0

Autism Every Day Part 1

Autism Every Day – Autism Speaks This is a 13-minute film on Autism. It caused outrage within the Autistic community. Parents, families, friends roared disapproval. But Autism Speaks has never taken it down.

I’ll try to be as objective as I can be.

1. It’s wrong that the video surrounds only mums. There are fathers that live with autism every day. To assume that they go through anything less than mums do would be heresy. The ‘documentary’ should have included fathers as well. I know from my own family that my dad has dedicated his life to my brother. We have all dedicated our lives to him. We all have a special bond with him and father, just like mothers, are angelic.

2. To the mum with 3 autistic children: You are a superhero.

3. Quitting their jobs to care for their children seems like a pattern. While I believe that is a noble and extraordinary cause, it would be wrong to assume that every parent with an autistic child has to give up their job to care for them effectively. My parents both have full time jobs; he has never wanted for anything, not for tangible things not for intangible. It is possible to do both. That doesn’t apply to everyone; there are cases of autism that require your undivided attention, day and night, 24/7. The women in the video aren’t resentful for leaving their jobs, they just understand that their children are more important than a job. And if they require their constant care, wouldn’t you give everything up for your child? I sympathise completely with their position because no one will ever be good enough to care for your child. No one knows them the way we do, understands their language, their needs, what each noise means. Its terrifying leaving them with a stranger.

4. The siblings of autism are not ‘unsung heroes’. Yes, there is overshadowing, we are forced to grow up much faster than we should; is that a bad thing? Autism makes us strong, it makes us step up and face challenges, it helps us grow into thoughtful, considerate, powerful, motivated individuals. We realise this once we are mature enough, and we gladly stand in line to be the next person to take over and become their caretaker. Autism is our life. Anyone who says they never got annoyed is lying. He used to break my dolls, my dollhouses, he ruined every single cassette i had and drew on my clothes. He broke all my game boys, he kept me up for nights on end. I could never watch what i wanted, or listen to what i wanted. But i adore him. He annoyed me, but without him i wouldn’t be who i am today. I wouldn’t have dreams that scare me so much they keep me up at night. I wouldn’t push myself to be the best i can in everything i do. Because i know that one day everything I have will be his, and i want him to have everything.

5. I don’t agree with not being able to maintain friendships with people who don’t have autistic children. Maybe we are the luckiest family in the world but our family and friends are extraordinary. They accept us. They buy his favourite food when they know we are coming over, they usually already have food ready for him. We are blessed with compassionate people who understand us and are by our side when we need them. But i understand how you exclude yourself from certain situations, and if your friends can’t comprehend what you are going through then you turn to people that do. Your child’s comfort is paramount, and you gladly turn your life upside down to facilitate that.

6. ‘Yes, in another life I’d love to go for a bagel’. But the reality is that going out for food, at the park, for coffee is a luxury for families that  live with autism. Again, we have different responsibilities, we need to be one step ahead all the time. We are in a state of constant alert, because if we are not, they suffer, they get left behind. A parent of autism is always fully aware, they are dedicating all of their spare time to autism; therapies, making up schedules, practicing what they learned that day because that’s what we want.

Running scared:

If I had a penny for very time Chris ran away from us. He is more aware now, but there are still moments of panic. We’ve all been there, there’s nothing you can do to prevent it, it just happens. If they wander off and you call their name, they don’t reply. We can’t call them or text them to see where they are. When they see something, they don’t look at traffic. There’s a moment – when you first feel their hand slip out of yours and their energy kind of rockets them in a direction – when everything moves in slow motion. You are helpless, no matter how loud you scream; all that matters is if you can outrun them before they hurt themselves. It’s that instinct you get to protect them with no regard of your own safety. That moment where your life becomes empty until you find them again. If you say this has never happened to you, you’re lying.

Can’t you just: – I feel I’ve answered this in my previous post.

Teach your children well:

It’s true, even if you’re an educator, you cant apply the same tactics to autistic children. They will not do something they don’t want to do. I cant even count the times I begged Chris to do a puzzle with me and he just wouldn’t do it. Then a couple of months later he would come to me with the puzzle and want me to sit with him and put it together. The solution to this – and i know it sounds harsh – is to ignore it. Once you take the pressure off them, and not yield to their screaming and shouting, just sit there and do the activity by yourself and they will come to you. The times this has worked for us and Chris are unimaginable. Their characters are unyielding; they will do what they want when they want. I used to buy him dvds of films he loved, films he would watch 2-3 times a day and when he got the dvd he wouldn’t even let us take it out of the box. Once I gave up and let go, he would come to me and randomly mention it and we would watch it. I’m not saying don’t push, push as hard as you can as often as you can. But in rare instances, taking the pressure off works too.

Now, the most controversial part of this video comes when one of the mums admits she contemplated driving herself and her autistic daughter off a bridge BECAUSE that was preferable than having her daughter go to a public school, where she would be bullied, abused, lost, and ignored. Let me just put it out there – that was horrific to watch/hear. It was wrong, it was inconsiderate to say that while she was there, every single comment people made about that moment in the video i completely and utterly agree with.

BUT.

We, as part of the autistic society, know how hard it is to live with autism. There are days/nights when you think you cannot do this anymore. Our life is insane. We have all been there and we have all overcome it. It’s like when new mums don’t admit that they get annoyed at their newborn crying all night because its wrong. It’s not wrong, its human. When you reach this emotional threshold – because you do – you need to take a step back. You need to distance yourself. It’s not wrong, it’s not cruel. It’s the best thing to do for you and your child. 10 minutes – an hour, and it all goes away. How many times have you found yourself crying out of frustration? How many times have you felt crippling, overwhelming anger and felt helpless? It’s not wrong to admit it, you have to, it makes you a better person, it makes you a better parent. Even the strongest have their weak moments. Even the strongest need a kit kat.

It is because of the consuming love that we have for our autistic kids that our emotions run so high. In moments of anger my dad and I have yelled at people, teachers, strangers, I threw a basketball in my cousins face, I spat on another one. Shocking no? It’s a instant reaction to protecting your own, it’s over the top but that’s what happens when you live with autism. You’re over the top, all the time. We need to understand that she didn’t say it because she hates her daughter, she said it because the thought of her being left behind in a school that would definitely consume her was unbearable; I know that feeling, your heart breaks over and over again. Like the other two moms said ‘I can never die’ ‘Nothing can even happen to me’ ‘I have to live forever’. She said it because she would rather die than have her daughter be bullied. We need to understand that she meant it that way, not in a ‘I hate my child and want to kill her’ way. My parents have said to me a dozen times how they would die for me, they would die if it meant me living a long, happy healthy life. Again – over the top. But have you never, for a second, thought that you would do the same for your kid?

I remember being also being terrified of the phone ringing and it being Chris’ school. The anger I feel when i think of the possibility of him being bullied is beyond imagination. I would do ANYTHING to keep him safe. Because as a strong, proud parent of autism your love can conquer the world, it can move mountains, your passion has no ending, you are an object immovable despite anything life throws your way, you fear nothing; except your own mortality.

And I know you feel it too.