Down Syndrome Awareness: What Would You Do?

A few days ago, I received this email from my friend Stacey (reprinted here with permission):

Hi Lisa, I’d like to get your feedback on something that happened today.
I’m working from home today and it’s a beautiful day here so I decided to walk to pick Tiven up at school. Near the school, standing near the driveway of a grocery store, was a young Asian man with Down syndrome. I’ve noticed that the older I get the younger other people seem, so who knows how old he really was, but my impression was he was probably a teenager. I didn’t recognize him as I do recognize many other people in our neighborhood, but he seemed lost and confused, so I said, “Hi!” as I passed. He turned and shuffled away.
About forty minutes later, Tiven & I were walking back the same way and I saw him again, standing in the same place, still looking lost but now also scared. He was wringing his hands and flicking his tongue in & out. I noticed that he was watching the cars go by like he expected someone he knew to be pulling up. As we passed, I said, “Hi, are you OK?” and he shuffled away. I stopped a little way down the block and watched him. If he was lost, I wanted to be able to help, but how could I help if he shuffled away when I spoke to him? We’ve taught Tiven that, if she’s ever lost, to stay where she is so we can find her, but we’ve also taught her to look for someone “safer” such as a uniformed police officer or a mom with children with a cell phone who can call for help. I got out my cell phone and Tiven & I walked past him again, I tried to speak to him again, and he shuffled away again, but came right back to the same spot when we walked away.
A block away there is a police station that we often pass on our way to & from school. I decided to go in and tell them about the young man I saw. I told them what had happened, described his clothing & appearance, and I said he’s not dangerous, he just seems lost & scared. I said I’d tried to help but he might need someone else like a uniformed officer. The cop looked at me quizzically, and I could tell he was thinking, “Why would some teenaged boy on the street need our help if he isn’t causing any trouble?” And then I said it. “He has Down syndrome.” And I felt guilty about that. Why did I need to feel guilty about giving the cop a useful piece of information? I don’t think he needed help because of his having Down syndrome, but because he seemed to be alone and scared out on the street for quite a long time, and because he didn’t recognize that I was willing to help. He seemed like he wanted help but he either didn’t know how to express it, or he didn’t know if it was OK to accept help, if that makes sense. For all I know, he was just waiting for his mom to finish her grocery shopping because he didn’t want to go inside on such a beautiful day!
Now I’m sitting here crying about this. I hope he’s OK but I also really hope that I didn’t make matters worse by asking the cops to check on him. I’m thinking about Finn being a teenager, perhaps lost in the city on one of your visits here, and I wonder if I did the right thing or not.

I responded to her that I think she absolutely did the right thing – exactly what I hope someone would do if it were Finn – and that I think the fact that the young man appeared to have Down syndrome was absolutely relevant information.

And it got me thinking: what would most people be inclined to do in such a situation?  I guess on the one hand I want to say that really, it’s not Down syndrome-specific, or even disability-specific; it would be nice to think that a person would look out for someone who appeared to be in need regardless of disability, etc.  I know that the reality is, however, that very often, people just don’t want to get involved (I’m guilty of this, too).  I wonder, though, if folks are generally more put off by someone who appears to have a disability – especially an intellectual disability.

What do you think?

Also, if you are the parent of a child with Down syndrome or another disability, how would you like to see a situation like that dealt with, especially if it were your child?

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9 Comments on “Down Syndrome Awareness: What Would You Do?”

  1. Melissa B
    October 22, 2012 at 1:59 pm #

    Kudos to Stacey for getting that boy help. We had an older man drive to our house a while back. He parked in our driveway and when my mother and sister approached him when they got home he was talking about how the cars were all parked wrong in the driveway. They went inside and he left. They went out again and came back later and he was back. Obviously lost and confused. They called the police because they were wondering if he had Alzheimers and had driven away from home – the cop came (not a very understanding person at all) and he harrassed him to show his license – which the gentleman thought was his library card. Long story short – he was from a town 40 miles away, he grew up in my house, did have Alzheimers and was “coming home” to the only home he could remember. The man and his wife stopped by on their way back to thank my parents for making sure he was safe and helping them find him. Their son was coming the next day to take the car away.

    I always err on the side of caution too with my students – some of whom have thanked me later for being the only person to care enough to reach out and get them help.

    There are not enough people out there today helping those who are obviously in need.

    Stacey – you did the right thing!

  2. Jaida
    October 22, 2012 at 7:46 pm #

    I wrote recently about the most terrifying experience of my life. Pacey let himself out of the house without my knowledge (he used the dog door) and after 20 or so frantic minutes I found him about a mile from our house. It was absolutely awful and I can say without hesitation that your friend did the right thing in getting someone involved who could help.

    Right now he is only 5, and I hope that one day he’ll be able to clearly communicate if/when he needs help and also HOW someone can help him (i.e. who someone could call, where he needs to be, etc). But right now I don’t know that he could do that and he may not be able to when he’s a young man either. I hope that if he ever finds himself in need of help, there is someone like your friend around.

    I have no qualms making sure a child is ok when they appear to be in trouble or need help, but I’m not sure what my threshold would be for getting assistance for an adult. I like to think I’d be comfortable enough to address the person myself and try to ascertain whether help was needed and respond accordingly (as did Stacey). It’s an even more difficult question when you consider an adult with disabilities that aren’t apparent by physical appearance…

    • Lisa
      October 22, 2012 at 8:32 pm #

      Jaida, a mile? That is terrifying.

      Over the summer, shortly after Scarlett was born and I was sick in bed with mastitis, Finn got out of the house without our knowledge. We have one of those childproof door-handle covers on the front door specifically to prevent him from escaping, but apparently it had somehow come off without any of us realizing it. So I’m in bed sick with fever, and Michael was keeping me company. I think he thought all the other kids were out in the living room watching TV. Suddenly the doorbell rings, and he goes to answer the door. It’s one of our neighbors from down the street bringing Finn home. He had gotten out through the front door, through the front gate (which he knows how to open) and taken off down the street. Fortunately, this neighbor a few houses down saw him and grabbed him and brought him home. He had no shirt or shoes on, just a pair of shorts. I was mortified that we had not been keeping a close enough eye on him – but more than that, for weeks I couldn’t get the what-ifs out of my head: what if he had run into the street (lots of cars that go too fast and blow through stop signs around here)? What if the neighbor hadn’t seen him and brought him home? What if he had just kept on going?

      Very, very scary.

      It does seem that a propensity to bolt is prevalent in kids with Ds. I wonder if they tend to eventually outgrow it? I’ve read, too, that even adults with Ds often have trouble navigating, especially in unfamiliar areas. If this is true, then it does seem that they are at a higher than usual risk for becoming lost.

      • Jaida
        October 22, 2012 at 11:31 pm #

        I think more of us have these stories than we necessarily share with just anyone. It’s awful in so many ways. It makes you feel awful and neglectful, although like you, we had protected every other exit because we know he likes to wander. I love that he feels so confident and independent but JESUS.

        For the record, Pacey took a trail back through the woods on our property and came out in the adjoining neighborhood, a walk he’s done with my parents before. So he didn’t walk a mile on the street, but I found him just as he had come out into a cul de sac and who knows where he would have gone next.

        It took a few stiff drinks to get over it, as I’m sure it would have for you if you hadn’t been in bed with mastitis (omg). So happy Finn is ok and that’s interesting about adults with Ds. I’ve thought seriously about some sort of GPS device at this point, or at least some sort of permanent bracelet or something with contact info.

      • Lisa
        October 23, 2012 at 12:04 am #

        Yes, I’ve been thinking more and more about a bracelet, too. But that won’t keep him from running out into the street 😦

  3. SallyK
    October 23, 2012 at 2:27 am #

    We had a scary experience with our son when he was in junior high school. Andy went to our local school and rode the regular bus home each day. Somehow he got on the wrong bus after school, missed the bus, something happened and he ended up in a different part of town than we live in. I won’t go into the outrage I had about why no one knew how this happened and how we never found out why. Suffice it to say, when he did not get off his regular bus when it stopped on our corner I drove to the school, looking for him along the way. The principal was as shocked as I was – where could he possibly be? I could not even think straight. The principal called the police and they had already been called by a lady who found him wandering on her street. Thank God for this angel, who looked out her window, recognized not just a lost teenager but also recognized that he had a special need. Who knows where or with whom he might have ended up. Your friend Stacey was exactly correct in her action – and the police needed to know his special need. If they responded and were not needed, great. But if they were needed, there is a grateful family member out there somewhere. Kudos to Stacey and her concern for this individual.

  4. Stacey
    October 23, 2012 at 6:47 am #

    Thank you all for the kind words. I’m so glad to hear that moms-in-the-know believe I did the right thing because I was really questioning whether I had jumped the gun or underestimated the abilities of a teenager with Ds. I never knew that kids with Ds have a tendency to wander off and/or an inability to navigate. That information will definitely help me feel more confident if I ever encounter this situation again.

    I had hoped to be able to post a happy update but I know nothing. I’ve heard, from someone who was leaving the grocery store at the time, that a police officer brought the boy into the store looking for his mother; I don’t have any other resolution to this story. I went back to the police station this weekend but they wouldn’t give me any information, and I didn’t see it as an “incident of interest” on our weekly police newsletter. I’m glad I was able to help

  5. Jody
    October 23, 2012 at 4:54 pm #

    Honestly before reading your blog and others related to special needs I would definatly shy away from a situation where a special needs individual is concerned….sad to say but my ignorance was the problem. NOW after a better understanding I am never going to shy away from a situation like that. I am thinking learning American Sign Language would also be valuable in a situation such as that.

  6. Amy
    October 23, 2012 at 11:13 pm #

    I totally would have done the same thing, special needs or not. Teenager, adult, or child. He was in distress and needed help. There are many medical conditions that can cause people to become confused or disorientated. He was obviously scared and unsure of what to do.Thank you for taking the time and that extra step to make sure he was safe. I would want someone to do that for my child as well. Hugs, Amy

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