An Army of Special Needs Moms

Today’s Voice of the Arc is from Rachel Nemhauser, an Outreach and Advocacy Coordinator at The Arc of King County. Rachel recently joined the staff of The Arc, and she is a parent of a child with a disability, too. 

The first time I when out to dinner with a group of parents who have children with disabilities I was actually surprised to notice the moms were smiling and laughing.

After three draining, difficult, traumatizing years of raising Nate I had assumed my days of silliness, fun and friendship were officially over. I imagined my future held only sad, stressful, desperate get-togethers with other sad, stressed out, desperate parents like me.  Seeing that I might smile and laugh with friends again – that I could laugh at all with a disabled child at home – pretty much changed everything.

For three years Nate’s delays had slowly revealed themselves, one after another, like ants from a hill. First he was late to crawl, then to walk, then to talk. His play skills were behind.  His adaptive skills weren’t emerging. His behavior and social interactions were challenging. There was no name for what he had and no explanation for his delays so I spent three denial-filled years trying desperately to believe he would catch up.  I was not the parent of a child with special needs, I told myself daily.  I’m not meant to be this.  I don’t want to do this. And since I was determined to not be the parent of a special needs child, it was obvious I didn’t need the support that actual special needs moms needed.  I didn’t need to connect with other moms and I didn’t need help because this was temporary.

Except it wasn’t temporary, and Nate never caught up.  After three years I finally came to some level of acceptance and admitted to myself that I needed support.  Thanks to the invitation from a friend, I decided to attend a Mom’s Night Out with a group of moms of children with disabilities.  Expecting a prolonged venting-session complete with whining, tears and miserable desperation, I was surprised to find a group of moms who, like me, were excited to be out to dinner with other grownups! They were cracking jokes, bragging about their kids, and giving advice about behavior problems. They were updating each other on life events, medical procedures and marriage woes. They were recommending good doctors and dentists, and even hairdressers familiar with working with our extra-wiggly kids.

That night I shared the most exciting news in my world: At three years old Nate had recently said “mama” for the first time. To a group of moms of typical kids this is happy news, if not a little surprising. To this group, it was time to celebrate.  They understood what “mama” means when you’ve waited three years to hear it. They cheered me on and celebrated Nate’s accomplishments as only they could. In short, they “got it” and it felt so good.

From then on connecting with other parents became crucial for me. I needed to check in regularly with this army of other parents. They were part of my new life and were where I turned to find the support, insight, perspective and humor that I couldn’t always get from the rest of the world. I needed to learn from those more experienced than me, and eventually I needed to support new moms who are where I was 7 years ago.

Today I no longer resent thinking of myself as a parent of a child with special needs. I don’t know if I was meant to do this, but I do know that I can do it. And I’m grateful for those laughing moms from so many years ago who showed me with their smiles that my future would still be joyous and full of laughter.                

Parent to Parent at the Arc of King County is here to help connect parents to resources, information, and most importantly, other parents.  Contact Rachel at Rnemhauser@arcofkingcounty.org or call 206-829-7046 for more information.

Our abiding connections – It is a small world after all!

Written by Sylvia Fuerstenberg, former executive director, The Arc of King County

The XIV Dalai Lama said “Our ancient experience confirms at every point that everything is linked together, everything is inseparable.”

I often find myself in awe of the web of connections we create throughout our lifetimes and surprised by how often those web of connections overlap when I least expect them to!

It started last week at the Legislative Forum, when I get to see people that have been part of my professional life, many since 1987 when I moved back to Washington. One of the many connections I have made is a man named Herb.  Herb, who spoke at the forum and

happens’ to be a gentleman with Down syndrome, was on the interview committee for my first Executive Director position here in Washington.  It is always just a joy when he and I run into each other – which happens from time to time as we live in the same neighborhood. I count as beloved the many people with disabilities that I have had the joy to stay connected with through a couple of job and life changes.  Herb was at my wedding shower and I think a baby shower too and now those babies are grown-ups!   I value that connection.  I can say, “We knew each other when……”

Over the last few decades and as friends and colleagues retire, I worry about the potential loss of connection. A few of my colleagues and I have made a commitment to intentionally connecting once a month. This reassures me that the relationships I have with people who are important to my life and my history will continue to play a role as our lives change.

We have all lost connection with people who were important to us at one point. I believe we all have stories about how some long lost friend or two found us on Facebook or LinkedIn. I have my own stories about those as well, from high school friends to old boyfriends. Am I really that old that I can say “back in the good old days”?   Years ago if you drifted from place to place, exploring this wide country and traveling for school or  work – you could easily lose touch with people over too many transitions.  Now, with help from the internet, we can reconnect– sometimes with great joy and other times, not so much.  It’s great to be connected with people who have known me since I was young and wild and maybe a little more adventurous..!

I made a promise to myself a couple of years ago that I would work harder to stay connected to the people in my life that matter.  There is nothing more important than our connections to others and especially to the people we love and who love us.

I see myself as part of an intricate web.  from Herb to the friends over the years that weave in and out of my life, and who may weave in and out of yours, too. You just never know how else we could be connected!).

Here is my challenge to you. Who have you lost track of that you want to find again? Who are you most afraid of losing from your daily life? Reach out today and promise to be intentional about your relationships. It requires making a conscious effort, but our lives are enhanced when we strengthen our network and expand the quality of our friendships. Think about the web of people you want to stay with you throughout life, and send them a quick note to say  “Thanks for being a part of my life.”

“There is a deep interconnectedness of all life on earth, from the tiniest organism, to the largest ecosystems, and absolutely between each person” Bryant McGill, Voice of Reason.