Learning from Lucy and Leah

I found a Merideth connection in an unlikely place this week.

Several weeks ago while we were at the grocery store Natalie pointed out an advertisement on the bulletin board. She recognized the picture of Rachel Coleman, the lady on the Signing Time videos. Natalie is one of the biggest Signing Time fans. We check out a video from the library nearly every week, and it has been fun to watch her learn sign language from her own personal motivation. Natalie enjoys the videos so much that Alex and Leah, the kids from the show, are Natalie’s regular imaginary playmates. Leah, who is deaf, is Rachel’s daughter, and Alex is her cousin.

The poster was advertising a conference entitled “Unlocking Your Child’s Potential” for educators and parents, and Rachel Coleman was the keynote speaker. Excited about the prospect of earning some more education credits, I was grateful for Natalie’s keenness to point it out, and I quickly looked into going to the conference.

The conference featured speakers discussing various aspects of child development but focused on children with special needs. I was attending with the perspective of an educator looking for how to be more aware of the needs of students and how to accommodate them, although I did have a personal interest to learn more about Rachel’s story. Her keynote address was fabulous and touched me at a level I did not expect. I will try to share some of her story (warning: it’s lengthy) and hope I can express how what she said affected me.

Rachel began by saying that she didn’t “sign up” to have a deaf child. It wasn’t part of the expectations for her family. But then she countered that statement and said that actually, at the beginning of parenthood we all signed up for the whole gamut of possibilities for our child. She shared about how they found when Leah was one year old that she was deaf. They were devastated. They thought about all the things she was missing out on and limitations of the quality of life that the doctors told them she would have (including likely graduating from high school at only a 3^rd grade reading level). There were lots of tears, and it was amusing to hear Rachel describe how it all must have looked to this one year old watching all the drama around her and wondering, “What’s going on here? What is wrong?!?” At that point, they realized that Leah had always been deaf; they had always treated her as a normal child and the only difference in the whole thing was that her parents were just barely getting the news. That was all. With that realization they were able to focus more on what this news meant for their family and to look for ways to open up communication with their child and make a difference for her life.

I felt a connection with what Rachel was saying. That seems strange to say, since Leah’s disability and Merideth’s diagnosis of a heart defect are totally different. But I definitely understood the feeling of loss, frustration of having to wait for answers from doctors and helplessness when hearing that your child has a problem. I’ll interject here that it seemed that most people attending the conference were not educators like me but parents of a child or children with some kind of disability. It was a realization to me that I actually fit into that category, too. No, I don’t know what it is like to raise a heart baby. I know that there is a whole different experience for those families that I cannot relate to. But I do know what it is like to have your world turned upside down and hopes for your child altered by a diagnosis.

Rachel continued to talk about how they immediately began learning what they could do to help Leah, and she of course promoted how sign language is a means of communicating with any pre-verbal child (a discussion from me for another time). She shared some great stories about Leah’s growth and abilities. In fact, she and her husband were feeling pretty comfortable with everything and actually would not have minded having another deaf child.

That wasn’t in their plan, however. Instead, Lucy was born with spina bifida and at 9 months was also diagnosed with cerebral palsy. Again, they were devastated, until they realized that as with Leah, they needed to find out all they could learn and do for Lucy. The doctors’ prognoses were even more limited for Lucy, and they said that she would never be able to communicate, even with sign language, because she lacked the motor skills in her hands. It seems so unlikely and unfair that a family would have to deal with such major challenges for more than one child. But amazingly, Leah’s disability was a blessing: Lucy had been born into a family where sign language flourished and where her parents were already aware of how to help their child reach her potential. Now nine years old, Lucy can sign and talk, and as a family they do all kinds of things kids like that “shouldn’t” or don’t do, like run half marathons and hike through Yellowstone Park. Responding to the expectations of the doctors of both her children, Rachel says, “Who is to say what her experience is? We only limit it by our expectations.”

In sharing Rachel’s story, I hope to provide hope and determination for those I know and blog with that have children with special needs. I think we tend to associate a negative stigma when we hear the term "special needs," but it just means extra attention, and a lot of our children fit into that category. Even heart babies who have successful surgeries have developmental delays and need additional attention. I don’t “have” a child with a disability, but listening to the talk, I felt that if Merideth were here, it would give me a renewed sense of empowerment to do all I could for her to make her life as fulfilling as possible. In listening to Rachel speak, I was also reminded that we all have our separate challenges. I don’t wish for hers, and despite the exhaustion she must feel, I am sure she does not wish for my seemingly more simplified life with my challenges. As she concluded in her talk, she pointed out that we can’t always change our situation, but we do have control over our attitude: “Your circumstances can have you, or you [simply] can have circumstances.”

Rachel ended the keynote address by singing “Caterpillar Dreams” (see volume 8: “The Great Outdoors” DVD / signingtime.com). I don’t know all the words, so I’ll just summarize and say that it’s about a caterpillar who sees beautiful butterflies all around and knows that she has that potential, even though right now she is stuck on the ground. I always liked the song, but I always thought it was for Leah until in just the last few weeks I learned about Lucy, who is also in the Signing Time videos, not as a “character,” but in the songs and kid shots. When Rachel said that’s the song she was going to conclude with, I got out my tissues because I knew it would make me cry.

I’ll sum up (more) quickly here. I felt inspired and like I had gained some epiphanies from listening to Rachel speak. The other workshops in the morning presented by social service and medical personnel on the subject of meeting the needs of children were fine, but in my mind I kept going back to the things Rachel talked about. After the workshops were done, I returned in the afternoon with Natalie for a Signing Time concert. Natalie and I do lots of fun stuff together, but this was like a special outing for the two of us. I knew she would love singing along with the songs and seeing Rachel in real life (she was disappointed Alex and Leah were not there). It was a lot of fun to see her pure happiness in being there. In one of Rachel’s songs about family she sings, “Your family’s made for you and mine is made for me.” As I rocked Natalie at bedtime and we talked about her fun day, I felt such gratitude for the connection I had felt with both of my girls that day and happiness that this is the family that is made for me.