be understanding — sometimes they are not and the child gets unfairly stereotyped.

As parents we need to encourage inclusion when it can be done successfully and we need to insist that our children’s schools are fostering an environment of inclusion. There is a balance that I believe should be kept.

I remember a teacher scowling at my daughter for making a noise in the hall and almost every child in the class mirrored her response. During another similar situation, a different teacher told her students that Kylee was saying hi and encouraged them to wave. Years later when I walked the halls of the school, students in that teacher’s class would still wave to Kylee when they saw her. So, be patient with kids in your child’s classrooms. If they have a poor response to a situation, it’s most likely because they’ve never been in it before or they had a bad mentor.

First and foremost, I never forget that I’m an advocate and I encourage others to do the same. There are people at my daughter’s home school district that will purposefully look the other direction when they see me in public. That’s OK. I’d even go as far as to say it’s somewhat deserved. But my daughter’s tuition to another school district is being paid for by her home district for a reason.

Kylee wasn’t making progress at her home district, even though she had documented progress while working with an in-home behavioral analyst and therapist who worked with her. Agreeing to pay her tuition elsewhere was, in a way, settling a lawsuit I had not yet filed.

In the end, my situation wasn’t entirely the school staff’s fault. They just didn’t have what Kylee needed — but that’s not an excuse.

It’s not a case of “If you don’t like it, go somewhere else” either. It’s the school district’s responsibility to provide their staff with adequate resources to provide for their students’ needs, even if that means hiring outside specialists. I can’t promise you’ll make any friends over the actions you take to make it happen. But I can promise you, your child is worth the fight.

Kelly Wassenberg is a proud autism mom and Tribune newsroom staff member.