Aging with Down syndrome creates new health challenges. Families are helping each other by sharing what they learn.
Aging with Down syndrome creates new health challenges. Families are helping each other by sharing what they learn.
One of the most important things we, as parents, can do for our children is allow them the space to make their own mistakes. Continue reading APRIL A TO Z BLOGGING CHALLENGE: Dignity of Risk
Today’s short film tells the story of Glen Miller, a young man who decides to take matters into his own hands when his usual assistant takes the day off. “Cared Witless” is directed by Karen Scheader.
Imagine it, someone else makes all of your decisions: where you live, who you live with, and what your daily routine entails. This person might be a family member, but in most cases everything from the choices available to you to the final decisions made are governed by someone you don’t know.
Denying the mentally retarded exposure to normal risks commensurate with their functioning tends to have a deleterious effect on both their sense of human dignity and their personal development. In addition, the removal of all risk diminishes the retarded in the eyes of others.
We all know how important predictability can be for those we love. But how do we get started? I’ve recently been given the opportunity to review a new tool called “The Caregiver’s Notebook – An Organizational Tool and Support to Help You Care for Others” by Jolene Philo. If you’re anything like me, (and a daunting task leads to procrastination) you’ll love this! I’ve put this book at the top of my New Year’s resolution list of “to-do’s.”
One of the great things about this book is that it’s divided into sections, each with instructions and inspirational stories that get you motivated. It lets you choose what part to tackle first. For us, Josh’s medicines and recent lab results are important right now. The sections for “Medications” and “Medical Information” will have top priority.
Continue reading The Caregiver’s Notebook – A Review and Giveaway
As parents, we tend to think of what we do as natural or no big deal. We’ve been conditioned to think that by placing a caregiver label on ourselves we somehow diminish our child. We don’t want to admit that our adult children could cause us stress. We love them! We’re used to taking care of them and we wouldn’t have it any other way.
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“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.”
“Having a child that has a disability, it’s all-encompassing,” he added. “You could see how people would lose themselves.”
All parents endure stress, but studies show that parents of children with developmental disabilities, like autism, experience depression and anxiety far more often. Struggling to obtain crucial support services, the financial strain of paying for various therapies, the relentless worry over everything from wandering to the future — all of it can be overwhelming.
One place to start is the Caregiver Action Network. They have a resources page that you might find helpful.
BlogTalk Radio also has a category for “Caregiving” if you’d rather listen to discussions than read.
Please feel free to comment on this article if you have any suggestions for other resources. If you’d like to share your story, please email us!
*Remember – the flight attendants always say, put your oxygen on first, before you try to help someone else…
As the debate over sheltered workshops and “meaningful employment” continues, I’ve struggled with exactly what that means. In my teens I worked at a few fast food places. I ended up moving to a better job at a drug store. From there I ended up paying medical claims for an insurance company. None of those were exciting. They were available. I did my best and moved up in the last company, changing positions when I discovered something that I was good at.
I’ve always envied people who have the resources to create their own employment, follow their dreams, and earn a living doing what they were meant to do. Most of us aren’t that lucky. What we can do however, is pay attention to what motivates us. We can take an honest inventory of our talents and skills. Hopefully, we’ll think of a dream job, and maybe get a chance to work towards it. That’s what dreams are for – setting realistic goals. Who likes to keep working towards the same dream all of their lives without getting anywhere?
As parents, I think too often we end up settling for our kids too. Sometimes it’s a matter of financial resources. Parents may look for employment for their son or daughter that allows them to pursue their own careers. They can’t afford to stay home, so the child has to go somewhere. Sometimes we end up falling for the hype we’ve been fed since our child was born – they are limited – they won’t be happy in challenging positions so we should give them something easy to do so they can be “productive.” Sometimes, we just don’t know where to turn or what to do. Services and supports are out there, to varying degrees, but they can be difficult if not impossible to navigate unless you have someone who can show you the ropes.
In the past several months I’ve gathered stories about people who have Down syndrome that have fabulous jobs. Their parents were able to find a talent or skill and turn it into an opportunity. Full disclosure: I’m a little jealous. I know not everyone operates on the same level. Not all people, with or without Down syndrome, could to the jobs that these people have. The thing that inspires me is that the parents were able to find solutions. I’ve been thinking a great deal about how we can support each other to make this the norm, rather than the exception to the rule. I’ve been thinking about WHY we settle – for ourselves and our children.
Here are a few of the people who have turned their passions into “meaningful jobs.”
Tim HarrisOwner of |
Christian RoyalMakes and Sells Pottery |
Sarahmakes |
I would like to have a brainstorming session on how we can help each other discover the hidden talent and passion in each of us and our children. We all have something to contribute…. Anyone interested?