Coping with the News that Your Child has Special Needs
Receiving the News
I remember very clearly the day our pediatrician told me and my husband about our daughter's disability. She had been born eleven weeks premature, and we knew she had suffered some brain damage during the emergency c-section, but despite those facts, we still hoped for the best. At six months old, we knew she was behind developmentally, but we thought it was because of her prematurity. At the doctor's office, however, we found out differently. He told us it looked like she had symptoms of cerebral palsy and that the best thing for her would be to get involved in occupational and physical therapy right away. My husband sat there, stunned. I held my sleeping daughter in my arms with one question racing through my mind. I had to ask, "Does this mean she could be in a wheelchair the rest of her life?"
When he answered, I began to cry and the doctor came over and hugged me and my daughter.
That was nearly five years ago. I did not cope very well with the news. I felt a myriad of emotions - sadness, guilt, overwhelmed, anxious, scared - all of which led me into a state of depression. If I had known then what I know now, I probably would have had an easier time dealing with this news. That's why I'd like to share.
Acceptance of your child's special needs can be very difficult. Every parent wants their child to be healthy and whole. "As long as my baby's healthy" is often what parents say when asked if they want a boy or a girl. When it turns out the baby is not healthy, it can be very traumatic.
The most helpful thing to accept what is going on with your son or daughter is to grieve what your child may never be. One of the things I had to grieve was that I might never be able to see my daughter take her first steps. A parent of an autistic child may have to grieve the loss of their child ever having an in-depth conversation. Depending on the child's disability, the grieving will be different for each case.
During the grieving process, remember that is okay to cry and to feel sad. It's important to feel these feelings instead of trying to stuff them down deep inside, which could ultimately lead to depression, as it did with me. The important thing is to not stay stuck in these emotions.
It's important to keep open communication lines while trying to cope with the news of your special needs child. It's especially important to communicate with your spouse since they are going through the same thing you are. There is a scary statistic out there that says the divorce rate among parents of children with special needs is 90%. Try not to withdraw into yourself and turn away from the person you need the most in order to get through this.
It is also helpful to talk to someone who has an older child with the same disability as your child. It helps immensely to find someone who has gone through exactly what you have gone through. Chances are they have felt the same feelings you're struggling with now. They understand your anger, guilt, fear, and sense of being overwhelmed. If you don't know of anyone who has a child with the same special needs as yours, ask the hospital if there is a support group of some kind for your child's disability. If you can't find a group, there is always the Internet. it is full of groups you can join online and ask questions through message boards.
It's good to stay connected with your friends and family as well but they may not know exactly what you are feeling. If you can't find anyone to talk to, I advise talking to a professional therapist who can help you sort through your feelings.
It is helpful to find as many resources as you can about the special needs of your child. We live in an information age, where it is possible to find information about even the rarest disability. Knowing the facts surrounding your child's disability will help you to ask the right people the right questions. Since you will be your child's best advocate you need to know as much as possible.
There are also books, tapes and Cd's out there in which people share how they have coped with their child with a specific disability. One of the most helpful tapes I found was parents of a 20-some-year old son sharing how they coped with his cerebral palsy through the years. I found it from Focus on the Family.
After you have begun to come to terms with your child's disability, it is good to try to turn a negative into a positive. A good way to do this is by creating awareness of your child's disability. Some ways of doing this could be starting your own blog, getting involved in fundraising and educating others about your child's special needs. As you do this, you will feel like you are making a difference - it not only makes you feel good but it is something that helps your child as well.
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These are all things that have helped me cope with my daughter's disability. Here are some other suggestions:
- Be sure to take care of yourself - make time for you
- Don't be afraid to ask for help
- Ask lots of questions
- Quit feeling guilty - it's not your fault
- Don't compare your child to other children with the same disability or with another healthy child
- Don't keep yourself or your child shut in - go out and find fun things to do
- If you're a person of faith, pray and ask others to pray for you
Please note, I am not a professional in the healthcare system, this article is written purely from personal experience.
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