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.

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It may sound like a melee, but this is part of a unique program that launched last fall at the Jane Justin School at Cook Children’s Child Study Center. The program began as a R.A.D. self-defense course and has since evolved into a curriculum called ‘Hard Target.’ The 12-hour class teaches self-defense to students with developmental and learning disabilities in the Center’s Upper School.

On this morning, four female students are participating in a drill. The scenario includes being attacked at an ATM and sadly, because of their disabilities, it’s a situation they’re more likely to find themselves in than the average person.

“We know that individuals with developmental disabilities are three to five times more likely to become victims of bullying, assault and sexual assault,” said Joyce Elizabeth Mauk, M.D., CEO and medical director of the Child Study Center.

According to a recent investigative series by NPR called ‘Abused and Betrayed’, the rate of sexual assault among people with intellectual disabilities may be even higher. Reporter Joseph Shapiro said in his report that unpublished data from the U.S. Justice Department shows people with intellectual disabilities are sexually assaulted at seven times the rate of people without disabilities. His series calls the issue an “epidemic.”

The concern surrounding these statistics sparked an idea with the Child Study Center’s team. What if they taught students how to defend themselves, especially during the transitional years when students are preparing to go out into the world to seek employment and possibly even live on their own? Dr. Mauk and her team contacted Security Services at Cook Children’s, which already provided self-defense courses to employees. Together they developed a curriculum specifically tailored to the needs the school’s students, aged 13 to 22.

“The most important thing we want these students to learn is how to protect themselves,” said Brennan McCullars, ‘Hard Target’ instructor and security services trainer at Cook Children’s. “These are people who are much more vulnerable to predators than the majority of the population. They are often trusting of others. They don’t always know what behaviors are inappropriate, so we have to work on that.”

One of the girls in McCullars’ class is 18-year-old Elizabeth. She’s a soft-spoken junior at the Child Study Center’s school where she also interns as a teacher’s aide. She’s small in stature and supportive of her classmates, cheering them on as they move through the course. When it’s her turn to approach the “ATM” – a punching pad leaned against the wall – Elizabeth transforms. There’s no reservation in her voice as she belts out ‘’NO!” and blocks incoming hits. She throws eight punches before sprinting away from her “attacker.”

When asked what she thought of the course, Elizabeth said she feels more confident now.

“In self-defense class, they taught us how to use our voice and how to use our hands and our feet (against an attacker),” said Elizabeth. “It has eased my concerns because I know I can protect myself when my brothers and my support system are not around.”

For Elizabeth’s father, Lonnie Ramon, these new skills are just one more tool in her toolbox. He and his wife believe Elizabeth will be able to live and work independently. He says he feels better about her future knowing she’s had to think through what should be unthinkable situations.

“It’s a crazy world nowadays. You see too many weird and crazy things on TV. People take advantage of others and I’m afraid of that,” said Ramon. “But that’s part of this self-defense course. It’s helping her think about how to get herself out of situations, God forbid they ever arise.”

Along with the four females, a group of eight male students are also going through ‘Hard Target.’ All of the students who complete the class will have a chance to take a refresher course next school year.

“We are excited to offer this one-of-a-kind curriculum,” said Tracie Mann, Ph.D., LBA, the headmaster of the school. “The ‘Hard Target’ program demonstrates our unwavering commitment to preparing our students for the future, both academically and in life.”

In the United States, nearly 1 in 6 children, or about 15 percent, of children from 3 to 17 years have one or more developmental disabilities, according to the Centers for Disease Control and Prevention.

Today, people and organizations worldwide are taking time to acknowledge the challenges those with disabilities face by observing International Day of Persons with Disabilities.

The annual observance was proclaimed in 1992 by the United Nations.

The goal:

• To promote an understanding of disability issues.
• To mobilize support for dignity, rights and well-being of persons with disabilities.
• To create awareness of gains to be derived from the integration of people with disabilities.

At Cook Children's, our physicians work with children with disabilities every day.

So what is considered to be a disability?

"A disability is when an impairment causes a limitation in a life skill," says Warren Marks, M.D., a neurologist and medical director of the Movement Disorders and Rehabilitations Programs at Cook Children’s. "From a medical standpoint, that could be a motor impairment, cognitive impairment or even a social impairment, especially when related to a chronic medical condition."

Dr. Marks treats patients with cerebral palsy, muscular dystrophy and dystonia, all of which are disabilities that can create lifelong challenges.

"Physical disabilities impair the way children interact with their families and peers, and the way their peers interact with them. This can result in secondary social disabilities," says Dr. Marks. "Also, children with motor disabilities have more difficulty participating in many activities which can cause problems throughout their life – a higher incidence of obesity and diabetes and all the complications related to those disorders."

Dr. Marks and his team of physical therapists at Cook Children's have spent countless hours researching complex movement disorders. Currently, they are using the newly developed motion analysis laboratory at Cook Children's to work with experts in endocrinology, orthopedics and nutrition in hopes of understanding the impact of obesity on all aspects of mobility. Their work is not only significant for the medical community, it also offers to patients that their quality of life can be greatly improved.

"We're working hard, even investigating rehabilitative approaches including interactive robotics and assistive technology," says Dr. Marks. "But we have to remember that these investigations take time, equipment and money."

About the source:

 Warren Marks, M.D., a neurologist and medical director of the Movement Disorders and Rehabilitations Programs at Cook Children’sCook Children's Movement Disorders Clinic cares for kids who have challenges with body movement due to illness, injury or congenital ailments. Our team provides your child with a thorough evaluation including a physical examination, complete medical history and testing in order to diagnose the specific type of movement disorder your child has. Based on the diagnosis, the team creates a plan of care that meets your child's unique needs.

According to a lawsuit filed by the American Civil Liberties Union (ACLU) on Monday, the deputy violated the rights of two children when he shackled the kids around their biceps in the fall of 2014. The boy and a 9-year-old girl had both been diagnosed with attention deficit hyperactivity disorder (ADHD). The lawsuit alleges that both children were being punished for behavior related to their disabilities.

ADHD is a common challenge in classrooms across the country. So what should parents and teachers do to prevent a child from becoming too unruly to handle? Lena Zettler, director of Psychology at Cook Children’s, suggests the following:

• Have a plan
• Have a team
• Have an advocate

“What are the steps that will be taken and who are the key people involved? These things should be understood before an emergency happens,” Zettler said. She says it’s important to remember that kids with ADHD most likely aren’t acting up for attention.

“Education is the first step for treatment for ADHD. It’s is a neuro-developmental disorder. It is not a disorder of bad parenting,” says Zettler.

Students with disabilities make up 12 percent of the student population nationally. According to the U.S. Department of Education, they account for 75 percent of the students who are physically restrained by adults in their schools. To prevent such drastic measures from being taken, parents who have a child with ADHD should have a conversation with their child’s teacher about the condition before the school year begins.

Together, parents and school officials need to put a team in place to assist in the child’s education and plan out what will happen when the child acts out.

Parents and school officials also need to designate an advocate, someone the child can turn to for help. The advocate could be an assistant teacher, a counselor or even a principal. By putting a team together and a plan in place, parents can help ensure ADHD children and their classmates get the most out of the school year.

“Taking these steps will not only benefit a child with ADHD, they will help the entire class,” says Zettler.