Championing Charlie
It was around April 2017 I made "the decision" to step away from my calling and passion, teaching along with educational leadership, putting my family first. It had been a particularly difficult winter. Both kids had been sick, Charlie had undergone two rounds of genetic testing. The first, Fragile X and Angelman Syndrome. The second was a broad panel for congenital myopathies and dystrophies. These tests identified something called a "variant of uncertain significance" or VUS. Our family was was cracking under the pressure to keep it all together, trying to balance caregiving, advocacy and therapy.
We had been participating in Early Intervention since Charlie was about 9 months old with occupational and physical therapies. These therapies had been put in place after Charlie's challenges with growth and development during the first year of his life. We had been working with our "village" but Charlie continued to struggle to meet basic developmental milestones like sitting, playing and speaking.
Of course there was the whole feeding issue. I would feed him but the food just wouldn't stay in his mouth. It would run out, down his chin never reaching his skinny belly. So I used all kinds of baby cereals to thicken everything and add calories, but if too thick, he'd gag pushing it all out with his tongue. To help during feeding we were given a special chair with a butterfly harness to keep Charlie's upper body in a safe position. Additionally, the lateral head supports kept Charlie from tilting his head unsafely to the side. This is particularly unsafe during feeding as Charlie's low tone (hypotonia) causes him to inefficiently eat leaving residual food in his mouth. Residual food is the greatest threat to Charlie as it is a serious choking hazard and he is unaware of it due to his low oral awareness.
To complicate things, up until the age of two Charlie was showing signs of serious anemia. His iron levels were very low. His pediatrician prescribed oral iron as a supplement with the dosage of 6 mL a day. This is a very high dosage causing Charlie's teeth to become stained black. In fact, it was difficult to obtain the oral version because iron overdosing is one of the leading causes of infant death. Furthermore, an adverse side effect of iron is constipation, something with which we were already struggling.
Between the inability to maintain nutritional gains, or meet developmental milestones, combined with his chronic constipation from the iron, we were referred for speech and feeding evaluation. The result was a battery of diagnoses including mixed expressive receptive language disorder (MERLD) and oral motor dysphagia. In layman's terms, a communication and feeding disorder.
Feeding disorders are fickle with no two exactly the same. Even children with identical diagnoses will exhibit entirely unique indicators if struggling to swallow or presenting with a food/ sensory aversion. Charlie has a feeding disorder called "oral motor dysphasia." According to Cincinnati Children's Hospital Medical Center, "Oral dysphagia refers to problems with using the mouth, lips and tongue to control food or liquid." And, "[d]ysphagia may lead to aspiration (where food or liquid gets into the lungs). Dysphagia can affect a person at any age, from infants to the elderly."
We are the among the lucky ones. Charlie can consume food orally. He doesn't have a feeding tube. We know through our participation in a swallow study, that Charlie is not a child that aspirates while eating. Charlie is a child that likes to eat, he doesn't have food aversions. Simply put, he is just not very good at eating. His mouth and tongue are ineffective at moving food around his mouth and maintaining a bolus. Britannica defines a bolus as, " food that has been chewed and mixed in the mouth with saliva." Charlie mashes his food, he doesn't masticate it. Consequently, Charlie consumes a primarily mashed diet. As a result Charlie was, and is, known for erratic sleeping hours and seriously low motility, or chronic constipation.
Championing Charlie was, and is, a full time job. It is more than donning my "chef hat" to make some baby food or practice eating. I've always believed that he was inside that sweet little body. He was trapped trying to get out, trying to communicate and thrive. One day I woke realizing my educational trailblazing days were done. All my experience would now be put into showing everyone the Charlie I saw. I began to "Champion Charlie" with the same burning passion that I had gone to teach my students.
I stepped out of my classroom and into what I believed would be a temporary leave. I began using my skills as a team leader and educational advocate to facilitate the ongoing conversation between our team of therapists. I created my own unspoken protocols for ensuring that Charlie's needs were met. I communicated with all team members on a monthly basis. I updated each team member on the therapies that had taken place that week and any changes I had noted in Charlie. I facilitated personal relationships with his therapists, many of whom have been key influences along the way.
To this day I maintain this practice. I have added a few modifications, or upgrades, along the way. Like many moms today, I start the year with a picture of my Charlie on an informational flyer. It details the specifics of Charlie's many diagnoses that contribute to his inability to get around, communicate his wants and needs or eat independently. It highlights some strengths and areas of continued growth. Most importantly it communicates directly and indirectly with school personnel.
Charlie began school in August 2018 at the age of 3. It was very early in the school year that I realized my prior communication protocol was going to need an upgrade. Don't get me wrong, his school is AMAZING. Schools cannot meet the needs of the children they serve without the involvement of the parents. We are the only ones that can ensure that everyone knows exactly how to care for our children. I am the one that knows Charlie best. The school doesn't set that standard, I do. I am his advocate!
So I got to work, training the school personnel on "everything Charlie" from how to: engage him, use his adaptive activity and feeding seat, including properly placing and removing him from his wheelchair. Similar to feeding disorders, speciality equipment is unique, each with its own set of tricks and nuances. None of the features are consistent across manufactures so you have to learn by doing.
Upgrade one, each piece of specialized equipment has its own quick reference guide on how to use it. The guides contain QR codes, upgrade two, that link to a private playlist on YouTube. This shows, not tells, personnel how to use each piece of Charlie's medical equipment. These quick reference guides hang from the back of his activity/ feeding seat and wheelchair. Anyone with a phone can scan the code and watch a video. Some videos include how to transfer him to his wheelchair and then to the bus for transport to school. Others include explanations for the many knobs and harness that don and dangle from each piece of equipment.
In a typical day, there are many people that help Charlie access his school and community. These aren't the members of the IEP team that sit at the table during meetings. These are school aides, substitutes, school nurses and bus drivers. All well intentioned individuals that need training on how to use his equipment. In championing a cause you have to build the capacity of everyone surrounding.
I believe in building relationships and villages through praise and gratitude combined with hard work. Everyone intends to bring their best self to the team everyday but at times we can all struggle, slip or fall. We need dialogue lined with trust to support one another through challenging times. I need this most of all. When I make a mistake, I need to know that our expanded team feels that they can approach me. Usually the mistakes I make are of a safety concern and the result of fatigue. From the bus driver to his one-on-one aide, each person must feel that they can speak with me honestly and candidly to ensure Charlie's safety.
I am humbled on a daily basis by the love and kindness of Charlie's school team. They work so hard to engage him through social and play based learning. They LOVE him! We are so lucky to have so many talented individuals in our village. Working together we are creating a new dialogue in our community. It is together WE are "championing Charlie" because they see the same sweet boy trapped inside that I do.
We had been participating in Early Intervention since Charlie was about 9 months old with occupational and physical therapies. These therapies had been put in place after Charlie's challenges with growth and development during the first year of his life. We had been working with our "village" but Charlie continued to struggle to meet basic developmental milestones like sitting, playing and speaking. Of course there was the whole feeding issue. I would feed him but the food just wouldn't stay in his mouth. It would run out, down his chin never reaching his skinny belly. So I used all kinds of baby cereals to thicken everything and add calories, but if too thick, he'd gag pushing it all out with his tongue. To help during feeding we were given a special chair with a butterfly harness to keep Charlie's upper body in a safe position. Additionally, the lateral head supports kept Charlie from tilting his head unsafely to the side. This is particularly unsafe during feeding as Charlie's low tone (hypotonia) causes him to inefficiently eat leaving residual food in his mouth. Residual food is the greatest threat to Charlie as it is a serious choking hazard and he is unaware of it due to his low oral awareness.
To complicate things, up until the age of two Charlie was showing signs of serious anemia. His iron levels were very low. His pediatrician prescribed oral iron as a supplement with the dosage of 6 mL a day. This is a very high dosage causing Charlie's teeth to become stained black. In fact, it was difficult to obtain the oral version because iron overdosing is one of the leading causes of infant death. Furthermore, an adverse side effect of iron is constipation, something with which we were already struggling. Between the inability to maintain nutritional gains, or meet developmental milestones, combined with his chronic constipation from the iron, we were referred for speech and feeding evaluation. The result was a battery of diagnoses including mixed expressive receptive language disorder (MERLD) and oral motor dysphagia. In layman's terms, a communication and feeding disorder.
Feeding disorders are fickle with no two exactly the same. Even children with identical diagnoses will exhibit entirely unique indicators if struggling to swallow or presenting with a food/ sensory aversion. Charlie has a feeding disorder called "oral motor dysphasia." According to Cincinnati Children's Hospital Medical Center, "Oral dysphagia refers to problems with using the mouth, lips and tongue to control food or liquid." And, "[d]ysphagia may lead to aspiration (where food or liquid gets into the lungs). Dysphagia can affect a person at any age, from infants to the elderly."
We are the among the lucky ones. Charlie can consume food orally. He doesn't have a feeding tube. We know through our participation in a swallow study, that Charlie is not a child that aspirates while eating. Charlie is a child that likes to eat, he doesn't have food aversions. Simply put, he is just not very good at eating. His mouth and tongue are ineffective at moving food around his mouth and maintaining a bolus. Britannica defines a bolus as, " food that has been chewed and mixed in the mouth with saliva." Charlie mashes his food, he doesn't masticate it. Consequently, Charlie consumes a primarily mashed diet. As a result Charlie was, and is, known for erratic sleeping hours and seriously low motility, or chronic constipation.
Championing Charlie was, and is, a full time job. It is more than donning my "chef hat" to make some baby food or practice eating. I've always believed that he was inside that sweet little body. He was trapped trying to get out, trying to communicate and thrive. One day I woke realizing my educational trailblazing days were done. All my experience would now be put into showing everyone the Charlie I saw. I began to "Champion Charlie" with the same burning passion that I had gone to teach my students.
I stepped out of my classroom and into what I believed would be a temporary leave. I began using my skills as a team leader and educational advocate to facilitate the ongoing conversation between our team of therapists. I created my own unspoken protocols for ensuring that Charlie's needs were met. I communicated with all team members on a monthly basis. I updated each team member on the therapies that had taken place that week and any changes I had noted in Charlie. I facilitated personal relationships with his therapists, many of whom have been key influences along the way.
To this day I maintain this practice. I have added a few modifications, or upgrades, along the way. Like many moms today, I start the year with a picture of my Charlie on an informational flyer. It details the specifics of Charlie's many diagnoses that contribute to his inability to get around, communicate his wants and needs or eat independently. It highlights some strengths and areas of continued growth. Most importantly it communicates directly and indirectly with school personnel.
Charlie began school in August 2018 at the age of 3. It was very early in the school year that I realized my prior communication protocol was going to need an upgrade. Don't get me wrong, his school is AMAZING. Schools cannot meet the needs of the children they serve without the involvement of the parents. We are the only ones that can ensure that everyone knows exactly how to care for our children. I am the one that knows Charlie best. The school doesn't set that standard, I do. I am his advocate!
So I got to work, training the school personnel on "everything Charlie" from how to: engage him, use his adaptive activity and feeding seat, including properly placing and removing him from his wheelchair. Similar to feeding disorders, speciality equipment is unique, each with its own set of tricks and nuances. None of the features are consistent across manufactures so you have to learn by doing.
Upgrade one, each piece of specialized equipment has its own quick reference guide on how to use it. The guides contain QR codes, upgrade two, that link to a private playlist on YouTube. This shows, not tells, personnel how to use each piece of Charlie's medical equipment. These quick reference guides hang from the back of his activity/ feeding seat and wheelchair. Anyone with a phone can scan the code and watch a video. Some videos include how to transfer him to his wheelchair and then to the bus for transport to school. Others include explanations for the many knobs and harness that don and dangle from each piece of equipment.
In a typical day, there are many people that help Charlie access his school and community. These aren't the members of the IEP team that sit at the table during meetings. These are school aides, substitutes, school nurses and bus drivers. All well intentioned individuals that need training on how to use his equipment. In championing a cause you have to build the capacity of everyone surrounding.
I believe in building relationships and villages through praise and gratitude combined with hard work. Everyone intends to bring their best self to the team everyday but at times we can all struggle, slip or fall. We need dialogue lined with trust to support one another through challenging times. I need this most of all. When I make a mistake, I need to know that our expanded team feels that they can approach me. Usually the mistakes I make are of a safety concern and the result of fatigue. From the bus driver to his one-on-one aide, each person must feel that they can speak with me honestly and candidly to ensure Charlie's safety.
I am humbled on a daily basis by the love and kindness of Charlie's school team. They work so hard to engage him through social and play based learning. They LOVE him! We are so lucky to have so many talented individuals in our village. Working together we are creating a new dialogue in our community. It is together WE are "championing Charlie" because they see the same sweet boy trapped inside that I do.
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