May 28, 2009 10:19 AM
Down syndrome and wandering
Just noticed that someone landed on MommyLife by googling
How to keep a down syndrome child safe who is a great escape artist?
Interesting because after many years of our boys not wandering, on the day of BenAnna's wedding, we had a neighbor knock at our door with Daniel. We live in the country, where everyone is on at least five acres and only a few houses in sight. Although I'd met this neighbor when we first moved in, I actually don't know exactly where his house is, as it comes off the dirt road with a long driveway.
He'd found Daniel in the horse paddock. Daniel, of course, was dressed in full Clint Eastwood regalia. Though he is currently obsessed with the Lone Ranger, we don't have anything resembling the Lone Ranger, so he settles for a colorful serape and brown hat a la Clint Eastwood.
The neighbor was very concerned. And I understand because I am too. But how to communicate that this wandering thing is such a common problem with children with Down syndrome? In fact, one time when several of ours were wanderers, I researched and started a file to plead my case should CPS show up at my door to whisk our children away from parents judged negligent because we had kids with physical mobility developmentally beyond their ability to think through where they were going, much less safety issues.
Anyway, as I wake up each morning and blog about whatever comes up, I guess this has come up. And I hope some of you will share your tales of woe concerning wandering children and make sure we will always be there for each other to do the research to make our cases.
Yes, we do need to be more vigilant than most parents, but we will definitely be humbled by our inability to be the perfect parent - as in golf, we are playing with a handicap (no pun intended)
One suggestion I have - which I haven't done since we moved as it seemed that wandering was no longer a problem for us - is to make the rounds of the neighbors with your child with Down syndrome in tow - to introduce them, make them comfortable, and let them know the scoop.
Of course, you must talk to your child and in every way possible communicate where the boundaries are which they may not go beyond. Don't take for granted that they will intuit them like non-disabled children. As I said, their physical development and curiosity may be beyond their abstract thinking ability. And most kids with Down syndrome are weak in the boundaries department anyway, thinking everyone is their best friend.
Here is a resource for all of us:
"Which Way Did She Go?"
Wandering in Children with Down Syndrome
by Denise BockwoldtI didn't know I was supposed to worry about this any more than usual. I had read all
the books on Down syndrome for new parents, my pediatrician never said anything about it, nor did the staff at the Down Syndrome Clinic. Yet, in my daughter's five years of life, I have found nothing more stressful for me or more dangerous for her.I'm talking about wandering away. Escaping. Slipping away undetected usually in the direction of something dangerous: a busy street, a large dog, or a parking lot. She has wandered at home, at school, at the store, at church, and at friends' homes. It doesn't matter where we are. I've become attuned to my daughter's movement at every moment of the day. My "Mommy Radar" is on whenever she is awake, even when she is tucked away in a preschool program or classroom. When we go new places I quickly assess the potential for danger for her if she wanders away trying to outwit her before she does me. I am never far from the phone for fear someone will need to call me to tell me she's escaped again.
For a child who is labeled with mental retardation, she is very, very smart.
Read the entire article here.
Article from a great resource/monthly newletter for parents of children with Down syndrome:
Also, check under Barbara's Picks - Child safety - in my left sidebar for locators to see if they might be of help.
Posted in Disabilities, Down syndrome | Permalink
Comments
I have this problem too, with my neuroatypical son. But how do you keep a determined 11 yo in the house? He only wanders when he's distracted or thinking about a "mission". He's not physically challenged in any way - and can fully operate the locks!
In our case, however, it's mostly "not thinking" and daydreaming, so he usually ends up at a friend's house w/o permission. And the sibs help by tattling, LOL!
Posted by: Milehimama | May 28, 2009 1:51 PM
As the mom of a 23-month old DS boy, I found this very helpful - I didn't think about how big an issue it is for Downers. My other 6 kids wandered some, but already Peter (who can walk, run, & climb!) won't hold hands and stay with me when we go places. Now I know to be extra diligent in his early training.
Thanks, Barbara, for writing about this and other DS issues. I look forward to learning more from you.
Posted by: Debbie | May 28, 2009 2:46 PM
I didn't know that this was a big issue for individuals with DS. Now I know what else to expect and be more diligent about as Matthew gets older. He's only 19 months old now. Thanks for this heads up.
Posted by: Ria Haag | May 28, 2009 3:26 PM
Pam Vredevelt's son Nathan was killed this way a few months ago, wandering out of a Portland Trailblazers' game onto a nearby freeway. Very sad.
Posted by: Julana | May 28, 2009 3:55 PM
Oh, Julana, I hadn't heard that, Found the story at Nathan Vredevelt Died Today.
And realizing too, Ria, that those of you with little ones do need the heads up.
I remember when there were no blogs, but parents on message boards would tell stories like the one I heard of city dwellers, where the son got out of the battup, put on a big T-shirt and crossed two street lights to go to a record store.
It is awfully hard to explain to someone that you are not a bad parent when that happens.
And I do remember shortly after Jonny was born a young boy - I think around 8 - was killed after wandering through a break in the chain link fence intended to keep people away from the BART tracks in Oakland.
Thanks Julana, for reminding us that it is a very serious matter. I know Daniel could have scared the horses in the paddock and been injured.
It is truly something we need to be vigilant about.
Posted by: barbara | May 28, 2009 4:40 PM
I don't know if any of you have security alarms in your house, but I know that there are some that can be programed to ding when a door is opened. I know that might not help much in a large family with multiple people coming and going, but it could be useful at night.
I also know there are also bracelets that have a tracking device inside that can be used to quickly find a wondering child. I'm not sure how these would work with a very determined, mechanical child, but they might be a good solution.
Posted by: Lauren | May 28, 2009 6:16 PM
Almost 3 years ago our then 7 yo daughter with DS walked out of the house at 6 p.m. just as my husband was coming in from work. Nobody realized she was really gone until 6:30 (6 kids then and a big house on acreage). At 7 p.m. (after combing our home and land) I called 911 and within an hour we had 30+ officers (even retired and off-duty) combing our land for Vera. I was truly incoherent with fear. During one of the many times I walked through our home looking for her I found one son hiding in our bathroom, holding her picture and sobbing.
One of the officers took our oldest son and went walking up the creek that runs through our property and found her about a half mile away, stuck in thorny vines. I was standing near an officer when his radio said "We have her" and we all took off running for the street to meet the police car. Moments prior they had told us they were readying a helicopter with heat-sensitive radar because the sun was going down. Thinking about it still makes my blood run cold. I feel like I couldn't breathe without that girl in my life.
For months afterward we were on 'High Vera Alert' and really stressed. Thankfully, the many, many, many talks I have had with that girl seem to have made an impression, although this story of Daniel worries me. In the end, though, I can't help but remember that the Lord is always watching over them, and us, and loves them more than we could even begin to love them.
Posted by: Jill S | May 28, 2009 6:36 PM
My son, Kevin, who is almost 7 has PDD-NOS (autism spectrum). In our county here in Georgia, there is a free program called Project Lifesaver. It's provided through our sheriff's office free of charge. The children wear a braclet or anklet that emits a radio frequency unique to that child. It's waterproof and you never remove it. The sheriff's office has the detection equipment. When your child is discovered missing, you call 911 and every possible police person will respond and search. They have the detection equipment and can usually find the child in about 10 min. In addition, since the battery needs to be changed monthly, the sheriffs come to our home. This is awesome, since they get to know my son and my son gets to know that sheriffs are not to be feared. Should he ever get out and be afraid, I think he would feel ok approaching a sheriff. We have had the chance to educate many of the policemen about autism along the way too. We also have locks very high up on our outside doors, set our home alarm on instant and lock him in his room at night to minimize the risk of wandering. Just thought I'd add my 2 cents. Project Lifesaver is a national program--many counties in the country have it. Even Orlando FL--which is great since we go there on vacation often.
Posted by: Sara | May 28, 2009 8:19 PM
My 3 1/2 year old little boy (w/ DS) isn't much of a wanderer right now, but I'm pretty positive that he will be when he gets a little older...so thanks for the post :)
Posted by: Scott | May 29, 2009 1:01 PM
This is one of our biggest worries for our kiddo with DS. He has "escaped" a couple of times and he does NOT respond when you call him. He just runs..... enjoys a good adventure. It is a huge concern for us. I did not ever stop to think that others had this problem as well.
Amy
Posted by: Amy | May 30, 2009 12:52 AM
Today my lil 4 1/2 year old got through my chained door to the backyard were he and the dog took off wandering. I noticed him missing and darted out the door to be met by the police who were very nice but now I'm scared I'm going to loose him to CPS. Since he got out I look like a loser mom who can't keep her kid in the house. I bought an alarm for the doors at home depot so they will go off anytime the doors open but hopefully I'm not to late and I don't lose my lil guy. He's my everything and would be so lost without us.
Posted by: christie | August 27, 2011 12:48 AM
I am a Leo in a small rural town in Ks. My father worked with Ds children and adults and have grown up around these special people! With these kids they have to have structure, same routines, and responsibility! Schedule being a big priority. I have noticed with the individuals I have had encounters with after having there guardians assign them task to do will program there minds that instead of wandering the street at 6 am they have to clean the table, wash dishes, fold laundry. Which allows the parent to hear them wake up and can monitor them! I have many of ideas to protect all kids and adults with special needs! If ur interested let me know!
Posted by: Brandon | October 21, 2011 3:01 PM
