Jess at Diary of a Mom www.adiaryofamom.wordpress.com If you were to sit down and read my blog Diary of a Mom from its inception back in 2008, I’m sure you’d notice some pretty dramatic changes. Many of the words I use and the way I use them have changed. And the change in verbiage is reflective of a change — an evolution really — in my understanding of autism. When Brooke was first diagnosed, I bristled at the word ‘autistic’ when it was assigned to her in conversation. I actually found it offensive. “Person first!” I would shout in my head as I calmly responded, “my daughter HAS autism,” emphatically yet (theoretically) politely ‘correcting’ the perceived gaffe. And then, somewhere along the line, I read THIS: Jim Sinclair’s Why I Dislike ‘Person First’ Language. And something shifted. I had never considered the words nor what they represented from the inside…
Tag: Jess at Diary of a Mom
We’re featuring “Slice of Life” conversations with Autistics of all ages — kids through adults — throughout April’s Autism Acceptance Month Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label. We are the people in each other’s neighborhoods, and the more we know about each other — the more visible autistic people and children are — the more common autism acceptance will be. That is our hope. Because our goal is to show autistic adults and kids being their own awesome selves, today we’re going off-script so we can best feature Brooke — whose mom Jess describes her thusly: “She is a nine year-old girl whose laughter starts at her shoulders, takes her entire body along for the ride, then sets the room ablaze in light.…
Jess at Diary of a Mom www.adiaryofamom.wordpress.com A couple of years ago, I had a pretty incredible opportunity. I’d very recently found my voice as an advocate for my beautiful daughter, then just five years old, and so many like her who struggle daily with the challenges of autism. I had spoken publicly just once before, yet I found myself being asked to guest-lecture to a group of prospective neuro-psychs at MIT. I was terrified, but I knew there was no possibility of saying no. What follows is the post that I wrote about the experience. I share it here for a couple of reasons. Firstly, because I’d be hard-pressed to believe that I am the only one who needs the reminder that as parents, our experiences with our children are just as valid and valuable as the knowledge gained by scientists in a lab – no matter how esteemed…
Jess at Diary of a Mom adiaryofamom.wordpress.com I wonder ~ Do you know that I sneak into your room to watch you sleep, secretly hoping that you might wake up, even for a second? When you do wake up and I’m not here, do you wonder where I am? Do you understand why Mama has to go to work, baby? Do you know that it kills me to leave? Do you know that my heart breaks every single time I get into the car and drive away? Do you know that I think of you every moment of every day? Do you know how desperately I want to restructure your world — to make it less hostile, less foreign? Do you know how hard I try to make things easier for you? Do you know that I would give my right arm to take away your fears? Do you know…
An Open Letter to a Friend Jess at Diary of a Mom www.adiaryofamom.wordpress.com My Dear Friend, I am so sorry for your pain. Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it. I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear. I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time. I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its…