If I could count the times, I have heard this. Now, in the beginning, it made me second-guess myself. Especially because my Middle Little looked nothing like my Big Little.
I think back to the first time I embraced his diagnosis. We were at a family function and had a meltdown that lasted over an hour. Up until this time, I had been parenting middle Little solely based on his unique needs. He was smart, inquisitive, sensitive, and demanding. The running assessment by my immediate family was that he was “pleasant,” not happy, not joyful, just pleasant. So as I sat holding him through his meltdown, I wrapped my brain around his official diagnosis…Autism. As much as I hate labels, I knew I had to look at him through a different lens. I had to acknowledge the label mattered. Because it did. I needed an answer for behavior. I frequently second-guessed whether was I doing the right things despite KNOWING in my gut this was the best way. I had to remind people that he is diagnosed with Autism regardless of how “high functioning” because the rest of the world was not listening.
When I decided to embrace the official diagnosis, I laid it all out on the table. I was clear with the non-school-based psychologist that I didn’t think he was behaving badly, but I was stuck, and I was committed to doing better. I remember the day of our diagnosis, the first thing the doctor said was, “there is a reason Middle Little 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 left the office and 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. I cried because now there are two (yes, Big Little had already had a diagnosis). 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, I attended Middle Littles’s first IEP meeting and brought the new diagnosis. I was sure that once the team saw the evaluation results, once they read the scores, and once they heard it from someone else’s mouth that this wasn’t just a behavior issue, 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 Middle Little’s diagnosis. Even the teacher agreed. They went on to tell me they were expecting a conduct disorder diagnosis or discipline issue, 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, or maybe it was a discipline issue.
All this time, I’d watch Middle Little struggle and think, there it is, there is the thing… there is the Autism. I’d wonder how people couldn’t see the constant sensory fidgeting, the struggle to see others’ perspectives, the inability to hold a conversation or the intense focus on own interests. Then I would get 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 just need to be firmer, after all, I am Grandma and have a soft spot for the Littles.
That summer, we went on our first family vacation and visited family. 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 Middle Little. But it was like a dream. He tried new scary things. He was flexible with the schedule, and he didn’t complain once. I was blown away and SO proud of him. I spent that whole trip convinced he was misdiagnosed. Until the blow-up at my cousin’s house, where we sat for over an hour. Then we got home, and everything unraveled very quickly, and I thought, “oh hey, Autism, there you are.” Which made me think of all the frontloading (on another blog post) I had done and how hard he was working to hold it all in for that vacation.
Around that time, self-doubt was a constant battle for me as a caregiver/parent and is 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?
This November, we had Middle Little’s annual review for his IEP at school, and once again, I was set secretly set for battle (yes, I walk into a meeting just like you). Middle Little has been doing AMAZING. The progress he has made is fantastic. I was afraid the team would only see the ADHD and Anxiety and not the Autism. I was prepared with my parent’s rights, I know the law, and I was prepared for a battle. Except, the team and new Special Education liaison didn’t see ADHD. They understood that Anxiety was affecting his school in a big way, but they saw Autism. They understood that even though he was getting straight A’s…. they saw Autism.
This is the team who told me a few years before that my child didn’t have Autism. Most of these are the same people who tried to bully me at the IEP table. Since those first meetings, we have begun to repair the relationship and are much more collaborative in the process, but to be totally honest, there are still bumps in the road at times for various reasons. However, I know Middle Little better than anyone else. I am the expert, and I will ALWAYS move in a fashion that is in his best interest.
You know your child best. You are the ONLY expert on your child at the IEP table. You may never get the validation, but keep advocating. Keep asking questions, pushing for more, and not settling for the status quo offered to you.
Your child is NOT only their diagnosis. Their unique needs dictate the services and support they need. Not the diagnosis, not the district, not a freaking pandemic. In the beginning, I was bullied into a decision I disagreed with, I was an emotional mess at the IEP table, and I was NOT my child’s best advocate because I didn’t trust what I knew about Middle Little. 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 whatever the struggle is, be it behavior, reading, writing, who know thinking it 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 caregiver, mom/dad. Your child needs all the support and services at school and beyond because they need them. Other peoples opinions on your parenting have zero reflection on your ability to be good at the job.
Good caregivers/parents are always worried about being better.
Don’t forget that.
Need 1:1 support in a meeting or beyond, I provide free consultations.
I’m in it with you!
Latina Nickelson aka Ms. T.