That's Not How I Do It
Communicating About How You Want Your Child Cared For

Care Plans, Instructions For Caring For Your Child
All children, but especially those with medical problems need specialized individual care. That’s what we as parents provide. However, we can’t do all of it all of the time. For all of our children there will be a time when you will need someone else to care for your child. It’s not essential, most of the time that your child have things done exactly as you do them. However, given the comfort level of your child, having things done as close as possible to the way you do them is best. I found that the best way to accomplish this was to make out “mom’s care plans”. I had different sheets for different aspects of Kayda’s day or routine. I had a different colour for each-medications were on green paper, feeding on pink, bedtime on blue, etc. On them I wrote out what our usual routine was and any tips I’d come up with to make things work better-like orders for mixing particular medications. Something else that I was able to communicate gently through these instructions were my expectations for Kayda’s care.  Most of important of all to me was that Kayda was not in her bedroom during the day and that she was in the same room with her caregiver most of the time. These things I wrote specifically into her schedule. In this way I wasn’t preaching or being demanding but merely stating what I felt was best for Kayda.

For Kayda, and for most of our children, I felt that she had enough to deal with in everyday life without worrying about what activity was coming next, or where was somebody, was she all alone, etc. So, having caregivers follow as closely as possible her normal routine was in her best interest.

Something else you will probably find, is that when your child is in hospital you or someone you trust will need to be there too. We all have our horror stories of errors made in hospital by people who should know better.  Biggest one to me is the nurses who give meds into the balloon port of the gtube. I always stayed with Kayda in the hospital I did leave 2 or 3 nights when I had no choice due to other obligations but felt horrible about it. When Kayda was in hospital for prolonged periods of time I often hired a respite person to stay with her so I could leave. Why? Well, even though much of her care is “standard” nursing care, most nurses don’t do tube feedings or give numerous meds or tube care, or brace care or, or, or….. on a regular basis. And, I always felt that it was bad enough for Kayda to be feeling sick and be away from home without having to be cared for by strangers. Many people don’t have the luxury of being able to stay with their children in the hospital. Many have other family members who need their care. I felt lucky that I could devote that time to Kayda. If you can’t stay at the hospital with your child, having written out instructions or guidelines of how you do things is a big help.

Please see the following pages for the different ideas of how families communicate how they want their child taken care of:

Care Plans:
Kayda
Drew
Pauli

Care Notebooks
For another way to communicate your child's care please see: http://www.cshcn.org/resources/carentbk.cfm

The Care Notebook and Care Organizer are tools for families who have children with special health care needs. Families use Care Notebooks to keep track of important information about their child's health and care. This makes it easier to find and share key information with their child's care team.