christinamguerrero.com ~ the official site ~
Caring for babies with special needs
Copyright 1996 Christina M. Guerrero, Pathways to Health
Your adorable, cuddly, squirmy newborn baby has finally arrived. But the doctor has also
delivered important news: your baby has a disability.
The next thing you know, you’re surrounded by an army of people who mean well, but
who are able to speak only in acronyms: SSI, IEP, CRC, NBRC. What are they talking
about? What should you do first?
As a parent of a child who has a disability, I would recommend the following:
Start by forming a support group. The news can be overwhelming and having someone
help you, even if they just listen to your feelings, is comforting. Recruit the support of
your mate, family members and friends. Also, find other parents who have children with
the same disability and ask if they would be interested in sharing their experiences.
Learn as much as possible about the disability. Consult your pediatrician, use your library
and contact local and national associations for literature on the disability.
These organizations may have support groups which meet on a regular basis. If you have
a computer, and are online, look for opportunities to communicate with parents and
organizations.
Contact the Social Security Administration to see if your child is eligible for SSI
(Supplemental Security Income). SSI supplements the parents’ or legal guardians’
income, and can be helpful with covering the costs of your baby’s special needs.
Get a copy of “Special Education Rights and Responsibilities” which is published by the
Community Alliance for Special Education and Protection and Advocacy, Inc. It is
important to be familiar with the contents of this handbook, and equally important to
know your child’s rights before he or she starts school, so you can communicate
effectively with special education teachers and mainstream classroom teachers.
Learn about Individualized Education Programs (IEPs). At IEPs, parents, teachers and
educational specialists establish goals for the student and review previous goals. Your job
is to know your child’s strengths and weaknesses and to speak up if you don’t agree with
any or all of the IEP recommendations.
If your baby has siblings, encourage them to share their feelings with you about the baby.
With focus on the baby with special needs, siblings may feel left out, so remember to
validate them and give them quality time too. Find out if your community has a group for
siblings of disabled children and look for books or videos that address the same
issue.
Remember to give yourself a break. Employ a trusted sitter who has the patience and
maturity to care for your child when you’d like to go out. Look into using respite
services, which use a baby-sitter trained in CPR and emergency care to watch your child
for a certain number of hours. When you use up those hours, you pay a percentage of the
wages.
Enjoy your infant as a human being and not just as a child with a disability. Nurturing
your child’s self esteem will pay off when he or she matures and begins to
socialize.
Finally, let your special baby make you a better person. By caring for a child with a
disability, you will learn patience, compassion , empathy and an appreciation for what
you have. If you’re fortunate enough to enjoy good health and complete independence,
it’s hard to complain about your own problems when caring for these special babies who
depend upon us for so much.
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