Category: Guest Post

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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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On Mobility: First Wheels and Jetpacks

A warm welcome to Mary Evelyn’s readers. Thank-you for joining our journey. I would be honored if you read the About Us page to find some of my favorite writings. And to my readers – I’m excited to introduce you to Mary Evelyn of What Do You Do, Dear? I first became intrigued with her blog because her son Simeon also uses a wheelchair but he’s so young! It still blows me away how kids surprise...

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From a Cardiac Nurse

We medical moms know the difference a great nurse can make. Whenever I speak to the Yale pediatric nursing students my first story is about how nurses saved Aidan’s life. I’m pleased to introduce you to my cousin Ruth from Ireland. She’s a cardiac nurse and she is FOR families. ******* I’ve been a paediatric nurse for over ten years now, of which I’ve spent the majority of them working with children with complex cardiac...

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A Guest Post on Parenting and Imperfection

I had my perfect baby first. Liam popped out of me in under 2 1/2 hours, nursed like a champ, and slept through the night at six weeks. As a toddler, Liam rarely pitched a fit, he listened to my directions, and even gave himself time outs when needed. He’s grown into a teenager who helps around the house without complaining, stills enjoys my company, and uses kind words with others….. Read the rest over...