Guilty Pleasures and Lost Weekends

Last night I wrote about how frustrating it is to hear that the people taking your place as the caregivers and safe-keepers of your disabled adult child have not kept their promises. Anyone in my situation knows that when you take time off for yourself or to care for someone other than your child or even to see if some independence might benefit your child…you almost always feel guilty. Even if your presence would not have made a difference or if you could not have done a better job, even if you know that you cannot handle your son or daughter when they misbehave, underneath it all, you feel guilty. When you cannot sleep at night the “what ifs” will run in your head like a chattering monkey. This is not rational but part of being a parent and is somewhat shared by the parents of non-disabled children.

I have often wondered what is different about having a child with autism that sets us apart from the parents of other disabled children. Perhaps I am mostly exposed to particularly pushy parents. Some parents are passive and accept what services they are offered and do not press for more. These families often end up over-extended with adult children living at home with aging parents who are less and less able to care for them. The most common concern of all the parents I speak with is the fear of who will care for their children when they cannot. Who will advocate for improved staff training and job coaching?  Who will see that their adult child is actually physically ill and not just “having a behavior”?  When we hear and read stories of mistreatment and indifference such as abuse in state-run  agencies we become even more terrified.

The problem with fear is that it often breeds even more paralyzing inaction; a terrified person cannot think what to do next. And when your rational discussions produce no results except lip-service, discouragement sets in. Then you have to pick yourself up and calm your thoughts to begin again the fight for what is right for your child.

This is what I will be doing tomorrow. I will attend the quarterly meeting and listen to the plans and hopes for improvement, all the while knowing that after 2 years little has changed. The staff changes and each new person is put forward as the answer to our prayers. Usually this person cannot actually deal with the reality and is gone within the month.  I will say again what should be done and will be assured that they have a plan in place that is going to make everything all right.

Then I will go home and feel guilty that I cannot do it all myself.

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