Transition, Timing and Togetherness

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