I first asked this question in 1998. My 14 month-old had been diagnosed with a “severe to profound hearing loss,” and I previously had very limited interactions with individuals who were deaf.
I saw a Deaf woman come through the airport handing out pencils with a card attached. The card showed the manual alphabet. It asked for a donation if I kept the pencil and card. I wondered if that’swhat it means to be deaf? Will my child be asking strangers for handouts?
Growing up, I went to church with a family who had a deaf child. I called them and asked, “What does it mean for my child to be deaf?” The mother told me, “it is a wonderful, unexpected journey that will introduce you to new people and new experiences. You will learn a new language and learn about a different culture.” I thought, “That doesn’t sound limiting and scary. That sounds bigger than what we would have had.”
An early intervention worker came to our home. I asked her, “What does it mean for my child to be deaf?” She told me, “Statistically it means your child will graduate from high school with a third grade reading level.” I thought, “Not being able to hear has nothing to do with a child’s capacity to learn and their ability to read.” I was correct.
When I asked a Deaf adult the question, they said, “It means your child’s first language will be a visual language, like American Sign Language. Once you have a first language, you can use it to learn a second language, like English.” I was surprised that being deaf meant you could be bilingual.
Each week, parents struggling to imagine their own deaf baby’s future contact me. They ask a familiar question.
“What does it mean to be deaf?” is a “crystal ball” question. Parents are asking for a glimpse into their child’s future. They want to know that it will be ok.
I tell parents that deafness is not inherently disabling, but language deprivation is.
I tell them their deaf child has their whole life to learn how to pronounce words correctly in a multitude of languages, but there is only a limited window of time in which they need to acquire their first language.
My advice is always;Sign. Sign. Sign.
Don’t discriminate between deaf children and hearing children. All children benefit from early communication.
If a child can access visual communication – give it to them. If a child can access auditory information – give it to them. If a child can access both – give them both. Give all children all of the tools then look to see what works for the child. Let your child be your guide.
“Was Lucy born in a wheelchair?”, one of her first-grade peers had asked me, and I imagined that ultra-sound image. “Well, it looks like you are having a baby girl and… Oh! Wait… Wow, you are also having a bright green Zippy… and I am sorry to inform you it has cambered wheels!” #ouch
When your child is diagnosed with a disability, all kinds of things go through your mind. When our one-year-old, Leah, was declared profoundly deaf, I immediately imagined all of the things she/we/I would never be able to do. Leah’s now 22, and honestly, I can’t think of anything that kid hasn’t been able to do, other than hear very well.
A few years later during a “routine” ultrasound, they discovered that our next little one, Lucy, had water on her brain and a “lemon mark.” Both were likely caused by Spina bifida. (It’s not SPINAL Bifida… ok? For whatever reason it’s “Spina bifida.”)
Spina bifida: open spine, some paralysis, shunt, multiple surgeries, she’ll likely never walk, wheelchair, leg braces, Dynamic Ankle Foot Orthotics (DAFOs), bowel and bladder issues… that’s the gist of it. Now you don’t have to Google it.
I don’t recall my exact words or thoughts upon hearing this diagnosis. Probably something like “ARE YOU KIDDING ME??? ARE YOU BLEEEEEEEEPING KIDDING ME???” I do remember thinking about the things that she/we/I now would likely never be able to do, wheelchair-in-tow.
Lucy was also diagnosed with cerebral palsy when she was 9 months old, and the list of things I no longer viewed as possible continued to grow.
Lucy’s now 18 years old. She attended mainstream high school and graduated last summer with a regular diploma.
Thirteen years ago I realized that I had made a lot of wrong assumptions about what was possible for my family, our travels, and our children. I had made up all kinds of things about what our future would be like… living life with children who have disabilities. I could finally see that I had been living in a way which proved those wrong-assumptions right.
Now there was an opportunity to prove wrong my old ways of thinking!
If you you’re going to make something up… make up something awesome!
Lucy’s first trip to New York City: The plane was landing at JFK airport and Leah looked at me with concern. “Mom? How are we going to get around New York City with Lucy’s wheelchair?”
I had been struggling with that same concern for months. I answered her as honestly as I knew how, “Leah, I have no clue. We can’t be the first people to travel to New York City with a wheelchair, and we likely won’t be the last. We are going to work it out.”
Spoiler Alert: It worked out. Her wheelchair fit in the trunk of the taxis, and some taxis are fully accessible. There’s a phone number you can call to request an accessible taxi, and both Uber and Lyft now offer accessible services in many cities.
The summer of 2014 Leah booked a school trip to Europe for 14 days. We rounded up our Delta Skymiles and Marriott Hotel Reward points and plotted out meeting up with her in London, traveling throughout Ireland, and ultimately enjoying July 14th, Bastille Day, in Paris! This was sure to be a vacation we’d never get over because of the sheer AMAZINGNESS… or because it was going to be an EPIC failure.
We met Leah in London where she said good-bye to her schoolmates and teachers.
Just to test myself, I made sure we travelled by plane, train, taxi, rental car, subway, bus, and ferry.
NOTE: Subway, train, and ferry have “handicapped rates” which apply to the person with special needs and one caregiver.
TIP: If a city has hosted the Olympics, it is likely to be more wheelchair friendly.
Lucy’s manual chair allows us to “bump” her up or down the stairs if an elevator is broken. Every time we needed to go up or down a set of stairs, we had plenty of strangers willing to help.
We have not yet dared to travel with the 200-pound power wheelchair, and that’s the chair Lucy prefers. She has so much freedom, independence. and control with it. (I find it kind of creepy-comical when people refer to them as “electric chairs.” #zap)
I just can’t image arriving by plane at our destination to find there is something very wrong with her power wheels, and then attempt to lug that 200-pound monstrosity everywhere, while physically carrying Lucy throughout a trip. I’d love input on that from any power chair users who travel domestically or internationally.
Ireland was fantastic. We rented a car and drove ALL OVER! Every time we got in the car I reminded Aaron “Stay to the left! Stay to the left!” There were so many tiny streets and so many cars driving fast and the steering wheel was on the right.
After Ireland we went to Paris, France. Aaron’s birthday is July 14th. This date is also Bastille Day, which is Independence Day in France. If you are also a fan of the band RUSH… and you were born on Bastille Day, then you can maybe understand why in our 18 years together we had talked countless times about spending Bastille Day in Paris “someday.”
TIP: “Someday” doesn’t actually exist. It’s a way of putting off your dreams indefinitely. Hey, since it’s January 1, 2019 how about creating a New Year’s Resolution to actually DO one of your “somedays!”
Step 1: Open your calendar, get out your wallet, and make one of your “somedays” obsolete.
Step 2: Forever remove “someday” from your vocabulary.
Step 3: You just made 2019 a year to remember! #yourewelcome
Bastille Day, 2014 – Paris, France: We bought some wine, some meat and cheese, plus chocolate, and a few baguettes… like you do when you are in Paris! Then we found a spot with a few hundred-thousand other people, with a great view of the Eiffel Tower. We sat in the street eating, talking, and laughing as the sun set.
That could’ve been enough. I could end this happy tale right here… But then, something really amazing happened.
The sky was dark. John Lennon’s “Imagine” started to play, and tears started to fill my eyes.
Eighteen years ago we talked about this day. For eighteen years, we imagined this very moment. I cried because we did it! We actually did it! And then, I cried harder, because DAMN we just did so much more than what we ever imagined would be involved in this adventure. Back in 1996, when we first talked about spending Bastille Day in Paris, we didn’t even have a deaf child, let alone a child with a wheelchair.
That night in Paris, I looked back over our eighteen years together and I cried because I was really proud of us! Our real story was so much better than anything I could’ve imagined.
Was it too perfect? The fireworks started and in one movement the entire crowd rose to their feet.
…And that movement blocked Lucy’s entire view, but what could I do? Fireworks. Music. A celebration. So many people!
Then, I heard something.
People around us start saying what sounded like “Ah-see! Ah-see!” They were tapping each other and pointing back to Lucy saying it over and over. I watched it spread like a wave from Lucy moving toward the Eiffel Tower… Tap, tap – point to Lucy – “Assis! Assis!”
Then,everyone who had been standing in front of Lucy, sat down!
I am not making this up! They all sat back down so one little girl, who was sitting (“assis”) in a wheelchair could see the firework display at the Eiffel Tower.
In that moment, the universe delivered something for which I didn’t have the words to ask… especially in French!
The first day of preschool, Leah was fearless. I was not.
I wanted Leah to be safe.
I wanted Leah to fit in.
I wanted Leah to enjoy the journey and discover things that she’s passionate about.
Mostly, I wanted it to go well.
I was aware of how differently Leah was viewed in our neighborhood and community. As parents, we didn’t view deafness as a disability, it was a communication issue, she just “spoke” a different language. I never expected to give birth to someone who had a different native language than I, but it happens. That’s deafness.
First Day of Preschool – Leah Coleman, age 3 – 1999
Leah waited for the bus and I wondered if I was a bad parent, allowing my deaf three-year-old to ride a Los Angeles School District bus. I was able to set those fears aside knowing that her preschool experience was more important than most.
Leah was going to preschool, specifically to exist within, and experience the least restrictive language environment. While she was not aware of it as she boarded the bus, she was going to a place where her native language would be modeled for her in a way that was not anything we were able to duplicate at home.
Leah’s preschool teacher, Jodie was deaf. In Leah’s IEP we requested “full access to her native language, American Sign Language.” Once the documents were signed, I asked the team if they realized that what they had just signed would require two fluent signers in Leah’s classroom. (They had not realized that.)
I explained that having one fluent singer in the class was an incomplete language model for the deaf students. Much like the “sound” of one hand clapping. (There is no sound.) The children needed two signers to have the opportunity to “overhear” conversations. Two signers provide access to the much needed incidental language which is required to fully understand, and naturally acquire their first language, a visual language, American Sign Language.
The district employees were not happy with this news. No matter. We knew that their standard educational offering for deaf children was lacking in many ways. They promised (statistically) that Leah would graduate from their high school with a third grade reading level… So, when looking at preschools for our deaf child, we also looked at the 3rd grade classrooms and the 6th grade classrooms. We wanted to see what the future held for our child in their educational environment in the years ahead.
As a preschooler, Leah’s language was already on par with each school’s deaf third grade class of students. We knew we couldn’t put our three-year-old in a class with eight-year-olds. So began a lifetime of trying to find an appropriate educational setting, as well as appropriate peers for our deaf child.
“Why do you want ASL? No one else is demanding ASL.” That’s what the district rep asked in one of our meetings. We were “demanding” ASL because:
ASL is a full and complete language.
ASL is a visual language.
Our child is deaf.
This was clear and simple to us, but the district representatives were stumped by this logic.
We tried to help them understand, “Leah can’t hear. Because she can’t hear, it’s unlikely her first language will be a listened to, spoken language. We don’t want Leah to learn to pronounce some words in English. Having the ability to say some words isn’t the same as understanding the English Language. Saying some words is not English and it’s not language.”
Then they asked, “If Leah learns American Sign Language, who is going to sign with her?”
We didn’t have a good answer.
They were trying to say that American Sign Language would only isolate Leah.
Leah was born to hearing parents, as are 92% of deaf children. As hearing parents, we lived, socialized and operated within a hearing community.
“Who is going to sign with Leah Coleman?”
The question went unanswered. The documents were already signed.
To meet the conditions in her IEP, Leah was assigned a one-on-one aide who was deaf. Since Leah’s teacher was deaf, she had two fluent signers in the classroom! We believed that this model would not only benefit our child, but it would benefit every child in that preschool class.
2018– Leah is now age 21. My feelings that surrounded Leah’s first day of preschool and most recently, the first day of Leah’s senior year of college, are surprisingly similar.
Leah is still fearless. I am still not.
I want Leah to be safe.
I want Leah to fit in.
I want Leah to enjoy the journey and discover things that she’s passionate about.
I still want it to go well.
Leah is one of 2000 deaf students who attend the National Technical School for the Deaf (NTID) at the Rochester Institute of Technology (RIT). Leah chose this college over our local colleges specifically to exist within, and experience the least restrictive language environment while in college.
Senior Year of College – Leah Coleman, age 21 (w/CCI Hearing Dog – Robin, age 3) – 2018
The campus, dorms, and classrooms are set up for deaf students. Deaf students have access, no matter their communication method and no matter the technological tools they choose to use, or choose not to use, as the case may be. In Leah’s dorm, the doorbell makes a light flash. In Leah’s classes, interpreters, live captioning, and downloadable notes are provided. There are mental health professionals on campus who sign! <– so hard to find.
Freshman year, Leah’s cochlear implant was lost – L O S T – the insurance replacement process took months, but because Leah has access to more than one language and doesn’t have to rely on the CI, and the school provides access for deaf students who sign, speak, or cue… losing her implant caused no problem!
College has also provided something we were unable to provide our deaf child. Leah has developed a strong deaf identity. Leah’s ASL skills have reached new levels. Leah has been immersed in a community of signing and non-signing peers and has made lasting friendships and memories and experiences.
Leah is a Resident Assistant (RA) again this year and in that position, Leah helps new students feel welcome and safe at their new home away from home. Sometimes I wonder if our house now feels like Leah’s home away from home. That doesn’t even make me sad. It makes me happy. If Leah feels at home, in many different environments, to me that’s a win!
I’ve been thinking back to the days just prior to preschool. Back when we had no way of knowing where our journey would take us. All we had was a belief that with ASL we were making the best possible choice for our child. Sometimes, that’s all you’ve got, belief and hope.
But, if I could go back in time, I’d rewind to the question that I was unable to answer in 1999, “If Leah learns American Sign Language, who is going to sign with her?”
This time, I would stand up with the confidence, and the knowledge, and all of the experience I now have, and I would answer with certainty…
“Hundreds of thousands of people around the world will sign with Leah Coleman. Within just a few years… many more parents will find the courage to sign with their own deaf children because todaywe are ‘demanding’ that Leah have full access to American Sign Language.
Today doesn’t only impact Leah and nine other students in one preschool class… today we begin down a path that can alter the world.
AMERICAN SOCIETY FOR DEAF CHILDREN ANNOUNCES SIGNING TIME’S RACHEL COLEMAN AS EXECUTIVE DIRECTOR
Washington, D.C. – February 5, 2018 – The American Society for Deaf Children (ASDC), the oldest national non-profit organization providing resources to parents of deaf children, announced today that its board of directors has selected Rachel de Azevedo Coleman as the organization’s Executive Director.
“After a nationwide search we are thrilled to have Rachel as our new Executive Director,” said Board President Avonne Brooker-Rutowski. “We are confident that Rachel’s experience raising a deaf child and giving her child access to both English and American Sign Language, her history of taking action to better her daughters’ lives, and her passion for her work will bring ASDC to the next level.”
“Rachel has gained a deep understanding of the importance in empowering parents to communicate and connect with their Deaf children through American Sign Language,” continued Mrs. Brooker-Rutowski. “Together we will advance our mission by empowering families with deaf children to reach their highest potential.”
The selection of Coleman caps a six month nationwide search by the board for someone to lead with vision and direction.
“ASDC has been a resource for me since 1997 and I am honored and excited to lead its growth,” said Mrs. Coleman. “I know the challenges parents raising deaf children face. It can be a daunting task to not only raise a child, but to learn a new language, become versed in cultural nuances, and incorporate a visual language system throughout your home and your life. I have spent my entire career developing real solutions for families like mine and I am eager to apply these skills at ASDC.”
After learning that her 14 month old daughter was profoundly deaf, Coleman was told not to have high expectations for her child. Coleman refused to accept that answer and for the past 20 years has been influential in creating a world where, through sign language, children can communicate their needs and be fully understood regardless of their abilities.
Coleman is the Emmy Award nominated host, and co-creator of “Signing Time!”, the public television show and DVD series that teaches basic American Sign Language vocabulary to families in an engaging and musical way. The series has been broadcast to millions of viewers through such platforms as PBS stations, Netflix, Nick Jr., and mysigningtime.com.
“Through “Signing Time!” she brought American Sign Language to the masses, but most importantly, to the communities that surround Deaf children,” said past Board President, Dr. Beth Benedict. “Her focus in this role will be creating national outreach programs to create greater awareness of ASDC, and to give families the tools and resources they need to raise successful Deaf children.”
Coleman’s production company, Azevedo Studios, and her YouTube production company, SKYVIBE will continue to create educational and value based children’s programming such as Rachel & the Treeschoolers and FuntasticTV. The SKYVIBE network garnered 1.8 Billion views in the last 12 months.
In 2015 Coleman launched mydeafchild.org providing an innovative online American Sign Language curriculum, free of charge, to parents living within the U.S., raising deaf children ages 36 months and under. To date she has raised more than $1.5 Million dollars to produce and create content, curriculum, and additional resources for families raising deaf children.
American Society for Deaf Children (ASDC)
American Society for Deaf Children (ASDC) is the oldest national non-profit organization founded by and governed by parents of children who are deaf and hard of hearing. ASDC was founded in 1967 as a parent-helping-parent organization.
For the past 50 years ASDC has provided support, encouragement, and information to families raising children who are deaf. Offerings include American Sign Language Learning Opportunities for parents and caregivers to improve ASL proficiency and Annual Family Conferences. The 26th Annual Family Conference takes place June 21-23, 2018 in Salt Lake City, Utah and features keynote presenters Roberta “Bobbi” Cordano, President of Gallaudet University and Nyle DiMarco, winner of “Dancing with the Stars” and “America’s Next Top Model.” For more information visit deafchildren.org.
Sometimes, it feels like I am carrying the weight of the world.
Working to make a difference. Hoping to alter perspectives. Showing families that there is hope.
There IS Hope.
I’ve dealt with depression and anxiety in one form or another since I was 12. I’m 43.
When Leah was a toddler, there were days I got out of bed, just so she wouldn’t see me “setting the example” of staying in bed until 2 in the afternoon. (It didn’t save her from it.)
When the weather turns, we turn to bed. It’s one of the less awesome things I’ve passed on to my kids. We call it, “Becoming one with the mattress.”
“Hey, it’s mom. You okay? You getting out of bed before noon? I’m only asking because I’m struggling.”
Truth be told, it’s kind of nice to have a community of family members who get it. People who just check in when there’s a certain feeling in the air.
I’ve asked those around me to please not judge me when I spend a day in bed. You see, hearing, “Oh my God! You’re still in bed?” doesn’t really help. If you’ve never needed to stay in bed all day, just to get through a day, be grateful you don’t understand.
Today, a family who has a deaf child contacted me through Facebook to ask my opinion on cochlear implants and American Sign Language. This is a weekly, if not daily, occurrence and I LOVE it when parents reach out to me.
and THEN, I point them to this video, where I share how SO MUCH can change because of “One Deaf Child.” But, beforeyou click… I invite you to read on.
TODAY, December 8, 2015 is Leah Jane Coleman’s 19th Birthday.
Leah lives in Rochester, NY where she is attending her first year of college. She received two scholarships and was awarded her high school’s Sterling Scholar Award in Theater.
Yes, I am proud to be her mother, but not just for the reasons you might assume. While you’ve likely watched Leah grow up in your very own living room, and she’s very likely shared American Sign Language with you and yours… my proudest moment happened as she and I drove to her college campus for the very first time.
We arrived in Rochester after a red-eye flight from Salt Lake City, Utah where we had just wrapped the filming Signing Time Sentences hours earlier.
We are tired. We rent a car and start toward a day of sorting out dorms, roommates, classes and the like.
We turn right and for the first time we face campus, (ahem) now “home.” Leah looking at the red, brick buildings ahead of us says,
“Mom. You know how some people believe in fate? …I make my own fate.”
I love you Leah Coleman. I cannot wait to see what you choose to do with this incredible, beautiful, brilliant life that you live. You SHINE.
You have already made a profound difference in the lives of countless families. You’ve helped countless “Alex’s” communicate with their “Leah’s.” You’ve helped eliminate so much fear that the “Rachel’s” and “Aaron’s” have had as they enter this new world of deafness.
Make A Difference (You can check that one off your list…)
or you can keep doing that. It’s entirely up to you.
Kickstarter is a platform where Creators can launch new projects. Anyone, anywhere can become a Backer by making a Pledge and getting cool Rewards. You only get your Rewards if the project meets its funding goal. Your credit card is never charged if the goal is not met.
It is not a donation. It is not tax-deductible. You are not a traditional investor. If you like a project and want to help it become a reality, you Back it and Share it with others. If enough people (aka the crowd in crowd-funding) Back a Project it becomes a reality!! Everyone wins!
We have Rewards that range from $25-$10,000 (Seriously, want a Rachel, Alex & Leah concert? That’s $10,000) And you can even Pledge less than $25 and choose no Reward. You could also Pledge $100 and choose no Reward if you wanted:)
We met our Funding Goal on July 27th, but it’s not over!
There are Stretch Goals: each additional $50,000 Pledged above our initial goal will trigger the following exciting things: 1. We WILL make an additional episode! (Episode 1 is done. Episodes 2 & 3 are funded through Kickstarter. Episode 4 is 43% funded right now when it is 100% funded we will make it!) 2. We will open additional Rewards for YOUR CHILD to appear in OUR SHOWS! ($350-500 pledge) 3. We will open another Executive Producer Credit ($1000 pledge) 4. We will open another On-screen Dedication Credit ($1000 pledge) 5. Each Backer who has pledged to Rewards of $25 or more will receive EACH of these new episodes at no additional cost (delivered digitally).
YOU get to say how many shows WE make! <---how cool is that? Realistically this means we could raise $500,000 and for a $35* Pledge (or above) you could receive ALL 12 episodes of Rachel & The Treeschoolers!! Pledge and Share! Pledge and Share!
Here, I’ll walk you through how it all works on this video with my brother, Aaron.
Here at Two Little Hands, we have been told by TV executives that our newest shows are too educational for television. I don’t think our shows teach too much – I think most TV shows teach too little.
So, we’ve decided to take our new show, Rachel & The TreeSchoolers, directly to you through the crowd-funding site Kickstarter!
What is Kickstarter?
It’s a website where anyone can pitch an idea for a project. In our case, we are pitching our new show, Rachel & the TreeSchoolers.
If you like the idea, you can “back it” by making a pledge. Whether you donate $1, $10, or $10,000, every bit helps!
If you “back it,” you get a reward. You can get DVDs of Rachel & The TreeSchoolers. The more you pledge, the more exciting the rewards. At one pledge level, I’ll even write you a song!
If we reach our goal, the project gets funded and you’ll get your rewards. Our funding goal is $50,000. (If we go beyond and reach $500,000 we can complete all 12 TreeSchoolers shows!)
If we don’t reach our funding goal, we get nothing, you don’t get a reward, and you won’t be charged. It’s all or nothing.
We are committed to making shows that:
Engage children through movement, music, and language
Empower and educate children
Make a real difference
The truth is we can only continue to make shows if we know there is a demand for them. If our shows Signing Time and Baby Signing Time have made a difference for someone you love, now you can make a difference for the next generation of children by backing Rachel & The Treeschoolers on Kickstarter.
I hope this gives some peace and perspective to those of you who struggle with what to expect when you get the unexpected… like we did.
Rachel Coleman is the Emmy-nominated host and one of the creators of the children’s television show and DVD series, Signing Time! and its sister-series Baby Signing Time! Inspired by her daughter Leah’s deafness, Signing Time teaches families to communicate through American Sign Language. Rachel’s newest project, “Rachel & The Treeschoolers,” takes on the ambitious task of teaching a full preschool curriculum in 12 musical episodes and activities. (You can become a part of making Treeschoolers a reality by participating in our Kickstarter campaign)