How to talk with family members about your child’s disability

Learning your child has a developmental disability or delay can come with a range of emotions. On top of your own emotions as a parent, talking with family members about your child’s disability may be difficult due to their own concerns or lack of understanding.

Below are some tips on how to talk with family members about your child’s disability that were presented at a parent discussion group with The Warren Center’s Dr. Kelsey Klindt.

1. Here’s how to talk to children about disabilities

You will often encounter curious children who may pose questions about your child, whether they be cousins or friends at your child’s play date.

Normalize conversations:

• Mom and board certified behavior analyst, Emily Cummings, says it’s normal for children to be curious about differences. She recommends as a parent, you should be open about disabilities and special needs with other children because this can help build sensitivity, compassion, and acceptance in children.
• You should encourage questions and answer them. According to Cummings, you should explain things at a child’s level. For example, a preschooler needs less information than a teenager.
• Look up answers and don’t be afraid to say “I don’t know.”
• Set boundaries and guidelines.
• Prioritize kindness. Cummings encourages parents to look for similarities and not only focus on the differences when talking to children.

Examples:

• A child is having a meltdown because he didn’t get what he wanted.
  • Child: “Why is he doing that?”
  • Parent answer: “He is feeling sad because he didn’t get his toy.”
• You and your child see a girl in a wheelchair.
  • Child: “What’s wrong with her?”
  • Parent answer: “She uses a wheelchair to move around.”
• There’s a new kid in class who is blind/visually impaired.
  • Child: “Why can’t they see?”
  • Parent answer: “I’m not sure. But it seems like they really like the sensory bin, just like you!”

2. How to talk to siblings about their siblings’ disability

Child development experts with the Center for Parent Information and Resources say it’s important to be open, honest, and give information at their level. All of their feelings are valid and appropriate. Parents should offer validation and not be dismissive.

Know that their reactions may vary across a wide spectrum:

• They may be protectors and advocates.
• They may become deeply involved in taking care of their sibling.
• They may experience great joy when simple goals are achieved.
• They may worry about their sibling’s future.
• They may feel bitter or resentful.
• They may withdraw or feel rejected or neglected.

Things like age, gender, and birth order can make a difference:

• The younger the sibling is, the more difficult it is to fully understand, according to experts with CPIR.
  • Younger siblings may be born into families where things are done certain ways.
  • Older siblings may go through a period of adjustment when things have to change.
• Have siblings participate in routines and care activities with each other.
  • But remember – it is not their responsibility to do everything for their sibling.
• Make time for each child individually.
  • Not everything has to be done with everyone.
  • Give some special attention to the child without a disability.

Click here for a list of 10 great books to read to your child if they have a sibling with special needs.

3. How to talk to grandparents and extended family about your child’s disability

Opening the conversation:

• Prepare what you want to say.
• Set the stage – find a comfortable time and place.
• Be specific – inform but don’t alarm, according to Lisa Cvetnich with The Autism Connection.
• It is up to you to decide when and how much to share.
• Let them know if you are not yet comfortable answering questions.
• Be prepared for less than perfect responses.
  • Generational, cultural, and language barriers are very real.

Getting others involved:

• You do not have to do everything alone – it takes a village!
• Invite grandparents, aunts, uncles, and cousins to be part of your routine.
  • They may be able to attend doctor’s appointments and therapy sessions.
    • This can help them better understand your child’s needs, may lead to an Ah-ha! moment.
• Show and practice daily activities with family members.
  • Give specific, simple instructions.
    • Especially if they will be involved in the care of the child.
• Make a plan for family gatherings and outings.
  • Know your child’s limits; pack preferred toys, snacks, meals.
  • Set boundaries and rules with family members.
    • Remember that not every gathering is going to be doable.

4. What if they still don’t get it?

• According to Lisa Lightner with Fun & Function, understand, like you, they have experienced a loss (of the ideal).
  • They may respond defensively, which is not always comforting to others.
• Keep a cool head when explaining and reiterating.
  • With any diagnosis, there is a lot of information to process and absorb.
  • Explain in simple terms, provide printed information, and describe symptoms.
• Set boundaries regarding what your child needs.
  • Regardless of whether they fully understand/accept a diagnosis, there may be certain rules that others have to follow.
• Emphasize strengths and good qualities.
  • Find a connection or shared interest between your child and a family member, suggests Lisa Jo Rudy with Verywell Health.