Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Saturday, September 17, 2011

Susan Agrawal and Complex Child E-Zine: Bringing a Powerful Voice to the Special Needs Community

"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 (  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 

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 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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