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Discussing disabilities

“How come I’m not like other kids?” This can be an absolutely heart-wrenching question for any parent of a child with special needs to answer.

Difficult as it may be, it's important to be willing to talk to your child about their disability. It is part of their identity. Talking about their special needs will reduce the chances that your child will feel ashamed, embarrassed, or confused about who they are. They will also be better able to explain themselves to others, with confidence. 

Talking to your child about disability is not a ‘one and done’ conversation,” says Sandra Cicman, resource links director of Children’s Link Society.


“You’ll likely need to revisit it many times as your child’s developmental level changes, or new questions/issues arise. These discussions are so important, as they shape the way your child will feel about themselves, their capabilities, and their future potential.

 

Open the discussion


As a first step, it may be helpful to read a book about disabilities and special needs with your child.

“Reading books that have themes about inclusivity and diversity, as well as books that feature children with specific differences or disabilities, can open the door to learning and expressing thoughts and emotions,” Sandra says.


She recommends It’s OK To Be Different by Todd Parr as a great book to start with.

When reading together, or whenever a question comes up, it is best to answer as directly, clearly, and honestly as possible.

When speaking about differences and disability, model the language you would like your child to use when explaining to others. Ask your child what they want other people to know.  

Help them make a ‘script’ of things they can say to others, if questions are asked, or if strangers give them looks. 


For children who are non-verbal, consider using a visual – such as a card that can be attached to a backpack or carried in a pocket to explain the disability.

https://www.calgaryschild.com/parenting/special-needs/2504-7-highly-effective-habits-of-parents-of-children-with-special-needs

Discuss everyone’s uniqueness

Prior to a discussion about specifics, it is important that our children first appreciate that every person is unique and has different strengths, challenges, and things to contribute.

“Any time you may be talking to your child about challenges, be sure to balance this out by mentioning strengths as well,” says Sandra.  


“It is useful to normalize the fact that we all have things we struggle with, and we also all have gifts and strengths.”

 

Things to avoid

Just as it is important to know what to say, it is also essential to know when to stop talking and listen. They may need some space to process and ask questions. If you notice your child starting to shut down, lose interest or get restless, end the discussion and be open to talking about it again another time.


Avoid long, convoluted explanations about complex subjects. Although their condition may be very involved, it is best to keep things simple and age appropriate. Talk about their challenges as they relate to their daily lives.


Try to avoid language that could lead your child to use their disability as an excuse not to do things. You can do this by consistently building on their strengths and focus on finding solutions to the problems that their disability presents rather than describing it as a weakness.

 

Remember, you aren’t alone

 

Talking with other parents who understand your situation, or are further ahead on the journey, can help you feel more comfortable.  


It is helpful to seek advice from professionals. You can consult with psychologists, pediatricians, special educators, and/or therapists, who may have valuable insights to offer on how to discuss your child’s disability with them.


Another thing that parents can do is help their children meet other children, youth, adults and mentors with disabilities and differences  at places like camps or community groups.


One of the most important things to remember is to emphasize to your child that being different doesn't mean being “less than.” Let them know and constantly reinforce that it is possible to live a flourishing and fulfilling life with a disability.


Talking to others about your child’s disability 

 

Parents of a child with special needs have all seen the looks strangers give them at the playground, or heard the unwanted advice on how they should handle a situation from a stranger.

 

Although it’s sometimes hard to face this judgment from someone you don’t know, it doesn’t compare to the pain of your neurotypical child saying you don’t love them as much because you give more attention to their neurodiverse sibling or your mother telling you that you “just need to be more strict” with your child with special needs.

 

Whether their disability is physical, developmental or cognitive, those who live with, care for, or spend any time at all with your child may have questions they are uncomfortable asking. 

 

Here are some tips for opening up the disability discussion with the people in your lives:

 

Discussions with sibling(s)

 

Create a safe place where siblings can share their thoughts and feelings, without a sense of judgment. Be curious – ask the sibling questions about their feelings and honor their responses. 

 

Check in often and take time to explore why siblings feel the way they do about some of the issues that may arise.

 

Talk with the sibling about why the child with a disability may need more attention.  

 

“Tell your ‘typical’ child(ren) that they are equally as important to you and that their needs matter just as much as their sibling’s needs do,” says Sandra.

“Be intentional about your desire to plan some special time, focussed solely on the sibling(s) without the disability.”

 

Here are four practical ways to talk to your typical child about their sibling with special needs:

  1. Ask them what they think about their sibling’s needs. Fill in any gaps or correct misunderstandings with simple, age-appropriate statements.
  2. Use simple language and ideas that they can understand. “Your brother has a hard time regulating his emotions and his body and he needs mom or dad’s help to calm down.”
  3. Include your child in decision-making. For example, if it is their birthday, let them help decide how they might like their sibling with a disability to be involved or if they need some one-on-one time. 
  4. Normalize needs and emotions. Tell your child that we all have needs, they just have to be met in different ways. Emphasize that we all feel things like jealousy at different times and for different reasons.

Affirm that it is okay to express their needs, talk about their needs, and work together to find ways for everyone in the family to have their needs met.

 

Discussions with grandparents

 

Different generations sometimes have conflicting views on a variety of parenting matters, approaches to discipline, and the concept of disability.
  

The parent/grandparent relationship is an important one to nurture and support. It is worth putting effort into maintaining positive communication and healthy relationships.  


“When informing grandparents about the disability, the process would be much the same as talking with a sibling or your child themselves,” says Sandra.  


“Be honest, direct, provide facts, answer questions as they arise, and be as open as possible. Provide grandparents with handouts/articles to read, video clips to watch, or information you feel would be useful to help increase their understanding.”


It may be helpful to speak with grandparents about what your current goals are for your child. “Lately we have been working on…” Once they understand what you are working on, let them know how they can best participate. “You could really help us out by…”

Keep in mind that not every question needs an explanation or answer, you don’t need to defend every parenting decision you make, and it is okay to set boundaries with grandparents and adjust them as needed.


Discussions with strangers

 

It is difficult for parents to be in a public place and to have people react in a judgemental manner about their child with a disability or their parenting of their child.

 

“As a parent of a child with a disability, you are well within your rights to just ignore anyone who is giving you questionable looks or comments in a public  venue,” says Sandra.

 

However, there are a few phrases you can use that can be helpful:

  • “Thanks for understanding – my child finds public places difficult to manage.”
  • “Not our best day, but we’ll make it through!”
  • “Thanks for your opinion, but it’s not helpful right now.”
  • “You seem very curious. Do you have a specific question?”

Opening the dialogue about your child’s disability is an important step. These discussions shape the way your child will feel about themselves and how they present themselves to others as they grow.

 

Steps to explain a child’s diagnosis to them:

  1. Come to terms with the disability yourself.
  2. Start with a general discussion about differences, including strengths and challenges.
  3. Discuss their changing needs on a regular basis.
  4. Know when to stop talking and listen.
  5. Help your child become their own advocate.



For more information on parent and child supports, visit childrenslink.ca.

 

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