What to say to the parents of special needs children
I was born and raised in a country with a warm climate, and as fate would have it, the beautiful woman who became my wife didn’t. To speed this along, I found myself moving pretty much to the other side of the planet to a new country, with a new climate and a new language to learn.
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The only job I could get before I could converse in this new language was to go and work with violent, self destructive autistics. It was the best job in the world- I was lucky enough to work for one of the most charming and spiritual people I have ever, and possibly will ever, meet. Of course there were bad times (when over a period of a few months he bit his tongue off) as well as good times (when he some how managed to communicate his appreciation for the help and assistance we gave him over and above his sever autistic limitations) and it was during these good periods of his life that I began to have these dreams.
I remember that I dreamt the same dream seven or eight times. I could never remember the specifics, but the theme was always unmistakable. I was working with the guy as some sort of training as I was going to have an autistic child of my own.
During this time of the re-occurring dreams my wife fell pregnant with our first born son, who I refer to as Hurricane One with the masses. Normal birth followed by a normal upbringing until we took him for his two year health check up. I asked the nurse about his speech- or lack of it- and was told that the delay was quite normal due to the fact that I spoke one language to him and his mother another. It wasn't until we were back in my home country, seeing a doctor within the health system there, that the penny dropped. Two months later he had his diagnosis- he was autistic.
Not long after Hurricane One became an elder brother to, naturally enough, Hurricane Two. Another routine birth and upbringing. After experiencing the same lack of speech development we took him to the specialist, and not long before his second birthday he also received his autism diagnosis. Two Hurricanes, two autistics. Why is that?
The question why is that is very different to the question why me. Academia says that autism is a hereditary condition, which has some merit as my wife has an acutely autistic brother. Online forums suggest that autism is a result of immunization, which also has some merit as Hurricane One's autistic behaviours increased markedly after his year two shots. But was this an evidence-in-fact or was it just a co-incidence? I don't now. Nor do I really care. Maybe the spiritual explanation is the best- that the souls of both my sons performed unimaginable acts of service in their pre-life experiences together, and that in order for them to remain brothers in this life they were given bodies requiring special needs...
I am very fortunate that I have never been angry enough to ask the why me question. That's because such a question is futile. The unfortunate thing is that I have met many other parents of specials needs children who, even after five years, still torment themselves with this question. Is this some sort of punishment? No, you didn't. Did I smoke too much weed and drop one too many acid trips in university? Well, you probably did but that's not why you now have special needs children. So what did I do wrong?
In my experiences it is the spiritual answer that has had the most lasting effects. Maybe it's not a case of what you did wrong but what right was done to you. Maybe you were the principle recipient of the unimaginable good works that you special needs child performed for you in your previous lives. Maybe you chose to be their parent in this life as a return act of selfless gratitude. Or maybe I am wrong, but in my experience it has the most powerful effect in explaining why we have special needs children to parents overwhelmed by their situation.. And unless you are a neuroscientist, it is definitely the easiest.
So how can this apply to nurses, or health care workers who through their occupations are sometimes in contact with special needs children? As one of those parents, you provide us a great disservice if you show us pity. Of course it is easiest to say what we want to hear- that you are very sorry for our situations- but in the long term it is more of a hindrance than a help. What we want to hear is different to what we need to hear.
The best thing to say if you ever find yourself in a situation where a parent is coming to terms with the fact that they have a special needs child is to say something like this: 'Wow, you must be a very strong person on the inside...' When they look at you with that puzzled look on their faces, continue with something like, 'special needs children aren't given to just anyone...'
Variations of these two sentences have the power to change the very attitudes of parents with special needs children, especially if they are told this soon after diagnosis. It creates strength where pity and guilt once stood, and provides a totally new and positive direction for parents to focus on, right when they need it the most.
