Body Blows


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.

Then BAM;

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.



Anonymous said…
Hey Hams,
DS is going through oppositional phase at the moment. NOTHING we do is right. Support team have confirmed he is "testing us". That's great thanks, we were wondering what he was up to. Anyways, don't mind me, having a bit of a scaldie time at the moment.
PS Your picture just popped up & scared the bejaysus outta me.
PPS I'm your biggest fan, he he he.
Gracie:) said…
Man o Man this is just shit, but you are not thwarted or if you are its only temporary, can we campaign to stop the cuts??

I walked the MM on Monday too, I bloody missed you again!

It must be the weather my DS is playing up as well and its driving me BANANAS!!!Sometimes I hate Autism.

I think a glass of vino is in order......or the whole bottle.

Chin up.:)
daizy said…
Hi Hammie, congratulations on doing the marathon, you should be so proud of yourself. I'm so sorry that the HSE are going to cut 13% of your home help, you are a true mother, the genuine article and you do not deserve this crap. You are an inspiration to so many people,so helpful and kind. Daizy.
ATenorio said…
hello hammie. i am sorry it has taken me so long to say hello. i have been enjoying your blog nonetheless. i was a teacher of students with learning disabilities before i had my baby, and many of my students were on the autism spectrum. so i can relate to a lot of what you are saying on some level.

i am so sorry about the cut. i wish there was something i could do or say to cheer you. but dont get down on yourself for letting this get to you, we are all only human after all.

hugs to you.
Anonymous said…
Hey Hammie
That is 100% pure crap. As you know we do not get home support (although could do with it). It was one of the few battles I chose not to fight. Having said that I would not like to have it at the expense of another family losing some of what precious few hours they do get.

God my blood is boiling for you..this cannot be allowed to happen. I'm in campaigning mode now and am gonna do some letters and emails. May I refer those I intend to contact to your blog, as I don't know of anyone else who could describe this situation so bloody well and so passionately.

Pisses me right off when I see first hand what is happenin in our local hospital..clerical workers/physios etc. who better themselves by doing management courses and then being handed the job of hospital administrator with the salary to match. After less than a year in the job they go on stress leave - come back and are transferred sideways to a newly created job but keep the same salary. Porters who go sick come back not fit for their job and get a job of taking photos for the id badges on same wages and someone else taken on for their job. When will the HSE take accountability.

A friend of mine working for The Better Value retail chain has been off on the sick for over a year after 2 ops and doc won't let her back as she is not fit to do the job, yet if the bosses agreed to let her transfer to different dept that is less physical(drapery for example)she could return, but they won't. They are not paying her sick pay nor have they employed anyone in her place - everyone else has to muck in - including management. HSE take note!!!

Off on a tangent again sorry. Chin up Hammie, keep battling, am with you all the way...
"I get knocked down but I get up again"...

Best regards
Lisamaree said…
Fr Dougal, Thats a bugger. But all kids go through testing phases. It is a good sign that he is picking on your reactions, not a comfort to you at the moment but shows he is pretty smart!
Daizy, Mammy and Pearl and all the RCs, thanks for all the supportive comments. I get a warm fuzzy everytime I go near the computer lately. That picks me up!
I don't want to play the victim, but at the same time I wasn't going to let them get away with treading on me; If it is happening to me it must be happening to someone else. We have enough to deal with, without external pressures squashing us down. !!

thanks again xx
Anonymous said…
Hi Hammie
Sorry to learn you are going through this at the moment. From reading your supoprtive posts to others and your great blog, I am always pleasantly surprised how everyone agrees with what you write, me too btw. I guess when you write from the heart and from your own experiences there's just no argument. Surely you can appeal and with your convictions I bet you can get there. There are thousands of good wishes behind you. xx

Don't forget the war paint!
Anonymous said…
Wouldn't that tear the crutch out of your knickers! Sods! Maybe this is a job for the media? A bit of pressure from a newsworthy piece might help. Just a suggestion.
Anonymous said…
Hey Hammie,
Been meaning to post a comment on this for a while. I think every parent of a special needs child can identify with all of your sentiments. You really should e-mail this off to a few newspapers and see what happens. I think articles like this might just help the rest of the world to understand the battles that we special parents have to face. Anyhow, good on you for being so honest as always and saying it like it is. You are brill and an inspiration to us all!
Lisamaree said…
Thanks everyone for the support; it really does help.
Holding my cards to my chest for the moment. Will keep you tuned.
Sister Wolf said…
Hey, I found you over at Imelda's place. Hang in there and keep fighting for services for your kids.I've been doing it since my kid was diagnosed 12 years ago at 3 yrs old.

You sound like a heroic mom.

Could you swap childcare with some other moms in your position?

Things will get better!

blessings and xoxo