Originally posted 2/3/14 by Stephanie Holland
February is Valentine’s month – a time when many of us think about our relationships and how to express our love. Here on
“The Road’ we’ve decided to make it a month of discussion around the relationships of our loved one who has Down syndrome.
Share your Stories
The topic is broad for a reason – we want to hear what your thoughts are when we say “SOCIAL.” If you’re like me, certain words immediately trigger a reaction. What does the word and the concept mean to you? Share your stories with us!
My Reaction to “Social”
When I think about Josh’s relationships I have mixed feelings. He’s very social (unlike his mother lol) and LOVES to be with people. He has a few great relationships with family, but for the most part, when he talks about friends, they’re people who have been in his life for brief periods.
He talks often about his “girlfriends.” To him, Emma is one of those and her name comes up whenever someone asks if he has a girlfriend. Emma is the daughter of a friend of my mother’s. She happened to be the right age to be his “date” for the prom and was willing to go with him. He hasn’t seen her since.
On one hand, I’m very grateful to Emma and my friend who went with us to Josh’s Prom. It’s an experience that he will always remember and would not have had if I hadn’t stepped in. That night, he looked like he belonged in a Robert Palmer video!
On the other hand, it’s heartbreaking to hear him talk about being “dumped” by his girlfriend – who in reality was just doing us (me) a favor. It’s also worth mentioning that while at the prom, Josh spent most of his time following a “typical” girl from his class and wondering why she had her own date.
When Josh was younger (really young) he used to say he wanted to get married. He said it A LOT! So I came up with what I thought was a brilliant response: “You can’t get married until you’re 30.” Moms out there might understand that this was meant to be a diversion at the time to get him to focus on something else. Well, it stuck! He’s been repeating it to me with regularity ever since. Now it sounds more like “When I’m 30 I’m getting married!” He just turned 27 so ….
More harm than good?
Both of these scenarios (and others I’ll share later) have left me feeling guilty. I’ve tried to introduce him to people and provide settings for natural friendships to evolve. We’ve moved several times and I know that makes it difficult, but I wonder if I’ve done more harm than good by “facilitating friendships” along the way. I’ve read tons of literature on the subject but it doesn’t really help when it comes down to your child’s happiness. (More theory vs. reality). There’s also lots to read out there about adults who have intellectual / developmental disabilities and their “friendships” with paid staff. (Here’s a literature summary
So what’s a mother to do really? I look forward to hearing your stories about what has worked for you and what your concerns/fears are. Where are you on this road?
Originally posted in Feb 2014, part of The Road’s social theme.
Monica and David, winner of several documentary film awards including Best Documentary at the Tribeca Film Festival. Have you heard of it?
The film follows Monica and David, both of whom have Down syndrome, from just before their wedding to just after their one year anniversary. The documentary includes real time video of their day to day lives as well as interviews with Monica, David, and people from their families.
Monica’s mother is adoring and perhaps over-protective.
In fact, it’s shocking she allowed this movie to be made because she carries a lot of fear about the world. Which of course, conflicts with her desire to enable Monica to live a full life and explore her potential. (Sound familiar anyone?) Monica’s mother admits she has built her life around her daughter, and her daughter’s safety and happiness is her top priority. There are worse ambitions.
I’m overprotective of Monica, too. I’m glad her family has the means to protect her and care for her new husband as well. Neither of the couple can cook, admittedly. Nor are they allowed to go down to the beach to walk by themselves. They work when they can. They have friends over. They help around the house.
You know what I loved? I loved that there was closed-captioning for those of us who don’t speak Monica and David, but within their home it was a language everyone knew. I remember when Marcus was little and had friends over or in the carpool to-from school, he would banter with his
friends. He spoke Marcus and they spoke Michael/Joey/etc. We parents didn’t always understand, but they did. They understood each other. I wish Marcus could walk around with closed captioning. Not for me, I speak the language, but for everyone else. Folks often give the impression, “If I can’t understand you, you have nothing to say.” I hate that. Closed captioning. Or maybe Douglas Adams’ babel fish. That would be the best. But I digress…
So the question is, what did everyone else get from the story of Monica & David? Did the closed captioning allow people’s minds to open? Did mother’s sharing their hopes and fears allow people’s hearts to open?
Did parents with young children with Down syndrome feel a burst of hope or a dose of dread at these outcomes, at this story of a life?
Regardless, I’m glad Alexandra Codina told this story the way she did. The clips were honest. There weren’t contrived emotions from contrived moments. *Advocate to the reasonable* it’s all we can really do, and I feel she did it well. Have you seen Monica & David? It’s on Netflix now and also available on DVD. Let me know what you think.
- Mardra, Grown Ups & Downs
Originally posted 2/24/14 by Stephanie Holland
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
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!