Educational Advocacy: A Parent’s Perspective

“Teachers and community members need to be educated about the fact that people with autism have triggers. They (teachers and community members) need to be educated on what to do to avoid an escalation – including understanding that the person is not being defiant, but that he is just acting out of his ability,” Theresa Baker, mom to Hudson, a student on the autism spectrum.

A common scenario among students with autism, Hudson’s unique way of processing information often clashed with the structure of the school he attended. Like Hudson, many young students with autism often struggle to find the right mix of services and supports to help them excel in school. The Arc Pikes Peak Region’s (The Arc PPR) educational advocates specialize in helping students with special needs, like Hudson, and their families, create strength’s based IEPs (Individualized Education Program) and 504 plans. Today, we have the pleasure of interviewing Hudson’s mom, Theresa. We invite you to learn more about this young man’s story and how The Arc PPR helped Hudson succeed in school.

The Arc Pikes Peak Region (The Arc PPR) How did you first become acquainted with The Arc PPR?

Theresa Baker (TB): My son has autism/Asperger’s, and I knew that my former boss had a son with Asperger’s as well. I would ask her about how he was able to overcome and succeed in life. He was able to be successful with a job and family. Then, a friend referred me to The Arc PPR. After connecting with one of your educational advocates, Hannah, I felt like a weight was lifted from my shoulders.

The Arc PPR: Tell me a little bit more about your story.

TB: After battling with a new school and trying to get them to understand what causes my son to escalate and act out, he ended up getting into some legal trouble. At the heart of the situation, the school had actually violated Hudson’s IEP. Through The Arc Pikes Peak Region, we connected with an educational advocate who came to school meetings and a judicial advocate who came to court with us. With help from the advocates, we were able to get the outcomes we wanted. The story ended well, and the school that Hudson formerly attended is now instituting their own affective needs program. The school realized that there is a true need out there- that it’s not just a discipline problem. Hannah, our educational advocate, was able to write some well-worded letters, outlining steps that needed to be taken by the school.

The Arc PPR: What mindsets have you run into in the Colorado Springs community that are detrimental to people with disabilities and their families?

TB: The first thing I’ve encountered is that a lot of the community sees disabilities like autism or Asperger’s as discipline problems, that people with autism are choosing to act, react and misbehave. The bottom line is that they can’t control it, any more than people with epilepsy can control their seizures. Children with autism can’t avoid an escalation or control their outbursts.

People I speak with in my own circles are reasonable, and see the disability as a struggle. But, because most people don’t understand, I don’t make apologies to people when I speak about my son. In the same way that you can’t put a strobe light on and expect people with epilepsy not to have a seizure, you can’t continue to trigger a person with autism. In Hudson’s story, a certain bell rang when it was time to go to lunch. Because of the class he was in, they wouldn’t let him go to lunch when that bell rang. As a result, he would get upset and tap his foot to release some of his emotion. The teacher would yell at him for tapping his foot.

At another elementary school, the teacher had asked him to write an essay about his family. He wanted to write about a family in a book or in a TV show, but the teacher wanted him to write about his own family. Hudson wanted to write about the Ingalls family. This was a trigger for him. Although the teacher could tell that Hudson was getting upset, she kept insisting, causing him to escalate to a level that he shouldn’t. Teachers and community members need to be educated about the fact that people with autism have triggers, and they need to be educated on what to do to avoid an escalation – including understanding that the person is not being defiant, but that he is just acting out of his ability.

The public’s unease and judgment is also a negative mindset that my family has encountered. My son can get talkative sometimes, and he will get loud and talk about the same thing over and over again. When this happens in a store or restaurant, we often get dirty looks from people. People don’t understand about picking battles.

The Arc PPR: What could the local community do more of to support people with disabilities and their families?

TB: I would encourage people not to feel so awkward around people with disabilities. Don’t say things like, “Go away, you’re weird. Just accept the person as you would accept a friend. People with disabilities, like my son, don’t think that anyone’s going to be mean to them, because they wouldn’t be mean to anyone else. They’d feel happy about a stranger coming to talk to them. When somebody with a disability speaks to you, look at it as an honor rather than an annoyance that they’re taking you away from what you’re doing or thinking. If people on the autism spectrum tell you a joke, don’t tell them that you think it is stupid. Just laugh.

The Arc PPR: How have you become more of an advocate for your child since becoming involved with The Arc PPR?

TB: Well, I know what his legal rights are, and I’ve been able to scold people for taking advantage of his rights. I’ve really been able to stand up for Hudson. If people say, “He’s weird,” I explain what he has and that he doesn’t need to change. I explain that the person who made that comment is the one who needs to change.

The Arc PPR: What are the benefits of having a child with autism? How has your story made your family and those around you stronger? Is there anything about this experience that has surprised you?

TB: Before Hudson was diagnosed with autism/Asperger’s, and he was having episodes, we weren’t happy. We weren’t sure why he was that way, and we were walking on eggshells, afraid to say something wrong. Now that we understand his diagnosis, we’re a lot closer as a family. We understand what is causing his emotional outbursts. We’re OK with the outbursts. He’s very sweet and kind when he’s not having an episode. He’s the most loving kid in the world. We’ve learned how to let the emotional outbursts and behavior not bother us or ruin our day. We understand that it’s not going to be forever.

The Arc PPR: What would you want other parents of kiddos with autism to know about The Arc PPR?

TB: I would want other parents to know that there’s hope for the future, especially with the Building for Change campaign. When I first met Hannah, she was an advocate for what was currently going on with our family. Hearing about Building for Change, I’m now more relieved because I was scared for Hudson’s future. I didn’t think he would have a successful future, because I didn’t think he’d be able to hold down a job or make friends as adults. After I learned about Building for Change and the resources that will be offered, I’m way more hopeful for him.

The Arc PPR: Is there anything else that you would like to add?

TB: The community can benefit from individuals with autism and/or Asperger’s. And the more times you interact with people on the spectrum, the more they will realize that there are kind people in the world. And, the more you interact with people on the spectrum, the kinder your world will be.