Facebook Groups – is it ok to slag off a school publicly but anonymously: Discuss

So an interesting debate opened up this week. I am a member of a Facebook group solely for mums. It’s a group where pretty much anything goes. The mums talk about their sex lives, their relationships, their in-laws, their family arguments. No language is barred and the only thing that isn’t tolerated is abuse or bullying towards other members… Unless that is you want to slag off a school that did massive damage to your child

And a mum did exactly this opening up the question is it ok to lay into a school (without naming them) because there are members on the group who go to that school.

Now here is the thing. I know this mum. She happens to be a member of my support group. She pulled her son out of the same school my daughter was in. She suffered the same negligence and abuse that K did – she got out quicker than we did though and her son is absolutely thriving in his new school.

She posted a no holds barred post in this mums group. She absolutely slated the school and one particular teacher. But she did not name the school at all and neither did she name the teacher.

But one mum was upset at the post. She was very uncomfortable that the post was so strong and absolutely laid into one teacher.  She very respectfully explained that she was a mum at the school and didn’t like hearing the school being slagged off and didn’t like that the teacher wasn’t able to defend herself to the abusive nature of the post. Remember – no teacher was named. The only people who would know who was being talked about were other parents at that school who knew all about this as it was no secret.

Me being me couldn’t keep quiet so I joined in the debate. It was all done very respectfully but it got me thinking. Why should we be silenced and is it ok to use Facebook in this way. This is a group where bitching is 100% allowed. Why should us mums who have had the most horrific experience ever feel like we aren’t able to speak publically about what happened. Because some mums who are still at that school don’t want to acknowledge the systematic abuse of special needs children, children that were going to be an inconvenience, children who would bring their grades down, children that they didn’t want in the school?

Granted things have moved on, management has changed and from what I hear they are trying very hard. But is that enough for me? No it isn’t. I never got closure for what they did to K. I’ve never received compensation for what they did to K. And more worryingly is that this particular mum only left the school within the last 6 months.

So why should I keep quiet for the sake of current parents there?

Let’s not forget this is a school who locked my 8 year old daughter in a room. A room that had 1 window facing a playground and 1 door. A door that on the other side stood a teacher holding K’s tights which they had removed from her in case she strangled herself with them. A room that I had to walk past to collect Z while she stood there screaming to be let out whilst teachers said “don’t worry, ignore her”.

This was a school who called me in because they couldn’t cope with her so pinned her to the ground whilst I was made to force a tablet into her mouth. You may say why did you let them force you but the truth is unless you are in the same situation and are fighting to get the best support for your child, fighting for appointments with camhs who are ignoring your calls, ignoring cries for help then in all honesty, you’re lucky if you know what day of the week it is

This was a school whose head teacher sent Jon abusive emails telling him that we were not good parents.

This was a school robbed my daughter of a childhood that should have been full of happy memories. This is a school who robbed my daughter of experiencing everything that all those “happy to be at that school” mums will experience. Things like Prom’s, leavers disco’s, GCSE results, school trips abroad. This may sound silly but in a couple of years all I’m going to be seeing is Facebook full of mums saying “so proud of xyz – they got 200 A*”  As I write this I can’t even imagine K taking a single GCSE (I know she will and my pride at whatever she achieves will be more than any online post will ever reflect)

But my point is, why do I have to keep quiet to protect those families that are still there.

Let me make this very clear, there are 2 things I hold fully responsible for destroying my daughter.

  • Her fucking shitty useless soul destroying, abusive, negligent, incompetent, vile 1st primary school (bar a couple of awesome teachers who she adored and who adored her – which funnily enough was in year 1 where we had no issues at all)
  • Camhs (In case you’d missed it in other blogs I absolutely detest Camhs and will continue to spend as much time as I can campaigning for reform until someone pays attention to me!)

My words may seem strong but they don’t even scratch the surface to explain how much damage that school did. To this day K cannot be in a room with the door shut. Her anxiety cripples her. She cannot function without a multitude of medications every day. What 12 year old should have to suffer this.

She longs to be like everyone else. She longs to be going to parties with friends, she longs to have a social life, she longs to go to a mainstream school. As I’ve said before I’m under no illusions as to how difficult she can be but had that school nurtured her, had that school called in the right support, had that school not been so abusive to her then perhaps she wouldn’t have been robbed of all the things she longs for.

I am sorry if it makes the current parents of that school feel uncomfortable but surely I and the other parents who suffered the same as me (and there are many !!!) have the same rights to shout about that school as parents who want to praise it.

I do understand where this mum was coming from. I really do understand that her feelings were because the teacher that was at the heart of the post was not able to defend herself. But the suggestion that colleagues of her and parents of children at that school are uncomfortable with public posts just doesn’t sit fairly with me

So my question is, should parents of children who have been bullied, abused and neglected by this school be allowed to use Facebook groups as a platform to vent or should we keep quiet so that we end up fading into the darkness and the school carry on like nothing ever happened and no-one is made to feel uncomfortable.

Maybe I need to set up a new “secret” Facebook group for families of this school – maybe that will give us the closure we need.

But in the meantime, if there are any lawyers reading this that really want to help some of us then do get in touch !

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A recipe for a perfect holiday

Ingredients

Sun
Sea
Swimming Pool
Sand
Awesome hotel
Amazing food
Perfect Children

Method
Mix all ingredients and bake for 14 nights

Sounds great doesn’t it?

Well my Instagram feed will certainly have made our 2 week holiday look like that but the reality was far from that

Now, don’t get me wrong – we had a great time but it was challenging to say the least.

Let me backtrack a minute. We hadn’t been on holiday for 2 years. The last holiday was also very challenging – but K was in a bad place then. We didn’t realise at the time but she was just heading into her second crisis so it was not great. But 2 years on she is in a far better place right?

We work hard. We have stressful jobs and unbelievably stressful lives. We need a holiday but we can’t really afford it. All our money goes on K’s medical bills (which must be over £15,000 now! – Have I mentioned how much I fucking hate camhs and Hertfordshire council because of this)

When I see friends Facebook posts and Instagram posts of their perfect family holidays I do get pangs of jealousy and I hate it – jealousy is an ugly trait but I just can’t help it. I get even more jealous when I see my friends on a “kids free break”. Now don’t get me wrong, I love my kids more than anything in the world but a break from them in once a while was be great. We’ve been married for nearly 17 years and parents for nearly 13 years. The last time we had a child free break was over 12 years ago!!!

Anyway, as usual I’ve digressed. So a few months ago we decided we had to have a holiday. We just could not survive if we didn’t get away from the daily stresses that has become our daily lives.

We can’t go away in the summer months for a couple of reasons. One is down to Jon’s work and the other is quite honestly we’re just not sure K would cope with wherever we went being in peak season. Even thinking about an overcrowded busy airport is too much for her to cope with. Plus on top of that it’s just way too expensive. I think this is every parent’s nightmare – holidays abroad in July and August are at least double the cost of other times. We were lucky and got permission from both the kids’ schools to take an extra week before half term.

We researched where to go. We spent ages looking at what we wanted and what we needed and what we could actually afford.

  • Short flight. Besides having a hyperactive, anxiety ridden adhd’er to contend with, there was also my fear of flying. 2 – 4 hours maximum flight time!
  • Activity filled hotel with loads going on all the time (have I mentioned the adhd!)
  • Fabulous swimming pool
  • Kids clubs and Teenage club
  • Water park/slides
  • Alcohol!!!!!

 

4 years ago we stayed in a First Choice Holiday Village and it was brilliant. So we decided to go to the Holiday Village in Ibiza as it ticked all the boxes.

Our hell holiday of 2 years ago left me with so much dread I was very apprehensive. Despite looking forward to this much needed break I did not want a repeat of then. Surely this time wasn’t going to be as bad as then?

The months before were spent planning, prepping and shopping (Holy crap kids grow a lot!!) New clothes, new toiletries ( I love toiletries, especially holiday toiletries – who doesn’t?)

Even before we went we had pre-holiday sulks. Madam is that at age where she hates her clothes. An awkward age where she wants to wear clothes for a skinny 16 year old girls but she isn’t skinny and she is still growing. Developing a shape, doesn’t quite have a waist yet but isn’t 10 years old either. She’s very conscious of her figure and is worried she is fat. She wants to wear grown up pretty bikinis but they’re either not appropriate or she just doesn’t suit them yet.

Now this was the first problem of many. Everything she tried on during pre holiday shop led to the same meltdown “I hate it” or “It makes me look fat” or “OMG Im so fat” – no matter of re-assurance worked.

Everytime we went shopping the same thing happened – I’m actually surprised that there are any doors left on their hinges in New Look the amount of times she slammed them.

So whoever invented internet shopping – I love you. You saved my life. However Holister – you nearly ruined it. Omg I’ve never been into such an awful shop. Your changing rooms are too small. Your queues to the changing rooms are too long. Your shop is too dark. Your music is too loud. People pushing and elbowing each other. It was sensory overload to the max !

The next problem we had is a physical one. K has a really bad foot. She has a condition called Friebergs Disease – it’s to do with growth plates but basically at the moment her foot is swollen and she is in immense pain. It’s as if her foot is broken but it isn’t. When we went away she had a special wedge shoe to wear and can’t even get her shoes on. So cue more meltdowns over her footwear for holiday!

So the holiday was fast approaching and the excitement was building. My anxiety and apprehension was quickly growing at an alarming rate but all seemed good. I desperately wanted this to be perfect.

The big day arrives and our cases were packed. Meltdown 1 of the holiday was averted as we gave K her own suitcase so she didn’t have to share with her brother.

We arrived at Gatwick Airport and it was fairly quiet. We had arranged for special assistance which effectively involves K wearing a lanyard around the airport to help her avoid queues and busy places. We only really needed this at check in as security was very quiet.

Flight was called and panic attack number 1 hits her as we’re waiting to step onto the plane. Jon calms her but then the 2nd panic attack happens before we take off. She was hysterical and tears were flowing freely but when we were up in the air she settled quickly and in no time we had landed in Ibiza.

We had a plan – the plan was for me and K to go straight to the coach and Jon to get the cases. This worked. We got to the coach and sat on the front 2 rows which helped her anxiety – well for 10 minutes because as soon as other people arrived to sit down she had meltdown 1. She has massive anxiety over so many things but one thing in particular is transport – planes trains and automobiles (sounds like a great title for a film – perhaps Steve martin could be involved in it 😉 )

Arrive at the hotel and reeeeelax.

Ha ! – As if

About 3 days in we had meltdown from hell. I mean really from hell. We sort of expected it as it does take her a few days to adjust to her new surroundings. Mount K had erupted.

Now, whilst Mount K was bubbling away Z had been equally challenging. He didn’t eat for the first 2 days – he struggles with food. He doesn’t eat anything but pasta. It’s difficult. He has anxiety too and needs to see a psychologist. We are doing this – at more expense as we have to pay for that privately too. Thank goodness for a well stocked supermarket where we could get him a jar of Nutella.

Now when Mount K erupted I reacted terribly. But boy was I pissed off. I hated what she was doing and hated how she was behaving and how she seemed so ungrateful for the holiday we had worked so hard for.

The holiday cost a lot of money and she seemed intent on spoiling it.

It seemed like every day we had toddler tantrums except they were from a nearly 13 year old. We had daily behaviour that was so hard. 10 days in and it was just too much. The meltdown was loud and public. I can’t even begin to tell you what happened. The truth is I wouldn’t even know where to start. All I know is it was so bad Jon tried to book early flights home but insurance wouldn’t have covered it and it would have cost us over £500. So we had no choice but to grin and bear it and make the most of the rest of the holiday.

Besides the behaviour we had such issues with her anxiety. And that upsets me. I hate how it cripples her. I hate how it takes over her body and controls her so much. I hate the pain it must cause her. I hate how she hates it and can’t do anything about it. One day we tried to get the bus to the town but she froze and broke down. She just couldn’t do it – and I don’t know why. I wish I did. I wish I could understand it. I wish it could wave a wand and make it go away.

Luckily we hired a car for a day so were able to get out and see some of the island.

I think the hardest thing in all of this is hindsight. After the really horrendous meltdown that led to the nearly early departure from Ibiza, I started to think back over the past 10 days. I started to try and piece together what had happened to make it so hard. I quickly realised there were triggers. I realised that the pain in her foot was so intense that she couldn’t cope with it. She couldn’t convey her emotions to us easily and it came out in her behaviour and meltdowns. Then there’s the hormone issues. We are having massive issues each month and we know its hormone related and are actually seeing a paediatric endocrinologist for this – but don’t worry I’ll explain more about this complete saga in another blog.

I’m so upset with myself for not recognising what was going on. I’m so upset that we didn’t have the perfect family holiday – I so wanted it to be and it wasn’t.

Once we’d figured out the triggers we actually had a good end to the holiday. And in between the bad times we had fun. We really did. I just hope the bad times haven’t spoilt the kids memories of the holidays. I hope they remember the good times we had. I hope they remember the jumping in the pool, the going down the water slides, the evening entertainment, the walks along the beach, the rep who K had a secret crush on, the quizzes we played (and lost), the competition the kids won and were called up on stage for, the trip to the market, the bullseye K hit in archery, the Ariel adventure me and Z did (and crapped ourselves whilst doing), the water walkers, splash bingo, inflatable jet skis and of course the lizards we saw every day.

We’ve been home a week and I am genuinely exhausted. Back to chasing appointment after appointment. Knocking myself out at work, running around after the kids and genuinely trying to cope on a day to day basis.

But my biggest exhaustion comes from putting on a brave face and having the same conversation with everyone.

A conversation that goes a bit like this

Them: “Hi Sam, wow you look tanned. Did you have an amazing time”

Me: “Yes, it was lovely thank you”

Them: “Did the kids have a great time”

Me: “They loved it – really enjoyed it”

So much like my Instagram posts, my responses are a lie too. I can’t say “no it was fucking shit and we wanted to come home early but couldn’t”

Please don’t get me wrong – I really don’t want to sound ungrateful. I don’t want to sound unappreciative but I realised that it doesn’t matter if you leave the country, your shit travels with you.

 

He’s not a number – He’s my hero #49737

I don’t do sentimental. I don’t do public displays of affection. Neither of us do – it’s just not us.

Instead I laugh at his ridiculous sense of humour. His sick childlike immaturity that has me in hysterics so much of the time.

In fact as I write this he show’s me a post from his new favourite Facebook group – a group for fellow marathon runners. The post was titled “Show me your last supper” – followed were numerous photos carb fuelled dinners. Nope – Jon posts a picture of Jesus and the disciples sitting at “The Last Supper”. And yes – I laughed a lot.

Anyway as I was saying, we don’t do sentimental claptrap but TODAY I change the rules.

My husband is my hero – he is bloody awesome and I don’t know how many ways I can say it.

I think I would fall apart if it wasn’t for him. He literally holds us together and is the only one physically capable to deal with K when she is in meltdown.

But this is a big week for him. Its beyond big actually – its bloody ginormous

You see in May 2017 he decided having watched the London Marathon on TV as he does every year, that he was going to run the 2018 Virgin London Marathon.

Now, im not going to lie – he wasn’t exactly a runner. In fact he was an overweight couch potato (his words not mine!) The man I married many years ago was much slimmer and fitter but after nearly 17 years of wedded bliss (ha ha !!!) the waist line had expanded somewhat and that svelte martial art instructor was a fair few stone heavier.

There are many personality traits that Jon has. Some are a real pain in the arse to be honest but occasionally those nightmare ones actually work in his favour. And by this I mean being strong willed, determined and stubborn. Once he’s set his mind to something there is no deterring him.

So he started training. He downloaded the Couch to 5k app on 1st May 2017 and his marathon journey began. It wasn’t long before he’d smashed that and the running bug had bitten him.

He entered the marathon ballot hoping to get a space but sadly that wasn’t the case. By now it was September and he was well into his running. A moment of disappointment was not going to set him back – instead he started looking at all the charity places he could run for and then it hit him.

A small community mental health charity that is very close to our hearts had spaces. But the thing was he didn’t want to run just for them – he wanted to raise money for K’s school too. The school who are helping to transform her and get her the education she deserves

And so it came to be that he would run for Jami (Jewish Association for Mental Illness) and The Southover Partnership

As if he didn’t have enough on his plate the challenge had begun – and boy has it been a challenge. But it’s a challenge he has taken and smashed.

He’s run in the rain, the ice, the snow, the minus temperatures, the wind and tomorrow he runs in the sun – but hopefully not too much sun !

His running number is 49737. Mo Farah’s number is 13. Jon assures me he will be “just a bit” behind Sir Mo !

I don’t care where he ends up or what time he finishes. He’s beyond awesome for even attempting this.

As I said – he’s my hero and we couldn’t be any prouder of him.

Have a fabulous day Jon – we love you more than you know (Even when your adhd’er is telling you to fuck off)

xxx

Dear Will.I.Am – Perhaps I judged too quickly

One thing I love is social media. I love Facebook, I love Twitter, I love Instagram. Im not so keen on Snapchat – can’t quite get my head around it and I think K would be mortified if I decided to chat to her on that !!

Social media gives me a voice. It gives me a platform to be gobby. It gives me a platform to air my (sometimes very opinionated) views. It gives me a platform to campaign and bring awareness to all things I feel passionately about, namely children’s mental health and adhd

This week I was tagged in a post on Facebook that my friend had read where Will.I.Am was reported to have made a comment about giving adhd medication to kids is down to lazy parenting and lazy teaching. I read this very quick part of the article and was incensed.

Who is HE to tell the world that giving meds to kids is lazy? I was rather miffed to say the least. So what did I do about this? Well of course I did the one thing I know how to do – I took to Twitter.

Now I didn’t have a lot of space to air my views in their entirety – which is probably a good thing. But my tweet read as follows:

Dear @iamwill Re your comments on #adhd & “lazy parenting”.Yes there are strategies to help adhd kids but sometimes medication is vital.I AM NOT a lazy parent & will fight for everything my daughter deserves.Your comments are v upsetting Pls read my blog

What I did not expect in a million years is what followed next – a reply from the man himself

My comments weren’t meant to disrespect anyone…they were to point how patient my mom and entire family was of me and my hyper active energy…both physically and mentally…and creativity was my calming…I’m happy my mom gave me art and not pills…

I was then engaged in various twitter threads with other users. Some were very supportive of my comments, others very support of Will.i.Am

I watched my blog stats jump and saw my very first blog I wrote being read all over the world again – it’s a great feeling and like I said this is why I love social media. My voice was being heard.

However I also heard from a friend whose 17 year old son read the article after she showed him my comments. She was so taken aback by the communication she was having with her boy on an emotional level and told me how eye opening it was.  Her son told her that he loved his article and really helped his mum see things from a sufferer’s perspective rather than a struggling parents. He said he takes the pills because it’s what he has to do to get through the day but he doesn’t like it. He worries about them masking who he really is and how does he know what he is truly capable of achieving. He was in complete awe of Will.i.Am and admired his openness and honesty.

We’ve tried Ritalin – It’s horrible. A truly awful medication that turned my cheeky, quirky, funny, wild and hilarious (But bloody exhausting) child into a zombie. But she is on medication – a new non-stimulant. She is still funny and cheeky. She is still crazy (and still bloody exhausting) but the medication helps keep her on track. Without it, no matter what we try she would not cope. It’s just the way her adhd manifests itself. And I think that’s my main point. Not every child is the same.  Some children can have their energy channelled into something that transforms them. Some children need the medication.

A good thing about the UK is how slow we are and reserved about prescribing medication. We are extremely cautious about medicating over here. But we are also pretty crap at giving any kind of therapeutic support or helping give kids with adhd do something that will get them to reach their potential.

K was denied many opportunities despite everything that Jon and I did. Her school destroyed her – they didn’t “get” adhd and the detrimental effect it had on her mental health can not be underestimated. Only now that she has the care of an amazing psychiatrist, non-stimulant medication (that does not turn her into a zombie) and a very specialised school, is she starting to get to enjoy experiences that “normal” kids do.

Her adhd is crippling at times and I long for that “one” thing that will transform her. I wish schools were more geared up to allowing kids with adhd to thrive – to focus on creative subjects and see how its not all about getting straight A’s

I  decided to do some real digging and research. I read his article in its full glory. I have a new found fondness for Will.i.am. I do understand what he was saying and perhaps I took it slightly out of context.

I was amazed by the amount of things he has done to support kids – to ensure those without opportunities reach their potential.

When we first explained to K that she had adhd we took to the internet to find celebrities she could aspire to. There were many out there but none seemed to be open about it.

Thank you for being so open about your battle with adhd and thank you for helping bring awareness to the issue. Thank you for making me read more about you and what you do.

Finally, Will.i.Am – If you’ve read this then thank you again. And if you fancy starting a UK foundation to promote adhd over here and kicking schools’ backsides into gear then it would be most welcome !!!

For the Mum’s AND the Dads

As its Mother’s Day I wanted to write a very short blog about mums.

Whilst I think Mother’s Day is a wonderful idea I also think it’s a crock of shit.

A commercialised stupid nonsense dreamt up by card companies to flog some cards and make a pretty penny.

Having said that the thought of a cuddles and kisses from my little ones and a bouquet of flowers is quite nice as is a lie in.

But let’s face it – that lasts for all of 5 mins and in my case not at all as Jon is out on a 20 mile run preparing for the London Marathon in a few weeks’ time, so no lie in for me. But I did get my cards a day early when my mum and dad came over for lunch on Saturday.

Every year Jon quips the same joke that at least he’s saved £30 on a bunch of flowers for his mum as she passed away several years ago. I’ve got used to his sick sense of humour and find him mildly amusing at times. The thing is he didn’t need to spend money on his mum one day a year to show her how much he loved her. His mum raised 3 boys – and real handfuls they were too – Jon particularly! She was an incredible woman. She was beautiful, elegant, charming, funny and no-nonsense. She made the best chicken soup and schnitzels. There was always food cooking in the house and everyone was made to feel welcome. She did crazy things like buying 2 cauliflower because they were so cheap and on special offer. When pointed out that no-one in the house eats cauliflower she replied “I know but they were too cheap not to buy – I’ll give them away” Friday nights were always spent around the table as a family. She longed for grandchildren and was blessed with 7 before she passed away and adored every single one of them and spoilt them with all the love in the world. Cancer robbed her of meeting her 8th grandchild who is named in her memory. Cancer’s a real bastard!

But this is my point about Mother’s Day – it sucks. I mean whilst I am a mum and I have my mum with me, Jon doesn’t and all Mother’s Day does is remind us of all those mum’s no longer with us.

I have a very close friend who lost his wife a few years back (again to cancer – told you it was a bastard!). When his wife died they had a son who was only a few years old at the time. Their son is now one of Z’s besties. I can’t imagine what Mother’s Day does to them. He’s surrounded by this commercialised non-sense and constantly reminded of the mum he lost. Now I guess there are some that would say this I am being stupid and over thinking this and they should celebrate his mum’s memory. They may well do this, I don’t know, but when you’re surrounded by restaurants telling you to take your mum for lunch or special tea offers for Mother’s Day, I can’t help thinking it just sucks.

And another thing – as mum’s we don’t do what we do for recognition on one day. We do it because we are mums, because we love our children unconditionally – even when the put us through hell. Even when K attacks me and has a violent meltdown and tries to hurt herself, I still love her no matter what. I always will. I would walk to the end of the earth for her and not bat an eyelid. It’s what makes me a mum. Every day is Mother’s Day. And everything I’ve said so far is exactly the same for Father’s Day. All those children who have lost their fathers, whose mums have to fill the space of dads too.  Now this bit may piss a few mums off but here goes…. I bet when Father’s Day comes around there are a stack of mums who for whatever reason find themselves without a man in their life, start saying “but what about us mums who do the jobs of dads too”. And rightly so – BUT you just don’t hear dads saying on Mother’s Day “but what about us dads, who do the jobs of mums too”.

And another thing – what about all those women out there who long to be a mum. All those women who would be the most incredible mums in the world but who will never get those Mothers Day’s cards or those mum’s who once did get a Mother’s Day card but tragically don’t get one anymore

My point is that do we need a day to “celebrate” everything we do as mums? As I said, yes it is nice to get a card and a cuddle but it really is just commercialised non-sense.

So there is my rant on Mothers Day.

And here is my sentimental claptrap…..

My mum is the most awesome mum in the world. Awesome because she puts up with my dad and has done for over 50 years. Awesome because she does so much for everyone else and never thinks twice about stopping everything to help someone in need. Awesome for giving me everything I ever needed (Except cooking skills – I learnt that from my late mother in law) – sorry mum but it’s no secret you can’t cook for toffee. Awesome for putting up with my brother and me fighting all the time when we were younger – and I mean really fighting. Awesome for giving me childhood memories that will stay with me for ever. Awesome for raising me up to be the woman and the mum I am today.

Despite having her own health battles at the moment she remains awesome and always will – I love you mum.

This blog is for all the mums on Mother’s Day and all the dads who are filling the void of mums no longer around – We miss you Iris

Every day is Mother’s Day

Every day is Father’s Day

x

Time Flies

I’ve realised I hadn’t blogged for a while and to be honest I didn’t think I had anything to write about. But the reality is I have.

For us it just feels like it’s the same shit going on just a different day. The roundabout that is our life is continuing and the past week has been particularly challenging. We’ve had daily meltdowns that have been particularly aggressive (both verbally and physically). It seems her medication isn’t as effective at the moment so may need tweaking again (story of our lives). I’m not too stressed about it at the moment as we have an appointment with her psychiatrist in just over a week.

Not sure what has happened because up until then things haven’t been all that bad. For now K is doing well at school. Except …… She managed to sneak out of school with a friend and go for a walk. She got told off as she isn’t allowed off site without a teacher. She promised never to do it again

But forgetting that it’s all been ok. Except…….. A few days later that promise got broken. She managed to sneak out again, except this time it was more serious. She went to a park, went on a zip wire and proceeded to fall off (well fell with the help of her friend pushing her). She face planted the floor and knocked herself out. Luckily a teacher was passing and dealt with it all. We didn’t tell her off – her punishment was being made to sit in A&E with no phone battery for 4 and half hours. The only positive of this situation was the fact that the sore head and scratches stopped her moaning about her broken toe from the previous week

But that to one side it’s all been fairly quiet. Except…….for a few violent meltdowns but these seem to be connected to certain times of the month and hormone surge, so on top of everything else I am now keeping a diary to see the pattern.

But apart from that it’s all been not that bad. Except…….. for the constant moaning that her computer has broken (its broken because she treats her computer like a piece of rubbish and throws it about the room)

Seriously though, it has been ok.

Half term went well which is a huge relief. She went to gymnastics camp for three days which she loved and then one day she went to Brent Cross with her friend for 4 and a half hours. Honestly who can spend 4 and half hours in Brent Cross – apparently teenage girls can! What a lovely peaceful day I had that day

But as I was thinking of what on earth to write this time I distracted myself by flicking through the Timehop App on my phone. I was so surprised by some of the daily reminders.

The very first reminder was from 1 year ago:

“Wishing my gorgeous special girl the best of luck on her first day at her new school. Not sure who is more anxious, me or her!”

This was followed by a reminder of a post Jon had tagged me in:

“Very few people can realise the importance of this photo. First day at a new school. Fingers crossed!!”

I have so much to say about this I don’t know where to begin. Exactly a year ago K started her wonderful new school. Prior to this she had been out of school for 5 months. She spent every day with 2 carers who literally babysat her. They took her out to different activities every day. It cost us a fortune. They tried to do some educational activities but they weren’t teachers. We received no educational support at all during that time. She was miserable and lonely.

Then we found her current school. We didn’t know how long it would last but we were desperate and hopeful. This school was (and still is!) our last resort. The Council wanted to send K to a boarding school for Autistic children. Yet again they weren’t listening to us when we told them she wasn’t autistic and she needed a school that could manage her ADHD. This was around the time we started with our new psychiatrist who also told us that K should not be sent to a boarding school. This was exactly what our psychologist was telling us too. And given that at the time these were the only people who had done anything positive for K’s mental health, medication and behaviour – we listened to their advice. Her school were convinced they could meet her needs and would be able to help.

When she was offered a place we were very apprehensive. Things still weren’t (aren’t!) perfect at home but she was already a lot better than she had been. She started her new school and we haven’t looked back. We still play it by ear – even a year on. We still take it half term by half term. But we are so thrilled with how far she has come. Before she started she had developed a complete fear of even holding a pen. She just couldn’t do it. Yet now she is more confident and her work has progressed amazingly. Her school just get adhd. They just get K J

As I continued flicking through Timehop I stumbled across some tweets I sent out.

It was 2 years ago that I wrote my open letter to David Cameron who at the time was Prime Minister.

It’s a letter that went viral and ended up seeing me being interviewed by BBC News, Sky News, and The Independent. It’s a letter and a story that was featured on LBC and BBC Home Counties Radio. It’s a letter that introduced me to amazing people and opportunities. It’s a letter that prompted me to commission my own survey on how bad Camhs is which ended up being featured in The Sunday Mirror. It’s a letter that completely kick started my campaigning to do my bit to improve children’s mental health services. It’s a letter that has led to a rollercoaster couple of years that I wouldn’t change for the world. Well that’s a little bit of a fib because actually if I could change K’s medical needs and take all of that away from her I bloody would in an instant which would mean I never would have written this letter…… Which I NEVER got a response to.

Here is “that” letter

xx

An Open letter to the Prime Minister

Dear Prime Minister

I write this letter as a way of bringing much needed attention to the dreadful services available for children with mental health issues.

I am writing this letter out of sheer desperation. Our family is being destroyed by mental health issues and there is absolutely no support from Camhs. The specialist service supposed to be helping us.

Our daughter is unwell. Yet no-one from our local authority has helped. The NHS Camhs System is broken and needs fixing now!

I need people to really truly understand how appalling the system is. How children are being failed daily. How Local Authorities (and in particular the Local Authority I live in) MUST be held accountable for their failings.

Failings which have resulted in my daughter, at 9 years old, being admitted to residential children’s mental health hospital for 7 months.

Failings which meant when we called Camhs following the first of our daughters suicide attempts we were told “There is no-one here to help. Can you call back in a weeks’ time”.
Failings which have meant that when we called the 24 hour emergency help line we were told to call when our daughter was in severe crisis they took 2 hours to call us back following 14 attempts to call them.

The whole system is broken. When our daughter was first referred to camhs, it took 18 weeks to get an appointment. Then when we did finally get an appointment we were discharged after 3 sessions with the recommendation to read a book!

As our daughters mental health deteriorated we had to be re-referred back to camhs. This took 18 weeks AGAIN as they refused to see us without going through the whole process again.

When we were eventually seen by Camhs they simply wanted to pump our daughter full of drugs. Drugs that have serious side effects. No-one did and no-one has spent any time talking to our daughter or offering any of the therapies supposed to be available.

Our daughter spent 7 months in hospital because she was allowed to deteriorate so significantly. We would visit her once a week and she would come home at weekends. We would drive around 400 miles a week visiting and bringing her home and taking her back again. It cost the Local Authority thousands to fund her place. When she was discharged it was clearly stated by the hospital that she must have on-going support from Camhs. Guess what – it’s now 7 months she was discharged and not one person from Camhs has been in touch.

When she was discharged from hospital she was in a much better place. She had received specialist schooling. She had received medical intervention. She had received psychological intervention. There was a plan in place. That plan included moving forward with schooling and where she could attend this coming September for year 7. But now because of the lack of support from Camhs she is unravelling in front of us and the plan is falling apart.

I sit here writing this letter unsure of what’s happening next. We are now facing the prospect of our 10 year old daughter being re-admitted to the hospital because she needs help.

The system for children’s mental health is in crisis. Our children are in crisis. In the Budget in March 2015 you announced that £1.25 Billion was to be put into Camhs. This was something I was very pleased to hear. However I would like to know where that money is actually going? Is it being given to Local Authorities to do what they want with it? Are they just putting in place more executives to come up with strategies, because I can tell you it is definitely not being put into the actual care services that our children need.

But it goes deeper than that. It needs to be addressed at schools too. My daughter was seriously neglected at her first primary school. They had no understanding of special needs. Their solution was to lock her in a small room on her own. To remove her tights and socks in case she strangled herself. To leave her screaming and crying. She was 8 years old.

I have many many more examples of the incompetence from our Local Authority. I won’t name them publically, however it is commonly known by other professionals who have had to deal with them as the worst Local Authority in the Country. The pity we are met with when we tell people what Local Authority we live in is extremely disheartening and I’m sure something they would not be proud of!

Struggling as we were and with no-one to turn to, I set up my own support group. With over 900 members we share our frustrations together. One thing comes up time and time again and that is that wherever they are their local Camhs are diabolical and are not helping them.

People say we should complain to our MP. We have done this – it has not served any purpose and are still waiting to hear back from part of our complaint dating back to October 2015.

Last week we saw HRH the Duchess of Cambridge launch Children’s Mental Health Week. She is quoted as saying “A child’s mental health is just as important as their physical health and deserves the same quality of support. No one would feel embarrassed about seeking help for a child if they broke their arm – and we really should be equally ready to support a child coping with emotional difficulties”

I liken it to an open wound. You wouldn’t send a child home from hospital with an open wound that was bleeding profusely. Well my daughter is an open wound and she is bleeding.

The other day my daughter wrote this:
“Life is hard for me mum. I just want to go and live life. I wake up in the morning and say today will be fun but it never is. Please help me”

Our children are broken
She is begging for help.
We are begging for help
No-one is helping.

Yours faithfully
a very desperate and frustrated family”

 

 

 

 

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

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!