Wednesday, October 9, 2013

"Why no stroller?"

I wrote a post on tonight's parent/teacher conference night at Walter's school. I made a comment that I couldn't take Alex's stroller and I got a question...

"Curious - why no stroller for A? I'd drag a stroller for 4 if I had the money."

I could mention a hundred thousand reasons why not, like 17 stairs to the front door, but they'd all just be covering my embarrassment of the truth.

Truth is, I'm scared.

I act like things don't bother me. I hide behind anger or sarcasm or mockery. I do my best to turn it back on them. I crack jokes, I subtly or straight up make fun of what is said or call them out on their ignorance, arrogance, and bad manners to make sure they know their words can't touch me... but, really, sometimes it bothers me. Quite a bit.

"Frankly, it's embarrassing that you cannot even get your child to walk when he is obviously capable of doing so (as well as being capable of doing many other things that you are not making him do)."

"The fact that you apparently have the same problems with your other kids also suggests that you need to start acting like a real parent to them."

"And I would suggest that Alex is capable of learning to listen to you and not wander if he isn't a rebellious brat."

or...

"Perhaps you could teach your son to not step right in front of people? You and he are absolutely entitled to go though your life not getting The Look, but, um, teaching your kid to give others the personal space to which they are entitled would likely work better."

To hear this from a stranger is fine. Well, it's not, but it's not unexpected. As one of them said, I can easily say that they don't know the situation, that they don't know Alex, that they can't possibly understand. I can take a few minutes to set them straight and have fun doing it until I actually get pissed off.

But what would the school think seeing me roll him down the hall nice and easy, calm and content? They have to walk him all day. If not in the same halls we're walking, in halls that are similar.

Or, even worse, what are the other special needs parents going to think? They are walking their kids. What is wrong with me that I'm too lazy to put the effort in when I am no different from them and Alex is no different from their kids? Granted, I haven't seen anyone else's hand wrapped in their kid's shirt yet but I'm usually busy making sure my own kid doesn't run off.

Their judgment I can't take. Not on something I'm not 100% sure on.

I can take his stroller to the doctor's office, the store, to the library, the zoo, wherever we go that he won't be able to walk the whole way or stay with us without getting overwhelmed by the things around him and the things expected of him and drop to the floor or bolt for the door but to take it to school?

No. I have a hundred thousand reasons I can give you...

3 comments:

  1. I follow your story here because my daughter Sophie who's 3.5 sounds like Alex in many ways. She is still in a stroller and really- I don't see her stopping anytime soon. I know your son is older but I have many of the same feelings already. She's a tall 3.5 year old, most people think she's kindergarten age. What's "worse", she's an active kid and when I unbuckle her at the playground she runs for the structure, climbs, is able to run for 2 hours! And then can't walk half a block home?
    I don't know what the solution is, she's not even a bolter, she just doesn't go where I want, I can grab her wrist and drag her yes, but usually end up carrying her or she will sit on the ground and play with pebbles... I don't know.
    So in a long-winded way I'm saying I get it, but I don't really know what to do either. Her feet are dragging on the ground now so do I buy a special-needs stroller? Do I "make" her walk? I don't know.

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  2. I understand where you're coming from. My 11 year old uses a stroller and/or a wheelchair. Sometimes it's for stamina reasons, sometimes because he's having a gazillion seizures and can't stand, and sometimes because he's a runner and it's dangerous for him otherwise.

    The feelings are mixed for all of us, as we struggle to navigate what's necessary for our children and how to properly accomodate them. But I am of the belief that we set the tone for the rest of society. If we approach our kids' unique needs with confidence (NO ONE knows our children better than we do, and NO ONE knows what they need to live a comfortable and quality life better than we do) then society will follow.

    It doesn't matter what we do or don't do; there's always an asshat waiting just around the corner to stare us down and tell us how we're doing it all wrong. Fuck em. I swear, it's the easiest way. You will not remember these people individually in the long run. What you will remember is all the ways you provided your child with the necessary services and equipment to help him succeed. That's ALL that matters.

    Easier said than done. I know this all too well. But follow that intuition and let love guide you.

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  3. I completely understand-when you have more than one kid, and others with issues too, how can you possibly separate yourself to hone in on one behavior or one goal when you are multitasking like no other. I too try and brush off the comments or suggestions, although I do find where I live to be more tolerant, but in the end those comments hurt you deep down when you get 3.2 seconds to maybe sit and think. I try and send messages through facebook to my small community about why my kids aren't as capable as others and try and educate the few that I can reach in hopes of spreading understanding. Know though that you are not alone , so very not alone-my struggles are similar, and I have never faltered at admiring you through your perserverance and your humour. Keep hanging in Mama.

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