Monday, November 21, 2011


I am working this afternoon on organizing Collin's new therapy program from NACD and realized that it has been a long time since I've written about this hugely important topic. NACD is so ingrained in our life that I hardly think about it as a separate subject anymore, but given the amount of time I've dedicated to poop lately, it seems okay to give a little attention to another part of our daily life.

NACD is an organization designed to empower parents to take the lead in their child's development. It is for children (and more recently, adults) of all abilities, but it tends to draw many families of children with special needs because it provides practical steps to giving your child the comprehensive guidance they need.

NACD believes in brain plasticity and that with specific, intense, and frequent input, nearly any brain (including a damaged brain) can adapt and improve. But once-a-week therapy just isn't enough to bring about this kind of change.  The child's very environment needs to be transformed into one that gives the input needed for development.

When Collin had his initial evaluation with NACD, he was not responding to much of anything. He didn't use his eyes. He didn't react to sounds. He rarely smiled. He was in another world far away from us. It was explained to us that this was because his brain wasn't receiving any input that made any sense. We embarked upon an extremely extensive and intense daily program that involved everything from dark room activities to deep pressure exercises. Within six weeks, he was focusing on lights in a dark room and within the first three months, he had his first ever laugh (a huge developmental milestone) -- not a random laugh, but a laugh at a specific stimulus (the good ol' bulb-syringe-in-the-mouth trick). We were sold, and it has been part of our daily life ever since.

Collin's most recent program is still fairly global in focus, but we concentrate much less on awareness (he's pretty dang aware) and more on organizing specific actions. His "program" -- the complete list of individual activities chosen for Collin's current developmental state -- takes well over an hour to complete and is supposed to be repeated four times a day. Add in potty time, nap time, and meal time, and you have a pretty good idea of what our days are like. We do our best but definitely don't get through everything every day. The great thing is that Collin enjoys most of the program activities required of him. He does log rolls, different kinds of swinging, vision activities, exercises to encourage weight bearing on his feet, and much more. The pictures below are of Collin in the crawler we built per NACD instructions.

We're so thankful to have found this thoughtful and unique group of people (thanks Tina!!!!) who work tirelessly to improve the lives of so many kids just like our Collin the Champ.

Friday, November 11, 2011

And Now We're Done

Some pictures per our discussion in this post.

Monday, November 7, 2011

How Far We've Come

When I get discouraged about Collin's progress, I like to look back and remind myself just how far he's really come. The first picture is from our first month of Aquatherapy back in June 2010. Collin wasn't seizure free yet. He had to be fully supported because he didn't have control over any part of his body. We set goals for him like holding his head up for 5 seconds without support and part of me never believed them.

I'll let the second picture speak for itself.

And here's a little video for good measure:

For Something Different

As you may know, my good friend Sarah has started a smart, interesting mommyblog called Salt & Nectar. She asked me a few questions recently and they are featuring the answers today.

Tuesday, November 1, 2011

Trick or Treat!

Collin was a punk rocker this year. Amazingly, we had a hard time getting his hair to stay spiked.