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 !

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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

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