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.