Food for Thought

Food for Thought – November 24, 2014 Edition

What Big Boys Can Do:

I tossed the book aside and opened another, hoping that this time the “big” stuff would go unmentioned. The pictures were different, but the words were echoes of the same: big brothers doing big boy things. I tried another… and another. It was all the same, a clear message spelled out in primary colors and smudged pastel. Big brothers can walk. Big brothers don’t wear diapers. Big brothers do not do things the way my son does. And I couldn’t stop myself from crying.

Introducing the term “Early Developmental Brain Injury” and a new framework for discussing Cerebral Palsy:

Despite the consensus statement from the 2004 meeting, the disagreement and confusion about diagnosing cerebral palsy continues, filtering down to families and the public. The limitations of the term cerebral palsy and the “wait and see” approach to diagnosing the condition delay the identification and tracking of symptoms beyond motor deficits.

Supersurvivors – by Feldmand and Kravits. This book answers the question we Medical Moms hear a lot, “How do you do it?” The short answer is, “We do what we have to do and you would too.” This book is full of research and compelling personal stories that give the long answer.

Food for Thought

Food for Thought – November 3, 2014 Edition

So here’s the deal: I post just a few things to read each week in case you’re looking for something to read and also because I think they’re important or have moved me in some way. Sharing is caring and all that. I also understand that your time is limited and your reading list may be full. That’s totally fine.

But this week, I’m posting just two articles that left me saying, “Yes. This. Exactly. Preach sisters.” Pretty please read them.

What’s Her Name? – Tanya Marlow at She Loves.

The last time I was at that conference, I came as a speaker. I was the one at the front, and people had looked me in the eye and asked my opinion on matters of theology. This time, even people who had known me for years didn’t recognise me because I was sitting in a wheelchair, and some found it hard to meet my gaze.

False Negatives: Evaluations of Functionally “Nonverbal” Children – Dana Nieder at Uncommon Sense. Make sure you read to the punch line at the end which will leave you banging your head on your desk.

Parents, you cannot believe these numbers….

Not only will believing the numbers send you down some sort of spiral-of-terrible-feelings, but believing them will change your expectations for your child. The numbers will change what you believe your child is capable of, they will plant seeds of poisonous doubt, and they will corrode your ability to presume competence. If you have a child who doesn’t speak, one of your biggest, constant jobs in life will be to advocate for their people to believe in them . . . so if you start to lower your expectations, others will follow.

Plus, really, the numbers are garbage.

And because you took the time to do that for me, I leave you with this bonus picture. Aidan goes shopping with his class and he had to buy himself a snack. He chose well, wouldn’t you say?

Food for Thought

Food for Thought – October 6, 2014 Edition

Letting Go of Guilty: On Folic Acid and Spina Bifida – Mary Evelyn gets her brave on and repeats my mantra that guilt is overrated.

And even as I write this I am tempted to explain– to give an account to anyone out there who might blame me as much as I once blamed myself. I could tell them about the doctors who assured me that there probably wasenough folic acid in my diet alone, or share with them the articles I’ve read about genetic indicators and multifactorial causes. I could build a case to protect myself.

But I am not writing this for the ones who might blame me.

I am writing this for you…..

I am writing this to tell you that you are allowed to let it go.

You are deserving of grace. You are worthy of innocence.

You are not a cautionary tale. This does not have to be your

fault.

A Momentous Joyful Finish – The Barn Project – Many of you know that after Jason LaJeunesse finished our home remodel project, he didn’t skip a beat and went right on to help out our friend Miles and his family. This post is their project recap. If you’re in the Seacoast area please consider using these or these local contractors who gave so generously to our projects.

Brain on Fire – by Susannah Cahalan  – Riveting book about the life changing importance of a proper diagnosis and how patients, family members, doctors, and circumstances collide to save a life. Do yourself a favor and read it.

And my favorite photo of the week – Aidan got to see one of his former teachers that he LOVES this weekend: