When Baby Isn’t Perfect
-- what to do when your baby has a special need
Expecting a baby is exciting! Usually the news of a pregnancy starts us on a nine-month quest for the perfect crib, the right carseat, a meaningful name, and stimulating toys - even if it isn't our first but maybe our second or third child. By time baby arrives, the nursery is ready, the camera is loaded with film, and relatives anxiously await the call that the baby is here.
Delivery day has an excitement of its own – pain followed by the joy of holding your perfect baby – but what if baby isn't perfect? Joy can turn to despair with the simple words; "There's a problem with your baby." And sometimes those words set a family on a long journey of surgeries, therapy, doctor visits, and early intervention programs.
Sometimes more difficult than all of that is facing the stares of inconsiderate people, answering questions -- sometimes very rude ones at that, and dealing with the prejudice a child faces if he has an obvious disability.
As a birth mother, adoptive mother, and foster mother I've had several children with disabilities including speech delays, ADHD, mild mental retardation, motor delays, and most recently a foster child born with cleft palate and lip, club foot, and missing or fused fingers and toes. Here are some ways we have dealt with the situations that might work for you.
Enlist the support of close friends and relatives. Be as honest with them about the problems and fears as you can. Some of them may not understand or know what to say to you, but others will offer encouragement.
Help siblings know how to answer questions. My children were often asked "What's wrong with her face" by others seeing our baby with a clef lip. They learned to tell adults, "She has a cleft lip" and to tell children, "That's just the way her lip grew but it can be fixed." Teach your children to answer with as little or as much information as you want others to have.
Offer information about your child's problem to those who really are concerned. You will get a lot of nosy questions that don't need answered, but you will also get questions from people who really want to know. Often prejudice and fear is based in ignorance. If you can help those around you, especially in groups/organizations you may be a part of, at church, or your workplace, understand your child's problem, they may become sources of help and support.
Find a support group. Whether your child has Down's Syndrome, a heart condition, or mental delays, you need the support of others going through it or who have already gone through it. If you can't locate a support group, call a local early intervention program or your child's pediatrician for help in finding one. If you have access to Internet, you can also find support there. (For a list of area support groups and organizations go to GVP's Special Needs Resource Listings -- Click Here.)
Contact the local organizations that deal with babies and children up to three who need help. Babies Can't Wait, WIC, Children's Medical Services and others offer therapy, counseling, and help in getting medical treatment. The programs have different names in different states, but your pediatrician should be able to put you in contact with the right ones.
Don't give up your dreams for your child, but adjust them to realistic ones based on your child's abilities.
Forgive those who just don't get it.
Katrina Cassel, M.Ed., lives with her husband, five of their children, and an assortment of pets. She is the author of nine books including: The Middle School Survival Manual (Concordia Publishing House, 2010), The Christian Girl's Guide to Being Your Best (Legacy Press), The Christian Girl's Guide to the Bible (Legacy Press), Just for Me: The Bible, and Just for Me: Friends( Legacy Press). Visit her online at www.katrinacassel.com
This article originally appeared in the September 2010 issue of Genesee Valley Parent Magazine. Copyright 2010.
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