Florilegium

Unlike my usual sedentary self, I have been busy, busy,busy this past week and a half. A friend was here from Canberra with her two kids and it was really cool to meet her. I'd known her online for several years. We took the kids to the museum and the art gallery and had lunch at Southbank. She came here one afternoon and it was really good.

Sunday we went to the park to see Julia, K's old aide who was here from NSW. Great to see her and she was excited by the changes in K. He got a bit manic and I got a lot of exercise chasing him. We had a good time with quite a few of the women from childcare there discussing men and whether to look for looks or personality. Stunned them all by saying that G and I moved in together after 3 weeks of relationship.

Monday we went to my parents for a BBQ. My sister was as per usual on form. My aunt had a huge fight with my mother over the stolen generation and my mother ordered her out of the house -- upsetting my mother that much takes some doing but E had been there for some days drinking all day and being aggressive.

M was appalling by the end of the day. he had an agenda in his head he had neglected to share with anyone and got very anxious when it didn't flow. To top it all off, my sister had brought a bootleg of Cat in the Hat and after my father went out and bought a DVD player, she tried to make us all watch it. I think I'd rather poke bamboo sticks in my eyes thankyewverymuch.

Tuesday was a meeting at school about K's OT assessment. Eh. Lots of 5th percentile stuff. Confirmed what we already knew that he is a clumsy little git. The OT felt he had serious vision problems. Lots of pep talk about keeping myself sane while parenting these kids and how to manage schools. Really nice guy.

Wednesday was the OT and PT at RCH. Feh. Apparently making K inflate his stomach will work magic. K doesn't wanna inflate his tummy. Next step a TENS machine.

Went to a meeting at the school where Michael was talking about meds. Meagan came with me. It was interesting hearing him talk about his overarching idea for management of these kids. Overall I have to say we have not managed to keep M stable and that we are constantly in crisis management instead of being able to plan for excellence. Interesting discussion about puberty and how if you have a kid with good self esteem it is much easier to traverse. Turned out I was the only parent in the room whose kids have never threatened suicide =:0.

Cornered Michael at the end and said we needed to plan for when M's meds failed in the next week or so. He called Mel over and she confirmed that M is far far stressier this term than last and while he is using words, he's close to a meltdown. Talked about clomipramine but that would mean a weaning off endep and risperidone and I'm not keen. Michael really wants me to consider strattera. Sure thing! $5 a day! $1825 a year! That's so gonna happen. Talked to my mother this morning and asked her if she could pay for it. She instantly said, yes. We are so lucky with my parents. I'm not planning to use it but it's good to know that if we have to, we have their financial support.

We ended by deciding to trial adding another tricyclic to the mix. Nope, I don't know what happened to OMG we cannot use risperidone and tricyclics together but apparently it's worth a go. He's a lovely raving mess this afternoon although did OK at school today.


Today was the behavioural optometrist for K. Geez. He was
diabolical. She says there is no convergence problem but probably he has a tracking problem. I don't know how much good info we got from the session because he was in constant movement, refused to answer questions and basically was horrible. At the end I asked her bluntly how serious the problem was because I'm not keen to spend $, time and effort on a totally non-co-operative kid. I don't think she wanted him as a client in any case ;). She kept talking about attentional issues. Ooookay. Delivered K to school where he apparently had a day.

Tomorrow I take M. Good times, good times.

Storms in Teacups ;)

Blogs are public spaces. They're public spaces unless you password protect them or unless you use livejournal and lock entries. If one blogs publicly about controversial issues and holds strong opinions and one has comments then one is inviting comments.

And I cannot see what is outrageous about commenting in one public forum about another public forum. Nope, no way, nohow can I see how that is a BFD. Carrying an argument from a blog onto a public email list would be very bad form but merely referring to a public post on a public blog isn't.

Just nailing my colours to the mast here in my own public blog which is read by all comers who may hold different opinions to me and may feel free to use the comments to say so. This being my blog, however, I do reserve the right to delete comments if they offend or upset me. Or even if I happen to think they are tedious drivel ;)

My I suck as a good little blogperson. Very busy, lots happening . Appts every day this week. Last week was busy too. Family dramas, friends visiting from out of state.

Ummm, so later I'll get some coherent thoughts out there.

Jo asks why mixing the two meds is bad. Basically we are mixing two potent medications in a developing brain. It might be OK or we might find out in 10 years time it was a Really Bad Thing to do. I can't find any info about risperidone and tricyclics on line -- there's some info on the old style antipsychotics and tricyclics on line and it's not pretty. Nobody has done any study on mixing tricyclics and the new antipsychotics in children. Tricyclics aren't used much with kids any more because in general the side effects are not well tolerated but we ended up there after he had serious reactions with SSRIs. Now with all the new stuff coming out about SSRIs in paediatric populations, I'd be worried about using them although his side effects were more typical of a bipolar person on an SSRI than suicidal ideation.

Basically we are doing what we have to do and hoping it will be OK. I'd feel a lot safer on either an antipsychotic or a tricyclic but they don't work for him in isolation so we're trading off on a known factor of crazy unhappy child against potential unknown problems in adulthood.

Remind me again why it is not nice to treat my kid like a lab rat?

I know that giving him a cocktail of meds is a Bad Thing. I know it's not evidence based medicine. Mixing a tricyclic and an antipsychotic in a developing brain is not sensible or wise.

But, holy shit, it works. He's been as stable as he gets for the last 3 months. Still major meltdowns at the rate of at least one a day but nothing like the lunacy we are currently enjoying today. Three out of control control-freak meltdowns over trivia where he is unreachable and he is ranting and raving.

I gave up and gave him a risperidone. I can't stand it, I just can't stand it any longer. Either we use this mix or we trial something completely different. What the something completely different could be is beyond me but there must be something that could keep him stable and not a fucking lunatic . He's so upset by his lack of control too. Hell, effexor was better than the endep or the risperidone in isolation.

Waiting on an email from the paed.

So much to do, so little motivation.

The caseworker rang about the fence and needed to clarify if M was intellectually impaired. WTF? Apparently the agency manager believes that children don't get acquired brain injuries and it only counts if the kid is retarded. Weird. Still no decision made but I'm not sweating it. Driving lessons are touch and go but I never expected them to pay for those as it truly isn't a safety issue. bonus if they do though.

I should do gardening and more housework. I should pay more attention to my children. I should contain my horror at learning that Monday is not the first day of term but rather a pupil free day. M is champing at the bit to get back.

Wonder if the postie has been and if we got interesting mail? Fat chance.

Feh. I'm vaguely looking for high schools for M for 2006. There was one local private one I was interested in but holy hell, there's a lot of hidden charges. Last year the tuition was $1500 a year. That's do-able, completely do-able. This year the tuition is $1850. Plus a 'voluntary' levy of $500 a year for buildings. Uniforms would be at least $700 (a compulsory blazer at $180? yeah that's affordable). The school is very new so doesn't have a science lab and in their prospectus they are trying to claim that this is a bonus as 95% of high school science doesn't need a lab. Riiiiiiiiiight. They're also using distance ed for some subjects and that means a subject levy of $400 if you use that option.

I'm disappointed as there were a lot of things I liked about this school -- students could move at their own pace, subject acceleration was totally do-able. However they do not appear to have a special needs policy which probably rules them out completely.

I'm only poking at this issue now as it seems that it's really hard to get kids into decent high schools. My nephew was put down at birth for a private high school (whose fees just make me weep) and had his intake interview for 2006 last month and probably didn't make the cut. Which leaves my sister without a high school for him. ::giggles:: OMG she might have to send him to a public school! The horror, the horror! At least she's in an area where the public schools are not nightmares unlike our local ones. Our local ones mostly focus on programs for teenage pregnant parents and the like. Which, don't get me wrong, is a Very Fine Thing Indeed but probably not what I am looking for M.

I have a terrible craving for crappy foodcourt Chinese food. I might walk up with M to the local crappy place and have some for lunch. He'll be happy if we stop at the petshop and admire the lion fish and the moray eel.

Endep withdrawal was a bust. Now we're doing the risperidone and he was fine until 2pm and then he complained about vicious stomach pains and cried over potentially not being home in time for his TV programs. Gave him 1/8 tab and I will monitor closely today and see if we can get through with none. I don't know much about risperidone withdrawal but he was on a very low dose so it can't be too bad. Can it? OK googled it and it doesn't sound like we're in for a nightmare like efexor withdrawal. Strattera is now available here as of yesterday and I'm considering asking Michael if we can do a trial. He was hoping to have free samples as he did the clinical trial for Australia. I dunno though. It would be an expensive drug longterm and I doubt it would be available with an authority script as there are alternatives. It seems like a lot of kids have emotional lability on it and I *really* don't wanna go there.

Ambrose's birthday. I'm feeling sad and flat although not a total mess this year.

Meagan was supposed to be here all day for respite but has a drama with another client so will pick M up at 2 today and tomorrow. While it will be nice to have both afternoons off, I was looking forward to a full day.

Tried dropping M's tricyclic yesterday. Oy. 40 minutes of sobbing because the bread rolls were the wrong shape. I'd thought he'd blown through the tricyclics as they've never lasted this long before but I was wrong obviously. Ma tried to tell me it was just that he was on holiday, g's away during the day this week and things were different but I think not. Haven't seen this degree of drama since December when we last adjusted meds. today I skipped the risperidone -- I'd rather have him off the anti-psychotic than the tricyclic. So far he's a touch manic but OK. And he can do manic even when heavily drugged so it doesn't mean much.

K went back to childcare yesterday -- we got funding for holiday respite care and he was *so* happy. he came home and told me he hugged Gladys, Margie, Fay, Sharon... I think he hugged everyone in the centre. Breakthrough with him yesterday as well. In the past he's been very possessive about the CD player and about the music. yesterday he went and got a CD he likes, put it on and danced. He said everyone likes this because everyone is dancing. Then it got to track 4 and he stuck his fingers in his ears. Sharon asked him if he wanted to skip that track and he said, no, everyone else is still dancing and likes it. This is major as in the past he would have just melted down but he cared that the other kids were having fun.

I should do housework but I can't be arsed to. The mouse invasion continues. ::sigh:: I will clean that mess up but the rest of the house can just continue rotting.

::pouts:: we won't be going to Hidalgo as it's not on any more! It's had a short run is all I can say :(. Now G has volunteered to take M to Haunted Mansion. Eeeeeep.

I just remembered something I want to grumble about. If nameless somebody asks for specific help to network to a psych or a developmental paed or neuropsych and I take the time to reply, then for Maud's sake don't just disappear into the woodwork and never reply back. I think the people I see rock but I'm not going to be offended by anyone not thinking they are going to be useful... I'm just so over the idea that you get good results from seeing psychs who specialise in gifted kids when you've got twice exceptional kids. There's certainly people I'd love to see in the US but I wouldn't go near any of the people who specialise in gifted kids in Australasia unless my kid was bog standard normal. I spent a lot of money and wasted a lot of time seeing the gifted experts -- we only got somewhere when I accepted that viewing my kids as simply gifted was not working.

Ugh, now I've got a cold coming on. The weather's changed to very autumn-like. I was planning to go out somewhere today if I could think of somewhere cheap and not crowded. As if.

Quiet Easter so far. I bought Easter crap but haven't given it to the kids as neither of them has been particularly settled and I'm not in the mood to add chocolate to the mix. I spent the day in the garden yesterday and it's looking a lot tidier. I need to move a banksia tree which I got as a tiny seedling as it's a biggish tree sprout now and in the wrong place.

Ma was going to take K to the Cat in the Hat but I pointed out that it would be easier to do it with an empty theatre. It only opened here this week so it will be crowded despite the dreadful reviews. I might take M to Hidalgo today if I can be bothered. Given that g is away every day this week with the car, I probably need to make myself be bothered or he will be truly stir-crazy by the end of the week.

This week, I need to ring the GP and find out why M needs to go back for more pathology testing, make an appt for G to get referral to new psychiatrist, make appt with new psychiatrist, make dental appt for me, start cleaning downstairs (joy, joy, joy!), finally read G's ms that he is stuck on and tell him how to fix it (heh), get 2 more fence quotes sorted...

Easter Thursday.

I got married on Easter Thursday 1991.

I buried my first son on Easter Thursday 1992.

This is the first time since he died that I haven't been a cotcase over Easter. I've still got the next week to get through but in general Easter has been the hardest time for me. I still mourn and grieve but this year for some reason, it's not the acute pain I've felt at previous Easters.

I'm making my peace with the school stuff too. They're wrong but there's nothing I can do about it. Today he was sent home with a LOT of homework to do over the holidays. I think not. It sent a signal to me though that they have me pegged as a pushy mother of a gifted kid. ::sigh:: this school crap is hard work.

M cried because it is school holidays and he doesn't go back for 10 days. At least he's happy at school.

The mouse plague continues. I caught one yesterday and Bob the cat caught another one. It's horrifying. There's no food out and I've been laying baits for 3 weeks now. I think the extreme drought drove them into the house. Please Maud, we must be near the end of the infestation.

My house cleaning is nearing the end. I did M's room this week and I will start on the downstairs next week. When that is all finished, I will do the garden. One thing I like about this climate is that it is possible to do one big weed a year and mulch and that's it. In NZ it was much harder work keeping the garden under control. Not that this garden is even remotely under control, there's bushes sprawling everywhere.

On the positive front, I got a call from the insurance company and they found the guy who crashed into us 6 months ago and drove off! Much yayness as it is $1000 to fix the door. I'm very glad that I stuck it out at the police station with the rude officer who kept telling me it wasn't worth her time doing a police report. We had gotten the guy's rego number so I felt it was worth a go.

I'm in a screaming hissy fit. I'm spewing, just spewing. Last Friday R cornered me to ask if I would consider moving K into the first grade classroom. Ummmmm no? I've heard nothing but positive things about him in the classroom until I was blindsided by this idea. R stressed that it was my call and they would do whatever I chose.

They raved about what they could do in the first grade classroom and how they could do so little in the second grade classroom. he can continue to do grade 2 academics in the grade 1 class -- that's going to help him fit in eh? He'll be the best reader and the most advanced at maths but WTF do I know? It's apparently a perfect placement for him because he can learn to follow instructions...

Over the weekend I kicked it around, the pros and cons. I do not believe that K's social issues will be cured by placing him with kids a year younger. I do not believe that it is possible to train the grade 1 teacher to work with him but utterly impossible to train the grade 2 teacher. I don't necessarily believe that being in a grade 1 environment will lead to him learning to do what is asked or follow directions. If it were that simple, we would have succeeded at childcare.

I'm furious. Most of what they are highlighting as issues have to do with his autism, not his social development if that makes sense. I asked what would happen if his issues remain at the end of the year and was told he would be moved to grade 2...

My mother was adamantly opposed to the move as she says he's happy with his current placement so why change what is not broken. G was neutral. I dithered. On Monday I saw Michael the paed and we kicked it around and agreed that there was no good reason for the move that was overwhelming. I am CERTAIN the move is partially driven by the fact that they have K in grade 2 with a one to one teacher and 5 kids in grade 1 with a one to five teacher. Moving K frees up that teacher. I think the other stuff is a smokescreen to get that teacher freed up. Oh and so they can teach K group skills. ::snort::

So today I told R I was opposed to moving K and that Michael agreed with me. I don't want him in a grade one classroom doing grade two academics. I do not believe that things are so radically different between the two classes that suddenly my child is going to change drastically. R hooked Mel into the discussion and it got ugly fairly rapidly. They have seriously considered all the pros and cons and they are sure they can do more for K socially and developmentally in a grade 1 environment. I'm bloody certain they cannot but they are insistent that I have to give them a chance.

Then we had the delightful admission that K is not coping in the classroom *and* he is never in the classroom. So how the fuck do they know? As far as I am concerned he is happy, he is appropriately placed in terms of age and no harm is being done and it is my legal right to determine his placement. they made a valiant attempt to make it clear that they think I am a pushy mother who values academics over socialisation which is untrue. It's just that I don't think what they want to do will work and it is disruptive for K.

That said I am going to cave in on the matter. If I don't, then I will spend the year being told that his issues would be resolved if I had just done what they asked. I emailed Michael and he suggested a list of conditions to be met and a review to be done in the middle of the year. I feel like I cannot win this battle, I think it is the wrong thing to do for him but they need to learn for themselves.

At least no-one told me that these kids all even out by grade 3 ;)