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.

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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.

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

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!

Dr. Vanessa Lapointe’s latest book: Parenting Right from the Start

It was nothing but refreshing to read Dr. Lapointe’s professional take on attachment and development.  Let’s just say that many of the ideas that she talks about in her new book Parenting Right from the Start are the very same ideas that I have been teaching my families for quite some time.  This is all especially true when dealing with special needs families, and at the same time, harder to crystallize.  It is worth pointing though, and I can firmly say that this will be one of the first books I will be recommending to my families from now on. 

The wholistic, and at the same time, individualized approach that she teaches the families she works with very much approximate the message that I try to instill in the families that I work with, namely:

  1. You got this!
  2. Don’t let fear of judgement by others take over!
  3. Don’t let judgement of yourself take over!
  4. Relax and enjoy the ride!

My knowledge is not only based on years of experience but also on years of working on the connection between Eastern and Western thought.  I can only summarize it with what a parent told me this morning, as we were talking about his daughter’s traumatic past, “worrying and dwelling are like a rocking chair, they give you something to do but you won’t get anywhere with it.”  Those wise words carried me through the day, and they can get you through the worst crises as well as the not-so-terrible ones:  temper tantrums, defiant behavior, resistant behavior, and normal developmental challenges that all parents are exposed to. Did your child have a tantrum?  Did you yell when you shouldn’t have?  Forgive yourself and move one.  Learn from this experience and take a step back next time. 

Parenting Right from the Start focuses on exactly what the title claims:  Parenting way before you decide to have children, but in a non-judgmental, caring way.  It explores common milestones from the parents’ point of view and from the child.  It teaches parents to look at the world through the child’s eyes.  The result is a more confident parent who is in control and understands that it is normal for parents to feel overwhelmed sometimes.  It teaches parents to deal with those feelings of defeat and provides an avenue not only to help the child grow, but to help parents grow.

To get a copy of this book, click here.  The paperback is out on October 8th, 2019. 

Highly Recommended!

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

Cheers!

Dr. Klimek

This post may contain affiliate links.

Victoria’s Voice: Book Review

I recently read Victoria’s Voice:  Our Daughter’s Wish to Share her Diary and Save Lives from Drugs.  I have to admit, it was tough for me to even pick it up and start to read it.  Don’t get me wrong:  I’m an avid reader, but to read the diary of a young girl who had died of an overdose and to have her parents, through their agony, share their experience, was an emotional adventure.  Victoria was only 18 years old when she passed away.

The book is a very personal account by Victoria’s parents, David and Jackie Siegel, of what their daughter was like and the experience of emotional stress that they went through as they saw their daughter struggled with anxiety, addiction, depression, and anorexia, and the inevitable fallout that all of these issues led her to.  They also share the agony of their daughter’s passing, and the struggle to figure out their next steps, as they tried to make sense of such a tragic event. 

It was right after their daughter’s death that the Siegels received a text from Victoria’s friend that changed the trajectory of their lives.  Victoria had asked this friend to share the text with her parents, in case she ever died.  In this text, she directed her parents to search for her diary, and to share it with the world.  The Siegels struggled with this decision, but ultimately they decided not only to share her diary with the world, but to become educators and advocates, so that no other parent would have to go through what they went through.

They shared that since their daughter’s death, they learned so much.  In fact, they wish that they would have known what they know now before Victoria’s passing.  They can’t turn back the clock, but they can help save another family from tragedy.  They want everyone to learn about this issue so that it is not too late for a family who is experiencing this issue.  They want everyone to recognize the signs:  Addicts can become very good at hiding their addition.  They want everyone to advocate for a safer environment for young lives. 

David and Victoria Siegel have worked tirelessly to promote laws that protect children, implement ample access to Naxolone (a drug that can save lives from overdose), and advocate for safe-keeping of even day to day drugs.  They have testified before Congress and have advocated for more comprehensive rehabilitation for individuals who are suffering from addiction. 

Victoria’s Voice is full of insight.  I recommend it as a family reading.  Families who are going through the pain of addiction are very special families that need the support of our entire village. 

If you are interested in the book, you can buy it here.  Proceeds from the sales of the book benefit the Victoria Siegel foundation.  Please visit their website (here), to learn more about drugs, addiction, the Siegels, and their advocacy, or simply to get help.

Victoria Siegel

Thanks!

Recommended Products and Activities

Hello families out there! Welcome to the new section of this blog for Recommended Products and Activities that are useful and relevant for our families!

One of the most frequent questions that I get asked, and very often, is what kinds of products I recommend to optimize children’s learning.  Of course, I have an arsenal of answers, depending on the child’s needs and the family’s need. 

I will be dedicating this section of the blog to those products that I find most helpful, and will be talking about tips and strategies related to those products.  And why not, I will also talk about products that I have found useful for PARENTS!  Yes, you busy parents out there!  We will talk about the latest or the most relevant movie, book, and even vacation.  We will talk about activities that you can do by yourselves, to celebrate the incredible families that you are, and activities that you can do as a special family, paying special attention to places that are accessible to our children.

Please check out this section.  Updates will be posted shortly!

Notebook, pencils, watercolor, and scissor
Tips on what to buy and what to do!

The World Through the Special Parent’s Lens: Solid Advice for Well-Meaning Friends and Family

The other day my husband and I were preparing for the upcoming holiday season.  Yes, I know what you are thinking.  The summer isn’t over yet, and we are already talking Holidays?!  Let me explain.  Our combined family is large, and I’m not only talking about our wonderful immediate, blended family.  I’m talking about all of what that implies:  my family of origin, his family of origin, my daughter, his sons, their families, our foster daughter, and their respective families.  In addition to that, we both have the “package” of a previous family.  As you can probably see now, there is a great deal of planning required.

One of the factors that goes into planning for this type of get-together is the fact that my youngest brother, Fernando, who is now 40 years old, is an adult with developmental disabilities.  Why is this a consideration?  My brother is an adult in many ways but cognitively, he behaves and sees the world more like a 2-year-old child would.  He claims spots as his own (for example, the couch in front of the TV), does not want to share (don’t even think about taking his remote control), and can watch TV for hours! (dare not change what he’s watching!).  In addition, he still needs help for certain activities of daily living that most of us take for granted, like going to the bathroom or eating a full meal without spilling anything or staining his shirt. 

This is a huge source of stress for my mother, who in a way, sees herself as the perpetual mother of a toddler who just happens to be really big in size.  This is, of course, a major consideration of when, where and how we plan our events.  Hence, the need to plan for Thanksgiving well in advance, especially when huge family crowds are expected. 

As I thought about Thanksgiving and how to make it comfortable for everyone but especially for my mom, I was reminded of the winding road that brought me to this place of kindness, understanding, and non-judgement.  The road that brought me here was a surprising contrast.  It took me quite some time and some tears of my own to understand, really understand deeply and without judgement, what it means to be the parent of a child with disabilities.  No matter how old that “child” is, he/she will always be a child for those parents.

A group of people are gathered around a table.

This year my mom and brother will be in town for Thanksgiving, as they normally are, and like many years before, we will be flooded with well-intentioned family members and friends, that will want to celebrate Thanksgiving at their home, and I will have to explain, one more time, why this is not a good idea.  I will feel bad saying no, and they will not understand why, even with their kind offer of giving up a couch, a TV, and even a remote control to my brother, I’m still saying no.  The truth is I totally understand their perspective, but I deeply understand my mother’s too.

Here is some advice and wisdom that may help the lay, well-intentioned person, family or friend, understand their special-family loved one:

  1. Special parents feel judged.  If you take away just one piece of advice from this piece, please let it be this one.  Special parents always feel that the world thinks it’s their fault.  Parents typically experience feelings of guilt when things go wrong in their children’s lives, when they see their children suffering.  Somehow, parents think if they could only…(fill in the blank).  And to top it all off, I have heard many well-meaning family members and friends inadvertedly judge those they love by pointing out that things could be better if the parent just did something differently.  So when you feel like your friend or family member is not listening, has put up a wall, or is rejecting your advice, remember that this parent may be receiving the feedback as a judgement.  Be patient and understanding.  Ask the special parent how it feels.  Let them tell you what is like to be in their shoes.
  2. Special parents feel most comfortable in their own environment.  We all in one way or another can’t wait to “get home” at the end of a difficult day.  No matter where home is, it is a symbol of rest, peace, and individuality.  For a special family, the role of this special haven cannot be underestimated.  Their environment may be accessible and may have accommodations that make life easier for the special family.  When they say they prefer to meet at their place, understand that they may not be rejecting your invitation, they are only asking for an accommodation to be able to enjoy themselves a bit more freely.
  3. Special parents feel misunderstood and isolated.  Feeling misunderstood is a consequence of feeling judged.  This is a particularly serious feeling as it may lead to depressive thoughts and the consequence of not only feeling isolated but becoming isolated.  If you have a special parent in your life, pay attention to these feelings. 

In short, my advice for all of you out there, friends of our very special village, is that if you have a family member or friend who is a special parent, please be there to understand, support, and lend a hand.  Should you still say what you think, give advice, and lend your opinion?  Of course!  Your relative/friend really needs you, all of you.  But just be aware of what may be happening behind the scenes, so that you can be more present and more whole to support your friend.

Eight people standing under trees.

If you have any questions, drop me a note!

Dr. Klimek