In the Country of Difference

An autumn walk  "If you've met one autistic child, you've met one autistic child." 

It's a statement that's totally impossible to disagree with. I've certainly said it, or variations thereof, time and time again in advocating for accommodations in the classroom, at the swimming pool. and elsewhere for Charlie. 

Much as that statement rings true, I think there's a bit of a dangerous side to it.  If we only emphasize the differences among our children (and ourselves, and our experiences), what do we have to talk about, to share, to find community in?

TH is the oldest son of Emily at A Life Less Ordinary?. He's is 8 years old and has Asperger's and he couldn't be more different from Charlie in many ways. And yet there are tremendous overlaps and parallels. Emily is now homeschooling TH after a pretty wrenching (understatement several times over) experience in the public schools. Unlike Charlie, TH was mainstreamed. Like Charlie, there seem to be some, what to call them, limits to what a public school is willing to do to fully accommodate kids who don't "fit the mold." (Though after reading about physical attacks on TH by other children, and by one girl in particular, I'm really wondering who're the children whose "behaviors" need addressing.) The outrage Emily's written about—coupled with extensive efforts to educate the school and others about TH and the autism spectrum—ring very familiar. We don't homeschool Charlie and, frankly, don't think it would work for him. But the seemingly eternal quest to find a way to create a world, a space, for our children to fit in, the dogged efforts to try to make that happen and the troubled feelings when it doesn't work out—for all the differences on the surface, I feel that TH's and Charlie's stories are very similar.

Dimitri is the only child of Emma at The Iron Chicken. He is 10 and has Angelman's Syndrome and lives in Athens; I was fortunate to get to meet Emma when I was in Greece with students last March. Dimitri and Charlie have different diagnoses and live in completely different places. Often when I'm reading Emma's accounts of taking Dimitri on public transport, of picky eating habits, of long days together, I feel like it's precisely what I've gone through taking Charlie on the subway (which we have taken an indefinite hiatus from); wondering if he's ever going to eat anything other than store-bought sushi or take-out in plastic containers again; recalling long hot summer days or freezing cold winter ones when it seemed that he and I had run out of options of what to do and it would be hours still when Jim could get home on the train from the Bronx. 

And just to strike a little note of holiday cheer, warmth, good will, peace on earth to all humankind and that sort of thing, I'm grateful so much for blogland, for making it possible to be part (however virtually) of a community of families with children with disabilities, of individuals with disabilities. 

Not everyone has to endure sending their child day after day to a public school environment that gets so hostile we just have to take our kids out.

Not everyone sights a stranger with, for instance, a McDonalds bag or worry beads, and goes on guard lest one's child tries to take those.

There's way too many other bloggers and blogs, friends and families and parents to note so, at the risk of getting mushy, I'll just send out a huge THANK YOU FOR SHARING. And just THANK YOU.


And having gone on about the benefits and community-building of blogging, I thought I'd mention a relatively new entrant into blogland who just happens to my dearly beloved fellow Autismland traveler, Jim. He's been writing more on
The Irish Waterfront and not only about the book or the waterfront or "feeling Irish" but, more and more, this country of difference that we all have found ourselves inhabiting.

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Comments
15 Responses to “In the Country of Difference”
  1. farmwifetwo says:

    We still deal with the “one child with autism” problem at school. I like to think they’ve learned a lot because of the difference btwn my boys. What one likes, the other doesn’t… about everything.
    But unfortunately, teachers nor administration last long at various schools, nor do they remember last year was different… I have trouble remembering so I can’t blame them.
    I’m still upset about the little one and wait for the new IEP. The elder is doing well, his teachers (2 in that class) are flexible in his needs and pleased with is accomplishments, and his Math teacher sent home the fractions section per my request… WOW!!! And we had a good chat… WOW he called me!!! on Thurs.
    All you can do is try. I’ve had people go out of their way to help us. I’ve had people that are ignorant to us… I thank those that are the first and am snarky (politely) to the ones that are the second.
    Luckily in small town Ontario…. we’ve had fewer bumps than most.

  2. mumkeepingsane says:

    I also love reading about others taking this similar journey and feeling that sense of company. Even though I’ve taken a blogging haitus I still really enjoy reading and commenting on blogs. I sure look foreward to regular Charlie updates! I agree that, while each child is unique, when you look for them the commonalities are there and they’re important to recognize.

  3. emma says:

    Starting to go a bit mushy myself reading this 🙂 I’d like to thank you for continuing to write about your journey with Charlie, and for reminding me to take a step back and let go of some of the anxiety. It’s helped me regain my own peaceful-easy-feelings which were more than wavering this past summer.

  4. Judy T says:

    Ironically, I have found that as my Aspie gets older, his similarities to the broader group of ASD children seems to grow. This may be because the expectations of older children is so much greater, and his “differences” are therefore much more noticeable. Part of it is that when an 8 year old doesn’t respond when spoken to, it’s more of a “kids will be kids” thing; when a teenager refuses to respond to an adult in authority, it’s “weird.” Similarly, younger children haven’t learnt how to be defiant more elegantly; typical teenagers will do things more surreptitiously. My son isn’t being defiant, although it often looks that way to the “uninitiated” – he’s just not as compliant as he’s “supposed” to be … in front of the authority figure.
    Another issue is how anxiety affects him, and how that manifests. Like Charlie, my son will “hide.” He used to like hoodies, but I think he must have gotten in trouble for playing with them in school (or something of that sort) because he stopped wearing them. Nevertheless, when he’s upset or anxious, he will adopt the physical stance of someone hiding inside a hoodie. He also becomes mute when anxious (or very tired). He has recently started to learn ASL, and much prefers using it, when stressed/tired, to speaking, despite having excellent language (like many Aspies, he was the “little professor” in his language development). HAVING language and being able to USE language are two very different things.
    Inclusion in education also was not an option, any longer, for my son. He is very happy in his private placement, where he feels normal, and is able to make friends. The teachers, for the most part, “get” him. We are so grateful to have found this school for him. As everyone knows, a good school placement can be the difference between a happy, learning child and one who is in serious crisis. Another similarity amongst all of our children!

  5. Rose says:

    Kind of related…when I started homeschooling Ben I thought…”Where are all the LD kids?” (Learning Difference).
    Turns up nearly half of the boys in his homeschool group are Aspergers. And one a LOT like Ben.
    Not fitting in to public school seems to be more common than one might think!!! If we could afford a special school, we’d be there, because every parent there has been down the same road, I’m sure.
    Thank you for allowing us to take part in your life, and in rooting for Charlie!

  6. Rose says:

    Kind of related…when I started homeschooling Ben I thought…”Where are all the LD kids?” (Learning Difference).
    Turns up nearly half of the boys in his homeschool group are Aspergers. And one a LOT like Ben.
    Not fitting in to public school seems to be more common than one might think!!! If we could afford a special school, we’d be there, because every parent there has been down the same road, I’m sure.
    Thank you for allowing us to take part in your life, and in rooting for Charlie!

  7. Monica says:

    Public school’s “mission” has always been about “fitting the mold”. (Traditionally, anyway.) After all, it has served as the gateway to assimilation for many immigrants. A teacher cannot police everyday instances of cruelty or misunderstanding. In this way, the public school is a mirror of society. Unfortunately, the inclusion and special education programs at public schools have been much more geared toward addressing learning differences such as dyslexia, etc.

  8. lynne says:

    I second the sentiment of being grateful for the blogland. I’m not as active as many, as I only comment in a couple of places, but gain so much by reading everyone’s experiences. Not just comfort but fresh ideas for what I might try with my son.

  9. Squillo says:

    The other thing I think we sometimes lose sight of is that we and our kids share a the common experience of just being kids and parents. Many–even most–of the joys and woes of parenting a special-needs child are simply those of parenting in general, perhaps amplified by the particulars of our kids’ differences. Dealing with bullies, concerns about “inappropriate” public behavior, problems with school–all parents experience these things. I think our advocacy efforts are stronger when we remember (and remind others) that we are, in a sense, advocating for all children and families.

  10. karen d says:

    Kristina, your blog in particular has helped me SO MUCH to make sense of the challenges I have faced in making the right decisions for Pete and have given me a sense of “I’m not alone” even though –as you correctly say– none of our children are exactly alike.
    I think I have been extraordinarly lucky to live where I do (Castro Valley, CA) because I’ve had very few issues with the school district. Pete has been made to feel very welcome in all but one school (he’s in 3rd grade now) and I think that had more to do with the teacher than the school or district. Mainstream kids always say ‘hi’ to him when we get to school and are navigating the many 4-square games on our way to his classroom. His teacher, support staff, and even the principal have been wonderful to him.
    I fear the bully issue as he gets older, but you know, one day at a time.

  11. autismvox says:

    @Squillo,
    One reason I’m glad I dropped off/picked up Charlie every day when he was in elementary school was because I had plenty of chances to talk to other parents about their kids and issues. The precursor to me blogging was when I edited the PTA newsletter for Charlie’s then-school; I’d often write a little “editor’s column” about whatever holiday it was and inevitably threw in something about Charlie, noting his particular diagnosis in passing but aware I was writing for an audience of……parents, teachers. As you wrote, it was really good to note that it was general issues of _parenting_ that were being discussed. And in those conversations, plenty of people noted that one of their children had an LD or ADD and sighed over those struggles, while always being really nice to note that Charlie had so many.

  12. autismvox says:

    @Squillo,
    One reason I’m glad I dropped off/picked up Charlie every day when he was in elementary school was because I had plenty of chances to talk to other parents about their kids and issues. The precursor to me blogging was when I edited the PTA newsletter for Charlie’s then-school; I’d often write a little “editor’s column” about whatever holiday it was and inevitably threw in something about Charlie, noting his particular diagnosis in passing but aware I was writing for an audience of……parents, teachers. As you wrote, it was really good to note that it was general issues of _parenting_ that were being discussed. And in those conversations, plenty of people noted that one of their children had an LD or ADD and sighed over those struggles, while always being really nice to note that Charlie had so many.

  13. autismvox says:

    @Judy T, I can’t second your 3rd paragraph enough, especially that “As everyone knows, a good school placement can be the difference between a happy, learning child and one who is in serious crisis. Another similarity amongst all of our children!” And what you noted about your son adopting the “physical stance of someone wearing a hoody”—I think that can well describe Charlie whose regular post is to stand with his head slightly bent down and his hands pressed over his ears, elbows up. Funny but last year he insisted on having his hood on all the time, now I had to remind him to put it on, even on a cold cold walk.

  14. Astrid says:

    I think the “one chidl with autism” comment is more meant to combat prejudice from educators etc, who hold that a diagnosis dictates exactly what intervention would be required, as in: “Oh we had another autistic student and he didn’t need a 1-on-1 aide at all, so we aren’t going to provide your child with one either.” It wasn’t meant to drive out parents (or autistic adults, cause the same mantra goes on in the autistic adults community) from seeking community from each other. I, in fact, have found myself seeing similarities with the people who quite emphatically distance themselves from me for being different (eg. parents of severely autistic children, while I am adult with an Asperger’s diagnosis). I try to recognize that, while everyone is different, it is very possible that there are similarities to be encountered, and we canf ind company/support in other people’s similar experiences.

  15. Ali says:

    Judy, I don’t think this is too surprising, myself:
    “Ironically, I have found that as my Aspie gets older, his similarities to the broader group of ASD children seems to grow. This may be because the expectations of older children is so much greater, and his “differences” are therefore much more noticeable.”
    I think it might even be behind a lot of the missed and late diagnoses of women and girls and those at the end of the spectrum where it’s sort of a grey area of borderline autism/borderline neurotypical presentation. I definitely have come off more autistic the older I’ve gotten, though I wasn’t ever diagnosed as a kid–like you said, the more we expect from the peer group, the more obvious anyone who’s not doing that becomes. (Also, hoodies are fabulous.)
    Kristina, I don’t know what to say except that Charlie, and you, and Jim, all seem wonderful.

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