Disability & Medical Advocacy: Teaching Functional Life Skills

Most parents of a child with a disability will have had more encounters than we care to remember with other kids — and adults — staring at, pointing out, and/or asking about their disability (sometimes kindly, more often not). Kids usually aren’t very good at considering the impact of questions like “Why does he talk funny?” or “Why does she use a wheelchair?” before they ask them — and worse, these questions are almost never directed at the child in question. And no matter how well you prepare yourself or your kid with an answer, it’s just really hard to get right.

So how do we talk to our kids about their disability? Dr. Betz, who is also the health care transitions specialist for CHLA’s Spina Bifida Program, feels that it starts with a conversation — or many — about why they may be different from their friends. “It became very apparent to me early on that many kids have never had the conversation about what to say if their friends ask questions, and that really requires some practice,” she tells us. Richard Rosenberg spends a lot of time thinking about this — especially when he’s facilitating person-centered plans with students. He says it is vital to help kids understand that they have a disability from a young age — and that he starts having these talks with kids earlier than some of his colleagues.

Founder and clinical director of CARE-LA, Dr. Lauren Stutman, explains why it's important that we push past the stigma of getting a diagnosis, whether that's for mental health or a developmental disability, and help kids embrace who they are. Something that a diagnosis may do for your child is give them language to what they are feeling and help them feel like they aren’t alone. It can also create a whole picture of your child and help you, and them, to see them as a whole person.

Dr. Stutman says that having a diagnosis can help “because you're then part of an in-group on some level, and you can learn about your neuro type and you can understand yourself more deeply. For a lot of kids, what I do is I explain that they have what's called a ‘sticky brain.’ This type of brain is quite good at learning, it's like a sponge. However, the problem is that some things stick to it too well, so you get to give the information in a loving and healthy way. It’s really about the way that whoever is sharing the information shares it as I've had a lot of kids leave the office with a big smile on their face. And then teaching the parents how to see the whole person, including the disorder, can really help."

Several years ago, there was an article in the New York Times called “The Stories That Bind Us” about a 2001 study on what creates resilience in kids. One of the study’s authors decided to look into the question of resilience after his wife, a psychologist who works with kids with learning disabilities, told him she’d noticed that her patients who knew a lot about where they came from tended to deal better with challenges. The study bore this out: kids who knew their family’s history, and specifically, narratives about both successes and hardships, weathered challenges better and had more self-confidence than their peers. In short, they had “a strong ‘intergenerational self.’ They know they belong to something bigger than themselves.”

It’s not hard to look at that study and see how we could apply the same logic to telling our kids both the story of themselves and their disability: for instance, what happened when they were in utero or at birth that led to their cerebral palsy, how this works, the tests, all the therapies they had when they were little, and how hard they worked to get where they are.

Learning their histories, the hard and the great, gives kids a sense of where they fit in their families and how they became who they are - and knowing these things helps them understand their disability, and that it is an essential part of them.

If we should talk to our kids as early as possible about their disability, Dr. Betz believes this should also carry over to their participation in IEP meetings. She says, “I advocate that kids be included as early as in elementary school. Their participation is important, especially in terms of being talked with instead of talked about,” which something many of our kids become all too used to at an early age. She advises that we prepare our kids in advance by explaining what the meeting will be like and emphasizing that they will be in a “hopefully supportive environment that enables them to practice expression of their needs, wants, and interests.” Ask them, “What would you like? What would you want to say to your teachers?”

Rosenberg agrees: “When kids are at the meeting, adults have to focus on the whole being — not just services and supports,” he says. But how can we involve a child who might interrupt (or disagree!) a lot, or whose behaviors may become disruptive? When we spoke with Rosenberg about preparing for the high school transition IEP in particular, he suggested that if participating in the full IEP meeting isn’t in your kid’s best interest, think about how you can involve them in the meeting in a way that plays to their strengths. Perhaps they only join during the welcome portion of the meeting, or they can record themselves discussing their interests and goals, and you can play the video for the IEP team at the meeting.

This goes back to accepting and embracing their disability as an essential part of themselves. Rosenberg reminds us that it’s all about “finding out what really makes this kid tick. What are their dreams? What are their nightmares? What are their gifts? And what do we need to do to reach the dreams and minimize the nightmares? Part of that is helping kids understand that they have a disability.”

Undivided Navigator (and parent) Kelly emphasizes the importance of teaching neurodiverse kids how their brains work and how their accommodations help them, which is part of developing self-advocacy skills. She also encourages parents to talk with their kids about the gifts of neurodiverse brains, such as creativity, three-dimensional thinking, or strong narrative reasoning. "There's a movement to consider the 'superpowers' that can come with having a disability. Like people with ADHD can focus on more than one thing at a time. Most people can't do that. Some people don't like the superpower angle because it is legitimately hard to have a disability, but in my experience in working with kids with disabilities, it can be a powerful tool to help build their self-esteem up."

She continues, "When my daughter was in second grade, her peers would question why it was so hard for her to learn how to read and why writing would cause her to get overwhelmed and shut down. This made her feel awful. With her permission, I read my favorite dyslexia picture book to her class and talked to them about dyslexia and all of the famous people who have it. I think it helped them understand that there's nothing wrong with her, she's actually very smart, her brain just works differently. It took some of the stigma away. As far as I know, they stopped questioning her. Now, she proudly talks about having dyslexia whenever someone comments on her spelling. I think that plus teaching her about her brain (strengths and challenges) as soon as she was diagnosed were both really helpful."

“A lot of teaching advocacy is highly dependent on what kids learn at home,” Dr. Betz says. The first thing our kids need to understand is that it’s appropriate and acceptable for them to participate in discussions with their doctors, and that it’s encouraged for them to ask their own questions. “Parents can prepare their kids for their upcoming visit and have them ask a question of the doctor, even when they’re very young," she adds. “Parents can also redirect a question asked by the provider to the child, especially if the child has been prepared beforehand.”

Again, she reminds us how important it is from a very early age to create the expectation that they will be talked with instead of about: “It’s important that there be an open conversation between parent, child, and provider.”

Taking ownership over their own medical care sets the stage for later medication management as well. Many kids need to take medication every day — they might have to learn how to swallow pills or deal with a liquid medication that needs to be measured exactly right. They might have to take thyroxine every day at the same time and wait twenty minutes before eating. They might have intellectual disabilities, seizures, challenging behaviors, and more. How do we explain the medication to them and empower them so they feel good about how it helps them feel and function better?

Dr. Betz reminds us that we have to start by considering the developmental stage our kid is in. “For a child, I wouldn't necessarily be concerned with the name of the pill they take because they can be complicated and hard to pronounce, but they should know the key factors: the color and the composition (if it’s a pill or a syrup); why they’re taking it (it’s for my kidney, it helps me breathe better); and when they take it during the day. And then of course, while they’re probably not going to have an adverse reaction if they’ve been taking it for a while, explain that it could happen, and what might that look like in very simple terms.”

It’s also important to encourage our kids to recognize the feeling they have just before they need to take medication, such as for kids with seizures, muscle spasms, Type I diabetes, bee sting allergies, asthma, and so on — and what they need to do when they have that feeling. Dr. Betz recommends we start by asking ourselves, “To what extent can my child identify when a seizure is going to happen? This is also a really good discussion to have with their provider or neurologist.”

As many of us may have learned (or are still learning) from toilet-training, consent is essential to build skills that lead to independence, so we need to involve our kids in the learning process. Some kids do well with reminder watches that send discrete signals when it’s time to take medication, for example, though Dr. Betz says this doesn’t work for some kids, as they will just turn the alarm off. Teenagers may use not taking medication as a part of their rebellion; one fellow Undivided parent tells us that The Teenage Brain is a good book about how teens can be bad at making good judgements — and how to help them develop this skill.

When our kids are ready to embrace their independence, let’s encourage them to be an integral part of the process of figuring out what works best for them. Which leads to our own work as parents: learning to listen to our kids and to trust them when they’re ready to manage their own care.