A Butterfly In My Pocket – Living With ADHD

What is ADHD?

“A…D…H… what”? used to be the standard response to my explanation for my son’s behaviour. Now it’s more like, “Oh yes, I know about ADHD – that’s badly behaved kids, isn’t it?” I did think we had moved on a little these past ten years – sometimes I wonder!

Attention Deficit Hyperactivity Disorder affects some 2-10% of the population depending on which side of the Atlantic your research comes from. It is a highly treatable and now more easily diagnosable condition which research has shown affects the frontal areas of the brain. Some parts of the ADHD brain are actually smaller than normal brains and people with the condition have difficulties in a number of very challenging areas which affect all aspects of their life.

Living with ADHD

I have lived and worked with ADHD for over ten years. My 16-year-old son got his GCSE results today and his success, I believe, has only been possible due to early recognition and treatment of his condition.

Life with ADHD could be described as like living in a tumble dryer on reverse-cycle. In a lecture I once described living with my son as being akin to co-habiting with three giraffes on speed! We have our good and bad moments and then we have our moments of pure exhilaration and deepest, darkest despair.

ADHD can be the cause of family breakdown. Its cause is known to be around 85-95% genetic. In other words, if your child has been diagnosed, then it is highly likely that you or your partner has the condition itself.

The cause is never, ever due to social issues. This has been refuted by many studies on twins with ADHD, so sorry, folks, (especially those in the “just give ‘em a good smack” brigade), you really can’t put it down to bad parenting!

ADHD children aren’t stupid. They just have problems “doing what they know”. They know what to do. That’s the problem, you see; they are often highly intelligent, lively children, but they sometimes cannot access the areas of the brain which enable them to make good, carefully thought out choices.

We used to call it Foot-in-Mouth-Syndrome, and it was quite cute when my 6-year-old pointed out, “Why is that lady so fat, mummy?” in a piercingly loud voice. However, when your 16-year-old is punched in the face for telling a night-club bouncer, “You’re so fat, by the time you turn around it will be next Tuesday,” it somehow takes the cuteness out of the equation. In technical terms this is known as ‘Poor Sustained Inhibition’. In my son’s terms it is known as “Ouch – I shouldn’t have said that should I?”

When he was small and flying around the house or supermarket, I just wanted to scoop my son up and keep him safe in my pocket – feel him fluttering around knowing he was safe from disapproving teachers or tutting shop assistants. He never understood what he was doing wrong, you see. It was heart-breaking.

ADHD kids seem to have a drive to push themselves to the limits. They don’t know when to stop. They love the thrill of confrontations and the excitement of almost being caught.

Apparently ADHD makes up over 50% of all referrals to child psychiatrists. The fact that it drives parents totally out of their minds as well probably makes up the other 50%. It affects two million children in the USA and there is approximately one ADHD child in every class of 25 in the UK.

These make for sobering figures, especially when you consider what the outcomes of undiagnosed and untreated ADHD can be in teenagers and young adults.

Treatment

The treatment of choice is currently stimulant medication. Ritalin is usually tried first as it has the highest success rate. Stimulants are controversial but it is unfair on children to withhold treatment that usually works well, has minimal side-effects and can prevent them from failing at school, falling into a life of crime (some 85% of untreated ADHD teens report handling stolen property compared to 64% non ADHD teens) and being marginalised by society.

No parent willingly gives medication to their child. It’s a huge compromise but it often makes such a dramatic difference that we come to terms with it. I cried and cried after I gave my son his first dose of Ritalin – cried for him because I so wanted it to work and cried for me because I thought I had failed. How wrong I was……..

ADHD is a chronic disability. These children are really difficult to live with and teach, they often have sleep difficulties (50%) and are impulsive and can be overactive. I believe if you can parent an ADHD child successfully, then you can parent any child.

I used to feel that I had failed as a parent Why wouldn’t my child sit still and listen? Why was he so aggressive towards other kids and never invited to parties? Why did he seem to have no sense of danger? Once we had the answers and the knowledge, then we could begin to work and make things different for him and us as a family.

Alongside medication, behaviour support is vital when working with ADHD children and their families. However, this has to be in place for a long time, as research has shown that as soon as the behaviour programme is withdrawn the difficulties return. These programmes have to be in place for many years until the child’s brain has matured enough to make better choices and think about consequences. In the UK we are actively training ADHD coaches to work with ADHD children and their families to enable them to find ways around their difficulties and lead successful lives.

My butterfly is almost ready to fly. I have high hopes for him and we eagerly await his results. He can’t live in my pocket forever, protected and contained in a safe place. He has to go out into the world, stretch his wings and explore. My greatest hope is that he finds peace and happiness, that he learns to manage his life-long condition with dignity and has pride in his achievements. He won’t have an easy life but hopefully, the more people who understand his disability, the smoother his flight will be.

Footnote

Finally the waiting is over, the loaded sighs and drawn out silences when the thorny issue of “possible alternative placements” to the current school (who have been tolerant yet ill-informed about his difficulties) are a thing of the past and I now have a son who is the proud owner of 9 healthily graded GCSE’s!

The fact that I stalwartly fought for extra time in the exams which he – to my horror declined to use (“What do I need that for? I’ll just leave when I’ve finished”) started to simmer once more in my mind as we arrived at school after a drive heavily loaded with apprehension. The poor boy couldn’t even get out of the car. He knew the implications of poor grades and he doesn’t ‘do’ change well, so the outcome was more significant for us than for many others.
He couldn’t open the envelope. I couldn’t open the envelope. Then the suspense became too much and his impulsive traits took over at last.

The words blood, sweat and tears could flit through my mind, as this is how his results were achieved, but no – as a coach I re-frame his remarkable achievements in a more positive way. My son is in the top 2% of his peer group for intellectual abilities (though I’m sure the aforementioned bouncer would politely disagree). However, getting him to be motivated and focused on such irrelevances as Poetry and French have been a real challenge! Having a sneaky cigarette behind the gym has proved to be much more engaging.

We set targets, we were in constant contact with his tutors, we bribed, blackmailed, cajoled and used every single behaviour management tool in the book. And believe you me, just when you think it’s safe to come out of the behaviour management tool kitchen, it’s not! i.e. when you stop using them they stop working. The exasperation, threats of permanent exclusion, the disappointment and frustration of a disability that just won’t go away have taken their toll.

As I write he has spent the sum total of seven minutes in our house since he got his results. This is how long it takes to ask me for money, straighten his hair and grab a clean but un-ironed and slightly damp pair of jeans from the airing cupboard. He’s a normal 16 year old boy in many ways, thank goodness.

But he’s done it – got great grades from Higher Tier Exam Boards and is well on the way to becoming a fully-subscribed member of the (“When can we go out and get my new suit, mum?”) Sixth Form.

Jan Assheton RGN RSCN is an experienced Specialist ADHD & Asperger’s Performance Coach, the founder and director of Reach Coaching – an ADHD Coaching and Training Consultancy in the North West of the UK. Jan works with a number of organisations including Liverpool City Council, Young Minds, Social Services, Schools and Primary Care Trusts and accepts referrals from a broad range of agencies.

Jan trains ADHD coaches to work in a highly specialised, focused way with clients, setting goals and targets and addressing core issues caused by deficits in executive function – impulsivity/hyperactivity and inattention. Much of their work done with adult clients is undertaken over the phone and by email, though coaches do work with clients and their families in face-to-face sessions. The aim of ADHD coaching is to enable enhanced understanding and management of the traits, challenges and gifts that ADHD presents.

For details of ADHD coach training or if you would like to know more about ADHD coaching please contact [email protected] or www.coaching4adhd.co.uk.