Posts Tagged ‘nonverbal autism’
It’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 MoreWhen You Think About Grandpas
When you think about a grandson’s relationship with his grandpa…. I imagine baseballs being thrown. I imagine basketballs being shot. I imagine a little shadow following grandpa around asking nonstop questions. I picture trips to the Dairy Queen for an ice cream cone. I think of hand holding. Snuggling on the couch watching cartoons. Or country westerns. Or the auto channel. In my head I hear stories….‘Back when I was your age.’ I imagine special trips and holidays. I’ll tell you the truth. We got something different. Not less. No…
Read MoreI am a Different Person Since my Son’s Diagnosis
I am sorry I do not return your texts or phone calls. I am sorry I have to cancel last minute or do not make plans as I’ve promised. I’m sorry I am not the same person. Since my son’s diagnosis and his other medical issues, I am not the same person. I have noticed I have lost my spunk. My life is so chaotic. I feel my life is consisted of being on the phone with insurance or doctors. I am traveling to different therapies, five days a week.…
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 MoreWhy I am Thankful for my Special Needs Daughter
I am thankful for my special needs daughter. I should probably clarify. I’m thankful for my daughter…not the special needs. I’m not a parent who says that I wouldn’t make life easier for her if I could. I would. But that’s a topic for another post. Today is about a golden birthday and it’s about being thankful. It’s a lesson that I’ve learned over the years about perspective. Today, November 12th, is my daughter Liz’s 12th birthday! Liz has a rare genetic mutation and along with that has come a…
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