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Empowering children with disabilities

 

 
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FAQs: Frequently Asked Questions about Children with Disabilities

Did something go wrong during the pregnancy or delivery to cause this problem?

Prenatal and perinatal complications are some of the most common causes of disabilities. Things such as consuming alcohol or tobacco products when your child is in the womb can be very harmful and can cause things such as fetal alcohol syndrome. Also, while the baby is being born, if it is breeched or has the umbilical cord wrapped around its neck, that can often cut off the baby’s air supply and thus cut off oxygen to the brain, resulting in severe mental retardation or learning disabilities. If you have not experienced any of these scenarios, then it is unlikely that your baby’s disability is due to a prenatal or perinatal cause.

Could this disability have been prevented?
The cause of most disabilities is unknown. Because the causes of disabilities are generally unknown there may not be much benefit to asking “what if” questions or placing blame. The best thing for you and your child is probably to try to focus on the future rather than on the past. 

Does the genetic background of one parent contribute more to the disability than that of the other?
The human body is comprised of millions of things called cells. Inside of each cell are genes, which guide our physical characteristics and how we develop. Each person receives two copies of genes, one from the mother and one from the father. Therefore, children receive half their genetic makeup from each parent. This does not mean, however, that they are just simply a combination of their parents’ traits. This is because of the complex interaction between different genes and between genes and the environment. While most characteristics and conditions have a complex genetic and environmental basis, there are a few traits or diseases for which the role of genes is well understood (Mak, 2002). Therefore, it is not just one parent’s genes that cause their child to have a disability.

Is it safe to have another child?
As said before, the causes of disabilities are generally unknown, so it is nearly impossible to attribute all disabilities to genetics. In cases of things such as epilepsy, it is a result of many genetic and environmental factors working together. If there is a deficiency in a gene, it is mayor may not be passed to the second child. Genetic counseling is available in these situations. 

Can this disability be “cured”? Will my child grow out of it?
Most disabilities can only be treated, not cured. It is best that you try to employ strategies that can help them succeed. The best way to treat any disability is simply by staying positive. For things such as learning disabilities, it is best to find the most effective method to help your child to retain information. Go over tests with him/her, find out what he/she got wrong and what he/she got right, and what strategies helped him/her know right from wrong. It may get frustrating at times, but your child will likely benefit from it.

Do I have to change my goals in life because of my child's disability?
Life goals of parents change with the addition of any new child to their family. The needs and future of the new baby have to be assimilated into the family’s life. Depending on the severity of your child’s disability, you may have to change your life plan and even some of your goals but you don’t have to forget about your goals. There are support services offered to help you with your child’s disability; these services can possibly provide you with more time to pursue your goals. The answer is yes; your life and goals will probably change to some extent because of your child’s disability. It’s important to remember that not all change is bad and that your child, regardless of his/her disability, is going to bring something special and valuable to your family. All that you can do is try your best to keep your family, as well as yourself, safe and fulfilled. As Teddy Roosevelt said: “Do what you can, with what you have, where you are.”

How can we explain the disability to our other children?
It is important that your other children know what caused their brother/sister’s disability; they need to know that they cannot catch it and that they don’t need to worry. Telling your other children the truth may be the best thing to do; pretending that everything is fine may confuse them, making things worse in the long run. It may be beneficial to your children to make sure that they know that the child with a disability is still their brother/sister and is still an important, loved, and valued part of the family. It is generally important for your family to: “enjoy spending time together, talk openly with each other, solve problems together, and show that they love and care for one another” (Turnbull, Turnbull, & Wehmeyer 88-89).

How will my child’s disability affect my other children?
The effects that disabled children have on their siblings are both positive and negative. Some negative feelings experienced by siblings are: “embarrassment, guilt, isolation, resentment, increased responsibility, and an increased pressure to achieve” (Turnbull, Turnbull, & Wehmeyer 88-89). Children can also be positively affected by their sibling with a disability; seeing the positive attitude, courage, and curiosity that their sibling with a disability displays in the face of challenges can inspire your other children. It is important that children feel free to express these thoughts and feelings; it is a good idea to encourage them to talk about their brother/sister’s disability. It may also important to make time for your other children so that they don’t feel as if all of your attention goes to the child with a disability.

Should we belong to some organization? What are the advantages of belonging to a parent group? Are there parent organizations which address our concerns?
There are many benefits in belonging to a parent group. You will get to meet other parents who are going through the same experiences you are, share insight with one another, and have people to talk to when you are feeling hopeless. It’s very important to know that you are not alone. When you are constantly caring for your child it is important to remember that you also need to be cared for, and your concerns need to be addressed. There are parent organizations to address your worst fears. No matter what you may be wondering about your child’s disability, someone has wondered it before, and obtained an answer. You just have to go out there and find it.

What happens if we precede our child in death? Who will care for him?
If you die, and no other family member is willing to care for your child with a disability then the department of social services steps in and decides what should be done next. When they discover an adult or child with a disability who needs protective services they must provide those services (after the individual with a disability consents or they are court ordered). Services covered include social, medical, psychiatric, psychological, and legal services (sometimes, because of limited funds, there is a discrepancy and some argument about which agency/organization should be responsible for funding care). Services can be provided in the client’s home, in the community, or in an institution or halfway house.

 

 
  Helping children, families, and educators in the Frostburg, MD region

This website was created by Frostburg State University Psychology Students as part of the Center for Children & Families.

(c) 2008 by Dr. Megan E. Bradley