My perfect son.

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In John’s early teens when he and I  suspected OCD and the rest of the world were either oblivious or in denial, John tried to combat the condition himself (without the stigma of having a label slapped on him by the medical profession)

For my part I hoped that if we ignored it, it would go away. Perhaps he would grow out of it? I wondered if acknowledging it’s existence might somehow justify the rituals and discourage John from trying to suppress them. I wonder still if time alone with OCD allows the sufferer to indulge what should be resisted. We were both naive, however, and underestimated the OCD grip!

The rituals and compulsions multiplied and became more severe with time. The realisation that this was not going to go away hung like a black cloud.

Now, years on in the midst of the battle I am still regularly fooled into thinking that all is well. Each time John has a few ‘good’ days (not to say that he is ever OCD free, but sometimes in good spirits, functioning well, sleeping, eating with only moderate compulsions), I am euphoric and find myself acting as if he is well. Perhaps he is cured? Perhaps it was all a dream and he never had it at all?!      I fall for it every time!

When the meltdown comes it devastates me anew.

I relive the heartbreaking realisation that my son is not perfect. That life will probably always be hard for him, but you know what?….

…….I am proud of him, at 16 he is already his own man despite his difficulties, he is perfect !

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

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.