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What happens with our aging parent caregivers during quarantine?

My mom, up until recently, lived alone.  What I mean by “alone” is that she was, and still is, the only caregiver for my youngest brother, an adult in his forties with severe developmental disabilities.  My brother needs help with every aspect of daily life.  Unfortunately for both of us, she also lives very far from me.  This put us in a very precarious situation, especially as travel became restricted and tickets were voided.

One question that has repeatedly come to mind (and that my mother has voiced often) is the question of what happens if she gets sick and needs to be completely isolated.  Who would take care of my brother?  And vice versa, what would happen if my brother got sick?  He needs help in many aspects of life:  He cannot prepare food, may need help to eat, go to the bathroom, take a shower, you get the picture.  This question came to the forefront when her entire region was placed on lockdown.  During lockdown, if my mother were to be isolated, no one else could come to her rescue.

In the last couple of weeks I have seen reports from parents who can’t see their children because they work in hospitals and are afraid to be carriers of this virus, or because they, themselves, are sick, and need to be isolated.  I saw a neighbor’s post on social media, where she describes that she and her husband are both infected, and the children are basically fending for themselves.  Good neighbors and local restaurants deliver food to the children so that they don’t go hungry.

My mother was lucky that a cousin decided to temporarily move in with her, and I am forever grateful to her for doing this.  Her region is still on lockdown and it would have been tremendously difficult for her and for me.  For many of us, it is not only the anxiety over the illness but also the anxiety over what happens if isolation is needed that keeps us awake at night.

It has always been my belief that when we live a situation like this for many of us the world only revolves around us and the four walls that enclose us.  It is easy to try to protect what is “us” and “ours” and we tend to forget that it is precisely in times like these that we need to be the most generous, the most neighborly, the most caring, and the most mindful.  These times call for us to reveal the BEST in us.

Thanks to my mother’s cousin, she is not alone, and she can rest assured that in the worst of situations, there will be someone beside her.  If my mother needs to be isolated, my brother will have food on the table and will be able to get assistance for those activities of daily living that would be impossible without her.

My mom and my brother

Are there any other primary caregivers out there who are terrified of being in a similar situation?  I would love to know what you are feeling at this time.  What are your thoughts?

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How to Deal with Your Toddler’s Tantrums

If you have been home for a while, dealing with your toddler’s tantrums is probably at the top of your list. Parents find it very difficult to get anything done while their children are kicking and screaming at the top of their lungs!

It’s no secret that toddlers have tantrums.  For some lucky parents, tantrums are a rare occurrence, and for other no-so-lucky parents, tantrums are the order of the day.  How do you deal with your toddler’s tantrums once and for all?

For starters, it is important to understand them.  Why is it that tantrums occur at around this age?  What makes our toddlers want to engage in them?  How do we understand children when they are having a tantrum? 

Dealing with tantrums is not easy, but we have streamlined the process by 1) Understanding your child’s tantrums, and 2) Eradicating or significantly decreasing them.  We explain this in our new course, The Tantrum-Free Toddler.

Don’t lose your mind trying to deal with children at home who demand your attention while you have new remote work responsibilities.  This is the right time to work on modifying that behavior!

If you follow the tried and true behavioral methods that we outlined in the course, consistently and diligently, we promise a tantrum-free child in a matter of days.  Don’t miss this opportunity!

This course is just $20, but it won’t be for too long! Grab your copy before the cart closes on April 15!

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Love in the Times of Covid-19

“We are here to awaken from our illusion of separateness.”  Thich Nhat Hahn

I have always been drawn to Eastern thought, philosophy, and particularly, Buddhism.  I have always believed that in this world, we are all interconnected, and the Buddhist principle of equanimity (we are all equals) represents this belief.  There isn’t an action that we take today that does not have a repercussion in the world somehow.  They call this karma, which is more than what it represents in the colloquial sense of the world.  Karma is cause and effect. 

Buddhist monk looking over at the mountain

We, especially in the Western World, tend to erect these big walls, hide behind them, and call them “me.”  We are individualistic, and to a degree, act to protect this “me” that we believe is separate from everyone and everything else.  Enter the new coronavirus, Covid-19, a microscopic organism that does not need anyone’s permission to enter a region, a country, a body, to remind us of how interconnected we are.  We typically don’t think about how the cup of coffee we drink in the morning connects us to the rest of the world, for example.  Before we even place that little cup in the machine, it was packaged, bought, collected, grown, planted.  We may not think of the farmer in Colombia who planted the seed or collected the coffee beans, but we are connected to them when we drink that morning coffee.

Covid-19, the new coronavirus, has made us think about ourselves, our surroundings, and everyone else in ways that we haven’t before.  Our tendency is to tend to protect the “me” inside of us and push away.  But with this epidemic, I have seen many people tell me that they are willing to sacrifice things they love for the sake of others.  Many people are choosing the wise path.  An action that we take today can affect someone else tomorrow, and when someone is affected tomorrow, in turn will affect ourselves.  This is a difficult choice, but many people are willing to do this so others are not affected.  What a wise, loving choice!

I propose that we choose LOVE and KINDNESS instead of fear.  I propose that we think of the world in terms of US and not in terms of US vs THEM.  I propose that we all write stories so that we can tell the future generations what it was like to live through these times. 

Let me know how you are coping, what you are thinking, and what you see.  If you want to appear on this section please send your story to ourspecialvillage@gmail.com

#Lovingkindness is the answer!

many incense sticks on a bowl of sand
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The Long Blink: A Must-Have Book

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When I first read about The Long Blink, I became really interested because I thought this book would illustrate what I, as many other family members and advocates for families of individuals with disabilities, have always been saying:  That a “disability” can be acquired by anyone, at any time, and can change a life in a moment.  The Long Blink surpassed my expectations. This is the story of a family, the Slattery family, and for Ed Slattery and his family, it only took a blink of an eye, a long blink that would change his and his children’s lives forever.

Ed Slattery could not have imagined that a phone call in August of 2010 would turn his life upside down.  The voice on the other line was telling him to get there immediately:  His family had been in an accident.  He would later learn that while both his children had been severely injured by this accident, it was his younger son’s prognosis that was very worrisome.  He would also learn that his wife, the love of his life, Susan Slattery, had died in this accident.

I wish I had enough space to talk about the many reasons why I think this book should be read by the entire world, but since this is not possible, I will try to illustrate in just a few points why I think this book is an absolute must-have for anyone who wishes to understand our community:

  1. Life can change in an instant:  Anything can happen to anyone, at any time.  For the Slattery family, it was Matthew who from one moment to the next, went from a normally-developing young boy, to battling for his life, to making heart-wrenching efforts to be able to hold objects with his right hand.
  2. Special Needs need Special Attention:  Even though well-meaning people may have the best intentions at heart, and may think they can define what our community needs, it is only our community that can and should be an active participant in decision making.  For Ed Slattery, it was building a new home so that Matthew can fully participate in daily living.  For me, it was being able to get a gate pass to accompany my brother to the gate when he flies.  I can’t say enough how frustrating and depressing it was for me to have to work in places where I was told what “script” to follow when dealing with families in our community.   Once, I was reprimanded for giving a parent options.  This practice is humiliating, demoralizing, and just plainly wrong.  In his journey, Ed Slattery discovers how important it is to adapt to his son’s new life and how much growth can result from this adaptation.
  3. Our Community is Inspiring:  Matthew not only inspired and moved his father, Ed, to a whole-new life, but he also changed the lives of so many people around him.  It is easy to see how learning about Matthew and the Slattery family was a transforming experience for Brian Kuebler, the journalist and author of this book.  He was sent to report on this accident first but never lost sight of this family’s experience.  The result was this brilliantly written book and the message of hope and solidarity that it inspires.
  4. Change is Difficult:  As members of this community, we tend to understand firsthand how we got here and what changes need to be made so that others do not have to suffer.  The community at-large, however, may have a much more difficult time absorbing this knowledge.  Since the accident that changed his son’s life, Ed Slattery has been a tireless advocate for trucking safety regulations, as it was a truck driver who dozed off on the road and killed his wife.  As frustrating as this has been for him, he has yet to see the full results of his arduous work.

Reading this book was a very personal journey for me.  It often reminded me of my family, growing up, the challenges and obstacles that we faced.  I’m thankful that because of our advocacy over the years, life has become a bit more manageable for families today.  Reading about the Slattery family leaves me full of admiration not only for Ed and his family, but also for the incredible families out there whom I’ve worked with, and who deal with these issues, day in and day out.

It also deepens my already gigantic admiration for my parents, because it is only through their love that I learned to love our very special village.

Get this book!  Share it with the World!

two trucks on the road