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

August 24, 2015

Seriously. Just Stop.

Today at Support for Special Needs:
Excerpt: 
Is it fair, taking that word away from you? Don't you have a right to use whatever word you please? Surely brave patriots gave their lives at Lexington and Bunker Hill so that King George the Third couldn't keep you from watching reality TV and saying "This show is so retarded." I don't have an answer for you, because at this point, the question isn't about your rights. It's not. You're an American; you've got the right to say whatever you please. (If you're not an American, then check your local listings, I guess.) You've also got the right to eat that pizza with the hot dogs in the crust or vote for Donald Trump. Being an American means you can do all sorts of horrible things.

August 17, 2015

This Year

Today, at Support for Special Needs:
Excerpt: 
This is going to be the year that Schuyler finds her way. This is going to be the year that no tense meetings will be called and no krakens will be released, a year without confused tears and crippling social anxiety and a father feeling like a failure because his daughter has again slipped into the cracks of the world. This is going to be Schuyler's year.

August 10, 2015

The Girl Unseen

This morning, at Support for Special Needs:
Excerpt: 
More than anyone else I know or have ever known, Schuyler possesses grace. It touches us all. The one thing that I can say for certain is that it's nearly impossible to meet Schuyler and to know her without being fundamentally changed. She has limitations, that is very true, and they are almost certainly more challenging than most people truly understand. But the limitations that hold her back the most are ours, I think. Our inability to grasp the world as she understands it, and our failure to make that world a better place for her. But God, how we are all trying. I'll be trying to do that until my very last living breath.

August 4, 2015

A Partnership

This morning at Support for Special Needs:
Excerpt: 
You may consider this a new policy of mine. I'd love to come speak at your conference, but just so you know ahead of time, you should be prepared to buy two plane tickets. I'm going to have a partner from now on, advocating for herself in her own strong voice. This is the path she's chosen, and I couldn't be more proud. With every presentation we give, I expect her to take on more and more of the content every time. This is appropriate for a young adult coming into her own as a self-advocate. This is a part of a future which she will write for herself.

July 27, 2015

Rough Numbers

Today at Support for Special Needs:
Excerpt: 
The article suggests that with the passage of the ADA, many were led to believe that the struggle for disability rights was over, when in fact it was just beginning. It's more like people with disabilities who have been fighting for equality were finally told "We recognize the battle you've been waging, now here's a bazooka." Or perhaps more accurately, "Here's a rock."

July 20, 2015

Steps and Stumbles

Today at Support for Special Needs:
Excerpt: 
How do you discipline a kid for whom her own actions are as inexplicable to her as they are to you? How do you move forward when the lessons built into the situation haven't been learned, by any of the parties involved? How do you face a future where your kid's independence is due to be recognized by the law far earlier than is appropriate, or even feasible? And how far should you go to take pieces of that legal independence away from them? You can tell yourself it's for their own good, and you can even mean it and be completely correct, but that doesn't diminish the feeling that you're taking something precious away and stealing from them the thing that they, and you, have always valued and dreamed of the most.

July 13, 2015

Twelve Years

Today at Support for Special Needs:
Excerpt: 
Schuyler's monster doesn't have a proper birthday. Perhaps it could be said to share Schuyler's. Even that doesn't feel quite right, because it was there from very early on, probably the second trimester or so, a shadow unseen inside her tiny developing mind. She wasn't yet a baby, but her monster was already a monster, only waiting to be brought into this world with the sole purpose in life to bedevil the life of my daughter.

July 7, 2015

Future Perfect

This week at Support for Special Needs:
Excerpt:
I feel fear for Schuyler, so much so that it weighs down on me, probably more than most people realize and sometimes more than I think I can handle. The future is an oppressive thing for me, but every now and then, with Schuyler's help, I can allow myself to imagine that it might not be bad, that she might have a shot at being happy, and maybe, just maybe, so might I.

June 29, 2015

Assembling Schuyler's Armor

Today at Support for Special Needs:
Excerpt: 
When things go wrong, when Schuyler meets up with someone who doesn't understand or care, when she hears the words meant to demean her or is simply treated with disregard, I think I've taken that as a larger affront than it probably is. They're not just hurting her feelings or standing in her way. I think on some level, they're tearing down her world. And that's something I simply can't let go unchallenged.

June 22, 2015

Untold Stories of the Secret Heart

Today at Support for Special Needs:
Excerpt: 
There's so much that Schuyler is going to learn about her emotions, and the emotions of others. There's so much I want to tell her, the lessons I've learned the very hard way in my own life. I want to explain to her that her heart is fragile, but it's also tough, and that may not seem to make sense but one day she'll get it, when she thinks it's too broken to survive until she wakes the next morning and the morning after that and realizes that it perseveres. Somehow I want to tell her that she'll have people in her life who don't like her, and that's just part of life, but the hits that'll leave a mark won't come from them. They'll come from the people she loves, and who maybe even love her, but who won't be careful with her heart.

June 15, 2015

The Freedom of Summer

This morning at Support for Special Needs:
Excerpt: 
Summer is Schuyler's time to be herself. She doesn't know what that means, not exactly, and there is always the possibility of change, something that scares the adults in her life a lot more than it scares her. But given her own space and her own pace, she's got a pretty fair chance of beginning to put all the pieces together, and preparing for the chaotic and unpredictable life that awaits her.

Filing STAAR test results in the appropriate place.

June 9, 2015

Might Have Been

Today at Support for Special Needs:
Excerpt: 
Schuyler is, by a country mile, the happiest human being I know. And it's not because she doesn't know any better. It's because she does. She gets the beautiful parts of the world, while I often only see the pain and the cruelty that it holds for her and for us all, I guess. Schuyler holds on to the aspects of the world that she cherishes, and she tries very hard to throw away the rest. I don't know if that's a plan for success or if it's going to bite her face off one day. I only know that it works for her, and it gets her through days both simple and complicated. 
And I know that in that regard, I envy my daughter very, very much. As I should. As should we all.

June 1, 2015

Transformation

This week, at Support for Special Needs:
Excerpt: 
Because she knows. Schuyler knows she's different. She senses it every time she verbalizes in public and gets that quizzical look from strangers. She absolutely knows it when she orders at a restaurant, her iPad reading her order aloud through a Bluetooth speaker with a crisp English accent, an accent specifically chosen because why not? Schuyler watches the kids around her grasp concepts that she has to work hard to handle, and she knows that this happens, the difference happens, because her brain isn't like everyone else's. In a world of special snowflakes, Schuyler is another thing altogether, and of this she is entirely conscious.

May 25, 2015

The Faith of Monkeys

Today at Support for Special Needs:
Excerpt: 
When you see monkeys travel through the jungle, the thing that is most striking is their speed. They move fast, and when they release their grip on one vine, they are already reaching for another. They operate on faith. Faith that the jungle is healthy and the growth is consistent. Faith that there will be another vine waiting, and they won't reach out and find only air and a long drop to the jungle floor. It's not hard to imagine why parents of special needs kids might envy our monkey cousins and their confidence, and their faith that they won't fall.

May 18, 2015

A writer in the family

Today at Support for Special Needs:
Excerpt: 
These days, Schuyler is interested in writing, which of course makes me happy in the most egotistical and selfish way. She writes, and not just for class but rather because she likes it. She wants to take her imagination and put it into motion. She doesn't usually write about herself or her own life, not just yet. Schuyler creates stories, almost always of the fairy tale variety, and she peoples them with heroes and villains and princes and queens, and monsters. Always monsters, usually antagonists but not always evil. Even now, she understands that sometimes the monsters of the world simply have their own agendas, and they need to be taken seriously.

May 12, 2015

Running the clock

Today at Support for Special Needs:
Excerpt:
We talk about this a lot, and I suppose I write about it pretty often, too. I won't apologize for the repetition; it's the colossal bugbear that haunts our thoughts and disrupts our sleep. Three years. Just three years remain before Schuyler is out of school. Three years to figure out what that looks like. One more year of high school, then two years of senior high. (Don't ask; her school district does things weirdly.) And then she's away, off on the next adventure. What that looks like, no one knows. But it's coming up fast, and that inevitability is beginning to inform more and more of her life.

May 4, 2015

Between Friends

Today at Support for Special Needs:
Excerpt: 
Every now and then, Schuyler has the chance to connect with another AAC user. It doesn't happen as frequently as it once did, and certainly not as often as she would like. She doesn't have many classmates using AAC devices at school now; I think she might actually be the only one in her particular classes. She no longer has her tribe, which I suppose is as expected. She was always going to be an outlier. But when she finds herself with another user, she falls into a comfort zone that I can't even begin to understand in a meaningful way.

April 27, 2015

Tag Out

This morning, at Support for Special Needs:
Excerpt: 
I need to quit worrying about the people who are supposed to be helping our kids but aren't, or about the society that should be opening doors for them but is politely but firmly closing them instead. For just a little while, I need to step away from the fear, and from the sense of injustice and from the feeling that I am growing old at a far too rapid pace and that time is running out for me to be able to fix everything for my little girl before I go, because goddamn it, that's what fathers are supposed to do.

April 20, 2015

The Little Fish

This week at Support for Special Needs:
Excerpt: 
As parents of kids with disabilities, we step up to the big fights, and while they can be exhausting and definitely take their toll on us, I think in some way we prefer them to the alternative. The struggles that truly tear us down and leave us dispirited are the little ones, the tiny indignities that defy our long-developed skills for the Big Fight. They can't be confronted with a sword, and we're not necessarily adequately armed with flyswatters. We fear our children being eaten by alligators, only to discover that they are more likely to be devoured by little fish, one tiny bite at a time.

April 13, 2015

The Invitation Game

Today at Support for Special Needs:
Excerpt: 
Sometimes I learn things about Schuyler the hard way. Important things. Things I feel like I should have figured out by myself. Often they're things she keeps to herself, little pieces of inner sadness that she silently holds in her pocket until the day comes when she hands one to me. I don't think she shares so that I can make those tiny sadnesses go away; at least I hope not, because otherwise I'm failing her miserably. I think Schuyler just wants to be heard, and for her anxieties to be aired once in a while. That seems fair.