The book and movie Wonder introduced us to Auggie Pullman, a child with Treacher Collins Syndrome who, for the first time, enrolls in a school at the age of ten. Wonder explores several aspects associated with Auggie’s experience of standing out among his peers by way of his looks and his health–what does it mean for him to be in a school where the other children are curious about him, often asking questions about his facial deformity, or talking amongst themselves about him? Does he think he can cope? How does he feel about being the 'odd one out'?
A large part of the story is also about how his parents cope with this transition–how do you send out a child to school, knowing he is very likely to be singled out? Do you worry he will be bullied? How do you deal with it? How do you try and create a supportive atmosphere for him, and how do you respond when the world is harsh towards him?
If you're a parent to a child with a disability or a developmental disorder, you may be familiar with these concerns.
Parenting a child with disability often comes with multiple emotional challenges. We spoke to psychiatrist Dr Ashlesha Bagadia, psychologist Dr Nithya Poornima and counselor Gayitri Bhatt to understand how parents can deal with the situation.
It’s important to deal with your own grief: Coming to terms with your child’s disability or disorder will help you support your child in facing their challenges. If you need support, reach out to a counselor or a mental health professional.
Help them build skills: Explore what you can do to the environment at home to create inclusion and help them be independent. Keeping their books, toys and personal belongings in an accessible place so they can reach them on their own; creating a space at the dining table so they can sit with the family for their meals. You can read more about this here.
When creating a task or activity, make sure that the activity is suited to their level of capability and also has some element of challenge in it. Let them know that they can ask for your support should they need it.
Responding to your child when they say they feel 'different': When the child brings up their sense of being different or excluded, your first instinct may be to tell them that you love them just the way you are, or that they have other strengths that those around them may not be seeing. Instead, validate your child’s distress by acknowledging their feelings: “I see that this is challenging for you.”
Remember that validating your child’s distress doesn’t necessarily mean you have to fix it–you’re just telling them that you see what they’re experiencing. Encourage them to speak about how they’re feeling. Following this, you can try to figure out how to tackle the problem the child is facing. Involve the child as much as possible in figuring out a solution that works for them.
Listen to non-verbal cues: Children who aren’t able to express themselves or don’t feel comfortable doing so may share their sadness, anger or frustration in other ways–sulking, getting angry, or acting out. Watch out for these and try to understand if there’s something underlying the child’s uncharacteristic behavior.
Equip them to care for themselves: As your child grows older, assess what they are able to do and help them gain certain skills. This could be initiated in small ways - when they are younger, by helping them learn to groom themselves; children who are slightly older can learn to go to the market or make choices. Children can also benefit greatly from being supported to get aware of their feelings, talking about them and dealing with them. Children in late teens and adulthood can be taught to manage finances, a skill that can help them in their later years.
Help the child know they are valued: As a family, you can do things that help the child know that they are valued. Spend quality time with them. Appreciate their achievements and qualities. Include them in important discussions and decisions like family holidays and or planning weeken activities.
Recognize that it isn’t easy: Children with a disability or a developmental disorder often need more physical support than other children of their age. This is more challenging and can be emotionally stressful for you as the parent; you may feel exhausted, angry or tired. Find some me-time to de-stress and take care of your own needs. Being part of a support group, whether online or offline, can also help.