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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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