Tuesday, July 8, 2014

The connections you make in Special Needs World


A pile of pebbles lay on the street in front of our driveway. The town road repair crew had stopped by several months ago after I called; Max needs a smooth surface when he rides his bike. Only the patch had started to break up and after last week's thunderstorm, it was history. Max's bike kept getting stuck in the gravel and once, he almost tipped over.

Yesterday, I called the town department that handles roads, and the secretary said she'd have the supervisor call back. When he did, I told him that we needed a more permanent paving solution and he promised someone would come by in a few days. I thanked him, and explained that I had a kid with disabilities who needed a smooth pavement to ride his adaptive bike.

"I also have a son who's disabled," he said. "He's older. It happened two years ago."

In a heartbeat, I knew who this father was, and what had happened to his son. I'd read about it in the local paper: He fell off a ladder in the pool in his backyard, landed on his arms and sank to the bottom. I'd contributed to a fund set up to help the family make alterations to their home. I'd wondered about stopping by with Max to say hi, and then wondered if he want that and so I hadn't.

"I know who you are," I said. "Your son had a pool accident."

"Yes, he's a paraplegic now," he said. 

And then, we were talking. He told me about the challenges of finding stuff for him to do. About how his son would notice people staring at him when he went out and how uncomfortable it made him. About how his son's spirits hadn't faltered and this father hoped they wouldn't. 

His wife, it turns out, used to teach at Max's school. This man pitches in with a local club that sponsors a camp Max goes to for a week every summer.

We talked about how you never knew what life was going to throw your way, but you found ways to deal. His son was using voice recognition technology for TV controls. He had use of a knuckle, and he texts with it. We talked about adaptive sports programs, and I promised to send some links.  

I have an 11-year-old who had a stroke at birth and got cerebral palsy. This father had an 18-year-old teen who had lost the use of his limbs in an accident. And yet, we had an instant connection and a mutual understanding. We were eager to share info and resources. We faced similar struggles with our children.

We knew.

Every single time I meet a parent who has a child with disabilities, I feel less alone—and I hope that the other parent finds our encounter similarly heartening. It never gets old, it's always a moment. I can recall dozens of these conversations over the years: that mom at the birthday party whose child has autism, the fellow commuter on the train whose child has Down syndrome. And then there are the countless online connections I've made with other moms and dads. We don't just have a bond, we inhabit a world that other parents know nothing about.

"It was good to talk with you," I said as we hung up.

"Yes, it was," he said.

We knew.

Image: Flickr/Tanaka Juuyoh 

11 comments:

  1. Connections like that are priceless - this made my day. thank you - Kristen

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  2. To be honest, this is why I follow your blog. You have so much in common with us even though our kids have different challenges. The mutuality of the experience is very comforting and really helpful too. Many of your "followers" also bring their life experience to the table to add to the mix.

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    1. It's been eye-opening to me how much parents of kids with special needs have in common...as pretty much everything has been eye-opening to me in this journey! Thanks, Dave.

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  3. Yes, we know. Thank you for a beautiful post, Ellen. These connections make us stronger.

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  4. Connections are priceless
    Connections make us stronger

    Thanks for the reminder :-)

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  5. Great post!! I was just thinking about this type of situation this weekend and was hoping you or your readers could give me some advice. I am the mom to a 2.5 year old with severe disabilities but because he is still so young and in a regular-looking stroller, it isn't apparent to others when we go out that he is disabled. "He's sleepy" is a common comment, but really, he is often tired and can't sit up or hold his head up on his own. There is a dad with a young daughter who uses a wheelchair and seems to have similar issues to my son but she looks older, probably 6-8 years old. They must live relatively near us and we seem to go to the same restaurants and grocery stores. Is it weird to go up to them and say hello? How do I even approach it without sounding weird? So many times people intend to just be inquisitive about our kids and end up sounding rude -- I don't want to be one of those people... But I would love to make a connection to another parent of a child who has faced similar challenges to my son who lives close by. Any ideas?

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    1. I used to get that "He's sleepy" comment when Max was your son's age. Over the years, I've approached other parents of kids with special needs in the same way that I ask for people to approach Max: Just say "Hi." Then maybe I mention something about our surroundings. Our I'll just come out and say something like, "My son has a disability, and I always feel compelled to talk to other parents." That way, it leaves the door open. I've never encountered awkwardness, I have to say; in my experience, other parents are always glad to talk.

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  6. I'm not shy. I'll either ask directly about gear with "we have someone in the family with some similar needs--where do you recommend shopping for XYZ?", or in other situations like playground or inclusion extracurriculars, there's always small talk that comes around to "how does Johnny like school?" where they'll often mention a SN school or program. Then it's "Jimmy's in a similar program and XYZ school. Who do you like for OT in the area?" I've done some pretty good networking this way, and the other parties are usually relieved and thrilled to meet someone who is living similar things.

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  7. Thanks for the reminder Ellen. Such a secure comfort to know we are not alone.

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  8. I have connections with the people in my resource class, with band people, other Minecraft players, my very small fan base, and I hope to make more.

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Thanks for sharing!