By Katie Lorandeau, Family Advisor, ND Project, Suffolk Family Carers
October was ADHD Awareness month, so I thought now was the time to write about ADHD and my experience of it. So, what is ADHD? ADHD stands for attention deficit hyperactivity disorder. In the Diagnostic and Statistical Manual V (DSM V) ADHD is listed under the heading ‘Neurodevelopmental Disorder’ and is defined further in to three different types of ADHD dependent on whether symptoms are predominantly inattentive, hyperactive/impulsive or a combination of these. ADHD feels different for each person. This video explains a bit more about What’s it like to have ADHD?.
My first experience of ADHD was many years ago as a teenager playing with my younger cousin, and listening to my Auntie explain how she had to talk him down from the lamp post. He was always full of life and great fun to be with, but I also remember hearing my Auntie explain to my Mum how, despite being a nurse, she had to fight to get the doctor to listen to her, eventually he received a diagnosis of ADHD and started medication to help him concentrate and manage at school.
Fast forward many years and I found myself in a similar position but our ADHD journey was unlike any other. When my Son was a toddler, I knew there was something unique about him, he was not like most toddlers but having the knowledge and experience in child development and child psychology I had gained over the years, I kept it to myself not wanting to project anything on to my child. Eventually his Dad came out with the comment ‘surely that’s not normal for his age anymore?’ My first thought was ‘finally!’ someone sees what I have been seeing all this time. We agreed to talk to the Health Visitor about our concerns as he was also developmentally behind according to his Wellcomm assessment.
Although we had concerns about his behaviour, at this point the idea that he might have ADHD had not crossed my mind, all of my children have been very active, inquisitive – I taught the older two how to go leaf kicking, have fun in the rain and climb trees and they taught the youngest, and the majority of toddlers are impulsive, hyperactive and lack attention. After gathering as much information about our concerns, together with observations to support our concerns, the Health Visitor referred us to a Paediatrician. Despite my Son being a very active child, the idea of ADHD still had not crossed my mind. One paediatrician’s appointment later and we were referred to Paediatric Cardiology where he was diagnosed with ASD (Arterial Septal Defect). As you can imagine all of our concerns about his unusual behaviours were put on hold. About four to five months later we were down in London at The Royal Brompton Hospital to have the two holes in my son’s heart repaired (ASD repair). When we arrived the Doctors and Nurses kept asking us about his symptoms and who was monitoring him at our local hospital, they could not believe that he had never shown any signs or symptoms, he was not lethargic, he in no way lacked energy, got tired easily or turned blue. The only reason the defect had been picked up was because the Paediatrician must complete a routine check, including listening to the heart, and referring every heart murmur for a scan as a precaution.
So, you are probably wandering ‘When did they think he had ADHD?’ Well after the operation we were discharged the next day and told for the next few weeks he needed to rest, TV, DVD, stories and cuddles, nothing to strenuous and to not let him over do it. This was music to my ears, I was eight months pregnant at the time and had just had a very sleepless night in a hospital chair and a long drive home (I was glad it wasn’t me driving). The next morning, I took my eldest to school and prepared for a chillout in front of the TV with a day of cuddles. Boy was I wrong! The second day after his operation he was bouncing, and I mean literally bouncing, off the walls, off the sofa, I could not get this child to sit still for anything. The only way to describe him was like the Energizer bunny, but with extra energy and it was down to me to get him to calm down and sit down before he popped a stich or disturbed his device. I was fighting a losing and somewhat exhausting battle. From there on he never walked anywhere, he always ran, luckily, from a young age I had taught him to stop at markers, stop at the next lamp post, I had also taught him that if he couldn’t see me, he had gone to far. I used to say ‘If you can’t see me then I can’t see you and that is too far.’ I learnt very quickly that if I tried to run after him, he would run further and faster, but calling stop at the next lamp post worked. And yet as most of us do I still doubted myself, I managed to convince myself that it was just me, no one else had noticed. It wasn’t until my Dad said to me ‘Do you think he’s got more energy since he’s had his operation?’ and I replied ‘YES! Yes, I do.’ Little did I realise that everyone else around him had realised it too, they just didn’t feel they could say it. Eventually we got back on track with the diagnosis and he was diagnosed at nine years old with Autism and ADHD. One thing I have learned is never to question whether my son has ADHD or not, because there is always a reminder waiting for me just around the corner, whether it’s climbing the side of my Sister’s house to prove he can climb in to the window that is part of the staircase or coming first in field running in P.E then continuing to run another 10 laps to support his friends to finish and not feel disheartened (or tired). I can often be heard saying, ‘If I could bottle his energy, I would be rich. Or at least have more energy for myself.’
If you think you child may have ADHD and are wanting to request an assessment it is important to gather as much information and evidence as you possibly can. You should speak to other professionals who are involved with your child and in particular the school. In Suffolk the process for seeking an ADHD assessment is through the NDD pathway.
As a Family Advisor in the ND team and Suffolk Family Carers I often have discussions with parents around ADHD and medication. Choosing whether to medicate your child or not is a personal choice. Medication for ADHD is a controlled substance and must be prescribed and monitored carefully by a specialist. I know people that have chosen to go down the medication route, I myself chose not to medicate and to manage my sons ADHD in other ways. We use visual aids, reminders and a timer to prepare him for the day or any changes. We have a number of activities he can do at home to use his energy, he will often ask for a walk when he gets home from school and during the winter months we do Yoga and he has an indoor Yoga/Sensory swing to hide, stretch and swing, although he does also like to be out in the rain.
It is worth remembering that although children with ADHD experience challenges they also have many strengths and talents
You can find more information and advice at:-
Resources Archive – ADHD Foundation : ADHD Foundation
Parent Carer Workshops | Suffolk Family Carers
Workshops for Family Carers | Suffolk Family Carers
Attention deficit hyperactivity disorder (ADHD) – Living with – NHS (www.nhs.uk)
