02 May 2013

Autism, hope, help and useless governments

Yesterday, there was a piece in the news about a woman who dropped her 19 year old autistic son with the government and left. Oh how I feel for her! What a heartbreaking decision that must have been. She had no hope left. And no resources to give her any respite from it. I suppose she clings to hope that this will be a better situation for all of them. I am praying for her. And all the parents and caregivers who are at the end of their ropes. I'm voting for the NDP, because they promise more help than anyone else. And I'm writing to everyone who might be able to help.

Here in BC, the situation isn't much better once your child turns 19. There's no more autism funding. There's $905/mo in disability welfare, that you can use as you see fit (this is assuming the 19 year old is unable to manage his or her own money at all, like in the case above where he functions at the level of a two year old). Depending on the person's needs, that may not cover even a quarter of what is needed. It costs me and the government combined (my own cash + autism funding + respite + distance ed school disability grant) about $3500/mo for Crackle - my most seriously disabled child. When he turns 19, his needs will not change. But we will lose all but $905/mo of his funding. Here's hoping his needs change considerably by then!

Crackle has been particularly loud for a few weeks. The kind of loud that makes my eardrums throb by days end. Not exaggerating. Days like these are the ones that make me truly understand how someone could lose it and say "Enough. I cannot do this any more". But I have hope. And he's only 7. And he likes to cuddle with me in the morning. And he's learned to kiss me. Hugs me when I ask. And even when he's screaming, he's happy. I think.

Yesterday, the woman who spends 6 hours a day here quit. Gave 30 days notice. Eep. The day before, my strata voted for a $20,000 levy from each unit so that we can do major renovations. That's right. I have to come up with Twenty Thousand Dollars. By June 3. The whole summer will be filled with renovation noise. Crackle loses it when the gardener mows the laws. Or when the vacuum is running. So, we will have to go spend time in the forest. But... the SEA quit. EEP. And to top it all off, my ultrasound revealed that my already serious gallstone problem has developed into intrahepatic dilatation (the stones may be backing up into my liver) and so I'll probably need surgery sooner rather than later (or never, as I had planned). And now there's no one to help.

Furthermore, I promised Snap a trip to VidCon in August (already mostly paid for - non-refundable) and I'm going to the Son-Rise Maximum Impact class in October (already half paid for - non-refundable, but possibly delay-able).

So, if you're the praying sort, I could use a few prayers. I don't think that God just drops in loads of cash, but maybe God could nudge some help my way? Hint hint, Old Dude In the Sky! Or Pretty Lady in the Forest. Whatever you're calling yourself this week.

I still have my hope. But I'm rapidly running out of patience. :)

x-posted to No False Hope (I don't usually x-post, but this one fit both blogs so well, I couldn't figure out where to post it and figured both would work nicely)