Special needs: What about the other sibling?

When you welcome your special needs child, you are embarking on a long road that includes times of struggle, times of victory, times of rebellion and times of acceptance, writes Margot Bertelsmann

A CHILD WITH a physical or mental disability colours your family forever.

It is a road that is filled with ups and down, lots of hardships as well as joys. However, for some parents, the special needs road becomes a one-way autobahn. It takes up all their focus.

Their typically developing children (that’s the politically correct term) become the road less travelled. And that way contains potholes. Because, you guessed it, being a sibling of a child with special needs is a pretty unique situation all of its own.

YOUR NEW NORMAL

It’s a fallacy to say that your normally developing child is a normally developing child. Labels like that fail to describe the uniqueness of every human being.

“Typical”, as the cliché goes, is a setting on a washing machine. You’re never just “normal”, you are the set of characteristics and life experience that makes you, you.

What’s more, your family is not “typically developing”. It can be helpful to think of yourselves as a special needs family. Your typically developing children are siblings of special needs children, and that is an interesting, complicated part of their life experience. Do not try for a “normal” life.

There’s no such thing. And part of making peace with a particular disability is making peace with its impact on your whole family.

Your family may look very far from “normal”, with caregivers in your home feeding and clothing your disabled child. Or you may regularly split the parenting duties (Dad with the special needs child, Mom with the rest, and vice versa), so that you rarely all go out on outings together (because the child’s disability doesn’t allow for it).

There is, however, a very wide range of family types and styles that we all get to know about because social media and the global village allows us to peep inside the internal lives of others more than ever before.

FAIR DOESN’T EQUAL EQUAL

Depending on the severity of your special needs child’s disability, he or she requires more of your time and energy, whether this means trips to specialists and medical interventions, hospital stays, academic help, or assistance with mobility and bodily care. It can be exhausting, overwhelming, expensive – and even disheartening.

Many parents add to their own psychological burdens by then feeling guilty about not being able to give as much attention to their typically developing child as they would like.

But this is a trap.

Yes, your typically developing child may mind, especially during periods of transition where they may be extra needy themselves. Typically developing children sometimes feel overlooked, like their struggles aren’t important enough, and they may rightly feel a lot of sibling rivalry and envy. But it’s not all bad:

having a sibling with special needs also makes the other siblings more empathetic, responsible and resilient.

You shouldn’t aim to give each of your children an equal share of yourself. Karl Marx said we should take “from each according to his ability (and give) to each according to his needs” when he was imagining an alternative and fairer society. With special needs (the clue is in the name!) there’s not enough of you to go around for all the extras you need to provide. It puts a lot less pressure on yourself if you aim, instead, to provide for each child according to their needs. And no, that doesn’t mean overlooking your typically developing child.

OVERLOADING YOUR CHILDREN

Different family and cultural values will determine to what extent you expect your children to care for their special needs sibling. They may easily become used to always being the child who must carry the groceries in if their sister is in a wheelchair, for instance, or the person who must translate the world into sign language or into audio descriptions for a deaf or blind sibling. Still, try to ensure that you ask your disabled child to contribute in ways that he or she is able to.

Be creative when you assign chores, and try to make sure nobody gets a free pass. Children, like adults, are sensitive to being taken advantage of, and they’ll soon let you know if something is not equitable.

CAPE-FREE ZONE

Brothers or sisters of children with special needs are not heroes or saints – and neither are their special needs siblings! They are siblings who live together every day, and this means they will bicker, argue and fight like any other siblings. They will feel irritation and jealousy, as well as loyalty and love. Like all of us, they are just trying to get through their day, most days. So siblings who help their special needs sibs do not need exuberant praise and medals with their tea.

Special needs children can be embarrassing to their siblings: they might behave in socially awkward ways (if they have a condition such as autism or Down syndrome), or they might miss social cues (if one or their senses is impaired) or even cause mortification if they can’t control their bodily functions. Teach your children that it is okay to feel any feeling, but it is not okay to punish your sibling for something they can’t help. Practise a series of responses with your typically developing child over the years, such as walking away when embarrassed, explaining your sibling’s behaviour to the outsider, or taking your sibling away from the situation.

The child with special needs will have strong feelings about their disability too, about how their family treats them, and about how the world treats them. Sometimes they will be angry. This is normal. It is even normal for them to be angry at their sibling because the sibling seems to have an easier time in life.

However, it is not okay for your special needs child to abuse their siblings, and if you feel this is becoming the case, consider taking your special needs child for counselling.

There are a few other strategies you can employ in your home to minimise any unhappiness caused by the presence of special needs in your family:

Talk honestly When you live with a diagnosis or condition, it is best not to obscure it. If you name and explore a thing, it makes it a lot less scary and increases everyone’s levels of knowledge and, by extension, empathy. Win-win. Encourage children who are feeling hard done by to speak up about it, too. Sometimes, it’s as simple as letting Mom know you need a trip to the milkshake shop with just her and without your annoying sibling around.

Employ your sense of humour What doesn’t kill you makes you funnier, the saying goes. All of you are in for quite a ride, with messy emotions and difficult interactions with uncomprehending

(if well-meaning) family as well as strangers pretty much a given.

It’s going to happen; it’s better if you can shrug it off, together. Humour is a wonderful tool for putting things in perspective, for releasing feel-good endorphins, and for uniting your family against a common enemy.

Families with special needs are not special. They can be as messy, loving, chaotic, fraught, confusing and hilarious or – sadly – dysfunctional as anyone else’s can.

But with a generous dollop of love, your special needs family really can become quite remarkable. Good luck!

HAVING A SIBLING WITH SPECIAL NEEDS ALSO MAKES THE OTHER SIBLINGS MORE EMPATHETIC, RESPONSIBLE AND RESILIENT