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

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Undiagnosed Children’s Day 2016

I threw myself a little pity party in 2011 when all the families with a diagnosis were raising awareness for their children’s syndromes. We were left out so I invented a day, Undiagnosed Children’s Day, and something wonderful happened. I discovered community. I love when that happens, a beautiful synapse. Turns out that our children are known as SWANS (Syndrome without a Name) and have organizations devoted to helping them both navigate the medical system...

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Self-Care during Hospitalizations

I’ve learned a thing or two about how to survive Aidan’s hospitalizations and am writing it down to remind myself as much as to help the next person. It’s a lot, that’s for sure, but the more work I’m able to put in at the beginning, the healthier I can remain throughout. This is not a how to post. Let me start with the punch line: Figure out what you need and do THAT. Here are...

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Three Important Things

I played Christmas songs on the piano today. Yes, it’s April, but Christmas music is my go-to for relaxing music. That and Clementi Sonatinas. I teach piano but I haven’t sat down to play for pure enjoyment in a long time. A friend emailed me last week and listed 3 things she was doing for herself. Then she asked what I was doing for me. Now before we get all excited about how wise and...

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Dear IRS

Dear IRS, I just filed my taxes. I did my very best. It was a lengthy and confusing process so I’d like to give you some feedback for your non-mathy people, the ones who play fast and loose with the letter “y” sticking it recklessly onto the end of any word. The ones who preferred the word problems in math class and really wanted to insert themselves and ask, “Where are you going on this...

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Another Purple Day

Saturday is Purple Day, the day to bring attention to Epilepsy. I should probably say something. Maybe come up with some facts for you, an elevator speech. But Epilepsy is so much more than numbers and figures to me. It’s names and faces. It’s friends who carry around pictures of half of their child’s brain post-surgery. It’s a girl who is taking advantage of these seizure free months to ride a sparkly pink bike. It’s kids...

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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,...