When my son was an infant in the NICU, my husband and I quickly learned that we needed to speak up for him. Now that he's six years old and in kindergarten, there's a lot that he can do for himself -- but he still needs us to fight for him frequently. Here are six critical ways we've learned to advocate for him over the years.
Even if every other aspect of your life is cluttered and chaotic, you must create an organized medical file for your special needs child. You really do need every piece of paper that relates to his disabilities, services, needs, and so on. Keep the current year's papers readily accessible in print and digital format, if necessary. Make a monthly stop at an office supply store and use their machines to copy and scan all your information quickly and efficiently. Commit an hour each month to reviewing your files and ensuring that your paperwork is in order.
When you have a child with special needs, you have to educate yourself on a host of topics other parents never encounter. It's unfair -- but they don't get to hang out with your awesome kid, so it all evens out. At any rate, you need to learn about your rights, what you can and can't get for your child, any new therapies that might help your child, and lots more. Be willing to learn, ask questions, and keep asking until you understand. You don't have to blindly agree to what a doctor, therapist, or school official tells you -- you know your child better than anyone else.
People are going to ask questions or make stupid comments. Really, really stupid comments. (Ask me how I know.) Although it might feel good-- in the moment -- to toss off a snappy retort, you can serve your child better by taking the time to respond patiently, with the appropriate information. Ignorance leads to fear. With understanding comes acceptance. That's the world you need to help create.
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