By Kiranjeet Chaturvedi
(Kiranjeet Chaturvedi is an author and columnist based in India. Here she writes about the relief of having a diagnosis of ADHD for her son's presentation . She believes it is very important to have a name for what we face, and it is the first step to better coping, better outcomes).
Today, my son turns twenty-one. Two weeks ago, he was assessed as fitting the criteria for an ADHD diagnosis.
Nine years ago, my daughter, then aged five, was diagnosed with Sensory Processing Syndrome (SPS/ SPD) and the name frightened me so much. I had known she was different, of course. Anyone who interacted with her for a few hours could see that. I wanted to be given solutions; ways to fix whatever was the matter with her. Instead, what I had was a label, and was told she was wired differently, and this difference could not really be ‘fixed’ (it is likely a genetic thing) to make her like everyone else. The difference would remain, but we could learn to know it, and to manage it effectively, for outcomes that were best for her.
I knew nothing of this condition. I balked at what lay ahead. I was fearful. Why us? Why her? What does it mean? For years, I could not speak of this to many people. A strange reticence marked me, made me almost a recluse in mommy circles. Slowly, however, I learnt that labels are not to be feared. They can be a gateway to better things.
The label of SPS has over the years become scaffolding that holds us on track. We weigh decisions, and make choices in the light of its reflection. It is the lens to see the world and its challenges though my daughter’s eyes. It helps me to stand in her shoes. It is no scary thing. It also gives me a community to relate to, a range of resources to tap into, which would have been outside my consideration but for the label.
It gives a context to therapy sessions to be attended, with her different therapists. It explains the history of her sleeplessness, her bouts of seemingly unprovoked crying, her textural and taste sensitivity, her odd graph of developmental milestones, with spikes of ability in some areas and a lag in others. Speaking of it to her peer’s parents, to her teachers, to my peers, made it easier for them to understand her, instead of maybe seeing her as someone ‘weird’. Well, they might still think so, but they have been given the option not to do so. J
Today, it matters not what name her ‘difference’ has, and we rarely need to use the name of her condition. But it was the identification of the difference, and what it told us about supporting her, which was vital for all of us. From being a child with proprioception issues (among many other things) - who is challenged in making sense of the body’s placement in a physical space, she is today a state level gymnast, who will be playing in an international open tournament in Dubai later this month. The naming took her story in a new and better direction.
Naming something, especially something unusual, different, and unknown, is one way to speak truth to power. It brings to light what needs facing, as against the brushing of inconvenient truths under the carpet.
And yet, the brushing away kept on happening with my son, who is older to my daughter by almost seven years. He had issues in behavior regulation, with impulsivity, with hyper activity. But he was also super bright in school, and socially a charmer. A ‘good boy’. His erratic, uneven performance in school on subjects he was gifted at, was explained away by teachers as lack of hard work by an over bright child, who knew he would get away with it.
But I knew he worked very hard, harder than required from someone with his high IQ. He was troubled and puzzled by the inconsistency in his sense of his own potential, and his reality. After a particularly harrowing experience in an exam, I asked my daughter’s occupational therapist for help. He offered Brain Gym classes. They helped. I suggested going to a psychologist. The son, a late teenager by then, refused. He was perfectly normal, why did I insinuate something was ‘wrong’ with him?
Family members hinted that perhaps I was the one who needed to look at myself. Why was I being so neurotic? Why did I want to pathologise my own child? Was it because I was unable to handle him? Why was I unable to handle him? Why was I hinting at all those terrible ‘labels’ to brand him with? Why was I being a Tiger Mom?
Another way names are powerful. To keep you from bringing up other names.
I wondered if I was over reacting. Being over critical. I saw articles about the ‘myth of ADHD’ or the ‘myth of Autism.’ I armed myself with all that I could learn. I went to parenting workshops. To self-improvement seminars. I read books on
Psychology and Neuroscience, delved into child development and adolescent behavior, leaned to spiritual gurus, examined my parental emotions – the sense of disappointment, loss, anger, as well as the love, compassion, empathy, joy and companionship with my children.
All along, there was the nagging guilt, doubt and fear.
Despite all the effort, why could I not ‘get’ my children? Why, when he was so clearly very intelligent, could my son ‘forget’, lie and be so aggressive and ‘out of control’ for no reason? How could he get into a state of panic without a real provocation? Why did he get ‘triggered’ by stimuli we barely notice? Why could he just not get a grip on himself? Where had I gone wrong where had I pushed him to a break point? What were we missing? What did we not understand?
I knew my son was different, but I had no name to categorize this difference. It was clear that he, just like my daughter, processed things differently from most of us. In another time and place, in less competitive, less standardized social and community life, and work places, it may not perhaps have been such a big deal. Say on a farm, or in a community of craftsmen. But there is no place for difference to be accommodating after a point in our hyper competitive rat race kind of lives. We are becoming more and more a very cookie cutter society- at school, at work, even in the community. There is less space for divergence of performance and ways of seeing and being in the world.
Neurodiversity is a concept not many have heard of or seem to care for. I firmly believe the differences in our ways of being are not ‘new’ nor are they ‘disorders’, by any means. But the order we have created today makes them stand out much more. At the same time, the kind of knowing we have today, also gives us tools to cope better. If only we will first say the name.
With denial, without a name, we give up on solutions. We make a difference into a disability.
Eventually, my son’s ‘difference’ came to the fore in a scary way, once he started living on his own in college campus in America, three years ago.
It has been six months since he has been back home, on a break from his undergraduate course in America. He had to be taken to the Emergency twice in the last two years, due to PVCs (pre ventricular contractions) and panic attacks. I had to fly out to be with him after a phone call when we talked him out of a panic attack last April, when he repeatedly complained of severe PVCs and insomnia.
We came home together, after his exams for the summer break. He was tested for deficiencies, for cardiac issues, for neurological complications. Blood tests. Scans. Holter monitor. Nothing out of the ordinary showed up. After a long and enjoyable summer at home, he opted to return to campus for his junior year. He felt he would change a few things around and he would manage fine. He would work harder.
We kept our fingers crossed.
At first, things seemed to go well. And then very quickly it was a replay of the spring crisis. The panic attacks were back, though much less severe. Grades started slipping again. Submissions were falling behind.
There had been a change of professors, and the new teacher wondered if there wasn’t something more to this matter than met the eye or the medical tests so far conducted. He suggested a break from college for his student, to reassess what was the issue and what could be the way forward. We couldn’t agree more. It was time to pause. My son was hesitant at first, but finally he agreed to take a break.
ADHD is a name of what his troubles are, we learn, after four months of assessments, interviews, and tests at different places, with a panel of various professionals. The term describes a certain range of behavioral conditions clubbed together as the Attention Deficit Hyperactivity Disorder.
Not all cases that fall under this label show all the signs at all the times. Research indicates it to be a biologically based neurodevelopmental condition, though controversial claims are made of its non-existence. The charge of over-pathologising the incidence of it, and over medicating children to make them more ‘manageable’ may or may not hold much water; but surely ADHD - (or, more pertinently, the symptoms that fall under it now) is no myth and no modern invention of greedy doctors/ therapists or big pharma. Nor is the lack of lab tests like blood test for malaria etc. any reason to deny the condition or possibility of help to those who clearly are differently wired and yet capable of functioning well in the world with the right support.
In my daughter’s case, I found it so much harder, before, a frame of explanation, to not get personal, and emotionally enmeshed in reacting to ‘difficult’ and ‘different’ behavior that was not intentional, personal or targeted at me. One tries, of course. One looks for understanding, one pulls on all the reserves of a mother’s love, human compassion….. But it can feel like the blind searching for clouds in the fog. And with my son, the fog stayed for so long. The day we had a diagnosis, I felt a sudden shift.
With a name, there is a pattern to all the chaos, a clearer, more structured path. The same wealth of reading, different meaning. When I search for the same old issues, I type different words in the Google search bar, and I get different, more pertinent answers. The relief makes me laugh out loud at times.
Without a name for something, talking of the traits that make someone different can sound like whining, complaining or offering excuses and cutting corners. Or it can invite all sorts of mis-directed labels and advice, which you are ill equipped to counter. I did not want to make my children sound like bad behaved brats, nor sound like a mother who was a hopeless failure. And yet, there was at times just no useful way to frame our experience, and to work out solutions that did not feel like a gigantic leap of faith alone.
A lot of times, naming does not come easy. And all names are not equal. It took us all of my son’s childhood and the first few years of his adulthood to finally arrive at this point. Collectively, as a society, we want only some things named, and some things left unnamed. We want inconvenient truths to be brushed under the carpet. But in no way does that change reality; it only piles up the mess, layer upon layer, till one day it could likely roll back at you all together, drowning you in even further helplessness.
Names give us a more manageable mental model of the named. And thus, also make possible a better-structured response.
Naming something can free you from misplaced expectations.
“Why won’t you just get it? Try harder.”
Fact - He cannot. He is wired differently. But, he can be helped. There is name for this.
Naming things makes you free to let go of unwarranted rage.
“You are just lazy, and irresponsible. I am ashamed you are my son. ”
Fact - It was not his fault; he did not do it intentionally. With practice, he can learn to be more self-aware, and regulate his response better. There is a name for this.
The relief a name provides is like being offered a seat in a lurching, heaving bus on a twisty mountain road. Suddenly, the bag of unidentified load you have carried for years, not knowing why and where you are walking with it has been taken off your shoulders. You feel your back relaxing. You let yourself sigh, slow and long.
After twenty-one years, we finally have an explanation for what my son goes through, for why he does some of the things he does. It tells us why he is perpetually in a flight or fight mode, why he reacts to sudden shocks the way he does, why he seems to have a fuzzy mind at times which he can do not much about. It not only explains all this and much more, it also gives us tools, and tells us what he can do to empower himself to deal with his condition. It also tells us to stop looking at the red herrings, it steers us off mis-directions.
The cardiac surgeon who managed my son’s Holter test and follow up told him there was nothing wrong with his heart, but he did hold his upper body very tense, which stressed his muscles and ligaments. He asked him to correct his stiff and tense posture, and to not hold his muscles so tight. Anxiety is a co-morbid condition in many ADHD people, but not knowing you have ADHD while living with its debilitations is guaranteed to create more anxiety. Tense posture, tight muscles, then are very much part of the deal. Better understood is better dealt with, I believe.
Knowing that there is an explanation for his differences frees up emotional and mental energy to tackle the issue in more constructive ways. I feel it also frees up my son from the grip of unproductive self-sabotaging ways of coping. He says he feels disheartened to have a label (it is early days yet, and he is still processing this, after years of denial), which says he is not just a ‘regular’ guy. But he also admits it does offer some explanations, and a better way forward. It offers a concrete plan of action, and I can see a shift in him even while he copes with the initial resistance to his label. I think of myself with my daughter’s diagnosis nine years ago. I remember my initial reaction, and what came later.
I had thought my son would not want me to write this article. I asked him about it. He didn’t hesitate a moment. “Sure, write it Mom.” That itself is a sign of change. We do not know the journey ahead, but we know that it will be a brighter lit path we walk on from here on. Having a name for his condition does not change the condition. It changes the way we can deal with it. And that is a world of difference.
First Credit - This article first appeared in the online magazine DailyO http://www.dailyo.in/voices/adhd-parenting-sps-health-neurology/story/1/17000.html
1000 lbs limbs,
Unable to move
Even with the medications.
Fourteen hours in bed
and you wake up exhausted.
Shower if it is a good day.
It is debilitating.
No employer wants a truant.
And so you drink when you can.
To fill the hours.
So as not to think or feel.
I am sorry to be so depressive all the time,
but my previous humour escapes me.
It is not that I don’t want it back.
Oh to laugh and laugh
The ribbed sides hurting again.
Like a mountain
just before an avalanche.
(Ryan Quinn Flanagan is a Canada based poet)
Praised be the God of cats,
Purring mightily in contented bliss
( Both cats and God, that is!)
And the God of squirrels,
Darting cheekily in branches
Thrusting forth new energy
To the cloud tossed sky.
Blessed be the God of puddles,
Gathering and displacing
Calling the child within
To splash, and sense, and feel.
Not forgetting, never forgetting
The surge and streams
Of living water
And the God who laughs,
Crafts, flows, splashes in mischief
And pulses in mystery.
Our God is no tame God,
Nor Aslan, great Lion,
Tamed by Passion and Rising.
Yet the wild God-streaming waters
Can be claimed, named,
Prayer and plaything,
Promise and peace.
Blessed be the God
Of our womb waters,
Sourced and centered
In wellspring of love.
Blessed are we,
In the God who makes cats:
God’s lap ever open,
God’s hand soft to touch
Praised be the God
Who makes all things that call us,
Purring, dreaming mightily,
In creation breathing bliss.
NODDFA FEB 2010
The Beautiful Space-