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Winter 2000 Table of Contents
Versión Español de este artículo (Spanish Version)

Bonfire of Love

By Ronnie Wells, Parent, Nevada, Texas

This seemed to me to be the greatest news of all. I could not wait to get to the nearest phone and call my husband to tell him, "No more bandanas!"

My son Austin is an adorable thirteen-year-old, who has an unfortunate problem ... drooling. Cerebral palsy has a lot to do with his inability to swallow. I can't even begin to express the social bummer this can be.

I could not understand why people just would not look past a little drool. Well...okay, maybe a lot of drool. Maybe even sometimes it hung from his lower lip like a long spider web. Sometimes it was mixed with food. Often there was a wide wet spot on his shirt just below his chin. During the winter, we had even seen this area freeze! Not a pleasant situation. This has been a difficult obstacle to overcome for Austin.

Among other obvious things, we heard, "Your child needs to use a wheelchair to get around." Well okay, we can deal with that. Then we heard, "Your child is not going to be able to read normal sized print, drive a car, or develop at the same rate as his peers, or eat, sit, walk or talk, and all that other stuff, at the same rate as his peers." But in time, we learned to deal with all of that, too. Austin is fortunate in many ways because the other children seemed to be able to deal with all that stuff also. We've learned to deal with everything but "the drool".

So, I decided to buy colored bandanas to coordinate with all his clothes. Maybe this would help. My husband and I became very selective when purchasing clothes for Austin. We would give it "the drool test". We'd hide behind a rack of clothes in the store, and using a spray bottle from my purse, we would add a few drops of moisture to the garment --- a quick check to see how the garment might look after being worn by Austin for a few moments. White and black thin cotton always worked best. Still, Austin was asked a million times a day to swallow. "Wipe your chin Austin!" " Ooh, Austin you're drooling...gross!" His friends at school took it upon themselves to be the drool cops. Some would go as far as to wipe his chin for him. Others just exclaimed their disgust at his seeming lack of concern. The color-coordinated bandanas didn't seem to make a difference, even the Nike bandanas, the Tommy Hilfiger or Reebok. None of these sports icons seemed to help matters.

I became bitter. The younger children seemed to be more accepting of Austin's problem. I knew that as he got older and moved up in school, this would become more of a social barrier than it had been at a younger age.

So, there it began. I was on a mission, a journey, not only in the physical sense but on a spiritual quest as well. I prayed. I read. I took many long walks in the pasture. I attempted to make a deal with God. Some people might say at this point, "She's over the top." But I soon realized that I had trusted Him with so many other aspects of my life, but not this. I cried, "Lord, this is a mountain that I cannot move. Please help!" Soon He did just that.

Our family moved to another city in the summer of '96. Austin was going to attend another school. This was a good thing. This also meant that I would have the opportunity to find a new team of doctors. Also, there was the hope of new horizons and fresh ideas from this change of venue.

We were referred to the Scottish Rite Hospital in Dallas, and we made an appointment with a neurologist. "What can we do about the drooling?" I asked. The doctor seemed to have a lot of experience with preadolescent children with cerebral palsy and to appreciate our concerns. After the usual barrage of questions and answers, we were handed a prescription of Artane. We were assured this may help with the drooling and sent on our way. I was thrilled. Why had I not heard of this before? I was so grateful and gave many thanks to God.

Soon after we started on the Artane, I did notice some improvement. I was very hopeful that this would make a difference for Austin. He started at a new school. The children seemed to love him right away. Even though the Artane helped somewhat, the side effects had us concerned: delayed urination, the feeling of "having to go and not being able to" became a problem. We also noticed that great care had to be taken when our son was exposed to the heat or sun for long periods of a time. He seemed to overheat even on balmy days. His face would become red and blotchy. Ultimately, the side effects continued and so did the drooling.

The summer of '98, I traveled to San Antonio to attend a seminar for doctors, therapists and healthcare providers. One of the topics was prevention and therapy for people who drool. I spoke to a neurologist there about Austin and our family. I shared where we were in our treatment, and what Austin was experiencing. He discussed the importance of oral simulation with different objects and how speech therapy, posture and cognitive awareness played a big part in oral control. He thought we should try another drug therapy called Robinol.

I immediately made an appointment to see our neurologist at Scottish Rite Hospital. With notes in hand and much optimism, I shared what I had learned at the seminar. The doctor was familiar with Robinol and discussed the side effects of this drug. We agreed to try it and see what happened. The new drug seemed to help at first and the drooling did appear to slow down. However, side effects were still a problem: overheating, difficulty urinating, fatigue.

Austin was in middle school by now. The children were less accepting of the drooling and his eating habits. "Yeah, Austin is a pretty cool kid most of the time; but does he drool because he's retarded?" Austin continued to develop a strong self-image despite all this.

It broke my heart to see this happen. Friendships were being strained at best, and in some instances, friendships lost. I continued searching for "the answer". I searched the Internet. I frequented seminars. I grilled other parents in similar situations. Often I heard, "Let me know what you find; keep us informed. Good luck." I was constantly reminded of the desperation shared by numerous parents in similar circumstances. I prayed to God to please have mercy; please either open a door or give me a heart of acceptance.

Late in the fall of 1998, I was talking to a friend about the Scottish Rite Hospital. She asked me if I had been to the Rainbow Clinic there? She had heard about a group of specialists who were preparing to do a clinical study on kids who cannot control saliva flow. I made an appointment.

Initially we were referred to the Scottish Rite dental clinic. Everyone was extremely caring and supportive. They told me that Austin might be a candidate for a new device that could help in controlling the saliva flow. This, I felt, was probably too good to be true. But we would try anything at this point. After a brief screening process, it was determined that Austin was indeed a candidate for this mouth appliance. We were cautiously optimistic.

An impression was taken of his bite. We learned that the appliance would fit somewhat like upper braces, and that it had a small bead attached to the back to stimulate a swallowing reflex. If it did not cause a gag reflex in Austin, this could be what we had been looking for.

We returned to the clinic weeks later to try out the mouth appliance. The moment of truth! The doctor inserted the tiny plastic and wire device, and to our relief, Austin had a minimal gag response. Moments later the doctor and I noticed he was swallowing. The drooling stopped almost immediately. I had never seen my son swallow without being told to do so. I still find myself staring from time to time in total amazement. The irony of all this is I thought I had looked everywhere for the answer, and here it was in my own backyard.

It has been about a month since Austin received his retainer. I had lunch with him at school a few days ago and was delighted to see some new and curious kids hanging around.

Today the school bus arrived to pick Austin up for school. I was scurrying about gathering all his school stuff. As he was headed out the door in his chair I quickly yelled, "Wait Austin, you forgot your bandanas." With a full grin from ear to ear he said, "Mom, I don't need 'em anymore."

I want to share this story with as many people as I possibly can. The happiness on my son's face when he said, "I don't drool anymore" could absolutely launch a thousand rockets to the moon. No words can express how this has made me feel, but more importantly, what this has done for Austin. God knows...He had his merciful hands all over this, and I am truly thankful.

I am also deeply grateful to the team of specialists at the Scottish Rite Hospital. Because of their countless hours of dedicated service to the children and their parents, this unforgettable opportunity is now available to many people in need.

We are going camping this Thanksgiving, and we are going to have a big campfire. Austin and I agreed we should toss those bandanas into the fire. We laughed and laughed. Austin said, "Nah...maybe Ellie the dog will want to wear them."

Never lose sight of what you want. God bless you all. If you would like to contact us personally, we can be reached in the following ways:

The Wells Family: Patrick, Ronnie, Austin, Dylan, and Ellie the Dog
5388 Hwy 78
Nevada, Texas 75173
Phone: (972) 843-3032
E-mail: northfork@onramp.net 


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