Parents of children with disabilities face unique challenges in finding useful information related to their child’s disability. Many parents are inundated with information that they don’t need. Other parents, however, are left scrambling to find any relevant information. In addition, the information needs of parents of children may differ greatly considering many factors, such as: their child’s stage of life, their child’s specific disability, and their family’s resources. Parents therefore must create and access their own effective information channels. Listed below are a few steps for parents to follow to help them identify and create such channels.
Tips
1. List current gaps in information or unanswered questions you have regarding your child’s current and future challenges. Are these needs for information about (a) services that might be available to meet your child’s or your family’s needs? (b) more general information about your child’s disability and what the future might bring? (c) current “best practices” or strategies to help your child? Or (d) information you want to share with other family members (for example, grandparents or other children) to help them understand your child’s disability?
2. Using the list as a guide, ask your child’s service providers what are the best sources of information given your child’s disability, their his or her current needs, and future challenges.
3. Think back on your own learning experiences and style. What kinds of information or skills training have you received that were particularly helpful?
4. Reflect on how you receive information in other areas of your life,: what formats (e.g., newsletters, internet sites) are most useful to you?
5. Reflect on your current finances and schedule,: how much time and financial resources can you realistically spend a week, a month, a year on accessing information for your child?
6. From the information, gathered in the first five steps, talk to your child’s service providers on possible strategies, formats, and locations for you to access the best information for your child’s needs. These strategies, formats, and locations should meets your learning style, preferred format, budget and schedule needs on an ongoing basis.
7. Information about disabilities and “best practices” can sometimes be contradictory or based on outdated or unreliable sources. Check the information you gather to learn more about its accuracy. Ask yourself: (a) Is this information available from more than one source? (b) Is the information endorsed by one or more professional associations? (c) Is the information less than 10 years old? Ask your child’s service provider about his or her opinion about the information you have gathered. If he or she is skeptical, that doesn’t mean the information is wrong, but it does mean that you should check further to make sure of its accuracy.