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

April 14, 2014

The Things We Know

Today at Support for Special Needs:
The challenging aspects of being the parent of a special needs kid aren’t always the things you don’t know, although believe me when I say those are bad ones, like "stay up late and start drinking early" bad ones. Sometimes a greater source of parental frustration comes from truly knowing your child, in a way that is simply impossible for a doctor or a teacher or even a family member, and having to work tirelessly to be taken seriously.

April 8, 2014

The Exquisite Joy of Nothing

This week at Support for Special Needs:
This week, we didn’t struggle to understand her, we didn’t have to manage seizures, and there were no bullies to deal with. The Internet wasn’t buzzing with an unusual amount of outrage, and despair felt far away. It was a week where nothing of particular note occurred in relation to Schuyler’s disability. For families of kids with special needs, this can be a rare treat. A week without an easy blog topic is itself worthy of note.

March 31, 2014

The Long-Abandoned Path

Today at Support for Special Needs:
Returning to New England has given me the opportunity to think back on the last 10 years, and to reconsider all the choices that we’ve made, and the paths that we have chosen. That is a foolish endeavor, I know. But just lately, as we prepare for Schuyler to enter high school next year, we are more aware now than ever that the paths we walked down with her did not necessarily lead to unqualified success. It’s hard not to wonder if we could’ve done better for her, which is of course the question that occupies far too much of my mind as it is.

March 25, 2014

Archipelago

Today at Support for Special Needs:
We're already on islands, many of us, but not in a vacation wonderland kind of a way. Our islands aren't floating in a remote blue tropical sea. They exist in plain sight, in the middle of your towns and workplaces and schools. Most of our territories are invisible; you can barely see the fences unless you look closely. And most people don't look that closely.

March 17, 2014

A Genuine Advocate and a Frank Conversation at SXSW

Today at Support for Special Needs:
I’d never heard anyone come out and admit that their company had been spooked by the internal divisions of the disability community and the enthusiasm with which we seem to embrace the concept of the circular firing squad. But it was also deeply depressing to be reminded that the world is watching.


March 10, 2014

Great Expectations

Today at Support for Special Needs:
I’m writing about what I’m feeling here because I think it might be almost as common among special needs parents as that early grieving process. When we buy into a Way That Things Shall Be, it can be hard to let that Way go. Harder than even we realize, because there are so few narratives on which we may depend, and when they disappear, blown away like morning fog, there’s not much in our reserves to take their place. The Way was important, and the Way didn’t work out.

March 3, 2014

Hunting Monsters at SXSW

Today at Support for Special Needs, for those attending SXSW this week and next:
If you were paying close attention back at the top, you saw that I mentioned Schuyler's presence. Yes, Schuyler will be attending both panels, and both conferences. (Only one of them will involve missing any school, in case you were getting ready to deliver a good scolding. A half-scolding will suffice.) Now that she's getting older, when I speak about Schuyler and larger disability issues as well, it feels strange now when she's not there, and not part of that conversation.


February 24, 2014

Help Wanted

Today at Support for Special Needs:
She sees her future work life as an abstraction, probably because at her age, the future seems limitless. She believes that whatever she's going to do with her life is a choice that is firmly in her hands. But for Schuyler, and for kids like her, that future may not actually have that many options.

February 17, 2014

Diversity in Language

Today at Support for Special Needs:
As parents of children with disabilities, we are constantly looking for the word choices that reflect not just our kids’ reality, but also the dignity and the hope and the possibilities that we hold as a kind of sacred trust.

February 10, 2014

Monsters Who Smile

I'm sorry if you're getting tired of this story. I actually wrote this last week. One of the pitfalls of a weekly column, I guess. Anyway, today at Support for Special Needs:
But being Schuyler’s father has also shown me, again and again with stark clarity, that there really are monsters in this world, and some of them smile pretty smiles and take your daughter by the hand if you let them, and God, do I hope I’m alert enough to know those monsters when I see them.

February 3, 2014

You're worth what you're worth.

Today at Support for Special Needs:
My fears for that future, and they are legion, have little to do with what Schuyler will be able to do, or what her worth to the world might be in measurable values. My fear is rooted squarely in those who hold her future success and those of her friends in their hands, and whether or not they truly understand the value of what that means.

January 27, 2014

Transitions

Today at Support for Special Needs:
Special needs parents and their support professionals frequently talk about transitions. They are wildly important. It’s maybe the hardest part for a lot of our kids, and it’s the one that we know they can’t escape. The thing is, it’s the thing we can’t escape, either. Change is coming, as it always is. Sometimes stealthily as if on cat’s paws, but lately, more like a howling wind that drives everything before it.

January 20, 2014

Here Be Dragons

Today at Support for Special Needs:
For the parents of special needs kids who have developmental and communication impediments to independently moving through the world or reporting the troubling things that happen to them, the map of our world is crowded with monsters and terrors and fears. We’d gladly take on all the dragons and the krakens of the ancient world instead.

January 13, 2014

The Simple Story

Today, at Support for Special Needs:
The thing I find sometimes is how much there is to learn in the simplified version she gives back. She doesn't take something complicated and dumb it down. Often, she distills it, tries to break it down to its most elemental parts. When she gets those parts right, it feels like a tiny triumph, not just for her but also for me. Schuyler teaches me to communicate, even as she works hard to learn those skills for herself.

January 6, 2014

One Resolution

Today at Support for Special Needs:
What I’m doing by not saying anything is a form of silent consent. I let a little piece of verbal poison go out into the world because I don’t want to have an awkward conversation with a stranger, or worse, with a friend or family member. I hold myself up as some kind of New & Improved Rob because I don’t say it anymore, but every time it goes past me unremarked upon, all I’m really doing is allowing someone else to say it for me. I feel like that might be a little worse.

December 31, 2013

I will try.

At Support for Special Needs:
I’m not sure I’d call any of these "resolutions". But as we march off into 2014, I will try to be the father that Schuyler needs, more now than ever. I wasn’t ready to take on the life’s work of being a special needs father; I’m not sure anyone ever really is. But it is in the trying that I become a better father, and a more whole person.

December 23, 2013

Christmas Eve Eve


Today at Support for Special Needs:
I mentioned this last year, but one of the things I value the most about a site like this one is how we can come here and be weird. We can find others whose holidays are as atypical as our own, and other families whose traditions are as driven by circumstance as ours. We know the obstacles, and we know how much work has gone in and how much is still waiting in the future. And we understand, in ways we can't describe to typical families but don't need to describe to each other, how deeply satisfying the love we work for and nurture really can be. It's a hard love, and it's the very best love.

Best wishes for the very happiest of holidays
to you and to those you care about!

December 16, 2013

The Buccaneer Life

Today at Support for Special Needs:
The thought of striking out against that, of hoisting a flag of defiance and breaking down some of that restricting world’s walls? That’s some powerful fantasy material for those of us trying to navigate the sweet spot between this rock and that hard place. You don’t have to ask us twice if we would like a turn at the cannonade. Our flintlocks are already loaded.

December 9, 2013

The Hardest Forgiveness

Today at Support for Special Needs:
As parents, we’re probably almost certainly unprepared for the disabilities of our children, at least at first. We go into battle against monsters without so much as a BB gun in our hands. What we discover as we go is that sometimes, we don’t need weapons. We simply need different tools, such as patience, and tougher skins, and ingenuity. And most of all, we need to learn forgiveness, primarily for ourselves.

December 5, 2013

Injustice League

This week (sorry, I forgot to publish this on Monday) at Support for Special Needs:
What I truly want is for my friends to run out of hurts, to have no stories of our community being treated poorly. I want someone to say "I looked up #retard on Twitter, and nothing came up." I want to hear about the organ transplants being granted to patients with intellectual disabilities. I want to hear about how the kids on the bus were kind and the popular middle school girls gave the shy little nonverbal girl at the back of the room a makeover after school and taught her to dance to One Direction. I want to read about kids who are different writing poetry, not suicide notes. I want to read about the community that decided to invest in special education programs, and about the politicians who reach across that aisle to extend basic human rights to the disabled, rather than taking away their "entitlements".