Thursday, June 5, 2008
I feel a bit thwarted lately.
Just when we thought we were getting our shit together.
Yeah, Bratty is turning into her usual summer devil child self but there is light on the horizon for her intervention. (more later)
Boo is going to be doing some mainstream integration!!!!
(after only 6 weeks in his ABA school)
My big sis is doing well after chemo and another "lady" operation to help stop her B.C. recurring.
And I walked 10 kms in the Women's Mini Marathon on Monday, came home, did a full evening of child duty and woke up the next morning without feeling a twinge.
The Health Service Executive send a nasty little letter through my door saying they are going to cut 13% of my home help. They justified this a week ago saying they needed it for "other parents" and due to budget restrictions (their own financial mismanagement) this was the only way.
I thought to myself when I read that "not this little black duck; let em try!"
But when the letter arrived saying they were taking the full 2 hours away, for each child; it was a real blow. I actually got kind of teary, like my feelings were hurt. And I shouldn't have. I was absolutely cruising before I got this letter. No hormonal stuff happening, but boy did this knock me sideways.
Boo came in from the car (he takes a while as he needs to flap around a bit, pee on the Rosemary and Lavender in the front yard, do some more flapping and testing the echo on our square) He had the yips a bit as the Christmas lights were not working. (That's right CHRISTMAS lights, in June; we do not like change in our household)
And he blew a bit of a fuse over it (pardon the pun)
Now normally I would handle it; hey that is life in an autism household.
If a small thing breaks you run around trying to fix it.
But this nasty little "F.U. Mother" brown envelope on my doorstep had blown my confidence and I just lost it with Boo.
Not fair, I am not proud. I love my Boo. I understand his insecurities and need for constancy. Having pretty fairy lights in the front window is a small price to pay for his brilliance and sense of humor and love.
But I lost it with him and yelled something about it not being Christmas and that he needed to get over it. (I know, I cringe at the memory)
He did calm down, eventually. I went through the rest of our usual routine with him.
But the whole time I was a little tense; a little less able for the stuff that I usually do happily.
I couldn't cope with reciting "Old McDonald had a farm" for the 5th time since I collected him from school. I didn't want to sit and draw pictures of Jack and Jill, or Little Boy Blue. I couldn't multi-task the way I usually do.
I couldn't cope with Bratty's screaming either. I was in the kitchen trying to put together a freshly cooked meal from scratch, rather than a curry or pasta with microwave sauce. And her screaming as she played on the Internet was destroying my head. Bratty screams and whoops so loudly that you cannot carry on a conversation over it. But usually I tune it out. Go into another room or wear my ipod headphones and "get on with it".
This morning she had an issue with a pink dress with a zip and normally I would work through it with her, change the dress, adjust the zip. Listen to what she was trying to say to me by screaming and crying and decipher her needs. But I just forced that bloody dress on to her and made her put her shoes on before ushering her downstairs and putting her in the car. Miserable.
I was weakened by the blow and was no longer able for it.
Score 1 to the social workers hey?
The gas thing is that civil servants can take time off whenever they are ill or a bit under the weather with stress and the pressure of constantly screwing people over.
If I got to take stress leave I would never be here at all!
Because not only had they taken away 13% of my home support, they seemed to have destroyed 75% of my self confidence, ability to cope with adversity and general parenting skills.
I don't expect the girls who do my home help to do it for 13% less money. I can't see how I can cope with 13% less help. The girls already do more than they should for what they earn for working with kids of very high needs. People turn burgers and stock shelves in supermarkets for more.
My Bratty is unlikely to scream 13% less. In fact in the summer this behaviour seems to increase. (Big time!!!?)
I cannot even get them to bed 13% earlier, to sleep 13% longer each night. So I might enjoy 13% better more quiet time with their father, without screaming and whooping in the background or frequent interruptions to recite nursery rhymes and draw cows and ducks and sheep with four square legs and black hooves.
I am wondering if all the staff in the Health Service are taking a 13% pay cut ?
while doing the same job in the same conditions.
13% of a senior civil service salary would go a long way towards employing a few speech or occupational therapy graduates to assist overworked senior therapists in reaching more children.
13% of the senior civil service salary would pay for a lot of home based respite and help for people with kids with extraordinary needs.
It would pay for cleaning up a lot of poo, and sick. It would pay for all the things that get broken and have to be replaced immediately to avoid meltdown. It would pay for a few of the little treats that parents do without so they can afford to look for therapy and tuition privately.
It would in other words improve quality of life and reduce the burden for a lot of very stressed out families surviving on the edge.
It might even save a few marriages.
It would help preserve for a little bit longer, the mental health of people like myself who are getting along okay, for the most part, with the little support networks they have built up in the absence of unconditional family and community support.
The mental health of the front line. Me, You, the parents who just get on with it everyday. Because the alternative is unthinkable.
We even manage to enjoy it most of the time. Have a laugh, share the load, help someone else, get a bit of moral support from someone else doing it too. Take the piss, look for the good in it. Even count ourselves lucky for coping so well.
Until you get a body blow.