…and then my heart stopped. When Your Child with Down syndrome Bolts

Trouble with a Capital "M"

I had just finished changing Mack’s diaper and I was nursing him.

Micah and Moxie had been watching a show on Netflix. There was a…stillness in the air. Since I am deaf, it’s the stillness that I rely on with Moxie – not the sounds per se. It’s the vibration in the air, and trust me, with Moxie, there is a lot of vibration in the air!

So, I was sitting on the ground, holding Mack and felt that stillness. I asked Micah to go and check and see where she was. He got up, walked around the apartment, couldn’t see her, came back, eager to resume his show, “no Moxie”.


The air was really still. So I stopped nursing Mack and got up, walked around, couldn’t see her. I wasn’t terribly alarmed. The back door was closed, after all. To be on the safe side, I still went outside to the yard, walked all over, calling and checking. My biggest concern was that she had fallen asleep somewhere (she hadn’t had a nap and I knew she was exhausted).

No Moxie.

I went back upstairs, did another sweep. I was really nervous now.

Where had she gone? WHERE?

I went back to the room and was looking under the loft bed (was she asleep down there?), my palms were sweating by then, I couldn’t see her and I had no idea – none – where she might be – it was like she disappeared in thin air.

Micah came to me, ‘Mommy, someone is knocking at the door.”

Oh my God.

I went to the door. At the base of the stairs were two women that seemed familiar. I think I’ve seen them walking around our block. One of them was holding Moxie. I rushed down.

One of the ladies said that they saw Moxie TRYING TO CROSS THE STREET. 


She said she had collected her at the curb corner and they had been trying to find who she belonged to, where she lived, when our neighbour’s “friend” saw her and told her where we lived.


I thought I was going to fall over right then and the hysterics were bubbling up.

And HOW, I wondered, HOW DID SHE GET OUT???

This was a mystery until long after I had shut the door after thanking the kind women. Long after I had collapsed on the floor in big huge ugly crying. Long after my shaking had somewhat subsided.

Because Moxie tried to make a break for it again – and I saw how she did it. She took Micah’s step stool that he uses on his chair like a booster seat. She took it and placed it at the back door and slid the lock open and opened the door handle.

Frankly, I don’t give a shit how great her fine motor skills are or how clever this child is. Because when I think of any or all of this, I start shaking  and the tears flood my eyes and I think my heart has stopped again.

photo 2

This is the thing: I had just read my friend’s blog post on her son doing something very similar! It wasn’t that I didn’t think it could happen to us – I knew it could – it’s that I didn’t think Moxie would figure out how to get out if the door was locked.

So far, this is hands-down the scariest thing I have ever experienced that seems to relate directly to Down syndrome. This bolting, fearlessness thing. For those of you that are not familiar with this, it seems like a lot of kids with that extra chromosome have a lack of fear as well as a propensity to just…go. Bolt. Lead with their desire first .

Moxie definitely has this and I spent the rest of last night thinking through what we could do about it, in light of my deafness, in light of the Pan Am, in light of the fact that we still live on the second floor and will for a few more months.

I bought over $100 worth of baby gates. They are going to effectively seal off one room, the room in which she will need to play in when I am nursing/feeding Mack. We can bring them with us, along with the longer retractable yard gates. She will wear squeeky shoes AT ALL TIMES (- I can hear the squeek). I think a high pitched bell attached to her by way of a bracelet might also be good.

All windows will have stops (I bought those too); we are looking for a retractable tension-type of window guard. Know of any? Something we can put up to make windows safer (I realize now that she can pull that stool up to any window and climb out – and fall down).

Please. If you know of anything, any way to help us through this bolting, running thing, please tell me.

I can’t have that happen again.

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is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).
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  • Oh how awful! I had a similar “wake-up” call with Josh. One morning the neighbors woke me up knocking on the door. The child across the walk said “Josh is in our basement watching TV and won’t leave.” The flood of emotions continued to hit me for hours. Even though he wasn’t in any danger – that time – I kept picturing the worst. It never occurred to me that he’d figure a way out of a locked house. Josh liked to walk away from daycare settings and school too. He didn’t want to participate in gym class activities and just left the field. He was almost over the fence and on to the highway before they caught him… They used to make things that fit over the door knob that kept kids from being able to turn them. I had them on everything, including closets! Good luck!

    • Stephanie, I actually teared up just now, reading that – HOW SCARY!!! Oh man.
      And that’s a great idea, those babyproof cover things. I’ll get some today.
      Thank you!

  • Ohhh. I have so been there, and I understand those feelings all too well. Except for me it also includes extreme mortification and feeling like the worst mother ever. Even though I know how common it is with our kids, it is still hard because I always feel like if I had just been watching closer or been more careful or whatever, it wouldn’t have happened. We mostly have the problem solved at home (each door has a loud alarm that sounds when it is opened) but we always deal with this at family and friend’s houses. It doesn’t stop the wandering, but having Vika wear an i.d. Bracelet does provide some peace of mind because at least I know if she is lost, whoever finds her will know how to contact me. I recently learned that regional center will provide medic alert bracelets for this purpose. And when we are away from home, Vika is pretty much always strapped in her stroller. It makes me feel really mean, but I’d still rather be the mom of the kid who’s always in the stroller than the mom of the kid who’s under the car.

    • Janee, I had the feelings of extreme mortification and STILL feel like the worst mother ever. I mean, my place is TINY; I should have been able to keep her in.

      That ID bracelet is a great idea. I want to get one

  • Eon JUST eloped on Friday for the first time from our home! We found him just over a block away near a creek. Our dog was barking at him, keeping him from going in the creek. Terrifying! We, too, have alarms on the doors, but they are so impractical in a large family. We are going to order a gps device for him. Currently looking at amberalertgps.com. Sigh.

  • I just bought a jig to put in a second deadbolt in the door much higher than the first. I had purchased the extra high baby gates and it took no time at all for my girls to start propelling themselves over them. It’s terrifying to think what could happen.

    • I worry about that too with the baby gates. I saw Moxie propel herself over the one that we had before – but I figured that the baby will need it and it’s still a sort of hurdle for her. Not likely to stop her completely but should slow her down.


  • Melanie is just figuring out and getting the strength to open the screen doors. Just yesterday commented that I’ll need to get locks for them. After reading what you went through I realized how much more diligent I need to be about her safety. She also has no fear and completely ignores me when I call her. I believe that things happen for a reason and maybe this lesson happened so you could share with the rest of us.

  • That is so scary! I’m so glad Moxie was returned safely! My daughter doesn’t understand danger either. She doesn’t bolt anymore but she is oblivious to the danger of cars. Parking lots are a nightmare for me. Would you be able to hear door alarms? That might be an option for you or installing deadbolt locks that need keys to be opened. That’s what we did!
    here is an alarm- http://www.amazon.com/s?ie=UTF8&keywords=door%20alarms%20for%20kids&page=1&rh=i%3Aaps%2Ck%3Adoor%20alarms%20for%20kids

    Here are some deadbolts- http://www.amazon.com/s?ie=UTF8&page=1&rh=i%3Aaps%2Ck%3ABest%20Deadbolt%20Locks

  • Oh Meriah,
    I am so sorry! That happened to me once when my youngest was 2. I was getting the older kids dressed for Easter and all of a sudden realized that she was missing from the house. We had to look up and down the road! Luckily we lived out in the country, but unluckily, someone had dug out the ground for a new house! We did find her finally with a neighbor, but I still remember that horrible feeling.
    At school I had quite a few “bolters” . I bought a lock which temporarily attaches to the top of a door. It a allows enough adult fingers through to unlock the door when you want it to but kids can’t get out the door. I then gave it to my daughter and grandson who also lives in a second floor apartment.
    I believe I bought it at Toys “R” Us http://www.toysrus.com/product/index.jsp?productId=3812906

  • We bought many hook-and-eye latched to place high on the doors. All the doors. I’m constantly cruising around like a swimming shark keeping my eye on our 6yo. He tries SO hard to elope, five, six times a day.

  • Does this really have to do with DS or is it just that you did not expect her to be able to do it yet? When my oldest was 4 we were meeting some friends for a picnic and she just BOLTED and ran out of the park — in downtown Boston. We were parking our cars at a time, so there was just one adult with 3 pre-schoolers. He picked up the 3-year-old, and the 5-year-old had to run alongside him as they tried to chase her down. Fortunately she was stopped by a kindly elderly lady before any tragedy happened, but she was 3/4 of the way around the block by then…. So this can pretty much happen with anybody.

    • I think it really does have something to do with Down syndrome. It seems like too many families with a child with Ds have something like that happen for it to just be coincidence.

      It’s hard to describe it, but it’s also different from how my firstborn would wander ahead or something. It’s like a total lack of fear. Not like fearlessness – where you are aware of fear and choose to just not participate in it – like an actual LACK OF fear; where the concept is simply not present. I’m not sure if that makes sense…?

  • My two year old did that too. I was doing the dishes and she simply opened the front door and went for a walk. Thankfully my older daughter followed her and coaxed her back towards the house right about the time I turned the water off and realized how quiet the house was. We bought a door alarm that is soooo loud I am sure you will hear it, especially if you can hear squeekie shoes. It sounds the alarm when the seal is broken between the door and the door frame and you can place it right up near the top of the door, safely away from a toddler even if she is on a stool. It cost somewhere around $12 or so at Ace Hardware and it simply adheres to the door and frame with attached adhesive. It also has an on/off switch for those times when you don’t want to have it go off.

  • We had something similar happen when The Boy was younger, he was a runner. I went out and bought jingle bells for all the doors. It was way less expensive then an alarm system and suited The Boy’s sensory issues (plus I could never open the door when I had those cover things on them!) As a matter of fact, the bells are still on all our doors even though The Boy is 18. Its just become something that’s part of our household. I also had an id braclet for him, its a small peace of mind, but gives a little peace none the less. I’m so glad Moxie is home safe and you are still (somewhat) sane. Remember, while terrifying, its happens to so many parents!

  • Oh how I can relate! It is definitely a down syndrome thing! We had 7 children- none of our other children compared to the determined, stealthy bolting as Bethany did. We used to call her Stealth Beth! I have so many “bolting” stories plus sometimes she would hide without answering when we called her name. We would all stop what we were doing and look for Bethany. You’re right- it’s like there is no concept of fear or danger- or boundaries. We had 5 different ways out of our house, each exit triple locked. We had to get smarter as she figured out how to get past our blockades. I lived in constant fear when visiting my sister who has an outdoor pool or at church where she loved to go from person to person and knew no strangers. BUT- here’s the good news- Bethany is 12 now. I’m not sure when it was, maybe 6 or 7- but one day, it dawned on me that she was asking, telling me when she wanted to go out, I could let her play outside alone!!! Freedom. Somehow we made it past that very scary stage! Hang in there- Freedom is coming. One safety link she and I loved to watch that reinforces safety, boundaries is http://do2learn.com/ I don’t know how many times we watched the song- “I Will Stay in My Yard!” Repetition pays off!! Hugs.

  • When Scarlett was just a few weeks old, I was sick in bed with mastitis. Michael came and laid down with me for a while. The kids were out in the living room watching TV. The doorbell rang. “Who the heck could that be?” we both wondered. Michael went to answer the door and it was a neighbor woman from about 6 houses down, with Finn. He had gotten out the front door, out the front gate, and taken off down the sidewalk – no shoes or shirt, just a pair of shorts like a little ragamuffin. Thank goodness someone saw him and brought him home. For weeks afterwards I couldn’t get the “what if” images out of my head: what if nobody had seen him and he had kept going? what if he hadn’t stayed on the sidewalk but had gone into the street? And on and on. Normally we keep one of those childproof doorknob covers on the inside of the front door for the very purpose of preventing Finn from getting out, because he can open doors. I duct taped that puppy on after that.

    Last weekend, Michael and I were running to the store. We were going to be gone for 10 minutes. Kevin was home, and the girls were out in the front yard with Finn. They’re good about watching him to make sure he doesn’t get out of the gate. We got in the car and went around the block and had to pass our house coming back around, and as we approached, I saw Finn open the gate and take off running. Not on the sidewalk this time. IN THE STREET. It was almost like it was happening in slow motion. I jumped out of the car before Michael even came to a stop, and took off running after Finn. He didn’t make it far, but even now, I can’t get the “what if” images out of my head. The older girls had gone inside, leaving just Lilah watching Finn. I was really upset with them for that, but really, mad at myself because I’m the parent – ultimately, I’m the one responsible.

    But yeah, sometimes it worries me that we’ll never be able to take our eyes off of him.

  • :Hillary Clinton wants to allow KILLING unborn babies with down syndrome. Trump DEFENDS their lives. VOTE TRUMP. HIllary is evil. A sociopath. Clinton is a typical lying scumbag who would smile and pose for a picture with your child with Down Syndrome, and then go into a room and vote to allow doctors to KILL your child with Down Syndrome. Do NOT be fooled by this evil woman. vOTE TRUMP.


    • Oh, get a clue.
      I know it’s probably stupid to respond to you, but Clinton has worked with pwd for YEARS – helping to pass IDEA and more. She’s talking about abortion as a woman’s right. Trump is the one who’s a lying scumbag and I pity you that you can’t see that.

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