Florilegium

The last few years I think I've been living in a bubble. M wasn't in school or receiving services from anyone as I'd given up on OT and ST so he was at home with me, just being who he is. K was totally beloved at childcare and while there were times that his disabilities were focused on, it wasn't a constant process of being a parent of a child with disabilities.

That's changing or it feels like it is changing with the kids being in the unit. I found out last week that I qualify for a disability parking sticker and that made me feel even worse. Dealing with Commonwealth Carers to get funding to go to a conference was painful. Dealing with nameless org to get the fence money hurt. Being told that from the outside looking in, we're probably a shoo-in for major funding if I get more barebones honest about what is going on, really really hurt.

While I'm glad to get the extra support and money and the like, it's a bit of an issue for me accepting that this is necessary. I think the Pollyanna part of my psyche was expecting to arrive at a place where the kids were OK and it's painful that hasn't happened. I can see huge improvements in both of them, I can see that K is closer to recovery than we had any right to hope for. But and it's a big but, it's still really hard work parenting these kids and as they move out into the world, there is a lot of pain associated with hearing how other people view them. I know that some of the stuff that is being assumed about M is plain wrong and I hope that with more time being spent with him, Mel will see that.

I was reading on another blog the theory that parenting kids with special needs is not a grieving process. I disagree. I think it is a grieving process but it is an open ended grieving process. The little deaths never end. Achieving resolution just isn't feasible. I grieve for Ambrose still but the pain is finite YK? I know that he is dead and he will always be dead. M and K, I never know what I will be dealing with next, what dream is going to be crushed next, what new issues I am going to have to find solutions for...

Thanks for the comments and hugs. I really hit rockbottom last week. April always is the cruellest month too as it's the anniversary of Ambrose's death so I'm at my emotional best. Not. In a moment of brilliance I scheduled oral surgery for April (I guess things can hardly get worse eh?) but I'm going to float it over to May as it's not a crisis situation. April is already full of fun things like school holidays and G having to do a stupid work search program because a fraction of his income comes from welfare. Gotta love the way that if you get any welfare income here, you're expected to do the full welfare crap. It is a waste of taxpayers dollars IMO.

My baked potato burst in the oven tonight. I was sad.

Started K on the liquid compound dex. Eeeeeep. Yesterday really sucked, esp as I was here without G as he was working. My parents dropped by to pick up M and my mother said to K, don't say goodbye so he cheerfully said goodbye and I said, he's been contrary all day and this little voice floated out, I knooooow, I knooooooow.

Today's a touch better but I'm thinking it's not really an option for him. Several meltdowns.

Got the first fence quote and might soon strangle G. I want a basic fence quote and it's got things in it which I never asked for like new gates. I have no idea how to handle it with the neighbours. They've resolutely ignored any approaches to discuss the fence in the past. I'm thinking I will send a registered letter telling them when we need access to their land so the fence can be built. Alternatively I could just make G go over there and talk to them. No intention of talking to them myself as they piss me off. they know it was us who reported them to the council for running an illegal spraypainting business in the backyard. Dear lord the stench was horrendous and it took us all one summer to get it closed down.

Yay, new fence without gaps! Boo, horrible neighbours! they should be nice as they will be getting a free fence without having to contribute money at all.

I am so fucking tired. Absolutely tired to the bone with no end in sight. I'm having trouble accepting that the kids are at school and soon will be at school for longer and that there will be time to do everything because at the moment all I want to do is sit in a corner and cry.

Today sucked really. The worker from nameless govt org came to discuss nameless funding and other nameless funding. It looks like we will qualify for $5000 to do the fences but she was really pushing me to do an escape proof fence for K. He doesn't need it now but he very well might in the future. I'm racking my brains as to how to make the fence look good as it would go in a weird place designwise.

We talked for about an hour about the on-going funding application that wasn't approved. Apparently we scored very highly but not quite enough. We went into great detail about how to improve the already excellent application and it was gruelling. It was obvious to her that I am very close to total burn out and if I burn out there is nobody to look after the kids. With the best will in the world, G couldn't do it. Apparently I have to stress that if I lose it, then the kids go into institutionalised care. Lovely.

But it sort of raises the question of how did I get here? How come things are so difficult? Why is the situation so complex? I've sort of travelled along for the last couple of years nodding and smiling when people tell me things are bad and how do I cope but I think I sort of numb over most of the time and I manage to keep at bay just how demanding things are and how hard it is to keep life together around here. When the worker got some answers to some of her questions, she said that she is not allowed to help clients with their applications but in my case, she was going to give me some clues because she felt like crying at what I am dealing with. Hoo boy that made me feel terrific!

M's doing well at school, he went for 3 hours today and held it together. Yesterday he got to go to a cannery for vocational ed... ummmm I really hope he's not inspired to aim to be a worker in a cannery factory ;)

Eh.

This week I need to go to a meeting at the school to discuss M and his needs. Change the meeting time with the woman from nameless org who is coming to update my funding application and to discuss whether they will fund a new fence. Ring gastro and cancel appt. Chase up physio and set an appt. Email paed and discuss whether compound dex is going to be a better option than dex which turned into a disaster. Ring dentist and find out when my appts are because I lost the piece of paper. Organise new psychiatrist for G. Pay tax bill.

Are we having fun yet?

Gacked from dargie

So, say you were meeting a new person - blind date, new friend, who knows. And you wanted them to have some idea of what kind of person you are, and who you are. But you can't actually tell them in so many words. Instead, you have to give them a box, with a dozen things in it for them to ponder over.

What would you put in the box?

1/ a piece of blue and white china
2/ a Dorothy Dunnett book
3/ my wedding ring
4/ a piece of GF chocolate cake
5/ Jim the cat
6/ a photo of my kids
7/ a bottle of lavender essential oil
8/ The Australian Style Manual
9/ a piece of Crown Lynn china
10/ Ambrose's memory box (is that cheating?)
11/ a Cecile Brunner rosebud
12/ the mille fiore candle I've carried around for nearly 20 years and which recently melted and flowed off the bookcase

I am doing battle with my house. The one little cute grey mouse who was visiting the mousecage appears to have invited several thousand of his friends to come and live here ::sigh::. I convinced m that the mousebait was in fact cockroach bait.

Standard disclaimer about cockies -- where I live they are endemic. Everybody has them. We just call them what they are instead of calling them other names like the people in Florida do ;).

I hadn't actually done much housework for several months other than bare survival mode. I'm thinking I could get used to this way of life where I actually have time to do things. I might even wrestle the garden into control.

G wants a BBQ for his birthday but he didn't get organised to invite anyone until too late. If one has busy interesting friends, then they tend not to be available at a moment's notice.

M's settling well at school and we're meeting next week to discuss extending his hours. As expected all the work is way too easy but I'm intrigued to see that he is producing some written output. Hitting a few snags with K as the charm of school wears off. He still loves it but we're seeing some boundary testing. This week he was echolalic. I wrote a social story and told Rebecca to get more strict with him and it worked like a charm. He's doing well academically and has jumped a few more levels with his reading. It's disturbing how easy the work is for him though. I think once he's more socially functional in school, it's going to be scary what he needs academically.

I'm trying to organise my thoughts on testing and giftedness and what it al means really... I've moved so far away from seeing M's difficulties as a result of his extreme giftedness but I think I may need to be braced that it's going to come back into the equation now he's in school. Undoubtedly if he didn't have the LDs, he would need to be in high school now to be learning anything.

I thunk some more deep thoughts but they're escaping me now.

Back to the housework!

::Blows dust off blog.::

Quite a bit happening here. M's begun at school and loves it so far. of course, he's only there an hour and a half a day so it's hardly taxing for him.

Getting a lot of pressure from school about K's meds. I'm undecided. He's had so much going on in the last few weeks that I'm not convinced that it's a med issue. Surgery under a GA, M starting school ( which did not thrill him at all), extreme weather, stress between me and G.

Met with the gastro yesterday. I really like her (even if she did forget to sign the prescription. Twit). The biopsy showed that Hirschsprungs is not an issue -- I've relaxed on that since she explained she didn't do one biopsy but a ring of biopsies. v relieved to rule out Hirschsprungs. We're back to a behavioural model that he simply doesn't recognise what's going on and will stick with that for a few months before doing more invasive stuff if warranted. Talked with the OT today and I'm not keen to drive all the way to RCH. She basically offered what I am already doing and was horrified when I said under no circumstances would I do a reward program with K. BTDT and it's not fair on him. The moment he is successful, he can have the moon ;). She's going to talk to the PT and get back to me if they can offer anything which is acceptable to me.

We've got cyclone type weather today with lots and lots of heavy rain. The roof is leaking ::sigh::