We have a disabled son who has unusual facial features, pokes his tongue out a lot, can’t stand or walk and is on oxygen 24/7. He is clearly different.
There is a variety of interactions you get from having a disabled child. When walking down the street and around the park to going shopping or picking up our other children from nursery.
The obvious ones are the double-take. I get it. He is different; it is natural for our brain to double-check anything that triggers our curiosity. The only real issue I have is not smiling or acknowledging he is different.
I call this the double-take and ignore.
There is also the double-take and pitying look, ‘poor child’. Please don’t feel pity for us, and we are just fine. We have had our minds and lives opened in ways that many people can only dream of. I have always said whatever happens from here on in, we have become better and brighter people for it. And more importantly, our son is fine. Of course, if we were given the option of taking any pain and traumas away from him, of course, we would. But he has everything he needs, and he gets great joy from life.
The best one, The double-take and smile, is normal behaviour for any adult to child interactions. Whether they are disabled, being cheeky, having fun, and laughing with their friends, even if they are naughty most people smile to hide their dissatisfaction, not so easy with disabilities. I understand it may not come naturally to some people, but please take a split second to make your mouth smile, and it becomes so much easier for both parties.
In all honesty, I had trouble with this one; I have never directly come across disabilities in my life. There was a class at school who had special needs, but the interactions were far and few between, and no one taught us that this was normal, and a lot of people have disabilities that you can see or not.
Going the other way is always interesting.
We have met absolutely incredible people on our journeys. Most notably on the train to London for our regular hospital visits. Admittedly I am an introvert, and before getting on that train, I always have to take a breather as I don’t enjoy vast amounts of people. I am a lot better one to one or in small groups. However, I have actually embraced our son meeting new people on the train or in shops. They are the honest, welcoming kind, who no doubt have a story of their own to tell, and I can say I would love to hear their stories at another time or another place.
On a couple of occasions, they have gone a little too far for my comprehension. For example, during the pandemic’s height, no less, one man went about holding his hand and telling us that he would pray for our son to get better and wished him well in our future. Well, within our 2 metres but we kindly said thank you and escorted our son away with lots of smiles and thank yous.
. . .
I don’t know how you do it.
This may well be the best-intentioned sentence people say to us, yet the people who have told it to us make it hurt the most.
Firstly it is a compliment, and you act graciously. Then we have found that it fills you with confidence, suggesting that someone else may have failed in doing what we have to deal with. But eventually, it confirms the truth that the people who have said these words to us don’t have a clue about what we have to deal with. For if they did, they would totally understand how we do it. We deal with it by having an unquestionably strong relationship, where we have had to talk about the grimmest, most morbid situations you can imagine. We are fairly open about our lives’ realities and how it affects our other children and us. And where we can also laugh and see the funny side in most situations.
For example, after the first time, our son had to be resuscitated, absolutely horrific time, we were both called, when at work, by his fantastic carer at the time. I rushed home to grab some bits he needed. And I saw the scene of our lounge when they had left in the ambulance. It was nothing too far out of the ordinary, some soiled clothes, a blanket and cushions all on the floor. As he was resuscitated on the sofa, but I could have imagined the chaos not half an hour before, you could almost still sense it in the room, and the look on our dogs face told a story in itself.
When I got to the hospital and got directed to the resuscitation area, I was greeted by my smiling and laughing son and what looked like the finalists from a Miss World and Mister World beauty pageant. I embraced his carer, and after a few minutes, my wife walks in. She has what must have been the same face on as me when I walked in. One of total shock that our son is sitting up, playing and laughing, having almost died an hour ago by now. But then the second expression of wow, what a terrific looking bunch of doctors and nurses we have here. It didn’t take long for our carer to raise this point either as he, my wife and I discussed the events later and shed tears of laughter and sadness.
You have to have a sense of humour in those situations and see the funny side in how contrasting those two fleeting emotions were and how overwhelming the relief was.
. . .
From now on in your day to day life, I encourage you to smile, wave and even say hello to a disabled person. They aren’t going to bite your ear off or start trying to hug and kiss you. And even if they did, you should take it as a compliment.
As a truly introverted person, this whole experience has made me come out of my shell and be part of situations that I hadn’t dared to even dream of. It was honestly terrifying to get involved in developmental classes and special needs groups, surrounded by other children and their parents. Still, once I saw these people for what they are, which is the same as me. Just trying to get through life with the cards they have been dealt it is a lot easier to comprehend.
. . .
To clarify, there is nothing wrong with the way 99% of the people interact with our son, and this is more to highlight the way we see these interactions daily and inform you and give you the confidence to realise that disabled people might look different, we are all human at the end of the day. There is something wrong with all of us in our own special way.
This post was previously published on Medium.
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