Thoughts on life, disability, and the power of connection.

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Wheels that changed one life

Karen, Aidan’s PT, share a lot of helpful information about what to think about when making a decision to get a wheelchair. Today you can read my side of the story here ***** My son Aidan drives a wheelchair like a boss. He’s 14 years old with a rare genetic disorder and uses both a power chair and manual chair for independent mobility. But he almost didn’t. Because of me. Because it’s complicated. Because it’s emotional. Because...

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My love-hate relationship with wheelchairs

And here again is Karen, Aidan’s PT, to discuss our decision in getting his power wheelchair. It was complicated but there’s lots of helpful information here. Enjoy and stay tuned for wednesday when I tell my side of the story. ***** I lose sleep over wheelchairs. Truly a love-hate relationship. It’s one of my hardest yet best experiences as a pediatric PT. Leading a child and family through the decision-making process for assistive/adaptive equipment is...

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Let’s Talk About Compliance

You read Karen’s thoughts on therapy and functional goals, now you can read mine over at Scatter Joy.   The child is non-compliant. The parents are non-compliant. They aren’t falling in line with what’s been asked of them. The aren’t conforming to the plan. Sometimes those are just thoughts inside a therapist’s head and sometimes they’re written down. While it’s meant to simply be an observation, it’s loaded with shame and guilt and tells only...

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The “So-What” Factor

I’m honored today to introduce you to Aidan’s physical therapist. Karen has been with us since Aidan’s birth. She’s seen us through several orthopedic surgeries, supported him outside the school setting, and has put up with my, um, instense honesty.  ***** “Is this just a “therapy-thing” or is it something functional?” This is a great question, posed to me by a savvy, experienced and weary parent, one who has been involved with a wide variety...

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In The Beginning….at Scatter Joy

 Karen, Aidan’s PT and are sharing blog posts on the same topic from a PT perspective and parent perspective. Join us. You can read Karen’s story of the Family-Therapist dance here. Now it’s my turn… ***** My son Aidan came home from a three-month stay in the NICU with a g-tube, oxygen, and an undiagnosed developmental disability. Then therapists, including Karen, magically showed up on my doorstep. At some point I’m guessing someone explained what PT,...

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First “date” for the family-therapist dance

I’m honored today to introduce you to Aidan’s physical therapist. Karen has been with us since Aidan’s birth. She’s seen us through several orthopedic surgeries, supported him outside the school setting, and has put up with my, um, instense honesty.  ***** Oftentimes, I am the first regular “service provider” a family comes in contact with when they first enter “disability world.” They may have just come home from the hospital after their child’s birth or...

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AAC Happenings

I have some AAC activities to share but first take a look at this video. Check out how Charlie uses his words. Pay close attention to who he speaks with (lots of people), what he talks about (everything), where he has his talker (in a variety of settings). Hence, all the words all the time.   And here are two excellent resources to give your modeling a boost. Take some pressure off of your AAC user...

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On Receiving

I recently found myself recalling our home renovation project to a friend. It made me go back to the Bowie House blog and re-read everything. I still can’t quite believe my community came together to make my home accessible for Aidan. Amazing! I have a few posts I’d like to re-share from those days. Enjoy! ***** In discussing our home remodeling project with a friend, she remarked that I receive with such grace. I know I’ve been...

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Hangers

I recently found myself recalling our home renovation project to a friend. It made me go back to the Bowie House blog and re-read everything. I still can’t quite believe my community came together to make my home accessible for Aidan. Amazing! I have a few posts I’d like to re-share from those days. Enjoy! ***** Nineteen years ago Garreth moved my clothes from one apartment to another while I was taking final exams. We...

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It’s just hair

I got my hair cut before Christmas. Really cut. Super short. I picked Liam up from school and because I’m raising a thoughtful and sensitive male (excuse me while I pat myself on the back) this is how he responded: Liam placed his hand gently on my arm and said, “Mom, you got your hair cut. Is something wrong? Is there something we need to talk about?” Oh that precious boy who thinks a haircut...