Author: Fran

We arrive at our destination; Joshua giggles and signs ‘excited’. Showered, shaved and showing off his party clothes he is ready for Grandma’s birthday. Throughout the afternoon, Josh relishes the time that he spends with his favourite people and his favourite food. He communicates his thoughts and wishes with panache and remains calm when usurped by his four-year-old cousin as the chosen one to help Grandma blow out the candles. Once his expectations for the day have been satisfied and he has enjoyed everything he hoped for, he gives us all a regal wave and leaves with his support worker. Joshua is gone. My eldest son is 24 years old and he has well and truly flown the nest.

To the observer’s eye, there could not be a happier young man. Every event is enjoyed to the full, every birthday as thrilling as his own. But eight years ago this would have been a very different person, one with complex challenging behaviours, who, at an event like today’s, would have shouted, screamed and hit the guests. Tables would have been overturned and plates of food flung to the floor; our faces would have been etched with tension and exhaustion. Thankfully, Joshua’s challenging behaviour is largely a thing of the past. One reason for this transformation is that Joshua has left home: he has successfully transitioned. 

We had always intended for Joshua to live away from home when he reached adulthood. Over the years, I have read and considered the many reasons why parents continue to be sole caregivers to their adult children. I understand their rationale and appreciate how hard it is to let your vulnerable child be cared for by others. Letting go of Joshua was one of the hardest things I have ever done. But, despite countless fears and opposing views, we continued to be convinced that Joshua’s transition into his own home was in the best interest of us all. 

We explored the systems of support that Joshua could receive and due to the insecurity of available housing, set about purchasing a lifelong home for him. We, like others before us, anticipated that he would remain at home until at least the age of 18. From the beginning, the multi-agency meetings that convened to discuss his future all looked towards this as the earliest age for transition; the age when a neurotypical child is considered to be mature and adult, capable of accepting responsibility for their actions. 

Joshua was born with Angelman Syndrome. Children and adults with this are often described as having a ‘happy demeanour’. Indeed, despite Josh’s complex care needs and absence of speech, he was a very happy little boy. He approached every day with laughter and love, embracing every person and activity he encountered. However, with the arrival of puberty and adolescence, his laughter was replaced by frustration, anger and aggression. Away from family life, Joshua was often calm and compliant; his behaviour at home seemed to be triggered by a growing obsession with wanting my sole attention and frustration that he couldn’t have who and what he wanted. Anyone who got in the way of this could be hurt and his two younger brothers began to bear the physical effects of Joshua’s fury. Despite our best efforts to protect them and manage the situation, we became a family in crisis. 

When Joshua was 16 years old our home life had become untenable and unsafe. We asked whether he could move into the bungalow we were purchasing before he reached 18. The response was to provide more respite care; our concerns for our younger sons’ safety were largely ignored. This increase of short breaks only served to highlight how unsustainable things had become and the extent to which we weren’t coping. Given no alternatives, we persevered in trying to make the situation work. 

A month after Joshua’s 17th birthday he was staying at a familiar short breaks setting. An emergency phone call informed us that he had been aggressive toward other service users; there had been four incidents in a 24-hour period. We were asked to collect him immediately. This phone call was a catalyst; we realised that if a specialist facility with trained staff and shift patterns could not manage Joshua, how could we? His behaviours were worsening and his size increased their impact. In that phone call and in that moment we decided we could not bring Joshua back to the family home. Ironically, a week later he was moved into a residential care facility for adults.

Josh was largely settled within six weeks. We were a mess. It has taken each of us years to recover from what we lived through and the decision we had to make. We have all had our own journey; mine was largely one of intense grief and loss intermingled with guilt for ‘choosing’ between my children and for ‘failing’ Josh. The situation we had lived in, the trauma that my other children had been exposed to and the decision that we had been forced to make, all haunted me. We had set out to ensure that our whole family transitioned well, but our reality was a train crash; a bomb had exploded in our lives and we were left looking at the wreckage. 

As we attempted to put the pieces of our life back together, I was astonished to discover that many families hit a crisis point when their child becomes a teenager. The professionals who worked with our family failed to tell us that the pattern of deterioration and breakdown we were seeing was not uncommon. There were other desperate families who had been forced to make the same decision that we did. In light of this, we realised that some children with complex needs may need to leave a loving and safe family home in order to be happier and have their unique needs best met. That an earlier transition might be imperative for everyone’s mental and physical health. 

In hindsight, I believe that Joshua probably needed to leave the family home when he was younger; I don’t believe he was happy. He didn’t want to contend with siblings and vie for attention. He didn’t thrive in the unpredictability and fluidity of family life. His only way of communicating his frustrations was with his actions. We spent all our energy limiting the triggers and strategising our way through each day but it was the setting that was the main trigger for him. Ironically, no matter how much we loved him, we were the triggers.

In light of this, I’ve wondered how things could have been done differently? Is it appropriate for the professionals who support children with disabilities to be governed by neurotypical age and development? Should a framework for typical development be applied to the atypical child? If meetings and conversations had contained dialogue that acknowledged families can break down throughout the teenage years, we may have felt more supported. Discussions that addressed Joshua’s developmental needs and how they could be best met may have resulted in a better outcome. Instead, we were faced with a rigid adherence to rules and left to feel like we were responsible for the breakdown of our family. We needed divergent thinking; to be supported by professionals who ‘thought outside of the box’ and found solutions for our son, his needs and our circumstances.

The option of an alternative setting for Joshua to live in might never have been taken up when he was younger, but it would have helped to know it was there. Acknowledgment that a younger Joshua might have been happier living elsewhere would have been difficult to accept but may have prevented us from facing years of trauma. I would have liked to have been made aware of others who, like us, had been forced to make impossible decisions. To be advised that I was underestimating Joshua’s ability to live without me, that ‘more of me’ wasn’t the answer. Meeting health and social care workers who were less focused on the age of 18 and more interested in what we all needed in order to avoid permanent damage would have been invaluable. To be told that in the world of children with PMLD we weren’t so abnormal would have been a relief. 

We had spent years planning a positive transition that would benefit our whole family; one we could all embrace and move forward with. Though this didn’t happen, I do believe that Joshua’s actual transition was necessary. However, it was forced on us in a crisis and my family suffered avoidable damage. A more enlightened approach, sensitive to Joshua’s needs and those of the whole family, could have delivered a better outcome for us all.

As I watch my firstborn son follow his support worker to the car with barely a backward glance, I am intensely thankful for where we have ended up. At aged 20, Joshua moved into his own home with two other young men and he has never looked back. He is happy, content and thoroughly enjoys going to a party.

First published in the 2021 Winter Issue of PMLD Link

We’ve all had Covid. Olli caught it on his return to University. Andy contracted it from a visit to our local Accident & Emergency department. Samuel and I caught it from Andy and Joshua caught it from a member of his household.

My main fear throughout this pandemic has been that Joshua would catch the virus. The diligence and care of Joshua’s staff has been reassuring and his brush with the virus was asymptomatic. My fears have eased. 

I am not sure how we would have coped if the pandemic had arrived 10 years ago; our story would be a completely different one. What follows lacks humorous anecdotes and is difficult for me to write. However, I feel it’s important as it highlights some of the additional challenges a parent of a severely disabled child will have faced throughout the 2020/21 pandemic. 

A child with Angelman’s Syndrome has severe to profound learning difficulties. They are non-verbal and usually have significant sleep disturbances. Many have epilepsy. All need 24 hour care and supervision. Some are fully mobile, others not. Despite the severity of developmental delay, they comprehend and enjoy much of the world around them. ‘No flies on him’ has been a phrase often used to describe Joshy. Individuals with Angelmans are people lovers, thriving most when at the centre of attention. Intentional in their relationships, they are determined to initiate friendship with everyone they meet. They have a great sense of humour, a winning smile and draw people into their lives. Josh is typical of his Syndrome; funny and cheeky with an infectious sense of humour. 

As a parent of a child like Josh there are many rewards; too many to mention. There are also many challenges. As time progresses and your child gets older, it can be harder to notice the laughter and the love because parenting has become tough and tiring. It’s difficult to see the rewards when you’re overwhelmed.

At age 13, Josh had begun to exhibit extremely challenging behaviour. This put tremendous pressure on our family as he would hit and hurt anyone whom he perceived to threaten his relationship with me. My younger boys were bitten and their hair was pulled. We were increasingly unable to predict Josh’s behaviour both at home and away. Our family life was extremely stressful and help from social services was limited and had to be fought for. As Josh grew in size, he was able to upturn a table or throw a chair. His physical aggression hurt more and occurred on an almost daily basis. We were constantly strategizing; managing and limiting the triggers that seemed to aggravate his behaviour was exhausting both mentally and emotionally. 

I’ve reflected on numerous occasions how unsustainable life would have been if the pandemic had happened at this stage of our lives. What would lockdown have looked like in our home? If we hadn’t been able to take Josh out when he was younger we would have seen even more deterioration in his behaviour. School and respite were a lifeline for us. What would it have been like if these were cut off? How would I have managed to home-school two children whilst providing Josh with the 24 hour care and supervision that he needed? As I’ve read the comments of parents on disability forums and listened to their struggle, anguish and stress, I know that I would have been experiencing much the same if Josh had been younger when Covid came.

Throughout this pandemic, thousands of families like ours are facing untenable challenges. The absence of school and routine and a shrinking support network will have brought about a significant deterioration in the family’s wellbeing. Accessing special needs provision or hospital care has become more difficult. In the absence of places to go, attempts at keeping their child entertained at home has limited success. These parents are sleep deprived, trying to care for a child who’s life requires immeasurably more care and input than that of other children. Many children with additional needs require a team of caregivers, not just a lone parent who is having to divide time between all their children. Relationships will be breaking down. Siblings will be living under extraordinary pressure and tension. There is risk of a complete breakdown of the family unit in many homes today. 

And I am having to face none of this. I am merely outlining the life that would have been ours if coronavirus occurred in 2010. The life that belongs to so many people today. The thought of which horrifies me. 

Today my challenge is one that many face in this country: concerns for a son away at university, a business that has been forced into insolvency, a bored teenager who is having to do his A-level coursework at home. None of these are comparable to what I know others are facing; to what I would have faced at a different stage in my story. 

The one worry I have had has been lessened now that Josh has had Covid. It is not an insignificant worry. It is the ‘what if’ worry; common to all parents who have a totally vulnerable child.  ‘What if’ he gets coronavirus? ‘What if’ he becomes so ill that he’s hospitalised? ‘What if’ a trusted caregiver isn’t allowed to stay with him? ‘What if’ he is alone and frightened in hospital? ‘What if’ the hospital staff can’t understand him or fail to dignify his life? ‘What if’ they don’t fight for his recovery as much as they would for the recovery of a non-disabled person? ‘What if’ I can’t protect him, guard him, fight for him and hold him? This train of thought takes me nowhere positive. I weep as I write these words as the thought of their reality breaks my heart. It is better for me if I capture and expel such thoughts before they take hold in my mind.

I’m so grateful that we’ve all moved on and that today Josh is an extremely happy, settled and well cared for young man. I’ve not had to worry about his well-being throughout this time. He’s coped admirably and our regular FaceTime calls seem to be sufficient for him.

But to raise awareness and understanding I’ve needed to dig up our past. A pandemic has added to the already intolerable pressure that many families are living under. And who is noticing or caring for the carers?

In these days when neighbours and community seem more relevant than they did a year ago, please don’t assume that a carer is coping. I don’t know many carers who have coped. We learn to survive and find strength where we thought we had none. But coping? Does coping result in  burn-out or depression? Does coping morph into substance abuse or alcohol misuse? Does coping leave you with PTSD when the chronic crisis ends? As carers we pour out all that we have to look after and love a child who will never stop needing us. I am the mother of a lifelong toddler who is now in an adult’s body. There is no end. I will always be my child’s carer, even when others take over. When this pandemic has ended and the world has returned to ‘normal’, bear in mind the life of a carer whose world will never return to the ‘normal’ they knew before disability arrived in their life

My attention was drawn to an attractive, well dressed lady. She wore a white linen dress and a deep tan; her beauty seemed effortless. I sank back into my seat feeling shabby and dull.

We were sitting in a crowded departure lounge awaiting our night flight. My clothes and hair had already suffered sticky hands and spilt drinks and I had made little effort in my appearance for our trip home. However, with a sleepy child draped over each arm and another in my lap, I remembered who I was. I soon forgot about the lady and the feelings of envy she had triggered in me.

A short while later, we were called to board. Distracted for a brief moment, we failed to notice Joshua moving purposefully away from us. Our reflexes were sluggish, reflective of a fortnight in the sun. Josh was swift and focussed.

He grabbed at a chocolate bar that was being unwrapped by the lady in white. With efficiency and speed he stuffed it into his mouth. As a victory grin spread across his face, chocolate and saliva ran down his chin. His hands and clothes were quickly contaminated due to his efforts to consume the whole bar.

Desperate to minimise damage, Andy dropped our bags and ran to Josh. But it was too late; the situation had become unsalvageable. Overcome with guilt and with an attempt at an apology, Joshua had decided to embrace the lady and kiss her better.

She could have been understandably upset; her chocolate bar was smeared all over her impeccable clothes and our son’s attempts to put things right had only made matters worse. Our offer of baby wipes was wholly inadequate; our apologies insufficient.

But touchingly this beautiful lady, in her beautiful dress seemed to have a beautiful soul. With grace and kindness she made little fuss and reduced our tiny nightmare into a minor mishap. Dismissing the event with good nature and a smile, she made that moment in our lives so much easier. I applaud you Lady In White

It’s November. Christmas came to our shops and screens in September. This year, despite uncertainty about how we can celebrate the festive season, one thing is for sure; it will be celebrated. Not by everyone. Not everywhere. But by many. There is already a quest to bring cheer to the damaged world we live in; a desire to lift the nation’s spirits. Houses are prematurely ablaze with light and colour; Light in the darkness, joy to the world

Joshua is busy preparing for the festive season at his home. His countdown to Christmas coincided with the end of the summer holidays. Today, as he bakes mince pies, he will have dreamed of the cakes and chocolate that he hopes to consume over the next few weeks. Yesterday, as he created sparkling decorations, Christmas Trees and presents would have flooded his thoughts. He knows that the emergence of Christmas in the September shops herald the impending arrival of his three favourite P’s; people, presents and posh nosh. As he signs ‘Father Christmas’ and ‘Rudolf’ and dances along to ‘Jingle Bells’ his unabated enthusiasm will be infectious, his giggles and joyous grin, contagious. He is oblivious to the troubles of 2020 and, this year in particular, I will treasure his unbridled love of Christmas.

This, I confess, has not always been the case. Throughout his childhood, his excitement and anticipation in the run-up to Christmas wreaked havoc at home. A 3-month Advent for a child who has no concept of waiting demanded too much of us all. Josh became increasingly chaotic and unpredictable and his behaviour, mood and sleep deteriorated. We would fall into Christmas day frazzled and overwhelmed.

As the years went by, I began to resent and dread the premature Christmas advertising that so thrilled my son. For me, it heralded sleeplessness and stress and everything that I didn’t want our Christmas to be. For the sake of us all, something needed to change. Josh was unable to make alterations, so it was up to us to embrace Christmas from Joshua’s perspective. I mourned the loss of the ‘normal’ and opened the doors to Christmas in September.

As soon as Josh spied the early signs that Christmas was ‘a comin’ we welcomed a scaled down version into our home; festive books, carolling CD’s and the occasional decoration were amongst our early Christmas rations. In the evenings we would hunker in with duvets and popcorn to watch a Christmas film. As the months passed, our exposure to Christmas slowly increased; pantomimes, nativities, singing, dancing, extra decorations and the occasional party food were all scheduled into our diary.

Santa was invited into our house in December and we visited him at his county-wide grottos on an almost daily basis. We shared breakfast, dinner and tea with the jolly bearded man and he enjoyed the generous enthusiasm our family brought to the table. A tree was felled to the shout of “timber” and decorated to the shouts of “let me do it”. The house began to glisten inside and out and posh nosh appeared on the menu. Our chilled evenings in front of a Christmas film were the only moments when Joshua’s obsession would abate; as long as he remained immersed in Christmas he was happy to rest.

Every activity was micro-managed with picture diaries, symbols and signs, giving Josh routine and a sense of control. When less attractive activities needed to be woven into our days, Josh was more biddable as he knew that something Christmas-related would follow. Over the years I learnt to manage his excitement rather than stifle it. We limited all our usual activities, accepting that he and I would become tired. When we socialised as a family it was only with those who were comfortable with our chaos, noise and challenges; people who had the gift of blending their family into ours and loving us all no matter what.

We took advantage of any respite that we could access. For all our sakes it was necessary for me to work through the guilt and fear I felt. We all needed to press the pause button in Joshua’s countdown to Christmas. Being able to make time for the younger boys and their festive activities was essential. Being able to do nothing was a relief. Whilst Josh was happily entertained by others, we could concentrate on the needs of his siblings and ourselves.

On December 25th our house filled with Christmas; gifts and food appeared as if from nowhere and chocolate was hung on the tree. There was no particular order to the ensuing frenzy. I would have liked to spread out the pleasures and savour each moment, but Joshua couldn’t contain himself. To hold him back would have triggered shouting and stress so the control freak in me looked away and let him have free rein. Once it was all over my over-excited son relaxed for the first time in many weeks. He’d reached his summit and no longer needed to be on alert in case he missed the Big Day. On Boxing Day, he slept and Christmas was forgotten until the following September.

For a few years, we have only spent Christmas Day with Josh. As a sign of how happy and settled he is in life, he chooses to spend Boxing Day at his own home with his other family. He transitioned smoothly. I cried. When my mourning was over, I saw the good in the change and realised how much more we could enjoy Joshua’s enjoyment.

We take him out for excitable evenings without fretting about whether he’ll sleep at night. We can say the word ‘Christmas’ as many times as we want and sing Jingle Bells in September; ours is not to worry about the wider impact this may have. We are like the ‘fun’ uncle and auntie who buy noisy Christmassy gifts and return Joshua home as high as a kite for others to deal with.

Christmas has had its challenges. This Christmas will have world-wide challenges that no one could have anticipated in 2019. As I write this, I’m struck by Josh’s ability to encounter every Christmas as if it were his first; the magic and wonder is never lost. His optimism and expectation that good things will come to him is absolute and he receives without hesitation or question; trusting in the gift and the Giver. This is a remarkable trait. One which many would benefit from knowing at the end of a year which has seen such loss and uncertainty

Each year our church joined with hundreds of other Christian campers for a family camp on an agricultural showground. This was one of the highlights of the boys’ summer holiday and we made every effort to go. As soon as we arrived at the site, the boys would jump out of the car to race off and find friends. All three were buzzing.

Josh loved all the sights, sounds and smells of this holiday; he was surrounded by his favourite people, music and food. Once our tent was pitched, we’d give him a tour of the site and then set about making everything in our temporary camping world Josh-friendly. The spare sleeping pod was transformed into a temporary larder, tightly zipped up and shielded by camping chairs. A wind breaker at the entrance of the tent helped Josh feel less territorial. No one could take him by surprise with a chipper ‘hello’. Visitors were made to walk around it giving Joshua extra time to get used to their arrival. Comfy chairs, rugs and foot stools reminded Josh of home and a sofa and television inside a small outbuilding was ideal for any ‘time out’ that he may need.

Once he was reassured that all was as it should be, Josh ate his dinner and went to bed. The sleeping pod that he and I shared was the epitome of cosiness. This was the point that he usually relaxed and we could be reasonably reassured there were no surprises in store. We thought we had this holiday sussed as we had done it so many times before.

However, as parents of a differently able child, we were foolish to think we could prepare for every eventuality. The complex patterns in his behaviour meant that we could never predict a certain outcome. On my last and final camping trip with Josh, I encountered a tale of the unexpected.

In the middle of our first night I awoke to the sound of unzipping; Joshua had escaped from our sleeping compartment and was somewhere in the main tent. My graceless tumble off the air bed and out of the pod triggered giggling in my errant son. Reassured that he was still under canvas but unable to locate my torch, his whereabouts were unknown. The clatter of chairs and the sound of another zip orientated me to our ‘larder’. He was cornered. When we returned to our pod, I placed my air bed across the entrance reasoning that any further attempt at escape would have to go past me. Indeed it did. Every 15 minutes until morning.

The next day Andy and I rearranged the sleeping area. We hid the zip under a pile of pillows; the addition of my head at nighttime would further conceal it from view. All I had to do was get through a day of hearing a zip open and close both in my head and on the campsite.

On the second night, our plan worked. Joshua didn’t try to escape. However, I was awoken by a strong faecal smell. Repugnant in such a tiny space, I feverishly searched for the zip and opened the pod. As I gulped in the fresh air, Josh, ever the opportunist, tried to escape again. I shone my torch and caught him.

I had never changed a pad in total darkness before. Both hands were necessary for the process so I held the torch in my mouth. Joshua, thinking this was a funny game, began to try and grab it. I clamped my teeth down and tried hard not to gag. Much wriggling and grappling later, Josh was finally freshened up. I frenetically wafted the main tent flap but when we returned to bed, our airless pod retained the smell until morning. I struggled to sleep.

By day 3 my mood had dipped; Andy took over the reins. Time on my own and an abundance of fresh air helped. I went to bed that night ready for anything. A supply of torches, changing materials and pillows were my weapons of warfare. No more mischief.

I awoke in darkness; Josh seemed to be laying on me. As I tried to manoeuvre him back to his airbed he quickly returned to mine. Sleepily, I realised why; his bed was deflated. My attempts to blow it up were futile and it remained completely flat. I made room for Josh on my mattress and we both fell asleep. Aware of the ground, I awoke again; my own bed was also flat. Numerous ineffectual attempts were made to inflate it. At sun rise I spotted bite marks on the PVC. Joshua had bitten holes in both our air beds.

Desperate and with Josh in tow, I woke Andy and told him I was going home. The cheery ‘good mornings’ from early risers on the campsite did nothing to lift my spirits. I fixed my teary eyes on the ground, unable to share the anguish and misery that I felt.

A couple of hours later, we were curled up on the sofa at home. Joshua had relaxed. I realised that the excitement and change of routine had been stressful for him. Even though he enjoyed being there, the whole experience had become too much for him to deal with; he didn’t have the ability to self regulate his emotions. He was dependant on us to do that for him by adapting his circumstances. We both chilled and watched his favourite TV programmes. That night, back in his own bed, he was at peace.

We returned to the camp the next day with a change of identity. We were now ‘day visitors’ and would remain so for the years to come.

The following year Josh and I discovered Travel Lodge.

“Isn’t it fantastic that Josh has started walking”

Such a declaration would normally provide opportunity for proud parents to recount the exact date and time their child first walked; details of the setting, those present and how it all happened would be enthusiastically shared. We, however, were puzzled.

To the best of our knowledge, Joshua wasn’t walking. The weak muscle tone in his legs meant that, at almost two years old, he could only crawl. We had never been given a guarantee that he would walk and physiotherapy exercises did not seem to be progressing this area of development. At most, they provided Joshua with endless opportunities for games, giggles and mischief.

The nursery owner noted our confusion and was puzzled herself by our unenthusiastic response. We explained ourselves and gently suggested that she may have got it wrong. Emphatically, she declared that not only was Joshua walking, he had been “for a few days”. The keen interest she took in each of her charges made it difficult not to believe her.

Once home, we encouraged Joshua to show us his newly discovered skill. Bemused by our enthusiasm, he crawled over to a more achievable activity. Refusing defeat, we suggested an after-dinner stroll in the garden. Keen to accompany us, he was perplexed when we lowered him to the ground feet first. He sat down, looked up at us and proceeded to eat some grass. Shady attempts at bribery were also dismissed by our seated son. A treat for a toddle? He reached for the treat from a sitting position.

Arriving at the nursery the next morning, we recounted our experience. The staff told us to return after lunch when we would be guaranteed a sighting of his toddling. All we had to do was peep over the garden wall and hope that no one reported us to the police.

Arriving at the rendezvous, we parked our car around a corner and crept to the pre-arranged observation point. Holes in the brickwork meant we could watch the playing children. As we scanned the garden, we noticed a beautiful blond-haired boy. Steady on his feet, he was laughing as he chased the other children and joined in with their games. Oblivious to our presence, Joshua, aged 23 months, was walking.

Neither of us spoke as we watched him; the moment was too meaningful to be filled with words. Eventually, Andy called his name. Josh, uncertain where his dad’s voice had come from, dropped to his knees and crawled. It took almost a week of encouragement before he would admit to us that he could now walk.

An incredibly important milestone had been achieved; one which we had been working towards for many months. Though I was pleased and relieved, I found his behaviour unsettling. It tapped into questions I had about my proficiency as a mother. Why would he do such an important thing for others and yet not for me? Was I not what he needed? Did he prefer others to me? How important was I to him?

Over the years, as I have sought to understand my son, I have been reassured to discover that I am not the cause of his inconsistencies. Joshua compartmentalises his behaviour; abilities or emotions will be expressed in some settings but not in others. At home he would raid the fridge; at respite he would not. At school he would use the toilet; at home he would not. At home, he didn’t sleep and refused to remain in his bedroom; at respite he would stay in his bed all night long

At times this was galling and frustrating. But I have come to recognise that this is one way that Joshua expresses himself. I may not fully understand his rationale, but he is as he is. Once Joshua decides what his ‘normal’ is in one setting it is unlikely that it will change. Conversely, when he refuses to repeat this normal in a different setting, it is unlikely that this will change.

His actions reflect what we all do; they are just more polarised. A child who can behave perfectly in school may do the exact opposite at home. An adult may express views and behaviours in a crowd that would surprise and shock those who know them privately. We can all vary our behaviour depending on where we are or who we are with. With Joshy, however, there is no subtlety. He, for his own reasons, decides what he will and will not do. He has no compulsion to hide his actions and does not consider the consequences.

Andy and I laugh when we see him adapt his behaviour depending on who appears in his world. Our arrival can elicit jealousy in him; a staff member may suddenly receive a slap if they try to engage with us whilst we are with him. This is behaviour they otherwise do not see. It causes amusement amongst his support staff and a hint of embarrassment upon his face. But, despite being caught out, he largely continues to persist in doing things his own way.

And rightly so. This is one area in Joshua’s life where he gets to choose. In his largely dependent world, Josh maintains independence where he can. He has the right to express himself in this way.

Nowadays, I like the predictability of his unpredictable behaviour. It is another endearing characteristic of my differently able and extremely stubborn son.

Olli is confident, laid back and pretty unflappable. But on this occasion he was visibly shaken and we had no idea what could have happened.

Josh loves church and sits quite happily on his sofa throughout the service. Midway through this particular Sunday service Andy and I took the big step of leaving him in the care of his 17 year old younger brother. Most of the children went out to their different groups and we left to lead a group of young teens. The adults remained to listen to the sermon and Josh happily settled down to watch his iPad. The demand on Oliver should have been minimal. We didn’t anticipate any problems.

Josh is proficient with his iPad – he knows what he likes and he knows how to get there. He reaches his chosen destination with impressive speed. YouTube is a favourite; the birth of babies his viewing choice. The sights and sounds of labour aren’t to everyone’s taste, especially in the middle of a Sunday sermon. We asked Olli to keep a vigilant eye on what Josh was watching. Headphones were essential.

‘One born every minute’ progressed to ‘Call the midwife’. The occasional pantomime was watched in between. All remained calm until Olli found, to his horror, that Josh was watching something altogether different. Josh had somehow managed to segue from heart warming stories of child birth to what appeared to be bizarre Japanese pornography!

Horrified, Olli grabbed at the iPad. His panic was obvious to Josh who pulled the iPad back with a threatening roar. Olli made another grab for the iPad but Josh fought him off. Most people present were used to Josh’s squeals and shouts – this was different. Olli was visibly distressed and Josh was bellowing his displeasure.

Meanwhile, the video continued to run.

Olli made a further, desperate attempt to wrestle the iPad from his brother. Josh anticipated this and held the iPad aloft. The Japanese porn stars were now performing to a stunned church audience.

By the time we returned, Josh was grumpily watching Mr Tumble whilst Olli was hyperventilating. Having made a successful final lunge for the iPad, Oliver hadn’t let go of it since.

Though he had pushed boundaries and broken rules during his teenage years, this experience left Olli completely mortified. As we prised the iPad from his grasp and he recounted his tale; “In Church!” he spluttered, “he watched that in Church!” Quite. Andy’s failure to keep a straight face at that point didn’t help!

One such time was on a holiday in France. We’d found a small café tucked at the end of an alleyway, away from public view. Pleased to be there and buoyed by the absence of clientele, we sat outside for lunch. I experienced a rare moment of relaxation; the children were happy and calm and the food was being served quickly. The staff seemed understanding and no one paid particular attention to us.

Another family walked up the alley and sat on the table next to ours. My heart sank. A ‘bonjour’ was exchanged and we continued with our lunch.

Before too long, our courtyard neighbours began to show an interest in Josh. Giggling amongst themselves, they pointed at his bib and his dribbling. They looked and whispered and whispered and looked. I told myself to ignore them, to engage and smile. But no one in their family would engage with me. They were all transfixed by Josh.

Those in their party who sat with their backs to us turned their chairs round so they could see better. More chatter. More attention. Andy joined me in the attempt to engage. We were ignored. Finally they transferred their lunches to their laps and sat in a row, staring at the show who was my son.

The anger I felt was inexpressible and uncontrolled. With a limited French vocabulary, I accused them of being ‘le cochon’. In fact, very rude ‘cochon’. Not to be messed with, I demonstrated my fury with the corresponding Makaton sign. They seemed unperturbed. My French was limited and, in my fury, I resorted to Anglo-Saxon. We scooped the children up and exited the alleyway.

They’d treated Josh like an exhibit in a freak show – a biological oddity who was on display for their entertainment. It floored me. The incident was deeply distressing and threatened to overshadow the entire holiday. I worked hard at gaining perspective but for a while I felt anxious whenever we went out. To confidently put ourselves in public view again felt too much.

I believe I would respond differently if I was faced with this situation today. A calmer me would challenge them firmly but politely. I would maintain my dignity.

I wouldn’t run away or hide. I would stay and let them watch us loving Josh; we would demonstrate his value by the way we value him. I would want them to be enlightened; I would want them to leave that courtyard challenged and changed for the better, by their encounter with a differently able child.

When I’m out with my family I often feels that we’re on display; players on a stage with passersby as the audience. This is unavoidable for a family like ours. We attract attention, Joshua attracts attention. Most people are open and want to understand. Few are unkind.

For many years I was overly self-conscious, finding the stares uncomfortable. Prior to leaving the house, I would weigh up whether I was up to the unpredictability of a trip out with Josh. Was I emotionally strong enough to ignore the attention he inevitably attracts? He is loud. He is different. People look and wonder.

I too would have looked and wondered. I would have noticed those with learning difficulties and speculated about their lives. I would have felt something; most likely sympathy for the parent or pity for the life that I saw before me. I perceived it to be thwarted, a ‘less-than’ life. I regarded disability as something to be dreaded – a burden. I wouldn’t have engaged as I did not know how. This was before Josh. This was before it was my son who was on display.

I have concluded that there are three distinct groups of watchers. Those who glance but quickly look away; those who look, think and wonder without realising that they’re actually staring; and those who stare without ceasing. These three groups are more distinct in children – the disinterested, the curious and the mesmerised.

Once I identified this I found it easier to formulate my response. What harm is there in a glance? A longer look doesn’t do damage. I would prefer this to lead into engagement or questions but I understand that no malice is meant. It’s just intrigue. Joshua is unrestrained when we are out; nothing diminishes his joy and excitement. He will attract attention. Yet he is unapologetic and I have learnt to follow his lead. I have become largely impervious in order to survive. Today, when people look, I smile in return and join in with Joshua’s fun.

However, I still struggle with the unabashed starer. To be the continued focus of uninvited interest feels invasive. But I am no longer cowed. I try to engage them and draw them into our world. Most are pleased; they feel more comfortable once the unknown starts to become familiar. They realise that we’re human and not to be feared. And fear is, I believe, one of the reasons people stare. When people are different and we don’t understand them, it frightens us.

Staring is a reflection of a world that isn’t yet comfortable with difference, a world that is only partially enlightened. A world where disabled people still face discrimination and negative attitudes. And sadly, there are those who, despite our attempts at interaction, have continued to gape. These are the times when it is difficult to remain unaffected……..

Dedicated to Sam x

Josh loves tents. August 2002 found us in Wales for a 2 week camping trip with good friends and their family. We pitched up on a campsite overlooking the sea and settled down for sun and swimming. The first few days were spent on the beach, building sandcastles and burying one another. Having fun

Unbeknown to us, this area of Wales is renowned for having its own micro-climate. We found this out the hard way. Whilst the rest of the country enjoyed uninterrupted sunshine, we were hit by an unexpected storm and forced to change our plans. Waterproof trousers were bought for the children and we hastily searched for indoor activities.

The storm worsened. The campsite emptied and finally even the scouts left. At the height of the storm, our husbands spent a whole day holding the two family tents down for fear they may blow away. Despite all of this, my holiday didn’t feel ruined

In fact, from my perspective, the holiday seemed just fine. Yes it was raining. Yes there was a gale. But we had a huge field to ourselves in which the boys could run safely and freely. I’d spent the last 4 years watching Josh’s every move in fear that he may run off or upset a passer-by. The wet empty field was perfect! The absence of other campers with their stares and unwelcome attention was also a bonus. Nothing that Josh did or needed was a surprise to those of us who remained in the field. Not even a visit to the flooded laundry room and the risk of electrocution was enough to sour my mood.

I am astounded that I failed to notice the depression which was setting over my adult companions. My lack of insight was so great that when it was suggested we went home I was genuinely surprised. I thought everyone was as happy as me! I had clearly mistaken their gallows humour for genuine enjoyment

This camping experience was so traumatic for my friend Sam that it took her many years before she would go near a tent again. The rat that visited her pod during the night was her breaking point. Andy was so miserable that he vowed we would never have a main summer holiday in the UK again; Steve was bemused that I thought holding a tent down for a whole day made for a good holiday.

Though I badly misread the situation, I do remember the freedom that I felt as I watched Josh and Olli toddle and crawl in a field. They were happy and safe; I was happy and relaxed. I was with dear friends who despite my oblivion to their pain, still love us all completely. I had felt at peace for first time in a long while. My memories are good ones