Editor's Note: Our friends at the CARE team are conducting a study into craniofacial microsomia, which includes facial differences like microtia, hemifacial microsomia, Goldenhar syndrome, and ocular-auricular-vertebral spectrum conditions. Please take the time to read their words below about the study.
These research studies are a great way to give back to the craniofacial community! The $100 Amazon gift card you receive in return is a wonderful incentive, too.
The CARE team, comprised of an interdisciplinary group of more than 20 members from 7 countries, recently launched the CARE study (Craniofacial microsomia: Accelerating Research and Education), the main goal of the study is to understand how craniofacial microsomia (including microtia, hemifacial microsomia, Goldenhar syndrome, and oculo-auricular-vertebral spectrum) affects individuals and their families.
We are looking for adolescents and young adults as well as caregivers of children and adolescents to participate in this study. Study participation can be done online and on the phone or video call and includes a medical history interview, providing facial photos, and an open-ended life story interview. Participation will take around 2-3 hours and participants will receive a $100 gift card when completed as a thank you. Please feel free to check out our website to learn more: www.thecarestudy.org
I’m Rob Gorecki. I’m 32 now, but I was two years old going on three when the organization was founded in 1989. Children’s Craniofacial Association (CCA) has been a part of my life since before I can remember.
I was born with Goldenhar syndrome which caused a facial cleft that affected my speech and left me with just one eye and one ear. I’ve had lots of craniofacial surgeries (my mother says she lost count after a couple dozen), from the time I was an infant through high school, while I was still on my parents insurance. I have a reconstructed, though non-working, left ear. I wear a prosthetic left eye. I was three years old when I met Cher backstage at her Heart of Stone tour in early summer 1990. This “meet and greet” was arranged by my neurosurgeon who was on CCA’s Medical Advisory Board. Cher had become the organization’s Honorary Chair/Spokesperson after she portrayed the mother of a boy with a craniofacial condition in the movie, Mask.
My mother and I were among families gathered by the organization to attend a special event the following September in Washington, D.C. We addressed a Congressional hearing focused on insurance coverage needs and toured Washington D.C. together. The event featured a fundraising dinner and auction with Cher, who also went with us to the White House. We kids were invited to spend private time with Cher later in her hotel room and the moms joined those of us too little to be alone. The parents shared with Cher how wonderful it was to be able to relax among the other families while touring the city, exposing our facial differences to the usual staring and whispers of passersby. None of us were even conscious of any of it while in the group of about ten families; we were insulated because we were together.
It was Cher who suggested we gather again for some sort of camp or retreat in order to feel that supportive strength at least once a year. Yes, Char Smith was there too, and she only needed to hear that once. The very first retreat was the following June in Orlando, Florida and I am still friends with most of those families we first met in Washington D.C. Some of us also appeared on the Maury Povich Show with Cher the following year and still participate in CCA activities, especially the Retreat. The Annual Retreat is really like a big family reunion.
I’ve also liked motorcycles for as long as I can remember – maybe because I live in the Milwaukee area, home of the Harley. Every year, the Retreat weekend became our family vacation. During these vacations, I would get to visit the local Harley-Davidson dealership in the different retreat destinations, in order to add to my pin and patch collection for my “biker” vest.
Because my “biker” aspirations were well-known, in 2000, when CCA started a motorcycle raffle, I became the charity representative, the “poster boy,” for the event. In just five years we traveled to Sturgis, South Dakota for the raffle during my teens, I met a lot of famous people and made a lot of friends in the motorcycle industry. I even learned to ride a motorcycle and was gifted my first bike out there. Those connections I made through the organization inspired me to travel across the country to attend MMI (Motorcycle Mechanics Institute) in Phoenix, Arizona after high school graduation.
I also attended Cher Conventions every other year from 2000-2008 with another longtime friend, Scott Guzzo, and we met many Cher fans who were raising funds to benefit Children’s Craniofacial Association in her honor. I was happy to represent CCA there and at many other fundraising events throughout the years.
The Cher fans still know and support me as friends today, almost 20 years later.
I think having CCA’s support while I was growing up made a big difference in my life. I’ve only missed one Retreat, I met other kids like me, and my entire family found comfort in knowing we aren’t the only ones dealing with some of the common problems we share living with facial differences.
Knowing I had that “extended family” from CCA through the years bolstered my resolve to just be myself and to go out and live my life. I’ve traveled all over, twice to Europe, once by myself, with confidence that I can do anything any other average person does. I am not afraid to go out into the world, and I hope I inspire younger kids facing similar challenges to do the same.
Y -Years go by quick but our CCA family is never far!
O - Oodles of fun and allows hank to be my emotional glue
U - Understanding, Acceptance & #BeYou!
- The Merrills
Hank Merrill is a six-year old, Australian Labradoodle born in Sanford, North Carolina. A few years ago, Hank flew on an airplane to join the Merrill clan in Tinton Falls, New Jersey. Mom, Nancy, and Dad, Gary, surprised Emily with the dog to help her “keep calm and assist her with walking.” Emily’s sister, Abigail, was excited for the new addition to the Merrill household, too.
Nancy says, “Hank’s purpose is to bring peace, serenity, and love.” Emily says, “Hank is my world and he has made me more independent.” When Emily and Hank go out together, she says, “People focus on Hank, not me.” He goes to every appointment at Children’s Hospital of Philadelphia (CHOP) where Emily is treated for Goldenhar syndrome and a genetic heart condition called Tetralogy of Fallot. CHOP’s surgical team allows service animals to lie in bed with patients as they drift off to sleep before surgery. Then, Emily and Hank are reunited in the recovery room after it is all over.
Hank is with Emily at each physical, occupational, and speech therapy session, too. Hank loves to train, perform tricks, chase tennis balls, pose for pictures on Instagram where he @servicedoghank and @em.the.warrior have a large and loyal following. Hank hates water and being groomed. He is also not a big eater, but Emily helps him with that too.
Everyone in town knows Hank. He is a bit of rock star in his own right! Perhaps, Nancy puts it best, “He allows Emily to be accepted better in an unaccepting world.”
Please help Baylor University College of Medicine and Texas Children's Hospital with their study on the genetic origins of Goldenhar syndrome. Richard Alan Lewis, M.D., M.S. needs your help to keep this study alive. Blood samples and a medical history are required of you. Here is more information about what Dr. Lewis hopes to gain through this research.
"In the past two years, we atBaylor College of Medicine and Texas Children's Hospitalhave begun a genetic research program to look for the genetic cause(s) of Goldenhar Syndrome (also variously called Hemifacial Microsomia and Facio-Auriculo-Vertebral Spectrum). You may be aware that very little is known about the genetic explanation for these rare disorders, despite their variable effects on the eye, the ear, the face, the limbs and skeleton, and occasionally the kidney, among others. Also, these conditions vary widely from one family to another, so we expect that there is more than one genetic explanation for the same "diagnosis”, thus making the task of unraveling the true explanation(s) in any one family considerably more challenging! Many families have already had conventional genetic testing, which usually yields almost no useful information.
As part of The Center for Mendelian Genomics at Baylor College of Medicine, I am pursuing the genetic explanation(s) for the Goldenhar Syndrome and related conditions. Since you as parents have an essential role in caring for, monitoring, and guiding the education of these children and young adults, I would appreciate most sincerely your joining us in this effort. Without your dedication and willingness, we cannot achieve the understanding that both the families and many scientists and physicians have wondered about for decades! There is no cost to any family for the detailed genetic analyses that will be done. If you are interested in helping your child and in joining this research program, please contact me. Please call my academic office at (713) 798-3030 or email me at [email protected]. If I am not in the office, please leave a voice mail with your name and a phone number for me to return your call. Also, please mention Goldenhar Syndrome or Hemifacial Microsomia in the message. I will call back and explain the details!
Thank you! Our team here is most eager to proceed with this unique and exceptionally important research program!"
By Frederick Seitz In 1992 just hours after I came into this world, the doctors left my parents with the same message every time they gave them an update on my progress. There was very little chance I would make it through to the next morning. The doctors questioned the quality of life I would have if I survived. Little did they know a lifetime journey had already begun.
Ever since I was a kid, I knew I was different from everyone else. I have had my share of experiencing bullying and teasing during grade school many years ago. Along with that, people would stare at me in public and schoolchildren would either run away from me on playgrounds or just stare, not knowing how to react to someone their own age who looked uniquely different. It took a while to get used to as a kid and I developed a strong mind before most of my peers because I knew that when I got older, my parents wouldn’t be everywhere with me. I have also experienced discrimination within the education system especially in grade school. I was finally placed into my hometown district after 4th grade and everything changed past that point.
Around the time I went into my teenage years, I learned to simply not care what people thought of me and I focused on overcoming great adversity. Some of that included the surgeries throughout my life, some intense and some modest, and dealing with people who got in my way of building my own path to success. Luckily, there were good people along my journey who helped me in ways I couldn’t possibly repay them. They’re the reason where I am today.
From that point when I was placed into my home district, my academic success accelerated rapidly well into high school and college. I built many friendships and significant connections. My life transformed because I took control of my own destiny when I was only 10 years old. It wasn’t clear at first but looking back, I know why I did not leave this world. I am living on borrowed time for a purpose. I don’t know what your spiritual belief is but I know it is God’s will for me to be the master of my own journey, my own destiny. Life is a road and the destination is only up to whose road it is. I do not believe there is such a thing as fate. You cannot control what obstacles you will face but you can prepare if you can see them soon enough. It is your steering wheel. No matter how impossible it seems, there is always a detour. Absolutely no one except yourself can stop you. There is always a way so go find it. A perfect example to resonate this idea is this quotation from one of my role models, Steve Jobs:
“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”
That really sums it all up.
Living with Goldenhar Syndrome does make me rare because it is a rare condition but the force of determination my soul contains is more unique and unprecedented. That is what set me apart from the others. My body is a physical vessel that’s just different from most people. I am still here and looking forward to what’s coming next on the road.
A hearing device improves the life and ability for a child living with Goldenhar Syndrome to communicate with others. Read more about this inspiring story about the beauty of hearing and speaking.
Charlene Beswick's life changed forever the day she gave birth to two twin boys, one with a facial difference called Goldenhar Syndrome. Here is a passage from her book Our Altered Life. By Charlene Beswick Why I decided to share my journey
I didn’t cope particularly well with the news that Harry had been born with Goldenhar Syndrome. I wasn’t expecting it and I had no idea whether I was up to the job of being a special needs mother. You would never have known this to look at me though. Since I was a child I have been the joker, the entertainer and the one who has tried to make light of a situation and see the humour. So, I painted a smile on my face and tried to live up to the idea that everyone else had of me as a strong, positive, woman.
It wasn’t until 6 years later by which time my marriage had disintegrated, our family home was being sold and I was feeling the effects of sleep deprivation with an autistic son who thinks that sleep is overrated that everything caught up with me. My mum took me to the doctors and I was prescribed anti-depressants to save me from myself.
Looking back to the start of the journey, I wish I could have spoken with someone who didn’t feel the need to pretend that everything would be fine when they didn’t know that for sure. I wanted someone to tell me the cold hard facts of a life less ordinary. I needed to have a pity party and grieve for the life I had lost as well as planning for the new future ahead.
My book is that ‘conversation.' It’s the book I would have wanted to read at the beginning. My truth about how I struggled and learned to forgive myself for something that was never my fault. An account of how the baby I felt I had let down made me the best mum I could ever be. A transformation from weary to warrior mother and hopefully, some hope for other parents who have ever felt as lost as I did at the start and need some reassurance that the life you never expected can still be an incredible one.
The book Our Altered Life will be available through Amazon on September 29, 2017.
For now, read where it all began at Charlene Beswick's blog, http://www.ouralteredlife.com
Hi there! My name is Rasheera,
I am 26 years old and I have Goldenhar Syndrome. I currently live in Atlanta, Georgia. I grew up in the suburbs outside San Francisco with my Mom, Michelle, and two older siblings Rachelle and Rashaun. I am the baby of the
family.
During the past
year, I have had to deal with unforeseen medical problems. What started out as a toothache ended up being a six month medical journey.I found myself at the end of this journey laying on the operation table getting five of my teeth removed.It was a pretty intense experience. Nevertheless, over the course of this medical scare
I learned two very important life lessons.
First, I learned that no matter what, no matter how sick you are family is EVERYTHING! It was hard to ask for help because I am an independent, single person. When I got sick I had to rely on my
family to help. The pain from my mouth was so crippling I
was forced to take time off from work and seek medical treatment. Ultimately, I had to leave behind
my job, my friends, and my daily routine to move back to California to live with my mom. In California, I was able to get the care I needed for my teeth and jaw. This was not an easy process, but it was most definitely
necessary. I knew if I wanted to get better that I would have to sacrifice my
own independence for better medical care.
My family
stepped in during one of the most vulnerable moments of my life. I would expect nothing less than them. The sacrifices they made on my behalf
showed just how important having a support system is. I really appreciate everything they did for me. My mom and
sister trekked back and forth from doctors' offices and appointments when I
was too weak to drive. I was very grateful.
Although I dearly missed my close friends in Georgia, I relished the
time spent at home with family. In the midst of my medical crisis, our family grew closer. Often, we took my visits home for granted. This year we were all grateful to be around one another even if it was not under
the best circumstances. I truly love my family. I am so grateful for their
continued support.
The second lesson I learned was on inner strength. The time that I spent at home was
very uncertain. I was not quite sure on what to expect from day to day. Up until this year, I was relatively healthy.My last surgery was
nine years ago. After I started college, I did my best to live a normal life. I tried to put sickness and Goldenhar syndrome behind me. Nevertheless, I learned that
that was not possible because my syndrome would always be a part of my life.
When I found out my teeth
were falling apart and my jaw bone had weakened, I felt like a failure.I somehow blamed the fracturing of my teeth
on myself rather than my condition. However, I quickly came to realize that
there were some parts of my syndrome that I would not be able to control. The only thing I could do was accepted what was happening to my body and do my best to move on. Through acceptance I found my inner strength. I embraced my syndrome in new way: no longer would I be ashamed of being born with Goldenhar Syndrome. Instead, my facial difference was something to accept and proudly show the world.
Even though I am better now and no longer in pain or dealing with an infection, this process was not easy, but it was worth it because I learned these two vital life lessons. There is a big difference between living with a craniofacial condition as a child versus as an adult. There is far more to process and handle, like uncertainty, insurance, booking medical appointments, and other stuff that my mom used to handle. There is also so much more to learn as an adult because so much more of the world is revealed to us. I
would not change anything about this year. I am stronger now, healthier, display more compassion, and have even greater self awareness and self-assurance of my place in
the craniofacial community.I know that
in everything I go through in my personal and medical life that my
family will always be by my side. Finally, I know I can always rely on my inner strength, self acceptance, and the strength of my faith in God, to make it through.
Editor's Note: Follow Rasheera's journey on her website, Beauty With A Twist, where she writes about Goldenhar Syndrome, living a spiritual life, and more!
Charlene Beswick's life changed forever the day she gave birth to two twin boys, one with a facial difference called Goldenhar Syndrome. Here is a passage from her book Our Altered Life.
“Oh, I don’t mind what sex it is as long as it’s
healthy.”
I have heard it a thousand times. I even
said it myself when I was pregnant. We knew that I was cooking two little
people, but not whether we were having boys or girls. In a world where
everything is instant these days from your coffee to your car insurance, we
wanted to wait until the babies arrived until we found out their gender.
Patience is not one of my virtues so this was tough for me but I wanted to
experience the elation of hearing “It’s a boy!” or “It’s a girl!” and keep
everyone waiting for the news just as I had done 16 years earlier waiting to
find out if I had a baby brother or sister! The anticipation was so exciting.
I never, not for a moment, expected
anything other than two perfectly healthy babies. I had looked after myself
brilliantly and not given in to too many weird and wonderful cravings. I knew
that my babies would be the best babies in the world and I loved them even
before they arrived.
Of course, everything changed when they did
arrive. Eight weeks early, weighing just 3lbs 9oz (1.6 kg) each. They were
tiny. And Harry had half a face. No eye, eye socket, ear, nostril, and a
short jaw on the left-hand side. A diagnosis of Goldenhar Syndrome plunged me
into a world of language and options I couldn’t comprehend. I had said I didn’t mind whether they were
boys or girls as long as they were healthy. Now I was being faced with a
reality I had never imagined. A life I had not planned for. A future I couldn’t
predict. A world I didn’t want to be a part of.
There isn’t a word to describe how I felt.
Maybe the analogy of being stuck at the bottom of a long well explains it
better. Feeling like the only person in the world with your thoughts echoing
and bouncing off walls you have no way of climbing. Waiting for someone to come
and rescue you from this moment. Feeling helpless, desperate, and beyond sad.
Of course, it didn’t last and Our Altered Life chronicles the journey
with my boys who I naively believed wouldn’t be the ‘best babies in the world’
when we heard the news, only to discover in fact that they would become the
best boys in the universe (at least, in my universe!) It’s my honest account of
how a life I would have never chosen became a life I would never change.
The book Our Altered Life will be available through Amazon on September 29, 2017.
For now, read where it all began at Charlene Beswick's blog, http://www.ouralteredlife.com
Our dear friend, Peter Dankelson made news with his ground-breaking jaw surgery. Spectrum Health published a great article about Mr. Dankelson, his journey, and his family. I'm sure many of you have seen this article circulating around the social media sphere when it dropped last week, but I encourage you to take a look again or pass it on to a friend that might be interested.
By Rasheera Dopson Rasheera was born with three very rare syndromes. VATERS Syndrome, Hemifacial-microsomnia Syndrome, and Golden Har Syndrome. These syndromes caused her to be born with several facial and bodily deformities—resulting in 101 surgeries in my life. Rasheera Dopson lives in Atlanta, GA. Her mission is to empower young men and women in the areas of self-esteem and confidence. In her spare time she enjoys blogging, watching 90s sitcoms, and volunteering in her local community. Please check out her contributions to The Mighty for more of thoughtful reflections.
When people asked me the infamous question “what happened to
your ear,” my mom would always tell told me to tell them. “I was just born like
this way”— a phrase that followed me throughout my school-age years. I hated that question. Even more, I hated my
response because, most of the time it didn’t work. Nothing really worked when
it came to people questioning me about my facial difference. I always wanted to
avoid these situations, but they just kept happening.
When I was younger, I’d constantly
get the stares, the whispers, the glances and glares from other children. Some
kids would even be so bold to ask to touch my ear. Of course, I would jerk away,
and say a stern “NO!”As always, I would handle the constant questioning by
nonchalantly nudging it off, and saying my familiar response, “I was just born
like that.” At other times, when it would really hurt, I would go home and cry
in my Mom’s arms. It was hard being different as a child and having to deal
with other people’s reactions to your face because you are not taught to how to
deal with being teased about something out of your control.
People
tend to think that once you’re an adult the teasing and bullying stops. I wish
that were the case but it’s not true. Although, young kids are more open about
their teasing—you know how kids are, the laughing and pointing of fingers. Adults, on the other hand, are much more coy.They won’t outwardly ask a question, but you
can tell that their minds are turning. Wanting to ask the question “what happened”
but never getting the courage to say something because they don’t want to be
offensive. Adults may never ask out loud, but they do silently judge.
I’m not sure which version of these
judgments is worse, the silent judgement, or the open jokes and questions. I
once had a friend in college tell me that one of my classmates referred to me
as “crooked face” whenever I left the room.That hurt. It hurt to know that people were calling me names behind my
back and it hurt to know my so called friend didn’t correct him. It hurt to
know that people had such a limited perception of me because of the way I
looked. And for a long time I embodied those words. I let the words, the
stares, the judgements, the teasing of other people break me down that I began
to harshly judge myself. Saying silently that I wasn’t smart enough, pretty
enough, normal looking enough.
Thankfully, I came to a point where
I got tired of feeling sad every time someone stared, called me a name, or
judged me too quickly. I made the choice to take responsibility for my
difference. I couldn’t sit and sulk around every time someone would ask a
question about my ear or tease me.This was
going to happen regardless, and I couldn’t let their ignorance stop me from
living my life. What I could do was control my reaction to the judgements and set
mental and emotional boundaries. For example, in work settings in order to
alleviate assumptions I put myself out there and I make it known to my fellow
employee’s and boss that hey I’m a little different and I do have some
limitations but this is what I can do and this is what I cannot do.In social settings I surround myself with
people who know me and are comfortable with me. One of the worse things that
can happen is when you have a person around you who is uncomfortable with your
difference.When I’m out and hanging
with friends and family I don’t have to answer questions about my face or ear.
My friends and family around me know me and they don’t make concession for me
or make me feel like I’m different.
I’ve realized in my life that there will be
people who will understand and embrace your difference, and then there will be
those people who will never get it. However, I don’t get bent out of shape for
those people who will never accept or embrace me. I’ve learned that they are
not worth having in my life. I’ve learned a very important lesson in life and
that is you have to surround yourself with people who see your value as a
person, and not just a face.
Hi my name is Rasheera I have a craniofacial condition and this is my story! I was born with three very rare syndromes. VATERS Syndrome, Hemifacial-microsomnia Syndrome, and Golden Har Syndrome. These syndromes caused me to be born with several facial and bodily deformities—resulting in 101 surgeries in my life. Growing up and having
such a rare condition I didn’t see much of anyone who looked like me. My
difference was so obvious and made me feel self-conscious most of the time,
which was hard because I constantly felt like I didn’t fit in. I always compared myself to other girls I
would see in school, magazines, and TV shows and because my beauty didn’t look
like theirs I felt ashamed. Instead of
embracing my difference, I did everything in my power to hide it. In my mind I
just wanted to be normal.
Nevertheless, I came to a point in my life where I grew
tired of rejecting and hiding my differences. I was sick of trying to fit into
the norm, when I knew I wasn’t ever going to be normal. I knew that deep down
inside, even though I didn’t have a face like everyone else, there was
something beautiful about me. I just needed to figure out a way to find it; that’s
exactly what I did. I began to change the outlook that I had of myself. I no
longer saw myself as the girl with no ear, the one with a crooked face, but a
girl with something unique. In making the conscious decision in accepting who I
am, I began to find purpose in my difference. Instead of dismissing my difference,
I began to embrace it. I began to refer to myself as a Beauty with a Twist. I came to the realization that although my
face isn’t typical, it is beautiful and my beauty is worth sharing with the
world.
So now I call myself an advocate for all the other Beauties with a Twist—fightingagainst low self-esteem in young women,
especially those who are different. Knowing well the battle within between low self-esteem
and confidence, I strive to encourage every girl near and far that it’s okay to
be you. It’s okay to embrace your difference.
The day I decided to accept my beauty was the day I let my
beauty, my difference, change the world!
We're so excited to have another athlete - Nicole Abalde - who's dedicated her run to CCA.
You'll remember that Amy Stone dedicated her Triathlon to CCA this summer and now we have a runner from California racking up miles for CCA Smiles!
Nicole, an adult with Goldenhar Syndrome, found out about CCA through the recent interview with Breanna Mendoza, who we invited to our Annual Family Retreat after she endured harsh bullying at her California school. We're so excited that Breanna's story inspired Nicole and now she's helping more kids attend retreat ... Together, we're widening the circle of acceptance and making the world a kinder place.
Check out Nicole's EverydayHero page and an exclusive interview with her below.
CCA: What's your name and where are you from? NA: I'm Nicole Abalde from Pacifica, CA.
CCA: When did you start running? NA: This will be my first time training for a 12k or any "k" actually! Due to my recent weight gain, I’ve been trying to adapt a more healthy lifestyle and running/jogging is a simple way to integrate cardio into my life. CCA: Running is great! And you can definitely take it at your own pace.
CCA: What’s your favorite part about running/racing? NA: Being outside in the fresh air! Since this is my first time being part of a run with other people, I’m definitely looking forward to seeing all the crazy costumes. I’m also excited to see how long it will take me to finish the run! CCA:That means, you'll have to send us a photo of your crazy costume, right?
CCA: What do you tell yourself when you want to quit? NA: If you hate starting over, stop giving up.
CCA: Where did you see Breanna’s story and what was it that moved you the most? NA: I saw Breanna’s story on huffpost.com and what moved me the most was the initiative of the Children’s Craniofacial Assocation to invite her to a retreat where she could meet other children with Goldenhar. When I was younger I always thought I was the only one with Goldenhar and it was pretty lonely! I’m glad that the CCA exists now for children who are probably going through the same things I went through at school and at home. CCA: And we're glad adults like you are moved to give back to kids and families just starting this journey.
CCA: What was your experience growing up? NA: I was painfully shy as a child in school and even with family. I remember going to many doctor’s appointments after school with my mom and step-dad and being seen by a group of interns every time! I’ve had about five reconstructive surgeries (my last one was in 2010). Post-op was always difficult but I’ve always had my family around to support me. I was never bullied but I’ve had my share of snarky comments from other kids. Most of the time, most kids were just curious and would ask me questions.
CCA: What’s your motto? NA: Begin with the end in mind. CCA: Do you have any other hobbies or activities you really enjoy? NA: I enjoy streetlife photography.
CCA: What’s your advice to others who want to make the world a kinder place? NA: Never assume anything! Everyone is struggling with their own battle and never compare hardships and tribulations as if it were a contest to see who has the greatest struggle.
Our Journey to ASL - American Sign Language
by Rose Seitz
My son, Freddie, was born in 1992, three months premature, diagnosed
with Goldenhar’s and a multitude of health issues.The first year was a challenge but was also
filled with much joy, watching him grow, smile, laugh and enjoy life.He had a trach and was not able to vocalize
very well so we started teaching him sign language at 6 months.He caught on quickly and was soon signing in
sentences.At that time our sign
language education consisted of my frequent trips to the library gathering all
of the books I could find on the subject.No Internet for me, it was 1992.
At that time he was hearing but at the age of one we noticed that his
hearing started to diminish.All of the
hearing was gone by the time he was three. Over those three years we had been
bringing him to speech therapy at our local hearing and speech center.The therapist was teaching us signs as he was
learning them.I labeled EVERYTHING in
our house with sticky notes. Shoes had sticky notes: “SHOES,” and we would show
him the sticky note, the shoes and sign shoes. You name it, it had a sticky
note.When he was three we enrolled him
in pre-school.At that time we all knew
sign language for 3-year-olds but now it was time to learn some syntax so our
entire family -- grandmas, grandpas, aunts, uncles, cousins, friends and even his
pre-school teacher and her husband -- enrolled in a sign language course at
the local hearing and speech center.
This was a new chapter for us, as we started signing in more
“English” structured sentences.You
should know there are a couple of different schools of thought out there
regarding teaching a deaf child sign language.Some believe that a deaf child should be taught ASL, which is a separate
language from English.It has its own
syntax. It is not English syntax.Some
believe that a deaf child will learn better if they learn ASL first while others believe
in teaching the child SEE, Signing Exact English.Every spoken word is signed in the same
order.It was back to the library for
me.I read every book, pro and con, I
could get my hands on so I could decide what would be best for my son.Ultimately, we decided we would sign SEE
until he reached a point in his teen years where he could transition into
ASL.I believe we made the right
decision for him.
He started reading at
age 4. The first book was Joshua James likes Trucks.We read the heck out of that book.
We used SEE primarily until the 5th grade.From Kindergarten thru 4th grade, Freddie attended a mainstream school that had a hearing impaired unit.We had decided to send him there instead of
our home school district as they had teachers who could teach a deaf child to
read and write.The problem with that was
they treated deaf students just like they were “impaired.”Thru MANY struggles in that school district
we finally transitioned him into our home school district in 5th
grade.I’d like to take credit for the
move but it was really Freddie who wanted it.He wanted to attend the same school district his brother went to and he
wanted to be treated like everyone else, who could blame him?
That year an angel, in the form of Miss Irene, entered our
lives.Miss Irene is a deaf woman with a Masters of
Education in Deaf Education.She had
just retired from a local school district but not for long.She became Freddie’s tutor and mentor and
continues to be a mentor to him today... to all of us really.She taught him about Deaf culture and
ASL.This began our transition into
ASL.He started using it more and more
until I started to notice that he used it primarily in High School with his
interpreter and Miss Irene.The funny
thing is he would still sign SEE to me and even when I would ask him to sign
in ASL to me, he would refuse.
As Fred went off to College in Rochester, NY -- 5 hours away -- I noticed that his ASL signing was getting out of hand! I couldn’t understand
him when he was talking to his friends at RIT!I wouldn’t have that so I enrolled at the local hearing and speech
center again, this time to learn ASL.He
has far surpassed my signing skills and truth be told, my finger reading is
BAD.I can fingerspell but when it comes
to reading it, I have decided that part of my brain simply doesn’t work!
Freddie has arrived to ASL but my journey continues.I continue to learn ASL whenever I speak to a
deaf person.There are always signs I do
not know and have to ask what they mean, but I think that is the nature of language.There have been a few times
that I knew a sign that Freddie didn’t know... boy, did that make him mad!So I will continue my journey and every once
in a while I get a little nugget, that sign he doesn’t know, just so I can remind
him that I can still teach him a few things.
Photo by Larry Mohn
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Many CCA Kids use sign language and methods other than speech to communicate. If you're interested in learning sign language, most libraries across the country offer free video and online programs. Plus, the internet has dozens of great resources, including videos, self-study schedules, and quizzes for you.
Got 20 minutes? Why not start learning your first 100 signs:
