To mark World Autism Awareness Week (27th March – 2nd April), Mummy Social’s Sarah Turner caught up with mum-of-two from Devon, Jo Bailey, whose extraordinary book tells the true story of the bond between her son, Sam, and a very special pig named Chester.
Sam was two when you first started noticing him withdrawing from the world around him. Can you describe what he had been like as a baby and how his behaviour had changed at that point?
Sam was born in a Spanish hospital in 2003. Apart from the first month of sheer exhaustion during which he had the most terrible colic, Sam was the perfect baby! He was hugely placid but he laughed and chortled and hit every single milestone. Being married to a Spaniard, we decided that Sam would be raised in a bilingual household and he learnt English and Spanish simultaneously. He never crawled but he started to walk at around fourteen months. Everything was going well.
Baby William arrived when Sam was nineteen-months-old and it was about six months after that when I first started to observe small changes in Sam’s behaviour. He became much quieter and started to become obsessed with straight lines, lying on his front and rolling a toy car up and down in front of his eyes. Mentioning it to my paediatrician, who had witnessed the larger-than-life character of Sam’s little brother first hand, it was put down to William encroaching on Sam’s space. But within a very short space of time, the obsession grew. He went from rolling cars up and down in front of his eyes to bending his head low over anything that represented a straight line (like the edge of a table) and running along it, his eye as close to it as possible, the other eye squeezed tightly shut. Up and down, up and down. He craved repetition and predictability, watching the same episode of Thomas the Tank Engine over and over. He would have an almighty meltdown if things happened differently to how he was expecting them to.
My Mum took him to the supermarket one day and he was running up and down with his eye as close to the edge of the refrigerators as possible, when he smacked into a concrete pillar, injuring himself quite badly. She told me then that she thought there was something “not quite right” and that I should take him to see someone, if only for peace of mind. Within the space of 3-4 weeks, my little boy went from being a typically developing, bilingual toddler to a withdrawn little boy who had lost all of his language. He also lost all eye contact, stopped feeding himself and stopped calling me ‘Mummy.’ He spent most of his time lying unresponsive on the sofa, stroking his earlobe and staring into space, his eyes completely vacant. In a matter of weeks, Sam had completely shut down and it was utterly terrifying. It was no shock to me when the official diagnosis came a year later – I had read so much on the subject, I could already see all the traits in Sam and I just knew. I felt it in my gut. But in spite of this, it didn’t stop my heart breaking into a million pieces when the child psychologist uttered the ‘A’ word. I was utterly devastated, not just for me, but more so for my son and the huge battle that lay ahead.
Tell us about Chester! When did Sam first meet Chester and how did he become part of the family?
Not long after Sam was referred for diagnosis, my husband walked away from our marriage. Still in Spain and feeling increasingly isolated, I knew from my extensive research that the British were the pioneers of Autism research and that Sam would stand a greater chance of having a future if I brought him home to the UK. We settled in Devon, where I’d already managed to get Sam onto a CAIRB (Communication & Interaction Resource Base) within a mainstream setting at a fabulous little school in Ivybridge, called Manor Primary. Although things were improving massively for Sam on the educational front, things at home went from bad to worse. He started to develop phobias and his meltdowns became more frequent and aggressive. By now, I had met a new partner in Darren, an oil-rig manager, who absolutely doted on the boys and was prepared to take on Sam and his autism and love him unconditionally. We decided a pet would be rather a good idea for Sam, who at five was still non-verbal.
It was on a visit to a local miniature pig farm called Pennywell, that our lives were changed forever. I had heard of the miniature pigs and the calming effect they had had on other youngsters with special needs, so I thought it might be worth having a go, to see if the piglets could calm Sam too. As we approached the pen where the piglets were held, Sam was bouncing and flapping his hands – he does this when he is highly excited or anxious. He was so small at first that I didn’t see him, but in the corner of the pen was the only ginger piglet of the litter. He looked sad and alone, away from the rest of the litter. Sam had also spotted him. Sam usually needs constant intervention and guidance to do most things but on this day he stepped into the pen of his own accord and made his way over to the ginger piglet. He sat down in the straw, picked the piglet up and laid him in the crook of his arm. The piglet snuggled down and went to sleep and Sam’s flapping and bouncing ceased. He was immediately calm. Having witnessed this remarkable change in Sam, we decided we would purchase Chester and after much research into micro pigs and pig-keeping and in-depth discussions with the farmer over the following 8 weeks (we also met Chester’s parents who were the size of cocker spaniels), papers were exchanged and we became Chester’s proud new owners. However, Chester didn’t stay ‘micro’ for long and now weighs nearly 20 stone!
In your book, you say that Chester ‘set Sam on the path to living a full and happy life.’ Can you pinpoint what it is about their relationship that has had such an extraordinary impact on Sam’s life?
One of the things some people on the autistic spectrum struggle with is empathy. Sam found it extremely difficult to put himself into another person’s shoes, to imagine how another person might be feeling. As we prepared for Chester’s arrival, Sam began to show signs of empathy, something we had never witnessed before. It was quite remarkable. Sam chose a spot beneath the radiator in the living room for him – he knew that Chester would need to be warm. I watched him as he placed the basket in the spot he had chosen and I remember feeling goosebumps creep slowly down my arms and legs in a wave of cautious optimism about the changes Chester’s arrival might bring. Ultimately, thanks to Chester, the empathy Sam developed gave him the ability to form a friendship at school; something children on the spectrum find exceptionally hard to do.
Perhaps the most important moment for me, as a mother, was the day after Chester came to live with us. From the time of his regression, Sam had written William off and this absolutely broke my heart for Will. At 5 years of age, Sam was practically non-verbal and Will had all but given up hope of interacting with his older brother. From a very young age, Will had learned to entertain himself. But the day after we brought Chester home, the boys played football together in the garden with Chester who dribbled the ball about with his tiny little snout. Every now and then Sam would call William’s name, delightedly drawing his brother’s attention to what their new pet could do. They played and laughed together all afternoon in the sunshine. It was incredibly moving and a memory I hold very close to my heart.
In the days and weeks following Chester’s arrival, the two of them became inseparable. Chester followed Sam all over the house. Sam built a den under the dining room table and the two of them would spend hours in there together, Sam drawing and Chester lying by his side. It was as if Chester knew Sam needed a friend. This incredible friendship and understanding that was beginning to build up between the two of them was a thing of beauty and proves, I believe, that animals (and especially pigs!) have a far greater emotional intelligence than we ever give them credit for. As Winston Churchill once said, “Dogs look up to us. Cats look down on us. But pigs treat us as equals.” And Chester accepted Sam unconditionally, offering him friendship and loving him just the way he was.
What has been the hardest moment in Sam’s autism journey so far?
There are two episodes in Sam’s life that really stand out for me when he has particularly struggled. The first was whilst we were still in Spain. Sam attended a small provincial school which, understandably, had absolutely no idea about autism and consequently Sam was subjected to noisy classrooms and dining halls (and believe me, in Spain, it was loud!), different seats in the dining hall every day, different dinner ladies, different teachers without warning and no visual supports whatsoever. Such a huge amount of noise and unpredictability sent Sam over the edge. He would spend his time with his hands clamped over his ears, his head on the desk and his anxiety levels through the roof. It eventually escalated to him ripping a picture off the wall in the dining room and hurling it at the dinner lady’s head. He attacked other children and frequently soiled himself in school and the minute he got home. It was a tough, tough time. I thought I’d be prosecuted if I didn’t send him to school but it broke my heart every day having to drop him off there knowing what he was going to have to endure for yet another day.
The other time was much more recent and coincided with Sam’s transition to secondary school. Typically, change and transition are also things that people on the autistic spectrum really struggle with. With transition to secondary school looming, Sam took a downward spiral to a very dark place. He slept in our bed for seven months on the trot as staying in his own room would cause him to become so anxious he would spend the night muttering under his breath and flicking at his eyes, like a child possessed. It came to a head when he started to say that he wished he was dead because of his autism. He was beginning to see his autism as a real negative and started talking about cutting it out of his body. This was particularly worrying; especially as we had discovered over the years that Sam had no compunction about hurting himself physically (he has also thrown knives at us during a meltdown situation.) Almost 80% of people with autism experience a mental health problem including anxiety, depression and ADHD. I did not hesitate, therefore, to get the Mental Health team on board to help Sam, but without wanting to give any book spoilers, it was actually Chester who saved the day!
What’s the best thing about being Sam’s mum?
This is easy. The best thing about being Sam’s mum is watching him grow and develop and achieve so much more than I ever dreamed he would be capable of during those dark days when I first received his diagnosis. I am so proud that he has grown into a polite, well-mannered, sensitive young teenager who gives his very best every time and shows empathy towards others and who has a wicked sense of humour. He brings so much love, joy and laughter to our family. But above all, it is Sam’s purity that is so captivating. People with autism have a purity that is almost angelic and Sam has this in shed loads.
Any mother of a child on the spectrum will also understand that autism goes hand in hand with downright belly-wrenching, laugh out loud moments which are truly, truly priceless; such is the beauty of autism. Sam, with his sensory processing disorder, is hyper-sensitive to noise. This means he has acute hearing. When he was due to leave primary school, the Year 6 leavers had to write an ‘amazing fact about themselves’ which would then be printed alongside their photos in the Leavers’ Book which was later bound and sent out to all Year 6 parents. On opening the book and excitedly finding Sam’s page, we discovered that he had written the following:
“I have a superpower which is super hearing. This means I can hear police sirens before anyone else. This comes in really handy when we’re on the A38 and Dad is speeding.”
You say in your book that you wouldn’t change Sam for the world but would change the world for him if you could. If you had the magic wand to do so, what changes do you think could help Sam?
Without getting too political (so I shall keep this brief!), my magic wand would educate every human being about autism and how the autistic brain works. Autism doesn’t have a ‘look.’ As it is a neurological condition, people with autism look like their ‘typical’ peers.
My wand would stop people staring at my son, (who at 14 is now almost 6 foot tall!) when he is flapping his hands and running up and down and bouncing on his toes! It would stop them from making him feel different; making him feel bad about himself; making him feel like he stands out, when he already knows he does but there’s nothing he can do to help that. My husband doesn’t do wands and is certainly less forgiving – he has no qualms about approaching anyone who is staring at our son disapprovingly, or laughing at him, and saying, “He has autism. What’s your excuse?” My wand would create so many more people like my husband!
People with autism do not need to be cured. They quite simply deserve our acceptance, support and unconditional love.
Jo’s incredible book, Sam & Chester is available from Amazon here.
Header photo credits: The Telegraph/Andrew Crowley