Written by: Stephanie Holland

Why do we need another group?  

It’s certainly a valid question.  There are several national groups that focus on advocacy, and resources for parents and caregivers of the more than 400,000 people who have Down syndrome in the United States.   The number of groups has grown significantly since my son was born in 1987.  
The amount of support available for new parents today compared to those of children born 50+ years ago is impressive.  When you add in the number of groups available online it’s easy to come to the conclusion that one more group is simply redundant.  So why did I start The Road We’ve Shared in January of this year?  As we talk about the resources offered by the existing national groups this month, I’d like to take a moment and talk about how The Road came to be and what we see as our mission.

My Story

My only son was born in 1987, three years before the Americans with Disabilities Act was passed.  I was twenty years old and single.  I had no experience with special needs.  I didn’t even know what Down syndrome was when they told me my son had it.  When a mother whose son was just two weeks older than mine invited me to join a support group she had created I was hesitant to say the least.  I didn’t do groups. 
In those meetings and when I rode along with that family to my first National Down Syndrome Congress conference I was amazed by the bond I felt with total strangers.  At the conference we all looked for the shiny buttons of smiling children that everyone was wearing.  We shared stories in the hallways.  We learned together and became inspired together.  

At home, in my new family of F.R.I.E.N.D.S. I started to open up and share, asking for advice when needed, helping to set up and schedule events when I could.  

Circle of Friends

When the new laws went into effect, we counted on each other as we learned how the details would change our lives.  I relied on other mothers to help me advocate for my son to be transferred out of a special school and into the community.  We were a very close knit group of moms with children around the same age.  That was a special time and I’ll be forever grateful for the experience.  

We had what I call a real community.

As is often the case, life got busy.  I stopped going to meetings and gradually lost track of my friends; but I always knew that they would be there if I ever needed their support.  When Josh reached middle school we moved out of state so that I could go back to college full time.  My plan was to learn what I would need to help other parents navigate the system.  I never got back into the “Down syndrome community” per-se.  

On January 12, 2013 that changed.  I changed.  The Down syndrome community changed too.  It changed because one of our own, Ethan Saylor, was killed.  To me, Ethan was not just another adult with Down syndrome.  He was the beloved son of the mother who introduced me to this community.  He was my son’s childhood friend.  He was only two weeks older than my Joshua.

Ethan and Josh

Ethan and Josh

In the months after Ethan was killed I felt a need to do something.  I reached out to others and got involved in the fight for justice.  What I found left me feeling heartbroken and disgusted at times.  The lack of media coverage was discouraging, as was the lack of responsibility taken by our elected officials. The worst part of all was the realization that attitudes toward intellectual and developmental disabilities really hadn’t changed as much as I thought they did.   The saying, “The more things change, the more they stay the same” kept playing in my mind as I read ignorant and sometimes hateful comments on news articles.  I also ended up feeling lost within my own community.  It wasn’t long before I witnessed the conflicts that often exist among highly passionate people.  I watched with disbelief as people who were brave enough to express their opinion were judged and ridiculed for their views.   I wondered what could be done to rebuild that sense of belonging and support that I once enjoyed around other parents.

My Wish List

I started coming up with a list in my mind of what I wanted.  I went something like this:

  • I want a place where we can share our stories and someone will say “I get it.”
  • I want a place where we can voice our opinions and hear other perspectives without judgment.
  • I want to create a type of social history that records the different experiences of parents whose children belong to the first generation of mainstreamed students.  
  • I want a resource that focuses on issues that are important to parents and caregivers who are past the age when schooling is the main concern.
  • I want to learn what I need to know, as the caregiver of an adult, to help my son be happy and healthy as he ages.
  • I want a strong voice to speak up for our generation when things happen that affect the Down syndrome community (i.e. legislation, advocacy, current events).
  • I want a place where parents of younger children can come for advice, understanding, and inspiration.
  • I want an alliance of parents, caregivers, and self-advocates that providers, legislators, and the “outside world” can come to for input BEFORE they make decisions that will affect our lives.
  • I want someone to keep an eye on the national and international news and share important stories in one, easy to access place. 
  • I want a place where our children don’t have to be cute, overly-friendly, or exceptional for us to feel welcome and successful as parents. 
  • I want a place where siblings and other caregivers feel as valued as parents.

The list continues to grow and has a life of its own, but those are the basics.  I was lucky enough to find two moms (Karen & Mardra) of adults that I came to admire, not because they shared the same views that I did, but because they were always respectful, especially when they disagreed.  I shared my wish list with them and found that they wanted the same things. 

As far as I know, nothing like this existed before January of this year.  That’s why I believe we need another group.  If you want the same things as we do, please join us.  There’s always room for more on The Road!