In Texas, we know that there are close to 3,000 young adults under 30, youth, and children involved in the ALS experience.
Young children and teens often have a tough time understanding what is happening to a loved one who has been diagnosed with ALS, and there are very few resources available to help them. That is why we have created programs to address their unique needs and help them cope with a parent’s, grandparents, or other family member’s diagnosis of ALS. Of those many programs for young caregivers, our ALS Texas fAmiLy talkS for Kids. is an amazing resource for younger caregivers ages 7-12 and their parents.
For these young caregivers, growing up can be challenging enough. fAmiLy talkS is an interactive presentation that allows children to ask questions and learn about ALS, in ways that are practical for their age group, while also equipping their parents to continue these important discussions at home. Director of Community Programs, Tonya Hitschmann facilitated the presentation and discussed the concepts of how to help youth and children better understand ALS and know that they are not alone.
Although they are not always the ones providing the care, children who love someone with ALS struggle with the feeling that nobody understands what they are going through. This often impacts their school performance and social life because it can be hard for them to find people who relate to their situation. Tonya presented multiple games and activities during the presentation that allow children to express how they are feeling and identify who they can talk to.
For parents of these young family members/caregivers, understanding and talking about ALS with the youth and children in your family is important. Below are some of the ways to help talk about ALS to your child.
1. Know that ALS can feel like a maze.
ALS can be hard to talk about and understand, it is like a complicated puzzle or difficult video game. Utilizing scenarios that a young caregiver can understand will allow this puzzle to feel not as complicated for them. A common scenario that Tonya uses is the “Phone Service Scenario.”
“ALS happens in the body when the neurons stop talking to the muscles. Think about it as if you are on the phone with someone, you get on the phone and you are talking on the phone, and it cuts out. Like you are in a bad spot, and you can’t hear what they are saying. That is kind of like what ALS does, the motor neurons can’t communicate- the service has failed.”
2. Kids have lots of questions about ALS.
During a difficult situation, kids often will have lots of questions to help them try and understand the situation. With all that of the collective trauma that our world has experienced in the past couple of years, youth and children can struggle with “The Four C’s” when trying to understand ALS. Unanswered questions can lead to anxious thoughts. Some common questions that children often ask:
“Can I catch it?”
“Did I do something to cause it?”
“Can I cure it?”
“Who will Care for me?”
While explaining the answers to these questions can be difficult, it is important that children know and understand that ALS is not because of anything that they have done. Tonya explains, “One of the neurologists that I know says that ALS always happens to the good guys and that stinks, but it is not because of anything that you [the young caregiver] has done.”
3. Let your child know that it is okay to ask questions and to talk to people they trust.
Being a young caregiver may mean that the child feels less cared for, and experiences less personal attention. Take time to talk with the children in your family and make a list of all the people who love them, such as a teacher, a parent, a coach, or a mentor, who they can talk to about how they are feeling.
4. Understand that caregiving is a big job, and that the child may have to miss certain activities.
No one likes to feel left out and making sure that children understand that sometimes they may have to miss certain activities can help them cope by giving them time to anticipate certain situations.
Caregivers and young caregivers’ feelings and emotions are incredibly valid. If you or a young caregiver in your life is struggling, ALS Texas has many resources available for children and their families affected by ALS. For more resources and information, reach out to our Director of Community Programs Tonya Hitschmann or click the link below to learn more about ALS Texas resources for young caregivers.