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
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
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
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!