Tuesday, March 26, 2019

I'm going for a walk, Max said

"I'm going for a walk," Max said, as if it were no big deal. It started a couple of weekends ago. Sabrina and I were arguing, and Max didn't want any part of it. But instead of chilling on our front porch, as he likes to do when he needs a break from family drama or just wants to be alone, he'd decided he was taking a walk. We stepped onto the front porch.

"Where do you want to go?" I asked. Max gestured around the corner.

Max had never been beyond our block by himself.

A lot of thoughts went through my mind, scary ones. Max knows not to talk to strangers. But would he walk further away than he was supposed to? Could he fight off a creep in a car if one tried to abduct him? There was that story about that young boy in Brooklyn, NY, whose mom let him walk home alone from camp for the first time and a deranged man lured him to his apartment, hacked him to pieces and stuffed him into a refrigerator. My mind is a repository of awful things that have happened to children.

My main reassuring thought: Max recently got an Apple Watch and we now can track him via the Find My Friends app. My other, somewhat less reassuring thought went something like this: Max is not such a lightweight. When you lift him, he is dead weight because his body just sort of sags into you. So maybe his cerebral palsy would save him from a Bad Guy.

I know, I know: Total and utter mom paranoia.

To Max I said, simply, "Yes, you can take a walk. Just look both ways, OK?"

I thought about posting a heads up on our local neighborhood Facebook group. And then, I held back. I decided to let him go it truly independently.

Max carefully walked down the steps of our porch and took off, grinning. I watched till I couldn't see him anymore, my heart twinging. I kept my eyes glued to Find My Friends, following the orange dot that was Max, until I got distracted by my fight with Sabrina. Then I realized I've gotten a series of texts from a neighbor:

Max is out walking by himself. Is this cool with you? 

Just checking I've never seen him take a walk alone. 

Now he's walking home, and he seems fine! His independence is awesome! Sorry I'm just watching out for my neighbors, don't mean to pry. 

I told the other mom that it was nice of her to check on him. A couple minutes later, I saw orange dot headed home and stepped onto the porch. Max still had that big grin still on his face.


Letting your child with disabilities flex his independence is really, really hard, as much as you may want it. It takes time to accept that this child you've coddled by necessity for so many years, this child who has been dependent on you for so much, will be OK when you are not right there to look after him. It's about baby steps—for your child and you.

A few days later, I was at another neighbor's house and she told me that she also saw Max taking his walk that day and he looked awesome. I beamed at her.

This weekend, Max was out and about again. He'd go a block or two, come back home, then go out and do the same all over again. Each time, I was glued to Find My Friends. Once, when the orange dot seemed to veer slightly off the lines that were streets, my heart stopped—had Max gone into someone's home he didn't know?! But a few seconds later, orange dot was moving again.

Another message arrived from a neighbor. We have an artist in our neighborhood who's built a gigantic skull sculpture. It may not have received the warmest welcome from everyone around here, but it seemed that Max, my friend reported, "was so thoughtfully examining" it and other stuff in this person's yard. I seriously loved that.

Yesterday, Max headed out after he got home from school. I was in the kitchen with Ben when the doorbell rang. It was one of the guys who cuts our lawn, typically a man of few words.

"MAX IS ON THE OTHER BLOCK WALKING BY HIMSELF!" he announced, breathlessly, lit cigarette in hand.

"Yes, I know, thanks—he's good!" I said. "He's a teen. We're letting him take walks."

He nodded, took a puff and took off.

"Thanks again for letting me know!" I said to his back. He waved.

Oh, my heart. This somewhat curmudgeonly dude was looking out for Max.

Yes, it takes a village. And a leap of faith. And repressing your usual mom-of-a-child-with-disabilities instincts. And maybe a nice big glass of wine.


  1. I am working with my local Karate master to develop a 6 week course on personal safety and self defense for my daughter, 23 has down syndrome. We are going to offer it to a small handpicked group of about 10 young adults who are currently out there in the community without supervision, e.g, class to gym or work to friend's house etc.

    My daughter is excellent at following routines and it is not her I worry about, it is the rest of the world I don't trust. I wonder if this would be a next step for Max, even one of the many existing programs out there that he could participate in like Home Alone or Self Defense.

    They will be covering things like, personal space, danger signals, assertive body language, how to break free of an unwanted hold and most importantly (to my daughter and most women out there...) to SCREAM. The teacher tells me that the best weapon we have is our voice, but being able to scream is something we are discouraged from doing (be polite, be quiet, be a good girl) so they are going to learn, literally, to scream.

  2. Sounds like you have a pretty solid community in your neighborhood! I read an article once about the dignity of risk and how often people with disabilities are not allowed to take any risks. My 4th grade teacher would not allow me to do PE. She was so scared I would get hurt. It took a few weeks and my mom coming to school before my nervous teacher sent me out to play dodgeball with everyone else. I got hurt. I fell. I patched up my own bloodied knees and kept playing. Dodgeball with 4th graders is kind of brutal. But the physical pain did not compared to the mental pain of being excluded. That teacher went from someone I thought hated me to one of ky favorite teachers ever but she had to learn to let go. It's scary as an adult to know that it's easier for people to hurt me. I know that first hand and it sucks for you as a parent ro have to worry about if people will hurt Max. But by confronting your fears you are uou giving Max the gift of a fuller life, of more agency, and hopefully independence that will continue to grow. I know people who were so scared they never let their kids try anything. As adults these grown children are essentially helpless but very frustrated because they are capable of much more even with their various limitations. I try to encourage parents of younger kids to avoid thinking they can or should protect their children from everything-rather you prepare your child as much as possible so they can get what they want from life. Sometimes we protect other people in order to protect ourselves from fear and in the end that can end up hurting the very people we care about. I'm glad Max is getting a chance to flex his wings in a caring environment. This could be the first step in him eventually being able to go to a job by himself or catch an uber to his favorite resturant for a date. And it shows maturity that when he wasn't happy with the emotional state of the house he decided to go and take a walk, enjoy the outside, and let other people work out their own issues ;).

  3. I lived in the same apartment in Queens, NY from age 4 to 15. When I was 10 my mom let me walk to the local card shop to get her a mother's day present. It was about six blocks away and I was on my crutches. This was the very early 90'S so no tracking. Every single store owner I ran into asked where my mom was and if I needed help getting home. People who lived in my building, who were on their way home from work, and offered to walk with me. I had no idea until that day how much of a community I had looking out for me. It was very reassuring. For the next week people were telling my mom how awesome it was to see me out and about. Memories I still treasure.

  4. For most of my life I have been all about people with disabilities exercising freedom and the dignity of risk and all that. I still am. But I do occasionally get a jolt when I think back to moments in my life when I did new things, and realize that my parents were probably at least having heart palpitations, even though they almost never let on that they were nervous or surprised.


Thanks for sharing!

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