Someone told me my son didn’t have Autism, and it made me second guess myself as a parent for years.
We were in the middle of a crisis at school, Mason was 8 years old and we have just received the official diagnosis for the first time. We waited for a long time to diagnose Mason because I didn’t believe in a label just for the sake of a label. Our treatment and support for Mason was driven by his unique needs so the label, didn’t matter. Except it did… to me. In the back of my head I frequently blamed myself for all this behavior. I frequently second guessed how good of a parent I was despite KNOWING in my gut, this wasn’t just a parenting issue. I pushed hard for Autism testing and because Mason is considered “high functioning” no one at school would listen, they didn’t think it was Autism.
When we decided to move forward with the official diagnosis, I made sure to lay it all out on the table. I was clear with the outside psychologist that I didn’t think this was a kid behaving badly, but that if it was, I was committed to doing better. The day of our diagnosis, the doctor called and the first thing he said was, “there is a reason Mason doesn’t appear to have Autism to others, it is clear how hard you have worked to help him. Typically kids who are diagnosed later, have much more severe deficits. You’ve done a good job.” I hung up the phone and I cried. I cried because hearing the official diagnosis frankly sucks even when you know what is coming, but I cried because this wasn’t a made up thing in my head. This wasn’t bad parenting and it wasn’t my kid behaving badly by choice, there was a reason he needed so much support to get through a day. As crazy as it might sound, I was relieved. I was sad of course, but it wasn’t a surprise for me.
A few weeks later, we attended Masons 3 year review meeting and brought with us the new diagnosis’s. I was sure that once the team saw the evaluation results, once they read the scores, once they heard it from someone else’s mouth that this wasn’t just a behavior issue, that it would change everything. Except it didn’t. I sat in that meeting and the special education liaison told me the team didn’t agree with Masons diagnosis. They went on to tell me they were expecting a conduct disorder diagnosis or something similar, but they don’t think he has Autism. And just like that, all my negative self talk, all that self doubt came flooding back in. Maybe the doctor was wrong, this had to be my fault.
For years, I’d see Mason struggle and I’d think, there it is, there is the Autism. I’d wonder how people couldn’t see the constant sensory fidgeting, the struggle to see others perspective, the inability to hold a conversation. Then we’d go through a period of months when things were “easy” and I’d think, maybe this is me, maybe I’m making this up, I don’t see the Autism. I’d feel like a crappy mom, I’d feel like this was all my fault.
Last summer we went on our first family vacation and I was TERRIFIED. Change in routine, new place, new people, no wifi (seriously this was a huge worry for me!) and surrounded by people who I wasn’t sure really “got” it when it came to Mason. But, it was like a dream. He tried new scary things, he was flexible with the schedule, he didn’t complain once about wifi. I mean, this kid when tubing and jet skiing and jumped off a small cliff into the lake. This is a kid who didn’t even put his face in the water until he was 8. I was blown away and SO proud of him. I spent that whole trip convinced he was misdiagnosed. Until we go home and everything blew up. He very quickly unraveled from that vacation high and I thought, “oh hey Autism, there you are.” I hadn’t considered how hard he was working to hold it all in for that vacation.
I spent that whole trip convinced he was misdiagnosed. Until we go home and everything blew up. He very quickly unraveled from that vacation high and I thought, “oh hey Autism, there you are.” I hadn’t considered how hard he was working to hold it all in for that vacation.
The self doubt is a constant battle for me as a parent, and only gets amplified as a special needs parent. Am I doing enough? Am I giving enough? Should I try a new therapy? Is there something wrong with me? Am I to blame?
Last week we had Masons 3 year evaluation for his IEP at school, and once again I was terrified. Mason has been doing AMAZING. The progress he has made is amazing and I was afraid the team would only see the ADHD and Anxiety and not the Autism. I was afraid that in his first year in middle school, in the middle of a worldwide pandemic, I would have to fight for him to be eligible for IEP services. I was prepared with my parent rights, I know the law, I was prepared for a battle.
Except, the team didn’t see ADHD, they didn’t think the Anxiety was affecting his school in a big way, they saw Autism. This team who only sees him virtually, in an environment where he is getting straight A’s…. saw Autism.
The special education liaison was the same person who told me years before that my child didn’t have Autism. The same person who bullied me at the IEP table. We have since repaired our relationship and I consider that person an asset on Masons team. This person 3 years later, see’s the Autism. And as silly as this is, I felt validated in my battle for Mason all those years ago.
I know my child better than anyone else. I am an expert in my child. You know your child best. You are the ONLY expert on your child at the IEP table. You may never get the validation that I had, but keep advocating. Keep asking questions, pushing for more and not settling for the status quo offered to you.
Your child is NOT their diagnosis. Their unique needs dictate the services and support they need. Not the diagnosis, not the district, not a freaking pandemic. 3 years ago, I was bullied into a decision I didn’t agree with, I was an emotional mess at the IEP table, I was NOT my child’s best advocate because I didn’t trust what I knew about my child. But I still pushed for him, I still made sure he had what he needed to succeed. I didn’t know if it was enough, but I never gave up on him.
For all of you who are second guessing yourself, second guessing your parenting because bad behavior must be your fault, listen closely…
If this was a parenting issue, you would have fixed it by now.
You found this page because you were on the hunt for more support. You are on a constant google search looking for help because you are a good mom. Your child needs all this support, all these services at school and beyond because they need them. Other peoples opinions on your parenting have zero reflection on your ability to be a good mom.
Good moms are worried about being better moms.
Don’t forget that.
Need 1:1 support in a meeting or beyond? Head over to https://calendly.com/nicoleschlechteradvocacy to schedule a free consultation.
In the trenches with you,