By swan uk member and blogger - theworldofgorgeousgrace.wordpress.com
Over the past year, GG has started to struggle with her behaviour and it has become progressively more difficult. It has been incredibly challenging at times with full on meltdowns – and no, I do not mean a toddler type tantrum – I am talking about complete loss of control, repetitive aggressive / dangerous movements, screeching that must hurt her throat and an inability to be distracted at all. Occasionally GG is hurting herself despite our best efforts to keep her safe. Anything from 15 mins to an hour is typical and it breaks my heart.
Wrapping GG up into a huge cuddle, using deep pressure and singing repeatedly is the only strategy we have for these situations. It has a varying degree of success but at least keeps her safe and if I am honest the singing helps keep me calm too. However we are very aware that we won’t always be able to do this – already a tall six-year-old, for a child with low muscle tone and hypermobility, GG is incredibly strong when determined.
Of course where are my other kids when this is happening? Looking after themselves is the answer – the amazing big sister watching over the well behaved younger brother, both knowing that staying away is safest and so wonderfully bringing GG her favourite blanket and an apple that can so often provide a comfort – but at times is thrown back in their faces … how to explain that GG cannot help it? How to ensure that they know GG loves them and treasures them and in that moment she is not herself.
It is difficult to admit you need help with behaviours. I felt a failure that I could not manage a six-year-old, that GG who most people see as the truly adorable giggly girl she is, could prove such a challenge at home. I found this really difficult to vocalise. However we needed help and that is what I sought – rather unsuccessfully …
Avenue 1: School – Of course GG’s behaviour in school is impeccable, brilliant in fact. That means we don’t get any help with issues at home.
Avenue 2: GP – Try school. Umm did that. Oh.
Avenue 3: The amazing SWAN UK networks – they came up with the most promising options, our Learning Disability nurse (doesn’t exist here), the challenging behaviour foundation – a fab website with loads of resources but you need a group of 10 to access any workshops. Educational psychologist – ah yes but they are attached to school – see point 1.
Avenue 4: School nurse – suggested CAMHS – we explored that option. The first questions were around drug use, alcohol abuse and underage pregnancy. Clearly not quite the right forum for GG.
Avenue 5: Paediatrician – suggested the school nurse and to look at the ‘Local Offer’ – this did lead to the discovery of a great resource online but nothing which fitted the bill (I’ll return to ‘the bill’ shortly)
Avenue 6: The Care Commissioning Group (CCG) – yes I resorted to meeting with the CCG team to try and understand where in the jungle of LA / NHS provision did learning disability behaviour support sit. The answer ‘we don’t know’.
In the end we racked up another impressive bill by seeing a private educational psychologist – money well spent as it has helped so much but it should not be necessary. A full and proper assessment of the extent of GG’s learning disability – it hurt to hear, I shed a few tears but it helped us to understand. We can now distinguish between misbehaviour and anxiety – we had not realised how anxious GG can be, reassurance and understanding has helped our gorgeous girl so much. Tactics for turning aggressive behaviour to her siblings into fun, enrolling GG’s siblings in how to do this proved a great move. This has started to really help life at home.
If you’ve made this far you might like to indulge in a little light relief – in a kind of, if I don’t laugh I will cry kind of a way – here’s my favourite selection of comments I have heard this summer…
‘You’re a bit big for that buggy’ (Random stranger in pharmacy) – that’s right GG up you get and walk!
‘The rest of us have to get our own kids to school’ (SEN transport team) – uh huh, not quite the same though is it, oh and BTW I get my other kids to school all on my own, grrrr.
‘But all kids have meltdowns – are you sure she isn’t doing it for attention’ (Another mum) – that’s right, in order to get attention my daughter needs to pull out her own hair…
‘Have you tried the naughty step when she is in a meltdown?’ (Well meaning friend) – now why didn’t I think of that, next time GG is out of control clawing to get out of my grasp, I will sit her on the naughty step, that will fix it right?
‘Honestly – my (neurotypical) daughter is just like that’ (A less known parent) – no, really, just no.
‘So how are you coping Mum? It’s important to look after yourself’ ‘(GP) – silent screaming in my head as no practical help is offered.
Needless to say it has been a summer of wine, a ‘few’ G&Ts and a whole load of chocolate.