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

0

Food for Thought

Food for Thought – November 2, 2015 Everything Doesn’t Happen for a Reason So I’m going to repeat a few words I’ve uttered countless times; words so powerful and honest they tear at the hubris of every jackass who participates in the debasing of the grieving: Some things in life cannot be fixed. They can only be carried.  I’ve grieved many times in my life. I’ve been overwhelmed with shame and self-hatred so strong it’s...

0

Happy Birthday

It’s PURA Syndrome’s first birthday. It seems like a strange thing to celebrate – “Hey, I know why my kid is sick!” Before Aidan’s diagnosis, as in, for the first 13 years of his life, we found things to celebrate even when we were struggling. It’s a matter of survival. I believe the Medical Mom’s eye is trained on good things. We got into our groove of living without a diagnosis for Aidan, still feeling...

0

Food for Thought

Food for Thought – October 26., 2015   AAC: Don’t demand prerequisite skills In the last few weeks I have heard from several different teachers that they have been told by others that their student “isn’t ready for symbols”.  I am always shocked that anyone can still say this in 2015 when we moved away from a candidacy model for AAC around 20 years ago. Of Tears and Terrible Sounds (When life is too painful...

2

You Just Bought Speak For Yourself. Now What?

Welcome to the AAC Family! Congratulations on getting your brave on. It’s ok to feel overwhelmed, excited and nervous at the same time. Here’s what I wrote about starting AAC with Aidan. Some of you may be starting this journey without the support of your SLP or education team. I’m so sorry to hear that but here’s my two cents. Yes, professionals bring experience and knowledge to the table but you are driving this bus....

0

Speak for Yourself Sale

It’s time to jump in with both feet. Get off the fence. Take a chance on your child. Give him some words. It’s ok to be nervous and overwhelmed and excited at the same time but don’t miss this half off sale of Speak for Yourself, the app that changed our lives. (I’m not at all affiliated with SfY but I get preachy because it really did change our lives)   Here’s what you can...

0

Food for Thought

Food for Thought – October 12, 2015 The Velveteen Wheelchair Here’s the thing about my son’s mobility device: sometimes, it feels a bit… alive. Alive like something full of memories and joy and trouble. Alive like exploration and adventures. Alive like banging into walls and wheeling into ankles and chasing your dad down the driveway. Alive like crying in front of the FedEx guy, telling him to please take care of this thing that helped my...

2

Thoughts about our 21 Day AAC Challenge

This summer I participated in a 21 Day AAC challenge to encourage use of Aidan’s talker. In the spirit of accountability, or meeting a friend at the gym (I’ve heard people do that) Dana gathered people on Facebook to encourage each other and share their stories. Here’s what I learned during this challenge: 1. We used this opportunity to showcase some of Aidan’s lesser used words. We played reverse hide and seek with Aidan choosing...

0

Both/And Walking

Here’s the story behind this video that I posted on FaceBook yesterday: Aidan got this new piece of equipment on monday and he took to it like a fish to water. Aidan loves to move. He’s had several walkers before but they were cumbersome and he needed a lot of support to use them so they ended up collecting dust. Truth. But Aidan can walk. He’s been able to walk ever since he spent a year on...

0

Summer of Adventure

This was going to be the Summer of Adventure, of Making Memories, or at the very least, Getting Out of the House. Let me start by saying that my threshold for adventure is quite low. While I’m pretty sure my siblings have all jumped out of airplanes and such, I tend to think adventure is sneaking off to the beach alone in the dead of winter while the kids are at school and the toursits...

0

Receiving a Rare Diagnosis

You met Sarah when she wrote this beautiful poem about our PURA gathering. Now here she is again telling the story of her daughter receiving her PURA diagnosis. One year ago today, my life changed. Alvie was two weeks old. Ryan was back at work and Audrey was at the sitter’s. Alvie was sleeping in my arms after nursing. It was the middle of the afternoon and my phone buzzed. I didn’t know the number...