Fearing the Future

Speaking for myself as a parent of a teen with OCD, I think that the worst thing is the fear of what lies in store for him.

I imagine a string of failed relationships and lost jobs, and at best a lonely old age. 

When I realised the severity of John’s OCD I desperately researched the condition. Hours of trawling the web and thumbing through OCD charity magazines did nothing to abate my fears.  I read inspirational and heart rending stories of noble and broken parents swimming, walking or climbing to raise money in memory of their child lost to OCD. I encountered more and more horror stories of suicide, drug addiction and alcoholism/liver damage cutting short the lives of young adults as they struggled and failed to survive their OCD. I cannot describe the hollow feeling as the realization hit me that if we did not find help and fast,the prognosis could be fatal.

This is why I am passionate about seeing a change in the speed in which youngsters are treated, the quality of their care and the way in which the education system treats them.

I am hopeful for John now as he begins his ERP therapy, but I will never forget that feeling and am very aware that other parents out there are also fearing and fighting for the future. 

Educate the Educators

Our experience of endeavouring to give the school system
a basic understanding of OCD has been very frustrating.
Johns last year at school caused him such anxiety that
panic attacks on days when he had tutors who were 
particularly obtuse to his situation meant that his 
attendance fell considerably.

Teachers noticed something was wrong when the quiet,
helpful boy became argumentative and difficult.
One teacher told me she could hardly believe it
was the same boy. At first I did not realise this
was connected to John's OCD, which he tried to
conceal and I thought consisted of just a few odd
habits at that time. His grades began to slip.

When it became obvious that his condition had worsened 
the penny dropped.He was arguing with teachers because
he could not tell them why he did not want to move seat,
why he could not pick up his pen, why he kept looking
over his shoulder, why he refused to remove his jacket.
He was frequently late due to lack of sleep and lengthy 
rituals. A dislike of pencil cases for hygiene reasons
meant that he often lacked the necessary equipment and
vast amounts of time were spent in detention or internal
exclusion.
The injustice made him angry.

For My first meeting with his head of year I armed 
myself with a short printout from the OCD
international web site which briefly explained the
condition. I included some links in case further
information was needed and I typed out a short
summery of how Johns particular compulsions might
affect school life. Sympathetic noises were made
and I was assured that a memo would be circulated
among staff and the required allowances made.
I was also assured complete confidentiality
in respect to his peers.

Three days later John was put in internal exclusion
for being low level disruptive. In class he had asked to
leave the room to wash his hands. The teacher refused his 
request and told him to get on with his work. John became
agitated. He could not pick up his pen until he had washed
his hand. He argued his point, unable to mention OCD in 
front of his classmates and the teacher shouted at him to
do his work.The situation escalated and he was punished. 

This time I met with the deputy head. Was the memo not
circulated or were staff ignoring it? I furnished him
with all the information given to his colleague and
waited for the explanation. 
"If john could not pick up his pen in that lesson, how
was he able to use the computer in the next one?"
I could have cried. I was wasting my breath. 
I appreciate it is a difficult condition to understand
as it is different for everyone, but the tone was that he
suspected that John was a liar. 

A catalogue of disasters followed. Johns coat was confiscated
causing him so much distress he had to be sent home. 
He was sent to the office for a pen, was challenged about why
he was not in class and ended up surrounded by five staff 
members shouting at him in a corridor with a girlfriend
looking on. He asked to speak with a staff member who knew
about his condition and was refused permission. Again he 
became so distressed he had to be sent home. 

The icing on the cake came when a teacher burst into his
class and announced loudly to another tutor that John
had asked her not to lose her temper with him as he had OCD!
Now his classmates knew. So much for confidentiality! 

In conclusion, despite numerous meetings with teachers ,
lack of understanding and an unwillingness to take the 
condition seriously prevailed. They tried to make
politically correct noises but remained largely unhelpful.
I can't help thinking that had John's disability been 
visual he would have been presented with all kinds of aids
to help him. As it is he had to struggle alone against
 the tide.

It is too late for him now. His school days are behind him,
but if schools could be educated to understand the disorder,
life might be easier for the next child with OCD that
passes through their gates. 

Post script;
I just read this list designed to help teachers to
recognize when a child has OCD. I cried. It is
describing John precisely.
http://school.ocdaction.org.uk/teachers/
No one believed him.
No one helped him.
I can't help but wonder if his disability had been
of a visual nature, if staff would have dared
to ignore it.

John’s dark days

Educate the Educators

UK mental health awareness. Keep the ball rolling

Charles Walker MP gave a brave and moving speech in the commons last month about his struggle with OCD. As he is chairman of the all party mental health group I am hopeful that his intent is to champion the cause. At least this might make the whole thing a bit more topical and raise awareness. In an ideal world perhaps more money could be thrown at CAMHS so that children like John are not cast adrift.

I will never forget that walk back from the doctor’s surgery with him. I was in shock after what I had just heard. John had hidden the extent of his problems for years and although he was quiet I could sense his relief. Despite this humiliation, it was out in the open.

“At least I’ll get some help now”, was his consolation. He was looking for justification. Reassurance he had done the right thing. I gave it.

Eight months on I felt like a liar because the help I promised still hadn’t come. Despite endless letters to the health authority from ourselves and the school, the early intervention we were promised in time for his GCSEs never came. We wrote to our MP and tried to fight his corner.

This morning John had his first assessment with CAMHS and we are hopeful for the future. His ERP therapy will start soon and the battle is over.

With the momentum of Mr. Walker’s speech and that of Kevan Jones MP re. mental health, in conjunction with Channel 4’s recent ‘4 goes mad’ season, I think we should do what we can to keep the ball rolling and raise public awareness so that pressure is put on the government to inject more resources into mental health.Children like John feeling desperate and alone should not have to wait eight months to be seen.

Historically people with mental health issues don’t make a fuss.

Let’s change that!

Not what defines him.

He is a loving son and a reasonable cook.

He is a excellent shot and a good strategist.

He is a thoughtful boyfriend and a true friend.

He is a team player yet has strong opinions.

He is good at construction and design.

He loves interesting music, even if it is old.

He doesn’t read much.

He  likes a good film. He is  the class clown.

He is kind to animals and interested in natural history.

He is  above average intelligence and enjoys keeping fit.

His life is laid out before him and the opportunities are endless.

OCD is not what defines him.

Look again.

There is more to him than that.

On a good day…

On a good day the way he moves is a natural to him as
 breathing in and out. The quarter turn of the bottle 
between each splash of juice poured. The one, two,
 three, four bangs of the fridge door without breaking
 his stride in the story he is telling me .But I don't hear
 him. All I can think about is what he is doing. 
He places the plate in the microwave, one, two, three,
 four times closing the door. He turns on his axis ,full 
circle before putting his plate on the counter. 
Without losing eye contact with me he continues the
 conversation ,whilst sliding the plate along the surface
 and off the edge, not breaking contact until the last moment.

But today is a good day. At least he is chatty and in reasonable
 spirits. At least he's eating!  I am always grateful for days like
 these.

As he adjusts himself on the dining chair until it feels just right.
 I ask him how his day at school was. 
"Alright".
" Tell me what you did today ." I press.
The beginnings of some agitation now. I've pushed too far. 
"You know I can't" . He looks at his burger and I can sense
 the inward squirm. 
" I just don't get why you can't talk to me about what you've 
been doing"

Pause.

" It's an OCD thing mum". 

I leave it at that and quickly switch to small talk about some
 TV programme so as not to turn around his good day.
 He doesn't want to talk about it. He wants to be like other
 teenagers and forget his torments. This is as near
 to forgetting as he gets. So we talk and laugh for a little
 while about past holidays, the dog, Rhod Gilbert and other
 things of no consequence. For now he seems happy and
 that's enough for both of us.

I wonder to myself when it was that a pleasant, relaxed 
conversation with my only son became something to be
 elated about. I feel almost giddy.  I suppose most families
 take this kind of thing for granted. I know I did when my girls 
were young. Recently it seems that life has taught me to
 appreciate the little things, or rather to realise that what
 I used to view as a little thing is actually a huge blessing.

John’s Story

Our perfect baby boy was born in June when the sun was shining. My third child, unexpected and precious. I often wonder now just when the demon of OCD began whispering to him, but in these days we were happy and unaware that this silent disease was waiting in the wings.

John was a loving child. Over sensitive perhaps, but bright with a love of nature and an eagerness to learn. School parents evenings in those days were filled with praise for this quiet boy, polite and helpful. He had a few close friends but was often bullied by the rabble.

It was one morning whilst leaving for school when I first noticed that John did exactly the same thing each day before leaving the house. A discreet sequence of touching and checking, carefully disguised but unmistakeable once noticed. He was seven years old.

A few days passed before I approached the subject. I tried to sound casual.

I’ve noticed that you always do the same thing every morning when we go out of the door. Why is that?”

His eyes showed shock that I had noticed, then he lowered them and shrugged.

It’s OK,” I continued, “ Lots of people have little habits like that. When I was young I used to always touch light switches in a certain way, the one day I realised that I should try to stop this, and I did. Maybe, if you can, you should try to stop too.”

This was true, but I had no idea that he would not just grow out of this habit, that maybe it was something more sinister.

That night I spoke to my husband and mentioned that I thought our son might have OCD. I had heard the term loosely used and had a vague idea about habits and obsessions. He told me not to worry and hinted that I had imagined it. No one else in the family had noticed anything. I put the thought to the back of my mind – and John became even better at hiding what was going on.

When John was around eight he asked me if I could get him some sleeping tablets. I’m ashamed to say, I laughed. Soon afterwards he developed a frequent throat clearing noise that I took to be some kind of cough. I took him to the doctor who said there was nothing wrong. This passed after a few months, although it occasionally recurs briefly. Looking back I suspect the possibility of a touch of tourettes and delayed sleep phase syndrome – both closely linked to OCD.

Years passed as though everything was normal. In his adolescent years John was perpetually late for everything. School, appointments – and trying to catch a flight was a nightmare! We would have to pretend it was much earlier than it actually was to be in with a chance. Getting him to get ready and then actually go through the door whilst he hovered and checked was an infuriating task. Endless punishments and arguments followed but nothing could change his behaviour. The challenge of the teenage years, we thought. I occasionally noticed some minor touching rituals and strange eye movements, but didn’t really make a connection or see it as a huge problem. It was just John’s little habits and we all accepted it as being normal for him.

One night when he was fourteen John confided in me. “I think my OCD is getting worse. My friends are starting to notice.” I asked if he thought he should see a doctor. He was undecided so I googled OCD and find out what treatments were available. We were shocked to find it was classed as a mental health issue and decided that he did not want this kind of a stigma on his medical records. He would try to overcome it himself.

At fifteen we began to encounter some problems at school. John was becoming argumentative with some of the teachers and we were called in to discuss it. The head of year said she could not understand this sudden change of character. We had never had this kind of problem with our daughters. Perhaps it was a teenage boy testosterone thing? It seemed worse when he was under stress.

A few months later came the turning point. I was awakened in the night by my son, distraught. He could not enter his bedroom! I was shocked and alarmed. I had no idea how bad this had become. I thought we were talking about a few little habits. It was time to seek help.

In the doctor’s waiting room I thought back to all the little things over the years that must have been down to OCD. The perpetual cough (that was more like throat clearing) I had taken him to the doctor for. The spitting from the age of three every time he saw a spider or something that seemed dirty. How long had he been living this nightmare? How had I not realised and got him help years ago?

He asked if he could go into the surgery alone. I explained that on other visits he could, but this first time I wanted to be there to be sure he was offered some help.

The doctor listened to what I had to say, then turned to John. “How does this affect you?” he asked. As I listened to John speak I was struck dumb. He quietly spoke of how he was often unable to sleep, frequently unable to eat and my head began to spin. The uneaten dinners and unused dinner money, the endless mornings when I shouted at him because he wouldn’t wake up, it all began to slot into place. What kind of a mother am I that I didn’t notice? This is why he didn’t want me to go in with him. He had become an expert at hiding these thoughts he was ashamed of, the behaviour that prevented him from being ‘normal’.

I quickly learned what I could about OCD and found it is listed by the World Health Organisation in the top ten of most debilitating illnesses. John began to open up to me about the manifestations of his condition which are complex and heartbreaking, but I know there are things he still cannot tell me. He wants to be seen as ‘normal’, and he knows these compulsions and rituals are irrational.

Now eight months on we are awaiting help from the Child and Adolescent Mental Health Service. GCSEs are upon us and things are getting worse but we are hopeful that one day he will begin to receive the help he needs and start the journey to some kind of recovery. We have struggled to make his school understand and hope that now after several meetings they will stop punishing him for not being able to concentrate or becoming stressed due to his condition. We are encouraged that some small allowances may now be made for him, e.g. allowing him to wash his hands when he feels the need and getting a time out pass to leave the class when stressed, but in truth they do not grasp his condition and whilst I wish this were different, I understand why.

The charity OCD-UK have given us precious help and advice in a world that has little understanding or sympathy for this very real illness which is so often forced underground by stigma. Resources are scarce and understanding is thin on the ground. (Further help can be found at OCD Action, which I was unaware of at first.)

We feel alone in a world that thinks he should snap out of it, or that everyone is a ‘bit like that’ because they like their books straight. In the nine months since we visited the GP John’s condition has deteriorated and he is desperate to see someone. I am fearful for how long he can cope like this.

On a good day it is great to have laugh with John and see him, whilst still habitual, relatively relaxed. He is an expert at hiding it on days like these. On a bad day, frozen on the landing outside his room, clearly distressed, it is heartbreaking. All we can do is pretend we haven’t noticed and pray for it to pass, unable to help. Drawing attention to it seems to make him worse, just like interrupting a ritual makes him start all over again.

Further into the future we hope for great things for John. For a stable job and relationship, andImage that when treatment comes for him, it may help him to control and ignore the voice of this whispering demon he feels compelled to obey.

I suspect that People living with OCD ,as well as their
loved ones, feel like they are the only ones going 
through this. I know this to be true for me. Logic 
tells me that other people must have OCD, but I have
never knowingly met any of them.

I suspect this is largely due to the stigma attached to
this 'mental illness'. It is not the kind of thing one 
brags about. I cannot discuss my worries or problems 
with anyone else who might remotely understand.
How much more poignant must this be for John? How alone 
must he feel? If no one understands the worries and
everyday practical problems of the parent of a child
with OCD, how much less does anyone know about what it 
is like to be that child?

Since I realised that OCD was a part of our family I 
have researched it carefully . Know thine enemy! But
 even now I acknowledge that I have no idea what is 
going on in Johns head most of the time. I don't know
why he has his compulsions, I don't always know what 
he is doing and I don't know why or when they will 
change and evolve. He does not like to discuss it with
the family and rarely gives us an insight into his
world. He tells me that it is with him all the time
and the last thing he wants to do is talk about it 
as he is trying to escape it. I cannot truly comprehend
what it is like to be him .I try to learn a little more 
each day but I can only imagine his torment.

Another factor that isolates the OCD sufferer is its
uniqueness. No two sets of symptoms are exactly the 
same. One person might have obsession with cleanliness, 
another might be an untidy person obsessed with symetry.
One might constantly check doors are locked, another
be condemned to complete meaningless and complex 
mental rituals, unseen by the observer. (And pure O 
is even more complex!)
The family might not recognise what they have as OCD
because it does not fit the stereotype of what society
perceives it to be. How can he have OCD when his 
bookshelf is a mess?

Alone together with OCD