In the wake of Mental Health week I thought I would share with you a story concerning children and mental health. People often assume that only adults suffer mental health problems but it’s not always the case and in fact over the weekend I read a heart-rending article about a little girl who was finally diagnosed with schizophrenia at the tender age of just 6 years old. My story is not nearly that bad and we certainly don’t suffer the nightmare her parents did, but like them we are struggling to find any resources to help our own son.
Art is now 9 years old. I’ve blogged about him before and although I haven’t really mentioned much about what is going on since, the problems remain. I’ve been up since 3.30am this morning and so I’ve had time to reflect about what is happening and what could be the source of his problem. You see we have to diagnose and treat him ourselves because there is no-one else to help.
Art has always been clingy. Looking back I remember an incident when he was around 8 months old. He was asleep in his pram and he was taken for a walk by a well-meaning teenager whilst we were on holiday in Spain. He woke up during that walk and started crying but rather than bring him back to us, she took him to a neighbour so for almost an hour Art was surrounded by people he has never seen before, speaking in a foreign language. He went to sleep in familiar surroundings with us by him and he awoke in very unfamiliar surroundings with strange people speaking a strange language. By the time he came back to us he was hysterical and remained unsettled for the next couple of days.
This is by no means an explanation of his behaviour now, nor am I attaching blame to anyone. It was just one of those things that happened and it may or may not provide a clue to the way he is now.
As I said, he’s always been quite clingy and as he got older, rather than get better his clinginess got worse. He hated me leaving him in nursery and was never happy to play anywhere on his own. There were a couple of incidents that always happen with children, when you turn a corner in the supermarket and lose sight of them for instance; when this happened to Art he over-reacted and would be inconsolable until you got him home.
He then developed a fear of us leaving him. I remember nipping out to buy a few groceries, leaving him in the car with his older sister as it was pelting it down with rain. I was gone around 10 minutes and when I got back his sister was trying to restrain him in the car because he’d become hysterical. If I went to pay for petrol, he would get out of the car and come with me. If I parked up just to nip into the sorting office to collect a parcel, to drop off a letter or simply to take a picture whilst on holiday he would also get out of the car and follow me.
The crux came whilst on holiday to a familiar place where we had been before. He had a nightmare every single night of the holiday and became hysterical when we put him to bed, even though he was sharing a room with his sister. He would scream and sob and no sooner had we put him back into bed than he was out again trying to get hold of us. It was then I realised just how serious this was. We didn’t understand why he wouldn’t go to bed and we shouted at him, threatening him with no sweets/toys/treats of any kind if he got out of bed again. In a moment of madness I even threatened to smack him. But although he was scared of being in trouble and although he was so sorry for keeping us up, his fear overrode every other emotion. This was not him being naughty or demanding attention, this was him being petrified.
Gradually we began to discover what he was petrified of. He was convinced that either he would be taken away from us or we would just disappear from his life. His fear grew as he did so that it affected his everyday life; he would follow me from room to room; if he called me in the house and I didn’t answer straight away he would panic. Getting him to school became a nightmare. His old school once called me up every day for a week because he would make himself ill and collapse in tears with a tummy ache. Eventually I made the quite bad decision to move him to a quieter and smaller school because I thought he would fit in better there, it was within walking distance to where we lived and was a much calmer atmosphere. I could not have been more wrong. He was prised off me every morning by around 3 teachers and I had his screams echoing around me as I walked away. Moments like that will haunt me forever.
We eventually took him to the GP who referred him to a children’s mental health programme called Healthy Minds. The Parent Teacher Advisor at the school also got involved and after some humiliating discussions centring around his home life where I felt I was being interrogated, it was decided that he probably didn’t have autism/aspergers/OCD but that perhaps the problem could be solved with a change in our parenting; this despite the fact that we had managed to raise a perfectly sensible, rational, kind and thoughtful young girl previously.
I was told that Art would not be assessed by the mental health team unless I first completed the parenting course so I did. I must admit I did find it all very useful and I took away quite a lot from the course, much to my surprise, but it did not solve the problem. Art was now waking around 5 to 6 times every night with nightmares.
Once I finished the course I was told the waiting list for Healthy Minds was extremely long, running into months and it could even be a year before we were seen. I was told that children who had been abused and who self harmed were also on the waiting list which made me feel terrible that we were taking up one of those places. I then found out that the treatment for Art would involve family counselling in the form of cognitive behavioural therapy and that it only lasted 6 weeks, with each child being allocated one hour a week.
Eventually after 5 months I had bought a couple of books from Amazon which seemed to help and his nightmares reduced. Healthy Minds was transferred to the care of another council because two areas had amalgamated and I was told that I would need to get Art referred again as his first referral now did not count. I honestly could not see what 6 hours of CBT would do and so I declined.
By this time school had applied for 6 sessions with a child counsellor for Art and so he was seeing a lovely woman named Rachel for an hour once a week. It was Rachel who first suggested to me that this could stem from an further back in his childhood. That the fear it created in his mind could now have become a phobia. The more she talked to Art about his feelings of being left alone, the more his nightmares increased. Those sessions came to an end and as far as the school were concerned, they had exhausted the resources available to them.
Art is getting better at school. He no longer has to be prised from me in the mornings but to this day he remains miserable there and makes me promise every morning that I will be there at 3pm to pick him up. School doesn’t finish until 3.15pm.
As I write this, Art is much better than he was, but he’s certainly not ‘cured’. This last week has seen a return of his nightmares. Last night he woke up around 3am screaming. It took around an hour to settle him as each time I put him back to bed I would hear him crying and he eventually came back into our room.
He has a nightlight, he has books by his bed, he knows he can turn on the bathroom light, I’ve talked to him about thinking nice thoughts, he has a drink by his bed and he has an assortment of teddies in with him but still the first thing he does after a nightmare is to come into our room. He needs to reassure himself that we are still there.
More often than not he won’t go to birthday parties unless we stay and at the age of 9 that’s not very practical anymore. Some parents understand more than others. He’s easily scared and many times we’ve had to cut short days out because he’s seen someone dressed up (Doctor Who characters seem to be all the rage) and has freaked out. In his mind, these are monsters who might take him away from us. We don’t have babysitters and he doesn’t get invited round by friends to play.
We truly feel helpless. As his mother I feel as though I’ve failed him. When I see the fear in his eyes at night it hurts because I should be able to take that fear away but I can’t. I have another meeting with the headmaster this week but what else can they do? I could put him back on the waiting list for CBT which is the only thing we are being offered now. I don’t want to because I fear that if it doesn’t work (and are 6 sessions enough to get to the bottom of this?) we are then left with no other help available to us.
When I had mental health problems I had plenty of help that was available. The adult mental health team were there for as long as I wanted them. I had home visits and an emergency number to call if things got too much. I knew I could take medication or I could request other treatments, all on the NHS. My 9 year old son doesn’t have those choices. What sort of mental health problem can be resolved with 1 hour sessions over 6 weeks?
Once again I find myself searching Google for an answer and ordering yet more books from Amazon as I turn amateur counsellor and psychologist in a desperate bid to help heal my own son. So as Mental Health week fades into the distance for many, for some of us it’s there every single day and I fear that a generation of children with mental health problems who are being failed by the NHS, will grow into adults with mental health problems and by that time, it will be far harder to treat them.