Balancing Act

I’ve mentioned previously that, even before this present unpleasantness, being the parent-carer of a young autistic adult is a bit like a game of Jenga 

First you go through the heartbreak of writing about him at his worst on his worst days in order to get ‘points’ that qualify for X amount of budget. 

Then you wait for local authority managers (who you never actually see in person) to approve, agree and sign off a "Care Package" and associated budget. 

You contact the approved providers and organise the two days care (09.30-15.00 at best) the budget allows, and organise other activities out of family funds.

Then one or more providers pull a plank away; sometimes even before you’ve managed to get it shoved in in the first place. 

Meanwhile the powers that be and their minions nod sagely and understandingly about the need for routine and continuity in an autistic person’s life. 

What is seldom, if ever, mentioned is the need for routine, continuity and some ‘own time’ in the parent/carers’ life. 

 

From Facebook Archives ...  

was feeling😖 fed up. 20 December 2017 at 09:55 · 

Oh joy! Ferretfingers' enablement officer is off sick so we've been allocated another who has just phoned to arrange a meeting in January.  Only been trying to get his care package and budget sorted since February!

Mrs Leftfoot  Farcical

Mrs Lasagne  Oh that’s awful ,just not right xxx ❤️ 😘

Mrs Poet  How much you put up with...and usually so cheerfully! ❤️ 🌹 💐

Bentonbag  Also the Monday afternoon Allotment Gardening course has been cancelled because too few people have signed up (maybe if they promoted it a bit!!) so that bit of exercise and socialising is lost.  Any allotmenteers out there need a couple of helpers for a couple of hours a week?  We're good at digging stuff out, shifting stuff around, planting and earthing up potatoes in raised beds (looks like the Somme when we're finished) and watering/drowning.

Mrs Leftfoot  You could come sort out my garden, if you wish?

Bentonbag  How many shrubs do you want killed?

Mrs Leftfoot  Weeds.. Lots of them.

Mrs Elswitch  Ouseburn Farm?

Bentonbag  I may ring them ...But on the plus side ... There being no Recycled Art class today the outreach worker took Ferretfingers to Byker Pool (the OW was a lifeguard in Killingworth pool) where he spent one and a half hours "bobbing up and down, he didn't want to get out".  So we have Wednesday alternatives for when Adult Learning Alliance is off.