Tagged: awareness

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From the Rooftop

This is a post about Liam, Aidan’s neuro-typical (NT) brother, my first born, the child that made me a mom. Here’s what it’s supposed to say: I’ve always been very conscious that Liam’s life is different; disability effects the entire family. I’ve done my best to give him a full and wonderful life. I signed him up for soccer and baseball and tried to cultivate peer friendships. I make sure we have time together when he...

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Bloggers on Your Marks…

Get set… I believe in the power of story. I believe that change happens when our circumstances become personal and meaningful to others. It’s when you know someone who uses a wheelchair that you are compelled to set up a lemonade stand to buy wheelchairs for kids in developing countries. I believe that stories connect us and help us feel less alone. That moment you read someone’s story and say, ‘Yes, I get it” brings you...

5

I Forgot to Miss You

Dear Epilepsy, I forgot to miss you. You’ve been in our house for over two years now. At first, you were so quiet I didn’t realize you were even there. I had been actively blocking the doctor’s warning that said many kids with neurological impairments will develop Epilepsy. Then there was no denying your presence. So I found my community, other seizure moms who get it, and I may have gone a little crazy. You were...

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Purple Day Fact Three

There are two major groups of seizures; primary generalized and partial. Within those groups there are many different kinds of seizures which are named according to what they do to the brain and body. Aidan has absence seizures which are characterized by staring into space. He also has myoclonic seizures which present as his hands flying out and his legs flexing. Aidan also has complex partials which are very difficult to tell if they are a...

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Purple Day Fact Two

Epilepsy is a neurological disorder. It is NOT contagious. It is NOT a mental illness and it is most certainly NOT any sort of demon possession. This is why it matters to me

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Purple Day Fact One

Approximately 3 million Americans have Epilepsy. That’s more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s COMBINED – yet receives fewer federal dollars per patient than each of these. This is why it matters to me

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Purple Day Fact Four

First Aid procedures have changed over time. When you see someone having a Tonic-Clonic seizure (formerly knows as grand-mal and what is most frequently depicted as a typical seizure) DO NOT put anything in the person’s mouth. They won’t swallow their tongue but they are also not in control of their biting. For the most part, do nothing but time the seizure, call for help if necessary, clear the area of objects the person could...

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SWAN Awards

I was just trying to feel a little less alone and get a little help explaining the myriad of issues around having a child without a diagnosis when I staked claim to an Undiagnosed Children’s Awareness Day two years ago. By asking Dana to join me, what I found was SWAN (Syndromes without a Name) both in the UK and US. Clearly I wasn’t alone. It may seem ridiculous to have another Awareness Day. I’m...

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April 13th

Several years ago I invented Undiagnosed Children’s Day. I just claimed the day, asked people to wear blue, and wrote a little about what it meant to have a child with an undiagnosed disability. Last year, one night before April 13th, I asked Dana to celebrate with me. Nothing like putting another mom on the spot with no time to prepare. She rose to the occasion to continue telling her story. Honestly, I still run...

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Little Professor at it Again

(Aidan had another teaching gig recently with physical therapy students. This is a repost from his gig last year. To read more about Decision Wheelchair check out my turn in a chair, thoughts about the manual chair, and power chair and why even have a wheelchair?) “Gather round and listen up kids.” A few weeks ago Aidan had another teaching gig with a class of physical therapy students. They were learning how to administer a...