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Inspired living

A grandmother of two young boys with autism speaks from her heart


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How will I cope? Inwardly I shudder a little. It’s early morning and I have been tossing and turning all night worrying about how to get my three grandsons off to school. Two of them are autistic: Jay, 12, and Jimmy, 8. I have volunteered to look after them while their parents are away for two nights on a much-needed break. I aim to care for them often, and do, but it’s always a huge, ever-changing challenge.

In preparation, I took up meditation. I practise twice a day for 20 minutes in my own special quiet space at Home. It definitely helps me keep cool and calm. My partner and I also spend invaluable time beforehand discussing the best ways to help and care for our grandsons. We both agree that unlimited love and patience are the keys.

I know only too well that Jay will deliberately drag his feet and push me to the limit of my emotional endurance. Every morning he holds up the special school bus as he reluctantly trudges towards it. I feel really guilty but I don’t want Jay or Jimmy to miss their special school buses because it’s important for me to have a break. Looking after them all day is exhausting. I sometimes wonder how my son and his wife manage.

As his grandmother, I can see that the school social scene is vital for his development. Also, hopefully, the structured system will help modify his insistent obsessions; his endless fascination with birds and dinosaurs gets too much for us all.

As with many autistic children, Jimmy will only eat one thing at a time for months on end. Once he would only eat popcorn; now he has an obsession with pizza.

Jay is slouched on the sofa watching TV although his school bus will be here in 15 minutes. He is in a special class at a normal school. Like so many children on the spectrum, Jay can’t see any point in going to school.

Since he turned 12, Jay has suddenly become a large, awkward adolescent. “I don’t need deodorant,” he states, stamping his foot. “Dad told me to remind you,” I reply. “I will put it on after I’m dressed,” he acquiesces grudgingly. And grabs the spray can, holding his shirt out of the way of gluggy foam which oozes down the inside of his freshly pressed white shirt sleeve, leaving a dark stain.

“Remember your swimming bag, Jay,” I remind him. “You’ve already told me,” Jay snarls back. His teenage tone has become much more aggressive and catches me by surprise. But I keep cool, thanks to my meditation techniques. “Mum asked me to make sure you don’t forget it,” I reply as I check his school bag to make sure he has put in his lunchbox and homework. I’m not surprised to see that he has flung it all in willy-nilly and his lunchbox has burst open, spilling sandwiches, bananas and sultanas all over his school books.

If Jay does not eat a snack as well as eating lunch, he goes into complete meltdown: stamping his feet, shouting and throwing things around. It has taken a very long time to persuade him to eat a broader range of food. With patience and perseverance and some bribery, we have succeeded and he will now even eat fruit and drink vegetable juice. Food has been a strong determinant in his behaviour.

Meanwhile, I am wondering how I will also get Jimmy, a severely autistic 8-year-old, ready for his dedicated bus, which takes him to his special school. He’s still in his pyjamas and has not eaten breakfast yet. As with many autistic children, Jimmy will only eat one thing at a time for months on end. Once he would only eat popcorn; now he has an obsession with pizza to the exclusion of anything else.

As a grandmother I would love to see the boys eat a really nourishing diet. However, Jimmy has always been very small and thin for his age and at times would not eat anything at all, so we’re all relieved that he’s at least eating now.

When Jimmy has eaten his pizza he throws the crusts onto the dining room floor. Even at 8, he can’t yet get the message to put them back on the plate. Sometimes Jimmy feeds his pizza crusts to their pet chickens, laughing loudly as he does it. He loves his pets and we feel they’re a strong factor in his wellbeing.

Once again Jimmy is in his old action habit of OCD (obsessive compulsive disorder). A common trait in autistic people, which usually accompanies stress, he’s busy “putting away” whatever he can lay hands on. I grab my mobile phone just in time.

We have finally realised that the best way of easing Jimmy’s pent-up frustration and tension, which seem to cause his OCD, is by physical games such as wrestling, rolling on the floor and swinging him round. This also helps reduce his aggressive behaviour when he throws himself unexpectedly onto us, biting and pulling our hair. Bouncing on the trampoline soothes Jimmy, as does the Garden swing.

I heat some pizza and refill his much-loved tumbler, the only thing he’ll drink from. This is tricky as it can’t be replaced: the manufacturer has discontinued this particular style of tumbler with Bart Simpson on the lid. It’s really difficult for autistic children to switch over from the familiar object to the unfamiliar. Jimmy screams if he is offered anything else to drink from.

I notice 10-year-old Bill, who’s not on the autism spectrum, is dressed and ready for school and playing a computer game. When I ask him if he has everything he needs for school, he smiles and replies, “I’m all good, thanks.” Soon he gives me a big hug and a kiss and glides away on his bike. He gives me a wave and is gone.

It always worries me that Bill may feel neglected because his brothers take up so much more of my time and energy. I love his company and try to make up for it when he comes to stay during the school holidays. We go on outings to museums, galleries and coffee shops. We have lots of fun and relax together.

I remind Jay, now deeply engrossed in a computer game, that his bus will be here in five minutes. “You are not to come out to my bus,” he insists disagreeably. But, at the last minute, I see he’s forgotten his swimming gear so I have no choice but to run after him with his bag. I am relieved to wave his bus goodbye and, since Jimmy has also left, can finally relax.

When all is said and done, I remind myself that the most important thing is to continually be patient, loving and compassionate.