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?


Waterless ALS Awareness

I believe that everyone has something to give and every gift matters.

If you’ve been hanging around this blog for awhile, you know that our community built us an accessible home addition. It took financers and builders, cleaners and cooks, painters and designers and everyone in between. Our volunteers were aged between four and eighty.

So this week’s Ice Bucket Challenge left me both very excited and a teeny tiny bit frustrated.

First, if you haven’t been on Facebook, people are filming themselves dumping buckets of water on themselves, making donations to ALS foundations, and calling on their friends to do the same. People are talking, money is being raised. That’s the part that has me excited.

Then some people were called slaktivists because they probably didn’t make a financial donation, didn’t quite know much about the disease, or seemed to be more interested in their social media presence then actual fundraising.

Really? Facebook is being used for something great and we need to put a damper on that? Boo hiss.

We absoultely need money to fund research and a cure for ALS and other diseases. Money is essential, but let’s not mistake that for the only valuable contribution. One of my favorite aspects of our building project was seeing so many people give in the way they were able. If we shut out people who are not financially able to give, we’ve lost a great resource and perpetuate some sort of shaming statement about money and worth.

There has been a call to just write a check and skip the water dumping. There is certainly validity to that request but it leaves out one important aspect of this campaign….being seen. Yes, this activity is a gimmick, but behind that gimmick are real people who deserve to be seen and heard and valued. I can imagine what it feels like this week to be a person with ALS and realize that people are talking about your cause, noticing, raising awareness. I can imagine because it’s how I’ve felt on Purple Day, “Look, Epilepsy is getting it’s moment in the spotlight. People care.”

So I’m ready to make my contribution. It’s a cold rainy day outside so I’m not pouring a bucket of water on my head, but I do have something to give….information.

If you’re not really sure what ALS is, read this article which states that ALS

is a neurodegenerative disease that affects nerve cells in the brain and the spinal cord, leading to muscle weakness, loss of the use of arms and legs, and problems with speaking, breathing, and swallowing.”

You can also check out the ALS Association website which defines the disease, helps you find a local chapter, and of course has a link to make donations.

And to put some stories to this disease, check out these personal blogs:

April’s ALS Express, The View from Rick’s Window, OK So Far, and a team of bloggers on MDA/ALS Magazine.

Instead of calling out names of friends to make a donation, I’m calling out all of my readers to just simply click on one of these links and read it. (But of course you can dump water on your head and make a financial contribution if you’d like because I stand by my statement that every gift matters.)

Here’s my last contribution – I’ve sat on this side of the computer screen on Purple Day and Undiagnosed Children’s Day and have watched as Facebook lit up with purple and blue respectively. No one was asked to donate money, but I know that on those days people considered how Epilepsy and other medical challenges really effect a family and told others as well.

They…you are not slacktivist. You are my people and you make me feel less alone, and that my friends, is priceless.




Presumed Competence – College Style

I believe so strongly in families and medical professionals working together that I do my part to make those connections better.

Most recently Aidan and I visited a physical therapy class. They were learning how to administer a motor control test. Scoring a test can be very difficult. They have to take in to account how much the client is able to do alone or what kind of assistance he needs. Without a participant who actually has motor control challenges, tuning in to the nuances of these tests can be very difficult.

Enter Aidan. These students now have a subject they can physically get their hands on who does not have typical motor function.

We’ve been to this class for four years now. It’s exciting for me to see how much Aidan has improved. But this year I was most impressed with the PT students. After interacting with this group of students, I have great hope about the level of compassion and professionalism they will bring to the workforce. Without exception, each student said hello and introduced themselves to Aidan directly. Seems like such a small dignity to give, but there are plenty of people who speak to me instead.

They then asked Aidan to perform a task. “I need you to stand up and take three steps.” Now, Aidan can’t do that all by himself. He needs to hold someone’s hands, but I didn’t tell the students that and they didn’t ask. They gave Aidan plenty of time to process instructions and presumed competence on Aidan’s part, as in, I’m going to believe he can do it unless I have a reason to believe otherwise. The PTs were very patient and tried out different strategies to get him moving. They also played to Aidan’s strengths. Aidan wanted to leave the classroom. He’s quite opinionated these days. So, they let him leave and take his steps outside in the common room. Then he wanted to climb stairs, so the students quickly found the test questions that pertained to climbing stairs.

Toward the end of the afternoon, Aidan did a lot of dramatic sighing because he was so tired. I giggled in the corner while the students worked hard to motivate him. If you want my kid to move, you better give him a good reason. This gave them the opportunity to differentiate between what someone can’t do and what someone is refusing to do.

When we went to Yale this fall to speak to the pediatric nursing students, I was very excited to see that we were in a room where Aidan could drive around. These students also presumed competence, believing that Aidan wouldn’t drive into them. While Aidan didn’t take anyone’s foot out, I hope, he spent quite a bit of time driving into empty tables and chairs. It gives good reason to pause and ask why. Was he a lousy driver after all? They quickly caught on, mostly because of Aidan’s infectious giggle, that he was just having fun. He’s a twelve year old boy and crashing makes cool noises and gives some great physical feedback, and apparently I’m an incredibly permissive mother.

Aidan’s actions deserve our thoughtful reflection instead of a quick fix-it reaction. With all of his adaptive equipment and physical challenges, sometimes Aidan’s behavior is really quite typical.