I first asked social care for help with my disabled son in 2009. He’s a delight, The Boy – very bright, utterly charming (in a Little Lord Fauntleroy kind of way), and very chatty. He is also, as many autistic children can be, very high maintenance. He doesn’t sleep at all well (thanks God for melatonin). He has ‘meltdowns’ – probably best described as turning into a whirling dervish of fury. He also has quite severe sensory processing disorder, which means that he experiences the world in a very different way to you and I. Loud noises can be unbearable, tiny noises that we’re not even aware of can be intensely irritating; fluorescent lights can have a flicker that makes them hard to look at for him; clothes have to ‘feel right’, and heaven help us when he outgrows his favourite clothes! Oh, and sensory overload is very dependent on his mood, so the goal posts constantly move. Deep joy.
Anyway, I digress. My first tearful cry for help (an hour of sobbing on the phone to our local social care department) was back in 2009. The Boy was diagnosed with Asperger’s and Sensory Processing Disorder in 2008, after first seeing an occupational therapist, speech and language therapist and paediatrician in 2005. It can be a long old process, diagnosis – and in my experience, you have to keep chasing all the time. The Boy’s OT notes were ‘lost’. There didn’t seem to be any sort of central point where all the therapists sent their notes and assessments, there was no coordination – one of the reasons, possibly, why the diagnosis took so long. So, we had a rough few (6) years, The Boy and I, from when he was born until when he was diagnosed – he was clearly quirky, although very bright, and very demanding.
The first cry for help to social care was followed up with… nothing. Despite their promises to call back, despite my desperation, despite my tears, despite me saying that I didn’t know how I could carry on – nothing.
Social care were contacted when The Boy had his statutory assessment for special educational needs (long story for another blog!), and asked if they had any contact with us. This was about 4 months after I’d begged for help. We’d actually just moved house by this time. Social care, in their wisdom, decided as they couldn’t get in touch with me on the number they had, I must have moved out of the family home as a strategy to cope with The Boy’s behaviour. Now, bearing in mind that I was a single mummy at the time (they were aware of this), would you not have been concerned at that? That a child, aged 6, had been apparently abandoned by his mother as she couldn’t cope with him, and as far as you knew there wasn’t another adult looking after him? Their records show that they failed to call back. And no further investigations were made. They just left it, and closed the file.
So that was the first self-referral. We’re now three and a half years down the line, and many crises later we’re still fighting to get the help we need. But that can wait for another blog.
Let’s end with some positives. The Boy started at a specialist school in September and it’s been a revelation for him (and us). I asked him on Sunday how he was doing, and he replied (in his inimitable style), ‘Mum, I’m enjoying it immensely!’.
Poor little Menace has had a rough ride of things with The Boy, and it’s a hugely difficult situation. I took her out today for some fun – nothing too exciting, just a wander round some shops (including the pet shop), then lunch out with some friends and a visit to a soft play centre. She loved it – I loved it. Just spending time with my gorgeous 2 year old, being mummy. These little, normal snippets of joy are such a blessing, and I try and make the most of every single one. I’m often so knackered from all the autism stuff that I can’t see the joy, but today it was there in abundance.