Top 10 Tips for Advocating for Your Child With Special Needs
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5. Nurture the caretaker; we are, after all, only human.
6. Share ideas that work for you with other parents of children with disabilities. You might get an idea you had not thought of, and in time you will be surprised at the wealth of experience—and wisdom—you yourself have amassed.
7. Send a congratulatory note to your local elected officials when they take office. Tell them one thing you look forward to them addressing in their respective terms that relates to your child’s or your family’s special needs. Such an acknowledgement lets them know that you as a constituent are invested in their performance, and that they can expect you to reach out if a need were to arise.
8. Go to your local firehouse and precinct; give them a little history of who your child is with a picture of him or her. Emergencies happen, and if they are aware they will be prepared to help our loved ones with care and compassion.
In my personal case, my sons’ diagnosis made it likely that, should an emergency ever present itself, the boys would be resistant to help from first responders because they were not familiar, and they would have a difficult time processing the danger of the situation. The fire chief was receptive to my effort to communicate helpful information, and my comfort level within the community increased.
9. Build your own DNA kit for your child. We must always be prepared. See How to Build a DNA Kit for Your Child for detailed information about creating a DNA kit, how to keep it current, and who should have access.
10. Build a manual on your child; it should include age of diagnosis and process of education, such as early intervention, preschool, school age, class size, related services received, etc. Include medical conditions and prescription drugs taken by your child, including frequency of medication and dosage.
Does this feel a little too corporate, or unachievable in your already frenzied life? Take heart: You can begin by keeping all your child’s paperwork in a big box, and then spend time here and there sorting through it. Ask your partner, a supportive friend, or a family member to help—you’ll appreciate the companionship and assistance, and moreover, you’ll be more likely to keep your commitment if another person is setting aside time.
I opted for a binder with important documents kept safe and accessible in plastic sleeves at the front, but you should choose any means of presentation that works most effectively (and easily) for you.
The work you put into organization on the back end will save you time—and loads of frustation—in countless scenarios on the front end, trust me.