Kelly and Heather both work at Communicourt and have 11-year-old boys who are diagnosed with Attention Deficit Hyperactivity Disorder (ADHD). To mark ADHD Awareness Month, they talk about the reality of how the condition affects their children.

Kelly’s story

People think they know what ADHD is, but often they know nothing more than the stereotypes of children who can’t sit still and are hyperactive. My son Gwilym was never hyperactive, but he needed to move to think. He spent a lot of time in his own head, his school called it ‘Gwilymland’.

My son struggled in school from day one, he was in a small village school and most of his teachers blamed his problems on him being lazy. When he curled up in a ball under the coats because he couldn’t cope with a lesson, he was called wilful. My husband and I knew something else was going on, and asked the school if they had considered he might have ADHD. They said his behaviour was a choice and spent years trying to punish it out of him.

By the time we reached Year 5, things were very serious. We had been waiting two years for an ADHD assessment and my son was broken. He was punished on a daily basis, made to stand in the playground unable to move or speak during break and dinnertimes, because he couldn’t finish work. He cried on the way to school, and was quiet and withdrawn at home. School had become a prison, and a conversation I had with him one night terrified me and made me realise he couldn’t take much more.

We paid for a private assessment when he was 10 and he was diagnosed with ADHD. The diagnosis was a relief, but that was short-lived. The school still didn’t take his diagnosis seriously.

ADHD is a neurological disorder, and as a parent it is a steep learning curve when your child is diagnosed. You have to work out how their ADHD affects them, and then help them find workarounds or coping strategies.

How ADHD affects my son:

• He cannot visualise the past very well, so he can’t remember what happened a few days ago. He makes connections and forms his own version of events. For example, if something happens on different days, but he is wearing the same t-shirt both days, he will think everything happened on the same day. At home we can work it out together, but at school he would be called a liar.
  
  
• He will go into the bathroom to brush his teeth and emerge half an hour later with his teeth still unbrushed and no clear idea of what he has been doing all that time. At home we can laugh about it, but at school his ‘daydreaming’ causes problems.
  
  
• He cannot visualise the future very well, which means he struggles to understand the consequences of his behaviour and often makes the same mistakes. At home we have the patience and understanding to go through it with him and help him to do things differently. At school, he would be punished again and again.

He is at secondary school now and seems to be doing well. He comes home exhausted at night because he spends so much time masking to make sure he fits in. He has school trauma but is coping well and thankfully is well supported at his new school. However, what could happen as he gets older is what keeps me awake some nights. It is so easy to see how things start to go wrong for young people when ADHD is undiagnosed, untreated, or misunderstood. My son’s primary school missed so many signs of his condition and they didn’t have the understanding or awareness of how his ADHD affected him. This is something my son will come up against time and time again.

I know, from my work with Communicourt, just how easily he could find himself in the criminal justice system. Research suggests 25% of adults in the prison system have ADHD. There are many reasons for this, ADHD can make someone more likely to engage in risk-taking behaviour. They may be more impulsive or find relationships and friendships harder. A child who feels isolated at school can easily look for attention and a sense of belonging in the wrong places.

ADHD is often called a superpower, but that has never sat comfortably with me. My son does have some superpowers, just not the kind that are going to make the front page of the Daily Planet.

• He can talk for several hours on one topic without hesitating, or as it often appears, taking a breath 
• He can sit next to me, watch my mouth moving, hear my words and yet genuinely not hear a word I have said
• He can find a series of noises and repeat them endlessly, taking me from calm to full of rage in record time
• He can get lost in a bathroom

He is also very funny and great fun to be with. Being diagnosed with ADHD gave my son an opportunity to understand himself better, and medication gave him a chance to quiet his mind and focus on things he needed to do. His diagnosis didn’t make him a superhero, he was already pretty amazing. It just gave him a chance to understand himself better and be accepting and comfortable with who he is.

Heather’s story

My first experience of parenting had been my daughter Amelia, who I might add was an angel. So, it came as a real shock with my second child, Liam, when his schoolteacher was adamant that there was something wrong with him. At the time, he was three and we were all living in Spain (they start school early!). His teacher told me his behaviour in class was not acceptable. I asked what he was doing that was so wrong and I was told that he couldn’t sit still, he couldn’t concentrate, and he kept crawling round the classroom like a cat.

I put this down to him being a three-year-old boy and made a mental note to speak to his paediatrician at his next review. His paediatrician echoed my thoughts and said there were probably too many students in my son’s class.

However, as the years moved on, the summons to see my son’s teacher increased dramatically and things went from bad to worse. His teacher was insistent that he needed medicating. Eventually, I was called to a meeting with the headmaster, two SEN teachers (who had not been asked to assist my son) and his teacher. Long story short, in hindsight, his teacher was clearly suffering with her mental health and the fact that my son couldn’t sit still tipped her over the edge.

She vented her frustration by telling anyone who would listen about his bad behaviour, including standing on the tables and tipping them over. I challenged this in the meeting and asked for specific instances, and after much ranting to try and get her point across, she admitted that he hadn’t actually done these things, but he could have. I put in a complaint to the headmaster but unfortunately, by this stage, the damage had been done and the other teachers (and even lunch monitors) treated Liam so badly it was verging on bullying. Liam hated school, and he was becoming a very unhappy and morose child who couldn’t understand why mummy had to work and couldn’t stay at home with him every day. Liam would cling to me in the evenings and hated going to bed alone. The mornings were stressful and trying to get him ready for school was a daily battle.

During this time, I made several visits to Liam’s paediatrician, who said his teachers and I could complete forms. These included a rating system from 1-5, to assess his attention, ability to focus, reading, writing skills etc. At this stage, there wasn’t much else they could do and the waiting list for an assessment for ADHD was long. I was reluctant to medicate him as I had read about a lot of negative side effects from medication such as Ritalin.

At the age of six or seven years’ old, Liam moved up to the equivalent of primary school and had a new teacher, fortunately one of Amelia’s old teachers. She was very understanding and didn’t want to pressure parents to medicate their children. She tried her best to keep Liam focussed. We saw a glimmer of light at the end of the tunnel, but it was short lived. As children get older, the homework increases. By the time Liam was getting home from school, his attention span was less than a mosquito’s. He would physically sob most afternoons, trying to get his homework completed.

Early in 2018, Liam was called for an ADHD assessment, which essentially consisted of him drawing a picture while I had a conversation with the consultant. We walked away with a prescription for Medikinet for Liam’s ADHD and Melatonin to help him sleep. I was not pleased but, by this stage, had other issues and needed to try something.

To be honest, the Medikinet was a Godsend. Liam did not need the Melatonin as the medication had worn off by bedtime.

In 2019 Liam and I moved to the UK, and I managed to reserve him a place a lovely village school. The difference in attitude towards children with ADHD and other neurodiverse conditions in the UK compared to Spain is like night and day! I am pleased to say that Liam has gone from strength to strength since being back in the UK and has recently moved up to secondary school. I had a meeting last week with the SEN department and was told that his teachers weren’t even aware that Liam had ADHD and that he was doing really well.

Over the last nine years I have learned so much about ADHD and other neurodiverse conditions and learning disabilities. However, it hasn’t been easy and I feel there is still a lack of information for parents and patients alike. I have many friends who think they might have ADHD, but they have no idea how to go about getting an assessment. It would be great if awareness could be raised and help could be more widely available in the future.