The Big Weekend

I’m posting this a few days late but as the saying goes… better late than never !

This is my happiest blog and you’ll soon see why:

OMG the weekend has arrived. K has gone away with her youth group for their annual winter camp.

To say I’m on edge is a complete and utter understatement which is something most SEN parents will relate to.

They will also relate to the fact that since her medical form was completed 3 weeks ago we’ve had to complete a new one as yet again her medication has been changed.

I’m hoping that K wont feature much in this blog – I mean I’m truly really hoping and praying she doesn’t feature in this at all.

I have dreamed of this day for a long time. All I’ve ever wanted is for her to fit in. For her to be with her own age group. To make friends and to have a great time. It’s hard for her – she goes to an SEN school because of behavioural and mental health issues associated with adhd. But she longs to be in mainstream school. Part of me longs for it too but as I’ve said before this just isn’t possible for her – she would never cope with the pressure or the busyness of a large secondary school. But she longs for the typical social life that goes with mainstream school. She longs for large friendships. She longs for a typical best friend that she can travel to and school with. She longs for everything “normal”.

So to help her form those friendships we’ve always encouraged out of school activities. Some activities have been short lived, some have lasted longer.

When I was her age I joined a national youth movement and had the best time ever. I went there for years and lived for the annual residential camps. I made friends from all over the country and to this day whenever we go out and I bump into someone I know, I guarantee K will say “where do you know that person from – don’t tell me brigade!” and she’s always right. I desperately want K to experience this sort of thing. So a few months ago we joined K to a similar youth movement. She took to it immediately. The first evening she went she walked in without a care in the world. Her anxiety must have been eating her up inside – she knew no-one. Yet she enjoyed that first evening and was made to feel so welcome. So when the opportunity of the weekend camp came up we jumped at the chance.

I’m not going to lie – some of it is selfish. I mean quite honestly the prospect of K being out of the house for 2 nights is heaven. I know that may sound heartless but we all need the break including her.

Because she has a complete anxiety ridden phobia of transport she refused to go on the pre-arranged coaches. But we didn’t want her to miss out so we took her there ourselves. This meant driving her 3 hours to get there but these are the sort of things SEN parents go to, to make sure they don’t miss out.  The journey was probably less than 3 hours but as Jon is currently nursing a kidney stone there were many pit stops needed !

We explained the coach journey is all part of the experience but she wasn’t budging and we weren’t going to push it too far with her but have said if she changes her mind and wants to come home on the coach then we work it out.

But now on to me – as I said I am very much on edge. Seriously I’m so glad I have gel nails done as if I was a nail biter I dread to think what condition my nails would be in by now.

This is my diary of her weekend away

Thursday 4th January

All clothes were ironed and put out ready to be packed. Let’s remember she’s only going for 2 nights. How much luggage can one child need??? Apparently a lot. First of all we tried bag a. Bag A was too small. Then we tried bag B. Bag B was too un-cool. Then we tried bag C. Bag C was just right.

Yes my 12 year old has morphed into goldilocks.

But whilst bag C was just right we also needed another bag for her toiletries/make up/stuffed toy and all the other shit a 12 year old girl needs with her.

Oh, but we’re not done yet. She also needed her bag of nosh.

Finally we’re packed

But not before I’ve had to put all her medication into her pill box and label everything clearly for her so she remembers what to take and when to take it. She’s actually pretty good at this stuff. Although I did go through it with her enough times and she said she’d set reminders on her phone.

She was so tired she went to bed early and exhausted. Except she woke up at 3 am – I was far from impressed and stomped about the house whilst I got her another tablet to help her sleep. Jon reminded me that she was probably so anxious and to relax a bit with her. I forget at times how bad her anxiety can be and although she is looking forward to her trip she must be beside herself with worry as she has never done anything like this before.

Friday 5th January

7:30 am – I leave for work and wake her up to say good bye. I remind her for the millionth time that we just want her to have an amazing fun weekend but if she’s really upset and hating it, it’s not a problem at all and she can call us to collect her (but to remember we are at least 2-3 hours away). The main thing is she has tried it. At this point I’m not sure who is more anxious – me or her !

9:00am – she has a quick meeting with her teachers at school to sort out targets and timetabling for the term

9:30am – Jon brings her to the office to say goodbye.

9:31am – I say goodbye give her a kiss, get given the “look” and told “whatever” and off she goes

She left for camp around 12pm and that’s when my Jewish mother worry kicks in. I say Jewish mother, because whilst I don’t see myself as a typical Jewish mum – I guess to some extent I am. Has she packed enough knickers, will she remember her meds, will the girls be nice to her, what if a boy is nice to her – I’m not having that ! The list is endless.

I try not to call Jon too much and wait for him to have got her onsite.

2:45pm They’ve arrived.  Obviously I need to know every detail. I manage to find out that they arrived at around the same time as the coaches. This is good – as hopefully she’ll feel part of it from the very beginning. I have visions of K standing on her own with Jon waiting. But nope –that didn’t happen. As soon as everyone got off the coaches a group of girls from Manchester went up to K and started talking to her and off she went to wait to be told where her room was.

I could cry

21:07 she hasn’t called yet. Part of me doesn’t want her to call. I want her to forget about us. I want her to be having such a good time that I don’t hear from her. But I want her to call really. I want her to say hi and let me know she’s happy. Will I relax? – Unlikely.  Oh well I guess I’ll have to take my mind off of it and go shopping to Brent Cross tomorrow instead

21:24 I messaged her the following: Hi “Hope you are ok and having a good time. I’m not going to drive you mad – I just wanted to check you took your meds”

22:22 nothing heard

By now I’m going mad – what if she’s not happy. What if she hasn’t got reception and can’t contact us. What did parents do before mobile phones right !!!

22:37 and she replies!

We have a short conversation that consists of one word answers. The same word “yeah”.  I find out that the girls are nice, she’s having a good time and she’s happy.

I get a few more messages up until around midnight. And then I relaxed and could go to bed happy knowing she was ok.

6th January

A whole nights un-interrupted sleep. No 3am messages from her like I usually get when she is in her room unable to sleep. No having to tip toe around the house in the morning so she didn’t get woken up too early.

I went to Brent Cross. I walked around without a care in the world. I was able to get what I wanted when I wanted. I didn’t have to worry about rushing home to make sure she wasn’t causing havoc with Z. It was the most relaxing 2 hours I’ve had for a long time. We still hadn’t heard from her so Jon messaged her to see if she was having a good time and to see if she wanted to come home on the coach.

We eventually got a reply – she’s having a really good time but won’t travel on the coach. Oh well, we’ll keep working on that for the future.

7th January

Jon has gone to get her from Kidderminster. He still nursing his Kidney stone but insisted on him going rather than me – seriously, my driving isn’t that bad!!

Anyway Jon got there and behaved whilst she said goodbye to her new friends and absolutely didn’t embarrass her. The staff  said she was brilliant the whole weekend

10 minutes later she was fast asleep in the car and remained asleep for the next 2 and half hours in the car.

Home unpacked and in bed with only 2.5mg of her melatonin (sleeping tablet) by 7:45pm

OMFG – she only bloody did it!

She’s even talking about the summer camp and admitted she really did want to get on the coach but just couldn’t bring herself to do it.

Proud, happy, relieved

I just wanted to say to anyone who is reading this and is struggling right now – I never thought this would be possible. I never thought she would go away independently. Its taken years of hard work and struggles. This doesn’t mean we’re ok now. We aren’t. We never will be. I know that sounds negative – it isn’t its just reality. ADHD doesn’t go away. Its here with her forever but this is jut one small step to enable to her to realise that anything is possible.

Keep going – our kids will be fine if we continue to fight for them

x

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When Does School Start Again?

There are 2 types of SEN parent.

Parent A: the “I LOVE THE HOLIDAYS” parent. This is the parent who knows how difficult school is for their child and how they will just be a calmer happier child when the pressure of school is removed.

Parent B: the “OH SHIT IT’S THE HOLIDAYS” parent. This is the parent who dreads the holidays because they know the lack of routine for their child is going to cause so many meltdowns that they will probably turn to alcohol by day 2.

I can’t make up my mind which parent I am.  You see on one hand I love the holidays, I have all these dreams of what the holidays are going to be like. I think happy Christmas thoughts. I think all will be fine and the 2 weeks off of school will be filled with laughter, happiness, playing in the snow, cosy nights in, and special family time. And then I become parent b! At this moment I am dreading the next few days – Jon back at work, both kids still off of school – how am I going to survive the next 3 days.

It’s the 1st January and I think I am definitely more parent B than A and it’s not because of the lack of routine. Routine doesn’t bother K, never has and never will. She’s quite happy if things are different on a daily basis, as long as she is pre warned and knows what’s going to happen. It’s just spending that amount of time trying to keep an adhd, hormonal pre-teen occupied is extremely hard work.

December 21st, my head was filled with happy holiday thoughts although over the past 2 weeks my reality has comprised of these sorts of phrases

“Mum I’m bored”

“Mum what are we doing today”

“Mummmmmmmm I’m hungry”

“Mum can we go shopping “ (FFS – its Christmas Day NO!)

Add the adhd to the mix and a 2 week Christmas holiday sure feels like it’s been 6 weeks.

It is for these reasons that I find myself asking “When does school start again”

Except that fills me with as much dread as the holidays now. I worry what will happen in the new term. You see medication still isn’t working properly. In fact at the beginning of the holidays we had such horrendous anger and aggression we had to work out what was causing it. Was it a side effect of one of her cocktail of drugs or do we just have to face the real possibility that K is just a very angry and aggressive child who is going to need a huge amount of psychological support? Actually I think it’s a mixture of the both.

People hate the thought of medication their child – I know I was one of them. However sometimes no matter what strategies you put in place you need the drugs. But they can be so problematic. These tablets aren’t like paracetamol – these are serious drugs that when you go and collect them from the pharmacist they are kept locked in a safe and have to be signed for differently.

As I mentioned above, we had such anger and aggression at the beginning of the holidays we began to realise this wasn’t normal and coincided with her taking one of her medications. As she wasn’t at school we experimented with her medication and stopped the one we thought was causing this extreme anger and within a few days of it being stopped the anger disappeared. We aren’t seeing the intensity anymore although we are seeing the vile hormonal mood swings (that’s fun!) We are also seeing anger that is related to the adhd. When her hyperactivity and impulsivity becomes too much she gets angry and can’t control herself. Whilst we are happy that the anger has subsided we are now dealing with all the usual adhd symptoms.

Boxing day was fun because although by now we had stopped the one medication we believed she was reacting to as she still had some of the side effects in her which meant at dinner we were met with a delightful outburst in front of everyone which resulted in her storming off shouting fuck off to everyone and a few other expletives. 

Mind you it wasn’t as bad as 3 nights before Christmas when the air in our house was so blue I think Roy Chubby Brown would have been shocked to his core.  We were getting ready to go to the theatre. She’d been perfect during the day and as soon as she got home she pushed the boundaries with me. And then she snapped. It was like Jekyll and Hyde. One minute she was fine then this eruption came from nowhere. And when that volcano erupts there is no stopping it. You just have to let its lava run until it turns cold.

It was horrendous, I stormed out the house and went for a drive to get away. I didn’t want to come back – I really didn’t. But despite K being on a ban, Z wasn’t so one of us had to take him to the theatre and there was no way in this world I was staying at home with K after what had happened. You may think that makes me sound cruel but you have no idea how horrific the meltdowns are. How hurtful the things she says are and how upset it makes me and how violent she can be. I’d had this evening planned for almost a year. It’s an annual outing for us and one that we had all looked forward to for a long time. So K had the option to either stay at home with Jon or calm herself down and when the ban was up we could all go out. She did calm down and we did go out but it left a nasty bitter taste in our mouths. We didn’t want to go but we have to – its part of the behaviour plan we follow. Once her consequence/punishment/ban is up we have to reset and carry on as normal. We left later than planned as we waited for her ban to be up and then we went. None of us were in the mood but brave faces were put on and off we went. And we had a great evening.

The funny thing about the evening is that as we sat down in our seats a very old friend of mine happened to be in the seats next to us. K sat next to my friend and the next day I get a message from her telling me what “a lovely young lady” K was and how she thoroughly enjoyed chatting to her. That meant the world to me as my friend had no idea the hell we had been through only a couple of hours earlier.

For some reason K is hypersensitive to medication. We don’t know why but she just is, this means that most medications we try either don’t work or she has side effects almost instantly. But this is where I am grateful for having a psychiatrist who is second to none. I know that I can send him an email and he will reply as soon as he can which is usually within 24 hours. He knows her. He knows how her mind works and he knows how to work with her.

And adding to the mix is Z, he’s becoming difficult and is copying K’s behaviour. He’s an extremely loving and gentle boy but has taken to door slamming and back chatting.

I wish I’d kept a diary of the holidays as I’m sure it’s not been that bad and that there’s been plenty of fun and laughter too, it’s just living with adhd is so consuming it feels bad all the time. It is so exhausting for us. We constantly have to work out what medication may be working and what one might not be. We have to plan things meticulously to avoid any potential problems. We have to make sure all eventualities are planned for and that we are always one step ahead of her – which given what a smart arse she is, isn’t always possible.

We have an interesting week ahead of us. K is going away on Friday with a youth group she’s a member of. 2 nights away from home (Never been done before!) I’m nervous for her. She has refused to go on the coach with everyone else (one of her anxieties) but we don’t want her to miss out (social interaction is so important for her – as is the peace and quiet Jon and I need !) So Jon will drive her there and pick her up on the Sunday. The youth group know about her issues and have been very accommodating – she also manages extremely well in social situations when we aren’t there (We are part of the problem that’s for sure)

I shall be sitting with my phone glued to my side for 48 hours whilst I anticipate the call for one of us to go and get her.

Watch this space – I’ll be back next week to update you all

Thanks for reading
x

A Poem for Jeremy Hunt

Childrens Mental Health is in a state and that we can’t deny
But Mr Hunt prefers to claim that staff numbers are quite high

You see Mr Hunt, I do believe that this is not quite the case
there is no care for patients whose heads are in a another place

You do not seem to acknowledge that children are deprived
the figures that you quote a lot seem to be contrived

It’s all very well quoting numbers but they really don’t mean a thing
when the professionals supposed to help end up just blaming

You recently had a small exchange with Ralf Little on Twitter
He seemed to knock your crappy tweets and left you somewhat bitter

An article recently published makes quite a wild claim
That Camhs will see kids within 4 weeks – well that’s the general aim

Except for this to happen, 4 years we’ll have to wait
I told you at the beginning that Camhs is in a state!!

You seem to be deluded that children are pain free
but that’s one thing you’ve got very wrong and that I guarantee

Anxiety, Depression,
Autism, ADHD and more
all of these are being ignored and Camhs keep closing the door

Children are suicidal, they are struggling every day
Doctors refer them on to Camhs, but Camhs just send them away

What’s a family supposed to do when they have to wait at least a year
Sometimes it’s even longer and they carry on living in fear

I’m not sure what world you are living in but I think it’s quite a fantasy
how many more children have to suffer – it really is a national tragedy

A few years back the budget announced 1.25bn pounds to Camhs
Except the money wasn’t ringfenced so it became quite the sham

You see CCG’s were allowed to use this money as they felt fit
which meant the money went to other places – this really is the pits

It’s no secret Camhs needed the money to provide the care that’s needed
Except in the autumn budget last week the cries went unheeded

My daughter had a violent meltdown the day before I wrote this rhyme
We got an amazing response from the police – but their job is fighting crime

I dedicate my spare time to trying to raise awareness
To ensure no other family has to suffer the same unfairness

We suffered for years and years, we got shoved from pillar to post
Not one person cared for us, the system is a joke

How bad does it have to get for a child to get the care they need
Well I can tell you we’ve been to hell and back and still no-one took heed

Years of fighting a broken system left us on the brink
We ended up losing our house – its hurts more than you can think

You have no idea how bad things are,  you are so out of touch
All parents wants is a system that cares, is that really too much

I want you to read my story and truly understand
how utterly broken Camhs is and how this needs a greater plan

You need to see how families are really being treated
Even when they do get seen, they are completely defeated

Things are said to families that truly are appalling
This system is beyond repair and really needs overhauling

You may think I’m exaggerating quite how bad things are
So I’d like to draw your attention to comments from near and far

These are parents desperate for help whose children have been deserted
by the one system supposed to support them – how tragic the money got diverted!!

Camhs needs to be renamed and my husband’s already done the job
From now on it shall be known as “Crap At Mental Health Support”

On Facebook I run a support group for families of special needs
Mr Hunt these are their comments – YOU absolutely HAVE to read:

  • Today I received a copy of a letter that CAMHS have sent to my GP, summarising the last 12 months of assessments that my son has had. There are so many glaring inconsistencies it’s actually laughable (except it isn’t). They have even got my son’s age and my name wrong!
  • Not only did CAMHS discharge my youngest against my will and the will of our GP have lost referral requested in July for my youngest and GP says it definitely went but they don’t keep confirmations from faxes!
  • We were pushed away and I was made out to be overprotective and we never get a diagnosis
  • My son’s primary school sent an urgent referral to Camhs as he was threatening to throw himself off the balcony at school – it took 16 months for an appointment and then after a few sessions, they discharged him as not having ADHD. We had to go privately to be told he has severe ADHD, ODD, ASD and DMDD
  • Were told we weren’t Camhs candidates as although he had voiced wishing he was dead he wasn’t physically harming himself!
  • Still waiting for a call back/appointment since end of 2016. I was told for sure he would be seen sometime in Jan 2017. Still waiting….
  • We saw CAMHS 2 days after I had withdrawn my son from mainstream school knowing he wasn’t coping and was really unwell. CAMHS report quotes “medium to high risk when unwell but with the stressors of mainstream school being removed “low risk”. What did that mean how did that help us? It didn’t – what help have they given since – simply none. A letter was sent to the paediatrician advising we all needed to meet to discuss his mental health but I wasn’t copied in on this so didn’t know about this proposed meeting. No help from PALMS because he is not defined “ASD” although I disagree and basically I need to get on with it because I am capable. So thanks – all of you for all of your help – not! I am simply a mum doing my best but unsure how or what I need to do – I don’t have experience in mental health but I’m thrown to the wolves because apparently I am capable. Well thanks for that – you’re a great help and meet totally the expectations I have heard about you!
  • Two words totally useless!
  • Assessed fairly quickly after 3 months. Still awaiting report from assessment 5 months on. We did receive a report, but not for our child
  • Discharged upon diagnosis of ASD. Literally the following session. Despite OCD, anxiety and general behaviour all being horrific. Being told my daughter was cured of OCD because she understood it so well – yes she could write a book on it but that doesn’t mean it’s under control.
  • We waited over a year from referral to receiving the ADHD questionnaire. We then had 2 or 3 appointments, got offered absolutely no treatment at all because the boy’s dad (who only has the boy at weekends) said he didn’t want him to have medication. They hadn’t even offered meds, and I only found out they’d discharged us after 6 months of calling and being unable to get hold of our care worker. Total waste of 2 years
  • (they)Told my 8 year old he was “weird” as he hates buttons. Offered me an anxiety course but never have me the dates until 6 months later when they wrote to say as we hadn’t been back for a visit there they were taking us off their books
  • 14 month waiting list for Hounslow Camhs.
  • 3 years for assessment as they said because he non-verbal they couldn’t work with him
  • After 8 years I have finally told Camhs where to stick their poxy service
  • That moment when you hit a new low so you call CAMHS to get some advice and extra support from the doctor and you become aware halfway through the conversation that they’re doing something else while you’re pouring your heart out and not actually listening to you.
  • So Camhs told doctor it’s a 21week wait for appointment to see the next doc get told that will hear soon so today received a letter and her initial appointment is in October. 10 months after initial referral from Camhs.
  • Sick of camhs and people not listening 
  • My son got nothing beyond an assessment from CAMHS. The referral to OT was declined by them because his problems were deemed to be behavioural, despite never having seen him – My 7 year old is suicidal. How do you do an assessment and decide that he is too high functioning to receive any mental health services? Since when is actively suicidal at age 7 high functioning? Did he have to walk in with a noose around his neck to get some help? If CAMHS will turn away an actively suicidal child with a documented history of depression then I don’t know who they will take care of.
  • I was told CAMHS by my school only deal with a very high level of need.
  • Not been seen for 11 months. Have gone from weekly sessions to nothing for almost a year
  • We had been seeing the same counsellor for 3 years, he was then transferred to a different area and we were without a counsellor for 5 months, even though he had said we were priority in his notes. I was the one that had to chase them for updates and had to fight to be seen by a new counsellor. We are now being assessed as though we were a completely new case which can’t be right
  • They met me once for an overview/ assessment of my son, then we had a follow up with some action points and suggestions for help – but they have had no contact, no return of calls and feel nothing has been done. It’s as if we have been forgotten about completely!
  • My daughter was suicidal at one point no therapy has ever been offered I’ve had to source it myself
  • Was told my child was too young and they couldn’t help further. Got referred to cdc (child development centre) where she was diagnosed with ADHD and Asperger syndrome at age 5. Every session was a play date to my daughter. No advice given just a lady watching her play and jump all over the furniture
  • Discharged my daughter after speaking with me at an appointment. They decided that my daughter’s needs were due to something else. Offered an appointment to meet my daughter then they cancelled it. CAMHS never met my daughter and discharged her without even meeting her.
  • Despite being referred twice by different people they still refuse to see my son
  • They told me to take my 7 year old to A&E if he did anything following my distressed call to them explaining he’d said he wanted to die (a number of times). They said ‘they’ (children with Asperger’s) don’t really mean it
  • I no longer expect any help beyond their initial referral for my son’s diagnosis of autism. I’ve actually no idea at all what they’re supposed to do! They only served to refer for diagnosis after a three and a half year wait to see them in the first place. PALMS are currently helping us. ADD-Vance is a charity and CAHMS just refer us all to them. It’s outrageous and beyond upsetting.
  • They discharged my daughter with severe OCD and health anxiety saying there was no more they could do for her. 8 different people saw my daughter in 5 years. Not one did anything to help. One even blamed me for smoking
  • I was sat in an office and told I wanted sympathy and was not interested in making myself better. I saw about 7 different counsellors over the course of 4 years and just gradually got worse.
  • Told me ‘we’re not fobbing you off but we think a different service would be better.’ The other service was PALMS, who then refused the referral as they felt CAMHS was the best service. Bounced back & forth. After threatening suicide and severe anxiety, 5 months school refusal and still no help. Shame on you.
  • I was told we needed play therapy but was unable to offer any sort of counselling I was made to feel that I had used too many services and should have referral to social services!
  • They basically said she doesn’t fit the criteria and nothing else has been offered. Been told I’d be referred to autism specialist and discharged from camhs with a letter with organisations who may be able to help and support us. No letter no help no contact no notification
  • It is was only when I asked they offered cbt and that was to go and read a massive book. Not exactly helpful when a child is in a distressed state. I feel this should be done through therapy groups and visually. I actually paid for this privately in the end
  • My daughter has tried to kill her self twice . Camhs suggest a councillor … the school waiting list is too long and the doctors don’t refer to a councillor any more apparently
  • NHS don’t accept a child can have early onset bipolar disorder and so had to see a private psychiatrist who uses the U.S. Diagnostic tool
  • The lady didn’t seem to want to talk to my son and discharged him saying he’s fine. My son has anxiety problems due to having autism spectrum disorder
  • My sister is facing a lot of issues in her life because her anxiety is getting in the way, and camhs have dismissed her as having behavioural problems and ignoring the fact she needs help. My sister is 10 years old and cant sleep at night as well as nlt been to school in 8 weeks!
  • It took too long to be seen by camhs, i waited 3 months, in the meantime I was 16 and extremely suicidal. But of course, unless i was literally holding a gun to my head I wasn’t taken seriously! In the end, my mum took me to A&E, and only then, did camhs finally give me an appointment!
  • Consultant paediatrician did the referral yet still refused, took 18 months to be told no
  • CAMHS were no help, saw a family social worker not even a therapist. No help For my daughter. Just patronising parenting advice. I have helped my daughter privately, educated myself. Private therapist and her school have been amazing but CAMHS were useless, unsympathetic and a waste of time.
  • CAHMS services really need to improve and help children and families who really need it. I know quite a few who could and should benefit from CAHMS, but every single one of them has been let down. It’s just crazy and something needs to be done to improve the system and get these people the help they so desperately need.
  • Psychologist left, stating my son needed ongoing support. New psychologist came took two-three months to hear from her, after chasing several times. Seen once discharged as apparently my son isn’t anxious just shy and attention seeking. Despite his diagnosis and other professionals stating otherwise
  • My son was in residential care with them for four months there was no after care given and while there he had an awful time the CAMHS lady we had was awful no idea how to respond to families.
  • I was told that because my son hadn’t yet caused any damage to either himself or others (even though he tried to harm himself I.e wanted to die’) and cos he was back on his meds and calm at the time of his appointment that they cannot help him and that there will no longer anymore appointments
  • Passed straight on to palms due to wishing to try behavioural strategies. Both people we saw at camhs were locums and whilst we knew they were very understaffed and services being reduced they did everything they could for us.
  • They refused to assess or help my daughter, who was in a psychotic nightmare. Then they discharged her saying she had no mental health problem. My daughter has Aspergers and Bipolar. Dealing with Hertsmere CAMHS was the most traumatic and abusive experience of our lives The CAMHS ‘psychiatrist’ said she would only carry out an assessment if my daughter had been seen in A&E during a meltdown, and that she had to be taken by ambulance. We complied as we were desperate, and could not see any other option. After this, the CAMHS ‘psychiatrist’ discharged my daughter again, claiming that the fact that she came out of her meltdown at hospital ‘proved’ she had no mental health problem.
  • My daughter was in the referral stage when she self-harmed initially. We called and ahead for an urgent appointment. It took 8 week to get a call back. Then we were told that someone would be in touch with an appointment. My 12 year daughter then attempted suicide and I called again. I was told that someone will be in touch. 6 months later Camhs got back in touch! By then we had funded a private psychiatrist and my daughter was an inpatient on a teen psychiatric ward following a second attempt on her life. This potentially could have been avoided if Camhs had supported us or had allowed us access to a psyc team.
  • They say they will offer support. But don’t. Very disappointed in this service. They are very unprofessional. I feel so sad and let down by the service they offered my son and won’t be using them again
  • First referral from school to CAMHS – Refused because they felt school had not put enough strategies into place (in fact school were totally out of their depth). Son’s OT were also upset by this and contacted Step 2 but got nowhere. We went to see a private Psychiatrist, referred by our GP, who was appalled that CAMHS had not seen ds and he wrote a strong letter to that effect. School referred for a second time with a copy of the letter and they finally assessed/saw ds. Sadly they just wanted to medicate him with Prozac, Phenergan etc. there was no-one to actually talk to him or work with him, appointments were regularly cancelled 24 hours before. He ended up on Prozac, feeling suicidal and medically signed off school by the CAMHS Psychiatrist for 7 months. He was 10 years old by this point.
  • I feel the consultant sees the child in such a short time, they cannot get the bigger picture. I have given my concerns about thinking my son also has Aspergers, problems socialising, obsessive behaviours, but it is pushed aside as I am told he has good eye contact
  • Was recommended that we should receive OT & anger management but we’re told that there were no therapists available & as we had received a diagnosis we should do our own research & were discharged!
  • System needs an overhaul as failing so many the way its running
  • I understand that there are lots of children with mental health issues, but every child is different, my child was screaming for help, and I was the only one listening.. We are seeing a psychologist with PALMS now, but that was only through pure persistence..
  • Having my child try and kill herself twice . They decided she had no mental health issues and that she could carry on with every day life.. since this appointment she has done it two more times
  • Initially they did not have the experience to see her ocd was in fact part of asd in girls. Now seeing a psychiatrist through camhs but a psychologist privately as they do not appear to have the training in giving psychological support for asd children.
  • Staff left and the therapy (with one parent) just stopped. 5 months after a psych evaluation we have heard nothing–until a phone message proposing a discharge as there had been no contact! (Getting through on the phone is impossible.) At great personal emotional cost, my 12 year old sat in a room and exposed to a complete stranger his suicidal thoughts. For taking this risk, he has received no result, not even the courtesy of explaining he was not suicidal enough to get help.
  • They discharged my son offering no help or support
  • Our daughter was in such distress that we took her to A&E. There was a 4 hour wait and she was getting more distressed waiting for someone to see her. She was scared and wanted to come home. We had no option but to discharge ourselves. We had no support from Camhs at all following a 7 month stay in a Tier 4 inpatient unit. Our L/A has 2 approaches – palms and camhs. The hospital said that it should not be palms that sees her as she has mental health issues and has to be seen by camhs. Our discharge papers said we would be given a camhs appointment within 7 days of discharge – this never happened. Palms decided they needed to do their own assessment on her (despite being in the highest level hospital in the country who did a 7 month assessment!) they only started working with her after we complained and this was 4 months after discharge. We said camhs still weren’t involved and no-one did anything. The support given by palms has been questionable too. The specialists who saw her resorted to bribery to try and convince her to take her medication. Another of their team told us her medication she was on would not be the reason behind the new suicidal thoughts – despite being told to look out for this from the Tier 4 unit. We removed her from the medication and the suicidal thoughts stopped.
  • No assessment given of my daughter. After one half hour session I was told she had acute anxiety but Camhs couldn’t treat her because she would just sit in sessions and cry
  • I have not felt supported. I have requested for the past 4 months for the psychiatrist to evaluate my daughter’s medication and I still have not received an appointment.
  • The people that we have worked with in CAMHS are very competent but the problem is they don’t have the time to help us. There is no other way to explain why we feel so neglected that they are trying to help lots of children that they don’t have enough time for us.
  • They did not help at all in fact my daughter deteriorated significantly during our time under them. It led to a complete breakdown in my family and she left home. Shocking service- no appropriate help or clue as to what was wrong with her. She still suffers today. The worst service I have ever used and quick to point blame at the parents
  • My 14 year old daughter tried to take an overdose. She was kept in hospital overnight. She was accessed by CAMHS the night she was in hospital and then again before she was discharged. I was then told that she wasn’t mentally ill enough for CAMHS. Trying to end your life is not considered an emergency for help and counselling. She was put on a waiting list for step 2.. We waited months. I am very disappointed and feel very let down.
  • It’s absolutely horrific how dismissive Camhs is and even when we did get to see someone after spending money on a private diagnosis, for over 5 years they didn’t listen to a word I said about my worries, promises were made each session, the last session I turned up without my child because there was no point in him being there, I pleaded with the doctor, a specialist went to view my son in his school, now after 5 years of no help is saying he is autistic and we should have an ADOS, I have been told that the ADOS waiting list is 1 year, my child is now about to hit puberty, I wonder where he is going to fit in in this world

 

When the good run ends

Sometimes you get lulled into a false sense of security

3 weekends ago was her bat mitzvah weekend. We’d spent months planning this. Enjoying the fact that she was actually able to have this day which we though a few months ago would never happen.

We expected a bad spell in the lead up – all the excitement and all the adrenalin flowing. On the Friday night before we had an almighty meltdown. The language was beautiful. I mean she had an array of words that was really special. But thankfully Jon was around and was able to control the situation.

But we had the most special and wonderful weekend. Her bat mitzvah was incredible. She did us proud. I mean she was beyond amazing. Everyone who was there couldn’t get over how grown up she was. How confident she was. How well behaved and more importantly how happy she was.

Even the next few days she was happy and calm. She had a good few days at school. But then bam, it hits you and it hits you hard. The reality of her life smacks you in the face.

Her adhd reared its ugly head again. Insanely hyperactive at school Not  helped by some sweets she had smuggled out of the house and eaten on the way to school. Sugar rush central!

We’d had some really interesting conversations. She had been so grown up and reflective. But we’ve had the complete extreme side of things too. On one occasion her brother had come home from school and she was uncontrollable. Couldn’t leave him alone and wound him up until all hell broke loose.

I can only explain it like a saucepan being boiled. The liquid inside is the adhd and the saucepan is K’s body. Inside the adhd is bubbling away then something happens and the lid blows and all that adhd comes out like a volcano.

Except what erupts is not bouncy hyperactivity. Its aggression and anger. Its violence. It’s screaming. Its hair pulling. It’s self-harming. It’s swearing – it’s unbearable. It was triggered because her behaviour was spiralling and she had received a warning which is part of a very strict behaviour programme we follow. If she doesn’t listen to the warning she gets a ban and that’s what triggered this eruption.

It’s hard to explain how I react. I have to ignore the behaviour and the violence which is hard. Actually scrap that its almost impossible. There are times when I have no choice but to restrain her. But we know that the behaviour plan works and we don’t engage with her when she is kicking off. It took a long time but it did work and she did calm down but I was left drained and emotional.

All the amazingness of the weekend gets wiped out in an instant and makes you feel sick. You’re left wondering why she hates you so much. Why is she so ungrateful? But the truth is she isn’t ungrateful and she loves us very much – she just has a funny way of showing it at times.

Then the lows come. You see when the meltdown is over she is drained. She feels like shit. She hates what has happened and instantly regrets it. But what can I say. I can’t tell her that it doesn’t matter – it does. I don’t deserve the attacks and she doesn’t deserve what’s happening to her. I have to be truthful.

The night of this particular meltdown she cried herself to sleep. She said she wanted her memory erased so she doesn’t remember what she’s done. I worry that if she carries on harbouring these feelings then her self-esteem will drop even further.

People often ask “what is a meltdown”. The truth is if you’ve ever experienced on you’ll know. It’s so much more than a tantrum. It’s intense beyond imagination. It only stops when the energy behind it burns out . For her it’s an out of body experience. She cannot control it and when it’s finished she has very little idea of what happened.

he’s struggling at school too. Her medication has not been working so we’ve been back to her wonderful psychiatrist. I genuinely don’t know where we would be without the infamous Dr G. He absolutely gets the situation and is doing everything he can to help us. We’ve found out that she has reacted to one of her medications. It could be what’s behind her current deterioration but to be honest we’ve given up second guessing and trying to work out causes. But medication is being changed as I type this and we will hopefully be back on track next week.

Quite honestly I’m getting a bit fed up of all of this now. K has created this character which really isn’t her. She likes to swear but hates hearing others swear. She thinks she’s tough but actually she is very vulnerable. But getting through to her is like hitting your head against a brick wall. She’s a smart kid and so caring but she is so sodding obstinate its shocking ( I blame Jon for her inheriting that trait) Surely it gets to a point where she realises she has to stop behaving the way she does as she is not doing herself any favours.

She punched a wall at school during a meltdown and ended up spending the evening in a&e for an x-ray. No broken bones – just bad bruising. Has she learnt her lesson? I doubt it

New meds have been started. Day 1 = excellent day at school but makes her stay awake so didn’t up going to bed until 1:30am. Day 2 = woke up too late to take new meds as they would end up keeping her awake even longer than the day before so we are having  a fun Saturday parenting a toddler like 12 year old!  On a plus note she did say when she did take the meds for school she felt calmer and could focus so much easier

Don’t laugh – without meds she really can be like a toddler. We had to the chemist this week to pick up her new meds and the 10 minutes I was in there went a little something like this:

Me: Put that down
Me: Stop picking everything up
Me: No, K, I am not buying you anything else today
Me: Yes, it is very cute but you don’t need it so put it back on the shelf
Me: Seriously, put it back
Me: Omg, you have to stop touching everything and picking everything up
Me: Ok enough now – put everything back.
Me to Chemist – See, THIS is why we need the medication!!! (he laughed)

So to escape the toddler like K today I am off to the cinema with a couple of friends for a giggle.

Her head teacher assures me (as someone who has seen this all before) that they do grow out of it.

I bloody hope so!

Its Not Just Me !

On my very first blog I wrote about how crap Camhs were. If you recall Jon had renamed Camhs as Crap At Mental Health Support.

Ok, yes there are some people who have had some good experiences but I can count them on my one hand.

I know there are some amazing professionals out there working for Camhs. (There are some really shit ones too when you see some of the comments below). But the system is broken. Completely and utterly broken. For years Governments have neglected the funding for children’s mental health services. For years NHS budgets have been cut further and further AND even when the current Government did allocate £1.25 BILLION to Camhs, the money wasn’t ring-fenced. Which meant that idiots at each NHS trust who control the purse strings for their own Boroughs/Counties were able to put the money into other services.

It is as simple as this – CAMHS NEEDS MONEY. CAMHS NEEDS TO HELP CHILDREN.  IF THIS DOES NOT HAPPEN THERE IS GOING TO BE A SERIOUS PROBLEM. CHILDREN ARE GOING TO COMMIT SUICIDE – THIS CAN NOT BE ALLOWED TO HAPPEN. CAMHS NEEDS TO BE OVERHAULED URGENTLY!

Now a funny thing happened this morning. I received a message from a friend telling me to listen to LBC radio as they had a dial in on the subject of children’s mental health. The programme came about as the result of a piece in the Guardian. Not being one to miss an opportunity I called in and was interviewed by Andrew Castle live on air. The call in featured many other parents all experiencing appalling service from their Camhs. The timing could not be better as I knew this blog was just about to be published.

This blog has a slightly different feel about it. It’s not about the highs and lows of my week/day/hour (the mood changes in our house very quickly!). Instead it’s honest, raw and real comments made by families who have told me exactly how they have been massively let down by the system supposed to support them.

What I want from this blog, is for these comments to be read and to be read by people in a position of responsibility. I need those people to really understand how appalling the system is and how badly families are being treated. I am literally begging every person who reads this blog to share it everywhere you can. Twitter, Facebook, email your friends. This has to be read.

What I don’t understand is how in 2017, in one of the most medically advanced countries in the world we just don’t invest in the mental health system.

If a child broke their leg they wouldn’t be discharged from hospital without it being put in a cast so why are children with broken mental health being discharged without being fixed or just as bad, not being seen at all.

I think one of the most shocking things I’ve heard this week was from a member of my support group. She had been calling and chasing Camhs all week. She needed help regarding her son’s medications. The psychologist who is leaving Camhs very soon, responded to the mother by saying “I can’t be bothered to deal with this so you win. I’ll increase his meds” – this is a truly appalling example of the attitude many families are being met with.

The following comments are from members of my support group:

  • Today I received a copy of a letter that CAMHS have sent to my GP, summarising the last 12 months of assessments that my son has had. There are so many glaring inconsistencies it’s actually laughable (except it isn’t). They have even got my son’s age and my name wrong!
  • Not only did CAMHS discharge my youngest against my will and the will of our GP have lost referral requested in July for my youngest and GP says it definitely went but they don’t keep confirmations from faxes!
  • We were pushed away and I was made out to be overprotective and we never get a diagnosis
  • My son’s primary school sent an urgent referral to Camhs as he was threatening to throw himself off the balcony at school – it took 16 months for an appointment and then after a few sessions, they discharged him as not having ADHD. We had to go privately to be told he has severe ADHD, ODD, ASD and DMDD
  • Were told we weren’t Camhs candidates as although he had voiced wishing he was dead he wasn’t physically harming himself!
  • Still waiting for a call back/appointment since end of 2016. I was told for sure he would be seen sometime in Jan 2017. Still waiting….
  • We saw CAMHS 2 days after I had withdrawn my son from mainstream school knowing he wasn’t coping and was really unwell. CAMHS report quotes “medium to high risk when unwell but with the stressors of mainstream school being removed “low risk”. What did that mean how did that help us? It didn’t – what help have they given since – simply none. A letter was sent to the paediatrician advising we all needed to meet to discuss his mental health but I wasn’t copied in on this so didn’t know about this proposed meeting. No help from PALMS because he is not defined “ASD” although I disagree and basically I need to get on with it because I am capable. So thanks – all of you for all of your help – not! I am simply a mum doing my best but unsure how or what I need to do – I don’t have experience in mental health but I’m thrown to the wolves because apparently I am capable. Well thanks for that – you’re a great help and meet totally the expectations I have heard about you!
  • Two words totally useless!
  • Assessed fairly quickly after 3 months. Still awaiting report from assessment 5 months on. We did receive a report, but not for our child
  • Discharged upon diagnosis of ASD. Literally the following session. Despite OCD, anxiety and general behaviour all being horrific. Being told my daughter was cured of OCD because she understood it so well – yes she could write a book on it but that doesn’t mean it’s under control.
  • We waited over a year from referral to receiving the ADHD questionnaire. We then had 2 or 3 appointments, got offered absolutely no treatment at all because the boy’s dad (who only has the boy at weekends) said he didn’t want him to have medication. They hadn’t even offered meds, and I only found out they’d discharged us after 6 months of calling and being unable to get hold of our care worker. Total waste of 2 years
  • (they)Told my 8 year old he was “weird” as he hates buttons. Offered me an anxiety course but never have me the dates until 6 months later when they wrote to say as we hadn’t been back for a visit there they were taking us off their books
  • 14 month waiting list for Hounslow Camhs.
  • 3 years for assessment as they said because he non-verbal they couldn’t work with him
  • After 8 years I have finally told Camhs where to stick their poxy service
  • That moment when you hit a new low so you call CAMHS to get some advice and extra support from the doctor and you become aware halfway through the conversation that they’re doing something else while you’re pouring your heart out and not actually listening to you.
  • So Camhs told doctor it’s a 21week wait for appointment to see the next doc get told that will hear soon so today received a letter and her initial appointment is in October. 10 months after initial referral from Camhs.
  • Sick of camhs and people not listening 

Now this is the bit that pisses me off and hurts the most. It hurts because I am a Hertfordshire family and I know first hand what a truly horrendous Local Authority they are. In fact last week it was confirmed that they are the 2nd worst in the entire country for rejecting referrals to Camhs.

These comments are only from families from Hertfordshire. They are responses to a survey I commissioned in 2016.

  • My son got nothing beyond an assessment from CAMHS. The referral to OT was declined by them because his problems were deemed to be behavioural, despite never having seen him – My 7 year old is suicidal. How do you do an assessment and decide that he is too high functioning to receive any mental health services? Since when is actively suicidal at age 7 high functioning? Did he have to walk in with a noose around his neck to get some help? If CAMHS will turn away an actively suicidal child with a documented history of depression then I don’t know who they will take care of.
  • I was told CAMHS by my school only deal with a very high level of need.
  • Not been seen for 11 months. Have gone from weekly sessions to nothing for almost a year
  • We had been seeing the same counsellor for 3 years, he was then transferred to a different area and we were without a counsellor for 5 months, even though he had said we were priority in his notes. I was the one that had to chase them for updates and had to fight to be seen by a new counsellor. We are now being assessed as though we were a completely new case which can’t be right
  • They met me once for an overview/ assessment of my son, then we had a follow up with some action points and suggestions for help – but they have had no contact, no return of calls and feel nothing has been done. It’s as if we have been forgotten about completely!
  • My daughter was suicidal at one point no therapy has ever been offered I’ve had to source it myself
  • Was told my child was too young and they couldn’t help further. Got referred to cdc (child development centre) where she was diagnosed with ADHD and Asperger syndrome at age 5. Every session was a play date to my daughter. No advice given just a lady watching her play and jump all over the furniture
  • Discharged my daughter after speaking with me at an appointment. They decided that my daughter’s needs were due to something else. Offered an appointment to meet my daughter then they cancelled it. CAMHS never met my daughter and discharged her without even meeting her.
  • Despite being referred twice by different people they still refuse to see my son
  • They told me to take my 7 year old to A&E if he did anything following my distressed call to them explaining he’d said he wanted to die (a number of times). They said ‘they’ (children with Asperger’s) don’t really mean it
  • I no longer expect any help beyond their initial referral for my son’s diagnosis of autism. I’ve actually no idea at all what they’re supposed to do! They only served to refer for diagnosis after a three and a half year wait to see them in the first place. PALMS are currently helping us. ADD-Vance is a charity and CAHMS just refer us all to them. It’s outrageous and beyond upsetting.
  • They discharged my daughter with severe OCD and health anxiety saying there was no more they could do for her. 8 different people saw my daughter in 5 years. Not one did anything to help. One even blamed me for smoking
  • I was sat in an office and told I wanted sympathy and was not interested in making myself better. I saw about 7 different counsellors over the course of 4 years and just gradually got worse.
  • Told me ‘we’re not fobbing you off but we think a different service would be better.’ The other service was PALMS, who then refused the referral as they felt CAMHS was the best service. Bounced back & forth. After threatening suicide and severe anxiety, 5 months school refusal and still no help. Shame on you.
  • I was told we needed play therapy but was unable to offer any sort of counselling I was made to feel that I had used too many services and should have referral to social services!
  • They basically said she doesn’t fit the criteria and nothing else has been offered. Been told I’d be referred to autism specialist and discharged from camhs with a letter with organisations who may be able to help and support us. No letter no help no contact no notification
  • It is was only when I asked they offered cbt and that was to go and read a massive book. Not exactly helpful when a child is in a distressed state. I feel this should be done through therapy groups and visually. I actually paid for this privately in the end
  • My daughter has tried to kill her self twice . Camhs suggest a councillor … the school waiting list is too long and the doctors don’t refer to a councillor any more apparently
  • NHS don’t accept a child can have early onset bipolar disorder and so had to see a private psychiatrist who uses the U.S. Diagnostic tool
  • The lady didn’t seem to want to talk to my son and discharged him saying he’s fine. My son has anxiety problems due to having autism spectrum disorder
  • My sister is facing a lot of issues in her life because her anxiety is getting in the way, and camhs have dismissed her as having behavioural problems and ignoring the fact she needs help. My sister is 10 years old and cant sleep at night as well as nlt been to school in 8 weeks!
  • It took too long to be seen by camhs, i waited 3 months, in the meantime I was 16 and extremely suicidal. But of course, unless i was literally holding a gun to my head I wasn’t taken seriously! In the end, my mum took me to A&E, and only then, did camhs finally give me an appointment!
  • Consultant paediatrician did the referral yet still refused, took 18 months to be told no
  • CAMHS were no help, saw a family social worker not even a therapist. No help For my daughter. Just patronising parenting advice. I have helped my daughter privately, educated myself. Private therapist and her school have been amazing but CAMHS were useless, unsympathetic and a waste of time.
  • CAHMS services really need to improve and help children and families who really need it. I know quite a few who could and should benefit from CAHMS, but every single one of them has been let down. It’s just crazy and something needs to be done to improve the system and get these people the help they so desperately need.
  • Psychologist left, stating my son needed ongoing support. New psychologist came took two-three months to hear from her, after chasing several times. Seen once discharged as apparently my son isn’t anxious just shy and attention seeking. Despite his diagnosis and other professionals stating otherwise
  • My son was in residential care with them for four months there was no after care given and while there he had an awful time the CAMHS lady we had was awful no idea how to respond to families.
  • I was told that because my son hadn’t yet caused any damage to either himself or others (even though he tried to harm himself I.e wanted to die’) and cos he was back on his meds and calm at the time of his appointment that they cannot help him and that there will no longer anymore appointments
  • Passed straight on to palms due to wishing to try behavioural strategies. Both people we saw at camhs were locums and whilst we knew they were very understaffed and services being reduced they did everything they could for us.
  • They refused to assess or help my daughter, who was in a psychotic nightmare. Then they discharged her saying she had no mental health problem. My daughter has Aspergers and Bipolar. Dealing with Hertsmere CAMHS was the most traumatic and abusive experience of our lives The CAMHS ‘psychiatrist’ said she would only carry out an assessment if my daughter had been seen in A&E during a meltdown, and that she had to be taken by ambulance. We complied as we were desperate, and could not see any other option. After this, the CAMHS ‘psychiatrist’ discharged my daughter again, claiming that the fact that she came out of her meltdown at hospital ‘proved’ she had no mental health problem.
  • My daughter was in the referral stage when she self-harmed initially. We called and ahead for an urgent appointment. It took 8 week to get a call back. Then we were told that someone would be in touch with an appointment. My 12 year daughter then attempted suicide and I called again. I was told that someone will be in touch. 6 months later Camhs got back in touch! By then we had funded a private psychiatrist and my daughter was an inpatient on a teen psychiatric ward following a second attempt on her life. This potentially could have been avoided if Camhs had supported us or had allowed us access to a psyc team.
  • They say they will offer support. But don’t. Very disappointed in this service. They are very unprofessional. I feel so sad and let down by the service they offered my son and won’t be using them again
  • First referral from school to CAMHS – Refused because they felt school had not put enough strategies into place (in fact school were totally out of their depth). Son’s OT were also upset by this and contacted Step 2 but got nowhere. We went to see a private Psychiatrist, referred by our GP, who was appalled that CAMHS had not seen ds and he wrote a strong letter to that effect. School referred for a second time with a copy of the letter and they finally assessed/saw ds. Sadly they just wanted to medicate him with Prozac, Phenergan etc. there was no-one to actually talk to him or work with him, appointments were regularly cancelled 24 hours before. He ended up on Prozac, feeling suicidal and medically signed off school by the CAMHS Psychiatrist for 7 months. He was 10 years old by this point.
  • I feel the consultant sees the child in such a short time, they cannot get the bigger picture. I have given my concerns about thinking my son also has Aspergers, problems socialising, obsessive behaviours, but it is pushed aside as I am told he has good eye contact
  • Was recommended that we should receive OT & anger management but we’re told that there were no therapists available & as we had received a diagnosis we should do our own research & were discharged!
  • System needs an overhaul as failing so many the way its running
  • I understand that there are lots of children with mental health issues, but every child is different, my child was screaming for help, and I was the only one listening.. We are seeing a psychologist with PALMS now, but that was only through pure persistence..
  • Having my child try and kill herself twice . They decided she had no mental health issues and that she could carry on with every day life.. since this appointment she has done it two more times
  • Initially they did not have the experience to see her ocd was in fact part of asd in girls. Now seeing a psychiatrist through camhs but a psychologist privately as they do not appear to have the training in giving psychological support for asd children.
  • Staff left and the therapy (with one parent) just stopped. 5 months after a psych evaluation we have heard nothing–until a phone message proposing a discharge as there had been no contact! (Getting through on the phone is impossible.) At great personal emotional cost, my 12 year old sat in a room and exposed to a complete stranger his suicidal thoughts. For taking this risk, he has received no result, not even the courtesy of explaining he was not suicidal enough to get help.
  • They discharged my son offering no help or support
  • Our daughter was in such distress that we took her to A&E. There was a 4 hour wait and she was getting more distressed waiting for someone to see her. She was scared and wanted to come home. We had no option but to discharge ourselves. We had no support from Camhs at all following a 7 month stay in a Tier 4 inpatient unit. Our L/A has 2 approaches – palms and camhs. The hospital said that it should not be palms that sees her as she has mental health issues and has to be seen by camhs. Our discharge papers said we would be given a camhs appointment within 7 days of discharge – this never happened. Palms decided they needed to do their own assessment on her (despite being in the highest level hospital in the country who did a 7 month assessment!) they only started working with her after we complained and this was 4 months after discharge. We said camhs still weren’t involved and no-one did anything. The support given by palms has been questionable too. The specialists who saw her resorted to bribery to try and convince her to take her medication. Another of their team told us her medication she was on would not be the reason behind the new suicidal thoughts – despite being told to look out for this from the Tier 4 unit. We removed her from the medication and the suicidal thoughts stopped.
  • No assessment given of my daughter. After one half hour session I was told she had acute anxiety but Camhs couldn’t treat her because she would just sit in sessions and cry
  • I have not felt supported. I have requested for the past 4 months for the psychiatrist to evaluate my daughter’s medication and I still have not received an appointment.
  • The people that we have worked with in CAMHS are very competent but the problem is they don’t have the time to help us. There is no other way to explain why we feel so neglected that they are trying to help lots of children that they don’t have enough time for us.
  • They did not help at all in fact my daughter deteriorated significantly during our time under them. It led to a complete breakdown in my family and she left home. Shocking service- no appropriate help or clue as to what was wrong with her. She still suffers today. The worst service I have ever used and quick to point blame at the parents
  • My 14 year old daughter to take an overdose. She was kept in hospital overnight. She was accessed by CAMHS the night she was in hospital and then again before she was discharged. I was then told that she wasn’t mentally ill enough for CAMHS. Trying to end your life is not considered an emergency for help and counselling. She was put on a waiting list for step 2.. We waited months. I am very disappointed and feel very let down.
  • It’s absolutely horrific how dismissive Camhs is and even when we did get to see someone after spending money on a private diagnosis, for over 5 years they didn’t listen to a word I said about my worries, promises were made each session, the last session I turned up without my child because there was no point in him being there, I pleaded with the doctor, a specialist went to view my son in his school, now after 5 years of no help is saying he is autistic and we should have an ADOS, I have been told that the ADOS waiting list is 1 year, my child is now about to hit puberty, I wonder where he is going to fit in in this world

I have so many more examples and whilst the above comments were from last year, I am constantly being told that nothing has changed and Camhs is just as bad as it ever was. This comment which was left sums it up perfectly

“ASD and ADHD are not mental health conditions. But they lead to mental health conditions when they are not adequately supported.  Please recognise that appropriate support when young will save lots of money later on as these individuals are more likely to lead productive and happy lives.  Cutting support is a false economy because it will cost much more money to support a person with established mental health issues through their lives.”

Thank you all for reading and supporting me by following my blogs – please share this one as widely as you can.

This blog is dedicated to all the members of Its Not Just You who have been with me through so much and more. A wonderful “family” – my INJY Family

Not Quite a Gremlin

The rules of keeping a Mogwai:

  • Don’t expose it to bright light
  • Don’t feed it after midnight
  • AND never get it wet

I’ve often wondered if those rules apply to keeping K. Sometimes she is the biggest Gremlin we know. The carnage she can cause is on that level. And then there are the times when she is as cute and innocent as Gizmo himself.

We had a bumpy weekend last week. On one hand she was amazing. She went out for the day with a friend on Saturday. Didn’t see her all day and she was great. Then there was Sunday. Sunday it was there bubbling away. Nothing horrendous but it was there simmering under the surface. All my energy was taken up in trying to stop that pot from boiling over. I managed for most of the day. In fact I even braved taking the two of them out for dinner as Jon was away on business.

Again, it was going ok. Except there was a man in the restaurant who was around 50 ish. He was loud. Even by K standards, he was loud. The whole restaurant were looking at him and even his family kept telling him to be quiet. But no, he decided to just get louder and louder.

For most families this would be annoying at the most. But for us it’s a trigger. It caused K so much stress she couldn’t cope. There were no other tables to move to and to be honest he was so bloody loud it wouldn’t have mattered where we would have sat.

Anyway, K and Z decided to wind each other up as they had been doing throughout the day. Poor Z got “studded” playing football and was feeling very sorry for himself. K doesn’t do sympathy and couldn’t really give a shit about him apart from telling him to “get over it”. Now heaven forbid she has an injury. I’ve lost count of the trips to a & e because she was convinced something was broken. In fact school once banned her from going to the medical room unless her head was hanging off.

So as the goading of each other continued, Z knocked a glass of coke all over the table, I shouted as quite frankly I’d had enough of both of them at that point. Z cried, K stood up screamed at the top of her voice, slammed her fist on the table and stormed off. Needless to say she came back to eat, decided she didn’t like the food and we paid and left.  But to be fair I got a “sorry mum” from her and when we got home all calm was restored.

And following a decent (ish) night’s sleep I woke feeling hopeful that the day was going to be a good one. Jon was coming home that night so all was good. By the way, when I say decent (ish) night’s sleep, that’s nothing to do with the 2 little people living in my house. That’s all me!! You see even as I approach 40 I can’t sleep when Jon’s away. The doors get checked a million times to make sure I’ve locked them and the lights stay on. Because at nearly 40 there are still monsters under my bed! Oh and by the way it would seem I am not alone in this irrational behaviour. Now I’m a bit partial to Facebook. Some joke with me and say that I’m on it all the time. The truth is it’s my escape. It’s where I can whittle away mindless hours and ignore reality. And it’s on a Facebook group with a whole bunch of likeminded mums who regularly hide themselves away in the loo that I realised that there’s a whole bunch of mums who are still afraid of the dark. So at this point I want to thank those “Loo” mums for keeping me sane in my moment of madness.

Anyway as always I digress – this was the plan for Monday morning:

  • Get up, showered and dressed
  • Get Z up and dressed for school
  • Wake up K so she sees me before I leave for work
  • Give Z breakfast
  • Wait for Z’s friend
  • Take Z and friend to school
  • Go to work
  • Stay at work

And this is what actually happened

  • Got up, showered and dressed
  • Got Z up and dressed
  • Woke up K so she saw me before I left for work
  • Gave Z breakfast
  • Z’s friend arrives
  • Took Z and friend to school
  • Got to work
  • Got a call from K at 9am. A completely different taxi driver again
  • K in full meltdown screaming down the phone at me crying and refusing to get in the taxi
  • Left a meeting I should have been in at 9:10 and drove a little bit faster than I probably should have to get home.
  • Whilst driving home, trying to keep it together, I phone the taxi company to bollock them AGAIN
  • Get home. Find K with string tied around her neck and a knife in her hand. Chairs thrown around the dining room
  • Calmed K down
  • Got her into my car and drove her to school
  • Left her school with her safely with her Key worker and drove back to work (still crying and now thoroughly drained)
  • Arrived back at work at 10 am and straight into another meeting which I really didn’t want to be in and sat there on the verge of my very own meltdown.
  • Spent the day feeling like absolutely drained and overwhelmed by everything.

Work was a struggle to be honest. All day all I wanted to do was to just curl up in a ball and cry all day. But as that wasn’t possible I just swore a lot instead.

I’m thinking of this being my life motto:

“Swearing, whilst vulgar, un-ladylike and unnecessary, is as satisfying as retail therapy”

I’m not out for sympathy, I’m really not. But on Monday all I wanted was a big fat massive hug and I couldn’t have one as Jon was somewhere across the skies of Europe heading towards Heathrow.

Never before have I watched the live arrivals so closely and counted down until he got home.

My hope was that the rest of the week was as good as Tuesday. Tuesday was a good day (except for a crazy manic ADHD fuelled hour where I just couldn’t calm her down).

One of K’s strongest characteristics is her unbelievably caring nature. I had a friends kids at the house on Tuesday and the little girl is only 5. K absolutely stepped up and looked after her the whole afternoon (prior to a crazy manic ADHD fuelled hour).

And it’s those moments where I see the Mogwai and not the Gremlin.

Tuesday K was Gizmo

Edited to say: Fuck!!  – she got another exclusion. Medication definitely not working. Her life is chaotic and she is all over the place. Unable to remain in control of her emotions. Being impulsive and hyperactive. Being verbally impulsive at school. Sent back to school from a farm they were visiting. Behaviour was so erratic she wasn’t safe there.

Thank goodness for a psychiatrist who is always there. Medication has already been adjusted and we have been back to our psychologist. Boundaries need to be reinforced and also there is a big issue over her emotional needs which is being addressed.

Turning the Corner

Jon and I have this thing where we say “we’ve turned the corner” every time we have a good spell.

The thing is our lives are more like a roundabout. We’ve had quite a good couple of weeks. K was calmer and not showing the signs of the anxiety that can cripple her. So we thought we had turned that infamous corner.

And then bam, that corner just keeps bending and bending until its 360 degrees and we’re back on the roundabout.

Tuesday was a bad day. Well actually it was a bad morning –the rest of the day turned out pretty good. Mornings are always hard. Because she goes to an SEN school she gets provided with a taxi. And there lies the problem. The taxi company are supposed to provide her with the same driver every day, except they don’t. They agreed to have a pool of 2 drivers most of the time. Except it isn’t and every day it’s a different driver. They also said they would provide us with a text message every morning when the driver is 5 minutes away so K can get herself ready and not stress that the taxi was either early or late. Except that’s not happened either.

You see K’s anxiety is at its worst in the morning. She can’t cope with not having a school uniform. Her friends have said she’s lucky but even she admits it’s too much for her. She can’t cope with choosing different clothes every day. She genuinely thinks she hasn’t got anything to wear. The truth is she’s got more clothes that Primark. And that in itself is a problem with ADHD – too much choice and the brain goes into overload and can’t cope.

Now you might ask, why don’t we take her to school. Unfortunately this isn’t possible logistically. I wish it was but it isn’t. Jon has to take Z to school so that I can start work earlier to allow me to be able to pick up K and Z from their schools.

We have tried and tried to get her to organise herself the night before. She had a time table on the back of her bedroom door that broke down her morning into 15 minute chunks. This was supposed to help her manage her time more effectively. We’ve tried to get her to choose her clothes the night before but in the morning she changes her mind and her clothes end up on the floor and everything pulled out and thrown all over the place. Her room is affectionately known as a “Floordrobe”

I tidy her room at least twice a day. She tidies her desk and her make up but all that chaos on her floor stresses her out even further and she doesn’t know where to begin. It’s difficult, tiring and stressful.

So I’ve said that Tuesday was a bad morning but it did turn into a better afternoon. We spoke about how we couldn’t have a repeat this morning and reminded her about choosing her clothes and getting organised.

Wednesday morning went well. Turned that corner again! She had an appointment with her psychologist this afternoon. What a waste of £130 that was. Jon took her but she was so tired (medication issues) that she fell asleep in the session.

However later in the afternoon I got a call from her head teacher. That dreaded call that makes you feel sick. Makes you feel sick in the bottom of your stomach. You know somethings not gone well. You want to dodge the call and pretend the day was really good but you can’t. You want to believe that she is making amazing progress and we really have turned that corner.

So I answered the phone. I had just finished a run in the gym. Z had a playdate and K was with Jon so I managed to fit in a 3k run after work which I really needed. Feeling exhausted but buzzing from running the furthest I’ve done I had to pick up that call – I couldn’t avoid it.

I wish I hadn’t answered it but I just couldn’t dodge it. My newly energised mood was quickly extinguished when I got told there had been an incident. A child from school had punched K. Unfortunately she didn’t put in place what she has learnt about controlling her emotions and walking away.  Instead she punched the child back in the face, hard. And for that she has been given a one day exclusion on Friday.

I wish she felt remorse and said she was sorry. But she doesn’t. She got hit first so she hit back harder. Happy isn’t the right word but part of me is proud she stands her ground and won’t be walked over but she just doesn’t understand the ramifications. I really hope this comes with maturity. We spoke about it in the evening and she just replied “but mum, if someone hit me in the street I’d have to defend myself”. Is it wrong of me to think that she does have a point?

I was really worried about today. She has a school trip to a lake. Lots of water based activities. She had the option of not going as it’s a religious festival. It’s not one we personally observe and I thought that it would be good for her to go on the trip. She has anxieties over boats – I thought this will be an ideal opportunity for her to try and get over that as her school is so specialised and nurturing they’ll be able to really help her.

Last night I was really worrying that I’d done the right thing by sending her. At 9:30pm she had a face like thunder and I could see that anxiety and nervousness building.

Her anxieties have always been the bane of her life. The list changes regularly but currently stand at:

Buses – because in the world according to K they are full of “dodgy people”
Boats – not a clue why
Separation
Unexpected noises (alarms)
New environments
Loud noises
Killer clowns (I get that one!)
Being on her own

Her anxieties peaked the other week when we found her hurting herself when it became too much. Luckily we noticed in time and got her straight to the therapist for more sessions. She hadn’t done too much – just scratching of her arms. She didn’t like the feeling of it and said she wanted to stop it which was such a relief.

But then she blows my mind. In her bid to feel and be normal she will happily go out with her friends to shopping centres. She won’t make her own way there (see the buses issue!) but she’ll spend hours with her friends walking around. She’ll take her brother to the high road to buy him an ice cream.  She is the most responsible and caring child I know.

Her therapist gave us some homework last session. To go on a bus one day for just one stop and arm ourselves with a notepad. We had to make a list of all the “dodgy” people we see. Life being life means we haven’t actually got around to it yet, but we will.

My heart does break for her – she is so desperate to be normal and to fit in. She wants to go to mainstream school but days like Wednesday make me realise this is a distant dream. She just wouldn’t cope. Well not yet anyway. But I am determined to get her there one day.

I often find myself wondering what if. What if her 1st school had been better – would she be in the state she’s in now. What if Camhs had supported her – would she be in the state she’s in now? What if traditional ADHD medications worked for her at a younger age – would she be even calmer and able to function in mainstream education? Who knows? All I know is that life with K is like living with the Tasmanian Devil. It’s not that she runs around in circles, it’s that life around her goes around like a whirlwind.

Well today I was pleasantly surprised. I picked her up from school after her trip and they told me she had the best day.

When we got home Jon had managed to get tickets to see the England v Slovenia game at Wembley tonight. I was banned from going with because according to Jon I am a “pain in the arse” when we all go to football matches together. Suits me, as I am at home with my computer, blogging away whilst sorting out a million photos for Jon to put on a video for K’s upcoming batmitzvah.

So just before they went out Jon and I came under attack. 2 children armed themselves with Nerf guns and pillows and the object of their fight – Us!!! And we loved it. We laughed and dodged the bullets and for that moment we were normal again.

Maybe, perhaps we have “Turned the corner”

I AM SAM

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.

  1. Carry on reading and see if I change your mind
  2. 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

Why blog?

Welcome to my blog.

I really hope you enjoy reading my musings. This is all about my life, my family and our journey with a child with ADHD.

Its about the journey from hell and about what we have overcome.

Its about our battle with a system that just doesn’t make sense

Its about my battle with faith

Actually its about anything and everything