How To Talk To Your Child About Their disABILITY
*Originally posted January 23, 2019
Our children are growing up in more inclusive classrooms and schools than ever before, and while this gives me hope for more inclusive workplaces and communities, we must teach our children about neurodiversity for this to be successful. Understanding neurodiversity is as important as teaching our children that people come in all different shapes, colors, and sizes, all worthy of love and opportunity in this world.
Teaching neurodiversity begins with helping children understand their own strengths and needs. Once children understand themselves, they realize everyone else has their own constellation of abilities as well, and when we work together as a group, classroom, or community, we can do great things!
One of the most frequent questions I hear from parents is this: How do I tell my child about their diagnosis? This task feels daunting because no one wants to tell someone that something is “different” about them, especially when that someone is your precious child. You don’t want to hurt them and you don’t want them to ever think they are “less than.” I believe that we are actually the ones with the baggage about “different” meaning something negative. While “different” might mean that something is harder for your child, “different” never means “less than.” So I prefer to not even use the word “diagnosis” and instead focus on abilities and needs for support. We all have abilities and we all have needs, so let’s understand them and support one another.
Focus First on Abilities
We get more of what we focus on. If we only focus on the DIS in disability our children will notice more barriers, more challenges, and more frustration…and so will we. If we focus on the ABILITIES, our children will notice what they CAN do and we will get creative in helping support them to make that happen. This is what I want children to know and trust: You won’t be good at everything, but you can be really good at YOUR thing.
As writer and educator, Jessica Lahey says: most of our kids are “perfectly average” and our American education system is designed with a general curriculum for this reason. However, when our children begin to notice their differences, we need to educate them about their brain. We also need to provide them with individualized and differentiated instruction through 504 Plans, IEPs, and gifted and talented curriculum (but that’s another blog post for another day).
Arm Yourself With Knowledge
One of the most important reasons for your child to receive a thorough developmental or psychological evaluation is to create a roadmap of their strengths and needs for the adults in their life to understand. This information will also help you teach your child about how they learn, and understand which skills they can do independently, and in which areas they need to ask for help.
While I never recommend sharing specific scores from an evaluation with children, understanding ranges of skills can feel enlightening for them. So, consult with the psychologist who completed your child’s evaluation and come up with a plan to teach them about their brain when they are ready.
“So When Are They Ready?”
Like everything else in child development, there is no magical age. They are all on their own path. And, like other tough conversations, talking to your child about their abilities is not a one-time conversation. Usually, children are ready to talk about their learning style when they begin to question their abilities. It’s best to begin talking to your child at the first sign of frustration. Many kids wrongly assume that they are no good at EVERYTHING when they are struggling with just ONE thing.
Maybe they have noticed that they are awesome at understanding things when talking to people, but then really struggle when they have to put puzzles together. Maybe they have noticed that their brother just shrugs things off and moves on while they have huge upset reactions. Maybe they can understand everything, but they work much more slowly than their peers. Once children begin to notice these differences, it’s time to educate them on their “smarts.”
Children are concrete, and many are literal thinkers, so understanding physical differences is a helpful framework. Begin by explaining the different abilities that your child can see, such as a classmate with cerebral palsy who uses a walker, a classmate with diabetes who needs an insulin pump, or even a friend who wears glasses. Once they have a solid understanding of varying abilities, you can then explain that there are some differences they cannot see because they are inside our brain.
I like to call these inside-our-brain abilities “smarts” and some are bigger than others. Many children assume that academic skills are the only kind of smarts we have. Nope! We have math smarts, reading smarts, music smarts, sports smarts, computer smarts, social smarts, emotional smarts, and the list goes on.
Once children are clear on all of their “smarts,” we can explain to them that there are some “smarts” that are smaller than others and we need extra help to learn in those areas. Now you can explain the purpose of therapies that your child currently has or might remember.
“Remember Ms. April, who you used to play with at OT? She was helping your brain get better at being in charge of your body, especially when you get excited or upset.”
“Remember Ms. Robin, who used to play word games with you? She was helping you grow the part of your brain in charge of talking so you can tell people your ideas with words.”
“And you see Dr. Emily to practice noticing big feelings, how to talk about them, and solving problems to feel better.”
Some Combinations of Strengths and Needs Have a Name
While it’s most important for children to understand their strengths and needs, it’s also helpful for them to understand that some combinations of strengths and needs have a name. This can help them identify with other children or adults who also have a similar pattern of strengths and needs.
For children with Autism, it can be helpful to explain that when you have a super “smart” (e.g., memory, savant skill) along with a need for support with language and social development as well as anxiety and/or sensory sensitivities (e.g., noises, lights, clothing), that this combo of “smarts” and needs is called the autism spectrum. I intentionally leave out the word “disorder” only because I’ve rarely, if ever, found that word helpful. A Venn diagram can help kids understand how their strengths and needs combine to make them uniquely them. You can use this visual for any diagnosis so that children can see that their abilities are all connected.
Imagine this: Disabilities are just a variety of abilities, and some need extra support. Adults can identify needs and compassionately help children, modeling for them to do the same for one another. Once we normalize that everyone has different abilities, children will become more open and curious about everyone’s style of learning, and neurodiversity will be celebrated.
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