When your child is different, there’s so much more you need to learn about parenting. Your first priority would be to learn all you can about the diagnosis so you can understand and provide the necessary support, intervention, and/or therapy that they need to thrive – whether it’s by reading books, attending courses, or through community groups.

The learning never stops because children are constantly growing (physically, and in maturity). At times, it does get daunting when it seems like you have learnt all we can to a certain point, only to realise there’s more to uncover as your kid has passed a certain phase.

For parents with special-needs children, you may have wondered: how do you talk to your child about their disability? What would you tell them if they were to ask you about it? Here are some insights.

1. When is the right time?

Only you can answer that question, as you know your child best. In some instances, parents may speak early on about their child’s challenges in a matter-of-fact way around them. Consequently, the child would already have an awareness of being different.

Some might choose not to speak about their child’s disabilities in front of them. This is not wrong; personal preferences must be respected. Here, the parent might wait for their child to ask questions.

In short, there is no right or wrong time to have this conversation.

2. Language and understanding

Have a firm grasp of your child’s level of understanding when having this conversation, and use words and references that resonate with him or her. If it helps, speak to their teachers, therapists, other adults they may be close to, or even their siblings.

If your child is a visual learner, consider using social stories or books to help with the explanations.

Sometimes, children shield their parents from what they know so as not to upset them. Once you are aware of this, it gives you a better place to start the conversation.

3. Be honest and stick to the facts

It is natural to want to shield your children. However, there is more than one way for them to obtain the information they want. Since you are already equipped with knowledge about your child’s disability, use it to inform and educate them in a manner they can understand.

A good starting point would be by focusing on similarities. Explain that everyone is different in their own way, even though some have more challenges than others. This could lead to other conversations such as one’s identity (e.g. gender, religion, ethnicity).

Focusing on similarities also encourages inclusion, which is important. The last thing you want is to develop an “us versus them” mentality.

4. Acknowledge the challenges they have

While you strive for everyone to be included no matter their ability, you must help your children acknowledge and come to terms with the challenges they have which, in most cases, are life-long.

At the same time, use this opportunity to teach them to ask for what they need, which will encourage self-advocacy in the long run. Let them know that asking for help or support is not a sign of weakness. Needing support does not hold them back.

This would also be a good opportunity to explain that they (and everyone) are entitled to preferences; for instance, when an individual prefers to be referred to as “a person with autism” as opposed to “an autistic person”.

5. Talk about their strengths

Talking about their strengths is crucial, even though this does not necessarily mean highlighting what they can do and what others cannot.

Talk about things they have achieved, no matter how trivial it may seem. Remember, children struggle in ways you might not be able to understand.

Acknowledge things they have learnt in their unique way, whether it is something as simple as holding a pencil correctly, or a task that is more complex, like playing an instrument well. Recognise their strengths in a healthy way that does not promote comparison with something that someone else can’t do.

Also, remind them that everyone is unique. Having challenges or a disability is only one facet of who they are.

6. Expect difficult questions

“Why am I like this? Why is my sibling not like me? Is it my fault? Is it your fault?”

These are valid questions that could make you emotional or, in some cases, angry. Remember, though: this is about your child trying to make sense of what you just told them about their disability.

They may be processing the information, or have trouble understanding the emotions they feel during this conversation. Again, stick to the facts and validate their feelings.

Tell them you love them unconditionally, and talk about the various therapies or interventions they are attending. Ask them about their views regarding these therapies.

You must be prepared for any kind of response. Even if there’s a negative reply, allow them the space to share this with you. Remember, an unhappy experience does not mean the end of therapy – it probably means it’s time to explore other options and alternatives.

7. Encourage them to seek support

Seeking support is crucial, whether it is in the form of mental health practitioners, peers, other adults in the family, siblings, or the community.

Let your children know this is always an option for them. It is up to the parent to encourage this, because you must also admit you will not live forever.

Teaching your kids from a young age that support comes in many forms and isn’t taboo will give them the confidence to advocate for themselves in the long run.

What about their siblings?

Being a sibling to someone with special needs impacts them more, as they live in the same home and grow up together. It is, therefore, vital to recognise this as well. Here are some key considerations:

• Acknowledge that they have challenges, too, which are not trivial just because their sibling has special needs.
• Acknowledge their place of importance in the family, and reassure them that this will always remain.
• Encourage them to ask questions if they do not understand why their siblings are a certain way.
• Talk to them about advocacy and inclusion, which means more than just including someone in an activity, but also involves compromises for everyone to be included.
• Avoid pressuring them to advocate publicly. While they are part of the family, it does not automatically make them a spokesperson for their sibling.

If you find it difficult to have this conversation, it would be a good idea for you to seek support for yourself. Some of the best sources of information come from adults with disabilities themselves. Of course, be mindful of their lived experiences, or any trauma they may have experienced.

Other trustworthy sources include mental health professionals, therapists, special educators, and fellow caregivers.

Most importantly, remember that this conversation is not about you; it is about your child. There is no right or wrong way of doing this, but coming from a place of love and honesty with the best intentions usually works out.

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This article was written by Desiree Kaur for makchic, a Malaysian-based online site for chic, curious, and spirited parents that has been providing trustworthy and authentic family-related content since 2013. For diverse stories of parenthood that inform, support, and uplift all families, visit makchic.com and follow them on Instagram, Facebook and Twitter.