Humour is our medicine - in conversation with Michael and Paul Atwal-Brice

In conversation with Michael and

“With Levi and Lucas we were kind of thrown into the unknown. We just didn’t realise how hard you have to fight for everything for people with disabilities. You really have to battle for everything.”

Michael and Paul Atwal-Brice are used to fighting for what they want, for what they believe in, and for the people they love. After all, when they first met the future that they would one day share was not one that they could truly dream of, and the life they have now was not one that was possible then, or even legal. The Atwal-Brice’s are dreamers and fighters, and together they have worked hard over their 22 years together to ensure that the life they hoped to lead is a life they can, truly prepare them for everything that comes with being the parents of children with complex medical needs and learning disabilities.

Michael and Paul first met in 2001, and after civil partnerships were established they chose to cement and celebrate their love in 2008. However, after the Marriage (Same Sex Couples) Act came into force in 2014 they were devastated to learn that they would not be able to get married as they were already in a civil partnership.

They decided to challenge the government, successfully, to the joy and relief of countless other couples who were also in their situation, with the government putting new systems into place to allow marriage without the need to dissolve a civil partnership first before the year ended. They also became one of the very first samesex couples to be formally registered as foster carers in South Yorkshire, and have gone on to care for well over 20 children over the years.

In 2008 they made the decision to adopt identical twin brothers, Levi and Lucas, who were two years old at the time and although they were aware the boys were ‘a little delayed’ they’d assumed they’d catch up once they were settled into a loving home. The complex nature of the boy’s disabilities only became clear over the coming months and years. Reflecting on those early days they explain that “We were thrown into the unknown. I think if you were to look at Levi and Lucas, and write everything down on a piece of paper, their different diagnoses and everything, then I think as new parents you would possibly run a mile thinking we couldn’t deal with, or cope with that, but for us it was too late because the strong attachments were already there.”

It was this decision which truly changed their lives in ways they couldn’t begin to imagine. A life of highs and lows, of hope and worry, the complicated and unexpectedly beautiful life of parent carers. In 2020 they adopted another set of identical twin boys, Lance and Lotan. Paul explains with real honesty that before they arrived he was worried that he would not be able to love them as much, that his love for Levi and Lucas was such that he simply wouldn’t have enough love left to offer the two younger boys. “When we became parents to Lance and Lotan I actually really struggled a bit, and I’m very open about this, because the love for Levi and Lucas is so intense, and I used to put so much pressure on myself thinking ‘but how will I love two other children like I love Levi and Lucas?’

The first few months of family life were not always easy when Levi and Lucas first arrived to live with them, but as fairly experienced foster carers they’d not expected it to be. The issues they were experiencing were more complicated than anticipated, and gave rise to new concerns, and new assessments. The boys were three years old when, at a multi-disciplinary meeting with a large group of the medical professionals involved in their care present, Michael and Paul were told that their sons had both been diagnosed with severe autism.

It is worth clarifying that the definition of autism has changed over the years, and the language used to describe autism has also changed, and will in all likelihood continue to change in future years as we understand more, and as conversations continue. However, in the context of the diagnosis that the Atwal-Brice’s were given, and at the time that they were given it ‘severe autism’ was one of terms used, along with ‘level 3 autism,’ to describe the most significant level of autism. Accordingly, the diagnosis indicated the probability that the person would be nonverbal, with restricted social communication skills, sensory processing issues and behavioural challenges. People with severe autism typically require substantial support, often including 24-hour-aday care.

After they were diagnosed and given this new label, a label that would set them apart for the rest of their lives Paul explains that “I just cried because they’re given this label and now they’re going to be known as this label and they’re not going to be known as Levi and Lucas, who are just children.”

Reflecting back on this time they explain that “we went through a phase where we resented the world, and we hid away because the world was so judgmental. I would say it was a stage of mourning, for Levi and Lucas, due to the fear that they can’t do this, can’t do that, that there’s nothing here for them. Then we had almost a lightbulb moment where we realized that they are the people we love the most, so why are we mourning them? We needed to turn that around and to start celebrating who they are, accepting who they are and showing the world that it is absolutely fine to be different.””

It was then that they felt what they describe as a natural desire to fight to make the world better for their children kick in, and they knew that actually they were more than capable of stepping up to the unexpected challenges life now presented them with.To once again fight for what was right, and fair, and inclusive, this time for the boys that they loved to be able to live a life that they could not only enjoy but thrive in.

Their determination to focus on being happy, and on making the world a better place for their boys was severely tested when, around six months later, first Lucas and then Levi began to experience seizures. The onset of their complex epilepsy once again changed everything. It is hard to truly describe the fear, the pain and the sheer trauma that comes with watching a loved one seize uncontrollably. The wait for the ambulance. The relief to finally be rushed to hospital, lights flashing and siren blaring. The relief is short lived, overshadowed really by the fear that they are still not truly safe, that it is not over, that everything is still in the balance. Whilst as parents we can grow, adapt to and hold even the hardest of spaces for our children, it does not mean that we ever truly come to terms with the hand they have been dealt.

“What a tough journey we’ve been on with their epilepsy. People ask us sometimes ‘would you change anything’? Yes, absolutely! The only thing we would ever change with Levi and Lucas is the epilepsy, the medical side of it all. Their autism, we wouldn’t change that for the world because that’s who they are. We don’t want them to be any different. But medical health wise, absolutely, we would change it if we could.”

There is a well-used phrase, often varied slightly as needed for the context, but which essentially states that as a parent ‘you can only be as happy as your unhappiest child.’ If you have not one, but two children whose lives are overshadowed by complex epilepsy this rings especially true. They are both frank when talking about their own mental health, and the way in which they are both affected by their sons’ intractable epilepsy.

“You have people who have epilepsy which is well controlled, and they deal with it, maybe they have seizures every now and again. For us, we are in the life threatening category with the severity of their epilepsy. It’s just horrendous when you’ve got a child who is ventilated and in the PICU (Paediatric Intensive Care Unit) because of his epilepsy. Now, years down the line, I’m very open about saying every time we hear a bang in the house we are on edge. We just think the worst. I really believe that from that moment when Levi was first ventilated all those years ago on PICU, that that experience has given us some form of PTSD without a doubt.”

The reality is that family life is busy with four boys, the fact that two of the four boys have complex and demanding additional needs in all aspects of life only adds to this. Life was always going to be challenging. Challenging does not have to mean difficult, life can still be fun, chaotic maybe, but full of happiness, laughter and just the joy that a thriving busy household full of children can bring. The emotional toll that watching your children go through deeply traumatic experiences takes is not to be underestimated and yet it is.

There is very little meaningful support out there for parent carers and what support there is tends to be focused on practical help. Perhaps the offer of a support group, or vouchers for the local gym, maybe even some brief periods of respite. Emotional support, counselling, and meaningful therapeutic frameworks are simply non-existent across most of the country. Years of funding cuts, of local authority social care budgets being slashed, of over-burdened health trusts means that for as long as parent carers can just about keep going then their needs are not just ignored, they are simply not considered. Now, after years of struggling, of not talking about how they were feeling, they are both open about their reality in the hope that meaningful conversations around parent carer metal health can begin. Paul explains that “I’m very open about talking about it now. At first I wasn’t ready, but now I am absolutely open, and trying to make people aware of the impact it has on parents, on their emotional well-being.”

Michael and Paul have found their coping mechanisms in each other. Initially they planned that Paul would stay at home whilst Michael worked. However, after it became apparent that he was drowning in appointments and facing an overwhelming daily battle to try to keep on top of their busy household, as well as dealing with the huge disruptions that come with all medical emergencies, Michael gave up work also. The reality is that to meet the needs of all their children they were not able to simply be parents but they had to both become full time carers. The day to day life of a parent carer is hard. Indeed as Michael explains, it can actually be far easier to leave the house and go to work every day than it is to care for complex children like Levi and Lucas, not just daily but 24/7. Here too they are able to find support, comfort and relief in their shared, dark sense of humour.

“We take the p**s out of ourselves, and out of the situations we are in because humour is our medicine. It really, really is! No question about it, it’s bloody hard work. It’s emotionally draining, physically draining and mentally draining. But I think there is no choice, so you get on with it. You can’t mope about dwelling on things. So yes, we absolutely have our bad days where we feel like we can’t cope and that whatever we’re doing is never enough. But you can’t get into that way of thinking, because if you do you can’t get out of it.”

Not allowing yourself to become mired into a negative way of thinking does not mean not talking about it. It does not mean you can’t acknowledge and accept that it’s hard or ask for help. Rather it means being honest about all of those things.

It’s about saying that yes, life can be hard, for all of us, but especially for parent carers. If you can try to make life fun, to work together, and to try to find happiness wherever you can, then you can get through it, and your loved ones can thrive in their own, unique ways.