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!

Should I pursue a diagnosis for my young child?

When it comes to getting a firm diagnosis for their children, I often get two types of reactions:  1)  Absolutely yes!  This way, we can get all services as soon as possible, 2) No way!  I don’t want to put a label on my child unless it is absolutely necessary.  What happens when children are younger than 3 years old and this question becomes central?  Let’s explore some possibilities.

  1. What is the right thing to do?  The right answer depends not only on the child but also on the timing.  Typically, for very young children, when the parent is undecisive I advise to wait a little while (somewhere between 3 to 6 months), and make sure that we get solid intervention on the part of the intervening team (special instructors, occupational therapists, speech therapists, physical therapists, etc.) and the parent/s.  Of course, sometimes even waiting as little as 3 months to let intervention produce results seems like a very long time.  This is when it becomes evident that even with the strongest intervention, without the proper intervention, will not suffice.  I have had situations where I clinically know, after meeting the child and working with the child for a short time, that he/she will have difficulty responding to treatment.  In these cases, I suggest we move forward and pursue a diagnosis.
  2. My child was just diagnosed, now what?  Now is the time to look at all the options available to you through that diagnostic lens.  If your child was diagnosed with ASD (Autism Spectrum Disorder), then you may have access to certain school programs and to the specialized expertise of ABA (Applied Behavior Analysis) teachers, who will tailor programs specifically for your child.  If your child was diagnosed with Cerebral Palsy, for example, you may be able to access equipment that may become central to any gross or fine motor work later on in your child’s life.  Whatever the diagnosis is, the specialized treatment will follow.  I like to compare treating children with treating the flu vs. treating a cold.  Even though some of the symptoms look the same, we treat the flu differently from what we would treat a cold.  The flu is much more severe, and it requires a specific intervention!
  3. I’ve decided I want to wait, or not pursue a diagnosis at all, now what?  Remember that the intervening team will still continue with provision of services, as the needs of each particular child is what drives this service provision, not the diagnosis itself.  In many cases, it is not necessary to pursue a diagnosis.  The child’s needs are self-evident and sufficient.  They are enough to carry out an intervention.  In the flip side of the above example, we wouldn’t treat a cold with the same medication that we use for the flu.  It is simply unnecessary and would not work!

Of course, as with anything else that requires careful consideration, it is important to do a lot of learning, consulting, and above all, soul-searching, before embarking on this route.  One thing to keep in mind is that nothing is written in stone, and a decision that you make today, you can take back tomorrow.  (We will have a course on parental rights.  More on this coming soon!). 

This is an important topic and we will continue exploring all the ramifications of each decision.  If you have any questions or comments, please drop me a note!

Sometimes, no diagnosis is needed to design a quality intervention.

Living a Life of Purpose: New Year Reflections

“I could be lost inside their lies without a trace
But every time I close my eyes I see your face ” Sting, If I Ever Lose My Faith in You.

It seems somewhat incredible, unbelievable, that it has already been over 6 months since I cut ties with my employer of almost 22 years and became self-employed.  Let’s just say that the writing was on the wall, or rather, it had been on the wall for quite some time.  I had never been a firm believer in signs or the universe sending a message, or things of that nature,  but in this case, the message was loud and clear:  It was time to let go.

Now, I had always thought that if I was ever to leave my employer of so many years, it would be for something worthwhile.  In my case, “worthwhile” meant making the jump from employee to entrepreneur.  What I didn’t know at the time was that six months in, I was going to find so much happiness, fulfillment, and sense of purpose doing what I currently do.

 A year ago, I had insomnia, and  could not sleep for days, from the stress that my job caused me.  I lost weight and was put on medication to manage symptoms of PTSD.  This year, I lay awake at night just reflecting on the incredible things I get to live day by day.  Life has certainly changed, and I am extremely thankful to those who “wrote on my wall,” as they, in their quest to make my life impossible, managed to make it incredibly purposeful.  Sometimes the Universe does work in odd ways.

And if you think that money is the reason I’m saying all of this, you’re wrong.  Even though I have been very fortunate in that department, I can honestly say that the reason for this incredible emotion is the fact that for the first time in my life, I get to do, every single day, and every single moment of the day, what I believe in, what I love to do. 

These emotions became all the more clear in during the last two weeks of 2019.  Each end of the year and beginning of a new year tend to mark a tone of reflection.  This was especially true in my case, as I was able to spend those days making connections that will last a lifetime and will truly make the world a better place. I welcomed the new year in a completely incredible, positive, and new-for-me state of mind. 

I was also lucky, very, very lucky to be able to spend those days surrounded by family and friends, the kind that love you no matter what and support you always.  I could almost hear my late father whisper in my ear “I told you so,” so many times.  He will always be my guiding star and my inspiration.  He used to love the song by Sting “If I Ever Lose my Faith in You.”  We used to sing it together.

Dr. Klimek and her family

Dad, wherever you are, thank you for never losing your faith in me. Thank you for showing me the way, always.

Listful Living: This book by Paula Rizzo will have you living your best life!

This post may contain affiliate links.  At no cost to you, I may get a commission if you click a link and make a purchase.

When I first saw this book’s title, Listful Living, I immediately thought “a book about making lists.  I’m in!”  I was captivated.  After all, who couldn’t be better organized?  More efficient?  As a new entrepreneur, I value efficient use of time, and completion of tasks in a timely manner. I also recognize that as I approach the 6-month mark as an entrepreneur, my responsibilities have only grown, but my 24-hour day has remained the same: Still 24 hours!

Little did I know that Listful Living was much more comprehensive than that.  If you think that you will be making “to-do lists,” please note that this is not what Listful Living is about. This book is about taking a realistic look at your life, evaluating it by being able to set your priorities, from top to bottom, and envisioning where you want to be a year from now.  This book is about action.

In fact, Listful Living has pages and pages of “homework” to help you visualize what’s already in your mind.  Putting it on paper is a kind of agreement with yourself, and it really helps to pinpoint where you are, where you want to be, and the way to get there. It sounds like work, but it will only save you time, energy, and will allow you to make your priorities a reality.

Listful Living by Paula Rizzo

As I read, I felt strongly connected to the author’s experiences, Paula Rizzo, as she described having visualized a better future for herself, realizing this future, and then having to step back to make room for her life and her priorities.  Sometimes, it takes a door closing to realize that the window was opened all along.  In Paula Rizzo’s case, it was a real health scare that landed her in bed for weeks.  In my case, it was the professional realization that if I stayed where I was, things would never change.  I had to produce the change myself. I had to BE that change.

Listful Living is the perfect gift for yourself, for busy moms and dads, for working parents, entrepreneurs, or simply anyone who wishes to improve their lives by being realistic, simplistic, and looking to a better, more fulfilling future.

Here’s to a more fulfilling, rewarding 2020!