Posts Tagged ‘severe autism’
My Son, Always Be Kind
Sawyer could hardly contain his excitement as we entered the gym for his friend’s birthday party. Hockey, basketball, cake and a bounce house. It doesn’t get much better than that in the eyes of a six-year-old. He dropped his present on the table as I checked him in. I caught him just before he ran off. I bent down on my knee to check his shoe laces and give him a quick hug. As I stood up I said the same thing I say every single time I leave my…
Read MoreIt’s the Isolation That’ll Get Ya
For me, as a mom, the isolation has always been the hardest part. We couldn’t go anywhere. And I mean anywhere. We couldn’t go to birthday parties, parks, movies, restaurants, Christmas dinner at a friends house, the grocery store or Target. We couldn’t go to gas stations or parades or swimming pools. Parents of older kids told me to keep trying. Keep going. Keep practicing. Leave if it doesn’t work. But it wasn’t the easy. I couldn’t get him out of the car. I couldn’t get him in the building. If…
Read MoreI Need You To Promise Me
A glimpse inside the secret world of special needs parenting: I was packing for my first trip away from my boys in ages. My husband was watching the game. I was mindlessly throwing stuff in a bag. Rushed of course. Drinking a glass of wine. Worrying. Rushing. I was talking through my time away. The schedule and such. Cooper has speech therapy on Tuesday and Friday. Sawyer has hockey on Wednesday and Saturday. Don’t forget Cooper’s meds. The baby has daycare these days. Don’t forget his butt cream. I was…
Read MoreThe Things We’re Not Supposed to Say
The things we’re not supposed to say. I brought my son Sawyer to skate night tonight. A school event at a local roller skating rink. There was pizza and music and arcade games. Kindergarten through fifth grade. Families. Siblings. So many kids. I laced up his roller blades and watched him be a little boy. Skating way too fast. Being silly. Telling stories. Playfully pushing friends. Dancing. Doing the limbo. He has a social life. Friends. He’s growing up. As I sat there watching, holding my baby tight, I was…
Read MoreThe Worry is Nonstop
We were sitting with the realtor about to discuss what we were looking for in a new home. I know she wanted to know about bedrooms and bathrooms and location. I didn’t care about that stuff. Not really. In the grand scheme of things that stuff wasn’t a priority. “We can’t be near a busy road. The house has to have a fence or the ability to add one BEFORE we move in. And most importantly, we cannot, under any circumstances, be near water. Non negotiable. I worry about windows…
Read MorePlease See The Whole Picture
I share a lot of our struggle. I need it to be seen. It cannot be the part of autism that gets ignored to make others more comfortable. And I feel like so much of severe autism gets minimized. It has to have a voice! I don’t just want people to be aware or accept, I want you to be a voice, an advocate and see the whole picture. You have to see the dark, because it is there whether you want to see it or not. However, with that…
Read MoreStart the Tough Conversations
What is the most difficult, yet important conversation you’ve had around your child’s needs? Maybe it was around medications. Or the decision to have more children. For Jamie and I, it was around forever. It took us years to be able to sit down and rationally speak about it. In the beginning, I’d bring it up. We’d fight. Months later, he’d bring it up after a few drinks, and I’d cry. We could never get on the same page at the same time. I think it had to do with…
Read MoreI Wish I Had a Crystal Ball
When my son was diagnosed with autism over five years ago, I thought it was a race against time. I thought if we did everything all at once, all the therapies and services, we would help him, and he would eventually get back on track. I knew he’d always have autism. I was never one that thought it would go away. But I did think we would help him, bit by bit, and eventually he’d be where he needed to be. Which at the time I thought was alongside his…
Read MoreDare to Believe Mom and Dad
When my son was five years old, we had no good days. We had bad days and okay days. I am scared to admit that because I know someone reading this will judge me. They will say I am a bad mom. Or say I am weak for admitting that. But, if our story helps one person, gives one mom or dad hope, than it’s worth it. When my son was five, he was unable to communicate. He couldn’t tell us if he was in pain, or if his socks…
Read MoreA Magical World
I often say we live in a magical world. My son and I. A world where we communicate with our hearts instead of our mouths. A world full of color and trains. Sometimes it’s upside down, backwards, even inside out in our world. Some days we move forward. Some days we stand still. We celebrate the craziest, oddest things. Things that everyone else takes for granted. Some days I swear we are the lucky ones. Some days I pray for it to get easier. I pray for simple. I pray…
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