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…
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…
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…
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…
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…
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…
And here I sit again, in my car, crying. This seems to be the place I cry the most. After IEP meetings. After doctor’s appointments. After birthday parties. I usually know when I’m going to end up crying. You see, I’m always prepared. I don’t usually have a choice in that matter. I call it prepared grief. I can see it coming weeks in advance. We have done enough IEP meetings, doctor’s evaluations, and birthday parties that just don’t go the way we planned. This still doesn’t mean that it…
When your child hurts you… It’s happening in homes all over the country. Including ours. What would you do if a random stranger came up on the street and slapped you? Well, depending on how my mood was and how many hours of sleep I got the night before, I assume I’d either call the police or puck them right back. Both are natural reactions. But what do you do when it’s your own kid hurting you? When the frustration of not being understood gets to be too much for…
Most mornings she wakes up around 6am. She enters the playroom and turns on all the lights. She turns them all back off. She turns them all back on. Then she comes to my room. The door is locked with a keypad. She enters 4 numbers. I don’t know which 4 numbers because I’m on the other side of the door. She enters the same 4 numbers again. I know because the pitch of the numbers is the same. And again. Then she knocks. 4 times. Bang, bang, bang, bang.…
Well adjusted, self sufficient, independent women can completely lose themselves to motherhood. Even ones who appear to have it all together. They can also find themselves again. Sleep deprivation presents itself as depression. And marriage problems. And weight gain or weight loss. And a whole lotta other tough words. Sleep deprivation is torture. You must find a way to sleep. Pour your energy into the positive people in your life. Surround yourself with them. Soak up their energy and laughter. Text them. Call them. Invite them into your crazy, weird…
