Tuesday, December 17, 2013
Uneasiness, Guilt and Uncertainty
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?