My Journey With Labels
My son has a ten-page psychological report that contained one word that prohibited us from several opportunities: oppositional. This latest go-round they added two new labels. It’s someone else’s opinion that we pay $1,700 to “evaluate” my child because we can’t apply to the special needs school without it.
I have two words for that tester (and many other professionals in this industry) and they ain’t “Happy Birthday.”
Oh, did I just start this out being snippy? My bad. Let’s get to the beginning of my journey when my son started out with his first set of labels . . .
Profoundly Highly Gifted
I was unaware that having rational conversation filled with high-school words with a four-year-old was not normal. It was MY normal, but alas, I was unaware of just how different he was.
So after a lady was eavesdropping on us, said lady asked more about him and ended up suggesting that “You might want to get him tested, and there’s a school you might want to look into.”
I looked into the school she mentioned, decided to get him tested, and he got right in.
His first label was “Profoundly Highly Gifted.”
I was quite hesitant of so mighty a label for a four-year-old, but it got him into the school for the Highly Gifted and I thought that would be swell.
I felt . . .
With this label, I felt proud and cocky, but mostly I felt even more obligated to make sure I raised him well so that he would hopefully make the best choices and use his intellect in a helpful way for humanity. Profoundly Highly Gifted at four years old was some major pressure for me!
Next up: Assburgers / Asperger’s
Beyond knowing that what I had was a brainsy kid, I didn’t really expect anything more. He was who he was and I didn’t know any different.
But then I was handed a piece of paper at our first therapeutic appointment. I had made this appointment because he made some very scary threats along with other such behaviors that definitely needed to be addressed. I knew I needed help–I just didn’t know how much–and I had absolutely no idea that we were going to get another label this fine day.
I told the people at this office what was going on, what his strengths were, yadda, yadda, and they handed me a sheet of paper with ten items to review to see if Michael had any of these. Then they disappeared with Michael.
Poof.
In less than three minutes, one world was gone and another world opened up. I had moved, but didn’t know I was in the market for new real estate.
I read the ten-point checklist (I didn’t read the title, which would have saved me a jack-ton of misunderstanding later) and checked off. “Yep, yep, oh boy, that too, oh boy. Yes, this is my son . . .”
The tears started then.
I was by myself at this appointment, of course. I listened after the therapist called me into her office and explained that my son had “Assburgers Syndrome.” This is where reading the title would have helped a ton because the “p” is typically not pronounced, so out comes the lazy “B” sounding like Ass Burgers.
And the maddening part in that moment is that everyone who said it was completely on board. I accept a lot of things, but lots of people telling me my son had Ass Burgers Syndrome was blowing my mind.
Gladly, I figured it out quickly and away I went with AsPerger’s Syndrome.
I felt . . .
I felt . . . angry. relieved. angry again. relieved again. furious, resigned, grateful–very grateful I had a label so that others could understood my son. With this label, I didn’t have to explain how my son “might” (pretty sure he would) react to a difficult situation. The entire world was so difficult for him back then and having a name for it helped in every way.
Then I wanted to blame someone! Who did this to him? WHO was to blame for this?!?! I felt all the feels and then some more and then I felt them all again. It was no easy time, but the start of the rest of our lives for sure.
Then came High-Functioning Autism
High-Functioning Autism didn’t seem to hang around for very long. Asperger’s was being taken out of the big book and I think the drug companies diagnosis board used this phrasing instead. I heard through the parent grapevine that they were changing it so that our kids could get services.
Autism Spectrum Disorder followed
I got whiplash because before I knew what was what, I was now raising a kid with ASD. Um, OK.
Where are we now with the labels?
I’d like to offer a loving reminder that this is the EXACT SAME KID the entire time we moved through each of these labels.
He has the same exact reactions, triggers, looks, mannerisms, intellect, etc. But the world around us was changing him to be different things so he could get medical care (we didn’t qualify, but somewhere, someway these labels were hopefully helping other kids).
But now I want to drop every one of these f-ing labels. I want us to describe our children as they really are! Michael is kind, generous, intelligent, loving, creative, talkative, energetic, beautiful, interactive, and on and on the list goes.
I want to throw those “disorder” labels in the garbage and only reminisce about them in old brown fading photographs that are aged with time.
We don’t need them anymore as a family, except when we do. We had to have them in the beginning. Labels are shockingly helpful and necessary at certain times, but then you can let them go.
When we do use the label now, we use it to help get us closer to somewhere safe or necessary or helpful. I try to use them sparingly in describing my son and who he is.
This is Michael and he’s as perfect as he can possibly be. Difficult in the beginning–um, yes. Do I wish the doctor had helped me earlier? You bet your bottom dollar I do.
But he is Michael and Michael is my son and I love that kid more than my heart can feel and more than words can say.
And now I send so much love to you as well. Right where you are, with whatever diagnosis you or your family has, with whatever feelings you’re feeling, with all the gorgeous energy that is you. You are loved and you are absolutely perfect in every way.
Warm, loving smiles to you,
Mica
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