When our child is different, there’s so much more we need to learn about parenting. Our first go-to will be to learn all we can about the diagnosis. We learn everything we can, so we can understand and provide the necessary support, intervention or therapy that they need to thrive. Whether it’s by reading books, attending courses or through community groups, we learn what we can, when we can.
And the learning never stops because our children are constantly growing (physically, and in maturity). At times, it does get daunting when it seems like we have learnt all we can to a certain point, only to realise – there’s more to learn because our kid has passed that phase.
Lately, the question weighing on my mind is: how do I talk to my son about his disability? What do I tell him when he asks me? While my son is pre-verbal, I am confident he will communicate in his own way, and the question is heading in my direction in the not-too-distant future.
So, here I am again, at the start of learning another thing to help me on my journey as a parent. Whilst putting this piece together, I approached my trusted friends on this topic and gained some amazing insights. Here’s what I have come up with:
1. When is the right time?
Only you can answer that question, because you know your child best. In some instances, parents may already speak about their child’s challenges in a matter-of-fact manner around them. In this instance, the child would already have an awareness of being different. Some parents choose not to speak about their child’s disabilities in front of them. This is not wrong. Personal preferences must be respected. In this instance, the parent may decide to bring up the topic, or wait for their child to ask questions.
In short, there is no right or wrong time to have this conversation. Go with your gut and instincts. You know your child best.
2. Language and understanding
It is important to have firm grasp of your child’s level of understanding when having this conversation. Use words and references that your chid can resonate with. If it helps, speak to their teachers, therapists, any other adults they may be close to, or even their siblings.
Sometimes, our children shield us from what they know, so it does not upset us. Once you know this, it would give you a better place to start the conversation. If your child is a visual learner, consider using social stories or books to help with the explanations. Muhsin Kids has a great selection of books on diversity/ inclusion and emotional wellbeing.
3. Be honest and stick to the facts
Yes – as parents, we want to shield our children. However, there is more than one way for them to obtain the information they want. Since you are already equipped with everything you need to know about your child’s disability, use that knowledge now, and tell them in a way that they can understand.
A good starting point perhaps, is focusing on similarities. We are all humans, first. Everyone is different in their own way. Yes, some have more challenges than others. This would also bring up other conversations, like one’s identity (e.g. gender, race, religion, ethnicity and so forth). Focusing on similarities also encourages inclusion, which is so important. The last thing we want is to develop an “us vs them” mentality, and this conversation starts from home.
4. Acknowledge the challenges they have
This is so important. While we strive for community inclusion, for everyone to be included no matter their ability, we must help our children acknowledge and come to terms with the challenges they have. In most cases, these are life-long challenges. At the same time, use this opportunity to teach them to ask for what they need. This will encourage self-advocacy in the long run.
Let them know that asking for help or support is not a sign of weakness, but merely stating the facts. Needing support does not hold them back – hence, learning to ask for it is a good starting point for self-advocacy. This would also be a good opportunity to explain that they (and everyone) are entitled to preferences (e.g. when an individual prefers to be referred to as “a person with autism” vs “an autistic person”).
5. Talk about their strengths
While talking about challenges is important, talking about their strengths is equally as important. This does not necessarily mean highlighting what they can do, and what others cannot. This just encourages comparison.
Talk about things they have achieved, no matter how trivial it may seem. Remember – our children struggle in ways we sometimes can’t even imagine, or understand. Acknowledge things they have learnt in their unique way, whether it is something as simple as holding a pencil correctly, or something more complex, like playing an instrument well.
Acknowledge 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 from them. While these questions are likely to make us emotional or in some cases angry, remember, this is not about you. These questions are about your child trying to make sense about what you just told them about their disability. They may be processing their own feelings or have trouble understanding the emotions they feel during this conversation. Again, stick to facts that you already know and validate their feelings.
Let them know you love them unconditionally. Take this opportunity to relay to them about the various therapies or interventions they are attending. This could also be an excellent opportunity to ask about their views regarding the therapy or intervention they attend. Remember: you must be prepared for any kind of response. Even if there’s a negative response to therapy, allow the space to share this with you. Remember, a negative experience does not mean the end of therapy. It probably means: it’s time to explore options and alternatives.
7. Encourage them to seek support
Seeking support so important, whether it is in a 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. Sometimes, it is up to the parent to encourage this, because we must also admit that we will not be alive forever. Teaching our 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?
I recently wrote a piece about how to talk to kids about disabilities. A lot of the points from there are relevant to explain to a sibling about their brother or sister who is different from them. However, being a sibling to someone with special needs impacts them more, as they live in the same home and grow up together. Therefore, it is also important to acknowledge this to them 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 that it will always remain so.
- Encourage them to ask questions if they do not understand why their siblings are a certain way.
- Talk to them about advocacy and inclusion. Inclusion means more than just including someone in an activity, but also involves the necessary accommodations 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.
Always remember:
This is not an exhaustive list of considerations, and to come up with one would be near impossible. There are so many disabilities to consider – from visual, hearing, physical or neurological challenges. It is also important to seek support for yourself, if you find it difficult to have this conversation.
Some of the best sources of information come from adults with disabilities themselves. Of course, when engaging with adults, also be mindful of their lived experiences, or any trauma they may have experienced. Being mindful is so important. Other good 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. This conversation may just be one of the most important ones for you and your child. There is no right or wrong way of doing this. Coming from a place of love and honesty with the best intentions usually works out.
Happy World Autism Awareness Day 2022, #makchicmumtribe!
By Desiree Kaur
Desiree Kaur was in PR for over 8-years until she found her true calling in the education line. After her son was diagnosed with autism, she decided to pursue her Masters in Special Education. She enjoys writing and advocates inclusion for children of all abilities in every little way possible.
[Personal photos are from the writer’s own collection.]
