High-functioning? What exactly DOES that mean?!

My overall goal is to make Sundays a day of rest. No offense, God, but I do that for me as much as I do for You. I need to unwind with my favorite people. It’s a day to come home to a fridge full of food that I have already bought, change into fat pants and do whatever the heck we want: Hang with friends, see family, have a few laughs.

Instead, we oversleep. It’s frantic. The kids have barely eaten breakfast. Clothes and books and small plastic toys that have no home are strewn over the bedroom. I so desperately want their living space to reflect their minds: Organized. Creative. Thoughtful.

Ten million thoughts race through my mind:

“Stink is ticking. He can’t have milk with his cereal! That’s dairy! But maybe the noises are just because of the strep issues he’s been having. Or lack of sleep. Oh, hell, it doesn’t matter, he tics! And I have nothing else to feed him, so milk it is!”

“Their room needs a complete overhaul. Yes, new paint, shelves and fancy containers will contain their nonsense and prove to the world how superior I am at mothering.”

“I know! To be a superior mother, instead of buying them exterior goods to cover up mess, why don’t we just spend the day cleaning up so they can develop internal tools!”

“Well, I can’t be that mother today. We have too much to do. Instead, I will just have to practice breathing and remembering that a messy house does not mean I am a bad mom. Instead, we are having real experiences outside the home, and more important.”

“OK, who am I kidding? This place is a … ”

“I know! I will get a part-time job to put toward a lovely room! I can get a maid and have order!”

“But then… really… how realistic is this? I wouldn’t be around for the kids. Why don’t I just finish my book? That will make some money for me!”

“Even better… why don’t I just remember that God loves me for who I am: Imperfect. A bit scattered. But generous and kind (for the most part) to my  lovely children… which leads me back to church once more.”

For a moment, I actually feel better. But then… this happened. Enter: Sunday School.

Stink is going to join the bigger kids this week. The 4th and 5th grade boys look like members of boy bands. Stink is wearing an Elmo shirt and has shaggy hair. He’s happy. He’s adjusted. But he’s ticking. So I do what I always do. I tell the new teacher the drill: “Stink has tics. (Enter part where I seem like an over achieving defensive mom) He’s super smart and has loads of friends, but sometimes he makes sounds like a few throat clears. Don’t worry about it.”

I get interrupted right away. It’s less rude and meant to be more assuring. “No worries,” says the chipper leader. “I already told the other teachers he is super high-functioning.”

What? High-functioning? As if… he’s autistic or something? And that leads me to anger and frustration.

Yes, about a month ago he threw himself on the floor in protest to a boring lesson and not being happy about a toy being taken away.

Yes, he sticks his feet in the sand when things don’t go his way at times. He is argumentative and very rigid and uncompromising with change.

Yes, these are traits of… drum roll please… say it slowly…. High… Functioning… Asperger’s.

And yet, they are also traits of a strong-willed kid. They are signs of someone who is bright. Who knows what he wants. My kid is funny and kind and doesn’t have issues making friends.

Oh, there goes the defense again.

Why do I care if he has or does not have something? Why does a few words from a Sunday school teacher, who was nothing but kind, get me so crazy?

How neurotic am I?

After months of feeling like I was moving ahead… that we had a routine at home and, yes, a clean room, and good communication with the kids and very few tics… everything has gone to the hell.

And yet, isn’t that life? Isn’t that like tics? You have ups…. you have downs. You are good days with perspective… and bad ones with pity parties.

I’m not depressed. I’m just a bit overwhelmed. There’s a fine line between loving your child for who he is… and living in denial. And yet, if my son is content and thriving at school, how is that denial? Isn’t that just a bit of Mama being defensive?

Perhaps I share too much on this blog. Perhaps I’ve done my kid a disservice by being so open about his TS. I mean, if I’m going to throw it out there, I’m going to get the comments.

At the end of the day, or the beginning as the case is, I’m going to have to go with peace. My son is at peace, so must I be.

We do need some more discipline here at home, so I’ll be focusing on getting my house together and getting the kids to contribute more. We need a schedule. We need a routine. We need early bed time. Those parents and children thrive on routine, don’t they.

The takeaway for you and me: TS or not. Special needs or not. As a mom, I need some order. Because with some order, I can focus on my children’s gifts, not what the world or I so desperately want to label them.

How about you? Do you feel overwhelmed or are you in a good space? Let’s talk about this!

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