Monday, June 21, 2010

Care notebooks keep you organized

Today we have a guest blog from Amy Julia Becker, mom to Penny, who has Down syndrome, and William. The white board above is a chart of the things the family was asked to work on when Penny was two. A variety of organizers have been created to help parents keep track of the plethora of information they receive about their child with special needs. Amy Julia writes about a care notebook that was developed at the Children’s Hospital of Philadelphia. If you do a search, you will see that these organizers have been created in a number of places. A Canadian version is available at: The Kit: Keeping it Together. Amy Julia is a writer and a student at Princeton Theological Seminary in New Jersey. At Thin Places she blogs about “theology, disability, children and parenting, education, and the intersection of grief and hope.” Thanks for sharing Amy Julia!
Care notebooks keep you organized
By Amy Julia Becker
I call it Penny’s “Helen Keller moment.”

Remember the scene from The Miracle Worker where Helen Keller understands for the first time that every word has a sign? That language is available to her, and that she can understand and be understood?

For us, it happened when Penny was 15-months old. We’d been working on sign language for months at that point, and she had picked up a few signs through countless repetition. “Food.” “Drink.” “More.” But that day, it was raining outside. A torrential rain, drumming on the slate roof and pooling on the ground. I held her on my hip as we looked out the window. I pointed and said, “Look, Penny, rain.” I wiggled my fingers through the air. She looked outside, looked at me, and signed “rain.” And then I pointed to the big tree. “Look, Penny, tree.” And I signed tree. Again, she looked outside, looked at me, and signed “tree” in a response. Within a month, she had fifty signs and was eager for more. Something had clicked.

Maybe it was destined to happen. Maybe no matter what had preceded it, at around 15-months our daughter would have figured out that every object has a name that she could learn and express. But I don’t think so. I think the only way it happened for her was an intricate combination of therapy, medical intervention and family support.

Only a month earlier, Penny had endured a procedure to close a hole in her heart. Within 24 hours, she was noticeably stronger. She seemed more attentive to the world around her, as if her body didn’t have to concentrate so much on pumping blood and could instead devote some energy to learning. It was her physical therapist who pointed out the difference.

Penny has Down syndrome. She’s had a number of minor health concerns, including mild hearing loss and tubes in her ears, blocked tear ducts, and this heart procedure. She wears glasses and has an Individualized Education Plan and by the time she was two, four different therapists visited our house weekly to teach us how to help her learn. It wasn’t until our son was born that I realized the collaboration required to aid Penny’s development. Where Penny needed repetition and instruction with tasks broken into their component parts, William just did it. I didn’t teach him to roll over. His body took over and there he was, on his belly. I didn’t teach him to keep his drool in his mouth. He simply learned to swallow. With Penny, those things took repetition, and documentation, and instruction, step by step by step.

Kids with special needs don’t need more love than their typically-developing siblings. But they do need more care. Kim Schadt, of the Trisomy 21 Clinic at the Children’s Hospital of Philadelphia, knows these needs firsthand. She grew up with a brother with cerebral palsy, and she has a nephew with Down syndrome and autism.

Kim worked with social workers and other professionals at CHOP to secure a grant for Care Notebooks – binders that provide a way for families to organize medical, educational, therapeutic and personal information in one place. Kim tells the story of her weekend babysitting for her nephew and his siblings. “He has this lizard that he loves and can’t sleep without. And of course, it’s bedtime, and we can’t find the lizard. He’s non-verbal, so he couldn’t tell me where to look. Thankfully, his parents had written in his care notebook where I could find ‘replacement’ lizards, and everyone was able to sleep well that night.”

Care notebooks are a way to acknowledge the intentional and integrated effort it takes for our children with special needs to thrive. The materials to put them together are offered through a number of hospitals. In the CHOP model tabs include “Medical Information,” “Family,” “Education/Family Resources,” “Daily Routines,” and “Insurance/Legal/Financial,” with forms and explanations for what each of those sections should include.

Because we live near the hospital, a social worker was willing to meet with a group of us to instruct us in putting the information together. I arrived with a bag full of papers. The session helped me sort through what was important, what should be filed, and what could be thrown away. Even if you aren’t near a facility that can offers sessions like this, any local Special Olympics or support group for parents of children with disabilities could easily gather for a few hours of social time while hole-punching and sorting through the paper trail.

The task is daunting at first, but once the initial hurdle has been cleared, the notebooks should be easy to maintain. I’m increasingly aware that Penny’s development depends upon medical, educational, therapeutic, and family support. Having a care notebook for her only increases my confidence that she will continue to thrive.


In the work that I did as Parent Co-Chair for the National Institute for Children's Healthcare Quality, we developed a care notebook for families of children with epilepsy. It's an incredibly helpful thing to have and something I encourage all parents to develop, especially early on when their children are diagnosed and they feel overwhelmed with all the information they need.

Thank you for posting this!

I was JUST going through my collection of date books from Gabe's first three years. The first one was FULL of scribbled appointments, procedures, doctors' names, etc. and after reading your post today, I wish I would have had this great idea!

By the way, Amy Julia Becker's whiteboard brings me comfort. At an earlier time in my life with Gabe, I would probably scroll as quickly as I could by that photo. But now, I just "get it", bringing me more to a place of acceptance.

the Portland, OR has a resource like this!

funny, i just found it this morning.