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My wife and I spent the better part of 2004 running the gamut of emotions ranging from angry and frustrated to lost and hopeless.  These feelings were brought on by aggressive and emotional behavioral changes we were experiencing with our son, Dominic, then 3, who by all accounts was a mild mannered, easy going boy.  All of a sudden, he was much more aggressive towards his younger sister and seemingly much more defiant and challenging towards us.  Transitioning to other locations would be emotional to the point of vomiting on his part and frustrating on our part.  So we stopped going to family functions.  His temper tantrums became increasingly more explosive and emotionally charged.  These outbursts usually required me to bear hug him until calm, which left him and I both frustrated and in complete tears. 

This would occur 3-4 times a day and by day’s end left us completely drained!  Nothing left! Except for the nagging question, “WHAT IS WRONG WITH MY CHILD?”  How can we help him get through whatever it is he is going through?  He clearly needed help.  We could sense him “crying out to us” but we didn’t know what he needed.  The one thing we were certain of however is that we could not continue on this way.  Something had to give; we had to right this ship.  No more, “Oh, it’s terrible twos” or “Oh, it’s just a phase.”  NO! NO! NO! There is something drastically wrong with my child, drastically!  We were also noticing developmental differences between the two children, and between his peers of the same age.

So, we started doing some research.  We came across an article on SPD.  This seemed to be Dominic.  Now, armed with knowledge and a refusal to accept NO, we demanded he be evaluated for SPD to which his doctor referred us to a specialist.  His official diagnosis was “Mixed Expressive/Receptive Language Disorder Apraxia Sensory Integrative Dysfunction & Hypotonia.  We received this diagnosis in MARCH of 2005.  The diagnosis was bitter sweet.  On one hand, we were relieved that we were not crazy and that we now had something tangible to target.  On the other hand, we were rocked and quite honestly, scared, due to all of the uncertainties that lie ahead.  

As prescribed by the specialist, we enrolled him in preschool and a variety of therapy – speech, occupational and physical.  The services we needed were difficult to get!

Dominic initially tested out of range for services with the Intermediate Unit. Intermediate units provide special services as needed by the educational community in their service area in Pennsylvania.  When he finally did get OT services, they were in preschool and really just consultations; no hands on therapy that he actually needed.  There were periods where we would be without OT because of various insurance issues. 

As I mentioned, we noticed developmental delays that affected his physical activity in “typical” childhood activities as well as motor skill issues.  Dominic also developed tactile sensitivity and other adversities along the way…  However, through all of the various therapies he has actually received, including home based therapy, Dominic is now able to wear Polo shirts, ride a bike and initiate meaningful conversation.  He is able to sustain a long weekend from school without it completely throwing his system out of whack.  He is able to grip a pencil and write his name properly.  You can see that therapy really does work!!!

Then, I think it may have been September of 2007, we heard about the Autism Speaks walk in Philadelphia.  We felt it would be a fun time and a worthy cause!

The day trip down to the city was an amazing experience.  To see that many people who came together for this disorder was truly a moving experience.  However, it made us realize something that we had always kinda knew and kicked around…  There was nothing like that for us!  There were no walks or even groups that we KNEW of for families dealing with SPD.  We knew of no organizations or meetings or what have you for all of us to get together and share our stories.  Anyone we met who was also dealing with SPD was just that – someone we just happened into or met at therapy.  But still, no formal gathering to network.  So, we knew clearly that this had to change. 

 To us, Dominic and his disorder were and still are our entire lives.  With that, we formed DominicsDreams with the goal of education, creating a network of advocacy and support for these children and their families and really trying to get the word out there about SPD.  It is real!  Also, on that same day, I developed the idea of creating a calendar, using my talents as a formally trained professional photographer. 

Little did I know I was to be producing the first ever SPD calendar and what that really meant.  Nor did I have the inkling of where it would take me.  Through the calendar promotion and some facebooking, I met Carrie Fannin, SPD Parent Connections Host, Redmond, WA and Founder of Sensory Planet, who quickly became a friend and an incredible source of encouragement and inspiration.  After talking with her several times and communicating via email, etc, I was ready to take on the world as an advocate for my son and the SPD community.  With my son as my guiding light, I set out to do just that. 

Fastforward to present day…

I have recently returned from Seattle when I shot for a 2010 SPD Awareness calendar; this fundraising project will also benefit the SPD Foundation and is being produced by the local SPD Parent Connections group in Redmond.  I have held several speaking engagements and fundraisers for my foundation and for the SPD community.  I am currently working on a book.  We are hot off the heels of our first annual Making Sense of Their World’s Community Awareness event featuring a “local heroes” softball tournament.  This event received front page coverage in the local Sunday paper.  We also received a visit from Pennsylvania State Representative Tom Quigley.  While currently working on my own SPD photo book, I also volunteer my services for many organizations including Autism York, an autism advocacy group, with whom I am shooting a billboard for! 

My goal is to keep pushing forward every day, keep working hard to get the word out about SPD; help get families to know what SPD is and where they can turn for help and support.  Education is truly empowerment, knowledge is the key.  Had you have told me 2 years ago that in two years I would have spent at least 30 mins with a state representative, telling him my story, our story, would I have believed it?  You bet!  I have never lost focus on the goal.  I did not know of the various forums and other resources and support groups when we first started our journey, but I am going to work to make sure others do.     

When we put our minds and our hearts together, we can move mountains!

To learn more about me and my endeavors, please visit the following websites:

www.bmengini.com        www.dominicsdreams.org