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.

Editor and Founder Vrinda Pendred discusses how those ‘raging hormones’ in adolescence can make Tourette’s Syndrome worse – and how to cope.

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.

We all know about ‘raging hormones’ in adolescence. I think most of us are aware that the key hormones involved in puberty are oestrogen (for girls) and testosterone (for boys), the production of which increase dramatically within the body during that difficult time. But what’s not often talked about is how those hormonal changes affect neurotransmitters – chemicals in the body that pass information from one neuron to another – particularly, dopamine and serotonin.

The impact on these neurotransmitters during adolescence means it is likely to be an especially challenging time for a child diagnosed with a condition like ADHD, OCD, autism or, of course, Tourette’s Syndrome. No one told me this, when I was a teenager, but it is such an important topic and one that is not commonly understood by parents and teachers alike, so I want to spend some time discussing it here.

Rising Dopamine Levels

Dopamine is a key component in learning, memory, concentration, mood stability and (of most direct relevance to Tourette’s Syndrome) motor control. It also keeps us motivated and raring to go. Too little dopamine and you can become moody, unfocused, unsettled, depressed, disinterested in life or, in extreme cases, catatonic.

Adolescents face the opposite problem: dopamine levels rise during this time of life. This leads to a low boredom threshold and a keen desire for thrills and instant gratification, not to mention periods of elevated mood and poor impulse control – essentially, a feeling that they can do anything and somehow they’ll get away with it. For some, it can be a dangerous time. Thankfully, for most of us, this feeling eases off in our late teens, as we move into adulthood and develop ‘cognitive control’.

Notably, Tourette’s is all about being unable to control yourself; and studies have shown that Tourette’s typically ‘calms down’ in late adolescence / early adulthood, the implication being that tics are at their worst during adolescence – when hormones are at their most chaotic. But how can someone with an uncontrollable nervous disorder develop that ‘cognitive control’ needed to stay calm and safe? There’s no simple answer, but I would say it comes down to finding healthier ways to channel the tics, or ways to distract yourself from them.

To give a personal example, I’ve always found dance to be a positive release of the nervous energy surging through me much of the time. I also love nothing more than to lose myself in a good book, which takes me away from my immediate surroundings and, after a time, makes me forget about my body…and miraculously I ‘forget to tic’ for a time. This gives my body time to calm down and heal itself, so it isn’t quite as ravaged by the tics when they return later. Similarly, my husband and I have noticed that our 11-year-old son ‘forgets to tic’ when he’s absorbed in a video game or drawing. It gives him a little time of reprieve, so he doesn’t kill his muscles with uncontrollable spasms. Scientists can’t explain why this happens, but it does.

Dopamine, Addiction and Medication

On another note, increased dopamine increases our susceptibility to addiction, which I think may tie in with the repetitive behaviours involved in Tourette’s. The body feels a nagging need for the tic, just as bad for you as any drug. This is also why I think it’s wise to proceed with caution when considering Tourette’s medication. My personal experience was one of my body developing a dependency on the drug; and during such key formative years in my life, I’m certain this played a part in shaping my adult brain. I don’t know exactly who I would be today if I hadn’t spent three years on mind-altering prescriptions. I’m not saying don’t try them – just: proceed with caution.

Dopamine Overload

On the more extreme end of the spectrum, too much dopamine is linked to paranoia, suspicion, aggression, wild mood swings and social withdrawal (symptoms of schizophrenia) – as well as OCD and ADHD. This can be induced with drugs such as amphetamines (historically used to treat ADHD) or very high levels of Selective Serotonin Reuptake Inhibitors (commonly prescribed to treat anxiety and depression), but it can also occur naturally within the brain. For instance, schizophrenia is a genetic condition one can have without any history of medication. There is also a modern argument that bipolar disorder and schizophrenia may actually be the same disorder.

In any event, no two people have the same level of dopamine (or any other bodily chemical, for that matter). Some have more, some have less. In my case, I think I have naturally elevated levels of dopamine, because my experience with antidepressants used to treat my Tourette’s induced symptoms of schizophrenia. I suspect our eldest son may have elevated dopamine, too – and now that he is entering puberty, I can see that dopamine has shot sky high in his body. It manifests in extreme mood swings, where he is the model child one moment and then suddenly he’s screaming, slamming doors, kicking his desk and throwing things, before collapsing into hysterical fits of tears. He also has moments when he is convinced virtually everyone in the world hates him, before finally remembering he’s actually very popular. He has been known to imagine his father is giving him weird looks, and to react accordingly. As you can imagine, it doesn’t make life easy.

How does this relate to Tourette’s? Because Tourette’s, like any health condition, is worsened by stress – and all of this is highly stressful! To give a concrete example, the other day our son had to do some maths homework. He went into it in a bad mood and returned the homework to me covered in scribbles, which he said were caused by tics. I tried to tell him that wasn’t just tics, that was rage, but I didn’t get to speak much before he was screaming at me again. The fact is, I believe it was tics – but it was caused by unnecessary anger launching him into a state of extreme stress. Later on, he understood this and was quite regretful of his behaviour. I tried the maths with him again the following day, when he was in a better mood. Guess what? He finished it in about five minutes, with a positive attitude and perfect handwriting, no scribbles to be seen.

This is tricky because in school, he often marks up his work with scribbles and pen stabs and dots, and some of the teachers don’t believe that it’s tics and therefore unavoidable. I can’t help but notice this only happens in certain classes, where I know our son doesn’t like the teachers. In other classes, where he loves his teachers, his work is strong and easy to read. What does this come down to? How relaxed, focused and engaged he feels in the lessons. The more bored, the less he is able to control the fidgeting (ADHD) and tics. I relate to this. Force me to sit through a long seminar and I end up ripping up all my fingernails because I simply cannot sit still – and I’m not an adolescent anymore. And that’s not just ADHD; some of that is Tourette’s.

Serotonin – the Highs and Lows

Dopamine goes hand in hand with another key neurotransmitter, serotonin, which plays a vital role in mood regulation, emotions, sleep and appetite. Serotonin levels fluctuate dramatically during adolescence. This is especially hard on girls, because serotonin is so closely linked with oestrogen, which rises and falls every month, right through to menopause (a topic for a future article).

Low serotonin levels are linked with eating disorders, loneliness, depression and self-harm – all commonly associated with adolescence, especially girls – as well as insomnia, panic attacks, anxiety, obesity, OCD, digestive problems and pain. In today’s world, such symptoms are usually treated with prescription medications – but in my personal experience, these problems naturally ease off as you move into adulthood. If you believe in evolution, there must be some reason these hormones and neurotransmitters shift in this way, at that period of life; we just aren’t channelling it the right way in modern society. We aren’t nomadic, we no longer settle down with someone at 15 and immediately start having babies, we do not hunt for food, etc. Our stress does not come in the form of threats from another tribe or a dangerous wild animal; it comes from final exams and the fear that we don’t wear the ‘right’ clothes to be considered cool.

And once again, all this stress worsens Tourette’s – not to mention associated conditions. It’s hard to separate labels like Tourette’s, ADHD and OCD at this age (or, maybe, at any age). They seem to bounce off each other until you feel like you’re going to lose your mind. I remember how hard it was, when I was younger, but at 34, it almost feels like it happened to another person and I just inherited her memories. Watching our son go through it is another matter.

I have faith that, as difficult is it is for him now (and as difficult as he is for the school and for us), he will sort of ‘grow out of it’, in time. I’ve had a motto since he was about seven: ‘He’ll be fine when he’s 25.’ People usually laugh when I say that, but I mean it – because I started to feel okay around that age. I never thought it was possible to feel as settled as I do today, but it really did somehow work out in the end – and I know it will for our son, as well.

Closing Thoughts

The point of today’s article is to emphasise that, if you have a teenager/pre-teen with Tourette’s, not only are they dealing with all the ups and downs of adolescence, but they’re dealing with the exacerbated medical symptoms associated with those ‘raging hormones’. That means it’s especially hard for them, right now – but it also means it will get better, for them and for you.

But if your child is not yet 12, like ours, the journey to adulthood can seem a long way off. While you wait, you might try encouraging your child to get plenty of exercise, to lift those serotonin levels, ease the stress with natural endorphins, sleep better, and channel the energy in a healthy way. Stretching is also great for similar reasons: it relaxes the body, allows time for meditation, and it can loosen muscles that have been tensed all day from tics.

Make sure they eat well, partly because they just should, but also because conditions like Tourette’s are influenced by diet. You may also consider giving your child supplements to help them along, especially if, like us, you can’t get them to eat properly at school. Bananas are great for increasing serotonin. I’ve also just today discovered the world of herbs that naturally reduce dopamine levels. I’ve done some personal research and started up a collection of strange sounding herbal remedies from all over the world. If any of it works for our son, I’ll be sure to share that experience, but for now, I encourage you to do your own research and find what works for you.

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.

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.

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.

Click below to order Check Mates now

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