****Warning****explicit account of what this was like for us****
I have deliberated a great deal over deciding whether or not to share our very personal experience with ‘hallucinations’ and not a decision I have taken lightly.
For me I had always associated ‘hallucinations’ as being something that adults with significant mental health conditions suffered with and experienced. It had not once crossed my mind that this could be something my child could suffer with! So, I thought, if my child could experience hallucinations then there must be other children out there too.
So, I have decided to bravely share our experience, with the permission of my daughter, because even the scariest of topics need talking about right?
‘Hallucinations’….scary word eh?! Well ‘scary’ is a massive understatement as these are very frightening and worrying experiences not only for any parent but very much so for any child!
My daughter was just 8 years old when it came to light that she was experiencing both auditory and visual hallucinations.
When CAMHS first asked me whether I had asked my daughter the direct question, ‘do you hear voices?’. I was very quick to respond, ‘no I haven’t and nor do I feel qualified to either open that potential can of worms or indeed feed her with this idea if it’s not the case’.
I was horrified when the answer, to CAMHS asking this direct question, was ‘YES’. Had I been wrong to shy away from exploring this possibility?
The only other question I recall CAMHS asking was ‘are these familiar voices to you, people you know?’. My daughter’s response to this was ‘no, they are creepy, scary voices’. After this I do not recall CAMHS exploring this revelation any further and to me it was almost, well what was the point in that and what do we do now?
I needed to know more
I personally couldn’t leave it there! I’m no psychiatrist but I needed to understand what was going on for my daughter! To be able to even begin to understand it I needed to know more about these ‘voices’. So with this in mind I did a body map style activity (for want of a better word!) with my daughter. This was daunting! However, I initially made this fun. I bought a roll of lining paper and we had a giggle drawing round each other’s bodies.
Then came the much more tricky bit, I wanted to explore what these ‘voices’ meant for my daughter but I needed to approach this in a way that meant I wasn’t feeding her information or leading her in any way, it needed to be a true reflection of her experience. So I came up with a few opening questions.
The result of which was frightening! It transpired that she not only heard one or two voices but she was experiencing a family of seven! They consisted of ‘a Mum, a Dad, a teenage boy, a teenage girl, another boy and girl and a baby’. Wow!
She went on to describe them as sounding like ‘ghosts, witches, creepy voices, like Frankenstein and vampires’. She went onto say that they are ‘scary’ and tell her to do bad things like ‘be naughty’, ‘hurt/kill me’ and if she didn’t do as they said she would ‘get a punishment’. Double WOW! She also explained that ‘they’ would get more aggressive if she didn’t do as they said, ie obey them, and that the ‘Mum. Dad and the baby are the most aggressive’.
She was apparently able to ‘push’ the teenage boy and girl away, but only if ‘they didn’t have a knife’.
I had to try and remain composed whilst listening to my daughter explain how these ‘voices’ tell her how she is going to die and how she ‘will get cut badly’! My poor baby, how on earth had she managed to keep all this to herself for so long?!
I also wanted to know how often she was hearing and seeing this ‘family’ and was shocked to learn that it was ’40 times a day, 5 times an hour’. Which obviously didn’t equate but it did give me the clear message that this was pretty much all the time! She went on to say that she hears them ‘everywhere!, in the shops, at the park, in the pool, at home and at school’.
When had it all began?
Looking back, I believe that my daughter heard ‘voices’ for approximately 5 years before it was discovered by CAMHS.
For several years there had been behaviours that I just couldn’t work out and had just noted down as being ‘random’. These were behaviours where there wasn’t any clear logical reason which could explain these. There were also, what I can only describe at the time as, ‘sabotaging’ behaviours.
Historic sabotaging behaviours would include doing random things like making my clean clothes wet whilst I was in the shower and/or putting wet flannels and towels in my bed which I would only discover when I went to bed. All very strange.
Having now revealed that my daughter experienced ‘voices’ and opening those conversations, she was able to explain to me why she did those things, all that time ago. She explained that she did these things instead of ‘hurting/killing me’. It transpired that the ‘voices’ had been giving my daughter ultimatums!
So what did hallucinations look like for us? Frightening times!
In September 2016 my daughter had the most scary visual hallucination!
It was during the day, whilst she was upstairs in her bedroom and I had been in the kitchen, when I heard a high pitched scream from her bedroom. It was one of those screams when your gut tells you that something awful has happened!
I ran upstairs to find her sat up in bed visibly shaking and her teeth uncontrollably chattering! When asked what an earth was wrong, she replied ‘the voices!’ and then went onto say that the ‘voices were just here and were going to kill me’. She was absolutely petrified! She explained that ‘the mum’ had stated ‘we will kill you’ and described the ‘dad’ as being there ‘with a big knife’. She went onto say that they were both stood by her wardrobe but ‘they went when I screamed’.
My daughter went on to describe what the ‘mum’ had been wearing and described her as dressed ‘in old fashion clothes/blue dress (like Hansel and Gretel) with clear eyes’ and described the ‘dad’ as having a ‘short beard/palomino colour trousers’ (ie beige) and a white ‘blouse’. The picture she drew of them later was nothing short of haunting!
When asked how ‘they had come’, she described it as ‘a gush (like a gust of wind) and then knives swirling around her head’. She then went on to describe the ‘swirling’ and through our conversation established it was like a ‘tornado’ of knives.
Added to this extremely frightening experience, she then stated that the ‘mum held my head (actioning how she was held) and the dad put the knife to me’ (indicating to cut her throat) and this was when she had screamed and they had disappeared.
This was a terrifying experience!
No-one was safe!
I never knew when or where the ‘voices’ would return, however what I quickly came to realise (and was hypervigilant about) was when ‘they were back’, no one was safe!
Voice triggered attacks on others and herself were a scarily regular thing.
My concerns were raised up yet another level when one day I heard my middle daughter shout from the lounge ‘get your hands off of me!’. I raced into the lounge to discover that my youngest had made several attempts to strangle her!
This worryingly wasn’t a one off and there were other similar incidents where I had just been sat in the kitchen and out of the blue the next thing I knew my daughter had her hands around my throat!
These ‘voices’ were commanding my daughter to do extreme things and I didn’t know which way to turn!
My daughter was clearly horrendously tormented by the ‘voices’ and often these commands included extreme self-loathe which would cause my daughter, again out of the blue, to suddenly became agitated, writing on the page ‘you are a f***ing c***’, ‘you suck d****’, ‘f*** you’ (all in the third person). She would then stab a pencil into her arm and then bit herself hard on the forearm!
After a great deal of coaxing/encouragement, she was finally able to tell me that ‘they are back’ and went onto say that it ‘was the baby’, telling her ‘to kill herself’.
One of the most distressing incidents was when I had to physically remove a pair of scissors (we had been doing arts and crafts) to prevent my daughter chopping anymore chunks of her hair off. She pleaded with me to give them back to her and when I wouldn’t she totally broke down pleading with me to ‘suffocate her’ as ‘can’t go on like this anymore’. For any parent this is beyond heart breaking!
Even the fish weren’t safe!
Another disturbing incident that sticks in my mind was when my daughter admitted one evening that she had hurt one of the fish.
With some coaxing, she was able to tell me that she had hurt it by ‘pulling his tail and nearly squeezing his eyes off’. The fish subsequently died the following day and my daughter was absolutely distraught!
What I hadn’t picked up on at the time, was that two weeks prior to this incident, my daughter had requested that the fish be moved upstairs. She had asked for them to go into her sister’s room, to ‘keep safe’. With hindsight, this had clearly been a warning which I sadly hadn’t realised at the time.
Through further discussion, my daughter was able to tell me that the ‘voices’ had been telling her to ‘harm the fish or hurt her sister’ and this is why she had requested they went upstairs.
So unbeknown to me, my daughter must have been battling this ‘voice command’ for a whole fortnight before the ‘voices’ had finally won!
In addition to all of the above, we would often have, what appeared to be total random behaviours and outbursts at the most random times.
For example, we could be having fun playing on the Wii or watching a film together and out of the blue my daughter would sink her teeth into my arm! Again, through discussion, the ‘voices’ had apparently told her to do this. My daughter would then reiterate that if she didn’t follow it through she ‘would get a punishment’ which would be more severe.
Other worrying incidents would involve my daughter becoming agitated with no known trigger and she would take herself out into the back garden where she chalked over the patio: ‘… wants to die’, ‘… is a f***ing failure’, ‘… is a c**t’, ‘… wants the world to end because she wants to die’, ‘f*** … she can die in hell’. All of these again being communicated in the third person.
Delusional behaviours and paranoia were something else that massively concerned me about my daughter’s mental health.
There were several incidents where my daughter would become extremely agitated and volatile believing others were ‘staring at her’, even when this clearly wasn’t the case at all.
This would not only happen at home but also when out in public.
An example of a similar incident was whilst we were attending an appointment and were sat waiting in reception (at CAMHS). There was a lady sat in a wheelchair on the opposite side of the room, who clearly wasn’t looking at my daughter but she was convinced she was and became very agitated by this!
There would also be occasions where my daughter would be screaming at her sister to ‘turn the music down!’, despite her music not even being on.
It was approximately a year on from when CAMHS first revealed that my daughter was experiencing ‘voices’, that in turned out there was yet another ‘family’ now, making it a total of 15!
What was bizarrely interesting was when my daughter talked about there also being ‘others that she doesn’t yet know’. It was almost as if she had to ‘get to know them’ and their personality before she could give them an identity ie ‘that’s the mum’ or ‘that’s a teenage boy’.
As I am sure you can imagine, the impact on the whole family was horrific!
Whilst the safety of the whole family was extremely worrying, what was one of the most worrying was, what on earth was going on for my daughter?!
The impact on my daughter’s self-esteem was off the scale! She felt like she was ‘going crazy’ and so much so that she no longer felt able to cope with living.
So how did we cope?
The short answer to this, was not very well on many occasions!
However, in the absence of any professional supporting us with this I had to do whatever I could at the time to protect my family and try to keep everyone as safe as I possibly could.
So the practical things I put in place were fairly straight forward ie putting locks on the inside of bedroom doors (to keep everyone safe at night) and locking knives/scissors away. However, the emotional/psychological management was much harder!
I had to become even more hypervigilant about my daughter’s mortality!
I also needed to somehow come up with something that reassured my daughter that she was not alone and that she didn’t need to be trying to deal with this on her own. Communication was paramount!
By this point, we were already in a fairly good place with regards to communication, in the sense that my daughter could, generally, openly talk to me about the ‘voices’ albeit often when ‘they were back’ and in the heat of the moment.
I introduced a ‘Worry Monster’ to enable her to write things down on those occasions when she wasn’t able to tell me but we needed something more!
I strongly felt that we needed some form of distraction and for us MUSIC became an important distraction! This didn’t always help but when it did, to a certain degree, it helped to block the ‘voices’ out.
Over time, my daughter also became better at speaking out before acting on a ‘voice command’ and would occasionally be able to resist. She would often suddenly shout at me to ‘take the scissors!’ preventing yet another incident where she would chop chunks of her hair off.
I also came across a brilliantly supportive charity called ‘Voice Collective’.
To say this was like a living hell, is an understatement!!
I continuously fed all this back to CAMHS, but time and time again I was told that my daughter wasn’t suffering from psychosis in the true sense of the word. I was informed that these behaviours were all due to my daughter being Autistic with a PDA profile, which meant she ‘blurs reality and fiction’! This didn’t make sense to me, there was TOO much to these behaviours, how could this possibly be due to Autism and PDA?
I received zero help or support with trying to manage these experiences and was often dismissed not only by CAMHS but also Children’s Services!
I was a little hopeful when I discovered there was an Early Intervention Service, but shockingly we didn’t meet their age criteria to be eligible for support! The age criteria was 14 and my daughter was only 8!
However, when I finally came across a London based charity called ‘Voice Collective’ and despite me being out of area, they were so incredibly kind and supportive. They offered me advice on how to handle this and regularly checked in on us. Something I will be forever grateful for, particularly as they were the only ones to offer any support!
I am both extremely relieved and pleased to say that my daughter no longer hears ‘voices’ and hasn’t done for 2/3 years now!
On the rare occasion since, when I have suspected ‘they’ may be ‘back’, when I have talked to my daughter about the previous experiences, she would say that she ‘made these up’. In my mind there is no possible way these could have been made up and wondered if this was just her way of coping with the trauma these caused?
Who knows but I am more than relieved that this period is over for us!
What to do if your child is experiencing hallucinations?
There are four main key messages if you child is experiencing hallucinations (or you suspect this) and these are:
- LISTEN to your child
- BELIEVE your child and what they are telling you
- REASSURE them
- TAKE IT ON BOARD and do not dismiss as this is REAL to them
Seek professional help! Just because we didn’t get the much needed help and support it doesn’t mean you won’t! Professionals NEED to listen to parents and our children!
IF YOUR CHILD (or someone else) IS AT IMMEDIATE RISK, then call 999!
Finally, if you are getting nowhere with your local professionals then contact ‘Voice Collective’:
Phone: 020 7911 0822
For more ideas, see the Voice Collective Getting Help Quickly page.