I have mentioned in a previous post that John used to find it very difficult to cope in supermarkets or small convenience stores with noisy fridges and flickering strip lights. His hearing and his eyesight are very sensitive therefore shopping was always a torture for John and an ordeal for me.
I don’t know who cried more at times, me with frustration at not being able to do the normal things most people take for granted, or John because his mum would insist on jamming him into a shopping trolley twice a week and pushing him around the ‘big shop’ as he called it, whilst she sang nursery rhymes at the top of her voice hoping to drown out the fridges. John would have his fingers in his ears, screaming the place down with anxiety, or maybe my choice of song, who knows? I would be both singing and crying at the same time. Such fun.
Arriving home after one particular harrowing shopping trip my lovely neighbour Margaret could see by the look on my face that things had obviously been a bit of a struggle. Margaret had been a health professional all her working life and spent many years as a lecturer in Nursery Nursing. I explained that shopping was virtually impossible and told her how torturous it was for John and how anxious it made him. I felt ashamed at my inability to do the simplest things.
She asked me why I didn’t just leave him in the car with the deadlock on, where he would be safe and happy in his booster seat listening to his tapes. She pointed out that the disabled bays were also right at the entrance to the store.
She helped me realise that while in the ‘Normal’ world we are discouraged from leaving our children in the car, sometimes not everyone fits into that lovely, normal, perfect world. John’s world was one of fear and confusion, therefore I had to make my own rules. ‘Whatever works for you and John’ she said, giving me a hug.
This was one of the best pieces of advice I have ever been given and I often find myself sharing it with other families who are struggling with young autistic children.
‘Find what works for you’
I can never thank Margaret enough for her wisdom, and for her cakes.
The following week I took John to the supermarket, parked in the first disabled bay next to the doors and piled him high with his favourite musical toys and his tape. He was suspicious and immediately put his fingers in his ears. I took them out again so he could hear me.
I explained that this time mummy would not be taking him into the ‘big shop’ but that he was going to stay in his car and play for five minutes, I held up five fingers and counted them out…1 2 3 4 5. He then counted them out 1 2 5…. ok so he had a way to go with his maths.
However he clearly didn’t believe me about not being made to go into the shop so he started screaming.
I gently took his face in my hands to make him look at me. ‘John, no big shop.ok’ I said louder than I wanted to but he was deafening me.
He shook his head ‘No big shop?’
I nodded ‘No big shop John’
‘Car?’ asked John, he wasn’t much of a conversationalist at this age.
I nodded again ‘ yes, you stay in the car John’
‘Sweets, cake’ replied John starting to push his luck.
‘Sweets yes, cake no’ I laughed in reply.
‘Bye bye’ said John followed by ‘Door’ to let me know our conversation was over and that he had important stuff to do with his mobiles and tape.
I stood watching him from the big automatic doors with my heart in my mouth, it felt all wrong. John on the other hand was contentedly playing and jigging in his seat. I went in feeling like the worst mother on the planet. No harm could come to him, I kept telling myself. The windows only come down a fraction so he couldn’t get out. I would be very quick. He is happy and calm and thats what matters. What could possibly go wrong? What indeed.
All these thoughts were going around in my head as I whizzed up and down the aisles at breakneck speed as if I was on Supermarket Sweep. Dale Winton would have been very impressed.
As I was walking back out of the store I noticed a shoe by the front doors that looked a bit like John’s, what a coincidence. The further I got out into the car park I saw various other familiar looking items of clothing strewn about. I walked towards my my car with a sick feeling in my stomach, there was a small crowd standing by the window. I was convinced somebody had got in the car and killed my boy because I had neglected him and left him vulnerable and alone. I was sobbing as I pushed people out of the way, nodding as voices asked me if it was my car, my son. ‘Yes’ I wailed ‘Yes’ as I imagined tomorrows headlines. AUTISTIC BOY MURDERED BECAUSE SELFISH MOTHER LOCKED HIM IN CAR.
John was kneeling in his car seat, belt undone and stark naked. He had posted his clothes, well most of them, out of the window and was singing along to his tape, clapping his hands and bouncing up and down.
When he spotted me he stood up pointing to his naked bottom, and just incase I couldn’t tell that he didn’t have any clothes on, he shouted ‘Bum!’