When I first thought about writing a blog and setting up my own website, one important thing for me was, what to name it? I brain stormed several ideas including “living with childhood mental health” or “Autism, PDA and then some”, however I wanted to try and capture our whole journey. From pre-diagnosis, to diagnosis, from mainstream, to Specialist school and all the bits in between including the good, the bad and the damn right ugly!
I also wanted to capture the lack of support we experienced and how we coped with this. For many families, ourselves included, there is great suffering along the way due to poor or often non-existent services!
The thing is and probably the biggest influence when trying to come up with a name, was whilst I had/have lots that I wanted/want to share, I also didn’t/don’t have any answers! However harsh it sounds, in our experience, there are no quick fixes and there is certainly no magically cure. With this in mind, No Magic Wand UK was born!
So for us, when things started getting really bad (Crisis), at the age of approximately 6 years old, I madly contacted everyone and anyone I thought could offer some practical help and/or support, but to no avail. This was not only incredibly frustrating but also came with a great sense of fear! How could there be no one that could offer us anything? How can I do this alone?
As time went by, I continued relentlessly banging on supposedly support services’ doors! Eventually when services finally got involved, I truly believed that help was on it’s way but unfortunately this didn’t come without it’s own challenges!
Our Experience with Services!
Whilst our experience with CAMHS during initial assessment and diagnosis (‘Diagnosis Journey up to aged 6yrs‘) was a relatively positive one, our experience with the CAMHS Care Co-ordinator was definitely not!
I remember vividly during one of our very first appointments with the Care Co-ordinator where she advised a parenting course! It was at this point I totally broke down! By sending my on a parenting course insinuated that my daughter’s behaviours were all my fault! It was so incredibly frustrating as I knew that these behaviours were not a result of poor parenting! Why could she not see that?! I was on my knees and we needed help not a poxy parenting course!
I felt that I had hit a brick wall. If a parenting course was all they had to offer me, then I was screwed!
Thankfully, we quite quickly got to see the psychiatrist and she soon scrapped this ridiculous suggestion!
I came to realise that the Care Co-ordinator was nearing retirement and unfortunately had clearly lost all motivation and ability to organise herself and her workload. Time and time again things wouldn’t get done or she wouldn’t have remembered a particular conversation, important things like completing the requested ‘Health section’ on my daughter EHCP which was to feed into the annual review.
One thing that particularly pushed my, usual very tolerant, buttons was the situation regarding therapy. Having assumed that we had been on the waiting list and waited the 18 months timescale, I was gobsmacked to discover that she hadn’t even done the referral!
Post retirement I was hopeful that our new Care Co-ordinator would be more efficient, proactive and on the ball. Sadly not. Our appointments consisted of the same small talk questions ie ‘how’s school?’, ‘so tell me what makes a good friend?’ etc.
I sat there quietly whilst I could feel my blood start to boil and whilst my daughter sat there clearly feeling uncomfortable……I wanted to scream at the Co-ordinator, ‘she hasn’t got any friends, she is fully aware of what makes a good friend but that doesn’t mean that this in turn magically creates and sustains friendships! Nor did it mean that this would somehow overcome all of her difficulties in this area! I also wanted to scream at her ‘that by you constantly asking this, in my opinion, stupid question actually just reinforces all the negatives and reaffirms that she has no friends!!’
Another big challenge with CAMHS for us was the fight for further assessment.
Having been fobbed off for far too long that the additional presentations (including, at the time, very worrying hallucinations) being due to my daughter’s Autism and PDA, CAMHS finally agreed to make the referral for further assessment in London. FINALLY I thought, but sadly this wasn’t without further issues and was delayed by months due to CAMHS not even knowing their own referral process!
A whole year on, once we finally had a further assessment, my daughter was diagnosed, additionally, with four mental health conditions!
CAMHS Crisis Plan – fit for purpose?:
I am wondering whether I am alone in questioning the ‘crisis plan’ procedure?
For us, in the case of an emergency, we are told to call the Duty Team at CAMHS.
So having duly eventually followed this advice, despite my thinking that this was a waste of time, and called after a significant incident where I had been physically attacked, the house trashed beyond recognition and my daughter threatening suicide, both of us were in pieces and guess what…..no-one picked up!
Another time when I called and actually spoke to someone, I was asked the question ‘is anyone at immediate risk now?’ Umm, no, meltdown has now passed and calm semi restored. I did question, what was the point in calling when any risk had then been reduced?
When my daughter is in full blown meltdown, unsurprisingly I’m unable to pick up the phone! I can’t say ‘hold on a minute, if you could please just stop biting, hitting, kicking, spitting, ripping my clothes and pulling my hair just for a few minutes whilst I make a phone call…..’. I don’t know whether I am missing something here but this just seems a ludicrous ‘crisis plan’ to me!
Bespoke Parenting Course – Hooray!:
When I was approached by CAMHS about this brand new course they were putting on, a course that was specifically for parents who were ‘experiencing violent and challenging behaviours’ from their own child, I thought FAB! I was honestly excited and hopeful that this was actually going to be a course which had been tailored for the very purpose that I was there for!
CAMHS surely totally ‘get it’ and this ‘tailored course’ would be just what I needed! However, frustratingly, this was not the case at all! Unbelievably the key message from the course was, “sit your child down and tell them that this will not be tolerated”. Seriously! Duh, I hadn’t thought of that! I truly felt totally deflated. CAMHS clearly didn’t ‘get it’ at all!
Introducing yet another professional:
Time and time again, as yet another new professional was introduced into our lives, I would have the difficult task of trying to convince my daughter to engage and be on board. This was getting increasingly tricky as I had naively promised my daughter, with each professional, “this is going to be the one, this is going to be the one that actually helps us!”. So having convinced her so many times previously, all of which had fallen flat, of course she wasn’t going to believe me again that THIS IS THE ONE!
Time and time again we were failed. We were sold the idea, by the professionals themselves, that they “were there to help and offer support”. When in reality, they sadly could offer us nothing!
So after a long battle to get Children’s Services to finally pick us up, we had a relatively positive start with the Social Worker.
In the very beginning of their involvement, I DID feel emotionally supported as there was regular contact and I felt listened to. We were fortunate in the sense that we had been allocated a newly qualified social worker. Don’t get me wrong, this initially came with mixed emotions, would she be naïve and not have a clue? Or on the flip side she was newly qualified so should be up to speed?
Unfortunately, as her case load grew, the support quickly diminished. The visits weren’t so regular, the calls stopped and unbelievably even the responses to incidents I reported in via email, weren’t even acknowledged let alone responded to.
These incidents included life threatening incidents, how on earth could these just be ignored?!
Further cracks were appearing and I couldn’t believe my ears during one Family Support meeting when she stated, in front of other professionals, ‘I am concerned about your daughter’s emotional well-being due to your FIXATION on further diagnosis’ – WHAT?? Granted this was prior to the further assessment (where my daughter was diagnosed additionally with OCD, ODD, Multiple Anxiety Disorder and Depression), however, I was made to feel that I was somehow emotionally damaging my daughter for pursuing a specialist assessment!
Post further diagnosis, there was no apology, no ‘I’m sorry I doubted your concerns as a parent’, no public acknowledgement (in a Family Support meeting where I had previously felt like I had been ripped to shreds) that she had been wrong about her concerns……nothing!
Despite me having, naively, been under the impression that Children’s Services involvement would bring support, from May 2017, I was told multiple times, by the Social Worker and indeed her manager, that ‘there is nothing they can do to change or improve things’. So I questioned what had been the point of your involvement, since 2015, then!?
I have an ongoing complaint against Children’s Services which I am currently unable to go into at the moment, but trust me there is a long list of failings!
Specialist Behaviour Intervention:
When Children’s Services first became involved I was encouraged to learn that they could buy in something that was called a ‘Specialist Behaviour Intervention’. This was sold to me as being an ‘expert in Autism and challenging behaviours’. GREAT I thought this is going to be just the help we need!
I was oddly pleased that on the first visit, the Specialist Behaviour professional got to witness a full blown meltdown, where the house was trashed, I was physically attacked and sworn at, glass smashed etc! I thought YES! Now she has witnessed, what we were experiencing on a daily basis, she will have the answers to restore some calm and control back into the household.
But again, this was false hope! Despite this being a very expensive service, at £1,000 per 6 sessions, unfortunately I struggled to see where her expertise lay. I was ultimately given a blank piece of paper, which had been laminated and told to write two choices on it so my daughter could choose and feel in control. I could only assume that the professional thought this would eliminate meltdowns!
Whilst moving to a Specialist Independent School had many advantages, not least by not having the constant worry about ‘getting that call’ to go and collect early or indeed to inform me that she had been excluded yet again, it still didn’t resolve or help the challenges at home.
In fact, when I accepted the Specialist placement, I was sold this as being a ‘package’ by Children’s Services. School placement would be sorted and they would provide support in the home. Guess what….the support in the home did not happen!
But the positive I held on to was that my daughter WAS IN SCHOOL!
As part of my many self-referrals, I had referred my middle daughter to Young Carers. I was only too aware of the negative impact that my youngest daughter’s behaviours were having on my middle daughter, not least witnessing the injuries I sustained.
Whilst it took a little while for my middle daughter to have the confidence to contact the Young Carer worker independently, that confidence was soon shattered.
It followed a big incident one evening that went well into the night! My middle daughter text her worker, she was absolutely beside herself as things were in full throw at home. Whilst she naturally didn’t expect the worker to respond at that point, there was a hopeful expectation that she would make contact as soon as she picked up the message in the morning. This did not happen. In fact, the worker never even responded to the crisis text at all and the first thing my daughter heard from her was a generic invite to some Young Carer event! How was this helpful or supportive?!
So if there is no magic wand…..what now?
One of my biggest learning curves, throughout this whole journey so far, was not only realising that there is no one that can help or change our situation but also ACCEPTING this in my own mind.
As a parent, once you are able to accept that there is no magic wand, that this is indeed actually happening to your family but shockingly there are no services that have either the expertise or capacity to offer the support your family needs, what can you do?
Well the answer is RESILIENCE BUILDING! It is paramount that you do everything within your power and strength to reach out and talk about it! Network with likeminded people locally and online! You may not realise it, as I didn’t initially, but there are definitely other families experiencing very similar, if not the same as you are right now.
I personally found great strength from online support groups as I realised that I was far from alone, it wasn’t just my family experiencing what could often be described as ‘hell’.
Resilience is also built by purely living the life we have been dealt. I thought I was a strong individual before I had my youngest daughter, but this is a whole new level!
It’s also really important to look after yourself. I’m not talking about giving yourself a time slot to do something just for you. I’m talking about allowing yourself time to just have and acknowledge your own personal emotions! It’s okay to feel frustrated, it’s okay to feel angry, it’s certainly okay to feel upset and to shed a tear (or even a bucket load)! We are human after all and it’s perfectly okay to have your own feelings about the situations we are presented with on a daily basis.
Reach out to friends. They may be few and far between by this point but reach out nonetheless, your true friends will want to help if only to offer you a shoulder to cry on.
Educate those closest to you on your child’s needs. If you are lucky enough to have family and friends willing to listen then grab it with both hands! On the flip side, if they are not getting it then don’t waste all your time and energy on this. Your child comes first!
Another important thing to remember is that whatever your child may or may not be diagnosed with, trust your gut instinct and change up the strategies you use! Normal parenting often needs to be flipped on it’s head, but that’s okay too! You need to do whatever you feel you need to do to make your child feel safe, particularly emotionally safe. It is only by using these methods that you have any hope of survival and getting your family through this!
YOU CAN DO THIS!! There are going to be times where you are literally on your knees, but with parenting a child with additional needs and/or mental health comes RESILIENCE and an inner strength that you could not imagine possible!!