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Spring 99 Table of Contents
Versión Español de este artículo (Spanish Version)
By Lucy Cusick, Parent, Georgia
Reprinted with permission from Parent to Parent of Georgia,
from FOCUS, Summer 1997
…How many times have I thought those words. When Josh was born three months prematurely, I thought if only I hadn't had that decongestant before I knew I was pregnant; if only I hadn't worked so hard; if only I could not feel so guilty! The "if onlys" still drive me crazy. If only we exercised him more; if only we hadn't put him in a power wheelchair; if only we had surgery; if only we hadn't had surgery; if only…
My husband calls this "shoulding on myself." Not a very nice term, but quite accurate. As a mom of an eleven year old with lifelong disabilities, I have decisions to make. (My husband helps too, but often I feel I'm the one that does the doctor appointments, so I'm the one most educated to make the decision.) How do I know what is the right decision? Which class, which surgery, which therapist, which medicine, which doctor… these are often not clear-cut issues. Doctors can advise, recommend, prescribe, but often there are decisions to make with no black and white answers. Parents ultimately make the decisions.
So, as I've traveled in this world of disability, I have several guidelines when making decisions:
1) List the pros and cons, a timpaired but true method of decision-making. Seeing it in writing can help.
2) Think how this decision affects the rest of the family. Yes, daily therapy may be ideal, but other members of the family have needs, too, and there are the small issues of dinner and laundry.
3) "Decide to decide" and don't look back. Make the decision based on the information you have at the moment. Get a lot of information. Talk to other parents with children with similar problems. Take your time. If the decision is a permanent one, i.e. surgery, then make your list, check it twice, check it again and decide. When new procedures come along five years down the road, remember you did the best with what you had. If the decision is not permanent, i.e. which class to fight for, then try not to burn bridges. Try it. You might not like it and want to try another. Don't slam doors that might need to be opened again… And don't "should on yourself".
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Last Revision: September 4, 2003