I would like to say a big thank you to my lovely, brave friend Sam, who has given me permission to write about what happened to Emma-Jane in the hope that it will make everyone who works with, and cares for, an autistic child be that extra bit vigilant in their watch over him or her.
I sit and write this section whilst choking back tears. It is not easy to write but it is important that as many people as possible are made aware of what can happen to our very special children, and just how important it is to watch over them and keep them safe.
When Ben first attended the Child Development Centre as a tiny, immobile baby, parents were given the opportunity to sit and have coffee and leave their children to play with the toys whilst they chatted to other parents. Ben however made that difficult. He screamed incessantly and so I spent the majority of my time rocking him backwards and forwards in a bid to quieten him and give other parents and myself some peace. Other parents were sympathetic but Ben made far more noise than the other children.. .except for one little girl. She sat with flaming red cheeks and gave Ben a good run for his money! Her mother and I got chatting amidst the howls and screams of Ben and Emma-Jane and we became good friends.
As Sam, Emma-Jane's mum, underwent the early difficulties of gaining a diagnosis that so many of us parents are familiar with, she fought on in her indomitable way. Fairly early on in Emma-Jane's life, she was diagnosed with a rare genetic disorder, a ring 8 chromosome, that manifested itselfas severe autism. Meanwhile, Ben and I had been going through our own diagnostic process, the result of which you have already read about. Sam and I went everywhere together with our two little blond cherubs in tow. The children attended various therapies together, went to nursery groups together - in fact they were like twins in many ways, or opposite sides of the same coin. So different yet so alike, Ben and Emma-Jane had an inexplicable bond - in their own silent little worlds they seemed to have some unspoken affinity.
Actually maybe silent isn't the correct way to describe Emma-Jane. She may not have been able to speak but boy could she make a noise! Emma-Jane was the noisiest child around. She banged her drums and shouted loudly, she clapped toy cymbals together and charged around the room stamping her feet. Ben on the other hand spent his time hiding under a chair with his fingers in his ears. Before Emma-Jane performed her repertoire of noise and chaos, she often carefully walked Ben over to a seat and pushed him to sit down as if to say, "You stay there in case I knock you over".
Many times we both attended a Portage 'stay and play' session or a nursery session at the Child Development Centre and whilst Emma-Jane banged around and was physically so active, Ben crawled around trying to shield himself from her noise. In many other ways though, Emma-Jane and Ben were so similar. When we returned home, we would enter my house and immediately Emma-Jane would do her usual routine of running to touch the television and back to touch the sofa before stripping off all her clothes whilst Ben stripped off his clothes immediately (and still does!).
As Ben and Emma-Jane grew, they both became more and more frustrated at the fact that they couldn't communicate in some way. Emma-Jane was physically far more able than Ben, who was still only crawling, and so she could drag Sam to the kitchen or go and help herself to food but other than that she would merely scream. Ben could only scream and I had to guess most of his needs. We were all becoming increasingly frustrated so our Portage worker (thanks again Julie!) suggested that she work with both Emma-Jane and Ben separately and introduce PECS in a bid to alleviate their frustration. Both children took to PECS tremendously, and whilst the initial period was extremely hard work, pretty soon, both Ben and Emma-Jane had their own little books, full ofcolour-coded pages ofpictures. IfBen touched one of Emma-Jane's pictures then Emma-Jane would scream and get angry and vice versa. To them, PECS was their mouthpiece and they were quite rightly, very territorial.
Eventually we got to the stage where they were to go to educational nursery and soon to start school. Ben still wasn't walking, so Emma-Jane went to a mainstream nursery with support whereas Ben continued at home with Portage and the Child Development Centre. They still saw just as much of each other as Sam would bring Emma-Jane around after nursery and she would bounce on our gigantic trampoline with her hair standing on end, whilst Ben either cowered in the corner with his fingers in his ears or scurried back inside to play on his beloved computer. In fact I have bitter-sweet memories of one particular day when Sam and I were trying to coax Ben onto the trampoline and he was intent on scurrying back in to the computer. At that time both Emma-Jane and Ben were non verbal. Ben also seemed to have no reaction to pain. This particular day, Sam and I were chatting and suddenly heard a loud howl. Emma-Jane had slammed the door shut (I am sure many of you reading this have autistic children who insist on shutting every door!) on Ben's thumb. Poor Ben's thumb was badly broken and his nail completely crushed. At the moment Ben cried out in pain for the first time ever, Emma-Jane suddenly put her hands on her hips and drawled "Oh my God" in a long drawn-out accent! Neither Sam nor I knew whether to hug Emma-Jane for speaking, to be delighted that Ben was at last reacting to pain or to be mortified because of his poor little thumb. His thumb healed eventually though it is still slightly bent - a lasting mark of his and Emma-Jane's short time together.
Soon both Sam and I embarked on the mission of finding the right school and we knew that the children would not manage at mainstream schools. We looked at the local special schools and Sam eventually decided that she was going to give the school for moderate learning difficulties a go. Ben however, also had the physical difficulties and still did his level best to escape from everywhere and so, with our helpful head teacher (thank you Sam) and the LEA in agreement, I decided to flexi school him - partly at the school for profound and multiple learning difficulties and partly at home. Both of them developed in their own little ways once they started school. Ben doesn't strip at all at school, and Emma-Jane became toilet trained in the first couple of weeks of attending school.
Sam and Emma-Jane moved into a lovely house, just around the corner from us, their schooling was sorted, they were progressing well and Sam and I envisaged that our two little cherubs would grow up together, each developing in their own unique way and each learning from each other. We were wrong.
One fateful Tuesday morning, only six weeks after they had started school, Ben's class went swimming in the swimming pool at Ben's school. As usual, he came out of the pool and Emma-Jane's class walked around from her school next door and attended swimming lessons there. The details of what happened next I cannot go into since, to this day, investigations are still being carried out. What I can say is that on that morning, Sam waved her beautiful little girl off to school and never saw her alive and well again. In a class of eleven children with four members of staff to hand, somehow Emma-Jane went unnoticed and was found twenty minutes later at the bottom of the pool. With her beautiful long lashes fluttering as softly as a butterfly against her mummy's cheek, she breathed her last breath in her arms, and died later that day in hospital.
Autistic children have no awareness of danger. Autistic children have different sensory perception. Autistic children have altered reactions to pain. Just because a typically developing child may struggle and make some sound to show he or she is in distress, it does not mean that an autistic child will do the same. We must never presume that they will act in a given way. We must aim to see the world through their eyes.
Emma-Jane was a special little angel who taught so much to all who were lucky enough to be part of her short life. Like a gentle butterfly touching a flower, Emma-Jane touched our hearts, and though she was only here for a short while, her presence will stay with us always. One thing her special mum wants to do now is to make sure that her death teaches the greatest lesson of all - put safety first.. .above all, our children need to be kept safe.
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