Our kind of normal

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I’m heartbroken. Not over a romantic relationship. I’m married and after twenty years our arguments are generally of the more mundane kind. Not the big old heartbreak, crying and wailing into the pillow kind. They ignite slowly. The way arguments in marriages do. Why has hubby stopped loading the dishwasher? Why is wife not instantly in the mood after kids are in bed? One of us knows we should stop but we don’t. We carry on jumping on the branch, willing it to break.

Then the branch snaps. Usually at 8.30pm on a Monday, the one-day of the week when no solace can be found in the half bottle of Pinot leftover on the kitchen bench. The wine got drank the night before and hubby says he’s going to bed. He’ll sleep and I’ll have a restless night and then the next morning one of us will say we’re sorry. We’ll hug, kiss and all will be okay again. No. My heartbreak hasn’t come from my marriage. My heartbreak has come from my eldest boy.

He doesn’t know he’s caused it. For him, it’s life as usual. A constant merry go round of school, handball, Pokémon, guitar, scooter, beach, school and more handball. But for my husband and I, the dreams we had for him, the moment we looked into his beautiful, I’ve been here before so don’t mess with me brown eyes, seem to have crumbled. We found out last November he’s on the Autism spectrum. High functioning – a mild to moderate case. The week after we found out, I lay on our bed and couldn’t move. I was weighted down by all I thought he would be, and all the things I now knew he wouldn’t.

We’re very lucky, I know. He isn’t sick. He goes to school. He sleeps. Things could be a lot worse. Since his diagnosis we’ve had all kinds of opinions. ‘It’s just a word, it doesn’t mean anything.’ ‘There doesn’t seem to be anything wrong with him.’ ‘Isn’t every kid a bit autistic these days?’ ‘I’m sure he’ll grown out of it.’ All these have been said by people not meaning to hurt and with our best intentions. But it still does.

He can participate in band and karate. He can make his own scrambled eggs and finishes 200 page novels in one night, but there are many things he struggles with and may continue to struggle with his whole life. His natural tendency to get angry and lash out in anger, his need to control every situation, to play by his rules, to not know when somebody is upset or needs help, or likes him or dislikes him. How he sometimes runs around making funny, strange noises and how this lack of control panics the hell out of us. His inability to relax or to hold a pen properly or write in a straight line. His lack of imagination, his lack of empathy and his fixation with saying the same thing again and again.

I used to worry about him not eating enough greens. Now, I don’t care if he never eats another bloody piece of broccoli again. My new worry is that he may never be able to have a relationship. That he may never fall in love. That he’ll always expect everything to go his way. My mind is full with scenarios of will he be able to look after himself? Hold down a job? Pay bills? Travel? Laugh with friends? Will he have any friends?

As somebody with too much empathy and way too much imagination, it hurts that I fail to see any of this in my own son. The past six months have been about learning to communicate with him in the way that works best for him. Not us. And our biggest lesson is we should have been doing this all along.

We’ve both struggled with the fact we have a kid who’s different. But what’s different? Albert Einstein said,

‘A question that sometimes drives me hazy: am I or are the others crazy?’

He may be the 1:100 whose brain is wired differently. But say it was the other way round? Say his way was the norm, and my big picture, over-loving, hate losing, heart on my sleeve brainio was alien to everybody around me. Just because he’s different to us, doesn’t mean there’s anything wrong with him. In 2001, Dr. Laurent Mottron wrote in the journal Nature,

‘Recent data and my own personal experience suggest it’s time to start thinking of autism as an advantage in some spheres, not a cross to bear.’

He went on to say that people on the spectrum have better memories, and often outperform others in non-verbal intelligence tests. Our experience of him certainly reflects this. He never gives up. He’s determined and 100% black and white. A trait of many successful people in business. A new character with autism has joined Sesame Street and there’s even an autistic Power Ranger called ‘Billy the Blue Ranger.’

Reading this has slightly allayed our fears but we’re also aware he’ll need us to be there for him his whole life. And this is okay. This is no different to any other parent and child. To my husband and I, he’s just who he was meant to be. He is our normal.

Sometimes when the worry feels like it’s going to overwhelm me, I turn the volume right up in the car and play ‘Firestarter’ by The Prodigy. Try it. A remedy I truly recommend. Also, it’s been a few months since I commented on the state of dishwasher. Could be the perfect time.

 

 

 

 

5 responses to “Our kind of normal”

  1. Oh Max. What a powerful and moving post 💙 You have so eloquently shared something that affects so many kids these days. Your precious son is as blessed to have two such loving parents as you are to have him in your lives. Much love, Shell. x

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  2. I just read your blog Maxine. Im moved, affected by it. Thank you for your candor, sharing your experience so openly and honestly. I have more respect than ever for you guys as a result of this read. I also now recognise that normalising autism is clearly unhelpful, guess its what we do when we’re not really very well equipped or ‘sure’ how to respond. Im now reflecting on that. Im processing how I might better react, offer support as a teacher, a coach, as an acquaitance and as a friend. Thanks for the awakening.

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  3. Hi Max – started reading this last week, got interrupted and finally got back to it. Thank you for sharing. We haven’t seen you all in ages but we love your little man. Hope to see you all soon. And always ready for a play! On his terms too.

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  4. Hi Max
    I’m also the mother of a high functioning Autistic son & nephew so can fully appreciate how you’re feeling.
    My nephew (diagnosed at 4years with his parents being told he was the “worst” specialists had seen) had trouble making friends & being bullied at primary school. At high school he excelled & was voted school captain by his piers. He’s now doing exceptionally well at university & has had a lovely girlfriend for several years. A remarkable young man in every way.
    My son is older, in a relationship, extremely happy, has a wonderful social life & successful in every way. He works for himself & earns exceptional money – so even though you worry now sometimes these high functioning children achieve great things later in life.
    being high functioning can be a blessing. 😀

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    1. Hi Chris,

      Thanks so much for responding. Your words have made me feel so much better. I really appreciate it. Thanks Max

      Like

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