The diagnostic process for autism can be a long, arduous process for both you and your child. Very rarely do parents decide to pursue a diagnosis “just because”. But sometimes, even though you’ve gone through this extremely thorough process, you can start doubting the diagnosis.
My children are wonderful. They’re sweet, funny, creative, affectionate, and intelligent. Most of the time, I can convince myself they’re typical and surely everybody’s kids are like mine, even though I know that most 4-year-olds speak in complete sentences and the twins can barely give me single-word responses. But with X-man in particular, it’s easy to forget that he carries the same diagnosis as his brothers. I get lulled into this false sense of security and can even start wondering if maybe, just maybe, we were just seeing things and jumping to conclusions. I’ll give you an example.
Shark!!!
Today in the waiting room at therapy, waiting for Speedy and Crash to finish their speech therapy, he actually played with some of the other kids. Some of them had a fun little game going where one person was the shark chasing the other ones around. They took turns without incident. They pretended things and came up with simple strategies to outwit whoever was the shark. It was the sort of thing you’d see if you got a group of typical kids together. It was awesome, really. And I saw him acting like a typical kid, having typical kid interactions, and I thought, maybe we were wrong. Maybe the people administering his ADOS just saw him on a bad day and drew the wrong conclusions. Maybe, in our attempt at “early intervention,” we saw things that weren’t there so we could try to get a jump on a non-existent situation.
When it all crashes down
Then tonight happened. All that socializing at therapy combined with his own strenuous OT session wore him out, and he got overtired. Bedtime can be a struggle on a good day, but when X-man is overtired, you’d best hunker down and prepare for war. Cleaning up Legos turned into a tragedy of epic proportions. That led to a toothbrushing misfire, and it all snowballed until I found myself attempting to restrain a punching, kicking, and primally screaming 5-year old on his bedroom floor. I was kicked in the stomach, kneed in the jaw, and jammed two fingers on my right hand. In layman’s terms, he Hulked out on me.
It is universally acknowledged that a kid in an autistic meltdown has superhuman strength and I’ve seen that play out with all three of my kids. And it’s entirely dependent on the child as to how you handle it. Crash and Speedy have meltdowns more often than X-man, due in large part to their inability to communicate their wants and needs, and I totally get that. X-man usually has some sort of stimulus, either an impending illness, being overtired or some such thing. With Crash and Speedy, we’ve learned to just stay nearby, not give any undue attention to the meltdown, and for Pete’s sake, stay calm. But with X-man, every meltdown is a little different and what calmed him last time more than likely won’t do it again. He’s not as strong as Crash during a meltdown, but he’s somehow even less in control which makes him more challenging physically. All in all, I got a brutal reminder that yes, X-man’s diagnosis is very real. I’m hoping with maturity, experience, and all the interventions we’re attempting that one day he’ll be able to manage himself without the meltdown, and it’s a very good possibility that he will. But in the meantime, I try to be thankful for these reminders that we’re doing what we’re doing with good reason. My gut didn’t lie to me, and neither did the evaluation that gave us the diagnosis.
Stop doubt in its tracks
If you have a kiddo who appears to be neurotypical most of the time, it can be hard not to doubt the diagnosis. Some people, even family, may tell you that they don’t “look” autistic (whatever that means. Can someone explain that one to me?), or that they just need more discipline or maturity, and next thing you know, you’re questioning yourself. Here are three things I always tell myself when I start to doubt if we’ve done the right thing.
- Stop! Doubting your decisions is just spinning your wheels. My dad always says, “You’ve made the decision, and that makes it the right one.” I think what he means is that once you’ve made the decision, you can’t go back and un-make it. Whether or not it was the right one or the wrong one means absolutely nothing in the present. Always stand by your decisions.
- Trust your gut. Mama gut is a real thing. You asked for the evaluation because, at some point, you had a feeling. It may have been through your own observations, or because a teacher, friend, or therapist made the recommendation. Either way, at one point or another, you had a feeling that there might be something working against the status quo. Trust that feeling.
- Pray. Remember, God has a plan. Absolutely nothing about your current situation is a surprise to Him, and He’ll never leave you hanging.
There will be times you doubt your decisions, the diagnosis, your relationships, and your ability to parent these wonderful, complicated people. It’s inevitable that those times will come. But they don’t stay forever, not if you don’t let them. Live in the present, and keep moving forward!
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