Linda Morris: Cleft Rebel

At first glance, Linda Morris may look like a mild-mannered school speech therapist. But she is not. This woman is a firebrand; a cleft warrior, rebel, and healer all at once. And she is also a proud member of Smile Train’s Cleft Community Advisory Council (CCAC). She shares her extraordinary journey with us below.

My cleft came as a shock to my parents. Then my brother, John, was born with a cleft when I was two-and-a-half, and that was an even bigger surprise because his was even more severe. This was 1964. Our parents didn’t have any knowledge about clefts and they never had much money, but they did everything they could to make sure we had every treatment the doctors said we needed. Except for one: genetic testing.

Our mother did some research and discovered that she had also been born with a cleft, but no one ever told her. I think it was too overwhelming for her to think that she might have given this to us, so she never checked her genes to find out.

No one on the team knew what to do with my brother. We were in Houston, which, then as now, has excellent cleft teams, but the doctors were still tearing themselves apart trying to decide what to do. And meanwhile, he’s three years old and his palate was still wide open, so he’s still having trouble eating and speaking.

Around then, our doctor told my parents the American Cleft Lip and Palate Association convention was coming to town and a lot of the doctors wanted to look at us. So, we went into the conference room, and they stood John and me up on the great table and we just walked around it while everybody looked in our mouths.

A team from the Lancaster Cleft Palate Clinic in Lancaster, PA, saw us and said they knew exactly what to do to heal John, but they couldn’t do it with us in Texas. We would have to move. So, my parents said okay and uprooted everything: They quit their jobs, sold the only house they ever owned, and loaded up the car — because that's the kind of people they were.

We got what we came for. John had his cleft closed at age seven and immediately began speech therapy.

We know how blessed we were. A lot of people our age and even younger do not have the quality of cleft treatments that we did, and we know we owe it all to our parents. They literally left this earth with $100 in their bank account.

Selective Hearing

They were saints in other ways, too. I was not the optimal good kid. John was a good kid. I did things I don’t tell my students about because I don’t want to give them any ideas. We gave the nurses a run for their money sometimes.

Maybe we were taking out what happened to us in school. John and I didn’t know any other kids with clefts there, and they tormented us. He got into a couple of physical fights defending us both, but I was the one who actually got into the most trouble. At first I internalized the things they said to me, but then I decided I was done with that and began fighting back in my own way, with my mouth — the very thing they were teasing me for. I used colorful language. Thank you to my father for being in the Navy and teaching me everything he learned; I used them all appropriately and in just the right context.

I say John got the worse cleft but I got the worse ears. I’ve been seeing audiologists and wearing hearing aids my whole life, and I just had another ear surgery a few months ago. Growing up, I used it to my benefit. If the teacher was saying something I didn’t want to hear, or if I was in math class, my hearing aids were immediately shut off. But if I wanted to listen to somebody talking about stuff I probably had no business hearing to begin with? Oh yeah, they came on.

Probably the worst thing I did was when I was about six. We were driving down the freeway in Houston on the way to treatment and my parents were talking about something, and I just got tired of hearing whatever my mom was telling me. The car windows were down, so I just took those hearing aids out and threw them out the window!

We got to where we were going, and my Dad's like, “Where are your hearing aids?”

“Oh, they went WHOOSH, out the car window.”

He said, “Why did you do that?”

I said because I didn't want to hear a [darn] word anybody said and I wanted to have a nice day.

I think my [behind] still hurts from that one.

Thankfully, the State of Texas paid for another set. And because I worked for 20 years as a speech therapist in Texas public schools, I think I’ve paid for them. My slate is clean.

Busted

I fell in love with helping other children with speech and craniofacial differences while working as a teacher’s assistant in high school. When I got to college, I knew I wanted to be a speech-language pathologist, but as a cleft-affected person, it wasn’t easy.

For one thing, people don’t want to go to a speech pathologist with speech as hypernasal as mine was. For another, I was in and out of hearing aids in college because I didn’t have any money and back then, you were kicked off your parents’ insurance when you turned 18.

Thankfully, I can read lips with 98% accuracy, so I did a lot of lip reading to make it through class… until my audiology professor busted me.

He offered me a deal. He said, “I have some very cocky graduate students who need to get set straight and I have a feeling that you know how to fake a hearing test. Help me put them in their place and I’ll give you a free hearing test.”

I said, “Oh yeah, I know how to fake one!”

So, I went to his clinic with him and, at the end of my test, the students told me I had perfect hearing.

I said, “Really? Huh. The last time I had perfect hearing was in utero.”

My professor had been over in the corner peeing his pants he was laughing so hard. But at that point, he called them over and showed them everything they were doing wrong. They were not even covering their mouths while they spoke with me; they didn’t realize I was just reading their lips the whole time — and, anyway, I had done that same test so many times I had it memorized.

It was great and, surely, they all hated me. And now with my own students, I get to use my evil for good instead of bad.

What Every Cleft-Affected Family Should Know

As a speech therapist and someone with a cleft, I need to plug how important it is for every child with a cleft to have a full team. Cleft-related hearing issues are almost always preventable with early treatment. The issue is, oftentimes, parents are, understandably, so focused on speech, surgeries, appointments,and making sure that their child is not bullied that they forget about hearing. Plus, kids like us are very good at masking things like hearing problems because we don't want anything else to be “wrong” with us.

That’s one reason I’m so proud to be involved with Smile Train and the CCAC. I first learned about Smile Train from the movie “Smile Pinki.” It mesmerized me, and I knew immediately that this was an organization I wanted to be a part of. The way Smile Train builds cleft teams all around the world to make the full range of cleft care available all the time to everyone who needs it, just like my brother and I had, is so important.

I’ve been especially impressed with how Smile Train handles resources for speech. There are so many great resources on their website for families that have questions about their child’s speech and activities parents can do with their kids between therapy treatments.

We all have our own stories, but almost everyone with a cleft knows what it feels like to grow up with people constantly commenting on your looks and with doctors’ appointments and surgeries all the time.

The thing I love most about Smile Train is how they are connecting people with clefts across the country into a strong community through the CCAC. Being a member has allowed me to build relationships with people that I would have never met otherwise — and work with them to educate and advocate for our community. Recently, I've been working with another member on putting together a nationwide database of cleft service providers, insurance, all of it. Wouldn’t we all like to have had that?

Advice from My Mother, Inspiration from My Brother

If you take anything from my story, let it be this piece of advice my mother always used to give to John and me: A cleft is not the worst thing that can happen to you. You can deal with it and move on to do anything.

My brother, John, is the perfect example. Many people thought he’d never be able to speak clearly because his palate was open until he turned seven, but now he’s a professional musician. He played trombone in high school — just imagine doing that only a few years after getting a roof to your mouth! He got music performance scholarships, and now he sings and plays several instruments. He says he doesn’t even think much about his cleft anymore, and why should he? It doesn’t hinder him professionally.

So no, clefts aren’t fun, but it will get better. Have faith in your teams!

Your cleft is part of you, but you define how it affects you, not the other way around. Take that power and use it for some good.