Monday, July 9, 2018


For literally years, I procrastinated filling in the form for the carer's allowance grant that's available to people with children with special needs.


Despite a friend who'd done it giving me her form and family impact statement letter.

Despite being unable to afford basics like health care and mental health care.

I finally got it done and posted it off in April of this year. I stressed about it, about leaving it so long and losing us money, about not filling it in well enough. About the fact that at the moment it only goes up to 16, and now my daughter is 15...

A couple weeks ago I silently begged for one big, good thing. Something good to happen to us, something encouraging. A lottery win, Olivia coming out of her zone of self-protective self-destruction, the grant being awarded us.

Today, finally, the envelope. A Yes!

With backdating for the maximum of six months, the annual respite grant, and the monthly allowance (including a Christmas bonus). (And free home insulation, after a long wait!) We get a small lump sum, because of the backdating and respite grant. Respite's not an option for us, but oh... we need this so much. There will be dentist visits for myself and Bodhi, and counsellor visits too, for our shitty anxiety and miseries. 

The plan was to build a small log cabin house outside for Axl - but he suggested it would make far more sense for it to be Olivia's little apartment. We were going to have to borrow to the max to do it, but now, with this, we can build it, and still borrow a bit to make our shitty bathrooms into normal human people's bathrooms. And we can turn the heat on in the winter, as the boiler hopefully won't bother her, or the heat, and we can clean out her room, and let Bodhi have it a place of his own, space for his stuff, friends to stay over.

And Olivia can have a space of her own, that feels private and safe - we are in the midst of a crisis - she found out I'd been in her room, killing moths (she was lying about a moth infestation). She reacted very badly, and has not been out of her room since - in the great heatwave we're having, with her zero heat tolerance. She's barely eating and drinking and seems to think she can stay in there forever. It's irrational and self-destructive, but she blames it all on me. Her solutions to her problems cause her incredible suffering, yet seem more rational to her than, say, facing the pain of having a shower.

I hope this will bring her joy and a sense of safety again. Nothing is simple, of course, there will be a host of sensory issues to contend with... but it's a good solution.

I am so grateful. Something worked. Perhaps more luck will follow. 


Ms. Moon said...

Oh my god, Jo. I am so glad you filled out the forms, so glad some help came through. Maybe having her own little place will help. I hope so with all of my heart.

Sabine said...

Good on you, hope it will all work out.

Laura said...

As a fellow procrastinator par excellence, I am so very happy for you!!! I hope your current crisis resolves soon, I imagine
it is terribly stressful.