September 28, 2016

Limits

Today at Support for Special Needs:
Excerpt:  
I've written many times about my duty as Schuyler's parent to be an overbeliever for her. I still think that's true; indeed, I hold that to be an essential truth more now than ever before. I find that if I believe Schuyler's capabilities reach beyond what we can see in the now, the rest is likely to follow. There was a time when we were told that Schuyler would never be able to write, or use a high end speech device, or even attend school, for that matter. Trying to accomplish more than that was considered overbelief by the physicians and educators and therapists in her life. It's tempting to say that it's a good thing we didn't accept those limits at the time, but honestly, it wasn't even a choice. When your parental instincts call bullshit on expert opinions, you go with your gut. If you're right, boo-yah. If not, you regroup and you go on.

September 21, 2016

Check your local listings, and hold your breath

Today at Support for Special Needs:
Excerpt: 
I feel like there's been a subtle shift in how people with disabilities are perceived in the popular media. I think I heard more about the Paralympics in the media this year than ever before, although still not enough when you consider the extraordinary work the athletes put in. On-screen portrays of people with disabilities are becoming less of a big deal, although again, there's a lot of distance left to cover. And the notorious "R Word" seems to be slowly transforming into, if not a taboo word, at least one mostly perceived as being used and defended by low class persons. Outrage at the mocking of a journalist by a politician probably raised more awareness than all the ribbons and marathons of the past year, so, you know, thanks for that. (I'm hesitant to say his name again, kind of for the same reason I don't look in the mirror and say "Candyman" three times.)

September 14, 2016

Toll

Today at Support for Special Needs:
Excerpt: 
Being a special needs parent is an amazing experience, but it runs a deficit. The obstacles that society throws up. The constant struggle to be taken seriously by professionals and educators and family and, well, the world. The ticking clock that runs out way too quickly on the protective cushion our kid's childhood provides until it very much doesn't. The isolation. The pain and anxiety our children feel and our frustrating inability to explain or make right the things that impair their young lives. They learn to find their way, and we are central to that discovery. But it takes its toll.

August 30, 2016

The invisible monsters who walk among us

Today at Support for Special Needs:
Excerpt:  
Everyone cry out, because such a statement demands outcry. Ann Coulter stands proudly and feeds off of us, a vampire hungry for hate and sorrow and lights and cameras. But we stand up and we push back, because "standard retard" doesn't get to flutter out into the air without being swatted at. It doesn't do any good to protest, but it feels evil not to, so we speak up and then we turn back to our lives, our difficult but rewarding lives. Ann Coulter may be rich and she may be famous, but not one of us in the disability community would trade places with her, not for a moment.

August 24, 2016

Junior

This week, at Support for Special Needs:
Excerpt: 
In years past, her first day of school nerves were pretty epic. This year, it wasn't such a big deal. She got dressed in the outfit she'd been planning for weeks, with her hair newly dyed in a fantastic purple that really has to been seen to be truly appreciated. We sat outside waiting for her bus, and right before it got there, we fired up Pokémon Go on our devices to discover that a Pikachu was standing next to us. If you play the game, you probably understand what a big deal that was, having him standing right there mere feet outside our doorway. (Just go with it, please.) Schuyler was thrilled at her miracle Pikachu. She climbed on the bus, fantastically cool omen critter in virtual hand, and she never looked back.

August 17, 2016

Back to You-Know-Where

Today at Support for Special Needs:
Excerpt:  
Our big plans for the new school year don't always work out, and sometimes they REALLY don't (hoo boy, let's swap some stories!), but what you learn after a while is that it's the small things that sort of anchor the tent in the wind. It's doing that first walk-through where your kid maybe finds the anchor points in the building where they can get their bearings, and you get the sense that perhaps your kid won't get lost on the first day, or at least not on the second. It's that moment when you see another kid greet yours like maybe they might be friends, and they don't seem to have any obvious psychopathic tendencies or visible swastika tattoos. It might just be that small feeling, the one that suggests that this is big, but it's not too big. It's doable.

August 9, 2016

Optimism on the Launch Pad

Today at Support for Special Needs:
Excerpt: 
Because I am who I am, I look at Schuyler's positive new school experience, and I wonder what's the catch. But being an overbeliever in Schuyler sometimes means extending that overbelief to those around her, too. So here we go.