Born This Way

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

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

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.

You TOTALLY Want My Christmas Card

Remember last year how I told you all of the reasons you do NOT want our Christmas card and why it would be just wrong to send one out anyway???
(Seriously, I just went back and read that post and laughed/cried hard)

Well, this year you TOTALLY want my Christmas card!!

WOOO HOOO!!  Yes, you can get on the Coleman list and get a Christmas card from us!

Well, 200 of you (in the U.S.) can get one… the rest will just have to settle for receiving it via email which is in total violation of my personal Christmas Card policy, but oh well.

REALLY TRULY I have Christmas cards this year and not only am I going to get them in the mail… (wait for it)…

I am putting them in the mail BEFORE Christmas.  I promise! (Yikes! I just promised!)

Come on, this is BIG!  My last official Christmas card went out in 1996 the year Leah was born. That’s FOURTEEN YEARS ago! You see certain comets more frequently than you see a holiday card from us.

Check it out!

Ya know, I think I can handle this whole Christmas card thing, I’ve set my own standard. I’ll just send out Christmas cards every 14 years. I can handle that.

Happy Holidays!!
~Rachel

P.S. Mom, you really ought to put your name and address in here so you get a Christmas card from me. I know, I’m lame. But, I’m okay with it.
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It turns out The Coleman Christmas Card List was THE list to get on this year. We blew through 200 entries before I got Lucy on the bus this morning. I’m sitting here at the kitchen table licking envelopes and putting the stamps on. (I know you thought “my people” were going to do this for me… how many times do I have to tell you I don’t have “people”) so yeah, you even get the bonus of my saliva. (shudder)
Hugs to all of you who missed out… even better than hugs, here’s a “stocking stuffer” to get 15% off your order at www.signingtime.com and www.signingtime.ca
Through December 31, 2010 use Coupon Code: coleman

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They Are Gonna Love You

Okay, so you all know that The Signing Time Family is growing… right? No… literally, our families are expanding with more children. (This is not about another DVD or board book)

Yes, my sister Emilie just had her third child, a baby girl, six weeks ago… still nameless… I know. Get over it. She almost has a name. But, I already blogged about that.

This… this… I haven’t ever blogged about.

You see… well, now I have an announcement to make…

Some of you may want to sit down for this one.

No. I mean it.

Sit down.

I have a third child as well… and it’s a girl!

But, before you start mailing pink baby outfits and headbands with big flowers on them… keep reading.

Oh Heavens… where to start? Ummm, ok, so you know how on my CD “Shine” there’s that song “Nobody Would Know”? and in the liner notes it talks about how that was the very first song that I ever wrote and that I wrote it when I was 17 years-old? And some of you had written to me wondering how it could be that I wrote a song like that BEFORE having Leah and Lucy. Some of you listened to a certain line in that song and thought… “Wait a minute!!! Could it be?” But then you know that I share a lot. I share the good, the bad, and the awkward and you convinced yourself that something THAT big, would’ve been shared by now.

So, here’s the thing. The truth is… I don’t share everything. Especially when it might impact someone else’s privacy, their life, and their choices. I don’t share it, even if it’s indescribably intertwined with my life, my experiences, and even if it has totally shaped who I am and why I care about the things I care about. Vague enough for you? Well, cut me some slack. This isn’t easy.

The day after Mother’s Day, I sat down to my desk after getting Lucy out the door and on the school bus. I opened my computer, opened Facebook and collapsed on my keyboard in helpless and happy sobs as I saw the message that I had waited more than eighteen years to receive.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Facebook Private Message

    Laura S. May 9 at 4:53pm
    Happy Mother’s Day 🙂 You’re always in my prayers and in my heart.
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Aaron walked in and seeing my state asked, “Ray? What happened?”
“LOOK!!!” I could barely speak, the message may have been short but it was enough to level me emotionally and immediately, “IT’S… IT’S TODAY!” Aaron looked at my screen and started crying too. We hugged each other and sobbed and laughed and sobbed some more in happy disbelief.

Aaron had waited 15 years for this moment. I had told him on our very first date about the baby girl I had placed for adoption. He hadn’t even blinked when I told him. It wasn’t something he fought to deal with or accept. He just told me about his very close friends who had gone through the same thing and he told me how much respect he had for anyone who could give their child to someone else. Through the years Aaron has held me as I cried on my baby’s birthday, on Mother’s Day and the countless other times I found myself mourning the loss of my very first baby girl. I had only held her in my arms for three days, but my heart has never let her go.

I messaged her back as quickly as I could type.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Rachel de Azevedo-Coleman May 10 at 8:41am
    You just made the last 18 years of my life!
    I don’t think you can possibly fathom how much I adore you. How much I have missed you.
    How much I love you!
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I could hardly function that day as I waited for her response. I had a news interview about running the Salt Lake Half-Marathon and honestly I didn’t even shower before the news crew arrived. I was glued to my computer screen waiting to see what words she might grace me with next. Words I had waited almost 2 decades to read.

The previous day, Mother’s Day, I had started crying as we drove from the luncheon with my mom, to dinner with Aaron’s mom. We were in the car around 5:00pm. “What is she waiting for?” Tears streamed down my cheeks. “I mean… it’s not like I really thought she was going to show up on my front porch the day she turned 18, but I guess I didn’t realize how that date… how that was the date I was living for… I don’t know. I always imagined that I would be at her high school graduation… What is she waiting for?”

I can’t tell you how many times, since 1992, I had calculated how old I would be in 2010. Especially in the beginning, when I’d wake in the middle of the night hearing the echo of my baby’s cries in my head, I just needed a goal. I thought if I could hold on until then… it would be okay. February 2010 was my “finish line.” But, her 18th birthday had already come and gone. Leah, Lucy, Aaron and I had celebrated by going out to dinner and we had cupcakes. We’ve celebrated her birthday every year.

“Mommy,” four-year-old Leah signed to me enthusiastically, “I’m your first baby. Lucy is your second baby. I’m the oldest!”

      “Nope. Remember?” I pointed to the smiling baby pictured in the gold, sun-shaped frame on the mantel. “She’s my first baby. You are my second baby and Lucy is my third baby.”

“Oh! I forgot!” Which sounded like “Oh I-per-dot.”
Leah and Lucy grew up seeing the baby on the mantel smiling down on them.

“Mom, I hate this!” Twelve-year-old Leah threw herself down on my bed in tears. “I hate that I have a big sister, but I don’t have a big sister! I really need one right now! I don’t understand how you were ‘too young’ to keep her, but only four years later you were suddenly old enough to have and keep me!”

When I was seventeen I really did believe that nobody would know or really understand how much I hurt and how much I suffered. I guess I was too young to imagine that my future children would inherit the pain and that they would share my loss.

After Mother’s Day dinner with Aaron’s family, we came home, put the girls to bed and watched a movie. My phone had died at some point that day. I went to bed with no idea that while I was crying in the car, my oldest daughter had already reached out to me.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Laura S. May 10 at 2:11pm
    I think it’s been 18 years too long. I should have made contact sooner. I love and miss you and my little sisters. 🙂
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Each message started a new wave of tears. “She said ‘my little sisters'” Aaron cried, “she didn’t call them her half-sisters.”

In the world of adoption, I think we all just want to be wanted.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Rachel de Azevedo-Coleman May 10 at 5:21pm
    We are ready when you are. I haven’t told Leah and Lucy yet because they would both be sitting in the car waiting to drive down to meet you.
    Lucy has said if she ever got a wish from “Make A Wish” she would only wish to meet you.
    I have a million things I want to tell you and there are a million things I want to know. I want to hear all of your stories. I want to hear you sing. I want to see you perform. I’m nervous and thrilled and I don’t want to mess anything up. I’m afraid of disappointing you. I’m afraid of overwhelming you. AND I’m supposed to be a grown up here!
    Mostly I’m afraid I’ll wake up just like all the other times I’ve been this close… I’ll wake up and find it’s just another dream.
    ~R
    PS- you are just so beautiful!
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My heart is healed.

The happiest day of my life”

So, are you going to tell your Signing Time fans?”

      “Of course I am… I’m just trying to figure out how. I mean… people’s heads are gonna spin!”
          “Yeah, I bet you probably don’t want them to know that you had a baby when you were 17.”
      “WHAT? That is not it at all. Laura, look at me. I am not embarrassed or ashamed. You are not a secret! I don’t care what anyone thinks! I’ve been waiting for you for… for your whole life! I am so happy I want to shout it from the rooftops! I love you! We love you! And you know what?
      They are gonna love you too!”

Here’s to 18 Years of Laughter

Don’t Give Up Hope

Last week I was at my sister Emilie’s house, she opened up a file on her computer and slid her laptop over to me saying, “This is Alex’s essay for his English class. He said I could share it with you.”

A little while later Alex came home from school. I asked him if I could share his essay with all of you.

I share a lot of what goes on behind the Signing Time scenes and in our day-to-day lives, but as much as I wanted to share our loss over the past three years, it wasn’t mine to share.
Are you shocked… you don’t know everything? 😉

So… since Alex gave his permission… today my Guest Blogger is my nephew, Alex Brown.
(Kei Malone grab a tissue. You have been warned!)

Don’t Give Up Hope
~Alex Brown

When I was four years old, I was on my way back to my house. I got out of my grandparents’ car. I ran as fast as my little legs would carry me. MY MOM HAD A BABY! I was so excited I managed to push all the midwives out of the way and smacked the doorframe at top speed. I got back up and ran. I didn’t care. I was a big brother! I came in and my new little brother, who still wouldn’t be named for weeks to come, was laying asleep on the same blanket that to this day is still his favorite blanket. I am not kidding, he was literally a square. He was short and fat. He was sleeping right next to my mom, who was almost sleeping.

Now when Zach (that’s what we named my little brother after a couple of weeks) was four years old, my parents tried having another baby. Everything was going well. The baby (which later turned out to be a she) was moving and was healthy. Then we got into the second trimester. Everything was going well. Then at her twenty week ultrasound, there was no heartbeat. Somewhere around sixteen weeks, its heart stopped beating. It was a tragedy. My whole family was crying for weeks. We couldn’t believe it. Two babies and nothing went wrong, now one died. The doctors could not find a solution. It was as if the baby just up and died. A couple of weeks later, we decided to get on with our lives. We had fun, but no one could stop thinking about the baby.

Two years went by. We still couldn’t stop thinking about the baby that died. Finally, my mom was pregnant again. We were all excited. Everything was fine. The heart was beating, it was healthy, and nothing was wrong. Finally, we made it into the second trimester. Again the heart was beating, it was healthy, and nothing was wrong. We passed sixteen weeks. We were all a little paranoid. My mom went for her eighteen week checkup and it happened again. Its heart had stopped beating. Again, no reason for it, it just up and died. We cried for a few months this time. The doctors could find no explanation. We had to get on with our lives for real this time.

Nine months later my mom surprised us all. She was pregnant again! Everyone was amazed. Then we all thought, “Third time’s a charm.”
We made it into the second trimester. Everything was the same. She was healthy, she was moving, and nothing seemed wrong. As my mom went in for her checkup, every one was holding their breath thinking “third time’s a charm. . . third time’s a charm. . . third time’s a charm. . .” She called. When she shared the news we all gasped, only this time in excitement. The baby was alive!

Everything was fine. The heart was beating, it was healthy, and soon my mom could feel her kicking. Lucy, my ten-year-old cousin with spina bifida, said “can I feel?” she wanted to feel her kick. Doubtingly, my mom put Lucy’s hand on her stomach. Almost at once, the baby donkey-kicked her hand! They both screamed, startled and excitedly at the same time.

Later my mom was diagnosed with gestational diabetes; a disease that women sometimes develop during pregnancy. She had to be careful of her blood sugar. We were in the third trimester. We could actually feel her kicking now, and not just soft taps, they were to the point where they were donkey-kicks every time!

I finally started seventh grade. I now have to get up at six thirty every morning just to make it to jazz band. On September twentieth, my mom was having contractions. She went to the hospital while I went to sleep. I got a call at 6:15 in the morning from my mom. We had a baby girl! The baby is now about two weeks old. She happens to be crying next to me right now as I finish this essay.

So, in the end, I learned never to give up hope. If we had, I wouldn’t have his adorable little sister. Also, I learned that sometimes things don’t go the way you planned, but they turn out right in the end. Last I learned that good things come in small packages. Wait, I smell something. WOAH! I guess not all small packages have good things. . . take this dirty diaper for example. Now excuse me while I grab some baby wipes.

I’m Sorry, Your Child Is Stupid

I asked myself, Rachel, if you only had 1 year left to blog. What would you write?

I would write this…

Our experience raising Leah is not typical, not typical at all. I dare say, we have successfully raised a deaf, bilingual child.

We did it in a school environment that called us “crazy.” In Leah’s Individual Education Program (IEP), where she transitioned from Early Intervention to preschool, we were asked,

“Why do you want ASL? No one else wants ASL.”

I didn’t care what the district said, because really, we had nothing… or was it everything, to lose.

The Parent Infant Program representatives from the state agencies told us that our child would graduate from high school with a third grade reading level. Then we asked them,

“Why do you believe that a child who cannot hear does not have the ability to learn?”

We asked them,

“What are you doing wrong? What is wrong with the education of deaf children in America?

These questions kept us awake at night. Why on earth was it acceptable that generations of deaf children were being failed by the only school systems available for them to attend? It became VERY, VERY clear that we could not and would not entrust our toddler’s education to such an admittedly broken system. They could guarantee that after TWELVE years of schooling Leah would have broken English and at age 18 she would be able to read like an 8 year old. They would not prepare her to compete with her hearing peers heading to college and into the work force.

The solution offered was an embarrassment and I imagined what the reaction to that statement would be if it was said about any other group of individuals… Take a deep breath and try out the following~

“I’m sorry, your child is black. They will graduate from high school with a third grade reading level.”

“I’m sorry to tell you that you can expect your child to graduate from high school with a third grade reading level because she’s a girl.”

Go ahead and fill in the blank- “Hispanic” “gay” “has blue eyes” “short”… fill in the blank!
ANY of those statements would be met with riots! No one would swallow it as truth! No one would stand for it! It wouldn’t just be the parents up in arms, the entire community would fight for those children!

Imagine that your state-funded school had the balls to say that about ANY child!! These are your tax dollars at work.

Now, my friends, let it sink in that this is the reality for parents just like me. The Utah School for the Deaf and Blind said, “statistically you can expect Leah to graduate from high school with a third grade reading level.” Parents of deaf children have been hearing that sickening statistic for years and not just in Utah- this is a nationwide epidemic. The worst part is… parents believe it! They look at their little deaf child and believe that their potential is limited because some stranger from a state organization says so.

Where is the class action lawsuit?

Every child with a disability is guaranteed a “free and appropriate education”.

This conversation should make you feel sick.
It should make you angry.
It should be on the local and national news repeatedly until it is resolved!

For some reason, Aaron and I didn’t believe them. Instead we believed that we could offer Leah something much better than that. We would do it. We didn’t know how, but we knew that she was deaf, not stupid.

We sought out deaf adults and found many who had college degrees and PhDs!! Proof that a deaf person could succeed academically! Most of these deaf adults had deaf parents. Their parents had never struggled to accept that their child was deaf. These deaf children were in a signing environment from day one. We asked deaf adults for their advice on raising our deaf child. We asked them because they had lived the life that we wanted Leah to live… a life without limits. We followed their advice. We looked to the Deaf Community as our compass. They told us that Leah’s first language should be American Sign Language. They said that once Leah had a solid first language (ASL), we could then teach her English through reading and writing.
Finally something that made sense!

We were excited to share this breakthrough with the Early Intervention team, with the School District, with all of those people who could make a difference for every deaf child. We told them what we had learned and what we wanted for our child and why we believed it would work. They looked at us like we were crazy. They told us we needed to pick a program that they offered, they weren’t going to make up a new program just for Leah Coleman. It was such a slap in the face to have them simply re-offer their broken system, since that was all they had.

We visited every preschool in their system. We drove hundreds of miles to do so. We were looking for a teacher, the right teacher. At each school we saw the same sad scenario, the deaf children did not have free, expressive conversations, they were signing by rote.

Each time we met the teacher they would ask, “What’s her name?”
I responded, “Ask her.”
“NO! Don’t tell me she can…” and they would turn to Leah, asking her in sign, “What’s your name?”
Leah responded by fingerspelling her name “L-E-A-H” and then showed them her Name Sign.
The teachers, one after another were stunned.
“How old is she?” They asked me.
I rolled my eyes. “Ask her.”
“NO!!!” They turned excitedly and asked Leah, “How old are you?”
Leah smiled “I’m two-years-old almost 3. I’ll be 3 in December.”

It was as if they had just discovered a new species. They were fascinated by her. Then they would then sit down with Leah and ask her everything they could think of. Leah chatted on and on about this and that, her favorite colors, foods and the people in her life. The teachers were completely engaged.

And every visit ended with them saying, “We really would love to have her in our class. She would be such a great language role model for the other children!”

It was nice that everyone wanted Leah, but I had a sick feeling in my stomach.
A nagging question.

Who would be Leah’s role model?”

There was no ASL classroom and so we created one. We chose a deaf teacher and then we wrote into Leah’s Individualized Education Plan (IEP) that she needed to be in a language rich environment, one where she had access to acquire her natural language, ASL. It sounds simple, really and no one was opposed to writing that in to her IEP… BUT… when we explained that ASL is a visual language and it requires two fluent signers in a room for a child to have natural language acquisition, the team was a little perplexed. See, that is how we were able to get Leah a one-on-one aide. Her aide was fluent in ASL and the teacher that we chose was deaf. Now there were two signers in the class and our child actually had an appropriate and effective language model.

In school Leah could not communicate with her peers. They stared at her blankly as she signed on and on about this and that. Then she started coming home signing like them. I was horrified! All of our hard work seemed to be dissolving right before my eyes! I asked, “What did you do today at school?” Leah would respond in a repetitive, almost robotic way, “BIKE-BIKE-BIKE” she signed, not making eye contact with me. Then “EAT-EAT-EAT” “PLAY-PLAY.”
“Leah. Leah. Look at me. What did you do at school today? I’m asking a real question.” Every day the same answers by rote. She would sign like that for about an hour and then finally ease back into being the expressive, happy kid we knew and loved.

We went to the school and visited the older grades. K-4 we saw the same thing. As I looked at the projects and work displayed on the walls in each classroom, it was obvious to me that these children were not doing grade appropriate work. As far as language level, Leah was testing at the level of the deaf 4th graders, but she was only three-years-old. We couldn’t put her in with nine-year-old.

We also created a Deaf Mentor program for Leah. Leah had a Deaf Mentor when we lived in Utah, a wonderful woman named Diane would come to our home each week and teach us ASL. There was no such program when we moved to Los Angeles. Luckily it was in her Individualized Family Service Plan(IFSP) and so we continued it. We were told that it would be up to us to find the deaf adult. We agreed. We found a deaf man who was a teacher working for our school system. That made it easy for them to pay him. John came to our home once a week for an hour and we turned our voices off and just signed.

People always ask us how we did it. How we were able to smash the statistics. How Leah can comfortably identify herself as hearing and as deaf. The above is just one piece of that puzzle. We knew that Leah’s success was ultimately up to us. We couldn’t even pretend that the current school system would carry her. We took on her education and success as our own responsibility.

Most importantly Aaron and I saw Leah as a wonderful little girl with a bright and limitless future. We saw her as all of that even when so many others… so many “professionals” only saw her as a deaf kid.

Run With Your Life: Part 2 – No Exceptions

Once upon a time~
Someone sent me a link to a video about Team Hoyt. This was a long, long time ago. As I watched this father push his son, I was floored. I was inspired. It gave new meaning to “strong enough.” At the time I didn’t think that it had much to do with me, but I never forgot those images. I never forgot the love.

Last year when I registered for both half-marathons, I admit, I checked the rules. I looked to see if a stroller or a wheelchair would be allowed. The rules clearly stated that wheelchairs and strollers were NOT allowed. Did I secretly give a sigh of relief? Maybe. I’ll never tell.

This year I checked the rules again as I registered for the Salt Lake City Half-Marathon. Nothing had changed. In fact it stated “No wheelchairs. No strollers. No exceptions.” I was checking the rules for myself… sort of, I mean Lucy hadn’t even asked about it. I just wondered how it was that Team Hoyt seemed to find so many races that would allow them to participate when so far I was ZERO for Three.

And then one day not too long ago she said it…
I was in the kitchen. Lucy was on the sofa reading. She looked up and said, “I really want to run a half-marathon.” My heart sank just a little because… I had already looked. I already knew the answer was “no.” I smiled at my daughter and said, “That would be fun wouldn’t it?” But, I could still see the words “No Exceptions” clearly in my mind.

When Leah registered to run the half-marathon with us there was a part of me that felt even worse! What was I going to say now? “Sorry Lucy, see Leah’s just deaf and you… well, you got a bummer deal on the ol’ legs. You can’t walk and you can’t run so you get to stay home with a babysitter. Chalk one up for spina bifida and cerebral palsy.”

More than two weeks had passed since I made the call. YES, I made the call. I set the girls up with their homework and I went outside on the front porch. I shut the front door and I called the Race Director. I got his voicemail and I left the most compelling message I could muster up. In the face of No Exceptions, I was just committed (or crazy) enough to ask for one anyhow. I actually said, “I am calling to ask you to make an exception.” (Bwahahaha!)

Weeks went by and no one called me back, so I posted “Run With Your Life” and I only talked about Leah joining us in the race which was exciting and amazing and… I knew something was missing. You knew it too. You asked about Lucy in your comments.

Then… two days later I got word.
THEY WOULD MAKE AN EXCEPTION!
Lucy was in!!!

I might have jumped up and down in my front yard and whooped and hollered a bit. I just might have.

I couldn’t wait to tell Lucy. As soon as she was off the school bus and the bus engine had faded enough for us to talk I told her, “Lucy, I have really exciting news! You can do the half-marathon with us! We can all run as a family!” Lucy’s eyes were wide with disbelief. She put out her arms to hug me. Her eyes welled with tears. “Can you believe it Lucy?” I asked.

Still slightly shocked she looked up at me with a huge smile and said in a half whisper, “I am going to get a medal!”

We hadn’t been training with her and now the race was only a month away. We didn’t even own a jog-stroller. I called my friend Mike at Baby Bling Design Co. I knew that even though he doesn’t make the kind of stroller that I needed, he could tell me what I needed and point me in the right direction to find it. Like I said Mike doesn’t make that kind of stroller but as luck would have it he just happened to have one that he had used as a prototype for sheepskin stroller inserts. He had been trying to figure out what to do with this brand new jog-stroller in his warehouse. (Are you kidding me?) Within two hours of our “exception” Mike had donated the stroller and it was on its way to us!

And that’s how it happened that THIS Saturday Aaron, Rachel, Leah and Lucy Coleman will ALL be participating in the Salt Lake City Half-Marathon!!!
You can jump up and down a bit and even whoop and holler. I wont tell. Or better yet, if you are in town we would love to have you cheer us on. I think we’ll be pretty easy to spot… see, we’ll be the ones with the stroller.

Run With Your Life - No Exceptions

~With special thanks to Team Hoyt for paving the way and special thanks to The Salt Lake City Marathon Race Director, Scott Kerr for being a “Yes” in a world full of “No”

Run With Your Life

At the beginning of 2010 I set a goal to complete my first triathlon and to run two half-marathons. (I like to do my marathons one half at a time.) And while I was setting goals, I decided to go for breaking my personal record of running 13.1 miles in 2:05:02. This year I will break the 2-hour mark.

Do I really think life is going to simply unfold just the way I plan it? You would think by now that I would know better than that.

Here’s what happened…

My 11-year-old nephew Alex (yep, that’s the Alex you all know and love) joined a Run Club. He began running three days a week after school with trainer Kasey Payzant and her club, which includes about twenty-five kids, ages six to eighteen. Then… my 13-year-old daughter Leah joined. Most of the parents drop their kids off to run for an hour, and pick their kids up later. That’s fine for most parents, especially since the Run Club is geared toward kids, but my husband Aaron and I like to do things a little different so we asked if “big kids” like us, could join too.

By the time we joined, many of the kids in Run Club had already committed to running the Salt Lake City Half-Marathon in April. Aaron and I were already registered. Last year, Aaron and I ran two half-marathons and we crossed the finish line before our two daughters, sleeping soundly at home, had even woken up. Come to think of it, we go to the gym when our kids are at school. Aaron and I often hit the ski slopes right after the bus picks up Lucy for school in the morning. My kids haven’t seen and may not even know about most of the physical activity and training that goes on in their parents’ lives!

And then… Kasey, our trainer, did something I had never thought to do.   Continue reading

Creating The Year 2010

Every year, especially around the time of my wedding anniversary, I hear comments about how X percentage of couples that have one child with a disability, get divorced. And how Aaron and I have truly beaten the odds by having a marriage survive this long with both of our children having disabilities.

I don’t care much for statistics- I’ve shared before that one in one thousand children are born profoundly deaf AND one in one thousand children are born with Spina bifida. Aaron and I got one of each… go figure. I am no expert in statistics, but from what I hear the likelihood of getting two – one in one thousands is actually- one in a million. There’s something about that that makes me smile. (Dear stat experts, if it’s not true, don’t burst my bubble… just keep it to yourselves)

I do like to think we have somehow beaten the odds. But, I don’t want to lead you astray either. See, it has not always been pink and rosy. No actually there were years… YEARS and YEARS where when we were asked how we manage it all, the answer was this, “Well, neither one of us wants to do this alone.” (Not super inspiring is it?) Even three years ago, if you had asked how Aaron and I “keep it all together” I would have told you, “Neither one of us wants to do this alone.”

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