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.
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.
“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.
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.”
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?
Participants were 12 parents – 6 with children who had intellectual disability (CD) – 6 who did not (ND) and whose children were between the ages of 3-9
Some of the parents were attracted to CE products in order to their child feel more normal, because the real or perceived abnormality was harming their child emotionally or socially. However, parents found it hard to strike a balance between achieving normality while still encouraging their child to accept themselves for who they were. Both groups of participants expressed worry that encouraging their child to take CE products would leave their child feeling ‘broken’ or incomplete as a person, even when the intention of the products was to mitigate their child’s suffering.
“Parents viewed themselves as being responsible for avoiding harm in their child’s life wherever possible and risking harm for their child for the purposes of CE was seen as unacceptable to all participants in this study.”
Compared to other studies, parents in this one were more concerned with changes in identity of the child that came from a perceived message they would be sending by encouraging or forcing their children to use CE products in order to be “loved, happy, successful and complete.”
There were more similarities than differences between the parent groups. One important difference was that parents of children with a CD were able to give concrete examples, not hypothetical stories, of what it is like to see your child struggle and firsthand experience with pharmaceutical interventions. They also: “expressed that the way society was structured often worked against their child because of their ability differences, and as a result, sometimes they felt desperate and used approaches that they may not have even considered previously.”
For purposes of this study, CE was defined as interventions that would create “above average” results. Parents on the other hand continuously referred to the interventions as being disability based and used to mitigate struggle. Using CE products for children who did not have a disability or disease was unacceptable because they could: “damage a child’s self-esteem, run the risk of putting the child’s physical health in jeopardy, and/or perpetuate unhealthy levels of cognitive competition between children.”
Products not marketed as being medical treatments would be more popular.
Results suggest that parents who push their children to use these products will be stigmatized by other parents who view them as “being too preoccupied with outward appearance, overly competitive, and failing to care properly for their child.” This is multiplied for the use of CE when children have less autonomy (as the case with children who have a disability) and brings up the issue of CE products being used in secrecy.
Parents in this study suggested that they would rely on physicians to know the risks and benefits of these products and be able to monitor their use. Physicians have reported in the past that they may not feel comfortable with prescribing these products because of the lack of available information – scope of their practice.
Terms such as ethics, or ethical treatment were not used once by participants in this study. The only reference made to moral decisions was made in reference to not judging parents who use the products.
Researchers talked about the future of CE products and more wide-spread use. Implications including the idea that use by “typical” children to obtain above average intelligence may negatively affect people with CD, creating further stigmatization and competition for services.
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.
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.
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.
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!