Until your child is old enough to advocate for disability rights, it's your responsibility to do what you can to make the world a friendlier place for people with special needs, now and as your child becomes an adult. There are things you can do right now, in your school or community, with your pen or your pocketbook, that can advance the cause of visibility, research, and rights for our special children.
1
Join the PTA
Your school's parent organization is a great way to get started in fighting for the needs of your child and other children with special needs. Once a month, and through volunteer opportunities in between, you can make it clear that children with disabilities have people who will stand up for them and be involved, and you can make sure that their needs and successes are part of any school discussion.
2
Write a Letter
In many communities, subjects of community concern are debated with passion in the Letters to the Editor section of the local paper. Voices there are sometimes compelling, sometimes strident, but they set the tone and the topic for community conversation. Make sure the concerns of families like yours are included.
Whether it's rebutting arguments that you disagree with or putting forth problems or positive stories, you have the power to raise the profile of children with special needs without ever leaving your computer.
3
Attend Community Meetings
Meetings of the School Board and the City Council are usually open to the public, and so boring that the public would rather do anything than go. Still, if there's a big issue being discussed that affects your child, go and make your voice heard.
Gather other parents whose children have similar needs. It's terrible to feel that you have to be a squeaky wheel to get the grease, but local politicians, in particular, seem to respond to the voter voices that are loudest in their ears. Be such a voice.
4
Run for Local Office
Of course, the best way to increase the volume of your voice is to become one of the decision-makers. Families of children with special needs or in special education may be underrepresented in these groups simply because of the demands of caring and fighting for our kids on an immediate, one-to-one basis. But that leaves our concerns out of the greater scheme of things and allows our communities to overlook our needs.
Having strong parent advocates in positions of power will not immediately change policy, but it will make sure everybody in town knows somebody with a special kid.
5
Start a Local Advocacy Group
If joining existing power structures isn't practical or appropriate for you, start your own. Network with other parents with children in special education, or with a disability similar to yours, and host a get-together. Talking with other parents about their needs and concerns may help you develop a plan of action, and working together to further those goals will help you get attention.
You can start a formal group with the help of your state parent advocacy center, or keep things informal. Either way, there's strength in numbers.
6
Join a National Advocacy Group
Many disabilities have national or even international organizations that work specifically to increase supports, fund research, and enact laws that benefit children and families with special needs. My lists of resources for various disabilities can lead you to one that's right for you, or search the internet with the name of the diagnosis to find who's working for you.
Join these organizations, and help them with your money and time. They pack a punch based on size and visibility, and you can be a part of that. You can also often find or form local groups under their auspices.
7
Write a Blog
It seems like not much of a thing, writing your family's story in pixels and posting it for whoever stumbles upon it to see. But there are an awful lot of powerful parenting special needs blogs out there, and together they form a thriving, intimate, affecting picture of what living with and loving a child with a disability looks like. That's an experience that's been shrouded in silence and secrecy in the past, and this new opportunity for social expression is one we should seize and exploit.
