The opening scenes of Pixar and Disney’s “Finding Dory” shows Dory’s parents practicing with young Dory how to tell her fish friends about her short-term memory problem. They want to give her independence and push her to go play with the other fish.
Often parents of children who have learning differences or mental or physical illnesses find themselves in this situation: trying to give their children the right words to explain to the outside world what has become a big part of their lives.
We asked experts — Dr. Sonia Krishna, child and adolescent psychiatrist at Seton Mind Institute; Dr. Shimona Thakrar, director of inpatient pediatrics and newborn nursery for Baylor Scott & White Medical Center, Round Rock; Dr. Lindsay Elton, pediatric neurologist with Child Neurology Consultants of Austin; Kelly Wagner, child life specialist at Dell Children’s Medical Center of Central Texas; and Robyn Moyer, child life specialist at St. David’s Children’s Hospital — how they help children explain their conditions and become advocates for themselves in social and school settings.
All of them said it depends on the age of the child and the child’s comfort level, as well as what the medical, mental or learning difference is, but many of them have had kindergartners and first-graders who are able to clearly articulate their illness or learning difference to their friends.
Here are their suggestions:
Be honest with your child about the disability or diagnosis. Don’t try to sugarcoat it. Don’t promise that they will just have to do this series of treatments and then be done. You can’t guarantee that will be true. If additional treatments or therapies are needed, you don’t want to have a child refuse to do them because you didn’t keep your promise. It also turns your children into liars to their friends when they have more treatments to do.
Ask for honesty back. Teenagers especially like to hide what they are feeling or problems with their bodies because they just want to be like everyone else. Sometimes younger kids might be overly dramatic about their illness. Honesty is really important.
Make your child a partner in her care. Yes, you will still be the parent making the ultimate decisions, but have your child be involved in understanding what’s wrong, what the treatment is and what will happen if it doesn’t work. Be calm and reassuring, but also be honest, too. Don’t believe your child is too young to understand. Be wary of a doctor who wants to just talk to the parents and not talk to the child as well.
Give your child age-appropriate language. Younger children don’t need to have to explain big medical terms or how the body works in detail because their peers won’t understand what they are talking about. A child that has diabetes might start by explaining that she has too much sugar in her blood, which makes her sick. Later she might explain that her pancreas doesn’t work and she has a pump to do the work of the pancreas.
Don’t hide the illlness or different, but not everyone needs to know either. Some illnesses, like mental illnesses, might come with a stigma. Your child might not be ready to let everyone know what is going on or might w
ant to give some details but not tell everything. Respect that. It’s OK to for her to say that she went to a hospital to get better and not say that it was for mental illness or addiction. Don’t let her lie either.
Use positive words. “Special” has become stigmatized. Use phrases like “this is what makes you unique” or “everyone is an individual with differences.” And really, today when many kids have a medical or learning diagnoses,
everyone really is different. Everyone has things they are are strong at and everyone has imperfections. Play up the strengths that come out of this illness such as the ability to give himself shots or the ability to memorize when reading is hard. Sometimes the negative can come with positives.
Don’t forget about talking to the child’s siblings. Often they have their own worries and concerns. Often they start acting out when the attention gets focused on only the sick child. Child life specialists can help you work through this as can support groups. If siblings will have to go to a lot of appointments with you, give them things to do at those appointments as well as create their own special time that doesn’t revolve around their sibling.
Enlist experts to help. Child life specialists and nurses will often go to children’s schools to explain to teachers and students the situation. They can help ease other children’s fears and satisfy curiosities without all the explanation relying on your child or you.
Find a support group for your child and for you. Not feeling so alone, being able to talk to people who have been down this road before can be very helpful and go a long way in not feeling like an oddity. Also check if the illness has a specific summer camp or a charity walk that will give an opportunity to connect with a supportive community.
Be sure you can deal with your emotions. Often parents become very busy worrying about their children and forget about themselves. Getting your own counseling, your own support group can be essential. Make sure to maintain friendships and interests and practice self-care. Don’t forget about setting aside family time and couple time, too.
Talk to school and put resources in place. Find out if your child qualifies for a 504 plan or an individualized education plan or maybe even homebound education services, in
which a teacher comes to the hospital or your home. Make sure your child is involved in what accommodations they will receive and what is not in the accommodations. Talk to your child about being an advocate for getting those accommodations such the use of a computer, physical education adaptations, and oral or written instructions. As children get older, they should be in those 504 or special education meetings. Also, make sure teachers, not just the school nurse, knows about the need for life-saving tools like an epi pen, an inhaler or glucose gel and where those tools are stored. The more people know, the safer your child will be.
Consider making cards that your child can hand out to classmates or to adults to explain the disease or disorder. Cards limit a child’s need to constantly explain or answer the same questions again and again.
Watch for bullying and report it. Work with the school, but also work with the parents of the bully to try to give them the words to explain to their child about your child.
Do not make the child’s life only about the disease or the difference. Play up their strengths and talents. Make sure their schedule has more than medical and therapy appointments in it. Continue to make them a member of the family that has responsibilities (chores, expectations), too, and not just the person who everyone cares for all the time.
Remind your child that none of this is his fault. This is how he was made and it’s just part of him, like being that amazing dancer or that awesome artist.