Every parent has expectations about their children’s future. They will, of course, be everything that we’re not and they’ll have everything that we can give them. Many parents indicate that they see themselves in their children and experience their joys as well as their pains. However, if you have a child with a disability, life is very different. Initially, when your child is diagnosed there’s a period of shock often followed by denial. You may also feel that all of your expectations for the future have been shattered by a life-long reality that’s unknown.
A child with a disability changes the dynamics within the family. At times, you may feel pressured and overwhelmed by all of the responsibilities that relate to that child. Everything seems to “revolve” around him because his needs are so great. You may also feel exhausted and find that your other children don’t understand why there’s no time for them. Aside from the significant adjustment to an unknown future, you may feel a tremendous sense of loss.
It’s important to know that your feelings are very typical. Anger towards yourself is part of a growth process that ends with acceptance and a sense of personal understanding. When taking care of everyone else, you may feel guilty about not doing enough and not having enough to give. This feeling is also common and often paired with “what if thinking.” “If I had done this, maybe my child wouldn’t be disabled.” Your emotional journey, which has been compared to a “roller coaster of emotions,” will result in a different perspective on life.
But take comfort that you can learn from a child with a disability. Families learn patience, courage, love and self-sacrifice. No one may choose to have a child with a disability, but the journey brings out the best in every family member.
4 Helpful Tips
- A family is like a mobile. Create a balance so that all relationships are maintained.
- Set aside time to talk to one another.
- You need to take care of yourself and your marriage.
- Don’t be embarrassed to ask for help.
Seek Support
Long Island is very fortunate to have parent-oriented organizations and support groups as well as counseling services for families and individuals. The dialogue within the family will yield important information about what each person needs, whether it be support groups, counseling or individual therapy. For more information about support services, the following sites may be helpful:
- www.nichcy.org/stateshe/ny.htm
- Provides a list of state and parent organizations.
- www.autism-society.org
- Provides information about autism issues.
- www.Theramatch.com
- Provides a free directory of therapists.