One of the ways society is finding out more about Down syndrome is through television and film. While healthy debates within our community critique the message of stories and methods used to tell it, we can all agree that the performances are priceless! We'll be exploring how the arts allow adults with Down syndrome express their creativity and raise awareness as we prepare for the Ds Road Show in October!
How Do We Face The Scary Truth? Down Syndrome and Dementia: A Caregiving Issue That Needs Our Attention
By: Stephanie Holland
Parenting, of all kinds, requires hard work and determination. We all want the best for our children and try not to let what might go wrong keep us from living our best today.
Sometimes, we need to put our own discomfort aside. Alzheimer’s disease is affecting record numbers of families, and a disproportionate percentage of the Down syndrome community will continue to be affected. We have seen an increase in attention being paid to research for a cure. We also need increase our efforts to support families that are facing caregiving for loved ones with dementia and other medical conditions that typically occur in adults with Down syndrome.
If by chance you're not happy right now - we've got just what you need!
Today we look at videos that include adults who have Down syndrome, and of course, we start with the one that went viral last year on World Down Syndrome Day.
Okay, you can tell us, were you dancing or at least clapping along?
The videos that get the most attention may have a catchy tune, or make us think about the possibilities for our loved one - or both!
People We Know
Hey world! It’s time you met Beth. Beth is 30 years old, just. She just had a birthday and what a party weekend it was! Beth’s mom Cindy gives the “short version” here: “Beth is the oldest of our three girls. She was born in October of 1984, before cell phones and home computers. She started preschool at 2 and was always in a special ed classroom throughout school. She got her diploma and graduated from high school in 2004. She attends an art class, is on a bowling league and works at Little Caesars Pizza.”
But we all know, the story of a life is so much more than that.
Adventures with Beth isn’t the story of one, it’s the story of a family. And Cindy has been blogging on this site since 2009. 2009 People! So when you peruse, you can “Start in the Middle,” go Back to the Birth Story, or the recent celebration of Beth in the local production of Grease. What Fun!
As a reader/follower, I’ve enjoyed Cindy’s story-telling, her honesty, and also her photos! She’s really gotten to be great with the photos! Cindy’s family is currently going through some big changes, and even with that she has not neglected us readers, she shares the whole story. It’s real life people and now is a great time to hop over, look around, say hi and get hooked on Adventures with Beth.
Josh, Marcus, and Josh all have had positive work experiences, however, each of them have faced challenges with finding employment placement as well, with varying levels of current success in that area.
From the back of the car Emily shouts to the sunset - Look! The sky is orange juice flavour!
Today’s adult blog spotlight is on Orange Juice Flavour Sky. This blog is written by Emily’s dad, Paul, and if you weren’t clued in by the extra u, they share their story from across the pond. Rotherham and South Yorkshire area where folks call Trisomy 21 Down’s syndrome. I love reading about Emily’s family and their adventures.
What you should do, right now, is drop everything, put the kettle on, and spend a few hours reading everything from the blog that shares: “Lessons I'm learning from Emily and others with Down's syndrome.” However, if you, for some odd reason, can’t do that. I will point you to a few of my favorite posts.
This post came early in my “meeting” of the family, A Date to Remember. This is the story of Emily’s first date. “So let me tell you about my daughter Emily & her boyfriend Jono. Emily is 20 and has Down’s syndrome; Jono is one year older and also has Down’s syndrome. They met at school when Emily was 16. It soon became apparent to their teachers that there was something in the air (and it wasn’t the chicken korma drifting through from the dining hall). No, Emily and Jono had hit it off. Laughing together, wanting to be with one another, being in a better mood when the other was near. Sound familiar?” You’re going to have to read on to see how this one turns out.
Here on The Road we love to share stores about adults who find their creativity! Allie has done just that! She's also the first (alphabetically) on our list of adults who have their own businesses! Today's post was written by Allie and her Dad and on Friday we get to talk to Allie on our BlogTalk Radio show! Be sure to join us and welcome Allie and her family to The Road!
Check out Allie's website and Facebook page.
Originally posted 5/2/14 by Stephanie Holland as the introduction to May's Job Month discussion.
ADD YOUR VOICE TO OUR SURVEY
A few weeks ago, there was a "landmark" decision about sheltered workshops that may end up signalling the end to all work opportunities that are deemed exclusive.
I wrote about my initial thoughts in a previous post:
Legal actions forced de-institutionalization and inclusion in schools. This IS a good thing - but not appropriate for everyone. Now, states and private companies are afraid of lawsuits and that is hindering their ability to provide services for those who really need them.
Since then, we've had a discussion online in an IDSC group, and gotten more input from other parents. I've also created an online survey for anyone who is the parent/guardian of an adult with Down syndrome to share their thoughts.
We've gotten 21 responses so far and the results are mixed. The survey asks about personal experience and thoughts about whether "sheltered" environments are exploiting our loved ones and should be eliminated. So far, 7 people think yes, they are bad in every sense and better alternatives should be created. However, 14 respondents aren't so sure that this is the way to go.
Yes! You ARE a Caregiver!
August is healthy living month on The Road and as we focus on ways to keep our loved ones active and healthy, we can't forget that we also need to take care of ourselves.
A recent New York Times article talked about the facts of caring for an adult child with an intellectual / developmental disability:
“Other 21-year-olds move out and take jobs, but most of these children stay at home,” said Dr. Dykens, the director of the Vanderbilt Kennedy Center. “You have aging parents and aging offspring. You are each other’s for life.”
Our situation is different from other parents.
“Having a child that has a disability, it’s all-encompassing,” he added. “You could see how people would lose themselves.”
By the time our children reach adulthood many of us define ourselves first and foremost as a parent. I'm "Josh's Mom" above all else. It's a statement of pride, but it's also an indication of my position as lifelong caregiver.
Like many services that families of people with disabilities depend on, regulations regarding background checks are set by the individual states. Unsuspecting families may be told that all workers must pass a "background check" but depending on where you live, that could mean a host of different things. The figure below from a recent government study shows the variety of state policies.
Life on "the road" of caregiving for adults who have Down syndrome.
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