Florilegium

Oh and the new respite person just didn't turn up today.

There are no words.

Tired as usual. Michael let me know that the unit had requested M's records on Thursday so we're a bit closer to admission. I just feel sick and heartbroken at the whole prospect. Had nightmares last night about how bad it was and how he only got accepted to a day school admission where he was perfect.

he's not good. There are periods of time where he is OK but overall we're still seeing muted rage attacks and he's manic in the evenings. He went to school yesterday for the afternoon and held it together but was brutal to his brother in the car on the way home.

I went to the city with Ma and we wandered around. Walked over the Goodwill Bridge. Went to David Jones and to Lush and to several bookshops. I went and did some household shopping with her after deciding I didn't want to get home in time for the school run. I think there's enough food here to cope for a week if he's admitted.

I really hate and detest waiting. I'm OK as long as I have a date but this not knowing is driving me crazy. Every time the phone rings I nearly vomit. I even put our mobile numbers on the answerphone -- I hate my mobile phone and virtually nobody has the number.

I did some housework this week so I guess that's a minor indication that things are not completely falling apart. M's not good at all. He's still cycling even at an increased dose of depakote. Very irritable. Did I mention irritable? Threatened to kill his brother yesterday when K asked to play Action Songs in the car. While I can sympathise with the sentiment I still wasn't thrilled.

We've agonised over the hospitalisation issue -- Ma was convinced last Friday that we didn't need to do it. First time in my life that my father listened to me and told my mother she was wrong. It's all academic now because I'm not managing to get him stabilised much if at all. I'm just waiting for the phonecall. I'm supposed to go tothe city tomorrow with my mum and I'm sure it will come tomorrow just because of the maximum inconvenience.

He got a bed at the Mater some time in the next fortnight. I just lost it this morning when he went off at us all and emailed Michael and said, enough, I can't cope any more.

Thanks for the kind thoughts guys. We're not doing much better today. We all got up late and I was doing the martyr thing which becomes me so well and saying I wouldn't go to the market to buy plants for beside the pool and then came to my senses and decided to go.

I bought a variety of cordylines which pleased me. G picked me up and said they look like pineapples..... ummmm what? I'd shown him the cordylines in the front garden, talked about what I planned to do and it came as a complete surprise to me that he was expecting something different.

What he was expecting was one of those shrubs which might grow to tree size and then again might not, that has dark green glossy leaves which might be this big or then again might not. He doesn't know the name of this plant or where I could see one. Anyone who does know what the fuck he's talking about, feel free to enlighten me. And him. Fool of a man.

M was difficult in spasms. Emailed Michael who said he thought we were making progress. No idea how he managed to extract that from my email but no doubt he wants to encourage me to hang in there. Or something. Possibly he would like a plant with glossy green leaves too.

Doubled the epilim/depakote. He's absolutely manic tonight, drove his father to lose his temper which takes some doing. I can do it in a matter of minutes but I've had more practice. It's like he can't leave any of us alone and has to push and push and push until someone blows. I hope he sleeps tonight because I'm past pulling an all nighter with him. I was hoping to hold the meds at a very low level but if we're waiting and waiting for admission then there's no point in him being half medicated. Withdrawal will suck the big one no matter what.

I am so tired. So bone-tired and broken-hearted. I don't know how to make sense of all this. I'm doubting myself as a parent, struggling with how to manage M, and past exhaustion.

A lot of what is going on doesn't make sense to me. One day he takes the depakote and is functional, next day he's totally sedated. We're dealing with awful behaviour. K's behaviour is going down the toilet as well ::sigh:: Spent the afternoon at school on Friday because I needed to monitor M's med reaction and oh my. K is the pet of the unit. He's charming and bludging his way through life. He's getting away with behaviour I'd rather see addressed. He's also working very hard at winding his brother up and yet he's probably using his echolalia to manage his stress. Really hard to know how to manage it.

I've been going round and round about the hospital admit and I'm now committed to it. if we do a planned admission, then if we ever have to do an emergency admission we will be familiar with the system but most importantly I don't feel that we are getting control of his cycling. He spent the afternoon with Meagan who was alarmed by his cycling from morose to manic.

I keep kicking it around and feeling like if I were a better mother then we wouldn't be facing this but I am totally at a loss. I don't know what to do any more.

I know it's probably not good parenting but geez I am tempted to clout M. Day 5 of the mood stabiliser and while his mood is stable it appears to have stabilised as negative, depressed, bored and sour. He's sleeping about 16 hours a day and is unable to read or watch TV or do anything except pace or lie in a pathetic heap. I'm running out of saintly mother energy and just want him to do something, anything!

The whimpering is getting on my nerves. Dear maude I want this med to start working properly or a decision made to trial something else!

This week's truly sucked the big one. M was up and down last weekend with the reboxetine. He stayed home on Monday and we went to the paed. Kicked ideas around and came up with the plan to stop reboxetine and do a week on dex and risperidone and then a week on risperidone alone and then start strattera the following week.

We talked about admission to the psych unit and I was very clear that if there was to be another trial of SSRI meds it was to happen in hospital because I simply can't do it again.

M went back to school on Tuesday and held it together OK but was *awful* in the evening.

Wednesday was my dental surgery. Blech. I was convinced I would probably die under the anaesthetic but I didn't. I came round from the anaesthesia much earlier than expected which meant G wasn't there which upset me. The pain honestly hasn't been that bad. I came home, had coffee for the caffeine headache. vomited a lot of blood and eventually felt OK. Took codeine for a day or so but mostly nurofen's been enough.

M was diabolical on Wednesday night although managed at school. I'd increased the risperidone.

Thursday's a blank. Friday he went to school in the afternoon after a hideous morning where he was really depressed. No more suicide threats but he was really cycling. Manic one minute, weeping on the floor the next. I rang Michael at 11am asking for an urgent call back and he finally managed to ring me at 6pm. he agreed that M was cycling and conceded that we probably are looking at bipolar. First suggestion was to take dex out and see if that improved his mood and then to start epilim/depakote if it didn't. He's still chasing up admission to the psych unit for stabilisation if we need it.

I was devastated. My mother looked like she was going to collapse. I was at my parents when he finally rang me. It's been coming for so long and I knew I thought he was bipolar 2 years ago but it's still very hard to cope with emotionally.

Saturday was not particularly marvellous. We picked him up at 11am and my mother couldn't decide whether he was manic or not. Manic it was IMO. By midday I'd had enough of this shit and I started the depakote. he was a bit more stable but he got into his hunt and harass K mode. Ugly stuff.

He got up this morning and has been pretty stable all day although very distressed by the hiccups. His attention span is all to shit and he's having problems entertaining himself and can't concentrate on anything more intellectual than Calvin and Hobbes or the Far Side.

G took K to ride buses and he was very happy all day.

My mouth hurts and the missing eye tooth is driving me insane! I don't regret having it pulled because I can't imagine coping with a root canal.

Dear lord, I'm now praying for some stability. Even as a stone cold atheist, I'm praying ;). I cannot do this much longer without some relief. It is heartbreaking to watch your beloved child go through this.

Today we're suicidal and so depressed that we cried for 2 hours straight. Major dramas with the new Sims Deluxe I bought him and the Sims Vacation I also bought him in the hopes he would play that all day and not sit around in a morose heap but of course they wouldn't run on his computer and he would not let us try to fix the problem.

Did I mention I'm tired?

Talked to the paed and we think that as cautious as we were, we've taken the dosage too high too fast so we're going to scale back to 1/4 tab every second day. He's going to get some second opinions and also see if there is any way we can get M admitted to a psych unit for a month and stabilised. I've got to try and write up M's whole medication history. Lucky me. It's not written down anywhere because we've seen so many different doctors and I know Michael's notes aren't complete because there's been a lot of emergency stuff done on the weekend and he's not written it up.

Gah, I didn't give M 12.5 of a mg of risperidone. I gave him an 1/8 of a tab which is tiny.

He was very depressed today and unable to engage with much. I think I took the risperidone up to too high a level. We'll get the hang of it soon with any luck.

Went over to Tracey's and picked up the supplements for K. She's so generous. She spent a lot of time sourcing these and still sells to me at cost price. the difference between the HFS and cost price is phenomenal. her baby is adorable.

I've had 3 hours sleep. I'm in a pissy mood altogether. Took M off the risperidone on Tuesday and he was OK that day, but he was not OK yesterday. I gave him a second reboxetine and I think I achieved rebound in the evening. Rolling on the floor screaming, refusing to eat. Fun times, fun times.

He played a few board games with G and was totally wired. Went to bed at 9, I went to sleep for about half an hour, was woken up by morons watching the footy over the road who were whooping and hollering ::kill, kill, kill::, went in checked on him.

He got increasingly belligerent and refused to even try to sleep. At 1am, I gave him about 12.5mg of risperidone and he was sweet when I checked on him at 2am and he went to sleep some time after that.

So I think he still needs the mood stabiliser. I'm not seeing any huge screaming reason why this is such a bad thing. I'll retry the risperidone withdrawal in a few weeks when he's been stable for a while.

K got up at 5am. Just shoot me now OK?

Day 3 of the reboxitine and he is angelic. Happy, easy going and just great. of course there's a recurring pattern of day 4 turning to custard so it's a watching brief. He's nauseated and having trouble eating, poor dot but that should pass soon.

We went to Angie's engagement party yesterday and it was a great time. Angie was married to a guy who had bipolar and there were some terrible times for her in the past. He jumped out of a plane sans parachute a few years back which was horrific. She lost a lot of weight and went on a manhunt and she's caught a keeper. He's lovely and it's so great to see her with a good guy. The party was nice, caught up with a few people and ate good food. M was beautifully behaved, K, not so much. Saw Julia who is thinking she isn't moving back to Brisbane as her ex is moving into her granny flat in W.

Today was OK. G had to go and do stupid jobsearch stuff. He gets a fraction of his income from Centrelink and for that he is required to do fulltime jobsearch. We're not yet ready to ditch it. I was massively pissed off that he was sent a letter saying he had a meeting on one day and later we find out out it's a 4 day course. Gah. Waste of taxpayer's money too. I dunno how many times he's had to go and learn how to write a freaking resume. As if.

K and I walked up to Woolworths, posted some letters and went to Aldi. Aldi's not all that stunningly cheap that it made sense for people to be queueing for 3 hours when it opened last week. I'm going to try and get a $249 monitor on Thursday as this one is slowly dying. Did get some Nando's sauce for a good price.

Watching someone on a mailing list talk very glibly about adopting kids with ODD and RAD. I dunno. Maybe IRL she's got more depth and resources than she shows on an email list but I don't get the feeling that she truly comprehends what it is like to be with a behaviourally disordered child 24/7 let alone two of them. Some days I feel like I have PTSD and my kid is OK for some of the time when his meds are working. I'm stretched thin most of the time. Part of me is always on alert for an outbreak of rage and chaos and my kid doesn't have RAD.

Not too bad a day. Bought Angie's engagement present for tomorrow, went to Browns Plains library and got a good stack of books. Picked M up 10 minutes late but he was managing. He got snarky because I wouldn't let him go straight out again with his father to buy some lego but it was resolved quickly.

G took him to buy the lego and it got ugly. I'm undecided whether it was the meds or the lack of lunch. I thought they were heading out for about 20 minutes but it took over an hour and a half. He melted down because G wouldn't lend him money to buy lego (it's getting old how he borrows money and never pays it back and we now have a rule he can only buy it if he can pay for it unless it's a bargain of cosmic proportions with a time limit). Came home, was rude to K, apologised to K when I told him to, ate lunch and was just fine all afternoon. So we seem to have a seamless switch in meds but of course we've been there before and I can't relax for several days.

K and I planted a potato in his vegetable garden. the rocket's flourishing, the tomatoes are looking good but I think he loved the cucumbers to death. He's horribly shrieky at the moment and I wish we hadn't run out of his multi-vit.

Was cook again today and it was easier as I wasn't making bloody chicken fried rice. I did have the pleasure of cleaning out the fridge after the mince had leaked all over the vegetable bins. Ack. I looked at it yesterday and thought really should put that in a bowl Ooooops.

Names of note at childcare -- Wisdom Wonder and his brother Brilliant. I'm thinking that Mahboobe will appreciate a name change before he starts school too.

M had an OK day, went to Redcliffe with Meagan and wandered around. She said that he was noticeably more distractible. Start the new med in the morning and see what happens I guess.

K was screechy today. Must chase up his multivit as that the only thing I can think of as the cause. We went up to the plaza shopping mall to put in a medicare claim and he nearly got killed in the carpark by these jerks who were pulling out and fully aware I was having trouble keeping him close. Jerks. The medicare claim was irritating too. I was putting in our registration for the $300 threshold and she was very rude about what numbers I needed to put for the kids (it's NOT clear on the card who has what number) and then I had to harass her into doing the claim before she did the refund. Grrrr. $60 is a goodly way towards $300 and then I get the bulk of the claims back.

Centrelink haven't paid my last round of allowances either. There are no words. How can automated payments just suddenly all fall down? Especially when there are 3 and they all have different requirements? It always bemuses me when they don't pay my carer allowance which is not means tested and which would need my kids to recover from autism for me to lose. Need to write them a letter so that they do the backpay thing. It really gets on my tits that they will discontinue payment but not send me a letter saying why they did it. I only find out when I go and check balances. Last time they did it was when some drone decided G's yearly income was his weekly income. If only.

Tired. I worked at childcare being the cook today and man I ache from scrubbing pots. I made chicken fried rice and I managed a magnificent thick layer on both pots of burnt crap which took mega-scrubbing to get off. Bah.

Meagan came and took M to a indoor playspace where he was totally calm and collected for 2+ hours. ::boggle::. I'm not understanding why this med withdrawal is so freaking easy and why he is so calm and easy. Hmmmm, I'm considering increasing the risperidone for a few days and seeing what happens. Horrible screaming Aden was there from school and M commented that he can't decide who is more annoying K or Aden. Aden hands down.

The guinea pig palace is nearly finished. It's a two-storied edifice so they can dine on grass and then scurry up their pipe when we wheel it around. Daft, bloody daft. Not what I had in mind when I asked him to fix the decrepit one he built a few years back.