Should I get a psychological evaluation to rule out ASD? (Part 1)

Questions like this one are very common in my circle. The main driver of this question is the underlying fear:

Is it possible to misdiagnose autism or ASD during early childhood?

The answer is: Yes, absolutely! To understand the how and why autism may be misdiagnosed, I think it is best to understand the process and the issues associated with it, so that we can better understand how to move forward.

Let’s look at the whole process, shall we?

What happens first?

One of the most difficult questions for parents to answer is whether they would like to receive a psychological evaluation for their young child. Even though this is a simple yes or no answer, the majority of parents that I’ve worked with are baffled or just simply confused by this question.  This is a question that parents may be asked at different times during the early intervention years.  Sometimes it occurs as early as during the initial meeting, before any services are even provided.  Other times, it is a questions posed by different member of the therapeutic team.  Sometimes, this question gets asked at multiple times by different people. 

But what does this mean?

A psychological evaluation done within the context of early intervention serves one main purpose:  to either diagnose, or rule out the diagnosis of ASD. Perhaps an evaluator suspected that this may be the case, and the questions gets asked at the initial meeting, or perhaps a therapist feels that a diagnosis is the best course of action, hence the question to the parents.

For the most part, when parents hear the words “psychological evaluation,” they become anxious. This happens sometimes because there isn’t enough time spent on explaining exactly what this means. Sometimes, parents themselves are too shocked to even ask any questions. And some other times, parents feel “pushed” to make a decision, shut down, and no longer ask questions.

In my almost 20 years as an early interventionist, I have seen the gamut:  I have seen parents whose children would benefit from an evaluation, but the parents did not consent to one, and I have also seen parents whose children were clearly not on the spectrum, but were pushed to get one.  The result?  Children with autism that do not get what they need right from the start, but also quite a few children without autism who receive diagnoses (or misdiagnosis) of ASD out of pressure and get therapies that are less than ideal for them.

What happens after the diagnosis?

What happens next typically depends on decisions made at family planning meetings after evaluations are completed.  In general, Applied Behavior Analysis is offered as a method, often, but not always, at the direction of a special instructor (a teacher trained in special methods and strategies).

Parents normally ask me about this type of methodology, wanting to know my personal opinion of this method. I often respond that the methodology need to fit the need. I often remark that even though a cold and the flu may look alike, only the flu gets an antiviral prescription, not the cold. Similar ailments do get different courses of treatment. The same is true of ASD and other conditions.

I’m not sure, what should I do?

If you are not sure, sometimes it pays to wait just a few months (2, 3 or 4, but no more than 6), and observe your child. Consult with your team. Read up on the subject. Talk to family. Let the current intervention work. Do all the carry over homework that your team suggests you do.

But most importantly, listen to yourself. Listen to your heart. I always listen to the moms and dads I work with. They are my BEST RESOURCE!

Stay tuned for more information. And as always, leave me a note with any questions.

Boy sitting holding a pink toy

Cheers!

Dr. Klimek

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When the Bully is Your Boss: Breaking Free of Toxicity

It will soon be a whole year since I turned my life around. Yes, I broke free not only from my bully boss, but also from the bully mob: Those that were once my friends but preferred to secure a paycheck rather than their own dignity. My work week consisted of never ending work days that had no substance other than securing a paycheck.

Does this resonate with you? Since I left my job, I realized that breaking free from the bullies not only means planning your exit, but also dealing with the abuse in your own mind so that you can turn every obstacle into an opportunity. Does the bully tell you that you will never amount to anything? Amount to EVERYTHING: Be so successful that you exceed your own goals and expectations. Does the bully threaten you with your job security? Learn that no job is ever secure, and take steps to find security in work for yourself, not at the whims of someone else.

Turn every challenge into an opportunity!

The truth is, if you have become the bully’s target, it is possibly because you are actually perceived as a threat by the bully (Tip: If you have ever seen the movie Mean Girls, you will recognize this by the way that Regina George treats Cady). Bullies rarely pick on employees who they don’t perceive as targets: They pick on those that they perceive as threatening.

But even this is not a rule. There are bullies everywhere, and the workplace is not an exception. In fact, the Workplace Bullying Institute, 37 percent of American workers are targets of bullying, while nearly half (49%) are affected by it in one way or another (by witnessing it, for example). That is a really high number!

If you have been bullied at work, by your boss, none of these statistics will matter. What matters is to keep you sane, safe, and give you the tools to execute an exit plan, while you continue to work in a toxic environment. Yes, you will be gaining strength while planning the exit.

How do I know this? I did this myself. I tried everything to try to stay in my job of 21 years. It was a large department that brought me a lot of happiness the first 18 years of my work there. The last 3 years, however, were nothing but miserable.

In the end, I decided that the best alternative for me was to move on. I was very afraid that I would not be able to support myself, let alone be successful. So I crafted a careful plan and set it in motion. Here I am, almost a year later, much more successful than I could have imagined.

Do you want to know more about my experience and learn more about what you should do to finally break free of your bully boss? Sign up and I will keep you posted!

And please stay tuned as I prepare to launch a new feature as the one year anniversary of my entrepreneurship approaches: June 15.

Cheers!

Man and woman at a cafe
My husband and I enjoying the work-from-anywhere environment: Sitting at a cafe in Buenos Aires.

My Son’s Disability is Invisible. On Mother’s Day, I Celebrate

Guest post by Stephanie Duesing

Disclosure: The post below may contain affiliate links.

I didn’t know my son Sebastian until he was fifteen. That was the year we had our first real Mother’s Day celebration. We lived in the same house together for fifteen years, so don’t misunderstand. I gave birth to him. I changed his diapers and taught him to ride a bicycle.

I was a stay-at-home mom, and he was my only child, but I didn’t know him. We spent hours together every day playing and doing crafts together. He painted the most extraordinary pictures even as a toddler. His existence filled my imagination from the moment that I looked at the faint blue positive mark on the pregnancy test, but I still didn’t know him until he was a sophomore in high school.

Now Sebastian is eighteen, and every time he hugs me I can still feel the shell of his tiny newborn ear against my lips and his infant body in the nook of my shoulder where his chest meets mine. I always inhale, trying to recapture that baby smell and the tickle of almost invisible hair on my lips. His hair is now thick and smooth, not the dandelion fuzz of pale blond.

He still hugs me every night before I go up to bed. Even after everything, especially after everything, Sebastian tells me that he loves me. Now taller than me, when his long arms reach around my shoulders and he leans in for the hug, I can still feel his little sneakers banging my hips and his little toddler arms hugging my neck. I smell the ghost of Cheerios-past every time. I hear his child’s voice whispering,”You are the best mom in the world.”

In the car when we talk about the things we’ve been through together, about how I finally came to know him when he was fifteen, I reach my hand out to him. Sebastian’s cool, long-fingered artist’s hand lands in mine, squeezing. In his gentle adult grasp I feel the ghostly hand of a child in mine, much smaller.

I cherished every sweet moment with him. Every hug, every smile, every game of hide and seek. I rocked him to sleep each night when he was little. We read aloud together until he was twelve. He still hates Les Miserables. Tolkein was more his thing, with the dragons, wizards and the magic ring that makes you invisible but also drains your soul.

What magic ring did Sebastian have that cast its spell so thoroughly over him, that it silently saved him while killing his soul? Surely it was not the cloak of invisibility that he wore all through his childhood as he zoomed through my house waving his wand. He was Darry, King of the Fairies and Professor of Defense Against the Dark Arts. He cast his charm all over so thoroughly that I didn’t see him. I couldn’t see him.

Nobody saw him. You see, Sebastian is the only person in the world known to see with words like a dolphin sees with sound. His blindness is an invisible disability. He has always slipped through our sighted world with what appeared to be the same ease as a spinner dolphin flying through the air.

I remember his eyes, so bright blue and filled with pain as we both sobbed on the kitchen floor. It was January of 2017 and we had just discovered that fifteen-year old Sebastian couldn’t recognize his own face and had taught himself to navigate our own home by counting his steps and turns. I had to tell him that he’d been born blind, not understanding how it was possible myself.

Now I am privileged to see the man who walks through this world with dignity and grace. His dry, laconic humor cracks me up, and his striking art inspires me. With his help and support, I am fighting to end the discrimination against the millions of people who have cerebral/cortical visual impairment. CVI was identified as the number one cause of visual impairment in the developed world more than ten years ago and still doesn’t have a diagnostic code. On Sunday, May 10, 2020, I will celebrate my fourth real Mother’s Day as Sebastian Duesing’s mom. I was always his mom. I just didn’t see him.

About the Author Stephanie Duesing is the author of Eyeless Mind: A Memoir About Seeing and Being Seen, a true story about the discovery of her son Sebastian’s almost total blindness at the age of fifteen.

Stephanie is devoted to raising awareness of Cerebral/Cortical-Visual Impairment (CVI) and advocating for patients with this prevalent but largely unacknowledged cause of visual impairment.  A music educator, Stephanie has taught elementary and middle school music and chorus, as well as private voice and piano. She also opened her own Musikgarten studio, where she taught classes for families with babies, toddlers and preschoolers. She’s a graduate of University of Illinois at Urbana-Champaign and lives in the western suburbs of Chicago.

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