Tuesday, January 22, 2019

We all make igloos for our children


I saw the viral photos over the weekend of that cool wheelchair-accessible snow fort built by two parents in Cincinatti, Ohio. Gregg and Sarah Eichhorn have nine children with disabilities and medical needs, all adopted. When snow fell the other weekend, Gregg and his brood discussed making it accessible to Elijah, 11, and Zarah, 19, who use wheelchairs. The parents went to work packing snow with some help from their kids and five hours later, they had an adaptive fort. That's them above with Zarah. 


It is not every day that someone builds a gigantic snow fort like this for their kids, so props to the Eichhorns for that. My best snow-building feat to date has been posing a snowman to look like he was taking a selfie with Sabrina's phone. But America seemed to think it was mind-boggling amazing that the couple made the fort accessible for their children. Thing is, that's what parents of children with disabilities do every single day: we carve out ways for them to enjoy what their peers do. "I keep telling everybody, it's really no big deal," Gregg Eichhorn told People.

We don't do this stuff because we are heroes, but because we are parents, these are our children and they deserve equal access to childhood and adolescence. And so we wrap modeling clay around a crayon so our child can better grasp it, put the noise-blocking headphones on so a performance won't unsettle them, build Halloween costumes that include their wheelchairs, load knock-knock jokes and fart sounds onto their iPad speech apps, sit behind them on the merry-go-round for support. When people aren't willing to include our children in activities and programs, we push to get them in.

We try our best to figure out a way. And when others are awed by the lengths that we go to, they may be overlooking or not understanding the reason why. Our children might have challenges that their peers don't but in the end, they are still children and teens who want to enjoy life, just like any children and teens. Repeat: just like any children and teens. 

I'm just not sure that's what people get from viral videos like this. They see parents or other people accommodating and delighting young people with disabilities (I'm thinking of that video of a 10-year-old boy in a wheelchair swing) and that "awwww" reflex kicks in. It's "heartwarming," the news reports proclaim, exactly why the masses love these videos. But our children and teens are not creatures who are being coddled or treated with astounding amounts of TLC—they have a basic human right to be included in snowfall fun and all that life has to offer.

We parents will keep right on making those igloos and forging paths and building bridges and climbing mountains for our children. And it would be so great if people got the reason why.

Image: Gregg Eichhorn 

11 comments:

  1. You hit the nail on the head as always, Ellen! Parents who live in snowy climates get really good at finding cool ways to play outside nearly half of the year. I live in eastern Canada and I'm 63 now. My Dad made a backyard skating rink for me and my sister every year. When Nick was born with CP in 1988, we fashioned warm sleds for him and brought him cross country skiing, dog sledding (our golden retriever pulled Nick when we threw a ball for her!) and my husband built a super cool snow/ice slide in our front yard for the kids. It's we did and it was no different from our neighbours.

    ReplyDelete
    Replies
    1. Donna,

      yes! You were all sharing the Canadian way of wintering.

      And there are always cool new ways of playing outside.

      Love to see the ingenuity across generations - your Dad and the backyard skating rink. And that he was prepared to continue it.

      XC-skiiing is brilliant. And it's good to have animals involved.

      Yes - your neighbours. I see the co-operation with things like Christmas lights and making these displays accessible.

      Delete
    2. Love that story about your golden retriever! And yes, amen to "no different from our neighbors." We visited Park City, Utah a while ago and tried dog sledding there, we all loved it.

      Delete
  2. I felt a bit off reading this story and the reactions as well. I tend to think people cry inspiration porn much too easily but this felt like turning the parents into inspiration porn! I have a physical disability and as a child wanted a tree house. I was not going to be able to climb a ladder into a tree house, just no way for that to happen. My friends and I built a small fort but it was pretty minimal. So one summer my dad, a carpenter, built me a proper fort. I was really happy and excited but I don't think he did anything more special than any dad who builds their kid a tree house. He just did it a bit differently for me. If I had been able bodied he would have built the tree house. He did go out of his way to build me railing across the back yard so I could try to skate and my parents spent a lot of money on an adaptive bike for me and then gave it to another family free od charge when I outgrew it. I think something like that deserves recognition. I was an expensive child but they wanted to make sure I was able to do as much as possible so they found the extra money (even though they didn't have much) to get me the things I needed and helped other people who simply did not have the money at all. Many of my friend's parents (regardless of whether their children were disabled or not) were more focused on what they wanted than what their kids needed/wanted. My parents did not have parents who met their needs but they did sincerely try with me (even if sometimes they missed the mark). If my parents were going to be recognized I would want it to be for their willingness to out aside their own needs and wants for me and for the help they often gave others. I would hope it's assumed that parents would, to the best of their ability, make activities accessible for all of their children, regardless of disability. It seems that the internet assumes it takes something special to meet the needs of a child with disabilities-it does but not more than it does to meet the needs of any child.

    ReplyDelete
    Replies
    1. A cry is of course an alert which helps us listen and act. And make our igloos. And remind us that we all want to enjoy life in all the ways which are available to us [and many which aren't currently].

      The treehouse was very relatable.

      Now that was a proper fort! Glad you and your friends built the small fort - sometimes we need examples to see what our children and those close to us need and want.

      A treehouse of my youth had a step-up which might have been covered by a stool or some similar equipment [thinking a triangular ramp would have covered it?].

      Passing on the adaptive bike. Now those are not often in the secondary market.

      Glad your family saw fighting against inequality and inequity a priority. And money can stretch.

      The Internet is very silly that way! If it saw how important public services were I think we would have less inspiration porn, especially in entertainment magazines like People.

      Delete
    2. SO well said, Anon. It's true, not all parents put their children's needs ahead of their own, and you were lucky to have the parents you did. But yes, people do assume accommodations take so much more effort. Kids take effort, period!

      Delete
  3. Ellen....
    You know what I find truly inspirational about this family, and their story? Not the wheelchair-accessible snow-created igloo!! As somebody who has a cosmic heart for special needs/disabilities, and adoption, I find it truly inspirational that these parents not only adopted nine children, but they adopted nine kids who aren’t ‘normal’ {whatever ‘normal’ is}, and who all have medical needs!! Wow!! Talk about nine ‘scary yeses’!! Not everybody would open their hearts, their souls, their homes, to these Beautifully Unique, fearfully and wonderfully made children of God!! That truly takes a special person!! Agree to disagree all you would like, but I am merely speaking the truth!! Good for Gregg and Sarah Eichhorn!!
    Peace out, Mary Lou

    ReplyDelete
    Replies
    1. Mary Lou:

      Thank you for reminding us of the power of the "scary yes" especially as it shows us how to build and maintain relationships in our communities.

      And the "yes" was probably a different variety of "scary".

      There are some good posts about scary kids out there. Like the one by Savannah Breakstone-Lodgson which was around the time of Sandy Hook.

      I read the Pound Pup Legacy every few months and for the better part of 50 years people have been doing what the Eichhorns do.

      Whether it's foster-adopt or adoption.

      Thank you for sharing fear, wonder, beauty and uniqueness. These things tend to build our igloos too and give them form and shape.

      Delete
    2. Yes, Mary Lou. Also: just having nine kids, period, is pretty awe-inspiring.

      Delete
  4. What inspired me about this story was that it was written by CiCi Adams, the Stuttering Journalist. I checked out a lot of her work after I read it in People.

    And read this from what Adams wrote last year:

    Don't call me an inspiration - the stuttering journalist.

    Important to highlight the writers and their frames and worldviews and how they adapt to their audience - and the audience to them.

    I wonder, too, how this story would have been covered, if the writer had been able or White. Or atheist/agnostic [Adams is a "theology nerd" - and that's one point of connection].

    And then the journalistic/entertainment supply chain.

    More structurals for our igloos!

    ReplyDelete
    Replies
    1. Thank you for sharing this post, CiCi makes excellent points. I think there is one other exception for when it's OK to be inspired by people with disabilities (besides when family and friends do, as she notes). As the parent of a child with disabilities, I am inspired in many ways by PWD—their accomplishments give me hope for Max.

      Delete

Thanks for sharing!