What is Social? – Revisited

Caregiving

What is Social? – Revisited

By Stephanie
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Originally posted 2/24/14 by Stephanie Holland
Josh and his mom

As we start the last week in February I’m taking a moment to reflect on “social” month on The Road We’ve Shared.

This picture was taken the day of the Boardwalk Buddy Walk in Rehoboth Beach, DE.   Josh and I went to support the Saylor family and TeamEthanNation.  It was a great day of fun and dancing for Josh – for me it was bittersweet –  remembering Ethan and spending time with one of my very best friends that I don’t see often enough.

A Special Kind Of Social

But the emotions I feel when I see this picture are about my relationship with my son.  We were both tired, exhausted really, and taking a moment to wind down at a playground.  It’s the conversations we have, the trust, and understanding that allows us to communicate in ways other people just don’t understand that drive me to want more, better for him.  

As parents and caregivers of someone who has Down syndrome we are often called on to “interpret” for them, or explain what it is we think they want.  It can be a time saver in this fast paced world we live in, but it can also be a slippery slope towards denying our loved one a voice.   

Allowing Time to Speak and Listen

Josh loves to dance

We don’t have too many opportunities to be around large groups of strangers these days, but that weekend at the beach, Josh had no problem expressing himself and his desires.  When I tried to ask him if he wanted to do something else while he was busy on the dance floor with his peers he ran circles around the pavilion in order to escape me.  He knew I was coming to try to get him to stop dancing and he was having NONE of it!  I had no choice but to sit and wait for him to be ready.

Patience is what it’s really all about when it comes to social interactions with Josh, and anyone who has a communication impairment.   The people at the Buddy Walk were all interested in hearing what Josh had to say – for himself.  They didn’t ask me – they spoke directly to him – and he answered.  In a community that “gets it” it’s easier to slow down and allow all the voices to be heard and valued.

The Road We’ve Shared

Which brings me back to our community and what we’ve started here.  It’s been two incredible months!  I’ve made so many new friends and read so many inspiring stories!  I’ve also done some serious self-reflection.  It’s been a little uncomfortable at times as I’ve had to ask myself some tough questions.  But relationships, personal growth, and learning to step outside of your comfort zone are all a little unsettling for anyone.  They’re also necessary parts of life.  We, as caregivers, need to plan futures not only for ourselves, but for our loved ones as well.  We kind of have “double-duty” in that regard.   

Social month turned out, for me, not only to be about Josh and all of the people who have Trisomy 21.   Those of us with 46 chromosomes need to “be social” too!  The past two months have reminded me just how important it is to have a team of people who understand your challenges around you.  No, we’re certainly not saying  ”Woe is me – my life is so depressing and hard” – one listen to our Radio Show and all the laughter and understanding that happened in that two hour conversation proves it.   We’re saying – this is different from what most people experience.  

I’ve often referred to Josh having his own language –  ”Joshisms.”   I get it, but most people wouldn’t understand and they are missing out.  Those of us on “The Road” have our own kind of language too.  We get each other in ways other people just don’t.  I, like a lot of parents I think, slowly drifted out of the Ds community after Josh finished high school.  The past two months have reminded me of what I was missing – the “social” of it all.  I was missing out – and I’m so grateful to all my new friends on the road we’ve shared! 

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