Best Interests

All of Joshua’s life, we have made decisions for him, that have not necessarily been easy to make. But our decision making has always been guided by the need to make choices in Joshua’s best interests. As early in his life as his time in the Special Care Baby Unit, we had no real choice but to go with the medical expertise of the doctors there; so when they said that he needed a painful lumbar puncture procedure, for instance, we had to accept their advice and consent. When at 4 years old, Joshua’s seizures became a problem, we accepted that he needed to be prescribed anti-epileptic drugs to try to manage them and he has been on a cocktail of anti-epileptics ever since then. There have been times when the side effects of the drugs have seemed to be worse than the seizures themselves, but consultants have recommended that he stay on the drugs in the best interests of his epilepsy.

Joshua began his education in mainstream nursery, then primary, school in our home town. As he grew older, Joshua began to spend more of his school day apart from his class, and studying on his own with his teaching assistant. When he was 8 years old, his teacher and the Headteacher suggested that a move to a special school would be in his best interests and so we began that process of looking around and choosing a new school. He was moved fairly quickly, leaving behind all that was familiar. The new Special School was a 45 minute drive away and once there, Joshua’s seizures took a turn for the worst and I was forever having to go and bring him home as he had needed his emergency medication and as they had no on-site school nurse, it was in his best interests that he go home. He spent much more time at home than in school and it reached crisis on 2010, when he was 9 years old during the Easter holidays, when he had to be flown to hospital by Air Ambulance as his emergency medication did not successfully stop his seizures. We were admitted to hospital for ten days while they tried to get his epilepsy under control. The only drug at that time which worked to stop his seizures was paraldehyde, which was so strong that it melted plastic syringes, but it was in Joshua’s best interests that it be administered rectally to him. After that horror, once we were home again, we agreed with the epilepsy nurse that it was in his best interests to move to a different school with a on-site school nurse, so we began that laborious fight, which resulted in an educational tribunal which decreed that a place at a Special School in a neighbouring LA area, would clearly be in his best interests. So in March 2011, when he was ten years old, Joshua moved again, to his final school, where he was educated for nine years, until lockdown.

In 2014, we made the difficult decision to opt for brain surgery as a radical solution to seizure control at Great Ormond Street Hospital. The prospect of allowing a surgeon to separate the two halves of his already damaged brain, was terrifying but the odds that we were given to become potentially seizure-free were so appealing, that we conceded that surgery was in his best interests. On the day before his 13th birthday, Joshua underwent a hemispherectomy and then began the slow, painful process of recovery.

When the Covid 19 pandemic hit in March 2020, my husband and I made drastic decisions in order to protect Joshua from the virus : we pulled him out of school, before national lockdown, as it was the only way that we knew to protect our vulnerable son. It meant that he missed his final months of school and any leavers celebrations, but we were adamant that isolation, at home with his parents, 24/7, was in his best health interests. So for almost two years, I became his full time carer as we lost school, Yorkshire Grandma’s help and respite all at the same time. I was furloughed from work to enable me to care full time and essentially we put Joshua’s health as a top priority over anything else, to the detriment of my own mental health and career. From last summer, we were asked if Joshua was ready to start daycare and I asked his respite provision if they could accommodate him again. His respite provision have, in common with much of social care, been struggling with staffing and so as yet, he has been unable to return. We finally felt ready to access his daycare place last month and although we were keen to send Joshua back into the world again, we have opted for a gradual introduction, first one day a week now two, as I felt that this would be in the best interests of his seizures.

As I have widely reported, Joshua’s first sessions at daycare have gone really well and a picture does say one thousand words, so I have delighted in the photographs that they have published on social media. I have shared them with my friends and family and have even shared one in this blog. I sent it to our social worker to show her how well Joshua was settling into daycare. Rather than being delighted, she queried whether these images were in his best interests, as he does not have the capacity to give his consent, as an adult. I signed a form at daycare stating that I was happy for Joshua to be photographed and for those images to be used in their social media, but it now seems that as his mother, I do not have the authority to decide what is in his best interests. But I ask you now, if we as his parents do not have his best interests at heart, then who has? Of all the many decisions that we have made throughout his life, they have all , without exception, been founded on doing what we thought was best for our son and this will never change as he needs are always put above our own.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s