"Our whole family has special needs." This statement often raises eyebrows – after all, it’s our eldest son that was born with a brain malformation that has left him unable to walk or speak, and mentally impaired. Surely Travis is the one saddled with the “special needs” tag?
That’s the thing; raising a disabled child is a family business. We have had to structure our household and our lifestyle to accommodate his special needs. This affects each member of our family, including his eight-month-old baby brother Ryan.
Understanding their feelings too
It’s not unusual for a child who has a sibling with special needs to say: “I wish I had cerebral palsy, too!” Distressing as this can be for a parent to hear, what their child is really saying is: "I miss you. I wish you had more time for me.”
The feelings these siblings experience growing up range from resentment, to guilt that they were born healthy and whole, to embarrassment and fear that their classmates and peers will make fun of them. Despite having a brother or sister, they feel lonely and isolated by their family’s otherness.
On the flip side, it’s not unknown for these children to feel some sense of pride to have a disabled sibling – much in the same way that having twins is hard work, but it is something of a rarity and
so earns you a nod of respect from your community or peers.
In our own home, we too are anxious about what we’ll say when Ryan asks us: “Why does my big brother look funny? Why is he different from other kids?” We wondered, what is the right age to have this conversation with our able child?
Counselling psychologist Adele Wyburn explains: “As parents, we should always be mindful of where our children are at developmentally. Children are able to understand and process things better as they mature emotionally and cognitively. A child of four will not understand and feel the same way about their sibling’s intellectual or physical barriers as a child of 12 years would.”
Adele suggests that “the talk” should be a continuous discussion that should be addressed regularly.
Fair for all
How can we be fair, especially when it comes to discipline? Treat both your “normal” and not-so-normal children the same wherever possible, says Adele.
“The key to discipline is being consistent. Address behavioural issues as soon as they happen, so that the child is fully aware of what the indiscretion is. Consequences need to be meaningful, immediate and fair and must be consistently followed by the parent. If the parent is not disciplined in their follow-through of consequences, this shows the child that they do not need to do what is expected of them.”
For instance, if Ryan feels that Travis is getting away with things that he’d never be allowed to do, he’ll feel anger and resentment, and may even act out. As parents, we’d need to demonstrate that our family values apply to everyone under our roof – but due to Trav’s developmental delays, he has no concept of a naughty corner or time-out; what then?
“If you need to discipline your disabled child on an issue and cannot give the same consequence due to their disability, you can discuss this with both of the children, and give a consequence that your child is able to action, but where your able child is in a position of understanding that mom and dad still feel strongly about the issue,” says Adele.
When we get it wrong
When children compete for their parents’ attention, sibling rivalry can be expected. This happens in homes where there is a disabled sibling too. “I view these behaviours as communication: telling us as parents that they are feeling something like anger or sadness or loneliness. They may exercise their frustrations physically sometimes, by becoming aggressive,” says Adele.
“Remember, we have wisdom from years of experience in different situations. Your child of four, for example, has none of that and does not know better. We, as parents, may require a maturity from our able child that is unreasonable. Reflect on what your expectations of your child are and whether these are reasonable given your child’s age and maturity.”
Being a better person
There are positives to growing up with a disabled sibling. We hope that Ryan will naturally be a more compassionate person, having shared his childhood with Travis. But there could be more pros.
“A child learns from a very early age to become self-aware,” agrees Adele. “They can learn to be tolerant, open-minded, and find it easier to see past differences. “These children may also learn to be relatively independent and proactive, given that their home situation may have, in a positive manner, required them to assist with certain things.”
What about bullies?
As concerned as we are for Travis’s wellbeing, and managing his medical conditions as he grows older, we are just as concerned for Ryan and his psychological health. Our biggest fear is how he’ll deal with bullies.
Kids can be cruel, especially when your big brother is mentally disabled. How can we help Ryan cope with words like “retard” and “moron” being ung at him on the playground?
Adele believes that “talking and more talking” is the answer “Talk with your child about these issues, and not to your child,” she adds. “Encourage your child to talk about these incidents, and to be mindful of their feelings.
Reflect on what you see and hear – ‘I can see that this has made you feel really sad.’ In this way, you are helping your child identify his emotions. Normalise these feelings for your child, assuring him that we all feel that way sometimes and that it is okay.
“Then you can give your child suggestions on how best to handle the situation. Tell him about a time that you may have been taunted and how you handled it. You may have spoken to a friend or family member, written about it in a diary or punched a pillow, for instance.” The key here is consistency for everyone.