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

July 28, 2014

The World in a Room

Today at Support for Special Needs:
Excerpt: 
The hard part comes in trying to help Schuyler decide what to give away and what to keep. We stay out of her way, even though honestly, she's not making a lot of progress. But it's up to her to decide, not so much what's appropriate to her age, because her age gives an incomplete picture of who she is and what's appropriate for her. No, for Schuyler, it's a process of deciding what is relevant to her now, to her life at this stage. When she starts high school in the coming weeks, I suspect her choices might change.

July 21, 2014

Eleven Years

Today at Support for Special Needs:
Excerpt: 
Mostly, though, the last eleven years have given me Schuyler. They've allowed me the time to let go of my selfish expectations of who I thought my daughter was going to be, and they've allowed me to adapt and appreciate and unconditionally love the weird and wonderful girl she is. It's the girl she is despite her condition, and because of it. And I'm the father I am because of the many mistakes I've made and the occasional things I've gotten right. None of us in this family are the people we were then. The past eleven years have been a crucible and a wonder. We all bear scars and the remnants of war paint, and we all shine a little brighter when called upon to do so.

July 14, 2014

Schuyler's Sense of Self

Today at Support for Special Needs:
Excerpt: 
It really is a beautiful photo, haunting and sweet. In most of her pics, Schuyler is laughing, and not gently, either. But as she gets older and more secure in her sense of self, and as she continues to construct and deconstruct her personal sense of who she is, the Schuyler she wants the world to know is more nuanced. She's growing up, and she knows it. I think it's beginning to excite her, the knowledge that she's in control of the person she is to become.

July 7, 2014

Independence Days

Today at Support for Special Needs:
Excerpt: 
Watching Schuyler and her friend navigate their shared space was an eye-opening experience for me. I observed the ways in which they connected, and watched them dance around the ways that they simply couldn't connect. It gave me a sense of what a friendship with a neurotypical kid might look like, as well as why it has been so hard for Schuyler to make those friendships work out for long. I don't always have a very good concept of how far Schuyler really is from the developmental norm of kids her age. It's not something of which I should be so ignorant.

June 30, 2014

"Thanks, but..."

Today at Support for Special Needs:
Excerpt: 
Special education is a funny thing. (Not so much “ha ha” funny, more like “Huh, that doesn’t make a lick of sense” funny. Not actually all that funny at all, sorry.) We believe deeply in early intervention and a robust special education system in place from the very beginning, but there’s little agreement on what success actually looks like. And to those of us who live in the world of special education, there are few things that make us at best roll our eyes and at worst lay awake at night than hearing even the most well-intentioned policy-makers and elected officials talk about how they’re going to fix special education.

June 23, 2014

The Gatekeepers of Entitlement

Today at Support for Special Needs:
Excerpt: 
We are so convinced that we have a right to know and understand every single scenario that we see. We are offended by nuance, and confused by invisible impairment. We are the gatekeepers of entitlement (a word that is itself loaded with judgment), and if there's one thing we cannot stand, it's the idea that someone with a disadvantage somewhere is getting something that we don't think they deserve.

June 17, 2014

"Once more, unto the breach..."

Today (a day late, sorry) at Support for Special Needs.
Excerpt: 
We've always advocated strongly for Schuyler to be educated in an inclusive public school environment, even moving to our current city to make sure she'd be able to integrate using assistive technology to bridge the communication gap between her and the typical world. I have to be honest and say that her current school situation is a poor reflection of that goal. There are a lot of reasons for that. It's a complicated situation, which is usually a pretty accurate way to describe the lives of special needs families. There are goals, and there is reality, and if you're lucky they might look a little bit similar. If you're very, very lucky.

June 9, 2014

Flygirl

Today at Support for Special Needs:
I don't think there's anything wrong with letting your kid dream past their disability. If it involves a small lie, I think it's not much different from the Santa story (SPOILER...) or the "anyone can be president" fib. (Watch Fox News for a few minutes, until your eyes begin to bleed, to see how the exception probably illustrates the rule.) Our kids are learning a great deal during their early years. That learning process involves more than finding alternate paths through the world. Kids like Schuyler are figuring out who they are, and how their disability can shape them even as they reject the idea that it should define who they are.

June 2, 2014

A Simpler Season

Today, at Support for Special Needs:
Many of us with special needs kids make noises of outward exasperation at the onset of summer, and we mean it, too. But at the same time, when pressed, I suspect many would admit that we're relieved, too. The schools will be giving us back our kids. Whether those schools have gotten it mostly right or mostly wrong, when we get our kids back for the summer, we leave a great deal behind. We're done, for the time being, with all the complications of negotiating school policy and modified curriculum and imperfect behavioral plans and all the modification required to make our beloved square pegs fit into those educational round holes.

May 26, 2014

Insufficient Instrument

Today at Support for Special Needs:
For a guy who's not too smart, I think I do a reasonably good job of navigating the chaos around me. And yet, it is in respect to the most important part of my world where I think I know the least. Schuyler has always been, and remains today, the central mystery of my life. I think I made peace with that years ago, mostly because it is in the journey to understand her mystery that I've grown the most as a person, and found my closest approximation to lasting happiness. I've accepted that as lucky as I am to have Schuyler in my life, I'm mostly not going to get her.
It's beginning to occur to me that I'm not the only one.

May 19, 2014

The Thin Line Between Wrong and Wrong

Today at Support for Special Needs:
But perhaps more importantly, for special needs parents, it's not always as simply the choice between right and wrong. Sometimes, you just have to shoot for the choices that will probably turn out to be wrong, but just perhaps a little less wrong than others. Less damage to undo, fewer apologies, maybe even marginally more restful nights.

May 12, 2014

Advocacy, with Heart

Today at Support for Special Needs:
There's a balance to be struck, I imagine. We don't want hysterical, emotional professionals (as entertaining as that might sound), nor do we want dispassion. Experience matters, not so much as a driver of curriculum and the approaches taken with individual kids, because the idea that every kid is a unique snowflake takes on a very different and important meaning when it comes to teaching and treating individuals with disabilities. But personal experience makes us better listeners. It makes us more flexible, and it enables us to think on our feet and, perhaps more importantly, to use our intuition to guide us.

May 5, 2014

On Early Intervention

Today at Support for Special Needs:
When Schuyler was born fourteen years ago, she was (perhaps irresponsibly) placed into the hands of two people who lacked even the most basic experience with a baby. To make matters worse, at least one of those people was an idiot. (SPOILER: It was me.) I shouldn't admit how many times I looked at Schuyler and simply said to myself, "Oh my god, I have a baby and she's still alive. This is one lucky damn baby."

April 28, 2014

This Is Only a Test

Today at Support for Special Needs:
In Texas, our kids take the STAAR test, which replaces the TAKS test, which was probably preceded by the CRAAPS test and the BUUG test. I have no idea what STAAR stands for, and I refuse to go look. It stands for "The Test That Will Take Hours and Days of Actual Instruction Away From Your Kid, Stress Them Out In Ways You'll Probably Not Grasp Until They Go Into Therapy or Rehab or End Up on the News With Helicopters Circling Your House, and Provide Politicians With a Way to Sound Like They Care About Education But Most Assuredly Do Not."

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.