Category Archives: Caregiving

Perspective – Life in a Group Home


onewayImagine 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.

Someone who doesn’t even know you controls your life.

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Acceptable RIsk?

By: Stephanie Holland
This week another story of an adult who has Down syndrome gone missing came across social media.  The 35-year-old woman was found, nearly a week later, but her story brings up more questions about what is “acceptable” risk when it comes to our loved ones.

The Dignity of Risk

Caution tape

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.

As parents and caregivers, part of our job is to keep our loved ones safe, regardless of how old they are. It can be tricky trying to balance between being overprotective and justifiably cautious. Perske coined the phrase “dignity of risk” in the early ’70’s but it’s still one of the most difficult concepts in caregiving for parents of children with intellectual disabilities.

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W – Work that Needs Doing

By: Stephanie Holland
Work on The Road We've SharedThose of us with adult children know that we, as a society, have come a long way in terms of advocacy and services for people with intellectual and developmental disabilities (ID/DD);  but we also know that we still have a long way to go before our children are fully accepted and understood.
Today we’ll look at what kinds of projects are on the table right now, and where we might want to go next.Our community has been celebrating a victory lately: the battle to get the federal ABLE bill passed took almost a decade.  Parents and advocates from the Ds community fought in the trenches with people from many other disability groups.  That kind of teamwork and dedication is necessary to accomplish the big tasks. The National Down Syndrome Society was among the leaders of that charge, and they have a well thought out plan for what comes next. During the 321 eConference, Ginny Sessions Siller, and Heather Sachs talked about the NDSS agenda for 2015.  The NDSS National Policy Center is heavily involved in passing and tracking the progress of ABLE bills at the state level.  Both the NDSS and the NDSC have a system where you can sign up for alerts when support is needed from the community. 

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The Caregiver’s Notebook – A Review and Giveaway

The Caregiver's Notebook on The Road We've SharedThis year, we’ve been talking a lot about the joys and responsibilities of caregiving for adults who have Down syndrome.  We all need a little help every now and then, and I’ve been extremely grateful for the way people have come together on The Road to support each other.  One thing I’ve become aware of from talking to others is my own need to put more of our daily routine and important information in writing.

If something were to happen to me, would others be able to continue my son’s care with minimal disruption for him?  

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

Healthy Living Month – Take Care of YOU!

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.  
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.
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.   

Taking Care of You

We have to make sure that we are as healthy as possible …

so that we can provide the best care for our children.

It’s not a flaw to admit you could use some some help or to learn some techniques for dealing with stress.

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.


There are lots of resources available for caregivers.  During the month of August we’ll be looking for and sharing things that other parents have found helpful.  

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…     

A person with down syndrome can, in fact, be an introvert

This blog originally was posted by Grown Ups and Downs February 26, 2014.


In my house a common argument is “Admit it, you’re an extravert.”

“Nooo – you are the extravert!”

“You are!”

“No, You are!”

And so on…

This is because my husband, who denies being an extravert, is generally the most liked person in any room because he knows everyone in it.  He knows their names, their pet’s names, sometimes their kid’s names, and other criteria that can only be found by engaging in conversation.  He likes to make people laugh, and is often successful with this endeavor.  He is a musician and has performed for crowds of many sizes in many venues. He actually talks to the neighbors, and since we live in suburbia this is not a required social function. The only real complaint of his last employer was that, well, he spent too much time socializing. A trait which he saw as an integral part of his job as self-proclaimed good will ambassador between departments. Doesn’t really sound like an introvert does it?

And me, to make it shorter, I like to throw parties. My previous job required meeting many new people and maximizing networking opportunities. I mingle well. And, the way Quinn sees it, I force him from the house into the world to events/occasions he’d rather avoid (although most of the time he enjoys them immensely).

Then there’s Marcus. Marcus wants everyone to be happy. That is what is most important to him.

Which incidentally, if more people were inclined to this priority, there would be peace on earth. But that’s not what we’re talking about today. Today we’re talking about the fact that Marcus is also an introvert.

What some perceive as a contradiction is he is also a performer. He L-O-V-E-S to perform. There are many example of introverted performers. That doesn’t surprise me because although a performer is in front of a crowd, he/she is not with the crowd. It can actually be quite solitary.

The difference between an extrovert and an introvert is where you get your energy. Does it come from meeting new people? Or does it come from your time alone? Do you get a charge from groups and networking? Or do you need to charge up before or after that? Marcus used to sit by himself at lunch at school. Not because he was ostracized, but because he wanted those moments alone. I think Marcus’ favorite person to talk to is himself.

Not that he always wants to be alone. He enjoys a night out. He loves to go to shows. And a football game now and then is certainly a good time.  But while tailgating, he may prefer to sit off to the side and enjoy his hotdog. And every days list ends with him being sure – “Then Home?”

“Yes, Home.”

Replied with a happy sigh.

Why am I going on about this? I guess it’s just to be clear that Down syndrome does not make someone an extrovert. It doesn’t mean that Marcus wants to hug and talk to everybody he sees. It doesn’t mean he has a million friends and freely gives high-5’s to all. People seem to want this from him. People want him to be gregarious and free with social expressions. Often I find he has to work to accommodate people in this arena.

Sure – If he just rocked a song on a karaoke night – then Yes, he’s happy to share in congratulatory high-5’s with strangers, who doesn’t?  But out of the blue? Nah. He’ll leave you hangin’ as they say.

He’s friendly and polite. He’s anxious for everything to be ok.  He’s funny and likes to joke around. And no one wants to believe he’s an introvert. Of course, he’s a Sikora.


As adults, we all end up settling in one way or another.  How many of us, with or without a disability, end up working at a job we absolutely love?  Most of us settle for something that will pay the bills.  Hopefully, we’re able to find something that lets us use our skills so we’re not bored to death, but most people LOVE the weekends.  Rarely are we able to convert our passion into a career.  

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.”  

  • As a 2004 graduate of Eldorado High School in Albuquerque, New Mexico, Tim was elected homecoming king by the highest margin of votes in school history. 
  • In the fall of 2004, Tim moved to Roswell, New Mexico to attend Eastern New Mexico University.  
  • Tim spent much of 2009 and 2010 living aboard a sailboat with his parents and traveling throughout the Bahamas. 
  • After observing the effect Tim had on Red Robin restaurant and its customers, an idea emerged regarding Tim owning his own restaurant. In May of 2010, a lease was signed for a facility in Albuquerque and a construction company was hired for tenant improvements.

Donna and Jenna

We are the best of friends. We enjoy making cards and want to sell the beautiful cards we create.  With the support of our parents Just For You CardArt was launched.

Christian Royal

Makes and Sells Pottery

Christian Royal is a young man with Down syndrome who struggles with single words and has yet to grasp basic addition or time.  However, since his teen years, Christian has shown an interest in, and aptitude for, working with clay. Christian was unable to “do” school as other students did and began making pottery as part of his homeschooling program.  
“Sarah and I started cooking together because she was going through a tough time in middle school,” she told me. “She hated school. Hated having Down syndrome. Hated being different. She shut down and hid in the basement and cut herself off from everyone. So in seventh grade, I removed her from all special ed courses and only put her in inclusion classes and homeschooled her half days. I used cooking to help teach her. She really liked it. One day I thought, Why not let others see the benefits of cooking and how you can incorporate therapy, communication and friendship?   

Oliver Hellowel is a Photographer

Oliver now (2012/2013) attends a mainstream college in Taunton Somerset England and hopes to be able to further his photography to a point where it can be his form of income.

He wants to be ‘a professional’

Creative Thinking and Not Settling

When I spoke to Helen Royal, she told me that neither her nor her husband knew anything about pottery.  The tried it as a way to bring art into his homeschooling curriculum.  His parents had taken him out of school because teachers wanted to put him on a “trainable” path… Sarah’s mom used cooking as a way to connect with her daughter who was having trouble in school.  Tim worked in public restaurants and found he enjoyed greeting people.  His parents were able to by a store for him and now his hugs are famous!  Donna and Jenna are best friends who turned a hobby into a business.  Oliver and his step-father started taking pictures together and discovered a hidden talent that could end up being very profitable.  All of these are examples of using passion and talent in a entrepreneurial venture.  They are extraordinary stories, not because the adults in them have Down syndrome, but because they and their families didn’t settle.   

 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?


Natalie Ball  &  Gregor Wolbring   –  2012
This study was conducted as part of an undergraduate honors thesis project by students at the University of Calgary.  

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



Parents were more likely to accept cognitive enhancements (CE) as a form of “treatment” rather than “enhancement” – even without diagnosed “disability.”   It was more acceptable for enhancements to be given to someone with “below average” intelligence in order to make them more “normal” than it was to give them to children with average intelligence to make them ‘above average.’  It was also more accepted if a child was “struggling.”  Prescriptions and surgical treatments were especially considered to be treatments (of a medical nature).  Natural products and devices were more acceptable for ND children because they were considered to be less risk of harm.  Some considered self-esteem and overall well-being to be a component of health and therefore accepted CE in particular situations.


Parents expressed concern over self-diagnosis and medicating.  Concern was also presented about strict guidelines as to who “qualified” for CE and who did not.  Parents did not want children to be subjected to unwanted interventions or unable to obtain CE because of criteria set on broad definitions of disability.  Both groups expressed a desire to have CE used in conjunction with physician supervision and extensive research.


Generally the first consideration of all parents interviewed.  Considerable risk were considered to be associated with all types of CE.  Parents of CD children were able to provide more concrete examples of harm associated with pharmaceuticals than parents of ND children because they had either more firsthand experience or had previously considered the option.


Parents from both groups expressed that the choice should not be made based on pressure from other parents or social norms.   One of the differences between parents of ND children and children with CD was that parents of children with CD noted the possibility of being forced into using pharmaceuticals because of the current state of health care and lack of support for using alternative, more desirable, methods.


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 noted that the consequences of below-average ability include: “low self-confidence, limited opportunities, and social isolation.”   The cognitive ability – in and of itself – was not important.   What was important to the parents was outcomes – being able to “fit in,” and for parent of children with CD, being able to communicate, “cope,” learn, gain independence, and function on a day-to-day basis without struggling.  “Natural” abilities were more desirable.   Only the parents of children with CD discussed more “fundamental” abilities such as being able to communicate, learn, and cope with everyday life.


“Parents were generally hesitant toward their children using CE products.  They related this hesitancy to issues of disability, harm, confidence, competitiveness, and acceptance from peers, parents, and self.”  

“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.  


Don’t forget to go back to our “Research Forum” and tell us what you think about this study.

What is Social? – Revisited

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!