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

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Parent’s Perspective

Abby is a pediatric OT and her blog has oodles of information from therapeutic toys to ipad app suggestions. She also hosts a column on parent’s perspectives. I feel pretty strongly that parents benefit from hearing each other’s stories. So, I’m over there today sharing mine. Please check it out and share Abby’s blog especially with the special educators in your life.

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Sandy Hook

No, I really have little to add to this conversation. It’s too hard and heavy and draining and I think it’s all been said and I’m not sure the internet is always the best place for these conversations. That being said, as a Connecticut native, I know I have New England readers who may not be reading all the same blogs that I love. Allow me to share my favorite responses: Here is a mom...

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How to Use a Runaway Truck Ramp – Book Review

Shawn Smucker is an entrancing story teller. His latest book, How to Use a Runaway Truck Ramp,  beckons you to sit around the campfire and listen to tales of adventure complete with grand scenery, internal conflict, heartwarming characters and at least one death defying experience.  Shawn, his wife Maile who co-wrote the book, and their four young children set out on a four month long road trip on a bus. Yes, the idea sounds a little...

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Becca

At Thanksgiving, the young grown ups took a place in the hot seat and answered questions from the old grown ups. I don’t love this. I’m an introvert who can’t stand being put on the spot. Also, they were making us wait for dessert, which is ridiculous on so many levels. So, my sister Becca and I went together in solidarity. They asked us what we thought was the best quality of the other. Easy…...

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Thankful Thursday – Affirmation

Today I’m thankful for the affirmation that I have great doctors. There can be a rift between patients and the medical community whether it be from fear, communication barriers, or power disparities. Just last week I ran across both a medical professional and another parent who know Dr. Hip who is performing Aidan’s surgery in March. The medical professional assured me of Dr. Hip’s knowledge and experience and the parent spoke of his great compassion....

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Putting on Your Oxygen Mask

    November is over and we’ve already forgotten how stuffed we were with turkey and chocolate. It’s excellent to have a time of year to collectively focus on gratitude, and certainly that’s a quality we try to cultivate at all times. Often it’s the “counting blessings” frame of mind that gets us through difficult times. Many of us are able to find the good amidst even the most painful challenges.   What if our...

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Aidan’s Smile

When I see Aidan smile, I know he understands love and family; he knows who I am; he’s in there. Having a child who is non-verbal is frustrating on so many levels. I’ve often been asked what he understands. Because he doesn’t have a consistent communication method, it’s hard to know. Sometimes people wonder if Aidan recognizes them. Certainly there are professionals in his life that have to “prove” his knowledge and keep accurate data...

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Seven Snippets

— 1 — Have you ever had the philosophical conversation about walking and talking and which is more important and which you could live without? Some parents would not change their child’s disability because they believe it is the unique quality that makes them who they are. I definitely have an opinion on that but, it’s complicated, and there is no “right” answer. Robert Rummel-Hudson writes about this question in regards to his daughter and...

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A Mobilized Community

Do you know how many people die from breast cancer in the United States every year? 40,000. That is 40,000 too many. It’s also just a number. It doesn’t tell the story of lives cut short, family and friends left grieving. It doesn’t speak of the three million breast cancer survivors currently living in the United States who have been changed by their battle. There is good news, however, and it deserves reflection. The good...

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1 in 26

1 in 26 people in the United States will develop Epilepsy at some point in their lives. It’s more common than you may realize. Two-thirds of people living with Epilepsy are able to control their seizures and may not be recognized as having a neurological disorder. Check out this video by the Epilepsy Foundation.   Here’s why it matters to me: