Do you ever stare at your kid in disbelief and ask questions like:
Why does he screw up school?
Why can’t he be more like Jay or Jonah or Jade?
Should I have given him a J name?
Why does he hate sports? And tying his shoes? How come he hates a hug?
Is it me?
Does he just hate a hug from me? Where did I go wrong? How did I fail him?
OK. Deep breath… Ommmmm.
WTF IS WRONG WITH MY KID??!!!
“Typical teen” I hear you say… “It’s just an attitude”… “He’ll grow out of it.”
Or the opposite:
“Maybe he’s on drugs?”… “He looks tired”… “He looks stoned… a lot.”
Well. Yeah. Sigh.
Maybe similar scenarios sound all too familiar for parents of many teens. But I know for certain that my son barely ever smokes pot or drinks alcohol; that whatever attitude problems he does have are defense mechanisms; and that other parents, likely about 1 in 20, are walking around with similarly vexing questions, for which there probably exists a better answer.
I first put these questions to paper when my son is thirteen, 3.5 months before he turns fourteen, five months before his private high school in Johannesburg “suggests” their institution may not be the best place for him:
May 30th, 2013
Dear Mrs Bush,
As we approach the end of the year it becomes ever more critical that we reach some agreement and understanding about Zak and the best…(blah blah blah blah)… He is certainly intellectually capable of good achievement… (blah blah blah)… I believe that we are at the limit of our capacity to serve Zak productively (blah bla…)
… we highly recommend you do everything possible to find an alternative educational setting for Zak for the coming school year.
Oh! My! GOD!!!
I’m in his principal’s office unable to hold back the tears, while we discuss Zak’s future – or lack thereof – at the school. I’m still in shock.
I can’t really hear: tinnitus.
Or speak: choked.
Or stop shaking: panic attack.
This is the most expensive school in the country, known for providing “fabulous learning support for students with any mental or physical challenges requiring assistance”. If this school isn’t equipped to help my son graduate high school, what institution is???
WTF IS WRONG WITH MY KID??!!!
It’s August 2012 and we’ve just moved to South Africa. I choose the American International School of Johannesburg (AISJ) because of its amazing academic accommodation and support services. I don’t know that Zak has a disability. I just know he leaves middle school in Toronto behind, having struggled to complete homework projects, despite being enthusiastic and having really complex and complete ideas that he articulates well.
Knowing Zak faced challenges in his middle school, he’s registered for Resource, the school’s academic support and accommodation services unit. It’s even considered a course, for which he’ll be graded and get credit. Resource has its own chill, lounge-like learning support centre with its equally chill and ever so helpful staff.
Zak is assigned Des Maree and they hit it off right away. Another hopeful sign Zak may perform well at AISJ is an elaborate, globally recognized, aptitude test, in which he scores above average in most subject areas. So we know the ability is there. Now we just have to ingrain good study and homework habits.
Everything looks great, until it doesn’t.
The second term “Town” project incorporates curriculum for math, English, humanities and art, where some elements are “group” and some solo. Zak keeps updating me on what he is doing and it all sounds so sorted. I assume it is, right up until the night before the deadline, when I find out it isn’t.
It is all in his head.
WTF IS WRONG WITH MY KID??!!!
I pull my first all-nighter in a decade, sitting at my desktop, with Zak behind me, dictating his essay, directing the design of his website and logo, and putting together his business and marketing plan, complete with a five-year projection. He doesn’t quite finish everything on the project’s to-do list, even with me as his scribe, but he does enough to get a good grade. I immediately see he (or we) have really big challenges to face in the planning, organizing and execution departments.
Zak starts the term a bit late but has Resource to help him catch up. Des hits the ground running to do his best for Zac:
From: Des Maree
Sent: Thursday, August 30, 2012 10:59
To: Edwidge S; Janice J; Peter D; Kurt D
Subject: Zak Malins-Bush
I am working with Zak and would appreciate any feedback as to how he is settling in your class. He is not writing down his homework, except for Science.
Zak’s trajectory goes from “promising” to “challenging” to “problematic” to “we are at the limit of our capacity to serve Zak”: all within one academic year.
He’s not happy with the move to South Africa either, which doesn’t help with settling into a new school. Socially, he’s disengaged, despite my best efforts with friends I make for him with kids his own age.
WTF IS WRONG WITH MY KID??!!!
I can’t get him interested in trying out for a team, or even joining a club. He’d rather sit alone during his spares and sink his head into his iPad. By the end of that term, the school is insisting he has a psycho-educational assessment. Things are obviously not going as well as I’d hoped, on any front.
Off Zak and I go to the Gantry Assessment Centre in Pineslopes, Johannesburg. Zak spends several hours with a psychometrist by the name of Grant Allen and emerges looking stoned, but fine.
Using the Wechsler Intelligence Scale for Children (WISC-IV), his IQ results are as follows: high-average verbal comprehension; mid-average perceptual reasoning; high-average working memory. He’s not a genius, but why would he be with me and his dad in his gene pool?
There are no apparent clues to explain his struggles at school either. Oh, except that his writing is slow and strained and messy. It’s recommended he is allowed to type tests and exams, which the school accommodates.
Complimenting the IQ report is an Achievement Motivation Profile, where I begin to see why the school will respectfully absolve themselves of responsibility for Zak’s academic lack of achievement six months later:
“Such students are often prone to perform below their potential. It is common for such students to appear tense, worried and concerned about meeting the expectations of others. Their motivation or inner drive may be low. They may not have clear goals and objectives. They usually do not make use of efficient planning and organizing skills or related work habits.”
The school expects Zak has ADHD, but the official assessment says otherwise. So we’re back to psychological explanations.
I decide Zak should talk to a therapist about his anger toward me and the man I married three years previously. Zac hates Colin, and Colin shows Zac no love loss in return. Zac reluctantly agrees to see a therapist under the proviso that every session must immediately be followed by a restaurant trip of his choice. Deal.
Hate is a strong word. And an appropriate one here. There is no love lost between my husband and my son. Even though I seem to be constantly remind one of them who the adult in the room is (me), Colin barely bothers trying to relate to Zak about anything. In fact, he pushes me to look into boarding school options, again and again, claiming it’s because he thinks it will “build character.”
Colin went to a boarding school.
Colin’s boarding school stories are traumatizing.
Zak is never going to a boarding school.
With boarding school off the table, Colin pushes for Zak to live in London with his dad, Steve, where Colin insists he will be happier. I actually entertain this idea. Anything at this point to make Zak happy and “motivated”. But his dad’s new wife won’t have it. Zak is not moving to live with Steve in London. Colin just wants Zak to go away. But Colin is in Angola for work most of the time. Zak is staying with me and getting the help he needs. Hopefully.
A psychiatrist recommended by Zak’s first therapist prescribes an antidepressant, which he takes for a few months, but it does absolutely nothing. And given some of current reports linking SSRIs with teen suicide, I’m not sad to see the drugs go. But the lack of pharmaceuticals just leaves us right back where we started, worse even. Zak is getting sick a lot, missing a lot of days at school and his performance is plummeting.
WTF IS WRONG WITH MY KID??!!!
We try a second therapist, a younger one. Zak might be able to relate to him better. He’s nice enough and Zak likes him but aside from seeming somewhat less angry toward me, there’s no real change. Maybe I’m too impatient, but I’m desperate for results, which just aren’t coming.
By late March, I’m at breaking point. My beautiful, formerly bright and enthusiastic boy appears defeated and deflated. Following the psychoeducational evaluation, he’s allowed to use computers to write tests and exams. And he has the same academic coaching and assistance from the Learning Support Centre he’s had all year. We’ve got two months to turn his year around, and no sign of how that’s going to happen.
I feel like we’re missing something. This isn’t just about anger, and bad attitudes, and a bit of messy writing. I’m convinced there’s more to it. So. I do what I always do when faced with a medical mystery: research research research.
I was first to “diagnose” a girlfriend’s tubular pregnancy after doctors failed to find anything wrong with her. I was also first to “diagnose” my mother’s hydrocephalus. Doctors kept suggesting my mom was showing signs of dementia, but I knew her brain was fine. There were no memory issues evident at all to anyone who bothered to sit and chat with her. She was dizzy, disoriented, and walked like Charlie Chaplin. These, plus a few other unmentionable symptoms, were very distressing.
I start googling madly. Upon finding a fit in a diagnosis of “water on the brain” – a condition more commonly associated with newborns – I found a specialist surgeon in the University College Hospital Network who could check and, if correct, do something about it. I got his go ahead to ask my mom’s GP to send him a referral. Two months, an MRI, an operation and one shunt later, my mother was good as new.
Now, it’s Zak’s turn. And it doesn’t take a whole lot of mad googling to get to my eureka moment. Even if it falls heavy on my heart and immediately makes me feel I have failed my child.
My son gets a diagnosis of a permanent disability at age 15 purely because I stumble across a checklist of symptoms put together by some underfunded, non-profit organization in the UK that’s doing their best to help me. Why didn’t I madly google earlier? How long has this information even been online?
It quickly leads me to a whole new set of questions:
Why have I never heard of this condition?
Why aren’t GPs trained to test for this?
Why aren’t schools screening for it, like they do for hearing and dyslexia?
Why aren’t there any celebrities jumping on a bandwagon?
I. Am. Incensed.
At the world. At myself. One in 10 people are likely walking around with a disability without even knowing it. That’s 1 in 10 kids starting life full of beans and enthusiasm before their parents slowly watch them lose all motivation and self-esteem, completely at a loss to understand how this could happen to their happy chappy.
This is April, 2013. There is some limited information available, if you know what to look for. And there is barely any more awareness now, six years later. Type the symptoms into WedMD’s Symptom Checker and you get nothing.
Guilt mounts with each line I read from the Dyspraxia Foundation:
“The Dyspraxia Foundation is a country wide charity, founded in 1987 as the Dyspraxia Trust by two mothers. After being told that their children had Dyspraxia they were astonished and dismayed to discover that no facilities existed to help or inform parents and children with the condition.”
“Symptoms are evident from an early age. Babies are usually irritable from birth and may exhibit significant feeding problems. They are slow to achieve expected developmental milestones. For example, by the age of eight months they still may not sit independently.”
“Many children with dyspraxia fail to go through the crawling stages, preferring to ‘bottom shuffle’ and then walk. They usually avoid tasks which require good manual dexterity. If dyspraxia is not identified by age 5, problems can persist and affect the child’s life at school. Increasing frustration and lowering of self-esteem can result.”
“By age 9, children with dyspraxia may have become disaffected with the education system. Handwriting is often a particular difficulty. By the time they reach secondary education their attendance record is often poor.”
I’m swimming in a sea of symptoms. Guilt-ridden memories wash over me. If only I’d known because, of course, the most effective interventions are always the early ones.
It never made sense to me why his first Toronto daycare, from ages three to five adored him, but then he got expelled from Kindergarten. At the time, I blamed the suburban, ultra white teacher satellited in from Oakville for expecting more from the only other blonde haired, blue eyed person in this inner city classroom. Instead, he took a long time to tie his shoes. He still avoids laces where possible and if he can’t, he still doesn’t loop one lace under the other but rather starts with two bunny ears.
I figured Zak had his father’s less adventurous, less sporty, slightly clumsy genes. He was the opposite of the fearless nutcase I was as a child. And the more I pushed him to try new things, the more he objected.
There is always enough positive to balance any negative and to leave me feeling everything is fine and that we all have our strengths and weaknesses. Everyone is different and that we celebrate difference, right? So what if Zak loves football (soccer) but can’t bend the ball like Beckham? So what if he needs remedial reading in Grade One? Languages aren’t everyone’s forté. There never seems to be anything seriously wrong with him, until there does.
Zak and I drive the 50 minutes it takes to go 17 kilometers in Johannesburg traffic to the closest clinic equipped to test for dyspraxia. My diagnosis is confirmed by the Addnova Center’s official one. They also determine he wakes up with a stress-load that’s about forty percent higher than the average Jay, Jonah or Jade. His anxiety level are always on high. No wonder he looks so stoned all the time.
Finally. An explanation, some prescribed occupational therapy, and re-focussed counselling.
Zak looks normal. Maybe just little tired, and probably stoned. But I know for a fact he’s not. He has a disability. It’s called dyspraxia. In 2013, the Dyspraxia Foundation estimated it affected up to ten percent of the population, with two percent having severe and debilitating symptoms like Zak’s. That’s still a huge number. It might even explain WTF’s wrong with your own kid. That, or dyscalculia, or dysgraphia, or some sensory processing disorder, or a whole host of other conditions you might be reading about here for the first time.
Trish Bush is a writer, filmmaker and TV producer. Originally from Toronto, she now lives in London. She is making a documentary film about her experiences as a single mom to a teenager with dyspraxia.