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“He’s Very High Functioning” and other related Ugggsss

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.

In a fantasy land, they’d live in this

this

In reality, they live in this

(Oh, wait! I can’t show you, because I can’t find my camera because of my own huge mess and that is the point! I need to get my discipline on.)

With some patience, and this is my goal, I’d be content if we could just get it to this

realistic

 

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 to drive me to the brink of insanity 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 toile 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, shxxx, 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.”

“Okay, who am I kidding? This place is a shxxhole.” (Sorry, Margaret, for cussing. )

“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 little piggies 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 muffled duck 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… Aspergers.

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 T.S.. 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 high functioning parents and children thrive on routine, don’t they.

The takeaway for you and me: T.S. 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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15 thoughts on ““He’s Very High Functioning” and other related Ugggsss”

  1. Please! You just described nearly every 10 year old I know, mine included, when you say stubborn, argumentative (had this ‘talk’ just last week with my little lawyer) etc. They’re high functioning all right … firing on all cylinders when driving us nuts. I know how it must have made you feel, though. Been there.

    1. Adelia – Thank you. I don’t see you often, but it’s like when I hear from you or see you I feel a soft landing. I appreciate you so. Andrea

  2. I am sorry that I can be that chipper Sunday school teacher… good thing we call it kids ministry 😉 Love your family and appreciate being able to learn about myself and where I fall short. Usually I wouldn’t read so quickly but my hands just pushed the buttons.

  3. Ha ha ha, Amanda. Like I said in the post, you did nothing wrong. It’s all part of raising a kid with tics. I am more than lucky to have you there. Look back a few posts. You’ll see I rave about my new home. You did NOT fall short. Silly.

  4. When my son is waxing, he is a snotty, rude, obnoxious brat. Sorry to say, it is true. During a particularly troubling time last year, both his teacher and the principal armchair diagnosed him with Asperger’s. I am so thankful for a family doctor who, upon hearing this, rolled her eyes and said “everyone has Asperger’s these days,” but who referred me to a specialist so that we could have something along the lines of definitive proof that he is simply a kid who has a bad attitude when he tics. (And whenever he feels like being snotty, which is far too often, but he was born with a crotchety side — it is what it is.)

    I will be honest. I rarely, if ever, say that my kid has TS. At school, they know. But outside that? If I have to mention it (to the basketball coach in case it comes up on the bench) I say something like “he has a neurological issue which sometimes means he clears his throat or makes similar noises which he has no control over.” And then I feel guilty for this for not helping to expand the horizons of the general public about how TS doesn’t mean random barking or swearing. But the fact is, I have to think about my kid, the individual, and not use him as the poster boy for mild TS.

    1. @ Gwen – You make a really good point. I have a private group where we talk T.S., and many of the moms there don’t ever tell people that their kid has T.S. for the same reasons you do. I hear what you’re saying, and I didn’t even think of not mentioning the word as an option. I hadn’t for a long time. It might be a good solution. I struggle with it, though, because T.S. is NOT a dirty word. It’s a completely misunderstood word that to so many signifies really bad things. And yes, I think it’s a really wise thing not to make our kids poster boys for T.S.. But, here’s my really weird rub: Stink is NOT ostracized for it or feels like a poster boy. It’s ME who still gets insecure. So whose problem is that? You have given me great things to chew on. THANK YOU!!!!!!!!!!!!!!

      1. I hear you, Andrea. It’s not a dirty word and it’s totally misunderstood. Honestly, I educate people every chance I get — in MY world. Co-workers, friends, relatives…they know and they’ve been schooled. And they know and have met my son and seen the reality of what I’ve told them.

        But in HIS world — sports teams, Sunday school, his friends — I kind of feel like he deserves a clean slate where he isn’t “the kid with Tourette’s”. Especially because, 9 times out of 10, they wouldn’t notice anyway. And if they did, he could say “I can’t help it” and that’s the end of it. All kids are noisy and peculiar and weird. Ask any elementary school teacher. Everybody has their thing. My kid’s thing happens to be TS (with a side of mild OCD and anxiety thrown in for good measure). If people hear that label, they have a whole set of preconceived notions that he may never overcome. If they don’t, he’s just another quirky kid — like everybody else.

  5. I don’t spill the beans anymore either. I’ve found that no one notices (unless the tics are really bad) UNLESS I say it. I try not to plant a seed (at least for relative strangers). My friends and family (both on and off line) know. I met a person with MS the other day, who couldn’t walk without support. Didn’t even notice until someome pointed it out. Then I did. alot.

    1. Exactly, Joy. “Plant a seed” is a great descriptive phrase. When you point it out, that is often when people notice it the most.

      1. @ Gwen and Joy – Thank you. Really. I really, truly had not thought of it like this before. But ugggggg… I feel like it’s too late now! I have educated everyone!!!!!!!!!! Well, here’s the good news: I can start now. And it has not affected my kid one bit. But what you say makes total sense. Why tell people who aren’t already invested or are just going to look for it? And the deeper question, which I keep getting back to: Why do I insist on feeling the need to defend it? It can’t just be me, or there wouldn’t be so many letters I get from other moms sobbing or trying to understand this condition. But, for the first time, I do see a difference between understanding MY world (as Gwen put it so brilliantly) and letting it go in HIS world. HE is okay. I struggle. That is MY issue, not HIS. OH MY GOSH… really… big big big epiphany moment here. Thank you both from the bottom of my ticking heart. (And a big thanks to all educators out there who have never judged me. This includes chipper Sunday school teachers at the best church I could ever know. And my kids’ school. Just in case you read here, too. I am beyond, enter Christian-eze, blessed.)

  6. Well to paraphrase your christian-eze, you have a calling. You have helped all of us so much more than you realize. My son doesn’t care about his tics either. But *I* do. That’s why I tell people on a need to know basis. And even that small step, you’ve made possible.

    1. To continue with a theme — Amen, sister!

      I agree with Joy. When I first realized that my son had TS, this blog was like a lighthouse beacon in a sea of fog. I was gobsmacked (because it really came out of nowhere for us) and sad and anxious and scared and probably borderline depressed. And to find a mother with feelings like mine, well, thank God for kindred spirits.
      I absolutely and totally understand all those other sobbing moms who are trying to understand and come to terms with the condition, because not only have I been there, I’m still there. But this is your world, no?

      That said, it is not lost on me that I have the luxury of not telling people simply because my son’s case is “mild.” If circumstances were different, I’m sure it would behoove me to tell everyone.

      1. It’s funny you should say that, Gwen, because I’m kind of agreeing with everything you’re saying. I guess we all had the same reaction when we were “gobsmacked” by this. And thank God for Andrea and this blog. Just hope she realizes it.

  7. So true…why am I so determined on telling everyone about my son’s TS when it’s hardly noticeable….I guess in a way it makes me feel better or more secure. An epiphany moment for me as well….

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