Editor & Founder Vrinda Pendred shares a letter written to her local MP urging attention to be given to child & adolescent mental health.

So far in this series on Tourette’s Syndrome, we have discussed what Tourette’s is, the causes and triggers, key medications (including anti-depressants), as well as alternative treatments, such as diet and vitamin regimes, and even more extreme measures. We then talked about the grief process and how it relates to Tourette’s, how being diagnosed can be scary, and having to deal with bullying and teachers. If you missed any of these articles, please click one of the links above to read them.

I am so sorry for taking so long to write the next instalment in this series, but it’s been a difficult time, personally – for reasons directly relate to the series. On the back of that, I thought today I would share a letter I am sending to our local MP regarding our situation. If any of this resonates with you, I would urge you to take action wherever you are, too. If you’re in the UK like me, please click here for ways to contact your local authorities.

Dear ……….

I am writing regarding the shocking lack of care and support for children with special needs in the Stevenage area.

My son X is now 12 years old. He was diagnosed with autism around the age of 6. During that assessment process, the specialist at the Child Development Centre (CDC) told me it was ‘obvious’ that he also had ADHD, but NHS policy is that he can’t be assessed for two things at once, so they put him on a waiting list for a separate ADHD assessment. We waited and waited. It’s now been about 6 years and it still hasn’t happened.

Meanwhile, his mental and emotional health has tumbled year on year. By age 7 he was nightly having violent fits of rage at home, screaming, slamming doors, throwing and breaking things, slamming his head repeatedly against walls, screaming that he wanted to die, over and over. Still, we received zero support. The primary school he attended had placed him with a teacher who thought it sensible to throw him out of class every day rather than help him. She was fired and replaced by another teacher who did the same thing. She was fired and finally he was placed with a teacher who was simply nice to him and could see his potential and he did quite well.

There were then ups and downs over the years depending on teachers’ attitudes. In year 6, all the teachers had no time or patience for him and it got back to the stage it was at age 7. X actually began self-harming, ripping literally all the skin off the back of his hand, or his whole cheek, and gushing blood everywhere, then scabbed over for weeks and weeks. Much of this came down to him developing Tourette’s syndrome and OCD. One of the teachers flat out refused to listen to any of my insights about Tourette’s (I have it myself). She rejected my request to apply for him to have extra time on his SATS due to the distraction of tics and ADHD issues. I had to go behind her to the Deputy Head to arrange it.

Things got worse and worse and, as I was then on maternity leave for a year, I took him out of school for the final months of year 6 and home schooled him. The result was that he did so well on his SATS (112/120, with 100% on one of the maths reasoning papers) that he was placed in the top set for everything at secondary school. I tried to apply for him to have an EHCP through the local authority, to give him a positive start to his return to school. This application was previously made by the primary school. Both times, he was rejected on the grounds that he’s ‘too intelligent’. They disregarded all our points that intelligence doesn’t matter if you can’t make it through a lesson and learn any of the material.

Secondary school has gone horribly wrong. X was getting thrown out of class and sent to detention every single day until I made the school understand that it was ineffective on him because he was being punished for things often beyond his control and he just needed patience and understanding. Within the first month of school, the head of year told me maybe X didn’t belong in mainstream school. But there is nowhere for him to go unless a) we can somehow send him to private school or b) my husband or I can quit our job and homeschool for him, which I don’t think would benefit him. We can’t afford either option. The schools for children with special needs are all for kids with learning disabilities. X got placed in the top set for all classes. The SENCO agrees he doesn’t belong in a special school. She agreed there is nowhere really for kids in his position.

The head of year also told me X ‘just needs to learn to control the Tourette’s’, demonstrating a total lack of understanding of this condition. When I explained that is like saying a diabetic just needs to learn to control their insulin reactions, he didn’t understand how it was related, convinced Tourette’s is a psychological issue one can train oneself out of. I actually rang Tourette’s Action for help and they said they could give the school staff training. I’ve told the school. I don’t know if it’s being taken up. And for the record, X isn’t yelling swear words in class. He’s jerking around physically and can’t stop it, and then being yelled at by school staff and thrown out of class for being ‘disruptive’. Then he gets angry and he’s told his anger is unacceptable. Most of the staff won’t listen to anything I have to say regarding their attitudes to his condition, or his heightened anxiety and self-loathing being at the heart of every scenario. In fairness to the staff, I appreciate X can be challenging – but he is also a wonderful boy at the heart of it all, a boy who is struggling in a system he can’t fit into. That’s not necessarily the school’s fault – but it does demonstrate why he should have had intervention all those years ago when we first started applying.

When we first tried to get X diagnosed with Tourette’s to make it official with the schools, the GP decided he was an expert and that X didn’t have it and needed no referral. We had to fight to get the referral to the paediatric neurologist at the hospital, who said it was ‘obvious’ X had it and needed help and they were shocked at the attitude we had faced with it from other professionals. They then referred X for support at the Children and Adolescents Mental Health Services (CAMHS). That turned into a review meeting with a different person at CAMHS, every few months, telling the story from scratch each and every time and being told each time that we’d have regular sessions set up soon. After over a year had gone by, I got quite frustrated and was finally told they had no doctors. They were trying to interview for the position and not getting anywhere. After about 15 months, a temporary doctor was brought in from London and saw him six times and then said she had to ask permission for more sessions, after not addressing anything we initially sent him there for. She has said we really need to get him that EHCP but can’t try applying again until we have that ADHD diagnosis in writing.

We had a review meeting at the hospital regarding the Tourette’s. I took that time to ask yet again for the ADHD assessment to be done. This doctor at the hospital was also temporary and admitted she knew nothing about the local system. She sent a referral to the CDC, who wrote to me to say it had been ‘refused’ due to needing information from the school. Why can’t they just contact the school!? The GP rang me and said they had a copy of the letter and yes, the school need to do the referral. The GP said they personally have no involvement in the process. I asked the school and they said they never make such referrals and have no permission to do so and it needs to go through the GP. I rang the CDC again and was told to speak to someone who never answers her phone and won’t return my calls.

It has been SIX YEARS. Every single institution has failed us – the schools, the GP, the hospital, the CDC, CAMHS, and the local authority. Who cares how smart my child is if the teachers tell me he can’t make it through a single lesson without support that they can’t afford to give, and so he’s being kicked out of class left and right and spending most of his days in learning support not being taught anything. He is failing all his classes. Each report card is worse than the last. He is gaining a bad reputation that has led many parents to talk about him and stop talking to me, and led many children to walk away from him so that he’s losing good friends and falling in with the misfits and getting into terrible trouble. He’s only 12, so there is still time to turn it around before he’s at an age when things like drugs and alcohol abuse come into the picture. My child has so much potential and everyone is just leaving him to the most awful fate I can imagine. Moreover, my husband is a social worker and we have identified that X displays every warning sign for potential suicide. I keep saying if he really were in that position, he would probably be dead by the time any of these institutions took the time to intervene.

And X can’t be the only one. There must be other children lost in this outrageous system, simply because a bunch of adults think it’s somehow more important to fill in such and such form than to help a child in crisis – which is exactly what my child now is. Even if he somehow comes out of this okay, he can never get these precious years back. He will never be a child again. He is so angry and depressed and hates himself so much and thinks so badly of himself. It is beyond heartbreaking to see and hear. This is going to impact him forever, one way or another. This system CANNOT go on the way it is. It’s actually criminal. You see all these NSPCC adverts about children being abused at home. What about the abuse and neglect they suffer from government-funded institutions?

This NEEDS attention NOW.

Thank you for your time,

Vrinda Pendred

In our next article, we’ll be talking about how Tourette’s affects self-esteem, especially during adolescence. Please be sure to subscribe to this blog so you don’t miss out. Finally, if you’d like to read a detailed depiction of what Tourette’s is really like to live with, please read my short story The Passenger, available on Amazon Kindle and the Kindle phone/tablet app.  US Readers  UK Readers

Until next time….

Vrinda Pendred is a graduate of English with Creative Writing at Brunel University. She completed work experience with Random House and proofread for Mandala Publishing. She is married with two children and lives in Hertfordshire, England, where she does freelance editing and proofreading. She is also a writer, and you can learn more about her personal work here.

Vrinda has five neurological conditions: Tourette’s Syndrome, Obsessive-Compulsive Disorder, ADHD, High-Functioning Autism and bipolar disorder.  In 2010, she founded Conditional Publications with the intention of providing a creative outlet for people, and (hopefully) changing a few minds out there about what neurological disorders really are – including not just the limitations, pain or frustration, but also the more positive, beneficial ‘symptoms’ of these strange conditions.

She made three contributions to Conditional Publications’ debut release Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD. Since then, she has released a novel entitled The Ladder, inspired by her personal struggle with bipolar disorder, as well as a number of short stories, and a YA sci-fi /fantasy series called The Wisdom, all available for purchase from Amazon.

Following the recent #metoo campaign, Editor & Founder Vrinda Pendred shares her personal story of sexual assault, autism, and a system that does not care.

The recent #metoo campaign has women all over the world coming forward with their stories of sexual harassment and abuse. The running theme in these stories has been abuse at the hands of men; but this campaign started just days after I hit a dead end in my long search for justice against a female doctor who coerced me to allow a man to violate me. My story is not unique; I know there are many women out there who have gone through something similar, but have been silenced in some way, so the problem perpetuates. This is especially so for women (like me) with diagnoses such as autism, who are easy prey for such silencing, not to mention the depression that can follow. I don’t want that to happen anymore, and that’s why I’ve decided to share my story.

A ‘Pointless Examination’

In October 2015, I visited the local doctor to request a full investigation into severe, crippling cervical pain I had suffered for nearly twenty years. I had visited countless doctors about this problem before, but no one took me seriously – doctors rarely take female patients seriously. Even a female nurse told me, ‘Women just have pain – deal with it.’ Well, I tried, but things got so bad that I regularly found myself unable to move for a half hour or more; medicine didn’t help. I needed a diagnosis, so I could start looking for solutions.

An appointment was made for an ‘internal examination’, before sending me for an ultrasound. Without being informed beforehand, there were two doctors and a nurse present for the examination. One doctor (the one I’d met) was a man and a trainee – something that hadn’t been made clear to me. The senior doctor was a woman, while the nurse was there as a ‘chaperone’.

I told them I had just found out I was pregnant, but I had concerns that my problem would cause complications with delivery – as it had done with my first child. The female doctor invalidated my condition and said she thought the examination was ‘pointless’. However, if I wanted to proceed, it was perfectly safe and there was ‘absolutely no way’ it could harm the baby.

The examination was conducted by the female doctor. It hurt – a LOT – which I later learned was a sign that something was wrong. She shoved a hand inside my body and tugged and pushed around my cervix. I was so relieved when it was over. But when she’d finished and declared that everything seemed normal, she turned to the trainee doctor and said, ‘Okay, your turn.’

Alarmed, I said, ‘What do you mean? We already finished, didn’t we? You have the answer.’ The doctor proceeded to tell me that while that was true (it was even put in writing later that the examination was ‘not medically necessary’), she really needed me to let the other doctor shove his hand up me and yank around my most private, sensitive parts a second time, ‘for his training.’

I said, ‘But I’m in so much pain.’ The female doctor continued to pressure me.

What must be understood is that this was not a normal discussion. This was me lying on my back on an examination table, naked from the waist down, my legs splayed open, everything on display, bright lights in my eyes, with two doctors and a nurse staring down at me. If you had been in my position, what would you have said?

Even just that morning, if you had suggested to me that later that day I would actually give in and say, ‘Okay,’ to that second examination, I would have called you crazy. I might even have been offended. Yet that is exactly what I did.

Why? Because I was terrified.

Resurfacing Trauma

Something I never told any of the official organisations I complained to afterwards – or the lawyers, or the police, or the one journalist (only local) who bothered to respond to the dozens of enquiry emails I sent to all the newspapers I could think of – is that I was sexually abused on and off for four years, between the ages of three and seven, by the son of a former family ‘friend’. And when I lay on that table in the doctor’s surgery, undressed and hurting, with all those people staring down at me and that woman trying to make me feel like I owed them something, like they had any right to stick their hands up my body, I couldn’t help thinking of one of the only clear memories I have of being molested – of being held down on a bed and forced to ‘perform’ in front of that boy’s step-brother. (Looking back, it’s obvious both boys were subjects of sexual abuse themselves, the only reason I don’t harbour anger at them.)

The point is: I felt like a helpless little girl again, unable to say no or even scream. I gave in and let the trainee doctor violate me. It was even more painful. He looked embarrassed when it was done. When I was dressing, the doctors left but the nurse remained. What makes me angriest is that I also felt that stupid childish guilt and actually mumbled some sort of apology for being difficult. The nurse glanced in the direction the doctors had exited and told me, ‘It’s your body.’ I felt I had an ally. I was wrong.

Repercussions

When I came out, I was shaking. I told my husband, and he wanted to go back to the surgery and punch the doctors. I just wanted to forget it had ever happened. The next day, I felt all my pregnancy symptoms fade. A few days later, I wound up in hospital with a miscarriage. My hospital experience was also shocking. A nurse (another woman) accused me of faking the miscarriage. Later, I learned that if you fumble around with the cervix like those doctors did, you can break the mucus plug that forms in pregnancy and cause an abortion.

As a child, I told no one about the abuse I had suffered. But I was an adult now, and I sought justice – through the surgery, the local hospital, the NHS, the General Medical Council, and the Parliamentary and Health Service Ombudsman. The doctors’ statements were carefully worded by paid lawyers, while I just had me. Every official body rejected my complaint. Almost exactly on the two-year anniversary of the event, I received the last response I will ever get on this issue. It has been officially decided that:

• It was my choice to proceed with the examination while pregnant and, therefore, if it led to miscarriage, it’s my own fault (regardless of me making that choice based on false information given by the doctor).
• The laws pertaining to informed consent in this country don’t apply to me or my circumstances. (I don’t even believe this is true.)
• Everyone involved conveniently can’t remember me saying I was in pain, or objecting to anything – including the nurse I thought was on my side.
• I apparently had every opportunity to say ‘no’ (while lying half-naked and vulnerable on a table with two doctors and a nurse staring down at me, pressuring me to consent).
• The fact that I did object, and even complained that I was in intense pain, has been overlooked on the grounds that it’s just my word against that of the doctors – and what doctor is going to admit to pressuring the patient? When is there ever ‘proof’ that a rape victim said ‘no’? Does that mean the victim should be ignored?
• There was no ‘physical proof’ that I had been assaulted (when has there ever been proof of such an event?).

Interestingly, the doctor’s surgery have decided to ‘make some changes’ to their consent policies, in light of my complaint (a small victory, I suppose) – yet I’m told this is no indication that they may have made a mistake, and there is no need for anyone to apologise to me for the trauma I continue to suffer.

That two-year fight for justice left me angry, exhausted and disillusioned. I understand why so many women choose not to speak out: even now, in 2017, the system turns it around on you, makes you the enemy, accuses you of trying to damage people’s reputations, says it was your fault, and magnifies the trauma tenfold.

An Inability to Speak

Another point worth making is that I am autistic. And as much as I have learned to ‘fit in’, with age, I still often struggle with communication. My doctors should have seen this on my medical records – records that were requested by every official body I contacted later – and yet no one seemed to think it was relevant.

But it is, because when I feel scared, as I did on that examination table, I shut down. I refer to it as ‘imploding’. I sort of go inside myself and hide deep within, disconnecting myself from all the external stimuli that I just can’t handle in that moment. It’s one more reason why I felt unable to defend myself, that day. Moreover, I should have been classed as a ‘vulnerable patient’. Yet, these protective designations don’t seem to apply to those of us who are lucky enough, or have worked as hard as I have, to ‘appear normal’.

Where’s the Sisterhood?

Sexual assault from men? Of course it happens, far more frequently than anyone likes to admit. But in my case, the only people who showed any sympathy (apart from family and friends) were:

• The male trainee doctor (in his written statement, he expressed his condolences, and said he had decided he needed to go back to medical school for further training)
• The male police officer who told me he sadly had no jurisdiction in the matter, and suggested I start an action group to try to raise awareness of these things, just as his own wife did after she suffered something similar
• The male lawyer who told me he had seen too many cases like mine and every single time, the victim lost and had to fork out thousands in wasted legal fees

By contrast:

• The senior doctor who pressured me into letting them violate my body was a woman.
• The journalist who initially took an interest and then no longer cared was a woman.
• The nurse who seemed to be on my side at the time, but who later claimed she couldn’t remember me objecting or expressing pain, was a woman.
• Every single person who dealt with my complaints was a woman. And I told them all, ‘This is how things like rape have been permitted for so many thousands of years.’ And every one of them answered that with, ‘I understand you’re upset, Mrs Pendred, but there’s nothing we can do.’ When I asked what they, as women, would have done in my situation, they didn’t think that was relevant.

It’s not just men we have to deal with; it’s often other women – women who have been programmed to think women like me are just hysterical or melodramatic – women who somehow think it won’t happen to them. But it could happen to them. It could happen to all of us. And when it does, the law (at least in the UK) does not protect us.

Closing Thoughts

I told a (male) friend that this experience taught me that even though I never think about that childhood abuse anymore, it seems I never got over it. These things never leave you. He said that is a ‘stark realisation’ to have. Yes, it is.

Equally stark is that the reason I never shared that part of my story with all those official organisations was that I believed it would undermine my complaint. I expect they would have suggested my trauma clouded my perception of the situation. But if anything, it made me see more clearly. It made me see that after nearly thirty years, these things still happen; and still, nothing is done about it.

The baby would have been born 20 June 2016. I will be thinking of that unborn child every June for the rest of my life – just as I have thought about that incident of assault each October since it happened. I wonder if it will haunt the medical professionals involved, the way it will always haunt me.

Epilogue

I originally submitted this article to a major international Internet newspaper. They rejected it on the following grounds, which I feel are important to highlight:

1. They said they already had enough articles on this subject. The whole point of the #metoo campaign was to raise awareness of just how prevalent these things are, and yet major newspapers have decided they have heard enough, and the public don’t need to know any more. If they’re making such decisions regarding sexual abuse, just think of all the other important stories facing media restrictions.
2. They said it was unclear what my problem was – that I seem to be unhappy about an examination I knew I was going to have. Apparently, I didn’t make myself clear enough in my detailed descriptions of lying naked on the examination table, being pressured to have a second examination no one had warned me about, or the resulting trauma. It even seems that my agreement to the first examination means I lost the right to object to the second. I can’t help but think this kind of ‘logic’ is what leads some people to claim it is not possible for a woman to be raped by her husband.

It’s fine to reject the article. However, the reasoning is insulting and, I feel, reinforces my point. Again, women were involved in this decision – women who clearly think it won’t happen to them.

Vrinda Pendred is a graduate of English with Creative Writing at Brunel University. She completed work experience with Random House and proofread for Mandala Publishing. She is married with two children and lives in Hertfordshire, England, where she does freelance editing and proofreading. She is also a writer, and you can learn more about her personal work here.

Vrinda has five neurological conditions: Tourette’s Syndrome, Obsessive-Compulsive Disorder, ADHD, High-Functioning Autism and bipolar disorder.  In 2010, she founded Conditional Publications with the intention of providing a creative outlet for people, and (hopefully) changing a few minds out there about what neurological disorders really are – including not just the limitations, pain or frustration, but also the more positive, beneficial ‘symptoms’ of these strange conditions.

She made three contributions to Conditional Publications’ debut release Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD. Since then, she has released a novel entitled The Ladder, inspired by her personal struggle with bipolar disorder, as well as a number of short stories, and a YA sci-fi /fantasy series called The Wisdom, all available for purchase from Amazon.

Editor and Founder Vrinda Pendred discusses when we should show patience and understanding – and when enough is enough.

Friends and long-time readers will know I’m an advocate of learning and understanding, when it comes to neurological conditions. Those closer to me will also know my strong anti-abuse stance, and I’d like to take a moment to explain how I think this fits in with having patience and an open mind.

I grew up with an abusive father. He was very violent toward my mother, both in word and deed, and when I was ‘old enough’ he edged dangerously close to moving on to me. When I became a mother myself, I took the view that he wasn’t going to change, no matter how much I tried to help him, and I couldn’t have the poison in my son’s life. It has now been five years since I last spoke to my father.

My father has the sort of old-school pride that won’t allow him to see a psychologist, so he’s never been diagnosed with anything. But I’d put money on him being autistic, with OCD and borderline personality disorder. My own diagnoses and experience leave me wishing there were something I could do for him. ‘He almost can’t help it,’ I used to tell myself. ‘He finds emotions challenging. Be patient; he’s lost inside himself. You can see how unhappy he really is. He regrets the past, deep down, but is too scared to face up to all he’s done. He was abandoned and abused by his own parents. He just needs someone to love him unconditionally, like his parents never did.’ And so on.

I still think all of that’s true – except for one thing: he can help it. How? By seeing a doctor.

It sounds trite, but you can’t help someone who isn’t willing to help themselves. I recall a time when I was talking about my OCD and my father asked, ‘Where did all this come from?’

‘It’s genetic,’ I told him. ‘I got it from you and Mum.’

‘What are you talking about? You didn’t get it from me.’

I was incredulous. ‘Are you kidding? When I was growing up, you would sit down for breakfast, notice a fingerprint on the glass coffee table in the next room, and have to clean ALL THE GLASS IN THE HOUSE before you would eat with us.’

‘I – ‘

‘AND,’ I interrupted, ‘every time you came home from work, the first thing you’d do was go around the house fixing things. My best friend and I once deliberately ruffled the curtain a little, left a cupboard door open an inch, that sort of thing. You noticed everything within a minute. We timed you.’

‘Vrinda – ‘

‘And what about the time when I was nine years old and was so excited that my friend had loaned me her roller skates, I wore them all over the house. When I say on the sofa, I rested my feet on the coffee table and the wheels of the skates made the tiniest little scratch on the wood of the table. You went nuts. You screamed at me in my face and said we’d have to sell the TV to pay for a new coffee table. I was so scared. In the end, you found wood filler and fixed the scratch, but I never wore roller skates again. I was terrified.’

Even after listening to all this, my father grew stern and said firmly, ‘Vrinda, I do NOT have OCD.’

I tried a different tactic. ‘Do you realise that as I’m a girl, in order for me to have Tourette’s Syndrome, I have to have inherited the genes from BOTH of my parents?’ Silence. ‘That means you HAVE to have SOMETHING. Feel free to look it up in clinical psychiatry books.’

When he didn’t respond, I asked, ‘Why are you so afraid of admitting it, anyway? Do you have any idea how that makes me feel? It means that despite all your usually supportive words about my medical problems, you secretly feel these things are something to be ashamed of.’

He had no response for that – but he didn’t deny feeling that way, either, and he never saw a doctor, not for the OCD and certainly not for the more dangerous problems he suffers from that made my childhood a living nightmare. Naturally, this meant he never changed – so I changed. I stopped putting up with it and walked away.

I’ve had to walk away from a number of people, over the years, out of self-preservation. The number of birthday cards I get has diminished, but I’m much happier for it.

We can’t allow ourselves to get dragged down with people who are willing to let themselves fall apart. This was one of the main themes of my novel The Ladder. Something I think my father will never understand is that I still love him; I always will. And I pity him, because he is ultimately a prisoner of his own ego. But that doesn’t mean I have to keep him in my life, if his presence is destructive to me and my family.

It’s important to remember that no matter how much you love someone, you are not their therapist. If you are being mistreated, get out. It doesn’t matter if the abuser ‘can’t help it’. Point them in the direction of therapy and distance yourself until they’re better – if that ever happens. We should all try to exercise understanding for these people who may be in our lives, but we can understand and pity from a distance. Patience should be reserved for those who are really trying, and who really are getting better all the time – for those who want to get better.

I hope you all have (or can find your way to having) the healthy relationships you deserve. And if you found this article helpful, be sure to subscribe to our blog for more insights, as well as personal stories from our readers.

Vrinda Pendred is the Editor and Founder of Conditional Publications.  Additionally, she does freelance editing and proofreading and provides private English tuition.  She is also a writer, and you can learn more about her personal work here.

Vrinda has been diagnosed with Tourette’s Syndrome, Obsessive-Compulsive Disorder, ADHD, Autism and Bipolar Disorder.  Her ambition is to help others with such conditions find their voice through creative writing, and spread awareness to the general public.

Be sure to read her contributions to Conditional Publications’ debut release Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD.

]]> http://conditionalpublications.com/2015/05/13/understanding-doesnt-mean-accepting-abuse/feed/ 1 http://conditionalpublications.com/2015/04/28/making-relationships-work-when-youre-neuro-atypical/ http://conditionalpublications.com/2015/04/28/making-relationships-work-when-youre-neuro-atypical/#comments Tue, 28 Apr 2015 21:13:33 +0000 http://conditionalpublications.com/?p=2088 Editor Vrinda Pendred shares the importance of being entirely yourself, in all your relationships.

I’ve been with my husband twelve years, now, and we have a lively nine-year-old son. Things are good for us – very good. But for a long time, they weren’t, because aside from the usual issues of growing up, money problems and emotional baggage, I’ve been diagnosed with Tourette’s Syndrome, OCD, bipolar disorder, autism, ADHD and mild dyslexia – not to mention post-traumatic stress from being raised by a father I’m convinced has borderline personality disorder, on top of autism and extreme OCD. (I like to think everyone at my office regards me as charmingly eccentric, but I can’t verify this.)

I was diagnosed with Tourette’s when I was seven. A friend used to call me Bunny and point out every time I twitched my nose…and tell me to stop. I laughed it off and kept secret the fact that I’d torn the inside lining of my nose by scratching too much at an itch. It had bled and scabbed over, I kept picking at the scab, and now I felt the inexplicable need to stretch out my nose repeatedly to check if the scab had healed. It resulted in tearing open the wound over and over again with my twitching, and it was very painful. Yet somehow it felt satisfying. That, more than anything, I felt unable to share.

It wasn’t until I was 13 that I admitted to any of my strange thoughts and was finally diagnosed with OCD. Until then, I was convinced I was sick and crazy. I held my diagnoses close to my chest, terrified they meant I was broken, and certain all my friends would abandon me if they knew the depths of my insanity. This secret was eventually revealed in the most irrevocable way possible, when I developed symptoms of schizophrenia in response to prescribed medication and became convinced all of my friends were figments of my imagination – you heard me. What I didn’t know at the time was that you’re not supposed to give SSRIs to patients prone to manic episodes, as it can tip them over the edge, chemically.

See, I wasn’t diagnosed with bipolar disorder until I was well into my twenties. The diagnosis would have prevented a lot of heartache. I would have known, for instance, that the mood swings are made more extreme by pregnancy hormones. As I hadn’t yet been diagnosed, I spent the entirety of my pregnancy falling to pieces, screaming at my now husband, and nightly imagining all the ways I could kill myself. Visualising it brought relief, even though I had no intention of going through with it. Again, I felt unable to tell this to anyone. I genuinely feared the doctors would decide I was unfit for motherhood and take away my baby, so I hid the extent of my suffering for nine long months.

I was diagnosed with autism at the same time as bipolar. I’d suspected the ADHD a long time, so that came as no surprise. Dyslexia shocked me, as I’ve always been an avid reader, loved to write and I have excellent language skills. However, I have learned dyslexia is yet another of these conditions that is widely misunderstood, and I fit a less widely publicised description.

Returning to my marriage, my husband and I used to argue all the time, in our early years together. Now, we might have an argument once a year. What changed? Me.

That’s not to say my husband didn’t have his own challenges to overcome. He did. But there were many ongoing issues that were resolved simply by me learning to accept my diagnoses and stop keeping everything secret. I was so conditioned to hide myself, I would lock myself in the bathroom to cry in the dark, alone. I would smile and pretend everything was fine, because I was convinced no one would want to hear that I was suffering from intense muscle pain due to tics, or that I felt ugly and stupid because of the way my face kept contorting. When I failed socially, I believed people would think I was making excuses if I explained it as autism. I thought I’d be regarded as mad if I said I thought I was suffering a down-swing and expected to fall into a month-long state of depression, soon. And when those excuses sounded old, there was always the classic: I didn’t want to feel disabled. Talking about my problems would make it all too real and force me to acknowledge my lot in life.

These thoughts still run through my head, but these days, I choose to live by the principle: feel the fear and do it anyway. I’ve started answering my husband honestly when he asks how I am; if I’m in pain, I tell him. And you know what? He sympathises and lets me know he’s there. When I sense a mood shift I think will affect him, I warn him and he is understanding, accepting that at times I may be highly strung and at others, I may lie on the sofa watching TV every night for weeks, without motivation. When I don’t understand something social or I close off, I tell him I find it hard to open up and he respects that, gives me time – which, incidentally, encourages me to open up. Sometimes words get stuck in my throat and I can’t speak, if I’m seized by social panic. He helps me through those moments.

Of course, I’m fortunate beyond measure to have found such a husband. That said, it’s helped by the fact that he relates to some of my quirks, without qualifying for his own diagnoses. In fact, most of my close friends – including those who have stuck by me since we were little kids – have gone on to receive related diagnoses. My conclusion is that there must be certain personality traits we all share, as a result of our chemical imbalances. This allows us to connect on a deeper level, even when we seemingly have nothing else in common. We ‘get’ each other, as people. However, as children, we all argued like mad, too. Again, the difference has lain in maturing enough to talk about these things and try to understand each other. Before we developed that openness, it was easy to misunderstand each other’s quirks as deliberately hurtful. For instance, I used to think one of my friends was disinterested in what I had to say. I now know he’s very interested, but highly distracted because of his ADHD; so when I tell him something and he responds by changing the subject, I no longer take it personally. I know how hard he’s trying, and that he’ll address my comments in time, after he’s offloaded everything else fighting for attention in his head. He used to apologise profusely for seeming so rude, and get really down on himself. Now, we’ve learned to laugh about it and stop giving ourselves such a hard time for things we can’t really help.

Relationships are notoriously difficult to maintain when you’re what people like to call ‘neuro atypical’. But I don’t think they have to be. I think the secret, as in any relationship, is self-acceptance, honesty and trust. Be open about your challenges right from the start. If you experience rejection or general lack of support, it’s not a relationship worth pursuing. But if it is worthwhile – be it romantic or platonic – maintain that openness. Be wholly yourself, and return that acceptance when they’re open with you. Stop imagining your problems will burden your loved ones. They want to be there for you – as they know you want to support them.

If you have any tips for making relationships work, please share them by making a comment, below – and be sure to subscribe to this blog to read more insights and personal stories from our staff and our readers.

Vrinda Pendred
Editor & Founder

Vrinda Pendred is the Editor and Founder of Conditional Publications.  Additionally, she does freelance editing and proofreading and provides private English tuition.  She is also a writer, and you can learn more about her personal work here.

Vrinda has been diagnosed with Tourette’s Syndrome, Obsessive-Compulsive Disorder, ADHD, Autism and Bipolar Disorder.  Her ambition is to help others with such conditions find their voice through creative writing, and spread awareness to the general public.

Be sure to read her contributions to Conditional Publications’ debut release Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD.

]]> http://conditionalpublications.com/2015/04/28/making-relationships-work-when-youre-neuro-atypical/feed/ 5 http://conditionalpublications.com/2014/09/09/suicide-awareness-week-a-message-from-jennifer-scint/ http://conditionalpublications.com/2014/09/09/suicide-awareness-week-a-message-from-jennifer-scint/#respond Tue, 09 Sep 2014 19:22:15 +0000 http://conditionalpublications.com/?p=1912 Sometimes openness is necessary to promote awareness and hope for others. Sometimes your journey is meant not to be hidden and kept secret out of fear of judgement, but instead be shared. I admit it’s uncomfortable and a bit frightening, but I have a great passion for erasing the stigma that surrounds mental illness and suicide, and I am not ashamed of my journey. If judgement arises, I am confident enough to know it is ignorance or lack of knowledge and understanding that on another’s part, and not me. My journey is not one I wish to remain silent about because of the stigma, but one I wish to share throughout my lifetime in hopes that it may inspire and bring hope to other sufferers similar to myself.

With that being said, today marks the start of National Suicide Prevention week. On the way home from class tonight, I was flooded with images and thoughts about my journey thus far and what I wanted to convey. I am eternally grateful for all the people in my life, even those no longer part of my journey, who have been by my side during the lowest times. For the times they have talked and listened to me, and the times no words were necessary – just the act of being there was enough. I am thankful for the countless times they have held the hope for me when I had so little of my own. I am thankful for the times they have literally saved me from succumbing to my illness. I am thankful for the tools they have given me, the love (albeit sometimes tough love), and the few who have never left my side or given up on me. Not only have you saved me throughout the years, but you empowered me to want to save myself, which is huge.

The journey continues, and with that, the struggle continues; the struggle to find hope in perhaps even the smallest things…a laugh, kind word, hug, song…something that will sustain me until I have the strength to get up and continue on. As far as I have to go, I am happy and proud of myself for how far I have come. It’s been a long, vastly painful journey, but what I have learned from the pain is priceless. It has moulded me into the person I am, the person I am coming to love more and more. There’s a reason we’re all here, and I am determined to keep fighting and hoping so I can find my purpose.

So with that, I want to thank those who have shared in my journey and will continue to share in it. You all are the biggest blessings I have. In a world of immense pain, you have helped me see there is also immense joy and hope. Thank you.

I challenge those of you who see suicide as a mere selfish act to really reach out and get to know someone with mental illness. You will soon realize  there is more behind the stigma that is so pervasive in our society. There is great pain, but also a yearning for hope, understanding, and acceptance. Reach out and be the face of hope to someone who might be thinking of ending their life.

Just listen. Don’t judge.

Jennifer Scinto, Conditional Publications

Contributor to Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD

If you have a story or message to share, please contact us here. We don’t mind if your story is inspirational or simply a way of getting things off your chest.  We proofread all stories, but we censor nothing.  And if you want to make sure you don’t miss out on the stories other brave people share with us, be sure to click the ‘Subscribe’ button at the top-right of this page.

]]> http://conditionalpublications.com/2014/09/09/suicide-awareness-week-a-message-from-jennifer-scint/feed/ 0 http://conditionalpublications.com/2014/09/04/the-importance-of-asking-for-help/ http://conditionalpublications.com/2014/09/04/the-importance-of-asking-for-help/#respond Thu, 04 Sep 2014 06:22:06 +0000 http://conditionalpublications.com/?p=1905 Recently, a ‘Check Mate’ of mine sent a bunch of us a group message saying they were struggling to cope on their own and needed help. Around the same time, another friend made a public announcement that he had lost a loved one. Dozens of people flocked to show support. Some of us (like me!) haven’t even met him, but we care just the same, through the friendships we have formed online.

The key here is that while our support won’t help my friend grieve, or fix my other friend’s circumstances, neither of them is alone. They both have an outlet to release their difficult emotions.

So many of us – myself included – are afraid to reach out when we most need to. I was discussing this in that group message and we all agreed a lot of it comes down to fear of rejection. We worry we’re a burden on others, or that people will tire of our problems, or simply not care, and our feelings will be invalidated. We find it ‘easier’ to go it alone.

Message to self: this is STUPID.

It has never been easier to do anything alone. On the contrary, it’s stressful and overwhelming. And no one EXPECTS you to do it.

There’s a term in the world of investments that applies here: ‘diversification’. It refers to the art of investing in many different areas, each uncorrelated to one another, so if one area does poorly, the others will hopefully pick up the slack and you won’t lose all your money. The point? It’s a well-proven fact that putting all your eggs in one basket is a RISK.

None of us knows everything or is the best at everything. That’s the beauty of the world. There are so many varieties of people and lifestyles out there. They’re meant to complement one another. When you start a company, you don’t do it all on your own; you have a team, each member with different strengths to balance out each other’s weaknesses. I’m sure all of us would agree with this principle.

So why don’t we apply it to our lives?

We’re constantly told to be strong. When people ask how we are, we’re expected to say we’re ‘fine’ even when we’re not. If we’re unhappy, we’re meant to take some pills and shut up. But hiding your struggles / suppressing your sorrows until it’s too late is NOT strength. Admitting you find something hard takes courage, and being vulnerable with someone is a form of bravery. Swallowing your pride and fears and asking for help when you need it is one of the strongest things you can do.

I challenge you (and myself!) – instead of waiting until you collapse to ask for support, ask for it when you’re going through little challenges. The smaller the challenge, the simpler the support request. It doesn’t need to be drama all the time; regularly talking about the little things is just making conversation. Get people’s insight right away, when the problems are still tiny – before you feel like things are spiralling out of control. It will actually be less of a weight on your friends’ shoulders that way, too

If you have a story or message to share, please contact us here. We don’t mind if your story is inspirational or simply a way of getting things off your chest.  We proofread all stories, but we censor nothing.  And if you want to make sure you don’t miss out on the stories other brave people share with us, be sure to click the ‘Subscribe’ button at the top-right of this page.

Buddy’s Disease has never been a real diagnosis.  In fact, it’s not anything.  It does not exist outside of this bizarre form of censorship that I think everyone raised an eyebrow at.  For me, the removal of the words Tourette Syndrome implied that Tourette’s was in fact the obscenity that needed censoring and, therefore, it was something to be ashamed of.  Furthermore, calling it a disease made it sound like something contagious.  And I’d like to know whose bright idea it was to call it the idiotic ‘wholesome’ Buddy’s Disease.  I’m still not sure if they did this because they thought the topic was risqué or if they were worried about offending people who actually had Tourette’s.

The first time I saw that movie was in 1991 – coincidentally, the same year I was diagnosed with Tourette’s myself.  It was a dark secret that even I wasn’t expected to understand.  And I don’t think the media were comfortable with exposing it to the public.

Jump ahead to 2007 when the Le Petit Tourette episode of South Park first aired on television.  South Park…featuring Tourette’s?  Surely, that must be offensive!  One of my friends confessed that the whole time he was laughing at the episode, he felt guilty and worried I would be upset over it.  I surprised him: I had laughed too.  In fact, to this day I can’t think about certain lines from that show without choking with laughter.  And at least amongst the Tourettics I know, all of them who happened to like South Park also found it funny.  I would venture to say that, on the whole, the only people who really found it offensive were those who found South Park offensive in general.

In fact, even the Tourette Syndrome Association admitted that the creators of the show had done their research.  Yes, it was a great vehicle to throw as much foul language into a show as possible, but…the writers also took the time to open people’s eyes to the seriousness of the condition.  The more respectable character Kyle insists on the wrongness of mocking or mimicking real Tourette’s sufferers.  There is a scene where he sits through a group therapy session for Tourette’s patients and the patients explain the variety of tics they have.  I found myself watching open-mouthed because I have personally said many of the things those animated patients told Kyle.  ‘Most people say they don’t even notice’ – said while blinking furiously, snapping fingers and going Ding!  Sound familiar to anyone?

The show in no way glorified Tourette’s.  It wasn’t a scandalous exploitation documentary intended to shock and dismay.  It actually went beyond the stereotypes and taught people a little bit about a serious subject…but it made a lot of people laugh in the process.  Most importantly, it made me laugh at myself.  This was not accomplished by What About Bob?  South Park may not be everyone’s cup of tea, but the fact is: we have come a long way.

Was something happening in our global consciousness in 2007?  Because that happens to be the same year that The Big Bang Theory premiered on television.

I did some searching online for people’s views on the character of Dr Sheldon Cooper, as I felt certain he would have caused some controversy.  For anyone who doesn’t know, Sheldon very obviously has Asperger’s Syndrome (although the writers have refrained from ever stating this outright, so as not to turn the programme into a laugh-fest at something people can’t help), is asexual, and suffers from extreme Obsessive-Compulsive Disorder.  As with South Park, I think the writers must be doing some heavy research, because I regularly relate to Sheldon.  In fact, my husband and I often point out each other’s Sheldon-isms.  We think they’re sweet.

I was surprised to find that most people were more bothered by the stereotypical nerd angle to the show than anything else (which I will confess hadn’t even crossed my mind, because I do know people like that, and I’ll just admit it right now: I actually cried when Data died in Star Trek: Nemesis).

Within the autistic world (of which I am part), it seems a great many of us approve of having such a character on mainstream television.  Why?  Because at last we’ve moved beyond Rain Man!  Sheldon is eccentric.  Sheldon is frustrating.  Sheldon is often embarrassing.  But Sheldon has friends, he has a stable job, he even finds a girlfriend as ‘different’ as himself – Sheldon has a life.  Which is something I was been led to believe over the years is not possible for autistics.  The actor Jim Parsons himself has expressed the view that Sheldon accepted his differences a long time ago and takes pride in them, used them to get where he is in life, and is treating his assimilation into ‘normal society’ as a sort of scientific experiment.  Sometimes, he surprises himself by relating to the ‘ordinary’ people around him.

The important point is: Sheldon is not someone you feel sorry for.  Like many of us, he sometimes feels frustrated at being different from most people around him – but only because he wishes more people were as gifted as him.  He never thinks of himself as the odd one.  And why should he when we can see that everyone around him is just as ‘special’ in their own way, even the so-called girl-next-door?  Sheldon is never diagnosed or expected to take medication to change who he is.  And most importantly, he’s not crazy – his mother had him tested.

What fascinates me is that some autistics seem to have a problem with laughing at Sheldon’s OCD – because it’s something people ‘suffer’ from, a true discomfort and anxiety and therefore not a respectful subject for humour.  Well I have OCD too, and every time Sheldon knocks three times on the door I laugh…sympathetically.  I find it endearing.  I think there is an element of laughing with the character, because while not everyone has OCD, everyone does have some little neurosis, some ritual, some degree of irrationality hardwired into our brains.

Rain Man was released in 1988.  What About Bob? Came out in 1991.  It is now the end of 2012.  That means it has been 24 years since Rain Man and 21 years since Bob.  Between the two, it’s been about 22.3 years, and (forgiving this further allusion to South Park) that means it’s time we started being able to laugh at these things.

Why do we need to take our diagnoses so seriously all the time?  There is a time and place for everything.  Sometimes it’s right to be serious.  Sometimes we need people to understand that we are in pain and need help.  But other times, we need to stop dwelling on that pain and just try to enjoy life!  If all we do is concentrate on the grief, we will ruin ourselves.  We will miss all our inner beauty lying alongside the darkness.  We will miss all the good things that surround us.  I say laughter is the best medicine.  When we take our anxieties too seriously, we give them the power to take over our lives.  When we learn to see the absurdity in them, they lose a little of that power, and that’s the first step to overcoming them.

These television shows are waking up the public to diagnoses I was once given without explanation, to hold inside like a terrible secret I should be ashamed of.  They have either made it acceptable to open up about these things or they are a reflection of a shift in our society.  A shift for the better.  In a world with characters like Sheldon Cooper, being autistic is a bit like being American or English or Spanish.  It’s like a citizenship.  It’s not automatically a disease.  And it doesn’t mean you’re crazy.  But it does mean that sometimes you run into people who don’t speak your language, and that’s when the chaos starts.

And it turns out the humour lies in that chaos.  Rather than reject it on the grounds that it’s ‘offensive’, why not embrace the change in perspective?  Not everyone is going to go out and read a book about the reality of a neurological condition.  But whole nations will watch a popular extremist television programme.  Why not let the world peek into our lives in whatever way they can, until before anyone realises what’s happened, we have a society that accepts these diagnoses without judgment?  Why not accept ourselves?

In 1991, watching that film scene while consumed with unjustified shame, I could not have predicted how far we would have come in 22 years.  Perhaps the medical system still hasn’t improved much, but when I see these ‘outrageous’ TV shows that never would have been allowed when I was a child, back in the days when Tourette’s was a dirty word, it does leave me wondering: where will we be in 2024?

Hopefully, somewhere good.

]]> http://conditionalpublications.com/2012/10/17/weve-come-a-long-way-baby/feed/ 2 http://conditionalpublications.com/2012/10/10/system-has-to-change/ http://conditionalpublications.com/2012/10/10/system-has-to-change/#comments Wed, 10 Oct 2012 09:13:58 +0000 http://conditionalpublications.com/?p=1741 How many parents out there can relate to this?  The following is a genuine complaint letter written by a parent to a hospital in connection with desperate attempts to get in-school support for a child. All names have been changed.

Dear Sirs

I wish to make a formal complaint about the lack of service my son has received from the Child Development Centre.

We have been struggling to get some form of medical intervention for our son John for the last two years. We initially spoke to the GP, who advised we would need to go through the school, who would make the appropriate referrals. Nothing happened with John’s previous school and his difficulties continued not to be addressed, while John’s self-esteem plummeted and he was branded ‘naughty’, despite a long-running family history of neurological conditions such as ADHD and Autism.

We switched his school in late 2011 and finally referrals were made, following a three-day exclusion from school in July 2012 when John was only six years old. We were eventually offered an appointment with Dr X at the Child Development Centre for 9am on 17th September.

On Friday, 31st August, we received a letter after work stating that this appointment had been cancelled and rearranged for 12pm on Wednesday, 5th September. I called on Monday, 3rd September and spoke to the receptionist, Mary, at that time to advise that this appointment was impossible for us because:

1) My husband and I only had 2 days to provide our respective employers with notice that we would need to take time off work, which is not allowed by either of our workplaces (we are required to provide at least a week’s notice for time off)

2) I work in London, and the appointment time meant I would need to take a whole day off work to make the appointment, which would particularly not be acceptable at my office with only 2 days’ notice – not to mention it would eat up my remaining 2 days of holiday time for the year, which inevitably will need to be used for other school events, and would need to be used if John had another incident and required home time during the term

3) My husband works in a care home and to book holiday there requires shifting the schedules of every other worker there

4) To top it off, 5th September was our son’s very first day back at school with a brand new teacher in a new year – bearing in mind that his difficulties surround school, it would be unacceptable to take John out of school on the first day

We were then offered an appointment for 9th October at 10am. I received a voicemail on my mobile phone at 5.08pm on 8th October to notify us that the appointment had been cancelled for the outrageous reason that, after four weeks, Dr X only just realised the appointment time allotted was not long enough for an initial consultation – Dr X wants to see John for an hour but only a half hour was booked into the diary.

There are not words for how unacceptable this is – particularly bearing in mind that one of the things my son is being assessed for is organisational skills! Is the irony lost on everyone there?

I called and spoke to Mary at 9am today to get this dealt with. I was told I would be telephoned back in the next two hours. I had to call back at 12.30pm to find out what was happening. I was told a manager would need to speak to me, which I agreed I wanted. I was called again by Mary around 1.30pm, being offered an appointment time this Thursday at 12pm.

Now, we have been here before. I explained for perhaps the fourth time that we cannot make such an appointment time, particularly with 2 days’ notice. When I explained again that this is the second time the appointment has been cancelled, I was told that no, it was the first because on the first occasion, apparently the notes had been taken down as ‘cancelled by the parent’. No – I turned down the unacceptable offer of an appointment that was made to replace another appointment that Dr X cancelled. I, the parent, never cancelled our initial appointment. (This was later agreed upon with Sarah, in total contradiction of what Mary told me).

I was also told this new 12pm appointment time is after Dr X finishes her clinic, i.e. after-hours. I said we need the appointment in the morning and was told Dr X only starts the appointments at 10am. If I began my work day at 10am, I would have simply called yesterday to let the parent know that the appointment had to be moved a half-hour earlier and I would have come into work early, because it would be my own fault for not bothering to check the diary in the last 4 weeks and spot the problem. I would also bend over backwards to make up for the mistake. I’ve been told apparently Dr X is going out of her way for us – but this is not true if I’ve stated so many times that we cannot do a 12pm appointment and no one will offer us a morning slot.

Mary rang me again to say the only appointment being offered was 12pm and Dr X will not see us before 10am. I work from 7.45am to 5.30pm each day – I have little sympathy for a doctor who cannot be more flexible in order to correct her own mistake. Furthermore, I am appalled at the way Mary asked me to confirm if I was rejecting the newly offered appointment time, in a way that suggested I’m the one being difficult when I have explained time and time again why we cannot have that appointment time, and after we have been treated so disgracefully for the last two months.

Mary repeatedly said I would need to speak to a manager and offered to have the manager call me directly. However, this took hours to actually happen. I asked how to make a formal complaint and was told again that I would need to ask the manager. Mary even acknowledged that she had just spoken to the manager herself, and yet the manager was not available to speak to me. I can’t help but feel I was fobbed off since 9am by one person after another. Mary also insisted that she could not tell me how to make a complaint. She then told me that I was being unfair to her by being so angry when none of this was her fault (despite the fact that when I did speak to the manager, Sarah, I was told it was the fault of the person who made the original appointment…who happens to be Mary).

I worked as a receptionist for years, and if I had ever taken a call from someone in my position who was as (rightfully) upset as I am, I would have had someone in charge speak to the caller hours ago. I would have actually tried to find a solution to the problem.

The icing on the cake is that at the end of the conversation, Mary simply talked over me to say she was going and hung up the phone on me! (Sarah said Mary had a different angle on the conversation – I’m not surprised.)

I was later finally telephoned by Sarah at the Hospital and told:

1) The diary mishap is not the doctor’s fault, it’s an administrative error (despite Mary in the morning telling me she only found out about it herself this morning and it was down to the doctor).

2) That contrary to my suggestion, administration does not represent the doctor in any way and you should not be viewed as a team the way that at my office, if one member of staff made such a mistake, it would damage the image of the whole company. I would like you to understand that I don’t care who is ultimately to blame for this situation – you are all incriminated in it and no one has handled this properly.

3) That the doctor would not have known about the appointment time issue because ‘it doesn’t work like that; the doctors don’t regularly check their schedules’. It goes without saying that there is absolutely no excuse for this, and I am shocked at the admission of such irresponsibility.

4) That ‘now that we know the reason you can’t make an afternoon appointment, we can try to arrange something else’, despite me telling Mary the reasons we could not make these appointment times over and over and over again, beginning with our original conversation in September.

Sarah also at last gave me the address to write to with a formal complaint. It was as simple as an address. How was Mary unable to provide me with this information?

For all you know, by this point John has been thrown out of school. You have no idea what’s been happening with him, your system is chaos, and it has been made abundantly clear that no one there actually cares about my child’s wellbeing. I don’t know what we’re supposed to do to get John the support he needs, short of winning the lottery and quitting my job to teach him myself, which is clearly not happening any time soon. I don’t know what I pay my taxes for when I’ve been fighting for 2 years to get John even this far in the system.

The most frustrating thing is that this complaint is effectively worthless, because who do you actually answer to? There is no direct organisation to complain to, short of writing to my MP and contacting the newspapers (which I’m probably going to do) – what does it matter to you if I’m this upset? At my company, if we made a huge mistake and the client called up to complain about it, if we fobbed them off for hours, denied culpability, refused to comply with the client’s needs even though we could physically make arrangements to comply, refused to let someone in charge speak to them to deal with the situation and then hung up on them, we would lose money, our reputation would be tarnished and the company would suffer. We would never get away with such practice. Why is it then somehow okay for the NHS to behave this way, regarding our children?

If anyone has the audacity to wonder why I’m so angry, or suggest that I shouldn’t be, as it was suggested by Mary on the phone today, I would ask you all to remember that it is a SIX-YEAR-OLD who loses out in this, and that is 100% your fault. Child Development, indeed. I cannot believe my child’s future is in the hands of such a shambolic impersonal operation, as if it is somehow representative of stability and healthy interpersonal skills.

Yours faithfully

Distressed Parent

]]> http://conditionalpublications.com/2012/10/10/system-has-to-change/feed/ 1 http://conditionalpublications.com/2011/01/24/neuro-atypical-we-are-all-x-men/ http://conditionalpublications.com/2011/01/24/neuro-atypical-we-are-all-x-men/#comments Mon, 24 Jan 2011 20:24:37 +0000 http://conditionalpublications.com/?p=444 Okay, who watched X-Men 3: The Last Stand and felt like, in many ways, it was the story of their life?  Not with me?  Let me explain.

In a nutshell: the authorities have discovered a new drug to ‘cure’ the mutants of their ‘abnormalities’.  Mutants queue up in the thousands to receive this ‘cure’, but Magneto does everything in his power to sabotage it.  Magneto believes the mutants are special for their ‘unnatural’ abilities.  He thinks they should revel in their differences.  He takes this view to the extremes, sadly…but each time I’ve watched the film, I couldn’t help thinking how much it was like the struggle of living with a neurological condition.

There are ‘cures’ out there, and they are unarguably a godsend for people who can’t function in life without them…but for those of us who – if properly motivated – could find alternative means of dealing with these conditions…do we need a ‘cure’?  Are we that damaged, or do we just have different types of brains that lead to different thinking styles, different ways of feeling and responding, different abilities (just like everyone in the world, really)?

They called it ‘The Last Stand’ – I know where I stand on these issues, but where do you?

I suppose I’m a bit more like Professor Xavier: I believe in allowing the ‘mutants’ to make up their own minds on this subject, rather than tricking and bludgeoning them into agreeing with my perspective, as Magneto did.  But for what it’s worth, I like to think that there are darker sides to these conditions that we should fight.  It’s wrong to sink into them until they consume us and we lose ourselves.  That is illness.  Some people can’t help falling prey to this illness, because their brains won’t allow it, and I appreciate they need the drugs.

But for the rest of us, perhaps we’re overmedicating – and not just with prescriptions.  Perhaps we spend too much time feeling shameful about our brains being a little bit different, and we forget that all brains are different, that there is no such thing as a normal brain.  Perhaps we forget that our brains have made us who we are, through chemicals, neurons and the life experience they have given to us.  Do we really hate ourselves so much that we’d risk losing our personalities (those drugs are definitely mind-altering – I speak from experience) just to remove symptoms that are often only so bad because others around us don’t accept them?

I have said for years that if the world accepted our differences, we could find a way to live comfortably enough with a vast proportion of our symptoms.  This was the inspiration behind my story The Royal Bank of Scotland.  To add to that story, perhaps in such an acceptant world, we would also feel less afraid to seek help for the symptoms that aren’t so easy to manage, because there would be less stigma involved.

What do you think? Vrinda Pendred Editor & Founder

The Royal Bank of Scotland can be found in Check Mates: A Collection of Fiction, Poetry & Artwork about Obsessive-Compulsive Disorder, by People with OCD, available on Amazon in paperback and Kindle.

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