Wednesday, July 6, 2016

Do you, they say—but is that always OK?


Max has long been fond of anything on wheels—cars, trucks, trains. Also: This stroller he's had since he was three. It's an adaptive Maclaren one given to us by a former physical therapist. When Max was younger, it came in handy for wheeling him around. These days, Max occasionally sits in it if he and Dave have walked far and he gets tired, but it mostly comes in handy for entertaining him.

Max loves to wheel that thing around—up and down the block and sometimes, through our neighborhood. Which is exactly what he was doing yesterday afternoon as Ben cruised along in his stroller, beside him. While he does like to wheel Ben, he also likes wheeling his empty stroller around.

I have no issues with this, and Max could also care less what anyone thinks. It's harmless fun for him. That said, it's not really doing much for his image.

Max isn't good friends with any of the kids in our neighborhood. They're friendly towards him, and that's as far is it goes. The other week, some boys were kicking around a soccer ball and they welcomed Max, which was utterly amazing. As in, it really shouldn't be a big deal to do that but given that this doesn't typically happen, it was a big deal.

And so, the stroller. That he likes to wheel. Empty. I wonder if it is further widening the chasm that exists between him and other kids. The red Fireman Max hat sure hasn't helped, but he no longer wears that day in and day out, just on special occasions (at camp last week, he wore it constantly).

OF COURSE I want kids—and everyone—to accept Max for who he is, quirks and all. I wish they could see all that Max is, not just his disability. The stroller makes it that much harder.

I could suggest that Max quit wheeling it around or, at the very least, limit its usage. Maybe I could come up with an alternative for him to push around. He does like shopping carts. But that wouldn't do much for his image, either.

And this is where I get stuck. He's older and you have to help him not seem too childish, says one part of me. The other: Why mess with an activity he enjoys?

27 comments:

  1. Obviously you know what's best for Mas as his mom, but I think it's much more important Max be allowed to do what clearly makes him happy. -Sarah

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    1. I know. I know. I guess I've overly fixated on him wheeling around an empty stroller because I yearn for him to have friends in our neighborhood, although Max doesn't seemingly mind or care. The truth, as others have noted here and on the blog Facebook page, is that even if he didn't wheel the stroller around, he still wouldn't easily fit in with the other kids. I'm still coming to terms with that. Obviously. In the end, yes, what matters most is Max's happiness, and not any ideas of happiness (having friends) that I project onto him.

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  2. The stroller - I would guess that he likes it because of good memories associated with it. The things he was able to do because of it. The great times spent with dad. He had comfort in knowing if he wore out the stroller would be there. Could it be that now it is providing him stability that allows him to walk further and longer? When strolling next to mom/dad pushing Ben, there could be some of Max realizing that he too can do things that mom/dad do and right next to them (comfort). I read a blog post (wish I would have book-marked it!) discussing toys - age appropriate vs age respectful (I think that's the word). You provide Max opportunities to experience age appropriate things (toys, people, events, ...). At the same time you are respectful of who he is and what he needs at the current time. The lack of his readiness hasn't stopped you from providing these opportunities (and not forcing). The end result is that you have a great kid who is growing/developing by leaps and bounds these days. Great job mom (and dad, and Sabrina, and Ben too!)

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    1. Someone on Facebook also mentioned that the walker may provide stability, which I hadn't considered but is a distinct possibility. Thank you so much for the encouraging words.

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    2. I thought of stability and keeping Max upright.

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  3. If Max seems happy pushing the stroller, let him. He either doesn't care what people think or is unaware. Do you, Max. I am reminded of a quote from Touch Blue by Cynthia Lord "Those who mind don't matter and those who matter don't mind."

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    1. That is an outstanding quote!

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    2. The author of the book has a son with autism and one of her other books RULES is about autism from the perspective of a 10 or 11 year old girl whose younger brother has it. I highly recommend Sabrina reads it, it's very good and quite funny. Plus a character uses AAC and it's cool to recognize how far the technology has come.

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  4. If it really concerns you, suggest to Max that another child might benefit from the stroller and allow him to drop off the donation.

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    1. I'm coming around to letting him keep it, for now. He still does sit in it on occasion. At some point, I'd love to pass it along to another child in need.

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  5. Speaking as a mom whose teenager loves Elmo, I don't think the stroller is going to widen the chasm between your son and other kids, just getting older is what will do it. I think when our kids are younger, their being stuck on things that are a little below age level doesn't seem like a big deal. But when they move into being teens and interests change that's when the chasm gets even wider. So if the stroller makes him feel more secure I don't see it as a problem, but that's just my opinion!

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  6. Let Max do it. Don't burden him with the fear of not being good enough as I have done to myself.

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    1. Anna, you are too hard on yourself. Try to show yourself more appreciation.

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    2. Anna....
      "Don't burden him with the fear of not being good enough as I have done to myself." You know what? I absolutely agree with Ellen!! You are much too hard on yourself!! "Not good enough"? Nah.... You are good enough, Friend!! Like Ellen expressed, try to show yourself more appreciation!! You are Beautifully Unique, fearfully and wonderfully made, God has plans for your Life, for your presence, for your future!! ;)
      "Stay hard, stay hungry, stay alive", Raelyn

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  7. Why mess with an activity that he enjoys? Exactly. Don't. Not wheeling the stroller will not make him suddenly more mature in other ways and/or more attractive to the neighborhood kids. It's why I don't push my 15 year old to give up his Nerf guns. It's not like NOT playing with Nerf will make him interested in whatever the heck it is 15 year olds are 'supposed' to like. It would just be taking away his favorite toys...and he'd STILL be on his own around peers. Also, the Nerf (or the stroller or the whatever it is some other kids loves) give him an opportunity to start conversations with another kid who feels the same. Sure, it may not be an age mate. Sure, it may not be many kids. But they're out there, the kids who like things that are 'younger' than they are. We're not going to change our kids to be other than who they are, props or no props.

    I know you know this. You've said to yourself, both up there, and time and time again in the past. You've got this.

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    1. We have yet to encounter another empty-stroller pusher! He he. But points definitely taken. The stroller stays!

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  8. I feel the same about my ten year old wheeling her dolls around the block or shopping centre

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  9. Ellen....
    When I was a kid growing up {older that Max is, if memory serves me right} I had a white-colored boat bumper that an old family friend found on one of our camping trips. Well.... Because I wanted a canine so badly, {but I could not have one yet} I decided that he was a dog, a miniature Dachshund!! We named him Bob!! I even came up with a sad, somewhat tragic story about him.... Bob's fur was painted white. He had been abused and used as a boat bumper. So we rescued him!! I walked Bob around our city neighborhood for everybody to see.... Including kids who already thought of me as a freak, who already saw me as being different, who already knew that I was anything but "normal".... Kids who already laughed at and made fun of me. But I did not care!! Image? What image? I loved Bob the miniature Dachshund.... ;-D
    Well, I need to go. It is getting late and yet EVEN MORE post-Independence Day bottle rockets have gone off. I need to comfort my poor, noise phobic mutt, "Rosalita", my real dog!! I. Am. Getting. Tired. Of. Fireworks.... ;)
    "Stay hard, stay hungry, stay alive", Raelyn


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  10. Can he push Ben in his stroller instead?

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  11. I loved this post. As a mum to a little boy who is 4 with CP - reading about Max and his adventures enlightens me to possibly what we may be dealing with also along this road -when he is older. As yes, when they are younger you can get away with it being 'cute' but what happens when they are a older?! I think you are in every right to question it as that is what us mum's do. We love to beat ourselves up! You know in your heart that Max is happy but you worry for him, and that is what us good mum's do. You are such a great mum with what you are doing. Be kind to yourself. He is happy and you are all alive and well - that is all that matters xx

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  12. I am sure many kids are capable of seeing passed Max's disabilities and appreciate him for the great person he is, but this does not necessarily translate into be willing to make friends with him. Friendship is about commonalities: don't we all look for friends who share our views, values, hobbies? We may appreciate many people, but won't invite them to dinner because we don't have much in common. Teens are not patient: why would the kids in your neighborhood want to spend time with a child who acts and behaves as a young kid? I have learned to fully respect that. My husband and I, after all, don't have any adult friends with intellectual disabilities. We have learned that typical kids who are willing to spend time with Tim do it out of a charitable attitude, not out of friendship: because they are religious, or just because they feel a moral duty to help those who are more vulnerable. I appreciate the attitude, but won't call it friendship. Of course as family members we see things so differently, but family and friendship are not the same thing. Your child seems happy and well adjusted. Who cares if his image is not that of a typical teen. He is loved, happy, and developing to his fullest potential.

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  13. I grew up as an undiagnosed autistic kid who didn't have friends (and who was constantly teased and ridiculed by other kids for years.) More than once, adults in my life thought that the problem was my Sesame Street lunch box, the old-fashioned clothes I insisted on wearing or some other external thing. My seventh grade teacher called up my mother and asked why she couldn't get me to dress like the other girls. She wanted to help me fit in.

    The thing is, the things I did that were different were not the cause of my social problems. They were a symptom of it. Removing those things was not going to fix the problem and I wasn't going to fit in with a bunch of kids who cared about what other people wore, even if I was no longer wearing it. Rather, it would just create a bullied child who was ALSO miserable about what she was wearing. What would have helped - which nobody ever did - was to tell the other kids that I was allowed to like/wear what I wanted and to leave me alone. Eventually I made friends who liked me for who I was and they were well worth waiting for. (Largely they were people with their own differences, including a bunch of other disabled folks, my real peer group.)

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    1. You just said so much better what I was trying to say earlier. YES.

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    2. Exactly! We confuse "target and topic" - one good thing I learnt from Gray's immersion into the bullying literature.

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  14. Hi Ellen! I know someone whose daughter likes to push a stroller too. She fills it with heavy things so it's like getting an OT session at the same time! Also, I see potential business opportunity here - Deliveries by Max!

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    1. Yes. Two I immediately saw were golf balls and newspapers.

      Another one could be wood and firelighters, especially in the winter and with a permit/licence. And if his neighbours were to have a bonfire party...

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  15. I will find an empty stroller and push side by side with max just for fun. I think it's so beautiful when Max is innocence and so carefree. He just enjoy the simple things in life which I wish I can be more like that.
    I think we always want to fit in and do things alike but why do we have to? Especially Max has all the obstacle that he went through and he is doing so well, he should not have to change to adapt to the norm. He is the norm since everyone is different in their own way. Max is gifted and I want to be more like him. Every time I read about Max I smile. He is so cool.

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Thanks for sharing!