WISDOM
Rights of Parents with Disabled Children

05/26/2012

1.  You don’t have to devote your entire life to the “cause.”  You are free to devote as much as you want or to get away from it for a while.
2.  You need freedom to take your time in deciding what to do.  You have the right to shop around for competent professional help.  You have the right not to accept advice or even comfort, especially from people who say such things as, “You think you have troubles?”
3.  It is all right to intervene, to arrange parties, and to rendezvous with friends on behalf of your child.
4.  It’s all right to consider institutionalization, even if it goes against the current trend toward home care.
5.  You have the right to feel that it is not God’s will, nor is it a punishment.
6.  You have the right to feel that it is God’s will.  (But then you still have to figure out what His will means to you: Does it mean that He would not have given you and your family such a challenge if He didn’t think you were strong enough to handle it?”)
7.  It is your right to consider sending your child to camp for the summer, even if the child does not want to go.  It is amazing how most children end up having a really good experience.
8.  You are entitled to good and bad moods.  You have the right not to be perfect – even to have hostile thoughts – and the right not to act on such thoughts for your own well-being and that of your family.  It’s all right to feel bad and mourn from time to time.
9.  Consider becoming an expert in the disability you are concerned about – even if your motive is initially to help your own child.
10.  Don’t neglect the comfort your religion can provide.
11.  Expect your child to learn to live fully within the family.  You can get help to accomplish this.
12.  Show by example the need to joke, fool around, and be silly.  That’s a safety valve for everyone in the family!
13.  Consider finding out how to get some use out of all the sorrow, whether it is through writing poetry, painting, or understanding the needs of other people in a more sensitive and compassionate way.   Use your tragedy and sorrow constructively, or it will use you.  It can be done!
14.  Become a health nut.  Teach children how to develop healthy life-styles.
15.  Use your experiences to be helpful to other parents.
16.  Be proud of your accomplishments.
17.  There is a powerful need for parents to be on their own, to get away from everything by going on vacations – or just generally doing things – without their children.  No healthy, mature family functions well in a posture of constant togetherness.
18.  Plan times that are special for the brothers and sisters of the disabled child.  Without these breaks, siblings are more likely to resent their responsibilities to their disabled brother or sister.
19.  You have the right to expect miracles.  Why operate on the assumption that our current scope of knowledge is a verdict of doom?
-Sol Gordon, Is There Anything I Can Do?  (New York: Delacorte Press, 1994), pp. 104-105