Jun 19 2008
Down syndrome: The “wandering gene”
If you have a child with Down syndrome (no matter what form)over the age of 5, chances are you have experienced that heart dropping moment when you realized that your child was missing.
Almost every single child with Down syndrome (no matter what form) has what parents like to affectionately call the “Wandering Gene”.
Easily distracted and without thought of danger, children with Down syndrome become clever “Houdini” artists escaping quickly without notice.
When Tim was 3 and 4 years old, he was the best of the best in escaping! He would wait till the wee hours of the morning and go off on adventures throughout our neighborhood. The biggest problem with this was our road was adjacent to a busy highway.
My scariest moment was when I was woken at 5am to the sound of banging on my front door. I quickly ran to the door, not thinking of my sleep attire and opened the door to find a woman holding my tiny 3 yr old son in one arm and his toddler car in the other. As she explained that she almost ran over him in the highway, I stared at her with my mouth dropped open, not registering what she was actually saying. I quietly thanked her and she left thinking I was absolutely crazy! After I got my wits about me, the reality of the situation hit me like a ton of bricks! I almost lost my son that day!
When I asked him why he was in the road, he said he was driving to work! Well, of course he was! 
What else would someone be doing driving their car on the highway at 5am?
Thankfully, the lady came back that afternoon (to be sure I wasn’t crazy) and I assured her that I was not crazy and I was a good mom.
We installed a chain lock on our door to keep Tim in, however, the chain has to be actually latched in order for it to work. In this instance, and all the others, Tim’s father had left and failed to wake me to lock the door!
Now, there are inexpensive door alarms available that I would have loved to have had back then! These door alarms can be purchased at most department stores and are easily installed. When the door opens, the alarm goes off. I think this is a “must have” for those with the “wandering gene”!!
Joan Medlen of Disability Solutions has a GREAT newsletter on what to do when your child with Down syndrome has the “wandering gene” I highly recommend this and all the newsletters there.
Not only do you need to put in safety measures to ensure your child does not wander off, you also need to teach them about boundaries and where they can and can not go. This newsletter will help you with that!
We, at IMDSA are also working now to design temporary tattoos for children that are easily put on and taken off so when the child is lost someone will know where and how to return them! We hope to launch those within this next month.
I am sure that most of you reading this have experienced that heart dropping moment at least once when you realized your child was missing. And, most of you probably felt as though somehow this was your fault. In most cases, it is just one of those things that happens! Yes, you do have to watch your children closely, but sometimes, no matter how closely you are watching, they still escape! (Tim did it while I was sleeping and it always happened before 6am!)
Please feel free to leave a comment and tell others about your experience and what you have done to keep your child safe! Together we can help keep children with the “wandering gene” safe!
11 Responses to “Down syndrome: The “wandering gene””
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We bought our son a bracelet at AmericanMedical-ID.com and have his name and our address and phone number on it. It has such a tricky latch that he can never get it off (it takes me and his dad to take it off). So, it doesn’t help him stay with us, but if he ever did get away, we have peace of mind that he would be able to get back to us. (sort of the tatoo idea).
I think this is a very good idea, and unlike the tatoo, the bracelet would always be there!
Thanks for the suggestion!
My children are all regular, but I have a little wanderer too. My 2 year old son. We usually latch the door, but we also have door knob covers that make it hard to turn them for little ones. www.frugalmoms.today.com
This story hit home! When my son was 3 he walked out the back door and down the street in his diaper “looking for Daddy” I was awoken at 715am by the police bring him home and asked if I had been drinking!! One other time I was enjoying the early summer moring on the patio and heard pattering on the roof above me.. I went to the middle of the yard thinking it was a squirral only tio find my son had climbed out the window and was walking around!! We have solved our “Houdini” problem by me getting up when my husband goes to work - no matter what time it is!! they also sell for cheap money little alarms that can screw to the door . has just a switch to turn it on and when the contact is broken it goes off. Another that we have tryed ( good for the older ones) has a key pad that you program a code to and it can not be disarmed with out the code!! Thank you for writing this story .. It makes me feel better knowing that it is not only my child!!
Faith is now 10, I think the wandering peaked around 5. For her it was teaching her to tell me where she was going, and of course my ability to understand what she is saying.
At 4 Faith once escaped the house in the early AM after her brother left the door unsecured when he left. She went across the street and joined some older kids who were outside, they brought her home.
At her age now it is age appropriate for her to go outside by herself. She has finally learned to at least tell me she is going outside. Stores are sometimes still a challange because of all the attractive things to discover!
Hailey has gotten out of the house on me twice. Scared me half to death. Luckly she
just made it to the end of the driveway. I have locks and child proof
door knob covers on all the doors. But she figured out how to pull
them off. So moms beware those can give you a false since of security.
I was in the back of the house and I forgot to lock the door at the
top because I thought I had it cover with the door knob covers. But
my little Houdini pulled it off and she was on her little adventure.
I am so glad I caught her both times. I now have a really nice lock
on the front door and Im always on top of her because I know just how
quick and smart she can be when she wants out. Thank goodness we live
in the back of the neighborhood and there is no traffic back here.
The good lord was with us. In a article I read one time it said it
was a good idea when going on vacation to alert the front desk that
you have a little houdini and were she belongs just incase. Im going
on vacation next week and I will forsure take that advice. lol I cant
wait to hear the other stories.
We have 3 autistic kids that have that “wandering gene” as well!! We have so many horror stories, we could not begin to write about them here! We utilized a chain lock for the longest time, until th oldest learned to unlatch the chain with the broom. THey are all terrified of loud noises, so we very hesitantly bought the noise contact alarm. It has saved them on many occasions, so as scary as it is for them, at least it keeps them safe. We also make sure any time we travel or go ANYWHERE, espcially places like amusement parks or busy areas, we make up little laminated cards That say “My name is ****** . I need help.” I put our names and telephone numbers on it as well. We tuck them in buttoned pockets.
My 10 yr old son w/ Ds also has the wandering gene but one with a mission! He always has somewhere he is headed. One time he left the house while I was getting ready and I assumed he was heading over to Grandma’s (he can walk there through a path in the woods so no major streets) but I took off no shoes and barely had my clothes on (quickly threw something on as I was just getting out of the shower) dialing my phone at the same time to have her meet him on the other side. Ran (and I am old and out of shape) over there and he wasn’t anywhere in between! Ran home and around the perimeter of the house. After about 10 minutes of this I realized the sliding door of my van was open (he had taken my keys to unlock it) and he was sitting in the van (laughing at how funny Mommy looked running around) waiting for me! Oh yeah - and we have the flip latch like in hotels which he immediately figured out how to use after we installed it. We also installed the clear plastic boxes (like you would put over a thermostat in a school, etc.) to try and keep him from opening the garage door. He left school once and tried to walk home (we live just a few houses away) to get a quarter because he couldn’t find his for popcorn day. As you see he is a man on a mission!
My 6 yr old daughter, w/ds, decided to take her 2 yr old sister and her 2 dogs for a walk through the neighborhood at 6:30am on Sunday morning (while Mom, Dad, and big sis were still sleeping). We woke to the doorbell ringing at 7 am. Our neighbor, who lives 5 houses down across the street decided that they should not be playing in the street any longer. I checked their beds to find them empty. Checked ALL of our security locks on ALL doors, and ALL were in place. She took them through the doggy door and was able to reach the latch on the side gate. We thought it was too high for her to reach. You can never be too sure.
When she was 3 yrs old my neighbor from across the street found my daughter in her living room–naked! That was the first time she showed us her ‘Houdini’ skills. It was so embarrassing.
I thought we had all the precautions in place to prevent anything like this from happening ever again.
We have since ordered the Medic-Alert bracelet. It gives us a ‘little’ peace of mind!