Wednesday, July 9, 2014

In which I again wonder what he'll do when he grows up


Max and I went to the local firehouse this weekend, where the guys know him by name. "Hi, Max!" said Firefighter Ed, who was busy washing Ladder 31, Max's favorite truck. He helped Max grasp the broom stick and then together they scrubbed Max and forth.

"It's my fire truck!" Max informed him, and he laughed, only Max wasn't kidding. He also refers to the station as "My firehouse."

Over the years, I've wondered about what kind of job Max might have when he gets older. I once teared up in Whole Foods as I watched a woman with Down syndrome clean tables before I got a grip and realized I needed to stop imposing my ideas of success on her or on Max. I don't get sad anymore thinking about what Max might have been able to do if he hadn't had a stroke at birth; I'm genuinely curious about possibilities. Like during his Lightning McQueen phase, I pictured him working at a Disney store, happily greeting people (and screeching when someone dared to leave the store with any Cars 2 merchandise). Now that he's in his fireman phase, I've been pondering that.

This weekend, I saw a CBS News story about Tony Tumminello, a man with intellectual disability in Lansing, Michigan who spends around six hours a day at his neighborhood station, Fire Station One, as he has for the past sixty years.


Tumminello first visited the station sixty years ago, a teen fascinated with fire engines. Today, at 73 he has his own place and a job at a flower market, but the firehouse is basically his home and the firefighters, his family. He eats all his meals with them. They do his laundry, clean his hearing aid, help him shower and tease him good-naturedly. Tumminello jokingly calls the battalion chief his "assistant."

I wondered if Tony Tumminello had ever asked about working at the firehouse. What kind of job could Max have, given that physical prowess is not exactly one of his assets? But Max, he's got his future gig all planned out, as he's been talking about since April: He'll ride in the back of the truck, and not drive it. He'll tend to fires only on ground floors, and won't climb ladders. He likes to walk around the house and make the whooshing sound of a fire hose spouting water and, even better, pretend that I am on fire and he has to put me out and then I gleefully shout "You saved me!" It's all very touching.

When I call home from work, all he wants to hear me say is, "You are going to be a fireman when you grow up!" And he wants me to say it again and again. And I tell it to him, five or ten times in a row, because he's 11 years old and he's so excited about the possibility and who knows what the future holds?  

Last night at bedtime we were reading Big Frank's Fire Truck, part of Max's growing collection of books about firefighters and fire trucks. Max was particularly amused by my demo of stop, drop and roll. At the end of the story (non-spoiler alert), Frank goes home to his family when his shift is done. 

"Max, are you going to go home to your family when you work in a firehouse?" I asked. 

"NO!" he said, firmly, a little alarmingly so, and then he reminded me that he was going to live in the firehouse.

"Are you still going to get married?" I asked, because he's previously told me that he's going to, and that he thinks the girl on that Disney show Jessie is pretty. (He's over Miranda Cosgrove, unless she happens to own a fire truck.)

"Yeah!" he said.

"OK, then, if you live in the firehouse, where is the person you marry going to live?" I asked.

Max pondered that. He seemed a little stumped.

"IN A SMALL HOUSE!" Sabrina shouted, from the other room.

Answers. There are always answers.

Image: Screen grab, CBS News video

14 comments:

  1. This is such a touching story. I wrote a few posts last week about success, quality of life and worry about disabled children's future. I honestly was sure I'd get a normal, high-class job when I'd grow up. Now that I'm 28, I do day activities making jewelry and cards. It's not a job, since the cards/jewelry don't get sold, but it's my acitivity, and I'm happier now in a way than I was when in school being pressured and subconsciously knowing I would never be a professor or the like.

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    1. Making jewelry and cards sound like very cool activities. I was working on an article recently and an expert was talking about how over-rated productivity is, how we all feel like we have to work our butts off to achieve some higher goal. But sometimes, the mere act of creating can be the most satisfying thing there is.

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  2. I want to open a bakery with raw, vegan, hypoallergenic, sensory-friendly, organic, gluten free, and corn free options.

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    1. Anna, that's a great idea—you'll have everyone covered! My request: carrot cake. My favorite.

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  3. I have no special needs whatsoever and it took me until I was thirty before I figured out what I wanted to do when I grew up.

    It's way too soon to panic for an 11 yo!

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    1. Oh, no panic! But those of us who have children with special needs do wonder. That said, I also wonder about Sabrina, who would like to be a chef. Or a vet. Or a writer!

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  4. Off topic, I've found Max's Christmas/Chanukah/Birthday/Whatever present for you. You're welcome.
    http://www.amazon.com/Snurk-Firefighter-Duvet-Cover-Twin/dp/B00JFGHSSW/ref=pd_sim_sbs_hg_5?ie=UTF8&refRID=1HCZP0JE8X6VV5DM26JH

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    1. O.M.Geeeee!!! I swear, just last night I was staring at his Cars 2 comforter and wondering when he was going to ask me to find him a firefighter one. Thank you!

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    2. I think there are a couple there that would suit Sabrina too :) I feel like I know your family, in a good way, not a creepy stalker way!!

      I have lots of thoughts on jobs as Miss 18 is now on her second part time job. She did the first for a year but got a little bored so started looking around and found a new job. She is supported by an employment agency who looks for work opportunities and provides job coaching and ongoing skill workshops. No cost, it's a government sponsored agency. She earns minimum wage (in Canada, $10-something an hour) and gets to spend all her earnings on whatever she wants.

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  5. I thought of you when I read this a few months ago -- sobering, but well written from someone who's been there.

    http://projects.aljazeera.com/2014/portrait-of-down-syndrome/

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    1. Thank you, whoever you are, for sharing this, I'm going to put it up on Facebook. It is the most powerful article I have ever read on the topic. Yes, it's very sobering that such a bright young man would have issues finding meaningful work. He reminds me of Max. I hope that by the time Max is older, sheltered workshops have been revamped. I hope there are more job resources and more opportunities for people with disability. Maybe like Jamie, Max will do some internships or volunteer work in high school. Articles like this only make me more determined to keep paving the road for him.

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    2. Excellent -- I was a little nervous about posting it, but I really appreciated it. I know you'll bring about the best you can for Max. The thoughts in the article will advance things for you, and in turn your efforts will most certainly pave the way for others. (Excuse the Anonymizing -- I'm just afraid of the internet.)

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  6. Max is specially created. He has a good and awesome family.
    My heart was touch on your post. How supportive you are towards his future.
    Thank you for sharing this simple testimony of life.
    Let others know thou you have a special kid, never give up nurturing them, we never know their future, but we know one day they will make you proud. Be happy, it is just like planting a tree, it takes time and effort to nurture it to grow.

    Lots of love
    michael

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  7. Theres a younger man in my community thathas 2 jobs. 1 he cleans a local daycare (that my son with autism went to) and 2 heis a volunteer firefighter. Both make him really proud and connected to the people. Everyone in town knows him. It gives me hope.

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Thanks for sharing!