Parenting Through the Prism of Disability
If you are reading these pages, you know how resourceful parents need to be to cope with the intricate problems of raising children in today’s environment.
Now take your family’s experience and try to see it through the prism of a child’s disability.
In addition to juggling your schedule and your kids’ practices, games, appointments and school days and the yards of paper work that go with it all, add the therapy appointments, IEP meetings, diagnostic dead-ends, hospitalizations and confrontations with bureaucracy that you have had since your child was identified – or maybe not identified – with a physical or cognitive disability.
Color this with a tinge of guilt and a wash of emotional exhaustion.
Parents of typical kids and parents of kids with disabilities have one common attribute that is increasingly important in our cyber-century. That is a well developed right index finger. In other words, a mouse-clicker.
The Internet is probably equal to the printing press in empowering people to gain the knowledge and information they need.
The sharing that it has engendered impels us all to continue the chain of communication. When we find a good Web site, we just can’t wait to pass it on.
For parents of kids with disabilities, there are some basic Web sites that should be part of the vocabulary.
You begin by doing a search by the name of a disability or disease and you will come up with sometimes hundreds of Web sites to explore.
For those with rare, unknown or suspected disorders, the following are a good beginning:
NORD – the National Organization for Rare Disorders - www.rarediseases.org
NIH – the National Institutes of Health – a government agency - www.nih.gov.
These Web sites are frequently mentioned by physicians as being comprehensive and accurate and therefore, trustworthy.
There are others that are more general like the Exceptional Parent magazine Web site atwww.eparent.com . There is alsowww.specialchildren.about.com
For advice on advocacy resources, a very thorough Web site iswww.wrightslaw.com.
Even if your family has not been touched with an identifiable disability, you might want to look at some of these Web sites out of curiosity and for education. Then, at voting time, or when a public issue surf in your community, you can be an informed citizen
on an issue that confronts families who are just like yours, facing the daily grind like you are, but with different ground rules and different outlooks.
How many times have you said "I can’t imagine how they do it". Well, maybe now you can.
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