A Little bit OCD – a poem

"A little bit OCD"

When I knew my boy was haunted by
this demon in his ear
Not knowing how to help him,
My knowledge turned to fear.

I'll keep this to myself I thought,
He didn't want to be
the boy that was a weirdo,
Just 'That kid with OCD .'

But people came to notice
little signs that served to tell.
They all became an expert
"I've got OCD as well!"

"I always put my books in line
so neatly on the shelf.
My husband says that I'm 
a little bit OCD myself!"

"Take away his Xbox
if he keeps on being late.
Ground him for a week and he'll soon
Realise his mistake."

"Tell him to snap out of it.
You have to make him see.
Nip it in the bud,
we're all a wee bit OCD."

My boy can not eat or sleep
or concentrate at school.
A little bit OCD maybe
But at least he's not a fool!

Jane Drew

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Understanding OCD

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The horror of discovering that my boy had OCD made me frantic to understand it. Know thine enemy.

As time has passed I have had to come to terms with the knowledge that I never really will. It is a changing beast that is not only individual to the person, but it morphs and evolves.

We have to try to understand up to a point. Then we reach the edge of the cliff looking out into a darkness through which we cannot pass, and we know our child is out there alone.

http://www.ocduk.org/understanding-ocd-video

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

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.

Jon Richardson ‘A Little bit OCD’

Jon Richardson ‘A little bit OCD’

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Comedian Jon Richardson with my son John filming for Channel 4.  ‘A Little bit OCD’  which aired July 2012.

The program aimed to discover if Jon has the disorder. He visited several sufferers, including John in the hope that he and viewers learn more about what it is to have OCD.

John took part, despite misgivings, in the hope that it would help to raise awareness, which we hope it did. It’s first airing netted an unexpectedly high 1.6 million viewers. Both John and the subject were treated with sensitivity by the production company and Jon Richardson, who spoke to him by phone after the show.

I think that John was very brave to do this, as he has hidden the condition for years. He is my hero.

This event and the feedback it created from other sufferers and their families inspired this blog to share my experiences of having a child with OCD. The idea came from thediaryofthegirlinthehat who reviewed the show on her blog. Thanks to her for that.

My hope is that this blog will be therapy for me and helpful to others in the same position.

September 2013. We just heard from the production company that the documentary has been nominated for an award from Mind.

Jon Richardson talks to John

Jon talks about John’s OCD