Posts Tagged ‘autism parenting’
Inside Her Head
Let me tell you something about an Autism Mama. Her brain never stops—not for one single second. All day long, it circles and loops and worries and wonders. It is a flow chart of appointments, and therapies, and specialists, and schedules. A veritable melting pot of hypothesis, and hope—optimism, and sorrow. It moves very, very quickly, this brain of hers. Like a bird alighting upon sunlit branches, it moves from one thought or idea to another. Dinner. The latest research about gluten-free diets. How to stop him from chewing his…
Read MoreBattling the Darkness
There was a time our life changed. We went from ‘typical parents’ to special needs parents. Although I still don’t see the differences. We have a different struggle, but we are still parents. Autism crept into our lives and changed the way we used our voice, while we were fighting for other kids. It sneaked into ours and asked us to use our voice for our own children. Our son was the first to be diagnosed…never did we think we would take the same road twice. I think I grieved…
Read MoreWhat Happens When?
I spent an intense morning with my son Luke at the eye doctor. Honestly, we’ve been frequenting doctor’s offices most days. Yesterday was PT for Ryan my husband, today, eye doctor for Luke, tomorrow and Friday PT for Ryan, Saturday, family doctor for a new wheelchair for Luke… This is life for special needs families. I made this appointment months ago…before Ryan had committed to his new surgery date in Feb…before when the original date was Jan 6 but then Luke was still in PICU and so we rearranged our…
Read MoreBecause, Autism
I must finally admit to myself and the world that I’m tired. Physically and mentally exhausted. For the last 15 years of my 17-year-old son’s life, autism has dictated the mood, comfort, décor (or lack thereof) and decibel level of our home. Severe, non-verbal autism has robbed my son of the ability to communicate effectively or calmly and replaced it with banging, hitting, throwing and aggression. It’s as if my son’s development has frozen in time…demonstrating behaviors matching a two-year-old temper tantrum. No matter the circumstance, he has learned…
Read MoreFire Drills
Hi. My name is Carrie. I have five kids, and my second son has autism. His name is Jack. I’ve come to think of autism as a kind of symphony, if you will. There are loud cymbals, and a quiet tympani. Sometimes, there is a melody, but more often than not, it sounds like chaos. Jack hates fire drills. He always has. For much of his life, he has lived in fear of them. When he was six, he would come off the bus and say the same phrase over…
Read MoreDon’t Count Our Kids Out
Who needs some joy today? This kid had his first school conference in three years yesterday. He’s a big fourth grader now. And like I’ve known all along…he’s amazing. He’s joyful. Happy. Cuddly. Loves giving hugs. So smart. He knows so many sight words and is amazing on his speech device. The goal for me is typing words. I can’t wait until we can have a typed conversation. His bus driver and aide love him. His driver told me he hits the bumps for him because it makes him so…
Read MoreBalancing on a Tightrope
We are on a tightrope… This week my son Cooper had three of his best days ever at school. He is going to be 10 in a month or so and started fourth grade this year. It’s a pretty big deal for him. He also had one very challenging day. Which we are all allowed. Bad days happen. But afterwards, he used his speech device to tell his teacher he was sad. She didn’t know why. I didn’t know why. He is unable to tell us. It’s heartbreaking. And the…
Read More8 Minutes
Just finished carving our masterpieces. Although the repeated freezing did a quite a bit more damage to them than we originally thought. Thanks Minnesota weather. Anyhow, Cooper joined us for 8 minutes exactly. We set a timer. Let’s just say pumpkin nonsense is not for him. And that’s perfectly okay. He wasn’t too into the messiness of the carving but very much enjoyed lighting them up at the end. We got a gasp and a clap. That’s high regards in our world. The baby loved the sharpie marker and Sawyer…
Read MoreBecoming the Mom I Silently Judged
There’s a story I’ve been wanting to tell for awhile, but it’s hidden in shame. The shame is a silent one, as most are. We often hide our dark thoughts because shining a light on them would mean shining a light on all the things we silently do or say or think that reminds us that as humans we are flawed. That’s the thing about shame, in our minds it outweighs our goodness. Even when the scales tip in favor of our goodness, the bricks of judgement and self righteousness…
Read MoreThe Aftermath of an Autism Dignosis
“Mommy, wake up. I love you,” I hear Rhys’s raspy little voice say into the darkness as he holds my face in his hands. It’s before 6am and that champagne from last night is now wreaking havoc on my head. But I open my eyes and pop up to greet Rhys, fueled by this new milestone we’ve reached: saying “I love you.” Both proactively and in the appropriate context. Sure, as parents we all get melty when our children say “I love you.” But when Rhys says it, it’s magic.…
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