You are waiting.
That “other shoe” has been hanging in the air for a while. Maybe years. And today it’s dropping.
You’ve known. You knew something was a little different. A little bit off. Not quite the same as the siblings, or the other kids in the classroom or on the playground.
You know. But are you ready to hear it?
Maybe you are here because a stranger approached you in the grocery store while you struggled to keep a tantruming kindergartner from breaking the glass pickle jars and told you she understood because her son was Autistic too.
Maybe a pediatrician gave you a referral.
Maybe a teacher gently suggested that you might want to consider an evaluation.
It doesn’t matter how you got here. It only matters that you are here.
You feel like you’ve been sent to the principal’s office (and maybe you literally have), but now there is also a psychologist, and who is that?
And you take a breath because you know what is coming…the words that will change your lives forever, yours and his.
But will they?
If after this meeting you walk away, and your child has a new label and some papers have been signed, really, what will be any different?
You will still go home and make dinner and do the bedtime routine.
Yet, the word hangs big and scary over you. He will be one of “those” kids. You will say it out loud.
Psst…He has always been one of those kids. That is what brought you here. This? This is just a step along the way. This is how you get support.
It is okay. She will be exactly the same child after the papers are signed as she was before you signed them.
“Disorder” is a scary word. Your child is not a scary child.
Different than you anticipated, maybe. Frustrating, probably. Lovable, definitely.
Tell me about your child. Does she love to build with Lincoln Logs or dance in the kitchen? Would he rather watch The Weather Channel than Disney Junior? Those things will stay the same, I promise. Having a label will not erase them.
I can tell you about mine.
My son loves airplanes. He can tell you anything you could ever want to know about the Blue Angels. He knows the pilots names and the models that they fly and where the airshows will be this year. He can identify certain music notes by ear, and he gets annoyed with me when I don’t know if that suspenseful background noise in Harry Potter right when Voldemort is introduced is a “g” or not. But he needs extra help in school. He cannot read above a first grade level, although chronologically he could be entering the fourth. If you ask him a question about what he did in school last week, his answer will not have anything to do with what you asked. You just might learn something new about the engine on an A-10, though. Nevermind that you asked about gym class.
I understand. I do. I cried after I signed those papers. It was one of the hardest things I ever had to do, to finally sign that line that labeled my son “neurologically impaired/mentally retarded.” That is only one of my son’s labels. He has that one because some IQ test results came back particularly low and his performance has been consistently poor over his entire school career.
He has others too, but that is the label that qualifies him for services in our state at the moment. He has had at least five different labels on his paperwork at one time or another. But he continues to be the same child, the one who knows more than I do about music, airplanes, Star Wars, and golf.
How could I do that? How could I sign knowing he was the child who could tell me anything and everything about any airplane? I knew I had to. Because it wasn’t about me. Because I said “ok” my son got his IEP back and became eligible for an alternative classroom with smaller sizes, more teachers, and other benefits. He is now being taught at his instructional level in smaller groups or one-on-one, rather than being passed through each grade despite receiving nothing higher than a 20% on each test, just because “his ability matches his performance.” He has speech and occupational therapy more often because they happen in his new classroom, in addition to the times he gets pulled out.
He got the help he needed.
I do not deny that he needs it. He does need to be able to read, and do simple math, and button his pants, and tie his shoes if he is to function in society, and he needs help and professional intervention to do all of those things.
I cried alone in a minivan.
And then I went home to the same “neurologically impaired” child who is nine and does not know what two plus two equals. He was building an F-18 with LEGOs, after he researched the wingspan by asking Siri on the iPad.
Today you will go to a meeting.
And you might hear a word that scares you.
But I promise that word is just a word.
It will not change your child.
It might even get you both some help.
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Sometimes giving it a name gives you a starting point. Like, now we can move forward. Now we can get the help he (we) needs. Now we can google a named diagnosis and find other moms and dads going through the same thing, and find out what works for them and maybe will work for you. Giving it a name can be a godsend, because suddenly, you don’t feel so alone when you know there are others out there going through the same thing. I don’t know why it makes it easier to bare (bear?) but for some reason, it does. It gives you a tribe. Maybe not the tribe you imagined you would be in, but a tribe nonetheless. It doesn’t change who he is, it just changes how you get the help and understanding you need. Big hugs for you all.