Covered In Love

Covered In Love: Our Experience With Canine Companions for Independence

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Fam

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

Aaron at CCI

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

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

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

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

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

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

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

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

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

Lucy at Seaworld

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

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

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

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

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

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

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

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

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

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

She agrees.

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

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

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

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

Welcome Colemans

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

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

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

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

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

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

Day 1 CCI

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

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

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

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

She's ours

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

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

Lucy and Wilona

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

Sleepy Girls

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

Sunset Plus 3

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

At The Pier

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

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

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

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

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

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

Looks Like Love

Wanna Play?

First Day of School

At the Hospital

In the Car
Snow Day Wilona_0039

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

California Girl Takes Utah Girl to Disneyland

I’m a California Girl and California Girls don’t go to Disneyland on weekends or holidays. We go to Disneyland on overcast, slight chance of rain days, in the middle of the week.

My family moved from Southern California when I was 11 years old. I am not sure that I ever really became a Utah Girl, but that’s not really the point. Once in Utah, I was struck by my peers’ conversations about Disneyland. “How many times have you been?” They were one-upping each other on the bus. “Four times” or “five times” produced dropped jaws. I kept quiet. I shook my head. Oh, those poor theme-parkless kids. They’d never believe me, even if I could add up all of those trips and produce a number for them.

Now, I have Utah Girls of my own. And I get it. Disneyland is no longer a mid-week, skip school, stay for fireworks and drive home exhausted kind of thing. It is an event. It is a… dare I say it? A long weekend kind of event, now that we live in Utah. My cute girls have no idea of the personal rules I break for them. Taking on Disneyland on a weekend? Sheesh!

Nevertheless, we do these things as parents… we do them for our children.

But… I still have an unfair advantage over the rest of you who are investing hundreds of dollars on a weekend, where your kids had better have fun, they’d better like it, and they’d better behave because it costs a small fortune just to walk through the metal detectors and finally cross the threshold to the Happiest Place on Earth.

Happiest Expensive Place on Earth

Happiest Expensive Place on Earth

Yes, it’s true. I have an unfair Disneyland advantage… I have a child in a wheelchair.

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Now, if you can’t hack this conversation, click away. I’m just telling it like it is. 😉

It used to be that a wheelchair, in Disneyland, was akin to a free ticket. Not “free” free, but pretty close to it. This fancy wheelchair used to allow us to walk right up the exits of rides, wait a car or two and then ride away in complete bliss. Especially blissful when you realize how many other folks were left juggling tired children, backpacks, strollers, and $6 sodas for hours on end, often for one short spin on Dumbo.

Well, things have changed a bit at Disneyland. Each time they update a ride, they also manage to bring it up to code. California Adventure, for example is so stinking accessible, we get to wait in their wheelchair-width mazes just like everyone else. Don’t waste your time trying to get an accessibility pass in California Adventure, go to Disneyland for it.

When Lucy and I went to Disneyland, we went with our friends Emily and Millie. You might recognize Millie as the little cherub on the cover of Baby Signing Time.

I was already in California. Emily, Millie and Lucy flew in together and met me there. Lucy and Millie held hands throughout the entire flight!

Holding Hands on The Plane

Holding Hands on The Plane

They arrived and we immediately went to the poolside restaurant.

California Girls

California Girls

Lucy ordered jumbo shrimp cocktail, her favorite.

Who You Calling Shrimp?

Who You Calling Shrimp?

I was performing the following day, so they came along to watch.

Orange shoes? Check! Colored Fingers? Check!

Orange shoes? Check! Colored Fingers? Check!

Emily spotted Scott Baio, she said that she had always wished he could baby sit her… (“Charles in Charge” reference folks) Lucy, in the background, was unimpressed.

Emily and Scott

Emily and Scott

The booth located right behind our Signing Time spot was a company called Cade Christian. Here’s the funny thing. Each year that I have presented at the Baby Celebration Los Angeles, I have drawn a good sized crowd of Signing Time Families. This crowd (Yeah, you guys) stays after and creates a substantial line for over an hour, waiting to take a photo, get an autograph and buy products. And each year some of the neighboring vendors have complained about the big, long line of parents and children standing beside their booths. (I’m not kidding.)

So, this year. I gave the Cade Christian folks a heads-up of what was to come and they said, “Oh we heard about that, so we requested to be right near your booth. They thanked me for bringing so many families to the event. And then they hooked the little girlies up with hats and sent one for Leah as well. Then Em and I bought some for ourselves.

Hat to Hat

Hat to Hat

Next stop, In-N-Out, on our way to Anaheim.

Yummy!

Yummy!

We arrived at Disneyland and checked in at City Hall to get our “perma-handi-fastpass” <---- not what it's really called, just what it does. Now, if you have just a regular kid in a wheelchair, maybe a broken bone or something, you don’t get much priority. If you have a child in a wheelchair who might have a difficult time waiting in long lines you get a little upgrade. They gave us the Super-Duper-Upgrade <---- not what it's called, just what it does- when they realized that Emily and I not only had Lucy and her wheels, but that little Millie is deaf.And we were off! We let Lucy lead the way. It was one of the few times I felt uninvested. If she wanted to ride "Dumbo" 35 times in the next 48 hours, so be it. This was about her. And by the way I stopped counting after we rode "Dumbo" 8 times. [caption id="attachment_1872" align="alignnone" width="640" caption="Dumbo at Night"]Dumbo at Night[/caption]

So Much Fun She Can't Even Open Her Eyes

So Much Fun She Can't Even Open Her Eyes

Can We Ride This One Again?

Can We Ride This One Again?


So, here are some things I didn’t know before this Disney trip.

“It’s A Small World” has been updated, and I don’t just mean the inside. The boats are all new and they have a special, wheelchair ready boat! Lucy was the queen of the world. I also stopped counting once we had ridden “Small World” 8 times.

A Small Accessible World

A Small Accessible World

After All!

After All!

If you have a child with special needs and you need a place to handle toileting, go to the First Aid Station (behind the hand-dipped corndog cart and past the Carnation Baby Care Center) They have cots, where you can lie your child down to change them in a private room with a sink and a toilet. They also have cold drinking water for free. They are cold water pushers. You almost can’t escape without cold water coming with you. This was Mecca! You have no idea how much time I spend scouting inconspicuous locations to do a quick-change for my 9 year old.

In the very accessible California Adventure, the newest ride “Toy Story Midway Mania” has wide lanes, so we got to wait with everyone else, BUT they have one car that will accommodate a wheelchair. We didn’t use it the first time, because they asked if we could transfer. I said, “Yes,” because we can transfer, but seriously that was the worst experience ever! The cars make hard lefts and hard rights with no warning. You are supposed to be shooting, but it doesn’t go so well when you are hanging on to your child who cannot sit independently. It was physically exhausting and our score was terrible! 😉 When we unloaded I let the guys running the thing know that “Can you transfer?” was not an adequate pre-requisite. I suggested they ask, “Can your child sit unassisted?” I am sure they were enthralled to hear my quick explanation of trunk control and head control and how Lucy may have just sustained whiplash and how I may have thrown out my back trying to keep her from getting her bell rung on the side of the car.

But… then they offered their fancy-schmancy-wheelchair ready car and that was a blast! Lucy sat in her wheelchair in the car and they strapped her wheels down. To make up for the first ride, they let us go two more times without waiting. But I think that was because it was easier to just let us keep riding than to maneuver that fancy-schmancy thing on and off the track. Lucy could shoot her own gun by bopping a button on top or yanking on a cord. I totally crushed her score though.

In Her Very Own Wheelchair

In Her Very Own Wheelchair


The parades were great. Lucy is not of fan of anything in costume, especially bigger than life costumes. She even hates Hopkins at our Signing Time shows… Hopkins!
Talking Cars are Non-threatening

Talking Cars are Non-threatening


Don't Stand, Don't Stand So

Don't Stand, Don't Stand So

Sully is Just Too Big

Sully is Just Too Big

And of course we got to relive memories of the infamous submarine experience in Mexico, but this time with the promise of Nemo below. And this time I wasn’t worried.

Don't worry. I've got this!

Don't worry. I've got this!

There Are Clown Fish in The Water

There Are Clown Fish in The Water

For those who cannot maneuver through the tight spiral staircase, there is another option. There’s a room that shows a movie of what you see under water. We tried both and we all agreed that being in the sub was much more fun.

Lucy really wanted to see Ariel, so we stopped by the restaurant Ariel’s Grotto on the first day. We asked about reservations for dinner the following day and were told by the hostess that reservations were not necessary. But, when we arrived for dinner the following day, all of the seatings were filled! Lucy was bummed. I explained what we were told the day before and today’s hostess said, “Reservations are not necessary, but they are recommended.” If your kiddo is an Ariel fan, don’t make this same mistake. Make a reservation.

The moral of the story is 1 in 1000 kids are born with spina bifida- if you are lucky enough to get one, then you are also lucky enough to park in the front row at Costco, even during the holidays. You also get to ride Dumbo and Small World countless times without waiting!

If ever you get stuck going to Disneyland on a busy holiday weekend, Lucy and I are available for rent.

Strong Enough To Be Your Mom – Part 2

Remember last summer, I was in Mexico having nightmares about a promise I had made to Lucy.
(If you missed that, read: Strong Enough To Be Your Mom – Part 1)

Anyway, last summer in Mexico I found an advertisement for a glass bottom boat. I thought it would be perfect for Lucy, because she is not a fan of putting her face under water. She has dysarthria<--- which came along as a sidekick to cerebral palsy<--- which came as a sidekick to spina bifida (Thank you very much).
Because of her dysarthria, snorkeling does not work for Lucy. It is tough for her to get her body to either breathe through her mouth or her nose.

I asked Lucy if she would like to see the fish, but do it in a boat and not even get wet! She loved the idea. I called the company to make the reservation. I asked them about wheelchair accessibility 😉 there was none. A bus would pick us up and take us to the main location. We would board a speedboat and it would drive us out to a small submarine. Then we would transfer onto the sub go down a tight spiral staircase to our seats below!

No wheelchair. Not for any of it. We would be gone for at least 6 hours.

Could I do it? Could I carry all 40+ pounds of her? Could I carry her as I exited a boat, out in the ocean, and hopped over to a sub?

Was I strong enough to bring her to new experiences? Or because of my lack of physical strength was she literally “bound” to her wheelchair? Was I strong enough to show her the world beyond sidewalks and ramps? The worlds of dirt and gravel and sand and water and beauty? What would she think of me if I failed her? Worse yet… what would I think of myself?

My nightmares the night before included being dropped off with her in the desert, with nowhere to rest, nothing but sand, sand dunes and smooth rocky hills. After hours in the hot sun, moving her from piggy-backing to a side carry, to baby-in-arms hold, I frantically looked for anyone who might have a stroller. Even in the deep sand a stroller would give me a little rest and we could still slowly move forward. I moved her to my back as we bouldered across mountains of rock.
When I woke up I was exhausted, soaked with sweat.

That was a year ago.

I was able to hold her as we stood in line, transferred to the boat, transferred to the sub and back to the boat. We had a great time together and I don’t think my daughter ever knew my fear… my fear that I would let her down. The fear that I might be just one more “No!” in a world full of people, who throughout her life, will simply look at her and tell her, “No.”
On the Boat Cancun '08

Something changed in me that day. I began working out harder at the gym, running faster and farther. I looked for better backpacks to carry her in.

With Lucy as our inspiration, Aaron and I signed up with a personal trainer and started training with him 4 days a week. I felt silly doing it, I didn’t want to tell anyone because it felt so “Hollywood!” (Um, YES! I TOTALLY have a personal TRAIN-ER!)
But I wasn’t going to be stopped by feeling silly or cliché. My reasons were bigger than that. When Jared, the owner of the gym, and Matt, our trainer, asked what our goals were, Aaron and I said, “We definitely need to be able to dead-lift 50 pounds, over and over and over again. Every single day.” I said, “I don’t care if I lose weight, but I need to get stronger. We have to increase our overall strength because we have an 8 year-old in a wheelchair and every day she is growing. We have to keep up with her!”

Jared Trevino, who owns our gym, Fit Forever, offered to come to the house and watch how we lift and transfer Lucy. He watched us load her in and out of her car seat. Then we loaded her wheelchair in and out of our car. Next we lifted her from her wheelchair and sat her on her bed, then moved her back to the wheelchair. Then we transferred her to her feeder chair at the dinner table.

I set her on her back, in the bottom of the tub. I stepped in, straddled her and lifted her out, stepping carefully over the edge, one foot at a time, like I do when she has a bath. (A maneuver that is much easier when she is fully clothed and dry.)

We put her in her small wheelchair and “bumped” her up and down the stairs. We put her in her stander and then pulled her out of it.

Jared then showed us how to do each of those things with correct form, giving us more strength, more control, protecting our lower backs and protecting Lucy. We had been doing it all wrong… but only for the last 9 years. :)

Our trainer, Matt Williams, says that very few of his clients train as intensely as Aaron and I train. I wonder if many of them have as much at stake as we do. We are Lucy’s legs. We are the wheelchair, when the wheelchair says “No.”

When we workout on our own, people literally stop and stare. They stop us to say that they are inspired by us and that they can see our determination. They assume we are in training for a physical, competitive event like a triathlon or marathon. When they ask what we are training for I say, “I’m training for my daughter, Lucy, who’s in a wheelchair. I’m training for our life.”

Lucy is my motivation. When I don’t want to run, I still run… and I run… because I can run. She may never run, not in her whole life, and I just won’t take my ability to do so for granted. I push myself physically so I can carry her. So I can run with her. I do it, so I can be a “Yes.”

A couple of months ago, Lucy asked, “Mom, can just you and me go to Disneyland sometime? Just you and me. Not Daddy, not Leah.” (In my mind I quietly, nervously, calculated the number of times I would need to lift her. Then I told myself to “STOP IT!” And I told my daughter, “Yes.”

Welcome To DisneylandEverybody say "Dumbo!"

“Mom, can I hike through Goblin Valley?”
“Yep.”
Goblin Valley, Utah

“Mom, can we hike all the way up to Delicate Arch?
“Absoultely!”
Delicate Arch - Moab Utah

Let’s just say it… there’s quite a difference in my physical appearance from Signing Time Series 2 to Baby Signing Time 3 & 4. Actually, I have been all over the scale map from the first show to the most recent.
wo8i2478_2dsc_5411_2

Honestly, I’ve struggled with my weight my entire life and finally, finally I’ve found something that motivates me. A reason to push myself. A reason to really ask, “Is that all you can do Rachel? Are you sure?”
One word- Lucy.

A few nights ago I carried Lucy down the hall to get her ready for bed. I placed her on her bed, so that she was sitting up and leaning against the wall. She smiled at me and said quietly, “Mom, I can tell you’re getting stronger.”

And that’s the best reward of all.

Lucy Coleman

Back To School Blah Blog

Leah and Lucy went back to school today. Shouldn’t I be jumping up and down?

Leah was up at 7 AM and made the rounds, waking us all up. “It’s the first day of school!!” She whispered excitedly. I believe some kids are built for school, and Leah is one of them. She wakes up, makes herself breakfast, gets dressed, brushes her teeth and is on her way to the bus stop, even if the rest of us are still in bed! While in class, Leah hurries to complete each assignment so she can get back to whatever book is in her desk. She comes home, does her homework and then plays with friends.

Maybe the reason I am feeling so melancholy is that I am channeling Lucy. Lucy is NOT built for school, but please don’t tell her I said so. Most of mainstream public education was not set up for “the Lucy’s” of our world. I wouldn’t want to sit (literally) from 8:30-3:30, yes she sits at recess too. She cannot do the work as quickly as the other kids and it really does take more of her energy to complete the same assignment. She is always rushed and always behind. Sometimes she just puts her head down on her desk, refusing to do any more. And does everything really need to be signaled with a LOUD, jarring bell? The poor kid practically leaps out of her skin every 45 minutes… and then there are the fire drills… need I say more? I am actually going to send earplugs for her this year!

And it’s not just that Lucy isn’t built for school, but school is not built for Lucy. Since she is in a big wheelchair, she usually ends up at the end of the line, when her class lines up. Her new classroom is set up with 3 long rows of desks, each row behind the next. Lucy can’t maneuver in between a row, so she is at the back of the class. She can’t reach a sink to wash her hands, so I send hand sanitizer. She can’t reach the water fountain, so we send water bottles. She can’t get her bin out of her desk, hang up her backpack or get it down, write, feed herself or go to the bathroom like the other kids, so she has an aide, Sally who is incredible… Lucy would do better if she could have Sally as a full-time aide, since she struggles with transitions but the district refuses to pay benefits and retirement for one full-time aide, so Lucy will have two part-time aides. And like clockwork, every week on the day that the aides transition, I will likely get a note sent home saying, “Lucy had a really hard day, she refused to work and cried a lot.” If the district lived it, like we live it, they would pay benefits, retirement and more.

This morning, Leah was off to her bus stop by 8:10. The girls go to the same school but cannot ride the same bus. Leah rides the bus with all of the kids in our neighborhood. It is not an accessible bus. Lucy’s bus has a lift in it and it is also full of kids who have different disabilities who are not mainstreamed, who do not go to her school. Having kids screaming, hollering and jumping around doesn’t work for Lucy at all. She hates the bus. We have asked the transportation office if Leah can ride with Lucy. At first we were told, “No, Leah has to have a documented disability.” (“Huh? She does!) So, now Leah rides with Lucy sometimes, and like any kid, Leah wants to ride with kids she knows, kids she likes and kids who go to her school and understandably Leah doesn’t want to be late to school every day. Yes, Lucy’s bus gets her to school late and picks her up from school early EVERY single day. Schools make a big deal out of being late, but they wave it entirely when it is their fault, which may be fine in theory but would you want to be the kid in the wheelchair who rides a bus with no one you know, who arrives to school late every single day and sits at the back of the room? Sounds like punishment, not school.

This morning the driver called and told us she would be arriving at our home at 8:45. Lucy quietly said, “I don’t want to be late on the first day.” We loaded Lucy and her manual chair into the car and took her to school. We left the heavy power wheelchair for the bus driver to deliver later. This is all after Lucy refused to eat breakfast, forcing herself to dry heave when offered toast, smoothie, juice anything. She cried 4 or 5 times about nothing and everything and I can’t blame her.

Strong Enough To Be Your Mom

If you haven’t figured it out, there are a lot of things we love to do, we love the beach, we love to camp and hike. When Aaron and I were first married we talked about moving to Alaska for a year or moving to Hawaii for a year and we talked about how great those adventures and experiences would be for our family, when we had one. Aaron and I had checked out Kauai and looked into moving there when Leah was almost one. Shortly after Leah’s first birthday we realized that she was deaf. We still pursued Hawaii and talked to Easter Seals about early intervention. We would have to island hop for audiology exams, hearing aid issues etc. We asked if there was a deaf community and were told, “Yes!! There are about 14 people in the deaf community.”

Aaron and I shelved the idea, realizing some things may need to be put off so that Leah could have all she needed. When Lucy came along it seemed like her physical limitations might also limit some of our family activities. I hated the idea that there really is not enough accessibility in many places for her.

At one point, I made a secret promise to myself on Lucy’s behalf. I would never be the one to limit our activities because of her wheelchair.

As Leah shared in her recent post, we kicked off Summer with a family (and extended family) trip to Cancun. We left for Cancun the day after we got home from the Emmys in NYC. Cancun was great! Lucy parasailed with Aaron. We sat on the beach and played in the waves. Aaron went scuba diving, Leah snorkeled. Lucy does not like putting her face in the water and still struggles with controlling her breath so a snorkel for her could be disastrous. I came across an ad for a glass-bottom boat ride and I thought it would be perfect for Lucy! She could see the reef without getting her face wet! I called for more info and it sounded good. Very, very, very last, I told them I had an 8 year-old in a wheelchair. I was placed on hold for awhile and they came back and told me it would not be possible for us to go. The boat is not really a glass bottom boat, it is a submarine. We would load from the dock onto a speed boat first, and it would take us out to the submarine waiting in the ocean. We would have to transfer from the boat to the sub and then down a series of stairs to our seats below the surface. When the tour was over we would transfer back to the boat and then from the boat to the dock.

I hung up and thought about what they had said. There was no room for a wheelchair and we could not transfer the wheelchair. Could I do this myself? Could I carry her? Could I do it without Aaron? It would be scheduled on Aaron’s scuba day, which I KNOW he would cancel for Lucy – I kept my concern to myself. I tossed it around in my mind for hours. If Lucy knew I was concerned, she would insist she did not want to go anyway. Lucy is almost 50 pounds and I would be committing to carrying her for 5 hours and transferring her 4 times! I decided that I could do it. I called back and made our reservation, this time I didn’t say anything about a wheelchair.

The night before our submarine trip I dreamt that we arrived for the adventure. I was carrying Lucy on my hip. The guide looked at me and said, “Are you crazy? We have to walk 6 miles to the boat!” In my dream I frantically asked others if I could borrow their stroller for the 6 mile trek. I think that might qualify as a nightmare.

The day of the trip, my mom, my sister Emilie and her son Zak decided to come too. The tour bus picked us up from the hotel. Lucy thought it looked like an airplane inside. When we arrived there was a long line. Mom stood in line and I sat Lucy on the counter until we were up. We made the first two transfers and the sub ride was a blast! We saw sea turtles, schools of fish, coral reefs and so much more! The ride ended just in time, as most everyone felt a little sea sick. We transfered back to the boat without a hitch.

It may seem like a little thing, but secretly I was really proud of myself.