Kaden was born with a lymphatic malformation, the medical term for an abnormal growth of lymph vessels in his head and neck. His enlarged tongue makes it difficult to get to all the areas a toothbrush should effectively reach. Due to this condition, Kaden’s mother and his nurses use Toothette swabs in conjunction with a squirt bottle to clear out his mouth six times each day.

“We can’t get to his teeth really well because the tongue just kind of fills the whole space,” mom Kimberlee Lee said. “We realized we can’t leave food in his mouth at all, ever. He gets food stuck on the roof of his mouth because he can’t move his tongue around.”

Dental care for Kaden’s sister, Joslynn Lee, also requires a degree of finesse and patience. A rare genetic disorder caused strokes that left 7-year-old Joslynn autistic and developmentally delayed with behaviors more aligned with a 3-year-old child. She bites, squirms and resists whenever it’s time to brush her teeth.

Kimberlee says Joslynn responds better when she can watch her reflection in the mirror. And their routine involves music; Kimberlee sings a special toothbrushing song to both distract and calm her wiggly daughter. Singing also helps Joslynn make a connection to the purpose of the toothbrush.       

February is National Children’s Dental Health Month, an occasion to promote awareness of the importance of oral health to overall health. This includes the best oral care practices at home and while at the dentist office. Routine dentistry can be challenging for many children, and even more so for children like Joslynn and Kaden who face extra medical hurdles.

The various sensations that even a routine dental procedure entails – sounds, tastes, tickly tools and bright lights – can be overwhelming for a child with developmental or mental disorders. Patients with autism might need additional patience and care to mediate the sheer amount of sensory immersion they are experiencing all at once. Or a patient with muscular dystrophy might need specialized tools to keep her mouth open during the treatment. Or a patient with epilepsy might have chipped front teeth because of his seizures.

“Patients who have mental, developmental or physical disabilities have a harder time with communication or have difficulty cooperating for oral health practices at home. This all leads to a higher risk of dental problems,” according to Sheela Patel, D.D.S., a pediatric dentist at the Cook Children’s Renaissance Neighborhood Clinic.

“We often encounter families who put off seeing a dentist because they are fearful their child may not be able to cooperate. But it is very important -- especially for the special needs population -- for children to visit the dentist early on so prevention strategies can be created in order to address oral health issues before they cause pain or even infections,” she added.

Dr. Patel and Shawne Barron, D.D.S., M.S., both practice at the Cook Children’s Renaissance location, the only Cook Children’s neighborhood clinic that offers dentistry services in addition to general pediatric care. Dr. Patel estimates that out of the more than 50 patients treated in the dental clinic each day, typically 20%-30% of those patients have underlying medical conditions or special health care needs. The Lee family makes the drive from their home in Justin for dental services at Cook Children’s Renaissance Dental Clinic in Fort Worth.

The American Academy of Pediatric Dentistry (AAPD) reports that children with special needs tend to run a higher risk for tartar buildup, cavities, gum disease, overcrowding and tooth fractures. The AAPD cites various reasons to explain why these children often face a greater likelihood of oral health problems. Examples of complications include behavioral issues (attention deficit hyperactivity disorder, for instance); intellectual disabilities; and facial birth defects such as cleft lip or cleft palate.

“The more severe their health conditions, the more likely they are to have unmet dental needs,” according to the AAPD.

But the experts at Cook Children’s have some advice regarding strategies to ensure healthy oral care and treatment: Go to a pediatric dentist.  Communicate your child’s likes and dislikes to the clinic staff. Establish a daily brushing routine that fits your child’s needs and sensitivities. The guidance and encouragement can ultimately help keep every child’s smile as healthy as it can be.    

Children should make their first trip to the dentist between 6 months and 1 year of age, said Tonya Fuqua, D.D.S., director of Child Oral Health at the Center for Children’s Health, led by Cook Children’s. The first visit lays the foundation for a good relationship with the dentist and for healthy dental practices at home.

“I can’t tell you how to best help your child unless I meet them, I see them, I ask you questions and learn about your child and their special needs,” Dr. Fuqua said. “We as dentists want to help make toothbrushing the least invasive part of the day. We can give tips and tricks to help support a good dental routine at home with different gadgets, tools and ideas. There’s so much to offer, but a parent won’t know unless they take their child to the dentist and start early.”

 She calls the initial appointment the “happy visit” – a chance for the patient to meet the clinic staff, explore the surroundings, and maybe ride up and down in the exam chair. “The first visit should establish a positive experience for that child so that each time they come back they know that this is a safe and possibly fun place to go,” Dr. Fuqua said.

 To acquaint her patients with a few common dental items, Dr. Fuqua might send them home with mouth mirrors, gloves and masks, encouraging the family to play “going to the dentist.” Create a pretend scenario looking into each other’s mouths and using a flashlight to mimic the dental light on the swing arm above the dental chair. Having that play experience can help decrease anxiety when it’s time for an actual cleaning or checkup, she said.  

 Parents of children with special needs should be sure to update the dentist each time their child’s medication and health history change. The office will need to know any accommodations that might help the appointment go smoother, such as headphones or dimmed lighting. Dr. Fuqua recalled a patient with autism who requested a Taylor Swift playlist. “It made a huge difference,” she said.

Dr. Fuqua welcomes any favorite toy or blanket that helps soothe a child in the dentist chair. Parents may also hold their child’s hand and give words of reassurance during the dental procedures. “You have to find what makes them tick, what makes them engaged and smile, what makes that child happy,” she said.

 Alert the staff to any aversions, such as loud noises or a crowded room that could be upsetting. “You know your child best. Let the dentist know those things that trigger your child to get nervous or worked up, in order to help us know what to avoid.”

 Modifications and role playing at home can help a child with special needs warm up to going to the dentist and receiving dental care. For those with extreme sensitivity to taste and touch, Dr. Fuqua recommends limiting the stimulation. Start with a small toothbrush without toothpaste. Eventually, you can apply the toothpaste when the child is ready. Let the child brush a stuffed animal’s mouth. Read books and watch animated videos. All of these steps can start the process of making oral hygiene both fun and familiar.

 For children with dexterity impairments, a tool can be created by inserting a toothbrush into a tennis ball, making it easier to grasp. This modification not only teaches a level of independence, but also gives those children the confidence that they are capable of doing it on their own. 

 Dr. Patel and Dr. Fuqua understand that families juggling with stress and time constraints. possibly due to their child’s health challenges, might be tempted to make dental care a low priority. “It’s definitely one of those things that parents let slide because it’s just one more thing to deal with,” Dr. Fuqua said. The intense combination of medications and frequent doctor visits for the underlying health condition can be overwhelming. Even with these struggles. families should aim for brushing teeth at least two times a day (morning and before bed). Oral health impacts overall health, so it’s not something to ignore.

 The two dentists at Cook Children’s Renaissance Dental Clinic stay busy but are always accepting new patients. The clinic has seen an annual average of 5,434 dental patient visits since 2019. Depending on the medical issues, the safest way to perform dental procedures for some children is under anesthesia in the operating room. Annual dental surgeries at Cook Children’s averaged almost 1,100 in the past three years.

 Dr. Patel recommends finding a pediatric dentist who is comfortable with your child’s unique and individual needs, and can speak at his or her cognitive level. She attributes the resistant behaviors in some patients to a lack of understanding or an inability to express themselves. For a patient who is nonverbal like Joslynn Lee, the care must be extremely customized.

Kimberlee Lee says her daughter has a sensory processing disorder along with her autism. Joslynn’s desire for control makes brushing her teeth a battle. She won’t allow flossing or pulling a loose tooth.

During a dental appointment, Joslynn doesn’t understand why she has to sit still and can’t bite. As a result, she must be sedated for cleanings or other dental work, Kimberlee said.

At home, keeping little brother Kaden’s teeth clean involves the team of nurses who tend to his tracheotomy and restricted airway. The nurses collaborate with Kimberlee to sponge off his teeth and gums every time he eats. 

Unfortunately, a medication Kaden takes to control his lymphatic malformation makes him prone to mouth sores and tooth decay. At just 4 years old, Kaden has already needed several extractions and caps due to the damage to his enamel. Through all of this, he maintains high spirits at the dental office.  

“He loves the attention,” Kimberlee said. “So for the most part, he really is very cooperative. He’s happy to open his mouth. He’s excited about the little bag with the toothbrush and the new toothpaste and all the little things inside and to get the stickers at the end of the appointment.”

For parents with children who have similar needs, Kimberlee shared a few points that help dental visits go smoother for her family:

Plan ahead and bring whatever makes your child relax. Kaden prefers the iPad, and Joslynn likes fidget toys to keep her hands busy.

Offer a reward afterward as encouragement.  

Stay calm and positive. “Check your own energy and be able to show up and love and comfort for your child rather than feeding on their fear,” Kimberlee said. “When you’re scared, it ends up making everything worse.”

 Kimberlee advises parents to do their best to implement dental care at home, and be OK if it isn’t perfect.  The key is progress, not perfection.

“In the beginning of having special needs kids, I always felt like if they got a cavity or something was wrong, that it was my fault that I haven’t been taking good care enough of their mouth,” Kimberlee said. “I’m just going to have some grace, and if we have a problem, we have Dr. Patel to help us through it.”

There is nothing more inspiring than seeing a child with a disability overcome the daily challenges they face. Their determination, strength and courage are what superheroes are made of. But, even superheroes sometimes need help carrying the mental and emotional weight of living with a difficult medical diagnosis, a developmental delay, a physical disability or a learning obstacle. It’s the part of their struggle often unseen, yet profoundly impactful to them, their families and their well-being.

Carla Morton, Ph.D., spends a lot of time with little superheroes. She is both a neuropsychologist at Cook Children’s Jane and John Justin Neurosciences Center and the mother of a child with special needs. Morton is also an advocate for children with disabilities as a founder and current president of the Fort Worth ISD Special Education PTA.

“Kids who receive special education services are at increased risk of psychiatric issues,” Dr. Morton said. “It could be the result of a primary medical diagnosis like multiple sclerosis, for example, which in and of itself causes you to be more likely to have depression. Or, it could come through an indirect route, like attention deficit and hyperactivity disorder (ADHD), which results in more social difficulties and an inability to regulate behavior.”

No matter the cause, depression is not something to ignore. It’s a risk factor for suicide.

Studies show that adolescents with physical, developmental and learning disabilities have an increased risk of suicide compared to those without a limitation. Contributing factors may include increased stress, social isolation, discrimination, a psychiatric diagnosis and substance abuse.

Take epilepsy, for example. It’s a disorder that can be associated with physical, developmental and learning impairment.

“Epilepsy and depression occur together at high rates,” said Crystal Cooper, Ph.D., principal investigator at Cook Children’s Jane and John Justin Neurosciences Center. “If you think about the general population, you might have 5 to 15% that are going to have depression in their lifetime. But if you look at those with a condition like epilepsy, their rate of depression can be up to 50%. So it's much higher compared to the general population. Given this knowledge, it is not surprising to hear the CDC report a 22% higher rate of suicide among those with epilepsy compared to the general population.”

In her role as a principal investigator, Dr. Cooper examines the relationship between neurological medical conditions and psychiatric health in order to better understand how to treat people with medical disorders of the brain. She is currently studying the impact of epilepsy on the psychological health of children.

It’s hard for a child with a physical disability to watch their friends do things their bodies won’t let them do. Constant questions from others about their limitations, burnout from intense therapies that interrupt time with their friends, and self-consciousness about their differences can erode a child’s mental health. Each of life’s developmental and social milestones they reach has the potential to present a new emotional challenge.

Depression and suicide can capture the thoughts of anyone with a limitation, even those with an intellectual and developmental disability. A review of literature by the National Institutes of Health indicates the rate of suicidal thoughts, behavior and completion among children with an intellectual disability are as high as 42%.

“Unfortunately this population has been understudied for their risk for suicide,” said Rachel Talbot, M.D., a child and adolescent psychiatrist on the medical staff at Cook Children’s Medical Center. “In general, I would say that this population is at an increased risk for depression and anxiety in addition to suicidality as they are more susceptible to the risk factors for suicide.”

Such risk factors can include having traumatic experiences—both physically and mentally—being bullied by peers, increased impulsivity, inadequate coping skills, and an inability to manage and appropriately express their feelings.

“We need to make sure that our kids with disabilities are being screened for anxiety and depression, including those with intellectual disability,” Dr. Talbot said. “We can’t overlook it.”

Impulsivity also puts children with ADHD at risk. They can quickly go from a suicidal thought to completion before anyone has a chance to intervene, according to Anne-Marie Hain, M.D., a pediatrician in the developmental pediatrics division of the Cook Children’s Child Study Center.

Superheroes Under Stress

This year has been particularly difficult for children with special needs and their families. The pandemic complicated already stressful lives and disrupted critical therapies that help these children reach their full superhero potential. Normal daily routines were in constant flux, triggering a loss of comfort and security for children in general but especially for those with special needs.

“Regular routine and ritual is important for any child,” Dr. Hain said. “But it's especially important for a child with a developmental disability. It allows them to understand what’s coming next, especially if there are communication issues.”

By nature of their disability, many struggle with anxiety, depression, isolation and a sense of loss on a good day. Add a pandemic on top of that and you have the makings of a perfect storm. Physicians at Cook Children’s Child Study Center, an educational haven for children with developmental disabilities, said they have seen an increase in the severity of their patients’ behavior disorders and aggression over the past year.

“At the beginning of the pandemic, a lot of children with developmental disabilities had a little bit of anxiety or a little bit of disruptive behavior or a little bit of weight problems,” Dr. Hain said. “And then the rug got pulled out from all of these families and the child couldn’t go to school or therapy. When all of that happened, a lot of little problems became big problems.”

Dr. Hain encourages parents to make sure their kids are sticking to a sleep schedule, getting regular exercise and participating in safe activities that spark joy to help boost their child’s mood in good times and bad.

How To Rescue A Superhero

Children with disabilities can never escape the reality of their circumstances, but there are ways to help them cope and soar to personal success. Christina York, Ph.D., is a licensed psychologist at Cook Children’s Behavioral Health Center. When she works with children who are struggling mentally and emotionally with a disability, she takes a page from the superhero playbook.

“Every superhero has a superpower. I encourage kids to focus on their ‘superpowers,’ which may be hidden,” Dr. York said. “Think of Superman and his adoptive parents figuring out he had superpowers as he grew up. We may discuss their ‘hidden superpowers’ that they aren’t yet aware of due to focusing on what is wrong.”

Maybe the child has a wicked sense of humor and is able to make others laugh and smile. Perhaps their circumstance gives them a keen sense of awareness of the needs of others and they are eager to help, encourage and show kindness. Does the child have an athletic, artistic, musical or creative talent that outshines their disability? Whatever the strength, the key is to help your child identify it, own it and use it to reframe their focus on what they can do rather than what they can’t. Show them they are more than their disability.

“Finding either character strengths or other areas of functioning where they feel confident can help buffer the effects of their disability,” said Amanda Smith, Ph.D., a licensed psychologist at Cook Children’s Behavioral Health Center.

Dr. Smith encourages her patients to research and learn about well-known people with similar challenges, as well as connect with other kids with disabilities, in order to see life’s possibilities and develop a circle of support.

Age-appropriate explanations about their diagnosis help kids better understand and cope with their circumstances. Telling a child too much or too little, or getting too technical, may lead them to think the worst, Dr. York said. Once you and your child have a good grasp on the diagnosis or disorder, consider sharing it with those in your circle.

“I think the most important thing is having the correct knowledge,” Dr. York said. “Then we walk kids through choosing who and what they want to tell about their disability. We can go into the school and tell school staff so that they're aware and can provide support. In some cases the school counselor goes into the classroom to talk to a child’s peers about their disability so they have a better understanding of what is going on and aren’t constantly asking the child ‘what’s wrong with you.’ Some kids may not want to tell anyone and feel isolated. They may benefit from discussing why they don’t want to tell anyone and how they might tell trusted people about the diagnosis, including good friends, if they change their minds.”

There are so many things children with disabilities cannot control about their bodies and lives. Where they can have a say, they should.

“Let them have a voice because it feels like their body is constantly at war with them,” Dr. York said.

Listen to what they are saying they need and work with their medical team to safely adjust care and therapies to achieve a balance for physical, mental and emotional health. A short break from therapy or a restructure of their therapy schedule may be all they need.

When a child’s disability can’t be seen, like in the case of a learning difficulty or chronic illness, it’s easy to mislabel them as lazy or having a behavior issue. This can open the door to feelings of frustration, failure, rejection and isolation. Protect against these hurtful labels by informing your child’s school and teachers about their challenges. Help your child understand the strengths and weaknesses associated and not associated with their disability and teach them how to advocate for themselves, according to Dr. York.

Most importantly, if you think your child is struggling, don’t wait to get help. It never hurts to talk to someone, even with the most basic concern. Intervening early can be a buffer to more serious issues, including suicide.

.