the effort alone

the effort alone

  A little while ago, I got a letter in my inbox that left me in a puddle of tears: sad ones, happy ones, beautiful, heart-wrenching hopeful ones. The letter wasn’t addressed to me. It was from my friend, Conner, and he was asking if I could pass it on to my dad. It began … Continue reading

what i can

{image is a five year-old photo of me hugging Brooke on the beach. It just felt right. Photo credit: The amazing lens of Connerton Photography, all rights reserved} I’m running late. Brooke is still in the shower. I’m trying to hurry her along without pressuring her too much. “Rushing” is not exactly in her repertoire. … Continue reading

switched on

switched on

{image is a photo of John and me after lunch last week. To find out why we’re laughing, see the photo at the end of the post.} Last week, I had lunch with one of my all-time favorite human beings, John Elder Robison. I always feel so blessed to have time with John. In all … Continue reading

explaining epilepsy 

explaining epilepsy 

Last night, I was on a mission. I wrote to a couple of local listserves asking for their help. All, I’m looking for anything that may help me explain seizures to my daughter. She’s in seventh grade, but text geared toward 1st – 4th grade is probably most accessible. Thanks in advance. Jess I was … Continue reading

just you

Come closer, would you? I have something that I really want to talk to you about but I kinda need your full attention. I know that some of you really don’t buy it when I say that we need not teach our children to hide their autism but instead teach the world to accept autistic … Continue reading

in their celestial kitchen

Monday afternoon. Brooke and I are in the car, on our way home. “Do you remember when Kiki was crying in January?” she asks. I try to call up a script, but come up dry. I’m not sure what my response is supposed to be. “Why was Kiki crying?” I ask. “In January,” she says. Ah, … Continue reading

the garden

The other day, Katie and I were talking about relationships. She told me that she had a friend who has planned out her whole life – when she’s going to meet her husband, when they’ll marry, when she’ll have kids. I smiled. I remember when I too believed that we each have control of such … Continue reading

eyes are ears and other myths

eyes are ears and other myths

Last night, I posted the following on Diary’s Facebook page: Oh, Brooke. I’m so sorry. I saw that worksheet that came home in your backpack. The one on which you’d so diligently parroted back the lessons about what’s necessary to convince people that you’re listening to them, writing in “eye contact” so neatly, right there … Continue reading

representation

representation

{image is the iconic depiction of a hand on which is written the mantra of the disability advocacy movement: Nothing about us without us.} Yesterday, Lydia Brown wrote a searing post about the lack of autistic representation on the Massachusetts Autism Commission. Not only, Lydia tells us, is there only one seat out of 35 held for … Continue reading

whippourwill

whippourwill

{image is a photo of Steven Kurtz at work in the kitchen. He is, of course, smiling.} Oh, hi. You’re still here! That’s awesome. I really appreciate you sticking around, especially because I have a pretty cool story to share. Well, a couple of them actually, but let’s take it one at a time, shall … Continue reading