|
|
|
|
Q and A: Understanding Feelings Question 1: How do you get rid of or channel the huge amount of anger you feel when you have to fight the "system" to get the services that your child needs? Recently, a mother wrote to me saying that she felt like she could explode. "I get so drained and discouraged at all the fighting you must do to give your child what he deserves. It just isn't fair!" Response: It sure isn't fair. You have plenty to be angry about. Human hardship is not distributed equally, as Rabbi Harold Kushner wrote in When Bad Things Happen to Good People. I often recommend this little but profound book to the parents of children with special needs. Rabbi Kushner himself lost a child to a rare disease and knows all too well the struggles of parents. I remember myself all too well how angry I was when my son was seven years old. I had a hard time accepting that he would need special services for the rest of his life. I walked around with a chip on my shoulder - ready to rage and ready to cry. If the universe is unfair, it sometimes seems reasonable to become embittered and chronically angry. But most parents don't want to go through life this way, so a new sense of what is fair is needed. Kushner speaks to this ages-old question about justice that appeared in the Bible. He reminds us that "Anguish and heartbreak may not be distributed evenly throughout the world, but they are distributed very widely. Everyone gets his share." Sometimes even the children who are the closest to "normal" but still needing specialized services and programs can be very challenging. Certainly many of us have felt, as you describe so well, "drained and discouraged at all the fighting you must do to give your child what he deserves." It may help you to think about what other feelings you may have besides the anger. Is there fear? Sorrow? Worry? Guilt? What would be there if the anger vanished? Anger, one of the most intense and least understood human emotions, is probably the scariest and most socially unacceptable feelings to own up to. It often arises with the thought, "Why me? Why did this have to happen to me?" Losing something precious hurts and seems unfair. Parents want someone or something to blame. It might be themselves, each other, the doctor, toxic waste, or the local school district. Parents who have children with special needs are trying to make sense out of what has happened - "If we are decent people, how could this happen to us?" Why do we have to push and fight for what seems only fair? Parents need loved ones and friends to allow them to experience anger, to cry, and to scream. Indeed what has happened is terrible, and it makes no sense. Trying to be patient by holding the anger in only prolongs the pain. Resolving anger depends on coming up with a new definition of fairness in the universe. If you believe that the universe is fundamentally unfair, you will remain chronically angry and embittered - walking around "with a chip on your shoulder." On the other hand, many parents have been able to use their anger to activate and energize themselves in the struggle to get the best possible services and education for their child's special needs. In this way parents can actually make the world behave more fairly toward their child. Psychology offers a concept that can give us a handle in
channeling anger into effective assertion - in the case of obtaining services
for a child with special needs. There is a continuum from passive to assertive
to aggressive problem-solving styles. The characteristics of each of various
styles are described by Robert Alberti and Michael Emmons in Your Perfect Right,
a classic self-help book. One mother told me how angry she gets when professionals don't hear and understand her. The problem reminds her of difficulties she had with her mother while she was growing up. Once she could refocus on the love and dedication of the professionals who work with her daughter every day, she was able to calmly and clearly express her thoughts which usually resolves the problem. While these are general considerations, I would recommend that
you channel some of your energy into a parent organization, such as the Autism
Society of America, or the ARC, or UCP, etc. Connecting with other parents who
are either just starting out on this journey or further along can be priceless.
You may also want to channel some of your intense feelings into an advocacy
organization that helps other families. |
|
