Advice of a Special Needs Parent

In recent months there seems to have been a huge effort in the media to bring awareness on children with special needs, autism and other such disorders.  From network news stories to newspapers and even printed marketing campaign for Autism Speaks on public transportation and other sources. This is a welcome sight to many to shed light on a topic near and dear to our hearts and in our society.

One such report from the Center for Disease Control in March 2014 estimates 1 in 68 children have been identified with autism spectrum disorder, which is 30% higher than in the 2012 estimate of 1 in 88. Two such articles can be referenced at the end of this blog.

This blog is meant to continue that awareness through another medium and provide an informal point-of-view of a parent to a special needs child which I hope can be used as a resource to other parents who may find themselves in a similar situation. Even if this does not fit exactly, hopefully it provides some deep thought and further ideas, which may help provide a collective feeling of understanding. I just wanted to add a personal touch for others “finding their way” on their journey.

First of all, I am not an expert or clinical in anyway.  I am just a father of a 9 year old who has many complex, integrated conditions of high-functioning autism, ADHD and dyslexia (not officially diagnosed).   There are numerous true experts, specialists, clinics and volumes of internet and printed materials that can be referenced on exact topics and diagnosis.  Special needs and the Autism Spectrum are very broad and complex areas to cover.  From my personal experience, some areas may fit your individual situation and others may not.  As all children are different and unique in their own way, each may also experience different special needs and developmental disorders. Some children may fit exactly into a category and others, like my son, may not fit “the box” perfectly. The volumes of information and data one can research is overwhelming and at times becomes impersonal.  This sometimes leads one to “guess and assume” as many references seem to conflict.

One thing I would recommend for anyone possibly experiencing this journey, or trying to better understand that of a special needs parent, is a poem written in 1987 by Emily Perl Kingsley called “Welcome to Holland” which is referenced here.  You can also do an internet search and get many references to this including a Facebook page and YouTube video.  As one will see, it frames the experience of a parent from the eyes of a traveler “in a different country”.

Additionally, this blog is being written from a father’s point of view.  As my wife likes to tell me, mothers seem to naturally reach out, bond and network for support with other mothers.  Fathers, at least personally, seem to sit back and take it all in. So please revisit this blog frequently where I will try to address and discuss many topics and experiences concerning a special needs parent.

References to CDC studies:

http://www.cnn.com/2014/03/27/health/cdc-autism/

http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

http://www.mayinstitute.org/

http://www.autismspeaks.org

Autism, Father's Perspective, Raising a Child with A Disability