"The magazine actually started quite by accident. I was writing
medical articles for a newsletter associated with a parenting site
that focuses on kids with medical issues (Parent-2-Parent.com). I had
finished three pieces when they decided they were no longer going to
publish the newsletter. People knew I was working on these articles
and kept asking me about them, so I eventually put them up on a little
website. The more I thought about it, the more convinced I was that
there needed to be a space on the internet where we could archive all
of the important knowledge we have gained as parents. Shortly
thereafter, I bought the domain and put up the first edition, in
February 2008. You'll notice that the first edition, and a few of the
editions following, are written mostly by me.
I can't say I really had a great vision. If anything, the magazine
was born out of frustration. I would read print magazines for kids
with special needsor visit websites, and the vast majority of
information was on children with mild disabilities or common
disabilities like autism. I never found a place where I felt there
was significant information about children with multiple severe
disabilities and children with complex medical issues. Also, most of
the articles I read were either written by professionals for
professionals, or were written by professionals for parents. I often
felt that the professionals knew their stuff, but lacked the practical
knowledge that parents have. Parents of children with complex needs
are a wealth of untapped information. I wanted to get everything they
knew into one place, where it could help other parents traveling down
the same path.
Right away we had success. I found out a major children's hospital
uses some of the early articles to help prepare families for certain
procedures. Articles have helped many families fight insurance
battles. In particular, the article on Special Needs Beds has helped
15 families (that I know of) get their beds approved. Our first
editions on mitochondrial disease in 2008 and dysautonomia (also 2008)
provided information that at that time was not widely available.
We've helped multiple kids get a diagnosis, and improved the care of
lots of others. We've helped parents get organized and cope. One of
our authors even got a job, in part because of her writing for the
magazine.
The magazine is 100% volunteer and unfunded. All of the authors
contribute on a volunteer basis. I do most of the technical work. I
have an assistant editor, Shannon Gonsalves, who helps primarily with
copy editing. We don't have a budget. I've chosen not to include
advertising on the site, which means we have no income. When/if I get
more time, I would like to work on developing a non-profit arm that
would fund the magazine and allow us to have some paid help."
**Written by Susan Agrawal of Complex Child Magazine, which can be read at http://www.complexchild.com/. Thank you Susan for providing an outlet for parents with children whom have a multitude of health concerns, and empowering so many. It has been a joy to have seen your work help others, and may anyone who is interested in making this publication even more available, by all means visit this website. **
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