Tuesday, December 17, 2013

Uneasiness, Guilt and Uncertainty

A friend of mine who, like me, has a child with severe disabilities, is having a rough day today because her son has a new nurse. The nurse who had been with him, and had become a part of the family, needed to move on, and through the tears and the goodbyes, a new nurse was found. But no matter how perfect the new nurse seems to be, the first day, the first weeks, maybe even the first month with a new person, we moms stress and worry more than we can say.

As my friend described it, there is uneasiness, guilt, uncertainty and constant second guessing. It's difficult to focus on anything else. And even if the new person is wonderfully skilled, there's still the change, the difference, the newness - all the things that our children with severe disabilities often have a difficult time coping with. It is a situation that happens all too frequently, and one which our children will face the rest of their lives.

So what can we do, if anything, to make it easier, better?

Often we find it difficult to explain the changes to our children. One day a beloved friend is there and the next someone else is there. The person that helps with the most challenging and the most intimate parts of our child's life, the person the child has learned to trust, is one day gone and a stranger has stepped in. It would be nice if we had the luxury of having both people together for a period of time, but insurance and finances usually keep that from happening.

And the issue doesn't just surface when we are replacing one fulltime person with another, it happens when we need backup care for our children. When the fulltime person is sick or wants to take a vacation. The agencies we deal with will send a substitute over, but at least for me, I usually opt to forgo the substitute and take time off from work myself to be with my child. It's just easier for me and I believe for my child to not have to face to temporary changing of the guard.

I don't know how to make these changes easier, how to help my child understand that helpers will come and go. Do you have any suggestions?


schnitzelbank said...

It's hard. I've had to explain to my sons (toddler, preschool) that sitters come and go, teachers, (crazy grandparents just needed to go permanently), etc. It was especially hard when we moved away. So I made my sons a poster with big circles on it. Then we brainstormed all the ppl we love and made cutout pictures of them (photos?). The inner circle goes kids, mom and dad, the dog. We are all constant. The outer ring is the next layer: teachers, sitters. People we love, but they may come and go. The next layer is friends or ppl we love, but don't see as often.
I think the first "loss" was hard for them, but now we speak fondly of Old Sitter and Old Teachers, and they are still in the outermost ring of people: we love them, but don't see as much. I think it's totally okay to let kids grieve this as a big loss. It is to their hearts. Maybe writing old nurse a letter would help. Maybe just talking about her fondly would help?

Ashley's Mom said...

schnitzel, that's a wonderful idea! I'm going to give it a try.