By Alexandra Tomei and Marysa Enis
You’ve taken your child to the doctor. You’ve communicated with the school. You’ve filled out a million forms. You’ve answered a million questions. Now, at the end of what feels like an excruciatingly slow process, you’ve been told that your child has a disability. Now what?
Unfortunately, there is no clear answer to that question. Like every other annoyingly vague recommendation for parenting, the “best” approach will differ for each child and within each family. However, there are some things to consider as you decide when and how to talk with your child.
What do you know about your child?
You know your child better than anyone. You’ve been communicating with your child longer than anyone. Based on what you know, how might your child respond to information about their disability? No two children are the same, and what works for one child may not be what is best for another. Consider:
Pre-school: Is your child in school yet? If not, there is likely no need to tell them anything they haven’t asked. As with most aspects of parenting young children, the primary task is to keep them safe and teach them how to keep themselves safe. That may mean helping them communicate with other kids on the playground, but it probably doesn’t mean going in-depth about their disability. If another child asks what’s “wrong” with your child, remember that they mean no harm. It’s okay to name your child’s disability (“She has autism,”) and give a short explanation, (“It makes it hard for her to talk, but she loves to run!”). Leave it at that.
School-age: How do the children in your child’s grade interact? What are teacher expectations? When considering how much to tell your child, it’s important to consider the messages they get from others, as well as the conclusions they may draw from those messages. One way is to simply observe and start a conversation about potential stressors (“I’m wondering how you felt about..” “I’m wondering how you respond to…”). Unless there is a safety risk, avoid the temptation to jump in and manage interactions for your child. It pays to wait and see how they respond. If your child is distressed by situations or looking for answers about them, it might be time to discuss their disability. If you choose not to tell your child about their disability, be aware that they may eventually hear it from someone else.
Is your child the type to ask a million questions and process what you say? Or nod and pretend to understand? Do they tend toward optimism and confidence, or self-doubt and defeat? What you tell your child will very much depend on how they are likely to receive the message. Based on your child’s personality, decide whether information about their disability is likely to hurt or help. It’s important to put your feelings and personality aside and think only about what your child needs. The ultimate goal is for your child to persist with challenging tasks while advocating for what they need to do so.
To what degree is your child able to understand what a disability is? Just like walking and talking, social intelligence develops in stages. Before a child can understand the concept of a disability, they need to understand the concept that people are different from one another. At first, they will start to notice physical differences, like gender, hair color, height, and shoe size. After that, they learn that people have different thoughts, feelings, and opinions from one another. The first step is for your child to notice and appreciate their own attributes and feelings. After that, they may learn to recognize and appreciate differences in others without judgment. Before talking with your child, find out how aware they are of differences between themselves and peers. If they are aware, are they bothered by the differences? If your child is aware and bothered, it’s probably time to talk.
How will you talk to your child?
As you’ve probably figured out, there is no guarantee that conversations with your child will go the way you’d like. But hey, that doesn’t mean you shouldn’t try, right? When you decide the time is right, here are some tips to help guide your conversation:
Children of all ages are keenly in tune with their caregivers’ behaviors and moods, even if they don’t have the words to express it. That said, parenting children with disabilities is beyond hard. Many parents experience grief, fear, confusion, exhaustion, marital discord, and isolation. If you haven’t already, seek your own support and make self-care a priority. If you are able to get to a place of confidence, optimism, and empowerment, it will help your child learn to feel the same.
It can be excruciating to watch your child struggle, especially when society seems determined to play to their weaknesses instead of their strengths. But for every negative, there is a positive, and you can help your child find theirs. Is your child amazing at art? They can be amazing at art AND have ADHD. Are they incredibly funny and kind? They can be funny and kind AND have dyslexia. Too often, children begin to view themselves as their disability, and it doesn’t help when adults focus on what isn’t working instead of what is. That said, noticing strengths doesn’t mean ignoring weakness or pretending they aren’t as frustrating as they seem. It means intentionally giving your child experiences that play to their strengths, then helping them notice when good things happen as a result.
Part of empowering your child is helping them to take ownership of their goals and progress. Inherent in your child’s invisible disability is the fact that they are developing something more slowly than other children, but that doesn’t mean they aren’t developing it at all. Whether it’s impulse control, social skills, reading, math, fine-motor control, or emotional regulation, it is important that your child knows what they are ready to practice and how they will practice it. But they aren’t alone in that need. All too often, children with disabilities are made to feel that they are the only ones with room to improve. Strive for a family culture in which everyone is always working toward a goal. Support and encourage each other in meeting those goals. Perhaps most importantly, acknowledge when you fall short of a goal and have a plan to make it better. Doing this helps your child see that setbacks are a part of the human experience.
Read books about children with disabilities. Point out positive messages in movies and on TV. Make a list of famous people with disabilities. Study history. What modern society views as a disability might actually have been a strength in former times. Here are some resources to get you started:
Psyched Services offers comprehensive evaluations, parental support, intervention planning, and progress monitoring for children of all ages. Visit our website today!