The sea of information that parents of children and adults with disabilities is deep and overwhelming at times. Yet, there are times when it feels as though there are many things we are missing, or that may exist to help our children but we are just not finding them.
Whether you are trying to navigate at sea, get your boat launched, or your are bailing water out of your sinking ship, there are several things you can do that will help you to organize your thoughts or to regroup so that you can find what you need for your child or adult.
1. Get and read through your child or adult’s medical records. From the records, create a log of items that are important to have at your fingertips. For example, if your child was diagnosed with several conditions, record the name of the condition, the doctor who diagnosed it, and the contact information for the doctor. Make a list of questions that have not yet been answered.
2. Create a log book. Log every intervention your child or adult has already received. Or, if no interventions have started, create the log so that you can be ready to keep track in the future. Be sure to include a column for notes and results of those interventions.
3. Spend some time doing research. Go to the library, and surf the Internet for new information on your child’s condition, news or resources that you have not located in the past. Become a world expert on your child’s condition.
4. Learn common disability terms. It is important to know terms that relate to how services are funded for your child. Visit our Web site for more information.
5. Find a new support group. Visit our Web site to help get you started. If one does not exist for your child’s particular condition, start one or join a group that serves parents of children all kinds of disabilities.
6. Create a written plan. After you have spent time with the items 1-5 above, take some time with your spouse (or if you are single, have a friend help you) to develop what will amount to your own strategic plan for how you are going to proceed to help your child. If possible, go away for a weekend to do this so that you can focus. Your plan should include what services are needed and how you will pay for those services.
Becoming “strategic” about how you are going to approach the many items that are on your list of things to do about your child or adult will help you to keep yourself moving forward. Create a calendar from your plan and check off items as they are completed. Always be sure that you give yourself a little reward for completing tasks at hand to help keep you motivated.