Showing posts with label support for special needs. Show all posts
Showing posts with label support for special needs. Show all posts

December 22, 2014

Christmas 2015

This week, at Support for Special Needs:
Excerpt: 
Nobody I know loves Christmas as much as Schuyler. This might seem surprising, given her own oft-expressed atheism. (Believers who are worried about her soul's peril might be slightly relieved to hear that she recently expressed some wiggle room on the question of the existence of God.) But Schuyler loves the music of the season, and the gift-giving (and the gift-getting, because she's no fool), and the general positivity of the season. Schuyler Noelle, who has as much reason to believe otherwise as anyone, has a seemingly bottomless faith in the goodness of people. She's better at being a human than just about anyone I know.

December 17, 2014

Some Thoughts on a Very Very Very Bad Idea

This week at Support for Special Needs:
Excerpt: 
When news stories come out detailing the mistreatment of special needs kids, I tend to think that the best thing we can do is shine a light on them, to try to force change through awareness. I'm not always sure that actually works, though; when you turn on the lights, the roaches scatter and run under the fridge, but they don't actually go away. Maybe I'm just helping give the roaches a little exercise.

December 8, 2014

A Scene, and a Revelation

Today at Support for Special Needs:
Excerpt: 
Schuyler's percussion teacher doesn't sign, but rather reads lips. That's not much help with Schuyler, whose lips aren't doing a lot of heavy lifting when she speaks. And so a big part of what Schuyler is likely to get from her private percussion lessons has little to do with drumming and everything to do with communication and information exchange.

December 1, 2014

Then and Now

Today at Support for Special Needs:
Excerpt: 
When I think back to my high school years, there's a significant difference between then and now. It's a difference that matters, and one that I suspect most people my age might appreciate. When I was in high school, I knew a few people with physical disabilities, but absolutely none with developmental disabilities like Schuyler's. To this day, I have no idea where they were even educated. I'm not going to suggest they were hidden away in some evil dungeon somewhere, eating bugs in the dark or whatever. For all I know, they were receiving a fine education, but they were elsewhere. And my own development as a human being suffered as a result.

November 24, 2014

Thanksgiving 2014

Today at Support for Special Needs:
Excerpt: 
I worry for Schuyler around my birthday more then usual, especially with the grey skies and desaturated colors of fall settling in for the coming months. It's just as well that Thanksgiving arrives at the same time. A day for examining the things for which I should give thanks, followed by a season of celebrating the better impulses of humanity, these might be parachutes in an otherwise rapid loss of emotional altitude. Perhaps I should simply be thankful for Thanksgiving and it's slightly contrived but much needed sense of "Quit your bitching and think of stuff to be thankful for!"

November 17, 2014

Boundaries, Drawn with a Dull Pencil

Today at Support for Special Needs:
Excerpt: 
Failure is how Schuyler learns. She is a remarkably stubborn kid; she fixates on problems, particularly those she perceives as injustices, and doesn't let go of them easily. (According to Julie, this is a case of the apple not falling far from the tree.) It can be frustrating as a parent, and hard to step back when she clearly does need help, but steadfastly does not want it. Schuyler wants to make her way in the world, even as she struggles to understand it now perhaps more than ever before. That world has become so much bigger, and her part in navigating it so much more complex.

November 10, 2014

Astronaut

Today at Support for Special Needs:
Excerpt: 
We spend years preparing our astronaut for her grand mission. Years. Then one day, in the not terribly distant future, we will count down and launch her into the unknown. We'll watch that flame rise into the sky, and eventually its brightness will fade and the rumble of the engines will be too distant to hear, and we'll sit in our mission control, in silence. 
When Schuyler takes flight and soars into the void, she will be alone.

November 4, 2014

The World I Want

Today at Support for Special Needs:
Excerpt: 
Given my heart's desire from a magic genie, I might not wish for Schuyler to be made typical enough to make it in the world. It is entirely possible that I would instead choose a world that had places for Schuyler, a world that found value in her weirdness and the patience to wait to hear what she has to say. If I were wise, perhaps I would recognize that given a choice between these two unattainable wishes, the second might just make for a much more interesting planet.

October 27, 2014

A Season of Making Sense

Today at Support for Special Needs:
Excerpt: 
We like Halloween around here. Part of Schuyler's fondness for the holiday probably stems, as it does for many kids with disabilities both obvious and invisible, from the opportunity to pass, if only superficially and for a short time, as no different from other kids. On most days, Schuyler is hyperaware of her difference, but on Halloween, the world is full of monsters and oddities and weirdos. Whatever she may think of herself on most days, this is the week where she's just one of the creepy crowd.

October 21, 2014

Deflated

Today at Support for Special Needs:
Excerpt: 
Today, I’m tired of the walking. I’m tired of screwing up, and I’m tired of other people treating Schuyler like a cute little pet who might pee on the carpet, rather than a complicated and nuanced human being. My weapon is a rubber sword today, and it feels especially ineffective. I’m just going to sit for a while and see what happens. I wish I had something in my tank, and I’m sure I will tomorrow. But not today. Sorry.

October 13, 2014

The Path to Self-Advocacy

Today at Support for Special Needs:
Excerpt:
Schuyler is never going to be a confrontational self-advocate, I feel pretty certain of that. She shies away from conflict, even as she holds the grudges that she develops as a result of it. Her own sense of justice doesn't always trump her desire to navigate her life with ease. She loves participating in marching band, for instance, even as she feels slighted by how she's treated (and more to the point, sometimes dismissed) by her band teachers from time to time. She's not interested in taking a stand, so she endures what she perceives as slights and focuses on the fun she's having. Sometimes she's a little student of Zen, in a way that I wish I could be but never am.

October 6, 2014

An Extraordinary Story

Today at Support for Special Needs:
Excerpt: 
In the list of commemorative awareness months, October's got a lot going on. It's Down Syndrome Awareness Month, after all, as well as National Dyslexia Awareness Month, National Breast Cancer Awareness Month, National ADHD Awareness Month, National Domestic Violence Awareness Month, Spina Bifida Awareness Month, and National Disability Employment Awareness Month. October kind of feels like Awareness Awareness Month, to be honest. Relevant to my own life and my own personal perspective, along with all those worthy causes, October is also AAC Awareness Month.

September 29, 2014

Two Simple Experiences

Today at Support for Special Needs:
Excerpt:
Now that Schuyler is up to her eyeballs in high school life, marching band has become something of a sink-or-swim experience for her. This has resulted in a few stumbles, such as when she took the field at last week's football game with big floppy shoes that were not just untied but actually unlaced because she couldn't do it and, for whatever reason, she couldn't find anyone to help her while the band was getting into their uniforms. The new independent model of Schuyler 2.0 has some bugs to work out of the system, but she's getting there.

September 23, 2014

Lily Pads

Today at Support for Special Needs:
Excerpt:  
Today, I have a brief message specifically for the parents of kids with special needs. It's a message that parents of typical kids probably need to hear, too, but I kind of feel like they've got supports in place, strong ones with foundations rooted deep within our social structure. Of late, I've been watching as one special needs parent after another falters, and I've seen how tenuous their supports really can be. Their supports; OUR supports. I suppose my message to them is a message to myself as well.

September 15, 2014

The Key

Today at Support for Special Needs:
Excerpt: 
Schuyler's voice is no longer a thing to squeak out of her iPad in close proximity. It's a thing that can travel beyond her immediate space. In some ways, Schuyler has found a way, though the simple act of handing a speaker over to a listener or placing outside of her own immediate personal space, to improve upon the natural human voice that she has been denied. And in handing that voice over to another, she creates a strange kind of intimacy, better than a shout. In a loud room, Schuyler can put her voice in your ear. I can't do that, and I find myself ever so slightly envious.

September 8, 2014

The Other Talk

Today at Support for Special Needs:
Excerpt: 
Typical parents fear The Sex Talk. (To be fair, so do we.) Many special needs parents have The Other Talk, too. We don't discuss the topic with others very much, but be assured that we think about it. When we approach the topic with our kids, we do so gently, because in even the most tragic circumstances, Death shouldn't eclipse Life, and the days we get with our kids shouldn't be entirely stained by our anxiety for the days we lose.

September 1, 2014

On Labor Day, 2014

Today, at Support for Special Needs:
Excerpt:
I'm not usually one for writing contrived holiday-themed posts here ("It's Arbor Day, folks, and special needs families just love trees!"), but I think I'm going to make an exception for Labor Day. There are a lot of hard working people in this country, but those of us in the world of disability parenting find ourselves surrounded by the hardest working humans on the planet. For our kids, finding success in school and in the world is a lot like being an astronaut. We understand that the person standing on the moon is an extraordinary individual, and we celebrate that person's achievement. We do so, however, with the knowledge that it took a team to support those efforts and help that astronaut arrive.

August 25, 2014

To the people like her, which is perhaps everyone

Today at Support for Special Needs:
Excerpt: 
When Schuyler looks at the future, she does so with her disability in mind, but not at the front of her thoughts. I envy her that. She's growing up quickly; today is her first day of high school, after all. We're having conversations identical to those happening in other houses around the world, about how it's appropriate for her to be thinking about boys she'd like to date, or girls she'd like to date, for that matter. ("Or both!" she said during our last conversation about dating; she's going to be trouble.) She asks me to teach her how to drive approximately every other day. When she breaks through her social anxiety, she laughs loudly and easily, and flirts without hesitation. Even a few months ago, I had my doubts about how she will navigate high school. She has those doubts, too, but she's working on them. And the thing is, only some of those doubts stem from her disability.

August 18, 2014

Unwanted monsters

Today at Support for Special Needs:
Excerpt: 
Schuyler understands her disability better now than she ever has before. I'm immeasurably proud of her for that. But every so often, when things are hard, she pushes back a little. She doesn't rage, she doesn't cry or fall into despair, all of which I imagine would be my own response if I were in her shoes. She simply goes on record as saying that she doesn't want it. She knows her monster doesn't require her permission to do its wicked work, but she denies it that permission anyway. I'm incredibly proud of her for that as well.

August 11, 2014

Deconstructing the Gentle Lie

This morning at Support for Special Needs:
Excerpt: 
Beyond mythological figures, there's the gradually disintegrating gentle lie we tell our children, the one that says that if they work hard enough or want it bad enough, they can do anything they want in the world. For kids with special needs, I suppose it's not all that different. As parents, we overbelieve, and we sell that overbelief to our kids, and that's not a bad thing, I don't think. As they grow older, like Santa, they begin to see the flaws in our lie, and as they deconstruct it bit by bit, they begin to incrementally build a more pragmatic truth in its place. They sniff out the path that does await them, the one that is meaningful and possible. As their parents, we can help, but in the end, it's not our quest. It's theirs.