I could only feel was what was missing. I couldn’t hear his voice. I couldn’t smell him near me. There were no more cuddles and no more hugs. That the sensory input of love and family that I had known every day since I born was no longer in my life.
Tag: love
One of the most important things autistic people can offer to parents is interpretation skills. Interpreting our culture, our way of communicating. Preventing misunderstandings. Helping families to learn one another’s languages of love and caring.
Jennifer Byde Myers www.jennyalice.com My son Jack is a long, lean, boy with an odd gait and a subtle smile. His first diagnosis was benign congenital hypotonia, which was later upped to cerebral palsy, ataxia. He added his autism diagnosis just after he turned three, about the same time he began to walk. He can spin a plate over and over again, but he can not yet stab a piece of food with a fork. He straddles the worlds of ‘autism’ and ‘special needs’; stimming, using a wheelchair as necessary when his muscles are too weak, or when the environment is too bustling. He’s a young man of few words, unless he does say something, at which point he is always relevant, and often wry. I’m his mom, so I can generally guess what he needs, but communication is a struggle; it can be hard for him to clearly share what…
Sarah Macleod quarksandquirks.wordpress.com findingmygrounduu.wordpress.com aspergersathome.com “I love you,” I’d say. “I love you, too,” he’d reply, often snuggling into me speaking the sentiment with his body as much with his words. It’s been over two years since we’ve shared that exchange. Two years — perhaps three — since I’ve heard Bryce, my son with Aspergers, now 10, tell me he loves me. I’d be lying if I said it didn’t hurt. If I said that it was just words and that I don’t care about the words, my nose would grow like mad. Truth is, I know he loves me, but I ache to hear him say it again. On a recent night around the dinner table during a visit with my mother, the subject of love arose. Bryce pronounced, “I don’t love anyone.” Now, my mom is hip to the blunt mannerisms of my Aspie son, so she didn’t…
Lindsey Nebeker is one of our community’s most visible activists, speaking out on topics ranging from autism and dating in Glamour magazine, to the need for more safety and support measures for individuals with autism at a recent Interagency Autism Coordinating Committee meeting. Lindsey was diagnosed with autism at the age of two, and began to speak around age four. She grew up in Tokyo, Japan with her younger brother James, who shares the same diagnosis but faces more challenges. She recently spoke with TPGA about her experience growing up as one of two siblings with autism. Tell us a little bit about yourself. How old are you, where do you invest your greatest energies, and when did you first receive your autism diagnosis? I am a pianist/songwriter, photographer, public speaker, and advocate currently residing in the Washington, DC metro area. As a woman in my late twenties, I have…
Alysia K. Butler trydefyinggravity.wordpress.com Last week was special in our house. Last week, my son turned five. So many of my posts are filled with how difficult life is for him. How his autism and sensory processing disorder cause everyday activities to be so challenging. Not today. While I had a corn-free cake cooking in the oven, I wrote down all the amazing things about my son. What makes him a rock star. And what makes me proud to be his mom. He has the most amazing giant brown eyes, and when he looks at you, you get lost in them. His passion for Hot Wheels cars is unmatched. He knows every single one that we have in the house. We have a lot. His memory is impeccable. Ask him what rides we did at Storyland last summer and he’ll tell you them all and where they are in the…
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…
Stacey Ashlund sashlund.posterous.com I have experienced what Slate’s Tim Wu calls That Misery Called Meditation. So much in the press these days claims we should all start meditating, and it has such a positive profound effect. It’s inexpensive, anyone can do it anywhere, and it’s the antidote to our busy stressed-out overly-technical lives. But some of us don’t have time, and most of just don’t want to sit and do nothing — it sounds stupid and boring. We have more interesting things to do with our time. I like Wu’s article because it reads like a male chapter out of Eat Pray Love. Any implications I’d heard or imagined about that self-indulgent woman being a fluffy time-waster who thinks too much, talks too much, and writes too much — as in, “Why doesn’t she settle down and get a real life with a house, a job, a car, etc?,” is…
Kristen Spina http://kristenspina.wordpress.com/ I hang back, following but not too closely, watching my son and his two best friends through the viewfinder, my face hidden behind the awkwardness of a zoom lens. As I watch the boys cross the red wood bridge, I snap half a dozen photos. And then again, as they settle in on the dock, taking turns casting, tossing pieces of bread to a giant turtle bobbing on the lake’s surface. There is little to show here for my son’s differences. He is simply one of the guys, enjoying a bit of freedom and fun on a weekend in the Catskills. I scan the lake and the mountains beyond, the grey clouds sitting low in the sky, and think about how remarkable the scene really is — how its very ordinariness is something to celebrate. I take a few more pictures, then leave the boys to their…