ADHD - To Medicate or not Medicate - is that the only question? Plus Neuro feedback Therapy and the Right to Choose
I have previously written about my journey with ADHD from working with children who have the condition, to having my own child with these challenges. I've swung between the great debate that is nature vs nurture and subsequently found myself to be more inclined towards believing it's - how your nature is nurtured. This blog is a step on from my previous blog:
ADHD, My Son and Me. 10 things I wish I hadn't worried about and the 4 valuable lessons I’ve learnt!
And looks at the continuing journey we are on exploring medication, the Right to Choose, NeuroFeedback Therapy and other programmes claiming to support Working Memory and Executive Function, both of which are hampered by ADHD and explained in more details below.
ADHD, my son and me - where we are today.....
I've lost count of the endless articles, courses and numerous assessments we have done, all of which concluded that he is intelligent but not in a way that can (or is) measured by an academic setting.
Don't worry this is not going to be a rant at the educational system, his school have done everything in their power to support him and not every child can have tailored learning. Although we have tried with tutors, supplements, diet changes, read every book on the subject but we are still where we are, my son is 8 but in academic terms he is performing at two years behind his peers and he is beginning to notice.
He is happy in himself and still loves learning, however I am acutely aware that he will compare himself more and more to his peers and wonder why he is not able to read and write to their level. We realise that building his resilience and self esteem are key to enabling him to deal with this whilst keeping up his curiosity for learning but it feels like a fight against the inevitable 'why am I different' conversation.
We recently instigated an Educational Psychologist assessment, in order to support our 2nd ECHP application, gave us 28 hard going pages that told us how unique our son is and an anomaly at the same time - sitting in the top 1% for communication and vocabulary but the bottom 5% for Executive function which is a set of mental skills which includes working memory, flexible thinking, and self-control.
These are the skills we use every day to learn, work, and manage daily life. Trouble with executive function can make it hard to focus, follow directions, and handle emotions, among other things.
So what are our realistic options?
ADHD Medication - a journey from never to maybe!
When we set up The Canni Family it was to find a natural way to support Mr Canni with his ADHD. He had experience with ADHD medication and he found it to have its benefits but also significant downsides, so we wanted to see if CBD was an alternative and it certainly helped calm the nervous system which is pinging constantly when you have ADHD but it is also is not a silver bullet.
Having exhausted lots of other non-pharmacutical options and having always sworn we wouldn't go down the medication route, we have spoken to other parents and it seems like it could be a possible option!
However it turned out to be virtually impossible to get hold of as a result of the substantial increase in ADHD diagnosis, increasing the need for medication which is both expensive and controlled and this in turn has put a substantial strain on the NHS. This added to Labour's policy to take these meds away from GP practice control to specialist centres, starting in Essex where we live, has lead us to explore the Right to Choose option (where you can request to go privately via your GP if waiting times are more than 12 months).
Frustratingly this has also been a dead end as the waiting times for private prescriptions are just as long as the Community Paediatric departments waiting list so we have to wait until November 2025, at the earliest, to even be able to try it as an option. We already had the ADHD assessment and diagnosis in place so heaven knows how long a child would now have to wait from the initial application.
However in my heart of hearts we still don't want to medicate him, long term, not only because of the side effects but I also feel like I'm just doing it to get him through the school system which doesn't sit right.
As I explained in my previous blog, above, we have tried everything to help our son, even trained in play therapy and had therapy myself, as if you know anything about Epigentics (the evidence based fact that trauma is inherited from previous generations and is passed on in our DNA) we wanted to try anything that might help him get through school and have a future. Then something bizarre happened.........
Neuro Feedback Therapy - Is this the answer?
I was painting my kitchen listening to Peter Levine's 'An Autobiography of Trauma' and in the last chapter he focused on ADHD and said that since the 70's scientific research had been carried out on the long term benefits of a non-intrusive/pharmaceutical, brain wave therapy called Neuro feedback.
Anyone who knows me well will know that I have been searching for a direction to take the next stage of my career. I did a degree in Psychology (and Law but hated that part) and have always been fascinated by the human mind and behaviours and now my focus more recently has been drawn to trauma.
Neurofeedback is a kind of biofeedback, which teaches self-control of brain functions to subjects by measuring brain waves and providing a feedback signal. Neurofeedback usually provides the audio and or video feedback via an EEG and positively alters the Neuroplasticity of the brain. Read more
It has been scientifically proven to improve:
We are also looking at programmes that claim to help improve Working Memory and Executive Function and have decided on Brainfit - as that was the key learning from the Educational Psychologists Report that Working Memory and Executive Function need to be improved as a foundation and retention tool for learning. Pouring non-contextual learning like maths and spelling in, is like putting it into a sieve, its not that these children can't learn these things, you just need to address the core issues to enable the retention of this learning.
One request......please educate yourself before judging!
This is specifically directed at those people who are uneducated in these matters and who make no effort to be compassionate or understanding to the challenges these children and adults face.
My son has said to me on more than one occassion 'I have a terrible memory and I'm so slow' when I asked who said that to him I was shocked! I am not going to say who but this comment has had an indelible impact on his self esteem and this came from someone who was meant to be supporting not diminishing his capabilities. The frustrating thing is he may not be able to remember his timetables but he can tell you what compressed air is and can recall a memory in detail from when he was just 2 years old or give you a synopsis of a story he loved!
You would never dream of saying 'just get up and walk' to someone in a wheel chair or 'why can't you remember' to someone with a brain injury but there are things that are said and often repeated to people with ADHD that make them feel demoralised for something they can't control over.
Educate yourself before making judgements, a good start would be Dr Gabor Mate's - Scattered Mind - the eminent doctor and psychologist who just so happens to have ADHD himself, gives an excellent understanding of the condition. ADHD comes as a result of childhood trauma, in my sons case a lack of attachment in the early weeks of life due to hospitalisation for 6 weeks with limited physical contact due to being premature - did you know that most, if not all, children who were significantly premature show signs of ADHD in early childhood.
Research is also being carried out regarding the pain felt by premature babies due to the procedures they have to face whilst in incubators, receiving very little human contact and being out of the safety of the womb. Can you imagine how terrifying this must be for those tiny infants?
It is now commonly understood that those first few weeks of life lay the neuro pathways for how our brains will develop and respond to stimulus. The attachment (or lack of in this case like the Romanian Orphans) leads to things like the Executive Function and Working Memory (which like a muscle are developed through early childhood) being restricted by the trauma. Leaving these individuals unable to focus or concentrate, as their bodies have been programmed from birth to be looking out for dangers all the time and never being able to regulate appropriately to deal with all aspects of life. I am not saying I could have done things any differently when he was born but I can at least attempt to understand it!
ADHD isn't about laziness, defiance or not caring. It's about a brain that needs different tools and support. When kids with this condition are met with understating instead of dismissal, eye rolling or insensitive comments, they learn to trust themselves and communicate openly. This builds their self-esteem and emotional regulation skills.
So if you or someone you love has ADHD read it and try and be more compassionate.
In conclusion....
I am immensely proud of our son, he is a happy go lucky little lad with an infectious curiosity and great sense of humour. I will continue to do anything I can to nurture his innate curiosities, capabilities and skills, whilst hoping to educate those friends and family who he comes into contact with about ADHD. He may be last out of the classroom, unable to remember timetables or wait his turn before interrupting but being chastised for these things seem a little unfair and pointless when they are out of his control.
I will update this blog once I have completed my research and training in Neuro Feedback Therapy and I sincerely hope it provides a way to support not only my son but anyone else who struggles with ADHD and other trauma related issues.
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