Archive for January 2020
When Parent Turns Into Caregiver
Being a parent is something I always dreamed of. Being a parent meant raising my kids to be great people, to teach them values like kindness and honesty, and hopefully send them into the world as adults who could make a life for themselves. When I was pregnant I imagined their milestones in front of us. Finishing primary and secondary school, hopefully onto college and graduation and lastly a career that they loved and that both challenged and fulfilled them. In the same breath I imagined myself and Brian as…
Read MoreWe Are Not Our Bad Days
We had a tough morning over here. The details don’t matter I guess but after I left him at school, I felt like I had run a marathon. I felt a little bruised…my body, my heart and my ego. I felt sad for him. I hate that he can’t communicate. I felt confused as his mother, and even a little depleted. I felt like I wasn’t enough. Because I don’t have the answers. I don’t know why or even how to fix it. I do my very best to always…
Read MoreImagine Something Hurts
Imagine something hurts. But you can’t tell anyone. You want too. You try even. But it comes out in different ways. Ways that people don’t understand. You try to get attention. But they won’t listen. You scream. You hit your head. Because that’s where the pain is. The screaming makes people frustrated. The hitting makes people stare. You drop to the ground because you are exhausted. You roll. You try to get the pain out of your head by pressing your ear to the cold, cool ground. People stare more.…
Read MoreThe World Outside of Our Home
One of the most amazing things that has happened in the last few months is our son’s desire to leave our home. To go places. To try things. And to communicate about it. We never went anywhere for years. Seven years to be exact. We were always home. Safely inside triple locked doors and fences. We went to therapy, the occasional doctor’s trip, and to see grandparents but that was it. When we did go somewhere we always had to drive the same route. Do the same things. See the…
Read MoreOur Kids are Life Long Learners
If I could go back in time, 6 years ago, and tell myself one thing and one thing only…it would be… Let me paint the picture for you first. I was just given a lifelong diagnosis for my child but no direction on how to help him. I was a scared mama. I was 28. This was my first baby. We lived in rural Minnesota and there was no help. No other kids like our son. I wasn’t hearing positive things either. Instead I was told things like, he will…
Read MoreMaybe It’s About Being Real
I’m the kind of person who is always searching for some big cosmic reason for things. I search for answers. Signs. I think way too much. I wonder why and how. I wonder how it all ends. As I get older, I’m learning that maybe it isn’t so much about understanding why. Maybe it’s about becoming the best version of yourself so you can become the best parent, advocate, protector, and teacher for your child. Maybe it’s about showing the world how amazing life can be when it turns out…
Read MoreThe Goal is Independence
Why do parents like me care so much about therapy? I’ve read some crazy reasons as to why. I’ve heard we are tying to make our kids not autistic. That ones bizarre. I’ve heard we are trying to change them. Suppress them. Even torture them. Equally ridiculous. None of those are true. Not for me at least. I take my son to therapy, day after day, when I should be working or watching my other son play hockey or cleaning my house, for one simple reason. I fight for insurance…
Read MoreThe Things I Took for Granted
There is this saying, and I’m sure most of you in the autism world have heard of it. Something to the effect that “special needs parents have a child in the newborn phase for many, many years longer than most.” I’ve been thinking about that a lot lately. How it’s pretty crushing, but it also couldn’t be more true. My son Noah still cries and screams to communicate most of the time. The only consistent words I would say he has are — “Pete” when he sees him on Mickey…
Read MoreMy Child is Bright
Now, lets rewind to the time my son Danny was born. In the back of my mind I always knew there was something not right. I used my mothering instinct and knew something was wrong when Danny screamed and screamed without being soothed with anything possible in this world as a baby. By the time he was three years old, he had no language, no words, or even nonverbal communication was void. After much advocating, Danny was finally diagnosed at age three. ABA therapy was the best therapy at the…
Read MoreThe First Time The Word Autism Scared Me
I didn’t allow myself to feel any of the emotions that came with his diagnosis. I didn’t walk out of his appointment any different than walking in. It hit me about 3 weeks later. When the letter arrived. At his appointment, we discussed ABA. We discussed the hours. We discussed how we needed this for him to start speech. I walked out feeling relieved. I know that’s a total opposite emotion than you would expect. To me it was finally being heard. Finally getting him the services he needed to…
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