bus·y [biz-ee] adjective:
full of or characterized by activity:
I’m starting to get a little paranoid. Well…maybe not paranoid, but at least a bit concerned, about a scenario that’s being repeated over and over and over again involving Nathan.
The first few times I heard someone say it, I didn’t think much about it. After all, Nathan is a boy, unlike Sarah Kate, and isn’t physically disabled, unlike Sarah Kate, so I expected him to be a lot more active than she was at the same age. But it’s gotten to the point now where even people who have two-year-old boys say it. So now I’m uneasy.
Is “busy” just a benign-sounding word for “holy terror”?
This summer, I met a mom of an older boy with Down syndrome. As she watched Nathan do laps around the pool deck, she mentioned to me that her son was labeled a “flight risk” at his school. I’ve come across articles that say, among other things, that kids with Down syndrome tend to be wanderers.
wander [wän-dər] verb:
walk or move in a leisurely, casual, or aimless way:
move slowly away from a fixed point or place:
But “wandering” implies someone who ambles. Someone who moves slowly. By those criteria, Nathan isn’t a wanderer at all.
He’s more like a sprinter.
Sometimes it’s a mad break for open skies when he thinks no one’s paying attention. Sometimes it’s an evasive maneuver because he’s just commandeered something he isn’t supposed to have. Sometimes it’s a scamper through the house or down the driveway, looking over his shoulder, anticipating the chase.
Even when he isn’t running, he’s moving – dragging Sarah Kate’s backpack from the mudroom to the kitchen, playing Pied Piper with one of the dog toys, or bringing me every toy in the basket and piling them all in my lap (then reversing the process).
It’s tempting to blame Down syndrome for the running – it’s troublesome, so it must be a Down syndrome thing, right? Maybe it is, but…maybe it’s not. Maybe it’s an ADHD thing, which would make it more of a Mr. Andi thing. The truth is I have no clue.
I just know that I’m tired. 🙂
Hi Andi
I am a Dad of a 17 year old boy with Down Syndrome. Let me give you some advice: Your son can wander off, especially in a crowd. We lost Brennan twice: at a hotel – he didn’t get off the elevator and went back up with it – my wife and I were all loaded down with stuff for the pool for three kids and didn’t notice until one second later; and once at a crowded NJ boardwalk (we had our eyes off him for one second and he went into a store). We learned to do what we call “herding” – My wife walks in front of him and I walk behind him. If you lose him – he will trust anyone – pretty scary! We also gave him a cell phone now and can call him
Also, make sure you get him swiming lessons as soon as possible – this saved Brennan’s life at age 5 when he wandered off into a neighbor’s swimming pool (they left their gate open) and he was happily swimming around fully clothed. Other parents have shared similar stories and it is truly terrifying. Hope this helps!
Bill McCarthy
Thanks, Bill! I’ve already invested in a “bear backpack” safety harness (although Mr. Andi won’t use it because he thinks it looks ridiculous – are you reading, Mr. Andi?) and we’re already planning swim lessons for next spring or summer. Thankfully, none of our neighbors have a pool, despite where we live, but some friends whose home we visit often are putting one in right now, and of course Sarah Kate is on swim team.
A couple of months ago we were at a shrimp boil and I watched him walk toward a “slip ‘n’ slide” that he’d been playing on earlier. An acquaintance who was with me said, “he’s headed back to the slide” to which I responded, “Nope. As soon as he hits the driveway he’s going to glance back to see if anyone’s watching or following then make a hard right and head for the street.”
He did exactly that.
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Ellie’s a sprinter. We tried the bear backpack harness and she just laid on the floor and cried. I supposed it severved it’s purpose since she didn’t run. We actually use the umbrella stroller a lot just for her sprinting escapades. Indoor playscaoes at fast food restaurants are great because they allow her to burn off energy and they are self contained. I should probably mention that Bear is suspected to have ADHD.
My daughter who has Ds is also a runner (as I call it). Wandering is not an accurate word for her either! We (parents and teachers) have used social stories and time outs with her and it’s gotten much better, but we still can’t take our eyes off of her for a minute. At her school’s meet and greet, the kids were encouraged to go play on the playground. I got her and her 3 year old sister to at least play on the same structure for a little while.
Me: standing in the sun, eyes darting back and forth between kids.
All other parents: socializing with each other in the shade while their kids (there were hundreds of kids–part of the problem) played happily.
Me: notice 3 year old running toward other slide, go after her to herd (our family’s word too!) her back (15 seconds or less). Look for 6 year old. Nowhere to be found. I run all over (dragging 3 year old with me) calling 6 year old’s name, knowing she may or may not ignore my calls. Can’t find her. Request other parental assistance. Now 3 adults looking for her. Find 6 year old by school. She had gone inside, gotten a drink of water from the water fountain, and come back outside. I estimate 3-5 minutes that I didn’t know where she was. It felt like an hour. But she was thirsty and solved the problem. Just without asking first, dangit.
So, she didn’t do anything destructive, she wasn’t playing a game, and, in all fairness, I’ll be 99% of the kids on that playground could have done the same thing and their parents would never have known that the kid had gone anywhere. It matters to our family because she has the history of running and acting completely on impulse (without the “typical” 6-year old common sense of dangers).
I don’t know if it’s ADHD-related. I don’t know that it’s related to Ds. I know it’s dang annoying, but since it’s better than it was a year ago, it’s manageable. And it keeps me alert, which is actually really, really good.
This is just part of our reality. And having seen others’ reality, I’m okay with it, although I’m tired too. However, I figure since I don’t work out, this keeps me from having to buy new jeans every year! 😀
Rachel
I was letting out a huge sigh until I got to your last sentence and you made me laugh out loud! Interesting the way you described the meet and greet – it looks like I’m never going to have the “typical” playground experience that other moms have.
When Sarah Kate was little, she needed help navigating all of the equipment – even at the McDonald’s Playplace – so I was always all up in it with her. I envied those moms who could sit and drink coffee and socialize, because I wanted to be doing the same thing. The photo above where Nathan’s wearing the bear backpack was on a morning this summer that several of my friends and I met at the school playground at the kiddos, and you guessed it – I spent the whole time herding him across the field and track while they chatted and their kids played on the equipment.
My husband and I have joked about getting an Australian shepherd as service dog, to help us herd!
Andi,
As a mother of a 32 month old with Down syndrome I am right there with you. Colton is super “busy” he goes non stop from the time he wakes up till he goes to bed. He does nap for about and 1 1/2 during the day so that is nice LOL. He sounds similar to Nathan, always moving. His sister kindly taught him how to summersault and now thats all he does or spins around and falls down. I let him outside our townhouse complex to play but if I am not watching him he will make a run toward the parking lot, or the neighbors homes. It is a very tiring job, so we spend most of our time inside. When we are out I mostly keep him in the stroller as he doesn’t like to hold hands either. I am going to invest in a backpack harness very soon though so I hope it helps.
My 4 year old without DS is constantly moving, a runner/wanderer. He’s been seen by a neurologist for a tic disorder (associated with ADHD) that he has, and it’s a possibility that he has ADHD. I wouldn’t automatically associate that with DS, because I know a lot of kids with DS who don’t do that. I feel like as our little guy grows and we see how he handles school and involved tasks, we’ll get a better idea where he stands on the ADHD front.
Hey Andi!
Just read your post and wondered if the “flight risk” was Austin? Haha. Couldn’t remember if I told you that or not. But I also wanted to give you some words of encouragement. It will get better!! I will never forget those days of never being able to sit down! Especially when all my friends could. I could never finish a sentence without having to stop and chase Austin. But the good news is that he pretty much has stopped. He is 9 but he’s been good about not running for the past few years. Most things just get better with age. We still struggle with some issues but who doesn’t. Love seeing all your pictures and glad I met you this summer. Take care!
Ha! Yep – he’s the one. 🙂 I would take my own nap during his naps every day, except that’s the only time I can get anything done!
Andi,
I am right there with you. I am completely exhausted from having to chase after Lacey. I am thinking maybe it has something to do with your March Babies and they like that “Spring” feeling. I always hear the same thing about Lacey and people always want to know if she is always that busy and I say “Yes. The only time she slows down is when she sleeps.” It can be challenging and because my other 2 are on a new Soccer teams, I tend to use the jogging stroller to keep her in it to watch the games, but now she has learned how to get out of a 5 point harness strapped stroller. She has been doing the same thing with her car seat. Just like Nathan, Lacey will look to see if you are watching and then run faster just to get away. I figure it’s our life and one day she will slow down a little bit, but then I think do I really want her to slow down. Having been told at birth she would be “slow” seems very laughable now, but she also is a climber and there isn’t anything she will not try to climb. Thankfully we live in the country and she can have plenty of place to walk and walk, but when we go out to family gatherings or other stuff it’s not a picnic. I have to say I really don’t get to visit much because my husband, along with her sisters and I are tag teaming to keep up with her. Let’s just say I don’t get to excited about family gatherings like I use to because it’s alot of work and I just don’t think people get it. Not sure what this bear thing is you are using but I am thinkin’ maybe I need to look into it or just move down my you guys and Lacey and Nathan can wear themselves out chasing after each other. She loves the boys and she loves seeing pictures of Nathan. Not sure how many kisses she gives him when I show her the pictures, but the screen on my phone or computer usually needs cleaned after and then of course she says “more, more, more” when she wants to see more pictures of Nathan.
The bear thing is a stuffed bear “backpack” (it can only loosely be called that because it holds almost nothing) with a leash. I know it’s not cool to say I’ve got my kid on a leash, but it is what it is.
Our youngest son does have DS, ADHD, but has a whopping case of BOY. We used Ti call him the magician. Blink your eyes and he’s gone in a puff of smoke. Oh, the places we have lost him…
Wow so nice to see I am not the only one with fastest kid alive.. blink and you miss them. I too tried the bear backpack and had the same tantrum/sprawl then use my dead weight, low muscle tone/awesome flexibility, super powers to make it super hard for Mom to pick my little self up!
There is a bit of a light at the end of the tunnel though 🙂 My little girl is seven and she is still quite quick, but she has learned what STOP means. She still has her Hurricane Helen moments but they aren’t quite so close to one another, and if I can keep all the bedroom doors locked and and eyeball on the bathrooms and pantry ( her favorite place to climb) then we may avert disaster! I have actually gone whole days without major incident !!(ok… so she was at school 😉 )
To me the hardest thing about it all is learning how to discipline them, you get so caught up in the fact that they are ACTUALLY DOING THAT!!! you forget to pull the discipline card. We have learned though… really sad faces and really mad faces and super happy faces along with the right words eventually get through 🙂
Seeing your little guy has really taken me back to Helen’s first few years… it has been really fun to see him grow up and to hear from other moms who are in the same boat as I am, thank you for sharing 🙂
I remember exactly where I was when first met a child with duel diagnoses of Ds & ADHD. While Ds has a physical cause, ADHD is a behavioral diagnosis.
The ability to focus or obey boundaries is a cognitive skill. Is his mental age consistent with his behavior?
Many parents of children with autism deal with running also. A blogger named rhemashope has some kind of locator bracelet that has been helpful.
what about gymnastics/gymboree/swimming for the little guy?
karate? a positive channel for the energy? It seems like strapping into a stroller or harnessing would make the need to ‘go’ worse/