[vc_row][vc_column][vc_message message_box_style=”outline” style=”round” message_box_color=”turquoise”]This is an Open Forum question, in which blog readers ask the COMMUNITY for answers to their problems.
Today’s question is from a mom of a man with Down syndrome.
Names and identities have been changed to preserve privacy[/vc_message][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]Hi. My son Jack is fifteen and has Down Syndrome, and is non verbal.
In many ways, he’s like a very young child, and in others, like a typical teenager.
He is the youngest of my four sons; the others are gone off living their lives.
I’m 62, and disabled since a couple of bouts with cancer, now in remission, but having left lasting and progressive damage. Before that, I was a self-employed systems consultant. So enough about me.
I’m getting desperate.
Jack has had periodic spells where he elopes over the years, they usually occur in the Spring, but this year it seems to be especially difficult for him to stay put.
He has a behavioral therapist who has been working with him on things like safe navigation through the streets and asking permission; the first has taken hold, the latter, not so much.
Since the beginning of May, he’s “escaped” three times, twice with what I consider at least semi-disastrous results; two instances were yesterday. The first disaster resulted in the cops being called when people stopped him; on that occasion I didn’t realize he was gone for at least 45 minutes, and while he took his communication device with him, it did not come back with him and has still not been found.
The second disaster was last evening, after he and I had spent a nice afternoon working in the yard and teaching him how to use the reel mower I bought him so he can safely help with it.
I took a phone call from my son who is scheduled to visit today. Jack was in his room. I did not set the door alarms because we weren’t done outside and I honestly thought he had gotten enough outdoor time that it wouldn’t be an issue.
About an hour later, I saw that he was gone, and almost immediately the phone rang; it was the cops from a community about a fifteen minute walk away. He had taken the time to put on a jacket and grab his wallet, which was a plus and helped them find who he belonged to.
I am getting desperate, because I’m afraid the cops are thinking I’m not providing adequate supervision, but short of keeping him, and me, as prisoners inside our home, I don’t know what to do, and Sam is sly: he knows enough to make sure I’m not watching when he tries the door, and his successful escapes have been when I was busy doing something, like yesterday, and hadn’t buttoned up the house yet.
A house arrest anklet would help find him; it wouldn’t prevent him from leaving.
I haven’t seen proximity alarms that would be impervious to a kid who knows how to use scissors. What I’ve asked for is a perimeter fence, but I got word earlier this week that the funding for something of that magnitude has been discontinued by that agency.
So I turn to you, in hopes that you have some useful suggestions for resources and solutions to help me keep him home and safe. Thank you.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_message icon_fontawesome=”fa fa-gratipay”]
Can you help this mom with some sound advice, please?[/vc_message][/vc_column][/vc_row]
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
I hear you. Our children will always be our children. But you need to take care of yourself too. Have you reached out to Foothills Gateway, or Easter Seals? There is also The ARC. All three are ran by people who care and want to help. You do have options, and help is available. Reaching out is the first step. You got this momma. Love & support from a grand momma raising a special little girl.
My son was only an escaper as a child…I had to be very diligant and fortunitly I had two daughters to help. Sean’s older sisters. He was nonverbal, at the time, and very sneeky!
My only suggestion would be to contact the alzheimer’s society for help. Possibly they can give you some suggestions on how to keep your son from wondering. They probably have this question a lot.
I hope you get the help you need and deserve!
This is a long answer.
As a parent of a disabled person, I know it can be really scary when your child is doing something that involves safety professionals. Not only do you have the problem of how you are perceived as a parent but also the lack of knowledge by safety professionals about people with disabilities sometimes results in harm for the person wandering / eloping.
As a disabled person who grew up disabled, I’m seeing a very determined teenager who knows what he wants and is willing to fight to get it. I admire his clever tenacity.
As a teenager with a disability I felt like I lived in a completely different reality than my nondisabled parents. To them, the world was full of helpful nondisabled teachers and other professionals. To me, the world was full of nondisabled people who did not understand my experiences as a disabled teenager.
I deeply longed for connection to adults with disabilities. How did they navigate the challenges I faced? How did they accomplish the things I wanted to do?
Much of what I will say next I learned from Autistic adults.
Behavior is communication. He is clearly saying that it’s important to him to be able to leave the house and be in the world alone for a bit. He sees nondisabled children have the right to wander the neighborhood at much younger ages than he is now.
Whether he wants to just take a walk, feel like a ‘real’ teenager or is just engaging in a power struggle with you, clearly he wants to continue this wandering/ eloping.
I understand that he is not able to do this alone and without consequences right now. Here are some of my ideas:
* Connect him to someone older who also uses a communication device who can communicate with him disabled person to disabled person.
Parents often perceive nondisabled professionals as the best sources of problem solving, for many of us with disabilities a person with a disability is most often the source of information we trust the most. Also they have faced the same problems as we do so they’ve thought a lot about the solutions and also what did not work for them.
* Connect him to an adult with a disability who successfully navigates their local area, preferably someone who also uses a communication device.
Learning to navigate the world safely has many steps. He’s mastered one of them. An adult with a similar communication system can go out with him and show him how they go around the neighborhood safely.
* An adult with a similar communication system can help him get disabled person-to-disabled person feedback on his skills. Since nondisabled people have a different experience in the world than a disabled person, their advice is often missing critical perspectives. A disabled person often can share their own experiences of learning a new skill but also what they tried and failed.
* Perhaps most importantly a disabled role model starts with the belief that he has the right to be treated in an age appropriate way. That means being able to go out and do basic tasks. The disabled adult will not only approve of his goal but also presume that he is competent to reach it.
For many disabled people, the power struggles stop when our goals are considered valid and we are given tools to accomplish the goal.
I know that this perspective is rare in the parents of disabled people community. Most parents when hearing this kind of advice say “well my child is not capable of that”. I know many disabled people, some of whom use communication boards. They tell me it’s all about being believed and supported in their goals.
I deeply believe that as long as it’s a nondisabled adults vs him, then this situation will remain stuck. Connecting him to disabled adults who had to learn the same skills will provide invaluable resources for both of you.
Dear Corbett O’Toole,
Thank you so much for uplifting this perspective. Another disabled person here, and I was so relieved to see this advice! Another vote from me for connecting this person to other disabled people and supporting them to do teenager-y things. (Which will sometimes, of course, include testing boundaries and asserting independence with parents. by disobeying the rules.)
What about putting bells on all the doors/exits so that at least you could listen for any kind of escape when you have to? For example, if you have to run in real quick or pick-up the phone, you could listen for the bell and then rely on the alarm system at any other time. My brother has Down syndrome, he’s 13, but we have the opposite problem, he never wants to leave his bedroom! He doesn’t want to go outside, or any fun events! Hope this helps! Good luck!
From Maxfield Sparrow: “useful suggestions for resources and solutions to help me keep him home and safe” – I feel like that’s the wrong question because obviously Jack doesn’t WANT to be at home or he wouldn’t go on long walks by himself. The fact that he does it most often in the Springtime (when there’s finally nice weather after being cooped up all winter) and that he does things like making sure to take his phone and wallet with him means that referring to this as “elopement” and “escape” is infantilizing and completely missing the point that Jack is communicating through his behavior.
He doesn’t WANT to stay “home and safe.” He wants to be outside in the glorious, gorgeous world! Regardless of his need for 24/7 support, he doesn’t want to be treated like a piece of property or possession (or a prisoner!) but rather to do what so many of the rest of us take for granted: go for a walk on a lovely day.
I don’t have answers without knowing what sort of “trouble” Jack gets into when he goes out for walks. If it’s just that no one knows where he is and anything could be happening out there in the big, scary world, maybe Jack would agree to wear a tracking device. I hesitate to even suggest it, because they are so misused and abused, but if Jack is okay with people knowing where he is and agrees to wear the device, then it’s not such a panic situation when he goes for a walk: Mom can just head out with a paired device and find him, accompany him on his walk, eventually suggest he come back home.
I knew another mother with a minimally-verbal Autistic son, aged 17, who would “elope” (according to her) but when I lived with them for a week, I observed that “eloping” meant he went outside to the basketball court to shoot some hoops or otherwise did harmless things outside but his mom would get frantic because she couldn’t see him. This mom has a legitimate concern with the police bringing Jack back, but that, too, might be mitigated with a tracking device (if Jack agrees to wear one) because it would show the police and other government authorities that she was taking measures to keep track of where Jack goes and watching for his safety.
I could not find what I was looking for but I found this:
https://www.kcdsg.org/behavior.php (pan down)