I’m quite a fan of tea. And a huge fan of chocolate. But we all know what happens when you try to make a teapot out of chocolate, right?
This was pretty much the scenario at our ‘Team Around the Child’ (TAC) meeting today. The official line is that these meetings are to bring together all of Orange’s professionals at regular intervals to ensure he (and we as his family) are getting all the help and support that’s needed. Sounds great…
But after two meetings in a row, where I have been given the Spanish Inquisition over how we care for Orange, surrounded by a room full of professional faces who are no help at all in assisting us with Orange’s most pressing needs, I’m beginning to wonder just what they are for, beyond a tracking and auditing service for the local authority?
The two most urgent needs we as a family have had in the last year have been a) getting Orange his place at the right special school and b) finding adequate, specialist childcare. And yet not one of the professionals involved in our TAC meeting process has contributed anything positive at all to help us get there.
In fact, none of the local authority people in the room today – including the regional senior SENCO (Special Educational Needs Co-ordinator), our ‘Lead Professional’ and the ‘Link Person’ between Cornwall Council and the special school Orange will be attending in our neighbouring local authority, knew anything about the fact he’d been offered a place at the special school we’ve been pushing for.
Nothing. I had to tell them. And, get this. They didn’t believe me. If I’d heard ‘IF Orange starts at that school‘ any more times I think I’d have had to ask them all to leave mid-sentence. I don’t know how many more times I’d have had to say ‘his transition meeting is on Friday’ to get one particular person to drop the ‘ifs’.
I like to keep this blog positive. To put out into the world a view of life with a disabled child that is full of happiness, purpose and fulfilment, and to show the world that we are just a common-or-garden family, trying to get on in life and do what everybody else does too.
But right now I’m feeling trapped and angry. Surrounded and cornered by local authority busy bodies who sit in my living room and tell me nothing more than what I can’t do, and provide no positive solutions, help or guidance other than to repeat constantly that they are here ‘to support us’.
Well perhaps the local authority would like to consult with the Chambers Thesaurus that tells me in black and white that ‘to support’ is ‘to advocate for’, ‘to encourage, endorse and assist’.
I had, naively, assumed that our Team Around the Child, and the Lead Professional of that team, would be our first line for any help we might need. Our first port of call for informed assistance, signposting to services that we might not know about, and actually providing practical help to work towards addressing our needs.
Instead, at each meeting I have to answer a steady stream of jargon-filled questions so the local authority can tick boxes on a document. A document that contains deeply personal information about our family circumstances that I can’t even see before it is circulated to all and sundry because the local authority will not email anything to anyone outside of their own four walls.
And after the Spanish Inquisition I am told all sorts of marvellous gems like ‘you choose to make your life more difficult by working’ and blatantly unhelpful untruths such as ‘well, the school is full, you know’ (repeat x 100, and we’re IN now so neeeeeerrr…).
After being surrounded by a sea of blank, pointless faces for the second time in as many months, when asking basic things like ‘how can you help us find trained people to provide childcare and babysitting for Orange, when you are telling us we cannot leave him with a regular babysitter and I’m going INSANE here trapped in my own house…’, and being told nothing more than we should ‘ring the Family Information Service’ (which we’ve done, and they were similarly chocolatey in nature), I think it is time to Sack The TAC.
Individually, I’m sure they are all perfectly pleasant people. Likeable and kind, I’m sure. But I was probably stupid to trust them. Naive to believe that they can actually provide any help.
And what has crystallised it for me is this.
After today’s TAC meeting I was absolutely beyond the end of my wit. In desperation, I poured my heart out to Facebook and asked if anyone could help us find some specialist childcare.
Within an hour, I had messages and phone calls coming out of my ears from people (some of them professionals with access to the same information as those in our TAC), giving us details of local charities that provide specialist childcare, organisations that provide nursing care in the home that we can use some of our Direct Payments to fund, websites we can use to search for babysitters with special needs experience, and local support groups that might be a good source of contacts.
I’d like to know why my sofa full of professionals couldn’t, or chose not to, share any of this information with us when asked. I’m pretty sure I know. It’s either incompetence, or money, or both.
I’ve had an extremely large gin and tonic. And an entire box of Maltesers. For now, I’m off to bed to read about Buddhist Monks, and calm my seething heart.
But tomorrow? Tomorrow, it’s firing squad time.