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.