Category: CAHMS


Hi folks..
I know its been awhile… busy busy as ever…
Our story is a twisty turny thing that seems to have a life of its own… at the end of my last post we had given up on Access to Work doing any more than helping with transport costs. We where still waiting to here from the DWP about PIP this was in March we had been waiting since September…
We where also waiting to find out if J was going to be made redundant… all on top of waiting for our sons SEN assesments three yrs and counting…
my fibro… J’s cancer  and looking after our son with SPD…
So now in the middle of August where are we and whats going on…

Well at the begining of April J was told he would be made redundant but would have work to the end of June… all the time working in a job that required him to be standing on his leg and in pain…(I have some choice words id like to say to them, they basicaly tortured him and set his recovery back possibly perminanely for eight months then kicked him out… grrrr)… At the tail end of April they told J he wouldnt be working through till june and he left the company at the end of the month… his redundancy package was all over the place and he was not paid when he was told he would be plunging us in to further debt… however temporary… at the begining of May he got the first half of his redundancy and we where able to sort most of our over due payments, paid and caught up on things we had got behind on when he had been off sick after the surgery.

At the begining of May J saw his consultant who thought he may have to have more surgery the prostetic knee joint seems to have malfunctioned very rare apparently… to be honest we are running out of rare things that can happen… (touch wood) we have to wait now to find out what, when, and if he has to have more surgery…

Towards the end of May J got a letter from the DWP apologising for the delay in his PIP assesment decision…not the letter we wanted after nearly nine months…

A couple of weeks later we had the decision through… low rate care and low mobility both of which would have been high rate if hed been assesed when he applied… but not to put a dampener on it… the backdated pay helped pull us out of a pit and has helped take the weight off of us trying to get through our driving tests… as J can no longer cycle… or walk very far… and neither can I…

So here we are in the middle of August J has had all his redundancy and is free off the company…
We are no further forward with our son’s assesments nothing has been done in the last few months… all his refferals to the social pathway, computer specialist and child mental health team have not materialised yet nor have we had the final report from the sensory pathway…

J has applied for several jobs some of which put him through to the final rounds but he heard no more after disclosing his medical history… (this makes me so angry he just wants a job any job he can do)…this has been getting him down and by way of trying to cheer him up I went in to a local new age shop and asked if they would stock prints of his work if I could convince him they wanted them… they loved them and asked me to tell him to get some to them asap… you can see his work here. So that’s one possible outlet or alternative work option.
And im still trying to keep it all together… the garden needs doing the bathroom needs decorating and im all out of spoons…

At the end of July I passed my driving test yay and J spent some of his precious redundancy getting some prints done at a fabulous printers called Monkey Puzzle Art Printers on the north coast of Cornwall, lovely supportive people who loved J work and helped me to convince him he can make money at this…

J is now in the process of setting up a blog and websites FB stuff as well as producing works he’s hoping to sell at some point…

Now for the bad news, J has had to put his job searching on hold because at the beginning of September he has to go back in to hospital to have two further big ops… The first will involve the Drs removing all of J prosthetic bone implants and prosthetic knee… Because it’s not working…They will implant a spacer and antibiotic cement to keep his lower leg attached to his upper leg for six weeks while they blast his body with an intense course of antibiotics to try to kill the MMSA bone infection he got during his first surgery… Then he will go back in and have new bone implants and prosthetic knee joint put back in… They have to be new to eradicate the infection… They need to get rid of the infection not only so J doesn’t die but also because it’s causing bone necrosis at the prosthetic join which is causing further problems with his prosthetic… He is at time of writing still cancer free so we hang on to that…

So job hustings on hold as we all hold our breath and preparing for the roller coaster ride to start all over again, this will reduce his ability 100% and we’ve just learned he no longer qualifies for ESA as my earnings and Working tax credit just scrapes over the 7,000 a yr limit… any more good news?

In the mean time we are trying to have as much family time as possible just I case 😦 and finishing the decorating and the garden as well as helping my mum decorate her hall… Sigh oh and I was diagnosed with ME as well as Fibro… If the gods are listening I’m still trying to hold it all together some help would be appreciated and I don’t need any double edged blade learning lessons about being careful what I wish for… We just wanna get through and still be a family surviving the onslaught on the poor and working classes by this government like we don’t have enough worries…

Take care everyone… Dxxx

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A few months ago Debbie was kind enough to post up a blog piece for me about my Son and his mental health issues. How difficult it was, how guilty and alone I often felt. In particular how I yearned for glimpses of my funny, loving sensitive boy.

 

Things move on as they do, I’m not sure where the turning point came or what shifted really Perhaps its was the conversation at Christmas with me saying “I’m sorry – I cant change it but I hear you and I’m sorry”

 

I no longer push and badger, my approach now is to greet him in what ever mood he greets me with. If it’s a good day we enjoy our time, sometimes I get rudeness, sometimes he cant cope it’s not like he has cast off Mental illness but I don’t yearn for the boy he was. I am accepting the man he is becoming.

 

Just recently he has begun to show signs that he may be ready to engage in life, he is a little less angry. Maybe a little less scared, he has begun to lose some weight – I wish he’d contemplate more showers though.

 

I wondered what had changed things – I try not to look beyond the I’m glad to see it too much. But today was a revelation of sorts.

 

I can barely hope but there is a little tiny part of me that has noticed a green shoot perhaps. He rang me today, I wont go into details but suffice to say he was a little embarrassed to have to talk to his mum.

 

It told me a few things slightly bittersweet, but my boy was finally growing into a man and where he would ordinarily talk to his mate or have built up experience of dating his lost years struggling with his MH have left him with an experience gap.

 

I was touched he rang me, and even more touched he wanted to do things right. Of course as parents all want our children to be ok – but perhaps when they have so obviously struggled we want it more, we take nothing for granted. I cannot of course lay any hope or expectation on the young woman he so wants to impress.

But if I had one wish, its that he might begin to build some shattered confidence, one thing might lead to another and he realises he is more than his label..

 

I remember so many of you said don’t feel guilty you did the best you can. So today’s little update is simply a thank you – I have tried to reach a place where I accept him for all he is, MH issues and all.

 

 

Today I have a guest blog post from a friend who wants to remain anonymous simply to protect those around her… This post is a harrowing account of a mother trying to help her child with mental health issues and how the system is failing both the parents and the young  kids who are trying to make sence of their lives with the added complication of mental health issues.

I’m sure I’m not alone in asking that question, especially as a parent of a teen with mental health issues, who reached crisis point at 14. Who went from a reasonably confident, happy young man on the cusp of an exciting future with a good friendship group, girlfriends and a future. To one that was ill kept, frightened, angry and irrational.

There were warning signs of course, easy when you look back, we even tried to get help 12 months before the crisis hit – to be dismissed as he will grow out of it and there is a 12 month wait for CAHMS (Child and adolescent mental health services) so we went away..

Only a parent who has witnessed their child unravel at the seams, can appreciate the powerlessness and desperation to Do Something to help them and yet Where to turn?

I wont bore you with the details of abuse, physical violence, threats, door slamming as they once again leave to god knows where and will they return or will this be the time the police come to tell you your child have been, arrested, killed, admitted to A&E.

The constant tension of do I push and insist on rules and boundaries or accept they are ill and not just an angry teen…the people telling you it’s just attention seeking behaviours and the self harm is deliberate to prove a point, or the time he forced me out of his room so angry he punched a door and once again we had to go to A&E – those conflicted feelings… But

Where To Turn?

The sleepless night, the fear and worry impacting your own health, a sense of powerlessness, locked in a battle to get him help, to fight with school as he refuses to attend… No one ever did explain how you get a 6-foot; well-built angry teen to school…I’d like to see a welfare officer try.  But Where to Turn?

School?

Many promises, all broken, he was dismissed as a drug user who was just being difficult and didn’t want to try – a member of the awkward club, intelligent but unwilling was never in trouble so down the list… Out of sight out of mind

GPs?

Endless visits, endless brush offs he’s too young to be depressed, it’s a long wait for CAHMS, he isn’t really that bad just try to go out more, sleep better, get a routine…

Where to turn?

Then crisis hit the dreaded phone call – that even as I write this brings a lump to my throat… A friend had found him walking along the street… Virtually catatonic… Then finally a small breakthrough a GP who was actually listening and acted.

She got on the phone thinking it would be an easy referral – boy was she wrong after an hour of the run around she sent us home. Each bit of the system said oh we can’t see him not for weeks and weeks, lists are full, not our type of kid… In effect not our problem.

But she didn’t give in, round and round and eventually she got an emergency appointment in 48 hours… Unheard of but we were grateful. Well I was don’t think teen cared…

We entered the world of CAHMS – nice enough all lovely pleasantry but an angry mentally ill teen who didn’t want to be there, didn’t want to engage in fact didn’t really want to be anywhere… Was never going to be easy. I tried, I begged, I cried and he played with Lego!!

Well that’s not strictly true – at first he tried, was relieved to be heard and listened too we both thought we had got the help he needed. He was prescribed Prozac…  hmmm lets just say the aggressive angry teen become ever more so.

In Yr 10 he struggled on – was not there more than he was… By Easter he pretty much left and never went back. Yr 11 beckoned – he lasted till week 2, when he walked out never to return – school did not honour its promise – as far as they were concerned a room on his own with all the work he’d missed and no support was enough!!!

I cannot truly put into words the fear, isolation and horror of being left alone to cope – no real help, no strategies, no support for me just an ever-increasing crisis… But you see now under Cameron’s “trouble families criteria” we would be one – none school attendance, benefit reliance, council flat, mother with a disability – except we never got on anyone list or radar…

Just left to muddle along, our attendance at CAHMS was erratic, sometimes his dad would go, and sometimes he would go alone sometime he didn’t… School desperately tried to bamboozle me into home educating him… I clung on to one thing… NO I wouldn’t… He was ill they had to offer more… Finally in year 11, 6 weeks before his exams he got a home tutor… With help from his psych nurse – we prevailed the one tiny bright spot in our life at that point.

He had done some GCSE work intermittently in yr 10 on the rare occasions he went – he’s bright my lad and I worked hard to get him to agree to a tutor – His dad helped a bit, but mostly I was left alone to get on with it… Maybe I didn’t ask enough I don’t know but when you’re in the eye of the storm you kind of hope someone will take over and of course they never do…

those 6 weeks were a marvel his tutors were great he worked hard – do the bits of course work he needed and combined with just enough work from Yr 10 and a couple of exams he made the deadline…

That summer day _ I can still remember it clear as a bell he smiling beaming face 2 GCSE’s Maths and English grade C – he was euphoric my lovely, funny bright lad was there for just a moment…

Gosh my eyes are full of tears – perhaps only a parent of a teenager lost to you could understand the feelings when the child so dear to you and yet so lost shows a glimpse that they are still there somewhere…It gives you hope

I wasn’t foolish enough to know he was better, but he maybe had turned a corner… Or had he?

In truth yes and no – we have never returned to the horror times and he has never again threatened me… Perhaps the conversation where I kicked him out and sent to his dads about just how men become abusers of women… Who use violence and the threat of it to get their own way… Not a pleasant conversation to have with a 15 yr old…

He went to college, got through the yr just… Got in with yet another crowd who abused his desperation to fit in… Imagine if you can the utter despair of your 16 yrs old celebrating his birthday with 1 person who had remained… And not one other person came – I cannot begin to describe how much I wanted to pick him up and protect him from that pain…

I made mistakes god did I, my own fear and pain permeated our life… Just as much as his… But I tried I never once walked away… I took every bit of shit he threw at me… Cause after all who else would?

I’m no saint – far from it but I loved him then as I do now…

Forward wind 3 years… Its rough still and he is still a shadow of the 14-year old with such promise – he no longer lives at home, and our rocky relationship hanging by a thread is growing stronger…

He has little help, lives on ESA and is not shy in telling me how bad a parent I was how I let him down, how angry he was with me and by the time I did something at 14 it was too late what could I say but I’m sorry…

I don’t know how to end this blog post… The one none of you will, ever read… Other than why do we allow families to reach crisis point before anything is done?

why are you left alone to struggle on and no one helps – no one steps in and I’m just 1 mother with a son who flew off the rails, who lost his way and in the process almost lost himself…

I don’t know what the future holds for him – but we were never a problem family we just had problems… Mental illness can strike at anytime but for teenagers and their families the brick wall and impenetrable maze is soul destroying…

If I could change it I would

1. Have a pediatric psych on call in A&E not leave people to have to make an appointment and do it themselves with no support

2. Have rules around mental health for teenager so case conferences are triggered and early intervention happens to prevent a crisis

3. Have inpatient space for teenagers at risk who may not be acute but are close to it where time out and space to be assessed might prevent a total melt down

4. Offer help, support time out for parents and carers – give them advice and help not just leave them to cope cause you know what we don’t.

5. Have a fundamental review of CAHMS and mental health services in this country but not just from a professional’s perspective – from young people themselves they know what they need listen to them.

But above all I wish no other family has to go through what we did… Sometimes I allow myself an If Only moment… What could I have done differently? But more important what could someone else have done to help us when we most needed… Would he now be healthy and well enough to go to be in Uni or creating amazing art work or websites… I will never know. Because we only have now and somewhere out there is another parent facing the same thing…