I Became a Mom of a Special Needs Child

It’s March and it’s almost time to launch my new company:  Chat Collective.  I’ve traveled to NYC and Washington DC meeting with consultants, testing products, gathering information that I  hope will be helpful to others.

In May of 2000 I became a mom of a special needs child.  I had no idea what to do with that fact.  I had no choice about my situation.  My perfect life was shattered and I was on a roller coaster ride that no one wants to be on.

In the beginning I was filled with fear.  The support system I thought I had turned out to not exist.  Those first few weeks when Graham was in the Neonatal Intensive Care Unit or NICU, were a nightmare.  I had three sons:  Colby was 5, Tysen was 3, and Graham was in a plastic box hooked up to wires and oxygen, fighting for his life.

He was silent.  I worried about that;  why didn’t he cry?  When sound came it was forceful and painful to hear. It was never ending.  I went from wondering if he would ever make a sound to wishing it would stop.  It didn’t.  Not for many years.

Through CranioSacral Therapy or CST, I learned that crying was a form of communication.  Instead of asking Graham what was wrong I began to  ask him “what are you trying to tell me?”  People began to follow my lead and ask Graham what he was trying to say instead of trying to stop the crying.

We were teaching, leading by example and challenging people’s viewpoint of communication. It was the beginning.  Inspiration and hope arose from hearing our stories or watching our interactions.

We were destined t o experience years of pain, frustration,, unfair and unjust treatment, close mindedness, lack of understanding, bullying, and let’s not forget, life threatening situations.

My  husband Greg and I decided early that we would include Graham in everything we could and that our family would carry on with trips to Disney and Cape Cod or Las Vegas  and Graham would just be “one of the boys.”

It took ten years to discover a way he could independently communicate.  That’s a decade.  That’s way too long.  There were  little pieces of information in lots of places.  Many agencies, medical facilities or organizations  with therapists that knew a little bit but no one “go-to” place for communication challenges.  It became my mission find it.  I  soon learned it didn’t exist and so I decided to create it myself.

My experiences, good and bad, are what make me an expert.  I created identification products to get the world to recognize communication challenges as a legitimate problem.  I created the terms nonverbal communicator (nvc) and limited communicator (lc) to shift the way the verbal community thinks about communication.

I believe we all communicate and that it is my responsibility to learn how to talk to each and every person I meet.  I searched for a way that my son could communicate with others and found a device that worked: sometimes.  I learned that technology breaks, a lot.  I learned that you cannot depend on only one communication system and searched for s suitable back up plan.  I looked for 14 years unsuccessfully so I made a communication system myself.

I gathered a team of professionals to develop, test and produce what did not exist before Chat Collective.  I want people of all ages and situations to be able to socialize, engage and connect with their families and their communities.  I want Chat Collective to be that “go to place” I searched for.  A place that connects all of us.  Join me and be a part of the Chat Collective team:  become a Chat Ambassador today and share this link, like us on FaceBook and twitter.

I have learned so much from the connections I have made….I can’t wait to connect with you!  Barb

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One Response to “I Became a Mom of a Special Needs Child

  • Shannon Knapp
    2 years ago

    I share Barb’s belief that you can never go wrong when you assume competence! It leads to respectful communication that may be unique, but is social and informational. I am thrilled she is sharing her ideas with a wider audience!

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