Educating yourself should be the first thing you do after you get a diagnosis for your child. Information and knowledge about your child’s disability will help you when talking with other family members and planning treatment and services with professionals. Here are some tips and guidelines:
- Connect with other parents who have a child with the same diagnosis. We can’t say it enough. Connecting with other parents who are going through the same thing is your best resource. They will be a source of comfort and support. And they will point you to information and services that were helpful to them. If you are in the hospital, ask for help from the social worker. If you don’t have a diagnosis try looking for other parents or parent groups who are dedicated to the same issue your child faces, like tube feeding or seizures, for example.
- Ask doctors and professionals for written information or names of organizations you should contact. Often professionals don’t want to overwhelm you and will wait for you to let them know that you are ready for more details and in-depth information. Speak up right away.
- Ask if there is someone else who can help if the person you are working with seems to be in a hurry or impatient.
- Write questions down for discussing with professionals and other parents. Keep a running list or journal.
- Keep articles and notes. Later, you may want to share information with the professionals working with your child.
- Be wary of people who make definitive statements about the future and what skills your child will or will not be able to achieve. It is difficult for anyone to predict the future and many factors come into play when it comes to what a child will accomplish in her life.
As you search for information, we’ve found there are some key questions to focus on
- How does the diagnosis or disability affect development, learning, movement, memory, and behavior?
- What kind of services or interventions can help a child with this diagnosis or disability?
- What type of professional or therapist has the most knowledge about my child’s area of concern or health condition?
Once you find the answers to these general questions, keep in mind that each child is unique and the condition will probably affect your child differently than someone else’s child. In other words, some of the answers may not apply to your child. Make a list of which answers you think apply to your child and which do not. Once you understand the basics, think of questions you need to ask the professionals and specialists you are working with on behalf of your child. Build a profile of your child by listing her medical conditions and symptoms.
If while you are pregnant you receive information that your baby might be born with a disability there are several things you can do. Use the resources listed in this article to learn about the disability and to find another parent to talk with. Your local ECI program can provide you with more information about the disability and how it might impact your child's development. Although you won’t be enrolled in services until your baby is born, they will explain to you the steps to take to make a referral once that day arrives.
To talk to a parent of a child with the same disability or concern as your child. Request a parent match from Texas Parent to Parent. They also have a list of parent support groups, organizations and resources you may find helpful.
The Department of State Health Services (DSHS) Audio Visual Library offers a lot of information on all aspects of young children with disabilities and early childhood intervention.
The ECI Library Collection, located in Austin, is available to any resident of Texas. Materials will be mailed to anyone in Texas who completes a Statement of Responsibility Form and promises to mail the materials back to the library. Librarians are also available to assist with literature searches. This type of assistance might be helpful if you are looking for journal articles or current information on rare or less common syndromes.
Look to reputable sites for general information about the disability. The American Academy of Pediatrics has a section addressing developmental disabilities. Nationally recognized organizations and university affiliated internet sites are other examples of places to go for reliable information.
The DARS/ECI Directory of Resources can help you find organizations with information about your child’s disability or concern.
After you have digested the basic information, continue to build your knowledge about the condition. Your continuing research may offer you new ideas or perspectives.
Also be sure to read Understanding a Diagnosis and Medical Terms on this site.
Some material in this article was adapted from New to Disabilities?, an article from the National Dissemination Center for Children with Disabilities (NICHCY).