Explaining your complex child to other children
Published June 5, 2023. Author: Lisa CostenIt can be extremely difficult to explain your child’s condition to others, especially children. As a parent with a child with a DYNC1H1 variant and over a decade of experience as a science educator, the use of analogies is often exactly what’s needed.
In a quick situation, like on a playground, my wheelchair using daughter will often get questioned by her peers, “What’s wrong with her legs?” Often the children look up at me, completely ignoring my daughter. Since my daughter is verbal, I usually redirect the child to my daughter with a simple “Ask her.” She often gives a says, “My legs don’t listen”, or just stares down the child if she doesn’t feel like sharing or can’t find the words. This allows her sharing to become her choice.
For families who are working through learning how to cope with these questions or who have a particularly curious child, I strongly suggest the picture book, “What Happened to You?” By James Catchpole. It goes through the emotions that these questions can bring up in a child with disabilities, and how redirection without he sharing of personal medical information can be easily scripted.
Sometimes, though, a bit more of an explanation is helpful as children grow and make sense of the world. Below is an article comparing how a city works with the human body, and how the DYNC1H1 variant can cause difficulties in the body’s functioning.
Imagine your body is like a very busy city with lots of workers doing different jobs. For everything to work smoothly, these workers need to get the right messages from the brain, like how traffic lights tell cars when to stop and go.
Some of the most important workers are in your muscles, which help you move, walk, and play. These workers get their messages from special helpers called neurons. Neurons are like delivery trucks that carry messages from the brain to the muscles.
In a child with SMA-LED caused by a genetic problem in the DYNC1H1 gene, there is a problem with these delivery trucks. A gene like DYNC1H1 has a set of instructions for building and maintaining the delivery trucks. When there is a variant, or change, in this gene, it means the instructions aren’t quite right. So, the delivery trucks can’t work properly.
Because of this, the muscles don’t get the right messages from the brain. Without the correct messages, the muscles can’t work well, and it’s hard for the child to walk, or talk, or write. It’s like trying to play a game when the rules are all mixed up.
In our body city, there are different workers in our brain that help us do things like focus, learn, and interact with others. These workers need to get the right messages too, to help us pay attention, understand feelings, and communicate well. Sometimes, children with challenges with muscles also have other challenges like autism and ADHD.
Autism affects how a child understands and interacts with other people. It can make it harder for them to talk, understand what others are feeling, and play with friends. ADHD (Attention Deficit Hyperactivity Disorder) makes it harder for a child to pay attention, sit still, and control their actions. It does not mean that they do not have to behave appropriately, but it is much harder for them to sit still and learn than it might be for children without autism and ADHD, so they might need extra help and reminders.
In children with DYNC1H1 gene disorders, the mixed-up instructions from the DYNC1H1 gene might also affect how these brain workers get their messages. This can make the brain workers less able to help the child focus, understand feelings, or communicate. Just like how the delivery trucks can't get the right messages to the muscles for walking and talking, they also can't get the right messages to the brain workers for paying attention and interacting with others.
So, in summary:
The DYNC1H1 variant means the delivery trucks (neurons) can’t work properly.
This makes it hard for muscles to get the right messages, affecting walking, talking, and movement
It also affects brain workers that help with focus and interaction, leading to difficulties with communication, understanding feelings, and paying attention, which are related to autism and ADHD.
All these challenges make it harder for the child to walk, talk, communicate, and focus, just like trying to live in a city where the traffic lights, delivery trucks, and rules are all mixed up.
Lisa Costen is the president and founder of the DYNC1H1 Association, and has taught science for 15 years in all subjects from grades 6-12. She has two daughters and lives in New England. To reach the author, email contact@dync1h1.org
