Covered In Love

Posted on April 22, 2013 by Rachel Coleman

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.

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.

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.

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.

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.

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.

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!

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!

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.

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.

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.

Let the Singers Sing – Let the Quilters Quilt

Posted on January 2, 2012 by Rachel Coleman

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

46 Days and Counting

Posted on November 28, 2011 by Rachel Coleman

The countdown is on! We leave for Ghana on January 13, 2012.. yes, that IS Friday the 13th, so… that’s just… great.

First of all a HUGE thank you to those of you who have donated to The Signing Time Foundation (501c3)! I know you didn’t know it, but if you donated $50 or more, you will be getting a handwritten “Thank You” “receipt” from me, with a photo of us in Ghana. (Obviously that will be coming to you after the trip) and that offer still stands, just click the donate button… Warning: It feels good!

Secondly… we have yet another way for you to contribute!!! Check out our limited edition, Signing Time Foundation Ghana 2012 pewter pins! We are making a limited number of these (because that’s what “limited edition” means) so when they are gone… they are GONE! The best part is that this is a very affordable way to make a difference, each pin is $10 and that includes shipping to your U.S. address – and that means that just about $5 of each purchase goes straight to the Ghana 2012 trip. YeeHaw!

The Hopkins Pin and The Rachel Pin

There are two designs to choose from, Hopkins the Frog and THE Rachel “ILY”. Plus we’re using Paypal to make it really easy to order. Your order will ship in 4-6 weeks. To buy single pins visit www.signingtimefoundation.org (but really… why buy 1 when you can buy 2?)
Warning: Buying things for a good cause makes you a good person… be prepared! (results not guaranteed)

(Ok grownups, these are clearly not meant for young children, so… use your good judgement and good sense about things with small removable parts and sharp points <--- that was my Public Service Announcement and was probably better than saying things like: "don't be a ding-dong") And as always you can Chip-in for Africa below, and yes, I know the chip-in doesn't count the "donate" or "buy now" buttons, but we are also aiming to raise $20,000 not just $5,000. If the chip-in widget doesn't show up, just hit refresh, and it should! Hope you had a lovely Thanksgiving~ and that you enjoyed Black Friday and Cyber Monday! MWAH ~Rachel

Potty Training with Rachel and Signing Time!

Posted on November 6, 2011 by Rachel Coleman

Signing Time launched a decade ago and within months we started getting requests to make a potty training DVD. The requests for potty training help have never slowed down. I admit, I resisted it. I kept telling my sister Emilie, “That is not MY job!” and “There are a few signs I won’t be teaching… ever!” Heh heh. Well, the good news is when I resist something it usually only takes about 10 years to break through to my good senses. (That’s for you Rebecca)

On Thursday we launched Potty Time! and we did a good deed by purchasing that domain name because I won’t even say what used to be on it… (not kid friendly, enough said) so if you use WOT or something similar to keep your internet use safe, you might find that our site has a poor reputation there, your positive rating will help. You know me, just cleaning up the internet as I go!

So, yes, we now offer potty training powered by Signing Time! and it’s TOTALLY appropriate, and doesn’t confine potty training to just what happens in the bathroom. I teach your children that their bodies are amazing and that it’s important to listen to their bodies. I mean, when your body tells you that you are hungry you go get something to eat. So, when your body tells you that you need to use the potty, it’s pretty simple you stop what you are doing and go use the potty.

Pick up Potty Time at www.pottytime.com there is an introductory sale that ends tonight, SUNDAY November 6, 2011. So don’t wait!

The signs you will learn are: Grow – Love – I Love You (ILY) – Help – Amazing – Body – Eat – Drink – Sleep – Wake Up – Diaper – Potty – Wipe/Clean – Flush – Wash Hands – All Done/Finished – Water – Soap – Stop – Go – Underwear – Accident – Try – Careful – Celebrate (*there is a special feature for parents where we cover Poop and Pee and I know some of you will buy it just to see me teach that! Though the “PSA” about not using too much toilet paper is pretty classic, just because I know how many takes were needed to say it without getting the giggles.)

Don’t miss the Potty Time app for Android devices. You’ll get a kick out of it, I promise. You have no clue how many of my girl friends have already messaged me to let me know that I keep calling them to congratulate them on their toileting success. (iPod app is coming soon)

We had a lot of fun making Potty Time and I have to say that I get frustrated sometimes because I work really hard on these shows and for some reason, all you see in the end product is the very “zipped up”, Signing Time Rachel in her television box. When the editing process was over I again sat there scratching my head wondering why I did all of that crazy stuff when we were filming… the crazy, fun stuff that no one would ever see. So, I pulled rank;) and said, “I want a special feature!!” It also helps that I am married to one of the editors. Here are the outtakes and some of my “finest” moments~

My Two Cents: Cochlear Implants

Posted on September 7, 2011 by Rachel Coleman

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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!

Posted on August 24, 2011 by Rachel Coleman

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

Baby-Wearing ~ Toddler-Wearing ~ Eleven-Year-Old-Wearing

Posted on August 10, 2011 by Rachel Coleman

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When my daughter Leah was born in 1996 I knew that I would wear her. Baby wearing was new to Salt Lake City, Utah and people always stopped and stared as I passed by. Even more people stopped to look when my husband Aaron carried little Leah in the sling. We loved slinging her! I could nurse her privately in public. I could take her anywhere, keeping her close, and still having my hands free.

We didn’t own a stroller and we had no interest in getting one. Leah was comfortable living out of her “pouch” and experiencing the world closer to our eye-level rather than from the compartment-like stroller. We wore her through the streets of Boston, on a ferry to and from Martha’s Vineyard, and on the subway in New York City. She snuggled up against us in Los Angeles, at the beach, and most everywhere we went. Aaron and I marveled at how cumbersome those adventures would have been if her main mode of transportation had been a stroller.

Marthas Vineyard 1997

When Leah was fourteen months old we found out that she was deaf. In dealing with her diagnosis I felt all sorts of things, but one thing that I felt was a bit of satisfaction—satisfaction that my child had traveled that first year with the comfort of her mommy’s or daddy’s heartbeat nearby. Even if she couldn’t hear it, she was always close enough to feel it. She took in the world visually from her “perch” even though she was missing everything auditorily. She could see our smiles, feel our kisses and she had the confidence of feeling safe in our arms. We wore her that way until she was over three years old.

Our daughter Lucy was born prematurely at thirty-two weeks gestation and weighed 4 lbs 11 oz. She was born with spina bifida, and on top of that was diagnosed with cerebral palsy at nine months of age. The prospect of Lucy ever mastering walking was slim. I already knew that we could easily postpone the loading and unloading of a wheelchair simply by carrying Lucy in a sling, though I had no idea how far we would end up taking it…or her.

Lucy is now eleven years old and weighs fifty pounds. She is four feet, two inches tall and yes, we can still be seen wearing her. It’s not for the comfort or ease of it any more—quite the opposite. Carrying Lucy is a personal mission and always a personal triumph. We are an active family and I guess we just refused to live within the limitations imposed by a wheelchair. We travel. We camp. We hike. We go to the beach. Many of the places we go are out of the way, and the roads we travel are unpaved. Aaron and I knew that leaving Lucy at home wasn’t even an option that we would consider. Yet surrendering to a life where so much of the world’s natural beauty would be unavailable to us because an inconvenience like spina bifida wiped out our child’s ability to walk, seemed unfair to us all.

Aaron and I decided that we would become strong enough to carry Lucy. We would take her off-road, beyond the pavement where waterfalls and natural arches and hoodoos can be seen. We would be her legs. We take her up slot canyons, through coniferous forests and bring her almost face to face with moose. I have pointed out wildflowers and taught her their names as we‘ve hiked to lakes in Glacier National Park. She’s seen the mud pots and geysers of Yellowstone, and yes, she has seen the waterfalls too. In winter, when she was invited up the canyon for a snow day, I wore Lucy on my back as we tromped through snowdrifts that were thigh high!

Back in 1996 when I slipped little Leah into a sling and adjusted it so she was safely against me, I never imagined that I would be wearing my children for the next 15 years. I never imagined carrying a ten-year-old and having that child thank me for doing it as she takes in nature’s beauty. People still stop and stare, that hasn’t changed. Strangers and friends ask, “How long will you keep carrying her?” and I don’t have an answer. Honestly, I don’t know. I just know that I will carry her as long as I can.

Here are some photos of places we’ve carried Lucy. Each caption has the year, and since Lucy was born in the year 2000, the math needed to figure out her age is pretty easy.

Aaron Lucy and a Moose 2005

Aaron and Lucy in Moab 2008

Mammoth Hot Springs Yellowstone 2009

Uncle Toms Trail Yellowstone 2009

Goblin Valley Utah 2009

Hiking through Albion Basin 2010

Big Cottonwood Canyon 2010

How We Carry Our Eleven-Year-Old
We use a number of different packs and we are continually making modifications. Originally we carried the girls in Over The Shoulder Baby Holders. Now we have a custom Baby Hawk, we call it a Lucy Hawk, a Deuter Kid Comfort III, an Organic Ergo Baby*, and an old framed Kelty pack. Any time we see a pack that looks useful we get it especially if it’s rated for a child weighing 50 pounds or more.

*The Ergo Baby Carrier was given to us for free by the good folks at ErgoBaby. All of the other carriers listed were purchased.

Born This Way

Posted on June 7, 2011 by Rachel Coleman

When we found out that our one-year-old daughter was deaf, we made up a lot of stuff about what that meant for her and for us. It was TOTALLY made up; only, we didn’t realize it at the time. One of the things I decided was that I could no longer do music (I hope you are giggling). At the time it was a serious choice and I felt like it was a waste of time to spend hours and hours each week working at something and creating something that I believed my deaf child could not access. Sometimes, we react and jump to conclusions that have no basis in reality! Really!

When I wanted to sell my guitars, Aaron had the good sense to suggest I just store them under the bed. In 1997 I never would have believed it if someone had said that because of Leah’s deafness I would write over 100 songs and that this same child would be signing along with my music in the backseat of our car… and on stage!

Look at where we have come in the last 13 years since discovering Leah’s deafness. The truth is, I had no clue what her deafness meant for her future. I still don’t. But, I do know that life constantly surprises me and I even surprise myself at times.

This I know for sure, my children surprise me most. I really cannot watch the following clip without getting teary, because Lady Gaga’s lyrics are so apropos. Leah was born deaf, she was also born with music in her blood. She was born this way.

Here’s another one of our family’s “Unanticipated Milestones” – this is Leah Coleman’s first recital at Student Fest 2011. She’s performing Lady Gaga‘s “Born This Way.”

Unanticipated Milestones

Posted on April 19, 2011 by Rachel Coleman

Unanticipated Milestones

I’ve said it before, books like “What to Expect When You’re Expecting” were not written for me. I don’t think they covered fetal surgery in there. Their follow up, “What to Expect in the First Year” was also a total FAIL in my life. There should be a line of parenting books called, “Hang On For Dear Life!” or “When You Least Expect It… Life is Going to Come Along and LIFE You! (So Expect It)”
Okay, okay those are just working titles. The bottom line is when you have one of those kids that meet NONE of the milestones it can be… oh let’s see, where should I start? “Exhausting” is the first word that comes to mind, followed closely by “frustrating” and “disappointing.”

One of my children wasn’t talking or babbling by age 1 (because she was deaf and we hadn’t figured it out yet) and one who… sat up for the first time at age 3. Took her first steps at age 4. Can move a small game piece around the board without knocking everything over at age 10!

But hey, we get to celebrate and we do celebrate the little tiny things that other people might just miss or take for granted. Nothing is tiny around here. Every accomplishment just about brings me to tears, or at least gives me material for a new song:)

There’s this thing that happens, a sense of loss, like I’m giving up on something, for example~ Lucy’s first wheelchair. I cried! I cried and cried! It was an adorable KidKart! Really adorable and functional but, it was moving my 2 year-old from an unassuming stroller to a handicapped device. She wasn’t going to blend in any more. I felt like I was giving up on the possibility of her ever walking. (Why so personal Rachel?) I wasn’t giving up at all; she has spina bifida and cerebral palsy. Perhaps it’s just watching the future I thought I was going to have, clearly change course.

First Set of Wheels

I had a similar feeling when we found out that Leah was profoundly deaf and we realized that ASL would be best for her. It felt like we were giving up on the possibility of her ever learning to speak. So crazy! Why couldn’t it occur that we were giving her a language that she could be successful with? And why was it still about ME?

It has to be some default reaction, some programming or wiring… and the bottom-line is it most often feels like- “oh, they aren’t going to be like me?” Like I have got it so good? “Just like me” is the benchmark? Silly.

I thought I would start a new category here on my blog: “Unanticipated Milestones” I’ve heard from many of you recently dealing with those first wheelchairs and first hearing aids. Hey we just got our first accessible bathroom installed in our home and a few other cool things, that I never thought I would grow up and have, let alone need.

So, to celebrate: here is the bathroom renovation! I wanted it accessible, but not ugly or sterile looking. Aaron did the whole tear-out and moved all of the plumbing, he put it all back together again, installing a pocket door and painting. The guy is a rock star. He did not set the tile, grout, or mud and sand, he wanted to make that clear:) Also I didn’t take a good “before” picture, but imagine white laminate counter top across the entire wall, and an industrial utility sink… classy, I know.

He is NOT afraid to use that

He takes it down to the sub-flooring, has taken the toilet out… and is tearing into walls. Was I nervous… nah.

Who needs a toilet anyway?

Down to the studs? What a stud!

Wires and pipes and splinters oh my

Is that a blow torch? I had no clue we had something like that!! Does it work for crème brulee?

I was beyond impressed at this point

Photo shot through the new pocket-doorframe. You can see the new sub-flooring and all the plumbing is ready. I for one think it takes a brave man to move a toilet! (And a brave woman to let him)

Putting it back together again

Accessible sink and painted wall. The electric outlets have been moved. Aaron changed the light switch to a rocker panel, and he moved and lowered its location so that Lucy can reach.

Installed the sink to work with Lucys wheelchair height

Tile backsplash around the sink.

And the end result! TA-DA!

Lucy now has a place in our home where she can wash her hands… Oh the things we take for granted.

Bathroom Renovation Design for Lucy by Brian Clark Designs

And THEN There Were Crocodiles

Posted on March 15, 2011 by Rachel Coleman

A long time ago in a galaxy far far away… (Actually it was just a few years ago and right here in Salt lake City) …I had received a “cocktail” of yellow fever, measles, mumps, rubella, meningitis, and Hep A, as well as B! That sounds worse that it was, especially out of context. It also sounds like I should have been admitted to the Center for Disease Control, but I wasn’t. I was just leaving our country and going third world.

Yes, just a few years ago- Alex, Leah, Aaron, Derek and I (plus a few more) were in Ghana, Africa working and playing with deaf children there.

Did you know I have another blog? Yep, I kept a journal of both of my 2008 trips to Ghana. So, in your spare time 🙂 hop on over there and have a looksy and take a box of tissue with you.

Those trips to Africa still impact my life. There was a part of Ghana that inspired me to stop being such a consumer. I became painfully aware of the bags of garbage versus the bags of materials to be recycled that we took to the curb each week. We began recycling more and started buying less packaged food and more real food.

In Ghana, all of the students were so lean and strong. (hungry?) They do chores early in the morning. They walk to school. They study and play soccer. They carry buckets of water on their head’s without using their hands. If you are “soft” it is because you are wealthy. Your soft because you can afford to be fat, where most cannot. Let’s just say I was tired of looking wealthy and knew that if that wasn’t enough to motivate me, I have a daily reminder that someone else was depending on me being physically strong… Lucy. I changed my eating habits, my physical exercise habits and health habits. I began my personal “1 pound per week challenge” which is how I ultimately lost over 30 pounds that year. Sometimes when I am on my treadmill, I try to imagine what the Ghanaians would think of it. I imagine they would be baffled at the idea of people running on treadmills or lifting weights in a gym. For some reason, that makes me smile. On the days I don’t want to run, I just think of my cutie in her wheelchair and I tell myself not to take anything for granted… On those days I say to myself, “Rachel, run because you CAN!”

Before I went to Ghana I often found myself looking around and feeling that there wasn’t enough _______. (fill in the blank) Or we didn’t have enough __________. Coming home, I was no longer complaining about what we didn’t have, quite the opposite! I was suddenly embarrassed by how MUCH we had, even though nothing had changed except my perspective. We cleared out excess clothes, shoes, coats and toys from our closets and we donated them.

I still receive emails from our friend Marco and I’m proud to say that last year The Signing Time Foundation helped pay for part of his college tuition in Ghana.

Going to Ghana also pushed my adventure limits. Nothing like eating unrecognizable food,

having nowhere to wash your hands and “showering” with gray well-water.

There were giant spiders that came out at night.

A chorus of goats and chickens and taxis honking throughout the night. There were tearful braids and men with machetes.

And of course… of course there were crocodiles and a broken paddleboat.

My performance schedule for 2011 is too full to go to Ghana this year, I really do not have a ten day window available. I am working with Signs of Hope International to confirm a date for 2012. Signs of Hope is always putting together groups of volunteers to work in the schools in Ghana, you can also help from home, by donating to help pay for a deaf child’s schooling.

Overall they are a cool group doing a good thing.