I AM SAM
People have said to me for a while now that I should write a blog. I’ve written a few things on Facebook before about my story and the feedback I’ve had has been overwhelming. I really don’t know if anyone will follow or read my blogs. I have no idea if this will go anywhere but here goes……
All I know is I hope that this will be a brutally honest, sometimes scary, sometimes funny and sometimes joyous read. Sometimes it will just be my musings about life.
As this is my first ever blog, I might as well go back to the very beginning and explain my journey and what has inspired me to start writing. It’s quite a long read and I guess at times some may find it upsetting. Please don’t be upset by it. It is what is and it’s made me who I am and my family as strong as we are. All I ask is for you to read all of it.
There may be swearing and brutal honesty but hey, that’s me
So where do I begin? I guess let’s start with who am I.
I AM SAM.
In 3 months I will be 40. I am married to Jon and we have 2 children. Z is 8 and then there is his sister, K who is 12. She is the reason for this. Don’t get me wrong, I love her more than anything in this world but believe me when I say she is the main reason behind my grey hair which is a beautiful shade of ginger at the moment care of L’Oreal – shade 6:45 to be precise. Well actually I really am a natural red head but those greys need covering and they need covering fast.
So why the grey hairs, surely a 12 year old can’t have caused me that much stress. This beautiful, cheeky, gorgeous, funny, crazy young lady can’t be that hard work can she? Yes she can.
You see K has ADHD. But why would she “just” have ADHD. Oh nooooo she has severe ADHD.
Now some of you may have got this far and said “Oh shut up, ADHD does not exist. It’s just bad parenting” or “Pah, ADHD – what a load of nonsense, its just a label for naughty children.” Well if you are one of those people I’m telling you now you have 2 choices.
- Carry on reading and see if I change your mind
- Fuck off and stop reading
Now you may think I’m being ever so slightly rude in option 2 but when you’ve been through what my family have, I think I’m quite entitled to.
K was born 8 days late following a fairly normal pregnancy and birth. The only “blip” in the birth was that she wasn’t breathing when she was born. She was put straight onto oxygen and after what was only a few seconds but what felt like an eternity she was screaming her lungs out. I still believe to this day that it was that moment that changed the road we were destined to go on.
Most babies are sleeping through by about 12 – 14 weeks. Not our daughter. Nope not a chance of that happening. In fact she did not sleep through the night until she was 6 years old and prescribed a sleep medication from a paediatrician as she had been diagnosed with a sleep disorder – which she still has to this day.
I guess the real issues were first noticeable when she was about 3 and I was pregnant with her brother. The tantrums had never gone away. We had read every guide to dealing with toddler tantrums on the market but nothing bloody worked. She was a more than a handful. Have you seen see that advert where the kid lies down in the supermarket kicking and screaming – I actually think the producers of that advert were secretly following us around at times because it most definitely modelled on her!
Anyway, let’s skip to her early years at school. There were many misdemeanours. First there was the time she took a toy and ran around bopping her friends on the head. Running closely behind trying to catch her was the class teacher with a clipboard writing down the names of the children who had been bopped on the head so that the parents could be informed of a “head injury”. Then there was the time her teacher called me into the class to show me that K had written her first word. It was a little bit unexpected and a bit inappropriate but they were pleased she had written something at long last. Ok, the word was “poo” and she had drawn a massive turd to show us exactly what it was but, nevertheless she had written something. However the highlight of the school year has to be when the same teacher called me in to say that at lunchtime she was standing in the dinner queue and was clearly bored of waiting and decided to shout out “ For fucks sake how much longer” (She was 5 or 6 then) I think I was more mortified at the fact that when I looked at the teacher and said “I am so embarrassed I have no idea where she heard that word from” the teacher simply turned and said “reallllly???” – Proper mortification.
At the beginning I said this blog may have some sweary words but I promise you, when that happened swearing did not happen in my house (well not in front of her anyway!) So I genuinely don’t know where she learnt that from.
As time went on, school got worse and worse. In fact her first primary school destroyed her. Completely and utterly destroyed her. From now on I will refer to the school as SHARPS. My husband and I know what this means and that’s all I need.
It was clear she was not functioning in the same way as her peers. She was an incredibly bright and funny kid but school was a disaster. I’m not entirely sure what was worse, School or the shitty system known as Camhs. Camhs is the Child and Adolescent Mental Health Service. My husband has affectionately renamed it as “Crap At Mental Health Support”.
When she was 6 she was referred to a paediatrician who diagnosed her with ADHD and referred us on for support from camhs. The biggest mistake ever. Camhs suck. I mean they really suck. I am yet to meet a parent who has something positive to say about them. They are beyond appalling and should be under the observation of a governing body.
But let’s take it back to school – I’ve got loads to say about camhs later.
We had applied for a statement to get her extra support in school except the local authority refused. The system really doesn’t care about the child, just about how much money they can save. Anyway, after much fighting the Local Authority carried out the assessment and agreed she needed a statement and extra support. Recommendations were made by an educational psychologist including giving her full access to a laptop computer as she was showing signs of being dyslexia. But SHARPS didn’t provide this. Every time I asked if she had been able to use them I was given a different excuse, until her assistant eventually told me that “she has to earn them, they are not a reward”. So the child who was struggling in the classroom was being denied access to equipment that could have had a massive positive impact on her.
There are so many examples of the school failing her it’s unbelievable. Now don’t get me wrong. I am not in denial. K is difficult. She is beyond difficult. She can be naughty. She is hyperactive. She is challenging. BUT she is gorgeous. She is intelligent. She is very frustrated. She is misunderstood.
By the time she was in year 4, I knew things were getting worse. I asked her head teacher if it was the right school for her. I was met with “yes, we’re in for a bumpy journey with her but we’ll get there” – She was basically saying to me that they would beat it out of her.
Now funny story about the head teacher. She was the interim head teacher. The head teacher before her had had “left” for reasons that still aren’t fully known but we do know some of what happened.
Jon actually has extremely abusive emails from him telling us how awful we are as parents and how dreadful K was.
Anyway, I digress, back to the funny story. The interim head teacher tried to be pleasant to K once. She asked her if she had been trick or treating for Halloween. K’s response was “yes, I was going to go dressed up as you”. Luckily the head teacher was deaf in one ear so never heard.
By the time we removed her from SHARPS, the teaching staff had taken to locking her in a very small room. They would remove her tights and shoes in case she strangled herself. The staff stood on the outside of the room holding the door shut so she could not get out. I had to walk past this room to get to her brothers class. She would be inside screaming and crying to be let out. It caused irreparable damage to her mental health. To this day she hates being in small rooms. I guess some of you reading won’t believe that actually happened. But it did. I don’t know how many times but it happened a lot and there are many parents who witnessed this and have also approached me about other ways they saw the staff mistreating her.
There was also the time I was called into school to give her medication. They pinned her down to the floor and I had to force the medication into her mouth. The problem was I was in such a state as we were battling to get her help from Camhs that I didn’t know what day of the week it was at times and felt I had no option.
As I said we removed her in year 4 and sent her to another primary school. A school that had a special needs base. A school whose head teacher was beyond phenomenal. A head teacher who to this day still asks how K is. A head teacher who got us more help than anyone has ever done. A head teacher who has just been given Ofsted Outstanding in all areas. Our son is still at that school and we love it more than words can say.
Sadly by the time she went to the new school the damage had been done. K was already deteriorating fast. By 9 years old she had a break down and had to be admitted to a residential mental health hospital.
So what led us to that breakdown? Now obviously her first primary school had a lot to do with it. In fact I know of at least 4 other children who left that same primary school to be admitted to a residential mental health hospital. However a massive portion of blame has to be at the hands of Camhs.
When we were first referred to them we had to wait about 18 or so weeks for our first appointment. When that came, the nurse only saw us as a family once. The other 2 appointments were just myself and Jon. She then discharged us and told us to read a book!! (Told you they were crap)
When she deteriorated further we asked for more help but had to be re – referred. We had to wait a further 20 weeks for an initial appointment.
When we finally got our appointments they were meaningless. All they wanted to do was drug her. No therapy was offered – not one thing.
Hell doesn’t describe what we went through trying to get her help. By now she was suicidal. She was in such a low place it was heart-breaking. Not knowing how to help your child. Not knowing how to make things better doesn’t just hurt – It kills.
We found her sitting in the road waiting to be run over. We found her with a dressing gown rope around her neck threatening to strangle herself. We called Camhs when this happened and they said “sorry, there’s no-one here to help. Call back next week”.
Now this is the thing about ADHD. It’s not just about being hyperactive and crazy. It’s all-consuming and takes over your life. It effects every waking moment and can be crippling. It can lead to serious mental health conditions if not treated effectively. It’s not just about drugs. It’s about parenting and correct schooling and the right support from mental health services.
If the right support is not provided then as I have mentioned it can have disastrous consequences on a child’s mental health and wellbeing. And that’s what happened to us
As I mentioned, when she was 9 she was admitted to a children’s mental health hospital. Something no parent wants to see but in our hearts we knew it was the only way our daughter would get better. Driving away from the hospital after settling her was surreal. Jon was prepared for a full meltdown from me but there was nothing. There was relief that she was safe. There was relief that she was in a place where she would get help. There was relief that I was not going to be attacked that night by her. There was relief that Z was going to be safe and able to play.
There are very few of these hospitals around, and the one we were fortunate enough to get a bed in was in Kent. 60 miles away from our house. We were one of the lucky ones. There were some families from much further afield. Each week we drove over 400 miles a week visiting her and bringing her home for weekend visits. This went on for 7 months!! She received incredible support there. She received an education, medical treatment and that all important psychological input.
But you see this will only work if the support is provided when the child is discharged. And our, ahem, “wonderful” local authority that is Hertfordshire didn’t provide this. They were supposed to see her within 7 days of discharge. It was written into her discharge papers. But they never saw her.
Now what I haven’t mentioned is her diagnosis. Because she had become so “complicated” she was under the care of The Maudsley Hospital in South London. The Maudsley is the leading mental health hospital in the UK. Before this she had been under the care of Great Ormond Street. She was being pushed from pillar to post without one person actually listening to us. No-one actually took on board what we were saying as her parents – the people who knew her better than anyone. By now she was being diagnosed with everything but no-one was actually treating her (apart from drugs – she was on lots of drugs!) We’re on first name terms with our pharmacist. I think we should have shares in the pharmaceutical companies.
We were begging for help and no help was coming. We were saying we didn’t believe it was autism. We knew it wasn’t autism. We knew it was ADHD with what we believed to be PTSD due to the horrendous way she had been treated by SHARPS.
The stress and pressure we were under was immense. We were fighting everyone to get our daughter help. We were begging for support. We were chasing appointment after appointment. We were trying to fix this incredibly violent aggressive small child whilst caring for a younger son too.
So just when you think things couldn’t get any worse it did – we lost our house. We simply could not keep up with everything plus hold down full time jobs. We had to sell our lovely home to sort our finances out. Part of me still remains devastated that it got to that, part of me is relieved. Now that may sound strange. I mean who can be “relieved” at having to sell their home. Well the money that was left over when we sold the house was supposed to be put to a deposit for a new home in time but has actually been put to better use which I’ll come onto in a bit
When she was discharged from the residential unit she was doing so well. She was happy and a million time calmer than we’d ever seen her. It was made very clear that she should be given full psychological support upon discharge but hey, I’ve already said that never happened. Now the big problem was finding her a new school to go to. She was now in year 6 and the only school that the council said would accept her was a special needs school. We were very reluctant as they are mainly a school for autism (as mentioned autism is in major dispute). But given we had no choice, off we went to visit it.
A charming school built on an old roman site. Well, the building is charming but that’s as far as it goes. That first visit should have been the last time we went there but sadly it wasn’t to be. When we visited we found staff outside smoking with the students. Not what we wanted our 10 year old daughter exposed to. The main cohort of the school were 15 year old boys. Only 3 girls in the school who were all around 14 – 16 years old. K was 10! Not a single child her age. She was the youngest child in the school by about 3 years. Now don’t get me wrong, there were some great staff there who sometimes “got” her. But that’s the problem they didn’t “get” her all of the time. Insistent that she was autistic, that’s all the kept referring to. Now as we know she was showing signs of dyslexia. She finds reading incredibly distressing and struggles with any writing. She was supposed to be using a computer to do her work to make life easier, except the school didn’t even possess any.
So without the proper support at school and things being taken away from her as punishments and without the support from Hertfordshire mental health services she hit another crisis.
She was back to suicidal thoughts and attempts. She was climbing out of 3rd floor windows trying to jump, she was pulling knives on herself (and us!) she was tying things around her neck.
We had called the police, we had spent the night in hospital. What a joke that was. 24 hours in a hospital ward with a nurse watching over her as she was a suicide risk, only to be told that there was nothing they can do as we had been taken to a different hospital to the borough we lived in. however they would contact our local camhs for support. How Jon didn’t hit anyone I will never know. It wasn’t the hospitals fault – their hands were tied. They did call Hertfordshire for us.
We had also called Hertfordshire crisis line for urgent help. I think Jon tried them over 20 times in one day. I eventually spoke to someone who promised a mental health nurse would call us back immediately. Well that was over a year ago and we are still waiting for that call.
You will see as my blog goes on that my hatred for Hertfordshire is huge. Why do we stay in Herts? Because it’s a beautiful county, it has fabulous facilities, it’s where my friends are. But the support is fucking shit. They should be ashamed of themselves but they don’t give a crap. Now if it was just me and my experience I would put my hand up and say “oh well, we lucked out” but every single person who lives in Hertfordshire and has tried to access help has had the same experience. They have the worst reputation in the entire country. I actually have statistics from a survey that I commissioned to prove it.
A few years ago, at a time of feeling very lonely and isolated, I set up a Facebook support group for families of children with Special Educational Needs (SEN). It’s called “Its Not Just You” (I know, Its should have an apostrophe but too late to change it now) I have over 1400 members from around the country and some from outside the UK too. It’s the most fabulous group with an incredible bunch of people. We have made wonderful friendships, we have shared highs and shared lows, we have screamed when it’s bad and cheered when its good and we are able to share advice and suggestions. But one thing stands out the most, the one borough who gets slated more than any other is Hertfordshire.
In February 2016 I wrote an open letter and posted it on Facebook. It quickly went viral and I ended up being interviewed by Sky News, BBC News, The Independent, and The Daily Mirror. I was on BBC radio, LBC and much more too.
By October 2016 we realised that this “charming” school was having such a detrimental effect on her mental health that we pulled her out of the school. She spent 5 months at home being “babysat” by carers whilst we searched for a school suitable for her. Some of this was funded by the council but we had to fund a chunk of it out of our savings. She received absolutely no education during this time – not a single bit of support from the council. We spent months looking for the right school. But because she had this official diagnosis of autism they were the schools we were directed to. When we went to visit them we just knew they weren’t for her. She was not autistic. We were still trying to get the hospital to listen to us about helping with her ADHD and what we believed was ptsd.
A few paragraphs back I said that the money we had put aside to buy a new house has been put to better use. What on earth could be better than buying your own home – Well I’ll tell you… When we finally realised no-one was listening to us, when we realised K was being left to fall to pieces, when we realised that Hertfordshire Education Authority wanted her sent to a boarding school for autistic children, we went for a private second opinion with a leading Psychiatrist. At that first meeting we knew we had found someone who could help us. He immediately recognised the severity of the ADHD. At that first appointment K was literally unable to sit still and was moving from chair to chair. He recommended a new course of medication. When we asked the Maudsley about this medication they said they knew about it but couldn’t say why they hadn’t suggested it. He also saw that she should absolutely not be sent away from home.
At the same time we saw a private psychologist and therapist. She implemented a programme for challenging behaviour. She also said she needs to be at home and not sent to a boarding school.
The medication and the programme combined changed our lives. Within 4 weeks K was calmer. And within 6 months of the programme we were functioning like a normal family. K also started to receive therapy and things were better than they’d ever been.
But this all comes at a cost. We have to fund everything ourselves. And that’s where the money put to one side when we sold our house has been put to better use. We have to pay for all of her care privately because Hertfordshire just are too inept to do so. That makes me sad. Sad that this wonderful beautiful county can’t provide the mental health support needed to children.
Don’t get me wrong – we still have times that are hell and as my blog continues you will see these times in their rawness.
In February this year we found an amazing school specialising in kids like K. Kids who have had a really traumatic school experience. Since starting there she has made incredible progress.
She was still struggling with her reading and writing so we had her assessed for something called Irlens Syndrome. Irlens is a visual processing disorder that causes visual stress. It makes letters jump around on the page. It makes patterns blur. This can all be corrected by bespoke coloured lenses. So now K has a fabulous pair of pale green glasses and the first time she put them on she could see clearly and read. But guess what – it’s not available on the NHS. Yes, that’s right, that’s another thing we’ve had to pay for privately ourselves.
So what started out as my first blog and was only supposed to be a short intro has gone on for over 4300 words.
There is so much more to our story than this but I think you’d all get bored and switch off.
I really hope you come back for a second instalment and carry on my journey with me – who knows where we will end up.
It’s a bit nerve racking putting this all out here but hey, if I don’t do it then others won’t realise they aren’t on their own or that ADHD is real.
I have so many stories to tell you, Life with my family is never dull and I’m sure they’ll be much merriment along the way
Finally, I’ll leave you with this…. Why the blog name “Victorious Star”. Well today was a special day. Today we filmed our daughter’s speech that she will give at her Bat Mitzvah in a few weeks’ time. And in it she talks of her name and the meaning behind it. Translated from Hebrew, her English name means Victorious, and her Hebrew name means Star.
She is my Victorious Star