In my years of practice, I have been asked this question over and over again. And if you have visited my YouTube Channel, you have seen the recommendations that I have made. Now that schools in New York City are closed again due to the rise in Covid-19 cases in the city, this is a question that has come back with a renewed urgency.
How do I keep my children from fighting when I have to work from home?
One of the first tools that I suggest when parents tell me that they are having difficulty with their children at home, is the use of a behavior chart. At its core, the behavior chart is really a reward (reinforcement) chart that keeps track of children’s responsibilities at home and helps build responsible behavior. If you use this consistently, it really works!
You can find effective, cost-effective behavior charts here and here.
Don’t forget to leave questions and comments! Do you need a recommendation for a particular toy/product? Please let me know.
“Friends are the family you choose,” my parents would often say when I was young. As we moved to New York from Buenos Aires, those words became so incredibly real to me. Being away from my relatives made me look for that warmth and closeness in other places, and as my parents predicted, I found it in my friends.
As a sibling of a child with disabilities, it was always my “job” to be guarded, and to vet every single person that we met. This was a responsibility that I somehow assumed for myself and took seriously. This meant that it was always difficult for me to have a large group of friends. I always preferred a small, but remarkably close group. I was always protective and picked my friends wisely.
My lucky stars must have aligned the day I met Nelly, a September morning in 1997. I probably should also thank our daughters, Iliana and Carolina, for having sat together that day in kindergarten class! Needless to say, that spearheaded a friendship that would stand the test of time. But through all this time, there was something that really stood out about Nelly, who became like a sister to me, her daughters Iliana and Ivana, who are like my nieces, and their late husband and father, Anibal: Their ability to understand my brother, love him for who he is, and the desire to be of service to those like him.
I really have no words to express my gratitude to them. They allowed their love for my brother to serve as a guiding principle in their lives. I never had to pretend to be anything around them. I could be myself. I could express my doubts and my fears. And most important of all, I could blindly trust them with my brother’s life. After all, they designed their lives around children and adults with disabilities: Nelly, Iliana, and Ivana all work in the field, in different capacities, and make a huge difference in people’s lives daily.
And when I say they make a difference, I really mean it. They really, really do. They all participate not only in their professional capacities but also bend over backwards to advance the rights of people with disabilities around the world. They fight for access and inclusion in every area of life. They do this because of their love, commitment, and passion for what is right.
Nelly, Iliana, and Ivana, thank you for being who you are, and for your respect, love, and dedication. I am proud to call you my FAMILY.
My list of angels and superheroes could never be complete without the special place that Omar, Daniela, and Martin, as well as their mom and dad, my uncle Pedro and my aunt Pierangela had in my life. They are my cousins, but in reality they are so much more than that. Truth is, I tried to write this piece so many times, but words are not enough to express my immense gratitude to them.
My childhood and my life in general were simply made better because of them. Around them, we were just a family. We were not special, different, and didn’t need to be “accommodated.” Life was simply life. Love was simply love. And my youngest brother with disabilities was their cousin too. They saw him for who he was.
They presented a micro social experiment of what could be possible. They presented an alternative. I felt safe. I felt understood. I felt heard. And what’s more important, I felt that my little brother was a person first. When I was growing up, it was not uncommon for people to see disability first, then, perhaps, the person behind it.
At my cousins’ house this was not the case.
To Omar, Daniela, Martin, and my late uncle Pedro and late aunt Pierangela, THANK YOU.
September is Children’s book month and I’m so excited I get to review Dr. Tinita Kearney’s Lola Koala Travel Adventures! This is a skillfully designed book, that takes children through the “Ws:” WHO/WHAT/WHERE, and also helps them answer YES/NO questions. As an educator, I know how much young children can struggle to learn these skills. This is why Dr. Tinita Kearney (Dr.T), a speech pathologist by training, has focused on these language skills and has made them FUN TO LEARN. Learning and playing are one and the same when it comes to young children.
Question for the author: What inspired your story?
Dr. T: School year after school year I am met with a caseload of unique, eager-to-learn elementary-school-aged students with not-so-unique speech and language issues. And while a percentage of these students have difficulties that require intensive therapy (plus the dedicated involvement of the family and school team), a good portion requires much less involvement from me. It’s this group that I aim to help with my books–by empowering their families to build their language skills at home with consistent, fun practice and resources!
Ready to get a preview of the book? Take a look at this lovely video of Dr. T reading to her daughter:
Looking for a way to teach your toddler how to answer the most important questions (Who/What/Where/Yes and No)? Grab a copy of your book right here. Enjoy!
This post contains affiliate links. This means that at no cost to you, we may get a commission when you click a link.
Everything about baby sleep can seem frighteningly high-stakes at 3 A.M. in the morning.
Make one tiny mistake in his or her training and your child’s development will be seriously affected: he’ll either end up waking in the night well into his high school years, or worse, develop anxiety, depression, or mood swings.
And with every sleep expert offering slightly different advice on the ideal timing and method for sleep training you may be unsure about who to believe, how to proceed, or which sleep training method you should follow.
That’s where this article fits in – I’m going to help you separate sleep fact from sleep fiction by zeroing in on 6 science-backed strategies that have been proven to promote healthy sleep habits in babies and young children.
Strategy #1 – Learn to Spot Your Child’s Sleep Cues
Like the rest of us, your child has a sleep window of opportunity, a period of time when he is tired, but not too tired.
If that window closes before you have a chance to tuck your child into bed, his body will start releasing chemicals to fight the fatigue and it will be much more difficult for you to get him to go to sleep. So how can you tell if your baby is getting sleepy? It’s not as if your one-month-old can tell you what he needs. Here are some sleep cues that your baby is ready to start winding down for a nap or for bedtime:
Your baby is calmer and less active – this is the most obvious cue that your baby is tired and you need to act accordingly.
Your baby may be less tuned-in to his surroundings – his eyes may be less focused and his eyelids may be drooping.
Your baby may be quieter – if your baby tends to babble up a storm during his more social times of the day, you may notice that the chatter dwindles off as he starts to get sleepy.
Your baby may nurse more slowly – instead of sucking away vigorously, your baby will tend to nurse more slowly as he gets sleepy. In fact, if he’s sleepy enough, he may even fall asleep mid-meal.
Your baby may start yawning – if your baby does this, well, that’s a not-so-subtle sign that he’s one sleepy baby.
When your baby is very young, you should start his wind-down routine within one to two hours of the time when he first woke up.
If you miss his initial sleep cues and start to notice signs of overtiredness – for instance, fussiness, irritability, and eye-rubbing, simply note how long your baby was up this time around and then plan to initiate the wind-down routine about 20 minutes earlier the next time he wakes up. (The great thing about parenting a newborn is that you get lots of opportunities to practice picking up on those sleep cues—like about six or seven times a day!)
Learning to read your baby’s own unique sleep cues is the first step to a more rested and more content baby.
Here’s something else you need to know about babies’ sleep cues, something that can toss you a major curve ball if you’re caught off guard:
Babies tend to go through an extra-fussy period when they reach the six-week mark. The amount of crying that babies do in a day tends to increase noticeably when babies are around six weeks of age.
You aren’t doing anything wrong and there isn’t anything wrong with your baby. It’s just a temporary stage that babies go through.
If your child becomes overtired, your child is likely to behave in one or more of the following ways (results may vary, depending on his age and personality):
• Your child will get a sudden burst of energy at the very time when you think she should be running on empty.
• You’ll start seeing “wired” and hyperactive behavior, even if such behavior is totally out of character for your child at other times of the day.
• Your toddler or preschooler will become uncooperative or argumentative.
• Your child will be whiny or clingy or she’ll just generally fall apart because she simply can’t cope with the lack of sleep any longer.
You will probably find that your child has his or her own unique response to being overtired. Some children start to look pale. Some young babies start rooting around for a breast and will latch on to anything within rooting distance, including your face or your arm! When nothing seems to be wrong (he’s fed and clean), but he’s just whining about everything and wants to be held all day, he’s overtired and needs help to get to sleep.
Learning to read your baby’s own unique sleep cues is the first step to a more rested and happier baby.
Strategy #2 – Teach Your Baby to Distinguish between Night and Day
Because our circadian rhythm (our internal time clock) operates on a 24-hour and 10-minute to 24 hour and 20-minute cycle (everyone’s body clock ticks along at a slightly different rhythm) and all of our rhythms are slightly out of sync with the 24-hour clock on which the planet operates, we have to reset our internal clocks each and every day – otherwise, we’d slowly but surely stay up later and sleep in later each day until we had our cycles way out of whack.
Daylight is one of the mechanisms that regulate our biological cycles.
Being exposed to darkness at night and daylight first thing in the morning regulates the body’s production of melatonin, a hormone that keeps our bodies’ internal clock in sync to that we feel sleepy and alert at the appropriate times.
By exposing your baby to daylight shortly after he wakes up in the morning and keeping his environment brightly lit during his waking hours, you will help his circadian rhythm to cue him to feel sleepy at the right times.
Moreover, he’ll start to associate darkness with sleep time and bright light with wake-up time – you’ll find that it works best to take advantage of sunlight (as opposed to artificial light) whenever possible.
Studies have shown that exposing your baby to daylight between noon and 4:00 P.M. will increase the odds of your baby getting a good night’s sleep.
Strategy #3 – Let Your Baby Practise Falling Asleep on His Own
Some sleep experts recommend that you put your baby to bed in a sleepy-but-awake state whenever possible from the newborn stage onwards so that he can practice some self-soothing behaviors.
Others say that you should give your baby at least one opportunity to try to fall asleep on his own each day.
Lastly, some others say that there’s no point even bothering to work on these skills until your baby reaches that three-to-four month mark (when your baby’s sleep-wake rhythm begins to mature so that some sleep learning can begin to take place).
Sleep experts claim that the sleep-association clock starts ticking at around six weeks. They claim that this is the point at which your baby begins to really tune into his environment as he’s falling asleep.
So if he gets used to falling asleep in your arms while your rock him and sing to him, he will want you to rock him and sing to him when he wakes up in the middle of the night – that’s the only way he knows on how to fall asleep.
This is because he has developed a sleep association that involves you – you have become a walking, talking sleep aid.
Some parents decide that it makes sense to take a middle-of-the-road approach to sleep associations during the early weeks and months of their baby’s life – they decide to make getting sleep the priority for themselves and their babies and to take advantage of any opportunities to start helping their babies to develop healthy sleep habits.
Regardless of when you start paying attention to the types of sleep associations your baby may be developing, at some point you will want to consider whether your baby could be starting to associate any of the following habits or behaviors with the process of falling asleep:
Falling asleep during bottle-feeding
Being rocked to sleep
Having you rub or pat his back, sing a lullaby, or otherwise play an active role in helping your baby to fall asleep
Having you in the room until your baby falls asleep
Relying on a pacifier
Here’s something important to keep in mind, particularly since we tend to fall into an all-or-nothing trap when we’re dealing with the subject of sleep.
You can reduce the strength of any particular sleep association by making sure it is only present some of the time when your baby is falling asleep.
If, for example, you nurse your baby to sleep some of the time, rock your baby to sleep some of the time, and try to put your baby to bed just some of the time when he’s sleep but awake, he’ll have a hard time getting hooked on any sleep association.
Sleep experts stress that the feeding-sleep association tends to be particularly powerful, so if you can encourage your baby to fall asleep without always needing to be fed to sleep, your baby will have an easier time learning how to soothe himself to sleep when he gets a little older.
Most babies are ready to start practicing these skills around the three- to the four-month mark.
Strategy #4 – Make Daytime Sleep a Priority: Children Who Nap Sleep Better
Scientific research has shown that babies who nap during the day sleep better and longer at nighttime. While you might think that skipping babies’ daytime naps might make it easier to get them off to bed at evening, babies typically end up being so overtired that they have a very difficult time settling down at bedtime and they don’t sleep particularly well at night.
And rather than sleeping in so that they can catch up on the sleep they didn’t get the day before, they tend to start the next day too early and they have a difficult time settling down for their naps, as well.
Simply put, it is important to make your child’s daytime sleep a priority, just as you make a point of ensuring that he receives nutritious meals and snacks on a regular basis – your child needs nutritious sleep snacks during the day in addition to his main nighttime sleep meal in order to be at his very best.
In addition, babies, toddlers, and preschoolers who nap are generally in a better mood and have an improved attention span as compared to their age-mates who don’t nap.
Strategy #5 – Know When Your Baby No Longer Needs to Be Fed At Night
Your baby may continue to wake up in the night out of habit even when he’s outgrown the need for a middle-of-the-night feeding.
If your baby is going without that nighttime feeding some of the time or doesn’t seem particularly interested in nursing once he gets up in the night, it might be time to eliminate that nighttime feeding and use non-food methods to soothe him back to sleep.
Eventually, of course, you’ll want to encourage him to assume responsibility for soothing himself to sleep, but the first hurdle is to work on breaking that powerful food-sleep association.
With some children, it happens quickly. With other children, it’s a much slower process.
Once you break that association, he may stop waking as often in the night and may be ready to start working on acquiring some self-soothing skills.
Strategy #6 – Remain as Calm and Relaxed as Possible about the Sleep Issue
If you are frustrated and angry when you deal with your child in the night, your child will inevitably pick up your vibes, even if you’re trying hard to hide your feelings.
Accepting the fact that some babies take a little longer to learn the sleep ropes and feeling confident that you can solve your child’s sleep problems will make it easier to cope with the middle-of-the-night sleep interruptions.
Scientific studies have shown that parents who have realistic expectations about parenthood and who feel confident in their own abilities to handle parenting difficulties find it easier to handle sleep challenges.
“A real friend is one that walks in when the rest of the world walks out” Walter Winchell
Growing up in the late 70s or early 80s with a brother with disabilities was not easy. It is never easy: The world is just not made for people with disabilities. But back then, this subject was taboo. I still remember when I was a young kid, about 10 or 11 years old, and my parents went to see this highly renowned neurologist at a very famous institution in Buenos Aires. When they came back, my father told me that there were basically told that since they already had two “normal” children, they should concentrate on raising them, and put the third one, my little brother with disabilities, in an institution. I remember that my mother cried for days.
I started seeing the world in groups of people: 1) Those who had a passion for helping, the superheroes, like my brother’s speech teacher, Alicia, one of the sweetest people on earth, or the “new” neurologist, the one who had the task of making my mother whole again, Dr. Roveta, 2) And those who were angels on this journey, like my friend Lucy, who unbeknownst to her, became one of the most positive influences in my life. Angels were those people who not only accepted me as I was, an insecure, self-doubting big sister, who up until then, did not know what all of this meant, but also catapulted me to look forward in full acceptance, love, and compassion.
This all goes back to when I was about 12 years old, and Lucy came to visit me at home. Even though the circumstances or details of Lucy’s visit are a bit murky after so many years, this encounter which marked my life is still deep in my soul and is still a guide in my life. I had been sick for a few days and had been absent from school. To my surprise, towards the end of the week, Lucy and her mom came over to visit. Neither Lucy nor her mom had ever been to my house. She knew where I lived, but I had never invited her over. Why? Up until that moment, I kept conversations about my brother to a minimum.
Lucy knew about my middle brother, Hernan, but knew little to nothing about my youngest brother, Fernando. I know she must have wondered, how is one of her brothers going to school with her, but the other one isn’t? Up until that moment, I tried to limit those conversations that referred to my brother’s age in particular. It was hurtful enough to hear my classmates talk about their little brothers or sisters calling their names, saying words, communicating, running, talking…..All those things were a struggle for my little brother. He was a school-age little boy and he was still non-verbal.
But that day, as Lucy and her mom walked into my house, she was surprised, but not because of my brother, but because I hadn’t told her. I hadn’t confided in her. I hadn’t trusted her. And to my bigger surprise, she was not angry with me. She didn’t judge me. She was, instead, full of compassion and love. She made it clear, at her young age, right then and there, that she would never stop loving me and that she would always accept me.
That was the first time that Lucy visited my home and met my little brother, but it was not the last time. She continued to visit me and my family. She continued to show me not only the humanity in her, but the humanity in my brother. So what if he can’t talk? We can help him get what he needs. So what if he can’t run? We run for him. Lucy gave me hope.
Lucy was an angel on the journey, and still is. I would go on to meet so many more angels and superheroes over the years, who helped me fight the villains out there and the doubts within me. Do you have any superheroes or angels in your life?
If you want to share your stories of angels, superheroes, or villains on your journey, please leave us a comment!
“Imagine yourself doing what you love, and loving what you do, being happy from the inside out, experiencing your dreams wide awake, being creative, being unique, being you—changing things to the way you know they can be—living the life you always imagined. “ My husband Chet, June 14, 2019.
Just like that, a year went by! I can’t believe it has been a whole year! I remember the months and days just before my final day, how difficult they were, how I counted the minutes until I no longer had to worry, until I could finally be myself. What have I learned this year about leaving a toxic work environment, breaking free, and living the life of my dreams? Tons! Here are some of the most important aspects of being an entrepreneur that I can no longer live without. Hope it helps if you are thinking of making the jump!
I am free to create my own vision. When I was an employee, I needed to run every project and every idea by someone else, often someone who did not have my best interest at heart. So many good projects went down the drain just because someone did not find them interesting enough. Most of the time, my boss was more preoccupied with covering her own back than she was about moving the community forward. It was very frustrating to say the least. Now, I get to execute every plan and work on every idea. I get to work on my ideals! Do I want to travel around the world to promote an inclusive practice? I can do that. Do I want to talk to a radio host? I can do that. There are no restraints to how much I can contribute to this world.
I can work-from-anywhere. My work allows me to be able to work from anywhere, and I am embracing it wholeheartedly! Not only am I embracing it, I’m actually working with partners from around the world, and it has been one of the greatest experiences of my life. Do you want to have a better vision of what the world needs? Partner with someone from a different part of the world. As an employee, I had a very limited vision of what could be done around the globe. No matter how much I traveled, without collaborative enterprise the world was small. Now, the world is limitless, and I’m just getting started!
The sky is the limit. Basically, I own my time, my thoughts, and my ideas. I can do what I know is right and follow my heart without having to “run it by” anyone. I can respond to the needs of my community and use it as my guide to improve what I can offer. For better of for worse, I make my own decisions, and I control my own destiny.
I will be forever grateful to my family and friends who stood by me, listened to me, counseled me, believed in me. I’m a firm believer that when one person is successful doing what they love, we all win.
If you have any questions about making the transition from employee to entrepreneur, drop me a note.
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.
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.
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.
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.