Dealing with Disabilities During Quarantine

Disabilities in the times of Covid-19.

How has this quarantine influenced your daily life as a family member of an individual with disabilities?   I feel that these uncertain times have brought out the best and sometimes the worst in people.  It has exposed what connects us as humanity, but it has also shown us what divides us.  For many of us, those of us who live with children or adults with disabilities, this Covid 19 stay-at-home has been nothing short of challenging.

In my case, I have had to come face to face with my fears.  And yes, I was confronted with the very common fears of getting sick and dying, but I have also been confronted with the very real fear of losing all of the gains that I have worked so hard to secure for my brother, namely,  to be accommodated, to be included, to be understood, and to be valued as a human being.  My brother is an adult with multiple disabilities, who needs assistance for daily living activities, and needs help navigating what the rest of us may call mundane.  He finds it impossible, for example, to wear a mask in public without avoiding the feeling that he is choking to death. 

I have been in communication with my friends around the world, who are struggling to keep their children or adults with disabilities active, focused, and who are doing whatever they can to prevent the isolation that is so common in our population.  While many parents all over the world are struggling to make distance-learning work for their young school age children, families of children and adults with disabilities are struggling to hold on to the gains that they had already attained in society. 

On the other hand, it may be frustrating to see how quickly society reorganized to accommodate for this pandemic, as many of us shifted to working from home.  Working from home had been repeatedly requested by our colleagues with disabilities around the world, and most times not granted, forcing them to have to adapt themselves to a world that was not created with their needs in mind.  We are quickly seeing how the wheels have turned to accommodate society “at large.”

We also struggle because although we understand why these new guidelines were put in place, and how dangerous it could be not to follow them, we cannot avoid a feeling of déjà vu when it comes to safeguarding the rights of our loved ones.  We are constantly caught in the middle of conversations, but we are not always able to raise our voices loud enough to be heard.  I remember distinctly how the “gender-only” bathroom conversation was so personal to me.  After my father passed away, my mother became my brother’s only caregiver.  So, when my brother needed assistance in the bathroom, was she to do it in the ladies ‘room?  Or in the men’s room?  There is no conversation that does not include our population whether we recognize it or not.

So perhaps while we are sad about how much we miss our shows, going out for dinner, or travelling, all valid reasons to feel blue, let’s for one moment think of our fellow human beings with disabilities and about how we can make this place one that includes us all.  Let’s remember that they, too, want to see shows, go to dinner, freely ambulate the streets, and travel. 

Mother with her adult son.

Please let me know how you are feeling by dropping me a note below.

Making the Best of a Sad Day

Life in the times of Covid 19.

Today was supposed to go like this: I would get up early, after spending well into the wee hours of the night making sure that every detail at the apartment is taken care of, and I would run to the airport to get my mom and my brother. Instead, none of those things happened, as we are hunkered down in our homes, patiently waiting for this pandemic to ease out.

Although I have always been a fan of “regular days,” this particular regular day is a bit sadder than it should be. I can’t help but think about all the things that I was supposed to do, all the plans now discarded, the hugs not given, the laughs not exchanged.

However, in the midst of all this, I’m also content, calm, accepting. I’m content, because I know what love is, what it feels like. To experience pain is to know love. I’m calm, because this quarantine has forced me to look inward, as it should be, and to obtain the quiet that being, and not doing, entails. And I am accepting, because this is a reality that no one can change, no matter how hard we try.

I am also very grateful, for the beautiful special families out there, for granting me an opportunity to be part of your lives and to share mine with you.

Compassion is the Answer

It’s all the little things…

This past weekend, I had this nagging, uncomfortable feeling.  Sometimes when things aren’t right, you can’t make them right, I thought.  You can exercise every day to your favorite tunes, with the on-demand app that you have been given since your exercise class suddenly closed, but you can’t dance next to your friends.  You can raise a glass and toast over a WhatsApp reunion, but you can’t hug your friends on the other side of the screen.  You take a walk, and you realize how many stores have closed.  I mean, not just temporarily or during quarantine.  These stores are permanently closed.  Sometimes the financial burden is too much to bear and retreat is the only way out.

Someone told me that there will be a before and after.  This pandemic will change our fabric forever.  Sometimes I wonder, will we be able to regain our sense of community?  We are connected more than ever, yet this is not where our minds take us when we think about others.  We look at our neighbors with suspicion.  We look at the next person in line at the grocery store with disdain.  Are we learning to be more compassionate or are we learning to be more self-centered?  I hope the former and not the latter.

These thoughts were making me so sad that I began to look for a way out.  Would watching a good movie change my mood?  A new video chat with friends?  How about spending some money on something new?  Then it hit me, nothing that I could do about the situation will change it.  These things will make me feel better for some time, but they won’t make me feel better in the long run.

I decided to meditate, long and hard, to find the stillness and acceptance that I needed.  It turns out that accepting this new reality is perhaps the best way to cope and deal with it.  “Life is suffering,” the Buddha offered, and found it to be such an overarching reality that he called this principle “the first Noble Truth.”  We suffer because people get sick, die.  We suffer because we are separated from those we love.  But more than two thousand years ago, the Buddha taught that no matter how hard we try, we cannot avoid getting sick, getting old, dying, and being separated from the ones we love. 

My challenge for everyone out there is to take this new reality, understand that it is life staring at us in the face, making us look at our own nature, and accept each one of us as we are.  Part of this is to be compassionate, as not only will your fellow humans go through this:  You will go through this as well.

I once heard a Buddhist teacher say “treat the glass as if it were already broken.”  If we see each other as vulnerable, fragile, prone to getting sick, dying, we would be much more compassionate with each other.  We normally forget this reality, until a loved one falls ill or dies.  Let’s not wait until then. 

Compassion is the answer.

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?

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!

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

The Long Blink: A Must-Have Book

This post may contain affiliate links. At no additional cost to you, I may earn a commission to help keep this site running.

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

The Need for More Accessible Travel: 3 Important Areas to Consider

I just bought airline tickets and , as a result, experienced the frustration of having to pay more to be able to 1) pick a seat, and 2) check a bag.  For one of the flights, I even had to pay more to get a meal on the plane!  I was so frustrated!  However, my frustration cannot compare to the everyday frustrations of people with disabilities trying to navigate the necessities of travel.  There is no question:  There is a need for more accessible travel.

Travelling as a person with disabilities is not an easy feat.  It is a proposition that carries with it a great deal of preparation and stress.  I know this firsthand because my brother, who is a big and tall man in his forties, and has multiple disabilities, travels at least twice a year.  He, along with my mother as his companion, have experienced the stresses of navigating travel.  Having gone through this experience with them, time and time again, and having helped others navigate airports and airlines, I can relate to these experiences.

What are the issues that face most travelers with disabilities and their families?  The list is extensive, but for right now we are going to focus on the few issues that have affected my family the most.  Here they are:

  1. Accessible/Unisex bathrooms:  Most airports in the United States, and most abroad, have gender-specific bathrooms with a stall which is dedicated to someone entering in a wheelchair.  This is a good start, but it is certainly not enough.  How would someone that needs diapers changed be able to use the bathroom?  Changing tables are only for babies.  What about someone that needs assistance to use the bathroom?  A good number of individuals with disabilities need assistance flushing, sitting, pulling up their pants, etc.  My mother has a very difficult time every time that she needs to go into a “Ladies Room” with my very grown brother who needs assistance to use the bathroom.  She is always afraid that someone would “report her.”  We need accessible-for-all, stand-alone, unisex bathrooms in every airport terminal!
  2. Accessibility to Family Members to accompany even if not travelling:  My experience here in New York has been very positive with the Special Assistance personnel who help wheel my brother around through the airport, but assistance goes beyond that.  My mother needs more help than just someone who helps wheel the wheelchair.  She needs the emotional support that only a family member can provide.  I have been lucky enough (shout out to American Airlines at JFK Terminal 8!) to be able to obtain a gate pass every time.  Thanks so much to those employees that have seen this need and have processes my request!
  3. More accessibility inside the actual plane: I can always get a vegetarian meal, but once I tried to get a pureed meal for my brother and there was no such meal available! How about seats that are more ADA compliant?  My mother has to pay extra in order to get the more comfortable seat on the plane, where my brother barely fits.  I have heard other people who have to do the same.  How about more availability of ADA compliant bathrooms?  The only ones available right now are typically in first/business class and most people do not know that they have a right to use those, struggling to get themselves to the bathroom and using it with dignity.

These three areas are by far the ones where I have not seen consistent improvement.  I admit, there are many areas where I have seen improvement over the years.  Only ten years ago it was almost impossible for me to request and be granted a gate pass when my brother traveled.  Today (thanks to American Airlines at JFK Terminal 8!), I am able to accompany and help my mother all the way through the gate.  My brother’s experience has become more accessible just because of this improvement.

What are the issues that you have during travel?  Drop me a note and let me know! Let’s make accessible travel a reality!

view of a wing of a plane

The Manager Mom Epidemic: Book Review

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When I first picked up a copy of this book I expected it to be descriptive of what I have been observing lately:  Households where the mom is in charge of everything, in other words, the phenomenon that Dr. Thomas Phelan calls “Manager Mom.”  However, I was very pleased to find out that this book includes not only a description of what the phenomenon is, in detail, but also offers many examples and suggestions on dealing with this situation at home.

What is a Manager Mom?  In short, it is a mom that does it all:  The childcare, the cleaning, the food preparation (which includes buying and cleaning up afterwards), the laundry, the appointments, the after-school activities….You get the picture.  How did this happen?  How is it that moms are the ones who bear the burden of everything household related?  Dr. Phelan refers to the original bond between mother and baby as well as the strong message that has been passed down from generation to generation, from mom to mom, as the culprits for this type of behavior.

In fact, Dr. Phelan calls the strong identification with “mom duties” as Mommy ID, and explains how moms tend to feel a strong sense of guilt when their perceived “responsibilities’ are not taken care of (by them!).  This concept was quite enlightening to me as I often hear moms tell me that if they don’t do it all, things don’t get done “right.”

If you feel this way, then this book is for you.  If your family falls in what most people call “traditional,”  mom takes care of all the responsibilities in the house, whether she works outside the home or not, and dad works outside the home but does not contribute to household duties, then this book describes you.  If you are tired of living like this, and would like more “me” time or you are a dad or a partner who would like to be able to make decisions and share the burden of responsibility, then this book is for you.

You will find many actual examples of couples that have moved from what seemed to be the tiring routine of the house to a schema that works for everyone!  It is possible!

To pick up a copy of this book, please click here.

We All Benefit When Work is Shared!

As always, if you have any comments or questions, please drop me a note.

Thanks!

Dr. Klimek.

3 Frequent CPSE and CSE questions answered: New York City Parents

It is not secret that growing up is hard to do. Try seeing your kids grow up: It is extremely hard. Now add special needs to the mix, and you get a very, very difficult situation in your hands! Why does this happen?

Change evokes anxiety in everyone. Some people are more equipped to handle this type of anxiety and have developed adequate coping mechanisms. For many of us, any change in our routine can be very stressful, and a child growing up (in some cases too fast!), can be a source of insurmountable stress.

Let’s just say that the educational system as it is does not make it any better. In New York City, children move from kindergarten to first grade, from fifth grade to middle school, and from middle school to high school in a blink of an eye! Parents can’t keep up with all these graduations, moving-on ceremonies, and yes, applications.

For families of children with special needs, transitions are especially stressful as they need to attend evaluations and meetings during these times. In New York City, parents can easily get confused with these procedures.

As a special educator, special family member, and advocate for people with special needs, I often have to answer questions from parents who are worried about what happens when their children get older. Let’s review three of their most common questions and explore possible answers:

1) What happens when my child turns 3 and no longer receives early intervention services? With parents’ consent, children receive an evaluation that will get them ready to start a program at that time. If your child qualifies, she/he will be eligible to get an extension of the services he already receives until she/he starts the program!

2) What happens when my child turns 5 and can no longer attend his/her preschool program? With parents’ consent, children receive a new evaluation, and a new program (for kindergarten) will be determined. Technically, most schools should be able to serve most students with special needs. However, if this is not the case, a different program will be selected. This can be a difficult process and parents do well in pursuing the help of a professional at this time.

3) Can I still submit and application for Pre-K or Kindergarten, even if my child had an evaluation? The answer is yes! Whether your child will attend one of these programs will depend on what his/her needs are, but you can (and should) make sure that you submit those applications. We never what the future has in store. This will ensure you cover all bases!

Family having dinner.
Dr. Klimek and her special village.

If you have any questions or comments, please drop me a note!