Posts Tagged ‘Special Needs Parenting’
The 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 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…
Read MoreA Morning in the Life of a Girl with Autism
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.…
Read MoreThe Mystery of Time
My son, when you were little, I would picture your future. Our future really. The beginning was hard. Mama can say that. You didn’t like to sleep. Or eat. Or sit still. Or play. You wouldn’t do any of the things that mama needed you to do either. Stack three blocks? No way Jose. Sit in a circle full of friends and listen to a story? Not gonna happen mama. Instead, you and I would do our own thing. It felt like we were in our own world. Just you…
Read MoreLearning to Lean Into the Fear
Sometimes I will be sitting in my living room, watching my son, and all of a sudden feel fear. It will come out of nowhere almost consuming my thoughts. Paralyzing me. I’ll see a flash of the future. A glimpse twenty years from now. It’s not fear of the diagnosis. Or the label. Not anymore. It’s not fear of being different or standing out. Nope, we embrace that here. And it’s not fear of paving our own path. Because there is beauty in achieving milestones and goals at a different…
Read MoreA Small Glimpse into Nonverbal
I had a nightmare last night. I was stuck at a four way intersection with a dead car battery and people were quickly growing frustrated with me. I opened my mouth to speak, but no words would come. I tried sticking my hands out the window to sign, to make a hand motion that could explain my predicament, but it seemed my brain had stalled just like my vehicle. People honked aggressively at me, motioning that it was my turn to go. I wanted to explain to them, I tried…
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