One of the first things you learn as a parent of a child with special needs is that you need to advocate for your child. As much as the school districts and professionals are there to help you along the way, you-the parent, know your child better than anyone else. You are just as an important member of that PPT team as the special education teacher, the speech pathologist, and the physical therapist, etc.
There are steps you can take to be a good advocate for your child in and out of the school setting:
1. Get organized
My kitchen cabinets may be a disaster, but I do my best to keep an organized binder of every IEP, status report, medical report, and bit of testing all together. While I don’t consider organization my strong point, I can’t tell you how many times I’ve needed this information and had to have it at a moment’s notice. 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. Commit an hour each month to reviewing your files and ensuring that your paperwork is in order.
2. Educate yourself
When you have a child with special needs, you have to educate yourself on all sorts of topics that parents parents of typical children will never encounter. The best thing you can do when you receive a diagnosis for your child is read all the information you can get and talk to people who know about that particular disability or issue. There are all sorts of online support groups and informational messageboard where you can connect with other parents and ask questions. You also 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 don’t stop asking question until you thoroughly understand. You don’t have to blindly agree to what a doctor, therapist, or school official tells you. Remember, you know your child better than anyone else.
3. Educate others
Depending on the issue or disability, people are going to ask questions or make stupid comments–sometimes really stupid or even hurtful comments that are made with the best of intentions. Although it might feel good in the moment to give a snide comeback, you can serve your child better by taking the time to respond patiently, with the appropriate information. With understanding comes acceptance.
Advocating for your special needs child is one of your most important jobs. It can feel overwhelming and intimidating, but if you remember that you know your child — and his needs — better than anyone, it gets a little bit easier to fight the good fight.
4. Learn persistence
This is a tough one! The school can’t possibly provide a one-on-one aide? No appointments until next year? Insurance won’t cover therapies for children with autism? When you encounter a no, simply keep restating your need, with a smile on your face. The point is to keep trying. If you feel your child desperately needs that one-on-one aide, you make your case at each and every PPT. You have them put it in the PPT notes that your request was denied. Never hesitate to contact local nonprofit organizations, like PATH for help.
5. Remember to care for yourself
Parenting is a tough job in general. Parenting a child with special needs is even more work, and it can be exhausting. If you don’t take the time to take care of yourself, you’ll quickly burn out. You can’t help your child until you meet your own needs. You’re a better parent when you’ve taken the time to care for yourself.