‘Parenting OCD. Down to Earth Advice from One Parent to Another.’ Claire Sanders.


A book review for inourhands.com

How do you ‘Parent OCD’? Surely that concept is counter – intuitive? Or so I thought until I read Claire Sanders poignant account of how she parented a son with severe Obsessive Compulsive Disorder (OCD).

OCD is like a toddler, attention seeking, prone to tantrums and frequently illogical:

“Don’t let OCD get too comfy, or… it’ll scream and scream for more, because you’ve shown it that you will give in.”

It is also dominant and controlling:

“In your child’s head lives a bully. It puts horrible thoughts in their heads, horrible images, and makes them do things they don’t really want to do.”

If your child has OCD, you really do need some ‘Down to Earth’ advice on how to cope. Claire’s book is more than practical, it is from the heart and from the perspective of a mother who has had to accept that her son’s, “OCD is stronger than her bond”, with him. We also learn that she would, “have to fight like a tiger to get him back.”

No one is given a parenting manual when we have a child, fortunately Claire has written a book that will guide you, not just through the warning signs of OCD and how to get a diagnosis, but also through the types of therapy and medication that are available. She will advise you on how to approach your child’s education and what to do to ensure that your family life is not compromised by the condition. In an unflinchingly honest way, she will also explain how it feels when the initial treatments don’t work, what OCD can twist and mutate into and how it can cause explosive panic attacks and outbursts; not just in the sufferer, but family members as well. Claire is always there to hold your hand and like any good friend, she tells you the absolute truth about, ‘Parenting OCD.’

What I also like about Claire’s book is her use of humour, often self deprecating, frequently mischievous and clearly a survival mechanism that has worked for her. For example when faced with feelings of trepidation about their visit to the OCD unit at the Maudsley hospital, she writes:

“Nerves and embarrassment had turned me into my headmistress.”

During that same visit she also noted that:

“The people at the Maudsley know Jedi mind tricks. It gets me through the day.”

Not just parents will benefit from the advice set out in ‘Parenting OCD’. If you are a teacher, health care professional or just an interested spectator, then you too will gain invaluable knowledge of this brutal condition from a first hand perspective. I wanted to review this book because I have OCD and the book has echoed my own thoughts:

“OCD rips your heart out, doesn’t it?”

Looking after a child with OCD is at its best difficult and at its worst destructive. It can affect your marriage, friendships and family life, but still Claire shows empathy and understanding for her son’s phlight:

“It never fails to amaze me that OCD sufferers are able to do as much as they do, given what they are putting up with. I couldn’t do it.”

To echo her own words at the end of the book: Claire you are strong, you keep laughing and you are doing a great job.

Read her book folks, it might just teach you a Jedi mind trick or two.

Reviewed by:

@caughtinaloop caught-in-an-ocd-loop.com

Jessica Kingsley Publishers

73 Collier Street

London

N1 9BE

ISBN 978-1-84905-478-2

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Birth and OCD


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Today I sideways hugged my son’s godmother, we weren’t trying a new way of being affectionate, she is 9 months pregnant and I have put on weight. Again. We hugged sideways because we could not actually hug forwards, as our stomachs were protruding too much and our arms would not reach around each others’ middles!

However, after the hug I felt very emotional. Today is her due date and soon enough she will have a new life to love, nurture and protect. As much as I was overjoyed for her, I felt my eyes well up thinking that cancer and OCD had robbed me of the chance to have a second child.

I am not surprised that OCD took a grip on my life around pregnancy. I had a polyhydramnios birth- too much amniotic fluid in the womb. Living with this knowledge in the weeks leading up to an emergency c-section, utterly terrified me. I was told that I had to stay in hospital pre delivery for a few weeks and that I had to be closely monitored. If I gave birth too quickly, then the cord would wrap itself around my baby’s neck and cause suffocation. When my waters broke I was also advised what to do. I would need to crouch down on all fours immediately, no matter where I was, to prevent foetal asphyxiation. I imagined all the worst places to give birth on a regular basis and planned what to do in each scenario, down to the last detail. I was mortified, I was frightened and I above all I wanted my baby to be safe. Any mother would have felt the same, the difference being the severity and repetition of my thoughts.

All mothers have fears. But a mother with OCD has terrors. I constantly imagined my child dying over and over again. At 20 weeks I knew that he was a boy and had even named him. I read to him even in the womb, and our bond was as strong at 9 months as it is today, but I could not enjoy those final weeks because I was scared to death of losing him and/or dying myself. These were OCD thoughts. Vivid. Disturbing. But not real. Not totally anyway. They were based on a real scenario, but fear had exaggerated their dominance in my mind.

So yes I am overjoyed that soon I will have a little baby to hold, a tiny sweet smelling cheek to kiss and a warm hand to touch. It’s just that birth brings back memories for me that I wish were not so sad.

OCD: A life in my head


I live in my head. On a good day it is a place of fantastical imaginings, technicolour landscapes and positive affirmations. Conversely, when stuck in an OCD loop my synapses morph into a twisted tangle of sinister branches and charred tree stubs; I become lost in my own mind. The only way to avoid permanent loss of lucidity is to find calm through nature.

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An OCD mind is never quiet for very long, to still it you must be totally immersed in an activity or awed by something greater than you; I need to feel just how small I am in the greater scheme of things. When by the coast or in a wooded copse, it seems that the convoluted neural networks in my brain send out more positive transmissions; there is a definite sharpness in my thinking.

I need more moments in nature. More time to think about the immensity of life and not the the topics that cause me intense anxiety. Back in town, dementors are circling as I write. Intrusive thoughts are ruining my concentration and I can’t focus on what I wanted to convey to you any more.

Camera shots momentarily restore the fluidity of thought. Time to sleep.

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My first OCD scars.


 I have a lot of scars on my body.

The first scar I gained was as a result of an operation on my eye. My eyelid drooped and had to be reduced in size, I was scared and needed my parents to stay with me, but this was the 70s and they were not allowed to comfort me overnight in the hospital. I was left alone in an austere Victorian building; it was cold, gloomy and sterile. I can recall every minute detail of my hospitalisation: it was was terrifying. A nurse actually told me that if I did not stop crying, then she would personally ensure that a sharp needle was stuck into me. What a cruel thing to say to a four year old. It also created an intense fear of being alone. I had nightmares about that hospital for years afterwards and it makes me wonder if this incident, not the dead bird, was the origin of my OCD. After all, from that point on, I knew what fear looked like and my scar was a daily reminder of it.

Conversely, my favourite scar is a triangular, white scar on my arm. It has been there since I was a little girl in junior school. I got it one hot summer’s evening, maybe in 1977, when I was on my way back from a swimming lesson. On that particular evening, I was feeling rather giddy and ran helter skelter down a grassy slope, landing on a freshly laid floor of rancid tar. The bitter smelling substance lodged itself in my arm and I screamed like a banshee.

Being a nurse, my mum felt qualified to deal with the situation at hand and rushed me home to bathe my wounds. She carefully removed each grain of granular tar from my arm, with a pair of sterilised tweezers; I nearly fainted with the pain. However, regardless of its birth, I like my scar. It never tans in the sun and is a vivid reminder of its associated pain. I like that scar along with my chickenpox mark next to my nose.

The chicken pox crater next to my nose can still be felt with my finger. I can also remember the time that I had off from school because of this illness. My mum made a rag doll with me and it was a wonderful experience, as I had my mum all to myself and she really concentrated on what I had to say. You see my mum also has OCD and she too gets distracted in conversations, because she is thinking about her own intrusive thoughts. As a child, I thought that she was not interested in what I had to say, as she often glazed over; looking bored. But now I know that she was battling her own OCD demons, thinking about contamination and illness; trying to keep her own parents alive with sheer determination and Dettol.

Scars tell stories and there are more scars on my body to describe to you. But not now. Not tonight.

Charles Xavier and OCD


Charles Xavier, from the X Men, is a telepath. He can read minds and influence thoughts. He is considered to be a genius.

However, I had to stop blogging recently because I had a Charles Xavier moment.

It always struck me about Xavier’s talent that it also must be a curse. To be able to read minds is phenomenal, but what if those thoughts are damaged and full of despair? What would that sound like? How would one cope with that depth of feeling?

Then it happened to me and I could not cope.

A few days ago I began to read blogs about OCD and whilst they were beautifully written and at times extremely powerful, I felt as though I was connected to those thoughts and it overwhelmed me.

On Twitter and WordPress I have found hundreds of people with OCD who are trying to explain their mental health journeys. I felt humbled. So many people afflicted by a condition not of their making. So many people lost in thought and fear. So many lives on hold whilst they try to combat their OCD.

So now when I think about the OCD community, I see Charles Xavier and his computer Cerebro. If only there was an equivalent to identify this destructive condition before it mutates and wrecks so many lives.

Popcorn and OCD 


I was making popcorn this morning and it struck me just how similar that process was to OCD.

Prior to diagnosis, most of my strange OCD thoughts were encased in a small tight kernel; impenetrable and hard to reach by those around me. Deliberately so, as I thought my ruminating made me peculiar and strange.

Heat was applied, in the form of a cancer diagnosis, and the kernel was no longer as hard as it once was; fissures began to show. Those closest to me began to notice a change, a pre occupation, a fear that made me withdraw from them. In retrospect my OCD thoughts were once again dominating my thinking and I was lost in them, so lost that I was not even aware of my own child at times. The last time that this had happened was pre and post pregnancy; the very time when I should have been popping with excitement and joy.

As the fissures grew, other OCD worries abounded and my head was so overcrowded with fears that they began to swell and distort inside my skull. They eventually ruptured the outer layer of kernel and exploded in a violent tumult, that damaged those around me in my panic. OCD panic is loud, chaotic and out of control. To others it may seem like belligerence, but it is terror, pure unholy terror.

Here the similarities between OCD and popcorn end. OCD is acicular. It is damaging and it hurts. Its needle like points penetrate everything; including love, especially love. If I could wear my OCD like a tattoo it would look like a maelstrom.

Tattoos and OCD


Recently I finished reading the novel ‘In the Skin of a Lion’, by Michael Ondaajte. His prose made me want to absorb the OCD fears that I hear in my head and wear them on my skin, for all to see.

Sometimes I feel that having OCD is like having a tattoo. Frequently the tattoo must be hidden from the world, because it offends the cultural norms of society.

However, you can choose to have a tattoo; to rebel. But I did not choose to have OCD. It chose me.


The descent of words

I hang on to your lines like I would a suspension wire.
Your pronouns and verbs
are the only things
preventing me from plummeting to the
ground.
My hands are scarred from holding on so tightly
rubbed raw with friction-
Or should I say fiction?
This story is just that.
A flimsy cling filmed existence,
Translucent. Serrated. Stretched.
I read us into the myriad of myths that absorb me.
‘Hey Patrick!’
‘Everyone has to scratch on walls somewhere.’
But My nails break on the bricks as I slide down them in free fall from the wire.
I pass your window during my descent but
You lock the latch and retreat behind the glass.
Not noticing or
choosing not to notice
my flailing arms.
The ground is approaching fast.
My words tumble and contort as they try to find their way back up to you.

http://www.bloomsbury.com/author/michael-ondaatje

Perfect child 


The little girl had to be perfect, because in the eyes of other people, her sister was not. Her sister was disabled and the little girl felt that she needed to excel in order to achieve for both of them.

Every task at school had to be
completed to the best of her ability. Every task needed to be completed for both siblings. All tasks were repeated to ensure that they were flawless.

Essays were written and rewritten. Pages were stripped from exercise books. Words could not simply be crossed out, they had to be re scribed. Creases and ink splodges were not just ignored, they were eradicated and a new piece of paper was utilised. The process was time consuming and stressful because all the projects set seemed to take twice as long to complete and sometimes in the re writing, the original idea was lost.

English essays were particularly troublesome. Re drafts could take days, never mind hours and deadlines were sometimes not met. Marks were good but they could always be better, but when the little girl was striving so much for perfection, her brain had no room left to create inspirational ideas. She was exhausted by the process of revisions, but they had to be done. She could not sleep until she was satisfied with what she had produced, and even then there was a always a nagging doubt in her mind that she had missed something out or made an error. Worse still her words might just have offended the reader and that could never be the case.

Sleep did not come easy either. In her mind her words whirled and tumbled, falling in a chaotic fashion that she could not control. Yet control calmed her fears. Control meant that she could cope with being the sibling of someone with a disability; someone who unintentionally attracted a lot of attention. Attention that the little girl despised because she wanted to be invisible.

OCD not PND. 


A life lost in thought.

Today I read the following damning article in ‘The Guardian’, about the inadequate mental health care for pregnant women and new mothers.

I cried bitter tears.

http://gu.com/p/42hny

I was misdiagnosed with Post Natal Depression (PND) in 2006 when I actually had OCD. The net result of this misdiagnosis was that I was given the wrong treatment; counselling instead of CBT.

Eight years have passed by and I have missed out on some of the happiest moments of my life as a mother, because I have been so preoccupied by my intrusive thoughts and compulsions.

Eight years have been lost by going to bed in the afternoon and early evening, so that I could stop thinking.

Eight years have been lost when I could have been understood by my family and friends.

I do not blame OCD for my loss. I do not blame myself. But I do blame the doctors that saw me in those early days and got my diagnosis wrong.They got it wrong because there was and still is so much confusion about OCD and its symptoms, even amongst healthcare professionals.

The media has misrepresented the condition as an amusing lifestyle choice, so that when I had a recent breakdown, no one thought that it might have been because of my OCD.

I even blame the Internet for providing me with such conflicting information.

However, tonight my anger is directed towards those, who in their ignorance, believe that OCD is not a disability. Let me correct them, it is named in the Disability Act. It is in the top 10 of the most debilitating conditions in the world. It affects 1 in 100 people. Which means that if you have not got OCD yourself, then you will probably have met someone who has.

OCD is debilitating. If it is not diagnosed immediately during or post pregnancy it causes devastation. Fact. It happened to me.

Dark. Click. Back to the wall. Repeat.


All children sneak downstairs at some point, to listen to what their parents are doing late at night and the little girl was no exception. She often sat on the stairs listening to her parents talk and she took comfort knowing that they were safe.

On this particular night, the wind was howling and the giant oak tree in the garden was shedding its leaves at rather an alarming rate. The little girl descended the stairs hoping to obtain some comfort from her parents, as storms frightened her. They were watching television in the front room.

Stealthily, she crept to the lounge door and peered into the flickering gloom. What she saw on the screen made her freeze with fright. A man, who was lying in bed asleep, was approached by an intruder and shot in the back. The little girl bolted from the doorway and ran upstairs as fast as her little legs would carry her. She shut the bedroom door, and significantly, made sure that it clicked firmly. Infact she did this several more times just to ensure that it really was shut and jumped back into bed. However, she felt unsure and got up again to check that the door was shut.

When she finally lay down, her instinct told her not to lie with her face to the wall like the man in the film, but with her back to the wall so that she could see the intruder as he approached. Still unsettled, she rose from the bed and she checked the door again for the reassuring click, then climbed beneath her duvet once more, but very slowly this time, placing her back once again next to the wall. Did the door click? She needed to check again. She wasn’t sure. She had to be sure.

The following night the little girl decided not to get ready for bed with the light on incase someone was watching the house. If an intruder, saw her, in the glowing light of her room, he would know it was time to come to her room and kill her. The door clicked. Back to the wall.

Dark.Click.Back to the wall.

Dark.Click.Back to the wall.

Dark. Click. Back to the wall.

Repeat.

The Lost City of Atlantis


Each week the little girl devoured a story about the lost city of Atlantis. In her mind’s eye she became a child who dwelled within the city’s limits. Dramatic images entwined themselves into her imagination. When she was there she felt safe. She felt at home.

However, the trouble with stories is that unless you cheat and read the final page, the end can come as quite a shock. The girl was not expecting an unhappy ending. She had previously read tales of wardrobes leading to snowy realms and children who believed that they could save a frozen world from evil. But in this tale of Atlantis it did not end well.

As the horrific image of the tidal wave thundered into view, something in the small child’s mind faltered and stuck and the fear of the wave stayed with her forever, even on her honeymoon. But that is another story of an older girl who no longer knew how to stop the tidal flow of fear.

OCD and pregnancy


Although I was not officially diagnosed with OCD until I was 45, I suspected that my brain was different to other people’s long before that, especially when I thought about pregnancy.

I regularly had intrusive thoughts about being pregnant. Imagine desperately wanting a child, but at the same time as trying to conceive you imagined pregnancy as though it was like carrying a parasite inside you. This fear of parasites was very real and intruded my thoughts regularly. All day long. I would imagine the parasite feeding off my blood supply; a vicious way to ruin my day.

But I was trying to conceive a child and this is what I was thinking about at the time. It was a really disturbing chapter of my life for me. But like the little girl who blamed herself for the tiny bird’s death and who thought that she could make a plane crash, I wasn’t about to tell anyone about what I was thinking. It sounded crazy right? I would dread lying in bed at night because these intrusive thoughts were at their worst in the twilight hours. I was so lonely and felt so isolated because of my thoughts, yet I could not reveal them to a living soul or the deep anxiety that they caused me, even to my husband. Especially to my husband.

I wanted a child more than anything else in the world. We tried for several years to get pregnant and my little boy’s conception was the happiest day of my life. I discovered he existed on Christmas Eve and it also snowed that same day. Perfect.

However, I now know that the thoughts that I had back then, were as a result of OCD. I can never get that time back. Never. OCD robs people of happiness. It is like one of the dementors in the Harry Potter novels by J.K.Rowling. Terrifyingly real for me.

Wikipedia says this about Rowling’s creations:

“In the books, dementors have a generally human shape, approximately 3 metres (10 feet) in height, covered in dark, hooded cloaks that reveal only their decayed-looking hands. Beneath the cloak, dementors are eyeless, and the only feature of note is the perpetually indrawn breath, by which they consume the emotions and good memories of human beings, forcing the victim to relive its worst memories alone. According to the author, dementors grow like fungi in dark, moist places, creating a dense, chilly fog. Although they are implied to be sentient, this is left ambiguous. The presence of a dementor makes the surrounding atmosphere grow cold and dark, and the effects are cumulative with the number of dementors present. The culmination of their power is the ‘Dementor’s Kiss’, wherein the dementor latches its mouth onto a victim’s lips and consumes its psyche, presumably to leave the victim in a vegetative state. Dementors are invisible to Muggles, but affect them otherwise identically.”

Imagine a dementor and you are in my head with OCD.

How OCD began.The tale of a little bird.


“With anything young and tender the most important part of the task is the beginning of it; for that is the time at which the character is being formed and the desired impression more readily taken.”                                           

Plato~ ‘The Republic.’

A little girl crept into her parents’ garage even though she knew that it was out of bounds. She could hear the distressed cries of a baby bird and her heart exploded with compassion.



Tentatively she stepped towards the frightened creature and realised that it was injured and dirty. In her 8 year old wisdom, she decided that she would try to bathe its pain away and looked for a suitable receptacle.

Gently she lowered the tiny bird into the water and began to wash its wings. But the bird took fright and jumped onto the floor, trying to escape. The girl cried. She had only wanted to make it better.

As the girl sobbed the tiny bird began to shudder with fright. The girl did not know what to do. She should not have been in the garage in the first place.

Then the bird died and OCD was born.

Walking out of the garage in tears the little girl thought that the birds in the trees looked sinister and threatening. It was as though they knew what had happened to the tiny bird.

And then the fear began. The little girl became caught in an OCD loop of her own making. 



“I killed the bird and now the birds know and they all hate me. I must be more kind to everyone. I must look after everyone. If I don’t they might die as well and it will all be my fault.”

So that is what she did. She became responsible for everybody and everything and her brain was no longer at rest. Her brain was squawking like the birds who watched her leaving the tiny dead bird in the garage. Her brain was filled with responsibility and it was overwhelming; it was caught in an OCD loop. 

The next time that the little girl felt responsible was really terrifying. When you are a child your imagination is vivid. So vivid in the little girl’s case, that she really believed that she could actually make things happen; but not in a sugar and spice way. More like in a big bad wolf sort of way.

The room was peaceful, it smelt of perfectly laundered sheets and was full of the little girl’s most treasured possessions, but she was afraid. Very afraid. Overhead, she could hear an aeroplane and it was getting closer and closer by the second. In her mind the little girl was fighting thoughts of the plane because she knew that if she did think about it then untold damage might just occur to her loved ones.

As the plane approached the little girl suddenly had a very frightening thought. If she imagined the plane crashing then it would. It would crash on top of her house and kill everyone inside and it would all be her fault. The child trembled and sweat poured off her pale, shivering body. Do not think. Do not think. Do not think. But the more she tried not to think about the plane crashing the more times she saw it kill her family and she sobbed, loud guttural sobs, that drew the attention of her parents.

But when her parents came into her room to see why she was so distressed, the little girl could not tell them that she could make a plane crash. Her secret gnawed away inside her and so her secret remained a secret, when it should have been told.

Photos courtesy of Ed Gregory at:

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