Have Wheelchair – Will Travel (the WORLD!)

“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.

The Happy Grad

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.

In her wheelchair, in a taxi, in London
The River Thames by Boat (jet lag is real)
Big Red Bus – up top!
High-speed train – I’m asleep!
Traveling by Ferry to Ireland – Leah’s out cold

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.

Stay to the left! Driver on the right! Redbull to the rescue!
Pretty sure this is one-lane… oh, no. It’s two lanes.
Tulla, Clare, Ireland
The stuff of storybooks in Ireland
Unreal

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.

Have baguette, will travel

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.

The Eiffel Tower explodes with fireworks!

…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!

Cue all the tears!

Bastille Day, Paris France, July 14, 2014, Aaron Coleman’s birthday, and a great RUSH song

Who Will Sign With My Deaf Child?

 

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:

  1. ASL is a full and complete language.
  2. ASL is a visual language.
  3. 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 today we 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.

Hundreds of thousands of people around the world.

That’s who will sign with Leah Coleman.”

 

 

Honoring Leah Coleman

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.

I first refer them to my blog post “Cochlear Implants: My Two Cents

and THEN, I point them to this video, where I share how SO  MUCH can change because of “One Deaf Child.” But, before you 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.

resize

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.

You make your own fate.

Love, Mom aka The Signing Time Lady

LOVE

 

Confused About Kickstarter? Let Me Help!

Confused About Kickstarter? Let Me Help!

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.

*25 Early Bird pledges are all gone.

Have We Made A Difference For You? ~ A Letter to You, From Me

Dear Friend,
 
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?

  1. 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.
  2. If you like the idea, you can “back it” by making a pledge.
    Whether you donate $1, $10, or $10,000, every bit helps!
  3. 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!
  4. 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!)
  5. 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
  • Teach values
  • 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.

CAPTIONED HERE

 

Thank you!

 

There’s Nothing Wrong With Your Child: A Message From Leah & Lucy

I’m so excited to share my article There’s Nothing Wrong With Your Child. Really. It went live today on WhatToExpect.com in their Word of Mom section.

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)

Rachel and her husband, Aaron, reside in Salt Lake City, Utah, with their daughters Leah and Lucy, and Lucy’s Canine Companion service dog, Wilona. Rachel shares her family’s unexpected adventures (aka “life”) on her blog www.rachelcoleman.com.
Rachel is a board member for The American Society for Deaf Children. She is the President of the Signing Time Foundation whose mission is to put communication in the hands of all children of all abilities.

Covered In Love

Covered In Love: Our Experience With Canine Companions for Independence

The application has been filled out and it sits on my desk for close to a year. It is repeatedly buried by bills and then excavated as I pay the bills and file them away. It surfaces. I ignore it. Sometimes it feels like we might be biting off more than we can chew. Just, ask anyone and they’ll agree that Aaron and I already have our hands full.

Lucy has been struggling; it’s been two years of really unpleasant behavior. There is crying in school, outbursts at home, scratching, biting, swearing and resisting transitions. We’ve come to suspect that Lucy’s cerebral palsy may be the real culprit. As we meet parents of kids that have CP they share many similar stories, debilitating anxiety, uncontrollable outbursts.

So, the application sits on my desk another day, another week, and another month.

Whisper
I do a presentation in Sacramento, California. Nancy coordinates the event and takes us to lunch afterwards. Nancy’s service dog, Whisper, is by her side during the event and at lunch.

Over lunch I tell Nancy about Lucy’s fear of dogs, how every time a friend calls to invite Lucy over for the first time she asks two things,
“Mom, do they have stairs?”
“Mom, do they have a dog?”

Being in a wheelchair, if a dog jumps up on her, licks her, sniffs her, or puts their open mouth near her… she is helpless. She can’t just turn around and walk away. She can’t push a dog off. When dogs bark she flinches, she jumps.

I’m not a dog person, never have been. I secretly believe most dogs want to bite me.

But… Whisper… Whisper is just that, quiet and almost invisible! Whisper doesn’t sniff, bark, or jump. At the restaurant Whisper doesn’t give Nancy the “you’re eating and I’m not” stare. Whisper is quiet under the table and doesn’t even seem interested in dropped food. Whisper doesn’t take a potty break unless given a command. Whisper knows more than 40 commands.

Now, I’m fascinated. This seems like the perfect dog! Nancy agrees that Whisper is the perfect dog for her. They had been pre-matched through Canine Companions for Independence. I catch a glimpse, a little slice, of what having a service dog in our family might actually be like. I’m intrigued by Whisper… I actually like Whisper!

After lunch, we walk back to our car. Before leaving, I hug Nancy and say, “Thank you so much! I’m mailing in our application as soon as I get home.” Nancy encourages us to do it and she promises that we won’t regret it. I do my best to believe her.

A Team of Three
Within a few weeks of popping that application in the mail, we get a phone call from Canine Companions for Independence in Oceanside, California. They’ve reviewed our application. We’ve passed the first step of the process and they are calling to set up a phone interview!

On our phone interview we’re nervous and not quite sure how a service dog can help Lucy. We find out that since Lucy is not 18, she won’t hold the leash. This means that a service dog doesn’t free up our hands, it ties up one hand! I try to fathom pushing Lucy’s wheelchair, managing a dog AND signing to Leah. Hmmm. We find out that the dog can’t go to school with Lucy and some of her hardest times are at school. Hmmm.

The Skilled Companion team is made up of three- the dog, the recipient (Lucy) and the facilitator (myself or Aaron) and that team can be certified to go in public, on airplanes, in restaurants… anywhere really, as long as it is a team of three.

I’m still not sure what a service dog will DO for Lucy. If we are right there… and we always are, we can pick up dropped items, and we can open doors. Are we really going to ask a dog to do that? Seems superfluous. In the interview we mention Lucy’s difficulty with transitions and how even though we fought for her to attend public school, with socialization in mind, her behavior was isolating her socially.
Our interview ends. Aaron and I look at each other confused. Was that good? Was that bad?

A few weeks go by and we receive another call from Oceanside, California. Every time they call, I get emotional, confronted, excited, nervous, hopeful, my eyes fill with tears. I see the number on my phone and scream, “AAAAAHHHH!!! YOU GUYS, IT’S CCI!!!!” Everyone gathers around to see what it is they have to say. This time they say that we are invited to come for a face-to-face interview in December! We will work with dogs, learn about the next steps in the process, and share what we hope our family can gain from this new Companion.

I book the flights, car and hotel room. Our interview falls on the weekend of Leah’s 15th birthday. We make a vacation of it- and decide to squeeze in a trip to Sea World, perfect!

It’s December, we pull up to the CCI campus and my eyes fill with tears. Geez! Why am I so emotional? We unload and check in, meet the group of other hopefuls and get a tour of the campus.

The Fam

We spend part of the day in lectures. We learn the command sequence that facilitators use with the dogs and we practice the sequence and corrections on “carpet dog” not a real dog.
Then, they bring in real dogs. Aaron volunteers to go first. He loves Labradors.

Aaron at CCI

Since he goes first, I have to go second. I’m nervous, and I give the dog a correction before the dog has a chance to execute my command. I take a breath and remind myself to have realistic expectations. I get another chance and do better. I just don’t want to blow this for Lucy, if it really is an option to get a dog placed with us, with her. I praise the dog and it’s real praise, I’m SO happy that the dog actually sits when I ask it to sit.

The day ends with our face-to-face interview. In some ways it feels like we are designing our dream dog… “We would like a dog that isn’t aloof, one that will approach Lucy, since she can’t really get to the dog herself.”

It seems a tall request but I have to make it, “No barking?” We are told that is an easy request, none of the dogs bark, not even when the doorbell rings. They only bark on command. I’m baffled.

We request no excessive licking, sniffing or jumping up. This turns out to be an easy request; none of the dogs do that.

“No jumping on furniture” Done! The dogs will not get up on anything without a command telling them to do it.

I imagine the future episodes of doggy-doo tracked in the house. No, the dog won’t go to the bathroom unless you give the command, they are always on leash, so you just pick it up immediately. Really? No “landmines” tracked in from the yard?

We are now clear what the dog won’t do. But what will this dream dog do for our family? Maybe, it will be that missing piece that eases transitions? Perhaps it will become a built-in best friend? Will Lucy’s focus be on the dog rather than on her fears when we are out and about? Will people talk to Lucy about her dog, “Is that your dog?” rather than talk to me about Lucy, “Why is she in a wheelchair?” Any one of those might make a difference.

Aaron asks the final question, “Why would you place one of these amazing, highly trained animals with us? We can do all of the tasks for Lucy, I mean, we already do. We would just hate to take one of these dogs when that might mean that an adult or someone else who could really use it misses out or has to wait longer.” (We’ve already been told that the wait could be a year or longer.) The Instructor interviewing us smiles and says, “Lucy is absolutely a qualified recipient. The Skilled Companions meet a different need than a Service Dog. You aren’t taking anything away from anyone else.”

And that is it. We pack up. Say our goodbyes and watch Shamu splash around.

Lucy at Seaworld

If we pass this step we will eventually be invited to Team Training; a two-week course where we live on campus and are trained to work with the dogs. We are told that we will not be called unless there are two potential dogs pre-matched with us, that’s why the wait can be a year or more.

Summertime
“AAAAHHHHH!!!!! YOU GUYS, IT’S CCI!!!!!!” I’m in the car with Lucy and Leah, headed to Lucy’s swim lessons. I turn off the radio and everyone gets quiet. “Hello?”

“Hi, this is Becky at Canine Companions, we are calling to invite your family to Team Training for two-weeks in August.”

“Really? Really? Ok…. let me check our calendar and I will get back to you.”

Sometimes I fear what my calendar has to say. The calendar shows the first week of the two is scheduled for Camp Attitude– a week long camp created for children with disabilities, in Foster, Oregon… and the second week ends with my Signing Time concert in Boston.

Ok. Family Conference!
We sit down and discuss both options and decide we should take a vote.

“All in favor of going to Camp Attitude in Oregon?
One vote.

“All in favor of CCI in California?”
Three votes.
The votes will remain anonymous;)

I call Camp Attitude and cancel our spot. I call CCI and let them know we are coming. Lucy starts crying, “I don’t want to go! I don’t even want a dog!”

“Lucy,” I say, “it’s okay, it’s okay. I know you’re nervous. I am too. Listen, we can go and if it’s not right for us, we can choose not to have a dog. That’s part of the design. We go. We learn. We make a choice. But, remember, we’ve never had a dog pre-matched to our family. We’ve never had a dog that is trained like this. If we don’t go, we won’t ever know. If we go, we can be free to make a choice based in reality, rather than a choice based in a reaction, or an assumption and fear.”

She agrees.

We pack and drive to Oceanside, CA the first week of August.

As we pull into the parking lot of the CCI Campus, I’m overcome with emotion again! Seriously?

“This is real, you guys. This is real! We are here. We are in Team Training!!!”

We park, and Lucy informs us that she is NOT coming in. “Ok,” Aaron says, “whenever you are ready.” We’re pretty sure that at some point in the next two weeks she will choose to get out of the car. We unpack and go to our dorm room. It’s bigger than we imagined. We have a private bathroom, a bed, a hospital bed and a blow-up mattress and there’s still plenty of room for Lucy to maneuver her wheelchair. Sure enough, in a matter of minutes Lucy rolls in and our girls take off to explore.

Welcome Colemans

They discover two refrigerators in the kitchen; one filled with cans of soda. They are thrilled. Aaron and I get the full report from Lucy, “Mom, there’s Fanta and root beer and Dr. Pepper and even Cherry Coke, your favorite!”

Leah discovers a library of movies on VHS. The girls are excited to watch them all. There’s Apollo 13, Big, Forrest Gump, Castaway, and more. They start an unofficial Tom Hanks movie marathon.

Lucy and Leah come back and excitedly tell us that in the training room there are 12 dog crates with pink or blue nametags. We sneak in and read the names: Topper, Huntley, Waddie, Malvern, Wilona, Talia, Kong, Janessa, Leann, Donahue, Leon… hmmm, we discuss which names we would prefer NOT to have to call out for the next 8-plus years of our lives. (Malvern and Wilona top the list) We’ll start our training in the morning. It’s 9am-4pm daily. We’ll have Sunday off.

The following day we have lectures. We practice the command sequences. We practice with carpet dog. We learn so much about dog behavior and human behavior.

Breakfast and lunch are provided almost every day. Volunteers come in and feed the eight hopeful recipients and their families, and the whole staff.

After lunch the real dogs are brought in. CUTE! CUTE! CUTE!
Really? We are pre-matched with one of these awesome dogs? We look them up and down.

Day 1 CCI

We “ooooh and ahhhhh.” Aaron and I strategize coat colors and try to figure out what color we most prefer in shedding. (We did ask if we could get a dog that doesn’t shed… they all shed.)

We are told to try not to get attached and to try not to get our hearts set on a certain dog. The instructors bring the dogs around and we meet them. We are excited and nervous. Now, we work with the dogs. Leah keeps a secret tally, tracking the dogs that Aaron and I work with. We try to sort out which ones we might be pre-matched with.

The next day we work with more dogs, Leah keeps track. There’s one dog that I fall in love with, but I do my best not to get attached. She’s cute. She’s so white! According to Leah’s tallies we’ve worked with her most. It’s Wilona. Yes, one of the names we had originally said, would not work for us, and now it didn’t matter. She was Wilona, Willow, Willy, Wilsy and Wil. We pretend not to be super excited every time we work with her. Leah and Lucy do their best to suppress grins and giggles of joy. We try not to look disappointed when we work with another dog.

The third day of Team Training is when we are officially pre-matched with a dog. Everyone arrives to class on time. We anxiously await the announcements. They start with Lucy. “Lucy Coleman, you are pre-matched with…. WILONA!” They bring Wilona over to us and hand us the leash. I’m crying and smiling. Aaron has tears in his eyes and he roughs up Wilona’s fur. Lucy grins and buries her face in Willow’s neck. Willow licks Lucy twice and sits down by our feet. Leah has happy tears streaming down her face and signs, “I can NOT believe this is happening!” True. It is unreal.

She's ours

We learn so much. Day after day we work with Wilona. She stays in our room. The first few days I watch her with an eagle eye.
Is she going to get into the garbage? Nope.
Is she going to have an accident on the floor? Nope.
I take her out to toilet hourly, just in case. Wilona sniffs the grass, and then looks at me like, “really? I just went.”
Is she going to jump up on the beds? Nope. Not unless we say, “JUMP”.
There is no barking, even when we say “SPEAK” she looks at us warily, as if to ask “are you sure?”

Day after day, night after night, she’s a perfect angel. At some point we realize that Lucy has only had one outburst in almost two weeks. We are living in a new place. We are surrounded by new people and eight dogs… and Lucy is doing great!

Lucy and Wilona

We tell Willow to JUMP up on Lucy’s bed. Lucy falls asleep with one hand on her dog. Lucy falls fast asleep and doesn’t ask us to “snuggle”. Our daughter hasn’t fallen asleep without her nightly snuggle for 12 years. To our amazement, Lucy sleeps through the night. Our daughter has not regularly slept through the night in her whole life!

Sleepy Girls

We are in class until 4pm daily, and then we head to the beach. Aaron takes photos of sunsets… Leah, Lucy and I photo-bomb his really beautiful pictures.

Sunset Plus 3

Time flies and we are coming up on our final tests and graduation day. Every day we have quizzes on what we’ve learned. We practice with the dogs in restaurants, at the harbor, the mall and K-mart.

At The Pier

Aaron walks in our room one evening to find me snuggled up on Lucy’s bed with Willow. “Now, that is something I never thought I’d see in my entire life!” he says.

We play with Wil. We wrestle her. We play fetch. We brush her fur and brush her teeth. We clean her ears. I use a Dremel to file her nails. She never bites. I relax. “Mom” Leah says cautiously one afternoon, “you are covered in dog hair!!”
“No, Leah, I am covered in LOVE!” …And I am, I’m covered in love.

On graduation day we meet the amazing family that voluntarily raised Wilona for her first year-and-a-half. They gave her the groundwork, training and love to actually fulfill the job she was born to do. Only 20-30% of the dogs born and trained for this actually get placed as Service Dogs. We have brunch with her Puppy Raisers and they give us a book with photos of Willow’s first year and a half. When we come up on stage for graduation, they tearfully pass Wilona’s leash to Lucy. We tearfully accept. Wilona is officially Lucy Coleman’s Skilled Companion.

It’s amazing how much love, time, and dedication go into each one of the Canine Companion dogs. It’s amazing how much time, devotion and training goes into each family and recipient. Canine Companions is a not-for-profit organization, privately funded by donations. We paid for the gasoline to drive from Utah to California. We bought a few dinners. We bought a crate. Everything else, was given to us, everything else; leashes, collars, food bowls, a huge bag of dog food, toys, brushes, shampoo, toothbrush, poultry flavored toothpaste, a place to stay, meals and training… given to us. It almost seems too much.

Wilona has now been with us for eight months. The difference in our entire family is ridiculous. I never could have imagined that a dog would give us so much. I think back to those early interviews, our concerns and the question of what a dog could provide for Lucy, for us. Now I know why no one could answer that… it’s because there are no words to describe it.

They say a picture is worth a thousand words, so hopefully here’s a glimpse that communicates at least a tiny bit of the joy, peace, and love that our family found, in what seemed the most unlikely of places, our Canine Companion, Wilona Coleman.

Looks Like Love

Wanna Play?

First Day of School

At the Hospital

In the Car
Snow Day Wilona_0039

Let the Singers Sing – Let the Quilters Quilt

Last year my daughter Laura and I were at a craft boutique, “I wish I was crafty” she said as we walked up and down the aisle of beautiful, creative, crafts. “Laura, let the singers sing. Let the dancers dance, and let the crafters craft. We can’t be great at everything. That would just be unfair.” We shared a laugh because she is a dancer and a singer. I am a singer and a song-writer and I don’t think either one of us would really be willing to trade our current talents for some other ones, even for crafty ones.

But, a long time ago in a galaxy far, far away I was a stay-at-home mom with a toddler and an infant, and I was CRAFTY! I know, you can’t believe it can you? I was a scrapbooker and even before that, I was a quilter!

Fabric is a great medium and when I chose to make one of my very first quilts I went with a motto that seems to come up often in my life as I embark on brand new adventures- “Go Big or Go Home.” (sort of like when I decided to run a marathon as my first race)

My first quilt was a king-sized, tumbling block design and I didn’t know enough about sewing or quilting to actually work smarter, not harder– meaning I sewed EACH piece together (those of you who sew, know to sew in strips when you can and you are cringing on my behalf, aren’t you) Here is my very first quilt, made in 1996 when I was expecting Leah.

Don’t get too impressed. It’s still NOT finished. It’s only the top, and I am just about ready to hire someone to create a back and finish the thing for me because it is 15+ years-old now. (Any takers?)

Perhaps I bit off more than I could chew? Perhaps??? Realizing that, I moved on to smaller things… Baby quilts! I completed a whopping three baby quilts before I took my own advice and I let the Quilters quilt.

In 2008 I had an idea. When I went to Ghana, Africa the second time I purchased fabric while I was there and when I came home I made three baby quilts. These three quilts are actually finished (gasp) and are NOW available for your bidding pleasure on ebay. All funds will go to The Signing Time Foundation for our upcoming trip to Ghana, so go bid wildly. Just click on the quilt you want and you’ll go to straight the eBay auction! These auctions end on January 12th and we leave for Ghana on January 13th.

Yes, these really are handcrafted by me, Rachel Coleman. Talk about limited edition, I’ve now made six baby quilts and one giant unfinished quilt in my entire illustrious quilting career. What a career! Happy bidding~

There are only 11 days left before we take off to Africa, if quilts aren’t your thing you can still “join our party” by making a tax-deductible donation to The Signing Time Foundation. You can also chip-in here: (If you don’t see the chip-in widget, just hit refresh)

Or if you are weary of on-line donations you can always pop a check in the mail:
The Signing Time Foundation
c/o Ghana 2012
870 East 7145 South
Midvale, Utah 84047

I know that going third world is not for everyone, so how about we let the travelers travel and the givers can give.
~Rachel Coleman

My Two Cents: Cochlear Implants

I used to feel sorry for children who had cochlear implants. I did.

When I saw them it broke my heart because I really believed that their parents just didn’t understand deafness. I judged those parents. I assumed that the parents were looking for a quick fix to something that in my opinion didn’t require fixing. I said things like, “I would never do THAT to my child.” Aaron and I talked about giving Leah choices and we decided that she could choose to have an implant when she was age 18.

We think that Leah was born profoundly deaf. We didn’t discover her deafness until she was 14 months old. When her deafness was diagnosed we immediately started signing with her. It seemed the obvious choice, I mean, she was deaf. We never bought into the old wive’s tale that signing would delay our child’s speech. Many people warned us that Leah might never learn talk if we signed with her. I always laughed and said, “She’s deaf, she might never learn to talk anyway!” My concern wasn’t for my child’s ability to say words. I wanted much more than that! I wanted full connection and communication with my daughter. I wanted her to be a critical thinker.

When Leah was seven she was no longer using hearing aids, because, as she put it, “They don’t work! They don’t help me, they just make my ears itch.” She had gone without amplification for a few years and then, at age seven, my daughter asked for a cochlear implant.

Let’s just say there were a few things I had to get over… oh, like realizing that some people out there might judge me, just as I had been so judgmental of others. (Ouch! Ouch! Ouch! Don’t you hate that one?)

Leah has now been implanted for seven years, the same amount of time she had gone without hearing a thing.

I have found that one of the BIGGEST misconceptions still floating around when it comes to choices in deafness is in thinking that sign language and cochlear implants are mutually exclusive. They are not. Actually it is our family’s experience that Leah’s success with her cochlear implant was because she was already fluent in American Sign Language* when she got her implant AND because we have continued to sign with her. We never stopped signing. (*She was also already fluent in written English by that time)

When someone receives a cochlear implant there is a period of adjustment as the recipient begins to understand the sounds of the world around them. It was invaluable to us to have a full language (American Sign Language) to communicate with Leah during this new learning period. We had full and complete communication as our child experienced the sometimes scary world of sound. Yes, our ENT told us to stop signing immediately after Leah’s implant surgery, which was baffling to me. “She just had major surgery and you want us to refuse to communicate with her through recovery? Her implant won’t be turned on for weeks and you want us to stop communicating with her?” To me that sounded like a form of child abuse. We never stopped signing with Leah and we never will stop.

Leah is a very successful implant recipient, we feel that these are a few of the factors that helped her to use it so successfully.
1. Leah chose to have an implant, it wasn’t something that was done to her. She was old enough to control the settings and she was old enough to ask to be “re-mapped” when she was ready for more sound. We viewed the implant as another tool to help Leah communicate, not the only tool.

2. Leah was already bilingual when she was implanted. She understood ASL and her written English was exceptional. She was reading beyond her grade level. With the addition of her cochlear implant she could simply focus on acquiring and improving her listening skills and pronunciation, because now she could actually hear some things. She wasn’t trying to learn English with her cochlear implant, thankfully she was already fluent in it and her focus was entirely on learning what English sounded like and how to make those sounds herself.

3. We always focused on our child’s strengths. Prior to her implant, we did not do private Speech Therapy. Why? Simple. Because Leah couldn’t hear:) We didn’t need her to learn how to say words in order to connect and communicate because we all learned to sign. Speech is a skill that your child has a lifetime to acquire.
Speech is not a language. Speech is one way to deliver a language.
English is a language, American Sign Language is a language, but speech… speech is a skill.

You want your deaf child to learn their first language before the age of 3 if possible. If they can’t hear, don’t waste your time and theirs trying to get them to learn a listened to, spoken language. Since Leah couldn’t hear English we didn’t try to get her to learn it through speaking. She learned it through reading and writing.
(If your child is deaf please read #3 until it makes sense. Do not get stuck with the thought that you “just want your child to talk.” Trust me, you don’t just want that. You want so much more for them!)

4. Language doesn’t delay language. The fear of signing is ridiculous and thinking that a child will not talk because they first signed is as preposterous as saying, “don’t let your child crawl or they will never learn to walk.” Babies crawl before they walk and they sign before they talk. If your child has the ability to deliver a spoken language, they will acquire that skill whether or not you sign with them. If they happen to have a speech delay or a disability that gets in the way of speaking, then thank heavens you are signing with them and giving them a way to be understood. If your child’s speech is delayed, it is not the signing that delays speech… it is something else entirely, because communication doesn’t delay communication.

Technology frequently changes and even fails. Cochlear implants can be rejected by the recipient. The implant may fail or simply never work at all. Batteries die and parts break. Programming can accidentally get erased. Sign language will never fail, the batteries will not die, you can use it while swimming, you never have to “turn it on” or struggle to locate it in the middle of the night. Sign language can get soaking wet and it’s always at your fingertips.

Leah will always be deaf. Her first language is American Sign Language. She has learned English as a second language through reading and writing. With her cochlear implant, Leah has learned how to pronounce words and to understand English when it is spoken to her. She is a child who has it all.

If you are considering implanting your deaf child, my recommendation is this – do not put all of your eggs in one basket. Give your child EVERY opportunity to communicate. Give them many tools! Cochlear implants do not work for all children, implants are not always successful and should not be portrayed as a “cure” for deafness. Similarly, hearing aids do not work for all children, they are not always successful and should not be portrayed as a “cure” for deafness. You might want to consider that deafness doesn’t need a cure.

Leah recently saw her ENT, the same one who had asked us to stop signing with her seven years ago. He asked her this time if she would like to implant her other ear, since she only has one ear implanted. She looked at him and said, “Tell me what you think that would really do for me?” He smiled and said, “actually not much, you do so well. Leah, I think you should save your other ear for the future. There are some exciting medical advancements that you will see in your lifetime.”

My two cents: Sign language should be the first choice for a deaf child, no matter what additional options you pursue.

It’s Buddy Walk Season!

UTAH, NEW YORK, WISCONSIN, OHIO, & VIRGINIA I’m coming your way! (scroll down to register for these upcoming events)

Here it comes! I am staring down the barrel of September and October and you know what THAT means… It’s Down Syndrome Buddy Walk Season!!! Yes, it’s time to celebrate and fundraise and meet and sing and sign with the many families who love someone with Down syndrome. Around here, my kids just say “good-bye” to their Mama every weekend. I wish there were more weekends in September and October so that I could actually accommodate all of the requests I receive each year. (Note to Buddy Walk Organizers, we are ALREADY getting requests for 2012)

At each event this year I have created a “Team Signing Time!” for our fans who may not necessarily know anyone who has Down syndrome, but who would still love to participate and see a Signing Time event in their area. If you are coming to a Buddy Walk for a Signing Time performance, PLEASE register for The Walk and participate, I guarantee it will be an experience you will never get over. One Buddy Walk organizer told me that their registrations went up 20% the year they had me perform, that’s good news for everyone! So yes, you are welcome to attend and participate, plus I’ll have tattoos and stickers for Team Signing Time and we’ll take a Team Photo together.

Here are the Buddy Walks and Awareness Walks were you can find me this year:
Sept 10, 2011
UDSF – Utah Down Syndrome Foundation Buddy Walk
West Riverfront Park
South Jordan, Utah
8:30am Buddy Walk Registration
10:30am Performance by Rachel Coleman
11:30am Buddy Walk
Click HERE to join for Team Signing Time! in Utah
*Be sure to say “Hi!” to Leah and Lucy at this event!

September 24, 2011
National Down Syndrome Society Buddy Walk

Great Hill in Central Park, NYC
Registration and activities begin at 11:00am
Walk begins at 12:20pm
Click HERE to join Team Signing Time! in New York City
*Look for Aaron, Rachel, Leah, Lucy AND Laura at this event!

Fox Cities Wisconsin Down Syndrome Awareness Walk and Pre-Walk Activities
September 30, 2011

PreWalk Event (I’m speaking and sharing my family’s story… bring kleenex)
Perry Hall, UW Fox Valley, Menasha
Time: Doors Open at 6:30pm
Presentation Begin at 7:00pm

October 1, 2011
2nd Annual Fox Cities Wisconsin Down Syndrome Awareness Walk
Down Syndrome Association of Wisconsin
Riverside Park, Neenah
Click HERE to join Team Signing Time! in Fox Cities Wisconsin

October 2, 2012
Greater Toledo Down Syndrome Association Buddy Walk

12 p.m. – 4 p.m.
Rocket Hall, University of Toledo
Click HERE to join Team Signing Time! Toledo
*Toledo’s Buddy Walk site is back up! REGISTER NOW!

October 15, 2011
Down Syndrome Association of Northern Virginia Buddy Walk
Bull Run Regional Park in Centreville, VA
8:00am – 2:00pm
Click HERE to join Team Signing Time! NoVA

A few things you may not know… We have been donating products to Buddy Walks since 2003. My very first Buddy Walk appearance and performance was for the Down Syndrome Association of Northern Virginia Buddy Walk in 2006. Two weeks later I performed for the Manasota Buds in Bradenton, Florida.

Last year Signing Time partnered with The National Down Syndrome Society. We donated over $9,000 worth of Signing Time DVDs and products to Down Syndrome Buddy Walks across the country in 2010 by offering a free Signing Time Gift Set to every Buddy Walk that was officially registered with NDSS. This year, we are doing it again! Every Buddy Walk that is registered with NDSS can get one free DVD gift set (just pay shipping). The set includes Leah’s Farm, The Zoo Train, and The Great Outdoors, as well as the accompanying music CD to use in their raffles, silent auctions, or to give to a family in need of communication. It’s one per Buddy Walk, and all they pay is shipping. Have your Buddy Walk organizer visit www.signingtimefoundation.org/buddywalk by October 31st.

DVD Gift Set for each Buddy Walk

So, while you are all taping fall leaves to your front windows and carving pumpkins… I’ll be taping orange and blue electric tape around my fingers because around here THAT is the first sign of fall.

2010 NYC Team Signing Time


2010 Massachusetts Team Signing Time