Bringing up two children with autism spectrum disorder is challenging, but with the right support system and advocacy, it can be an inspiring experience.
Jessica Wilbur, ABS Kids Regional Recruiting Manager
When my 11-year-old son, Chris, was diagnosed with autism spectrum disorder (ASD) in 2015, I didn’t really know what that meant. Even though it wasn’t that long ago, awareness of autism and ASD wasn’t where it is now. Needless to say, it was stressful, emotional, and scary.
Prior to Chris' official diagnosis, our pediatrician recommended we try speech therapy. I set up an appointment, and after four women spent about 15 minutes with my son, I sat with them in my living room as they discussed all the things he wasn’t but should be doing, and all the things he was doing, but shouldn’t be. They talked as if I wasn’t in the room. I was left in a flood of questions and emotions, and I burst into tears.
Was I a bad mom? Was this my fault? Did I not read to him enough? Did I not play the right games with him?
They did little to comfort me and help me understand what was happening. I just knew that I had to do whatever was needed to help my baby.
ABA therapy & a support system
We put Chris in applied behavior analysis (ABA) therapy after he was diagnosed, and he had speech therapy once a week. I started feeling better about everything and realized none of this was uncommon – his diagnosis, my questions, this journey.
The people that he worked with were amazing! They celebrated the little things and so did my husband Glenn and I. We saw real progress. I eventually decided to open up about my feelings and Chris’ diagnosis on social media and found that many of my friends were going through the same thing. I found a community of moms that understood me. It was an incredible feeling to realize I wasn’t alone. I was also able to support others that were concerned about their own children and wondered “how I knew” about Chris.
We moved to Kalamazoo, Michigan in 2017. We specifically chose this location because of the autism services available. It was the best decision we’ve ever made. In speaking with other parents in different states, I have found that they don’t always get the support they need. Where we live, there is an organization called the Kalamazoo Regional Educational Service Agency (KRESA). In my first meeting with them, I immediately felt heard and supported. They attend all Individualized Education Program (IEP) meetings and are truly an advocate for the child and parents/caregivers. Chris started out in a pre-school program at their facility.
After six months, we had a follow-up meeting. I sat at a table with at least six other individuals from KRESA and our school district. They talked about all his strengths and how great he was doing. They spoke directly to me and asked me questions about what he’s like at home.
In that moment, I knew that I was part of this team. We were all working together to do what was best for Chris. I saw how much this room full of people loved my son as if he were their own. Just like the very first meeting, I cried – but this time they were happy tears.
I really started to understand what it all meant, and I knew that I wasn’t alone in helping him become the best version of himself.
Diagnosing Alex & finding a school
In 2018, my 7-year-old son, Alex, was also diagnosed with ASD. I was better prepared the second time around. But, as I like to say, if you’ve met one person with ASD, you’ve met one person with ASD. They call it a spectrum for reason.
There are such a wide variety of sensory sensitivities and triggers. My two boys couldn’t be more different. This is one of main reasons I love where we live. They don’t try to make either of them fit in box. They put them into environments where they can thrive.
During our IEP meetings, the goal is to get the children into the least restrictive environment. They begin at WoodsEdge Learning Center, a school specifically for children with ASD and other cognitive and physical impairments. The next stage is WoodsEdge off-campus, with classrooms in a typical school where students can get additional support in a smaller class size while slowly being introduced to the general education environment. The ultimate goal is having students in a classroom with minimum support. They can also be in programs year-round if needed.
Chris attended WoodsEdge when he first became school age. After six months, he moved to the off-campus environment. The IEP is required to support the child (and family) in all aspects, so because the off-campus classroom is outside of our school district, the IEP provided a bus to take him to school. After almost five years, he moved to our district after this last Thanksgiving.
It was a remarkable milestone, because if I’m honest, I didn’t think it would ever happen. He is still mostly non-verbal. He doesn’t understand social cues and gets frustrated easily. I sat in disbelief in his IEP in early November 2023 as his teacher said that he had nothing left to offer Chris and he was ready to move on. In true form, I cried. I was so proud of him. Several others in the meeting also teared up as they were truly going to miss working with my son. The team members from our school district expressed how excited they were to welcome him and that they knew he would fit right in.
He has been in his new school for just over four months. He has been making friends and his teacher has said several times that he’s a wonderful addition to their class. All the staff in the building know him, and I know he will continue to grow and thrive there.
Alex started in the least restrictive environment since he didn’t need quite as much support. In our area they call the “special education” classrooms Resource Rooms. He does spend some time there but is in his general education classroom about 90% of the time.
He has had some struggles. At first glance, you may not realize that Alex has ASD. He is very verbal, and his academic scores are off the charts. He can identify every country on a map with no labels. He knows the first 100 digits of Pi. He was doing multiplication tables at three. But he is very ridged in his thinking. He expects certain responses when asking questions or in general conversation. If he doesn’t get these responses, he becomes agitated and screams or cries, or both. But we are working on it, and his school has been incredibly supportive.
Be your own advocate
In the middle of writing this, I had an IEP for Alex. It solidified everything I have written. They were clear and concise about Alex’s strengths and where he could improve. They continually asked if I had questions or input. I really feel like I am a part of the process, and we are using teamwork to do what’s best for him.
I wish this was the story that I heard from other parents. Unfortunately, it’s not. I have heard too many times that kids are not supported by the system – school or otherwise. They are seen as a problem and forced to go somewhere else or find other solutions.
I currently work at ABS Kids in recruiting. It has been (and still is) incredibly rewarding to work for an organization that helps kids that are just like mine. What I really love about working here is the people not only value my work experience, but my personal experience, too. When I speak from a parent’s perspective in meetings, it’s appreciated. And when they ask me to share my experiences, like with this blog, it makes me proud to be a part of the ABS Kids family.
I hope there is a day when all children receive the care that mine do. A day when every city, state, and country see these children as the wonderful, talented, and special people they are. A day when we change the world to make room for them instead of trying to change them to fit into ours.
Until the day comes, this is my advice: fight for your children.
There are so many organizations out there that will help you. Search the internet and social media, you’ll find them.
Don’t let someone tell you that your child isn’t worth all the same privileges as any other child. There is help available to navigate ABA services. There is help to deal with schools and IEPs. There are parent groups when you just need to talk to someone that understands.
And if you can’t find them, talk to me. I’ll listen.