Thursday, December 9, 2010

Rachel Coleman: 'Live big and live loud'


































Rachel Coleman (photo right) is the founder of Signing Time, a company that produces sign-language videos for children, and mom to daughters Laura, Leah and Lucy. Leah, 14 (top of photo), was diagnosed with a profound hearing loss at age one, and Lucy, 10 (centre), was diagnosed with spina bifida in utero and cerebral palsy at nine months. I interviewed Rachel about parenting two children with disabilities and the success of her Signing Time videos, which sell in over 20 countries. Thank you Rachel, for sharing your wisdom with us! Louise

BLOOM: How did you feel when you learned your children had disabilities?

Rachel Coleman: Well, with Leah, it was shocking to find out that for her first year she had been deaf and we hadn’t even known it. There was a lot of guilt with that. I was a stay-at-home mom and I was with her all the time and I felt really guilty for not recognizing it earlier. I remember the day the ENT called to tell us she had a severe to profound loss. I was in the car with my husband Aaron and Leah was in her car seat. Aaron and I just started crying. My whole family is musical. My grandmother was one of the King sisters in the King Family television show. I was a singer/songwriter. Music is what we do. We have Christmas so we can get together and sing. I couldn’t think of anything worse: that she would never hear a note I sang or a story I read her. We went home and lay on our bed and cried.

The funny thing was that our little toddler was standing at the end of the bed looking at us, with a concerned expression: “Why are my parents so distraught?” We realized in that moment that there was nothing wrong with her. We were upset because we had just found out the news that she was deaf – but she was just fine with being deaf. We took Leah’s perspective and the viewpoint that she’d always been deaf. We decided that we didn’t have to fix it we just needed to educate ourselves and figure out what to do. We thought since  her ears don’t work but her eyes and hands work fine, we should start signing.

Two years later, we went for an 18-week ultrasound and were told our second baby had spina bifida. One in a thousand children have spina bifida and one in a thousand are deaf and the odds of getting two of those children is one in a million. I went home from the appointment and cried. I was so mad. We’d done so well with Leah, and not letting her disability get the best of us, and then to be hit with spina bifida seemed so unfair. We were sitting on the bed bawling and I sat up and said “This is exactly how I felt when we found out Leah was deaf!” Then I remembered the realization we had about Leah’s deafness. “What if, like Leah, Lucy just has spina bifida, that’s the way she’s coming, and we can educate ourselves and do our best to give her the most amazing life we can?”

I think parents get stuck on ‘why does this happen?’ We could sit here and cry and say ‘why us?” but it wouldn’t make any difference. There is no why. Besides, I wouldn’t be any more empowered in my life or as a parent if I knew why. It’s just nature, it’s not personal. I didn’t do anything to deserve it. It’s random. Focus on what actually makes a difference everyday for you and your children. That means finding the resources that are available to you and talking to parents who are already years further down the path.

BLOOM: How do you meet the different needs of two children with disabilities?

Rachel Coleman: Their needs are so different. Lucy has had numerous surgeries and she has gear: a manual wheelchair and power wheelchair, a walker and lots of seating equipment. She’s finally big enough that we have to think about getting an accessible van. You don’t have to do those kinds of things when your child is deaf. With Lucy there are appointments and resources and things that cost money and it’s a lot of stuff to manage every year. With Leah there were hearing aids and she got a cochlear implant at age seven, which included intensive speech therapy, but Leah’s disability doesn’t require as many appointments. Both girls need services at school. There is a lot to track and manage. But I guess that’s just how it is when two of your children have disabilities. Sure, we changed our life to fit all of this in, but I don’t even think it has to do with the disabilities as much as just having children. Even when you get married you make accommodations for another human being. You do the same when you have children. Though there was that moment of surprise: I never thought this would happen to me. I didn’t think I’d have one kid with a disability, let alone two. The biggest shocker was when I realized that this could happen to anybody, including me.

We deal well with the girls’ needs as a family, but once we leave the house we have to deal with everyone’s opinions about us. We’re signing and we have a wheelchair so people stare at us. In the beginning there was that protective instinct – I wanted to be like everyone else. I thought: Do I have to explain everything about my children to everyone? I’ve seen a lot of parents end up with a chip on their shoulder. Over time, I decided that maybe it was my job to educate. If someone has the guts to ask me about my family, then I can have the kindness to answer.

When Lucy was a baby, I was holding her while in line at a restaurant and she was arching and screaming and I was on my cell phone. A boy came up behind me and said: “Hey lady, your baby has a big head.” Lucy has hydrocephalus. I thought: Didn’t your parents teach you any manners? I’m sure the red was coming up my chest and face. I ignored him. Then he said it again: “Hey lady, your baby has a big head.” I didn’t say anything. So he taps me on the shoulder and repeats it a third time. I turned around and before I could say anything, he says: “I bet she’s going to be really smart.”

In that moment I saw how much meaning I added to his words. I thought he was mocking Lucy because she had an adult-sized head, when he was just trying to compliment her because he thought she was going to be a genius. I learned that we bring our own fears and inadequacies to what other people are saying to us. Sometimes we can’t even hear what they’re saying because our thoughts are so coloured by sadness or loss or mourning. I realized that I may think people are judging me and my kids and their disabilities, but in reality I’m judging them 100 times more before they even open their mouths. In that moment with the boy, my heart softened. I dropped my guard and let that chip fall off my shoulder.

BLOOM: Your blog is called Strong Enough to Be. I often feel like I’m not strong enough to manage the many issues my son has, or to get him the life he deserves. What does this title mean to you?

Rachel Coleman: I’m not super mom. There are more times than I like to admit that I’ve curled up in the fetal position in tears saying: “I can’t do this!” In the beginning when people would say ‘You only get what you’re strong enough to handle’ I would get so mad. I wanted to yell: That’s a lie! There are days and times and months when I feel like I can’t handle it.

Strong Enough to Be came from a moment two years ago. We were in Mexico with my siblings and their families. All the kids were going swimming with dolphins. Lucy has a lot of anxiety and she was opting out of a lot of the adventures. I saw a brochure for a glass-bottom boat tour. It turned out it was a submarine with windows. We would get on a speed boat and go into the middle of the ocean and transfer onto a submarine. I showed it to Lucy and she wanted to go. I went to the desk to book it. “I have a child with a wheelchair,” I told the man. He said they couldn’t put the wheelchair on the bus to the dock where we got the speed boat, so I would have to carry Lucy all day. I still signed up, and that night I couldn’t sleep. I had nightmare after nightmare that I was carrying Lucy across a desert or over mountains. Carrying Lucy is like carrying a four-foot stiff doll who weighs 50 pounds and arches away from you. In the dream I was crying and I didn’t want her to see that I couldn’t do it. I wanted so badly to keep my promise to her.

I woke up and I was horrified. What have I gotten myself into? I’m not going to let her see how scared I am that I might fail her, I thought. I’m her legs. She can only go where I take her in this world that isn’t accessible, that isn’t always paved with ramps and elevators and buttons to open doors. I can be her legs. I can do this for her. We got to the submarine and I stepped off the speed boat in the middle of the ocean. Holding my 50-pound child I walked down the windy stairway and I almost started to cry, thinking: “I can’t believe I did it.” We saw sea turtles, beautiful coral and amazing fish. That was the moment when I saw how strong I can be because of Lucy. The whole world tells her ‘no’ – they look at her wheelchair and say ‘Sorry, no, you’re asking a lot here, we have to make accommodations we’re not used to.’ What if I’m her ‘yes?’ What if Lucy can count on her mom being a ‘yes’ in a world of ‘nos?’ There are mountains I’ve climbed with her on my back and I don’t know if I could have done it without her there. She can hear my breathing become labored and she’ll whisper: “I love you so much, thank you.” To have a little 10-year-old angel on your back – it’s almost like there is no possibility of failure. It pushes me to do things I would never even dream of doing.

Strong Enough to Be is not about always being strong enough to handle things, and doing it with a smile and grace. It’s about looking at the amazing gifts that our children are in our lives and acknowledging the experiences we would never know and never have if we didn’t have children with disabilities.

BLOOM: How did Signing Time come to be?

Rachel Coleman: Leah was four and she was the only deaf kid in the community. She was becoming more isolated and invited to fewer parties. One day I was interpreting for her on the soccer field and the coach asked a boy to be Leah’s partner. “I don’t want to be with Leah because she can’t talk and she can’t understand me,” he said. My first instinct was to be a little mad, but I thought: ‘That’s what’s going on with these kids! Is there something I could do to make a difference for this boy?’ If nothing else, that is the most important thing for parents to keep in their side pocket, in those moments of frustration: Ask ‘Is there something I can do that would make a difference?’ I called up the boy’s preschool and asked if I could come in and do a sign language story time and I went twice. The next week, on the soccer field this same little boy came running up to Leah and signed: ‘friend, play, ball.” It only took three signs, and he wasn’t afraid of my kid anymore. ‘That’s something I can work with,’ I thought.

A couple of weeks later my sister Emilie called and asked me if I wanted to make a video for children about music. Because I made the assumption that Leah could never access or understand music, I had quit music. “No way,” I said, “Not music.” And then I suggested we do a video to teach sign language. Emilie had started signing with her son Alex from the time he was a baby. We came up with a list of 18 signs that Leah and Alex had used from the start. I wasn’t in the show and there weren’t supposed to be any songs. We filmed it, having Alex and Leah teach the signs. But they were three and four years old and they were not very good teachers. Emilie said “We need someone to demonstrate the signs, and it’s you.” I begrudgingly ended up in the show, and almost more begrudgingly, began writing songs and signing them in the show. To date I’ve written and performed over 100 songs for Signing Time.

BLOOM: Was it hard to find a market for the signing videos?

Rachel Coleman: Not at all. We weren’t setting out to create a business, we were happy being stay-at-home moms. I thought if we were to make 100 videos and give them to people who know and love Leah, that would change her world. But Emilie had other ideas. She bought http://www.signingtime.com/ and put our one VHS up there for $12.99 plus shipping. At first it was all people we knew who ordered it. And then we started to get e-mails from places further and further away. I needed this product for my child but I didn’t realize how many other moms were standing in my shoes saying: “Why isn’t a produce like this available? My child has autism. My child has Down syndrome. My child has verbal apraxia. My child is deaf. No one can communicate with my child.” Add to that the parents of typical infants and toddlers who want signs so they can communicate with their kids before they speak and there was a market ready for Signing Time.

BLOOM: What are the greatest challenges your daughters and other kids with disabilities face?

Rachel Coleman: The greatest challenge is other people’s perceptions of my children’s limitations – and that includes me. We think we’re so old and wise and of course we want to protect our children and limit their bad experiences. I remember when Leah wanted to be in the school spelling bee. She was mainstreamed and she was the only kid in the school who was deaf. My heart was pounding, thinking this is a really bad idea. If the word doesn’t have a sign, the interpreter can’t finger spell it to Leah, because that would give her the answer. Leah was in Grade 4 and it was for grades 4, 5 and 6. Well, Leah won the spelling bee and the entire school stood up and cheered and screamed. I saw that even I limit my daughters and it’s something I will always have to be aware of and work on. Of course parents want to protect their children but we need to follow their lead: we need to let them fall, let them fail, and let them win the school spelling bee.

BLOOM: What other advice would you give parents of kids with disabilities?

Rachel Coleman: Do not default your stewardship – and the fact that you are the parent – to an expert. Ever. If an expert tells you something and your instincts say ‘No way, you’re wrong,’ then do the work yourself because they don’t live with your child. You are the expert on your child and you need to act like it and educate yourself. You are your child’s advocate. You are their voice, their champion, and you may even be their legs. It’s up to you and no one is going to come to the rescue. Live big and live loud and have fun. When parents learn their child has a disability, they often start listing the things they think their child and family will never do. And they’re wrong! If you’re going to make something up, make up a list of empowering, amazing things you’re going to do. So many parents give up: “My child has a disability, it’s over.” That’s why I do the things I do and blog about it. I even write about when things don’t go well because at least I’m trying to do things differently. I love being out there as an example of what is possible, because we’re often surrounded by people who tell us “You can’t” and “Don’t try.” Why not be a light and be an example of what is possible as a family – even with a wheelchair?

Reactions:

10 comments:

This interview really inspired me today. Thank you so much! I needed this encouragement!

Great post. My childrens' disabilities have taken me to places I would not gotten to without them

I agree with Anonymous. Thank you Rachel!

I will echo Elizabeth and anon. So Inspiring! Thank you Rachel and Louise!
Lisa

Thanks to Louise for conducting such an inspirational interview.

I KNEW there was a reason that the dads in our Down syndrome community have a crush on Rachel. She's seriously awesome. I love her authenticity and forthrightness...thank you for that. This brightened an otherwise dreary day...

Awesome! I love Rachel's attitude - and I love her videos too. Thank you for this wonderful interview, Louise.
Stacey

My husband is totally blind. I have spent most of my life in and out of a wheelchair. Our children are both healthy, which is wonderful. I kind of see us as the future of children with disabilities. If we are allowed to live our lives the way we choose and are willing to work hard, there is so much we can do! When I was dating, my mom told me not to say anything to the guys I date about being in a wheelchair (at the time I was walking ok with nearly invisible knee and ankle braces) I started dating a blind guy and my mom was so quick to tell me it could never work because I am not physically capable of supporting him. I found that he has no physical disabilities other than his blindness. He is very strong and even when I weighed over 200lbs, he could lift my body and carry me up and down stairs. I can read and write for him. We complement each other in so many ways. He got me an electric wheelchair for a wedding gift. Then he could hold on to the back of my chair, so I was his guide. We now have two children. We have been married 7.5 years. I hope that parents of disabled children believe in them enough to allow them to love and be loved by many different people!

I am very pleased to meet the famous Rachel, too! Thank you, Louise!

Barbara

Thank you everyone for your comments.

And Chelsea -- I LOVE your story. It sounds like you have an AWESOME family. Thanks so much for sharing with us. Louise

Fabulous post Louise. Rachel is so inspiring! I loved her Strong Enough to Be story.