Amongst families with a disabled child, siblings are hidden wonder workers. They can soothe their brother or sister as no one else can. They “keep an eye on them” while Mom cooks dinner or Dad runs out for groceries. They avert meltdowns, handle seizures, entertain, teach and console. They help their disabled sibling to participate in games, make friends and express themselves in groups. They speak on their behalf, fight for their rights and stand up for them against bullies. They are frequently so brave and so unselfish it’s hard to believe they are kids themselves.
For this very reason, they are also frequently unrecognised and unsung. If parents were to stop and think, they would immediately realize that they couldn’t manage with the help of their typical kids. But who gets the chance to stop and think? For most parents, life is a constant race to keep up. And if one child is disabled, the speed just doubles. They literally do not have time to notice the sibling’s helping hand.
That’s not good for anyone, least of all the sibling.
And so the idea of The Sibling Club was born.
The brain child of our own Psychologists and Counselors – or the Ps&Cs, as we call them – the Sibling Club (we still need a good name for it!) is an extension of the ongoing sibling support group. Mental health support is important for all family members and we have regular groups for mothers, fathers and grandparents too. But siblings are in a unique situation: they are the most likely to be overlooked and, in many ways, the most deeply affected by the disabled child’s situation.
Everyone else has known a life pre-disability. For the sibling, it is part and parcel of every moment of their growing up years and will, in all probability, be a part of their future too. Whether parents say it or not, the expectation is almost always there, unspoken and unacknowledged, that the sibling will pick up where they have to leave off. Parents agonise over it and try to make it as easy as possible in whatever ways they can, but the reality is that they have little choice. There are no other options.
Siblings live with this knowledge and, for the most part, remain silent about it too. They are often by nature sensitive to others’ feelings and recognise intuitively how much their parents are already coping with. They love their disabled sibling (for the most part – like any typical kids they have good and bad days too!) and recognise, probably better than anyone else, how difficult it is to be dependent on others. But they can’t help wishing things could be otherwise.
The great psychoanalyst Carl Jung said that the mark of a truly mature, integrated person is the ability to peacefully hold two conflicting beliefs at the same time. Most people don’t have to deal with such paradox until they are much older than our young siblings. But they live with it from the moment they can appreciate what is happening around them: They love their disabled sibling deeply and at the same time, they wish they’d never been born. Learning to live with both these truths is the work of a lifetime. It is not surprising that so many of them are “old souls” while still very young.
Our Ps&Cs are old souls too. Through their skillful, gentle probing, creating a safe environment where kids can open up and share their true thoughts and feelings, they are letting these special siblings know there is no such thing as a wrong feeling and that only when they acknowledge and accept how they do feel can they decide what to do about it.
I’m in awe of everyone involved in this magical program. The kids, of course. That goes without saying. But even more I salute the Ps&Cs for seeing the need for something different and putting their energy and hearts into creating it. This is how the world will be saved: by little and by little.