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.

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