The One Thing I Would Change About Down Syndrome

Down syndrome isn't a big deal with us, overall. It's a part of Moxie that we appreciate and love - except for one thing. One.

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

 

 

Meriah
Meriah Nichols is teacher and artist who lives in a yurt off the grid. She is deaf, has 3 kids (one with Down syndrome) and a lot of chickens. She writes about travel, disability, and getting dishes done. She likes her tea Earl Grey and hot.
Meriah

@meriahnichols

#deaf mom, teacher & #disability activist, living in a yurt #offthegrid. 3 kids (1 with #downsyndrome), a camera and a lot of chickens. Never a dull moment
A comprehensive collection of resources for new parents of children with Down syndrome - https://t.co/WfzGfpmWm6 - 2 days ago
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22 Comments

  • Oh this rings,a bell with me! My boy is a bolter….he checks the front door continuously to see if we have left it unlocked!!! The 5% times he has found it unlocked…he’s off… very, very very fast!!

    • I thought we were the only ones going crazy with this! Our boy literally does not rest! On the go constantly. I keep hoping it gets better with age, you just cannot take your eyes off of him because if you do that is his chance and he is gone! We feel so frustrated and helpless!

      • Yep. We took our eyes off of our daughter for a few minutes at a hotel recently and guess what she did? Jumped on an elevator and had fun on a different floor…. 🙁
        I’m yours in solidarity, sister.

        • Oh my that reminds me when I first moved to Nairobi and USAID put us up in this fancy hotel while we looked for a home,.my boy was 6 then and had figured out after a week how to open the heavy room door and disappeared while I showered. I ran out hardly dressed appropriately and began asking every staff and guest where he was as I ran searching his favorite places.. I was going mad when suddenly a cleaner calmly told me: he is there, and pointed to the see-through round elevator. He was sitting in it..naked!!!! (He hates clothes and had no shyness). I joked with the manager later that we now had our first Chippendale DS in Nairobi! Not sure he was thoroughly pleased though he chuckled lightly…

  • We’re looking at some reins for my 7yr daughter with autism as shes grease lightening when she wants to go…we want her to experience the world but wow, sometimes keeping that energy in check is exhausting…reins arent the big answers but what choice do we have, itll hopefully do for a short amount of time when we go out??!

    • I hear you. We actually had a belt/”leash” thing made in Mexico when we were there – the leash thing attaches to a belt at the waist. It’s okay. Not great, but ok, and it works in a pinch. I don’t know what else to use sometimes either.

  • I totally understand! Our son has bolted and it is terrifying! Once when we were traveling and stopped at a gas station I took my girls to use the bathroom and he stayed in the car with my husband. As my husband pumped the gas, our son slipped out of the car and got into an RV that was parked next to us! Luckily he sat in the driver’s seat and my husband spotted him and got him out. The owners were kind and understanding, but it scared us to death that he was able to get away so quickly. He does a lot better now that he’s older. Hang in there. It’s the worst part about Down syndrome for sure!!

    • Oh. My. God. How scary!!!!! My stomach lurches when I think of something like that happening – and them driving away with her in it?!!! Sigh.

  • Thank you for this. My son is a bolter for sure and I thought he was a minority among kids with d.s. Other kids I see seem so chill to me compared to him. I always joke that I dont know hiw he will survive his childhood He is a frustrating mix of speed, agility, and mischief. More than once I have found him hanging over the railing to our open staircase. No need for PT in our house! I didn’t know there were other kids with dangerous mix. It is also frustrated by being so social. He gets angry that he cant communicate so he pushes other kids, especially smaller ones. Part of the thrill for him when he bolts is the chase. He has the opposite reaction to scolding that you want….joy. He is just happy to be interacting with you and the more dramatic, the better. Hence the mischief. Going to a party or zoo or something us to be dreaded. What makes it worse is that the more you try to contain and restrain him the bigger ball of energy you create. I appreciate that you don’t offer solutions because I’ve tried them and we do BPA services but knowing that I’m not alone is comforting. His only 4 so I just pray that he can survive this seemingly never ending phase and grow out of it.

  • YES!!!!!! Our Remington is what we call a runner. He checks the door as s well. Most of the time when we go to the city he has to hold our hand or ride in the cart. 9 years old on the 24th and still can’t be out of our sight. I truly get it!!! We have a care track bracelet through our local seriff department, but it is only a radio tracker if he becomes lost. I want an answer just as bad. Good luck to you all on keepin your sanity.

  • I hear you. Fortunately, my daughter is not as fast as Moxie and she has wandered less as she got older (almost 9 now). Our latest struggle is that she wants to have the run of the neighborhood now – we are on a dead end street – like all of the other kids. Her younger sister, at 6, is ready, so that makes the situation even more complicated. I am in a “dignity of risk” vs. “safety of the helicopter mom” struggle with myself right now. We are compromising with letting her play in the neighbors yard where I can look out the window every few seconds to make sure she is still there. She is happy with this, but I know that if I hear someone walking by that I need to head outside as she may decide to join them on their walk.

  • 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!

    • 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?!

  • 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. ?

  • 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.

    • 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.

  • 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

    • 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!

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