Saturday 20 October 2012

The hardest thing to say

Seven weeks ago Magteld was diagnosed with breast cancer. It was a shock that ruptured the fabric of our family all over again. The first examinations indicated a fibroademona, but she was given a hospital appointment just to make sure. The day of diagnosis was my birthday. We would go to the appointment, then head out for lunch to celebrate the lifting of the shroud of fear from our shoulders.

And then two women we’d never seen before came into the consultation room and delivered the devastating news. They were a cancer surgeon and a breast care nurse, and the tumour was anything but benign. At that moment the future disintegrated.

The surgeon warned us, among other things, to be wary of people peddling miracle cures on the internet. We smiled wearily and explained that we were already well aware of that pitfall because of the children’s autism. Nevertheless, one of the first dilemmas we faced was how to break the news to the children. There were books available on how to explain cancer to children of various ages, but not ones with communication difficulties. How would we know if the message had got through to them, and how would they respond?

When Magteld took to bed after the first round of chemotherapy the boys seemed unaffected at first. As long as someone was making the sandwiches all was well. We put a huge emphasis on maintaining as much of the old routine as possible. But this could only work up to a point. Magteld had to cancel a trip to Hamleys one Saturday because she was too tired to take the boys into town. We knew that if we couldn’t explain these unscheduled setbacks properly, we would only be storing up more trouble for ourselves.

I first tried explaining it to Adam as we walked to school. I told him mummy was very sick and would sometimes be tired, but he could help her by not disturbing her and doing things by himself like getting dressed for school.

As the weeks went by he became more difficult and agitated. His top lip went raw from his nervous habit of sucking it down into his mouth. In turn I grew irritated with him for being disruptive while his mother was lying in bed feeling wretched.

One morning he told Magteld not to bring him to school because she was sore. A little detective work by her brought out the revelation that he saw her as a different mummy. It was only then that I realised that he was rebelling against the cancer rather than his parents. He hated the fact that his mother was sick. He wanted her to be the strong person who was always able to pick him up. And so every time one of us mentioned her illness he would froth with anxiety. He was agitated and confused, like a fly trying to escape a room through a shut window. She explained to him that she was very sick but was taking medicine to get better. The change of emphasis, from illness to recovery, began to settle him. It became the backbone of our discussions about cancer.

With Euan acceptance was more gradual. I expected him to understand that his mum was seriously ill, but how would he deal with it? His school found some materials about cancer and I discovered a series of superhero comics about serious diseases that tied in neatly with his Batman obsession. But for a while he seemed to showed no interest in either the comics or his mum’s state.

Euan often responds better to sensory clues than verbal information, and so it proved here. The turning point came when Magteld’s hair started to fall out. Every night when he came home from school he would her take her hat off and rub her head. One night Euan came up to me one supper time and said ‘Mum’s not well’. It was hard to hear from him, but it was also a good sign that the message was filtering through.

The other day he asked her if her hair would come back when she was better. Euan rarely asks questions, so I took his curiosity as a sign that he was moving towards acceptance. Then he asked: ‘In April, when Mum’s better, can we go to Hamleys?’ The aborted trip had gained a kind of totemic status in his mind, a yardstick of his mother’s sickness. And perhaps perversely, it became the conduit for reassurance: the cancer was no longer a vast, shapeless threat that made his parents sad and angry, but the thing that had stopped him going to the toy shop. The promise of a deferred visit once the treatment was over reassured him on two fronts: he could concentrate on his mum getting better, and the disruption to his routine had a measurable end-date.

Then came the final breakthrough. The next day Euan took out his diary, where he plots the upcoming events in his life - birthdays, school holidays and respite dates – turned to April 1 and wrote: ‘Mummy get better.’ And under the following Saturday he wrote: ‘Go to Hamleys’.

The hardest thing to say has not been that Mummy has cancer, but that Mummy will take a long time to get better. Sickness in a child’s mind is meant to be a fleeting thing. Slowly they are coming to understand that it’s a process that will still be going on long after Christmas. It would, of course, have been a different story if her cancer had been more advanced, but those kinds of hypothetical worries are for adults, not children. The main lesson I’ve learned in these first weeks has been not to add to their burden by heaping all our adult fears about cancer on top of their own.

Euan asked me another question just before he opened his diary: ‘In April, when Mummy’s better, will everybody be happy?’ Answering that, I reckon, will involve a bit more fieldwork.


Ellen said...

I'm so sorry to hear this. But, in the midst of what must be a hellish time, your post is full of brightness about how to talk about these things with ASD kids.

Nicola King said...

It's never going to be easy, but once again, children help us to understand things from a different perspective, and your children particularly. I am thinking of you and your wife, and admire the way you are sharing your experiences immensely.

bonjen3 said...

I wish you and your family well

yvonne said...

he hoi, mooi neergeschreven en diep respect hoe jullie omgaan met de kanker maar vooral nog met de uitleg naar de jongens. maar zoals je zei is er nergens een boek te vinden hoe je deze jongens zoiets moet vertellen. wellicht een volgende uitdaging voor jou als schrijver om er een boek over te sxhrijven? heel veel liefs uit nederland. kusjes yvonne

Iain said...

Good work. Important.

Unknown said...

Thanks for sharing your experience I feel for your family and admire your strength you ate an inspirational couple. This made tears well in my eyes as I have a cousin with autism and lost 2 aunts to this cancer and my gran is a survivor do your story touched me so beautiful. I hope tour wife is well on her way to recovery and the boys are adjusting well beta everyday with their understanding of what is goin on. It's great the Drs got the cancer early and it isn't worse type. I wish youre wife a full and speedy recovery and will think about you and pray for you. This article really puts things into perspective.

Vikki said...

A really touching post. Sending lots of positive thoughts to you and your family!

Mark said...

Being the dad of a 4year old with a moderate ASD diagnosis, I often look to your blog for ideas and advice. That you can still find the time to share these thoughts and experiences is remarkable. From what I read on your blog, your two wonderful sons have two wonderful parents and all four of you provide such inspiration to all of us who have a loved one growing up with autism. Thank you