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The One Thing I Would Change About Down Syndrome

The One Thing I Would Change About Down Syndrome

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Down syndrome is not a big deal at all with our family. If you’ve been following this blog at all, you know that already.

Meriah Nichols-9Social stigma or stereotypes and prejudice don’t affect us all that much. Moxie has no health issues. She has difficulty with speaking, but we can all work with it and we don’t have issues communicating with her, nor she with us. She is a beautiful child – smart, funny, creative, personable, friendly.

She is the daughter that I always wanted.

Meriah Nichols-7The only thing that I truly hate about Down syndrome is the bolting – the zero impulse control.

That is, when Moxie wants to go somewhere sometimes, she just takes off. She bolts, runs. She doesn’t think about the consequences, doesn’t seem to hold anything in her head other than her desire to GO.

Meriah Nichols-5It’s terrifying. It messes with my stomach, clenching it into balls of worry, fatigue, fear.

I wrote about this before – after (then-3 year old) Moxie figured out how to unlock the door and slip out to the big street, when strangers found her and figured out where she lived and brought her back. The post is linked here.

I think that while in some ways it’s better because Moxie will reason now, if I catch and call out to her, she will stop or pause at some point. But it’s still so bad that honestly, I don’t want to go out sometimes. It’s just not worth the headache and worry and the running after her and calling and the terror.

I don’t think anyone other than another parent of a child who bolts understands this. 

Sometimes when we are around other people, I can see the quizzical look in their eye as I run after Moxie or yell for her, like, they think I’m over reacting or don’t understand why she doesn’t stop. She doesn’t react or behave like typically developing kids do with this – not even remotely.

This is the one thing that I would change about the components in her extra chromosome if I could. This is the one thing about Down syndrome that I absolutely hate.

It makes me not want to take the kids out. Makes me anxious, tense. It changes so many pieces and details about our life – from the fact that I can’t simply hang out with other adults and trust that she’s going to be like the other kids and stay in the play yard – I know damn well that she can take off and start running across a road where cars drive too fast, or she can run down to any number of areas where she could easily be hurt. She’ll lock herself in bathrooms, open other people’s car doors, play in their car.

YOU NAME IT; she can do it. Or has done it already.

Meriah Nichols-6This isn’t a post with answers. There are devices and systems that I wrote about already (linked here). Some of these will be useful for you reading – especially with younger kids – but they aren’t all that helpful now for us. GPS tracking? Nah. The dogs are better at that out here, and it’s useless when the danger is her crossing a road where people drive too fast. Gates? Nah. Over 84 acres?! Fences, yes, when Mikey can make the time to build them, but that’s only for home – what about all the times when we are out? Strollers? Yes, for sure, but when we are shopping, she can (and has) unbuckled herself from the cart, climbed out and run away. That fast, that fast, you have no idea how fast she is.

So this isn’t a post with answers. It’s just a post about, damn, this is hard. I wish it wasn’t hard. I want this to not be so hard. I want us all to understand Down syndrome better, to know where this is coming from, why it happens with our kids, and I want us to find real solutions for the bolting.

I want to be able to uncurl my stomach from its tenseness and know that my precious girl will be safe.

Meriah Nichols-2

 

 

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Caroline Calabrese

Monday 10th of April 2017

I feel like I could have written your post. My daughter is 9 and people don't believe how quick she is until they have to run after her! Counting down the days till she's 10 - hope that's the 'magic' age. I'm also investigating the impulsiveness as it may relate to ADHD. Trying to find someone (who is covered by my insurance) who can see through the Down Syndrome to see if she has ADHD as well.

simiahryahoocom

Saturday 11th of June 2016

I know the feeling all too well...it's getting better but at times it comes back..he is now 12 ...and then it's total panic time. The sudden bolting and disappearing. No fear of being lost! But my heart beats so fast as he can takw off in a flash of a second in a park, a grocery shop, anywhere! Even at school. Am surprised i haven't had a heart attack by now. Wish we could insert a chip GPS in their body...at least to track.if it's any reassurance it does get better as you can reason with her its wrong. Scolding publishing lightly.etc and let her see it hurts you a lot...keep training her. I have cried my eyes out yelling at Anouch a couple timesheets ..he came to hug me to say sorry. Have your family and friends be supportive and follow your policy and create search teams. We do that at school. All the best! A mom in Kenya

simiahryahoocom

Saturday 11th of June 2016

Oops I meant punishing not publishing..auto correct. Sigh! Let me reiterate it does get better with time. But they must be taught its wrong. Anouch loves Dora so I'd tell him the mean witches could get him..doesn't sound nice to lie but I had to scare him into it!

Theresa Smith

Sunday 5th of June 2016

Hi Meriah, My son who has Ds is almost nine. He doesn't bolt much, but I totally understand your fears and concerns. Our boy is so fast and so lacks judgment and discernment of fear or dangerous situations. I am curious, you mentioned in your bio/intro that you live in Humboldt.... as in California? I was raised on a dairy farm (and had lots of chickens too) outside of Ferndale. Live in the "city" now near Fort Worth, TX. I have a great love for northern California. Just wondering if that is where you live.

Meriah

Monday 6th of June 2016

Hi Theresa! We live on the Lost Coast - Petrolia - so Ferndale's our gateway to the world! How on earth did you wander over to TEXAS?!!!! So nice to meet you.

Soph

Saturday 4th of June 2016

I may be the odd ball parent whose Downs child doesn't bolt. Once in a great while yes she did what a normal toddler does which is follow her own desire to go where she wanted. When I say toddler I don't mean chronological age, but rather the mental age of a toddler. Yes there was a period, or a stage in life that she did this but she out grew it, like any child. She is now 11 and although she is smart enough and big enough to unlock doors and bolt she doesn't. She knows her boundries. When she is allowed outside and when she is not. She seems to have a built in fear that prevents her from going out in the dark, or really venturing out of our yard. I hope this gives u hope for the future. They are capable of learning anything you want them to, if you are patient. It's a slower process at times. My biggest frustration tends to be her independent stubborn nature. Listens selectively. Thinks she is her own boss. Pushes the boundries often, but we stay consistent in letting her know the dos and don'ts. Teen hormones are fun! NOT! Wishing you the best of luck. Best advise I have is to treat your daughter like a normal child. Believe in her ability to do the things she puts her mind to. I've learned that my daughter will not be put in a 'box' of the typical Downs child. Never looked like text book Downs kid. She's a high achiever. We've been very blessed that she is healthy, smart, and physically capable of most things like normal kids. Yes it takes longer to learn and do but she can do everything. ?

Kathryn Beckett

Friday 3rd of June 2016

My daughter with DS was a runner also - I almost lost my mind more than a few times! I remember asking another parent how old their child was before they stopped running. She said age 10 and that's just about exactly when Emily stopped also. It's amazing to see her check for me frequently in the store to make sure I am nearby rather than her taking off! So you have some time to wait but it really does get better!

Meriah

Monday 6th of June 2016

I figured it would get better because I don't see adults with Down syndrome running off! But I'm sure looking forward to it calming down. Age 10, you say?!

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