The Part of Evaluations for My Autistic Son that No One Talks About
The first time we had an evaluation for our son was two years ago. The specialist came to our home. I had been waiting on this appointment for a few weeks, and I didn’t know what to expect, but I didn’t think I would feel so down afterwards. It wasn’t the specialist’s fault, we’ve been blessed to have some very pleasant people work with our son. But these evaluations have been hard for me since the very first day.
“What are your concerns?”
They all start the same way. I have to explain over and over again everything that is ‘wrong’ with my son. I quickly began to dread these evaluations and the meetings that would follow them. Even though I know they are necessary, I couldn’t stop the crying either during or after each one. I wondered for the longest time why it was so easy for me to share the milestones my daughter hit and celebrate my kids’ wins, but when it was time to explain what my son needed help with, it broke me. I blamed myself for a while too. I thought maybe if I did XYZ, then maybe it would be different.
I finally realized that it was because I couldn’t control this outcome. I couldn’t do it myself. I couldn’t help him speak more words no matter how hard I tried. I couldn’t fix the problem when he would throw a tantrum and we had no idea what was even wrong. Then the next realization came. He doesn’t need me to ‘fix’ him. My son isn’t broken. What he needs is for his family to support him, pray for him, and get any resources available to him. I am so glad to be out of that phase. Raising kids is hard. It’s even harder when we beat ourselves up over things that probably wasn’t our fault to begin with.
Two years later, and I have sat through at least TWENTY evaluations trying to get my son the necessary services. We still have a long road ahead of us, and I wanted to share a few things that have made this journey a little lighter for our family.
Find a strong community
When we began this journey, I had two friends with kids on the spectrum, and I leaned on them a lot. They were so helpful to answer my questions at any given moment. I also found a support group that I attended once, and it was so helpful to be in the presence of other parents who share in the same struggles. I was able to ask questions and not feel judged. It made me feel like my little family wasn’t on an island alone and that there are many other families going through the same thing.
Our church has also been a huge blessing to my son. We have a Courageous Kids Ministry designed specifically for kids with special needs. I am so thankful that my son has a place just for him.
Utilize the people around you
The evaluations that my husband wouldn’t be able to make due to work were the worst. I had to sit through the meetings alone then recap the entire thing, living through those emotions again. Honestly, I wish I would’ve invited another family member to join in. If you have a family member or friend that you trust that is helping with your child, ask them if they would be able to sit through a meeting with you.
I would share some of my son’s session notes with a friend or his grandparents so they can see a little bit of what his therapist would see. It helped to have the people closest to us get a better understanding of my son’s progress.
Be Resilient
I don’t mean to say this as if it’s so easy. It definitely takes time. But once I shifted my perspective from being sorry to being driven to help my son in any way possible, it made all the difference. The evals are still hard, but I push it to the side and keep in mind this is what’s best for my son. I am his advocate. I have to do the footwork right now. And honestly, that’s our role for all of our kids. To be their spokesperson and get them any resource they need! Don’t give up. In any aspect. If you find that your therapist or center isn’t working out for your child, find a place that will work. There are so many great centers and therapists in Baton Rouge. We have worked with some really good specialists and I can’t thank them all enough for the progress they’ve helped my son reach.
We still have a long road ahead of us. But the good news is we’ve also covered a lot of ground so far too. For moms walking a similar path, just know you are not alone. Find your people. Ask Questions. Give yourself permission to feel all the feels that come with this journey. On the hardest days, just remember; your child is not broken, and neither are you.
