The first noticeable difference was that he never switched off and seemed to need very little sleep. During the nights my husband and I would take it in turns to stay up with him. Yes, you expect this when they are a baby, or even teething when a toddler, but this went on for years until we were able to give him melatonin prescribed by his paediatrician!
We were given constant advice saying try this or that, or assurances that he would grow out of it, which only aggravated us and made us feel like bad parents. I tried not to compare Louis to our older son, who seemed to progress into every stage easily. When Louis was a toddler he would run about endlessly, and nothing would entertain him for more than 60 seconds. He had no favourite toys or games. I remember walking through woods and fields with him hoping he would have a nap afterwards, or taking him out to play-barns and swimming, but there was no relief when we got him back home again.
Louis started school at just over 4 years. He had speech delay and wasn’t really talking in full sentences. Looking back, I wish I had delayed him starting school, or even not started at all. His first year (reception) was very hard, always in the headmaster’s office and being treated like a naughty child, with him clueless to understanding what he had done wrong. They would make him face the wall and he would re-enact his day when he got home. Yes, alarm bells should have rung, but we kept thinking “it will get better, he will settle”, and put our trust in the teachers, believing they knew what was best for him.
We soon noticed a change in Louis. He became aggressive towards us and his older brother. After his first year we decided to change his school. His new teacher seemed more understanding and instantly got him a wobble cushion, so he could sit down for longer periods with the other children. They would arrange for him to go first or last to the cloakroom to retrieve his coat, as this was where problems would often arise, and he would bang into the other children through lack of concentration. It was through little things like this that we felt relief, and were just happy that he wasn’t being told off all the time.
At seven years we received Louis’ diagnosis of ADHD/SPD and a working diagnosis of ASD. In year 3, with increased demands from school, and with Louis nearly two years behind academically, his anxiety hit the roof. The moment I would pick him up from school the meltdowns would begin, the offloads, the aggressive behaviour, to the point where he would pull out kitchen knives and threaten to kill himself or sometimes me. With a 6 month waiting list at CAMHS, we decided enough was enough. It was all mounting up, with the weekly trips into the school office to try and explain to them how Louis sees the world. It pushed us to mental and physical exhaustion.
We made the decision to remove Louis from school and home educate him. He had not made any friendships, he was violent towards us and his siblings, his sleeping was poor, so we really had nothing to lose. Taking my son out of school made me realise how far behind he was, not being able to read or write. At first, he could not sit more than 30 minutes to do any learning, but we gradually built this up to 60 minutes of learning time, and always in the morning when his concentration is at its best. We have started back at the basics, and being in a relaxed environment he seems to retain more. We try to learn out in nature and keep demands at a minimum. We have found this has reduced his meltdowns massively.
I can’t say it’s been an easy journey, we still get bad patches where we are learning every day, and I still have massive amounts of guilt. Was I a good mother? Did I do something during pregnancy to cause this? What long term effect will it have on his siblings? Yes, our lives have revolved around Louis. Which type of holiday will he cope with? No, we can’t eat in the restaurant with all the noise and lighting! He won’t be able to queue going on the rides, so we can’t go there!
It takes massive amounts of energy and management to keep our days calm, but we feel this whole experience of life has made us better people. Yes, I was once that mother with my one perfect child who judged others on their parenting skills for their difficult child! I believe others cannot understand how it feels or what it’s like having a child with ADHD unless they have also gone through that same experience. Yes, we became bitter, angry and frustrated at people for not understanding, but we have left the bad experiences behind.
I hope there is an increase in awareness and training for teachers. A lot more needs to be done to help these children and their families at an early age, not years down the line when they have struggled, and families fallen apart. ADHD still seems to be a hidden disability that many struggle to understand, and we still have a very long way to go in understanding and accepting it and making change where needed.
By Rebecca Hopkins, mother of three.