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Maz, Christy and Lulu gather around Tan and put the gold foil "newly diagnosed super mummy" crown on her head, and pass her a showbag containing Bath Oil, ear muffs, a copy of "the out of sync child" and bottles of Vodka, Scotch and Bourbon.
Welcome to the club Tan - it ain't all bad, we promise.
:hug:
hey girls sorry ive been missing in action been so busy with bella and tryin to cope with murray i hardly go near the computer
hes starting daycare again which is a life saver we have regression in toilet training and behaviour which started after bella was born
he has his assment with the lady for early intervention on monday i hope we can finaly get it started only taken awhile
Another odd difference between the two kids that may or may not mean anything - DD#2 is really good at singing along to songs. She knows heaps of songs off playschool, sesame street, wiggles, advertising jingles etc and will sing along to anything on the radio after the first verse. She keeps in time and tune quite well.
DD#1 had a brief tuneless dalliance with twinkle twinkle little star when she was 3 but otherwise has always just made up monotonic wails rather than singing existing songs. Sometimes she hums discordantly to the tune of TV shows.
But I guess I could put this down to a total lack of musical aptitude rather than anything more ... despite this being her 3rd year of piano lessons ...
Hey Elf - one thing I have learned is never to compare children. Second thing - never compare Aspies! They are all so different, but the way they play or do things can have alot of similarities.
DS is pretty attracted to all things warlike, weapons, guns etc *(despite my hatred of same). He often issues HORRIBLE threats to me and I must confess my relief when Christy visited here one day and Matilda said almost exactly the same horrible thing to her (sorry!, *snicker) - why the violence lol?
DS never really got into television until he was older. He really likes music but likes it more if he knows the words - then he is unstoppable. I also can't vacuum when he is home - but he has the loudest voice and makes more noise than any child I know...
Good to see you again murraysmum - hope you get some respite soon xoxoxo
Has anyone noticed how well the siblings of these kids deal with it ?
In the holidays I watched Jovie (Christy's DD) calm Riley out of a meltdown!!! She is so calm at dealing with things and so good that she talked him down (I am in awe of that child!!) I also notice that Erin my DD is fantastic with the super kid in my class because she has learn to cope with R.
Awwww mrsmac, thanks! She is very good with super kids. She tends to just get them as well, probably like Erin, but JJ has known no difference. Thats always been her life.
RumpledElf, my two DD's are completely different, but M (who is autistic) can hold a very good beat and sing in tune. Both DH & I are musos so maybe she's got some of that in her as well. Some autistics can't talk, but can play music... DD2 loves music, but can't sing in tune at all.
I have trouble *not* comparing mine as they are so different it is actually hard to find anything they do that is in common! I swear they both grew up in totally different households with different parents. Partly true given that I moved in with my partner when DD#1 was 4, but still ...
DD#2 is great. She organises DD#1, who has this thing for never doing things twice the same way or putting things in the same place or following the same steps to do something and thus is perpetually disorganised and losing things. The rest of us in this house have habits and routines and only lose things when we put them somewhere different.
We had a suspision about DD#1 confirmed last night. She likes food based purely on texture not taste - we had some very spicy sausages for dinner last night from Coles, where we usually don't shop so we'd never had them before. She went on and on about how soft and juicy they were, when we were bracing for her to complain about the pepper. She complains no end about some sausages we get locally that taste very similar (a bit less peppery though lol) but are very firm. She claimed she couldn't taste any pepper at all in them, despite it being by far the strongest flavour in the sausages. She'd fail the masterchef tasting challenges - she can't tell beef/pork/chicken/lamb apart with the exception of roast chicken or chicken pieces that are clearly chicken-shaped. She seems to use complaints about the taste of something if she hates a food for no particular reason (ie, hates the texture) but will happily eat the same combination of ingredients if it is cooked in a different way to give it a different texture. Drives us bonkers so we basically ignore her opinion about dinner since it is so hard to predict what she hates and what she doesn't hate when our brains are wired to think in flavours not textures.
I'm the same on textures too, so I get DS in this regard - poor kid!
mrsmac - DD spends most of her time stirring DS into a meltdown....
We tend to make really nice tasting food in this house so it is horrible when 3 (or more when we have guests) people are sitting there waxing lyrical about how delicious the food is and the 4th is there whinging and complaining about how disgusting it is :angry:
It often escalates into an argument or more, like the time she hit me a few weeks ago. That was over bread.
We really do need help with conflict resolution in this house. It is argument free bliss when DD#1 is away. Even DD#2 is starting to argue with DD#1 because she is so illogical. Arguing over simple things too, like we buy chocolate or something nice, give DD#2 some for her and some to give to DD#1 and DD#1 refuses it, which gets DD#2 very upset as she doesn't understand. DD#1 started arguing with me yesterday because I said I didn't know what we were having for dinner and she immediately started interrogating me as to what we were having and point blank refused to accept 'I don't know, we haven't gone shopping yet, stop it' MULTIPLE times (voice getting more raised and annoyed each time) as an answer. Thankfully that one got cut short as she had to go to school. I wish she had an off switch I could use instead of having to yell 'STOP IT' at her 10 times to get her to stop. And its not just arguments that I can't stop by saying stop, she does it on her bike too (and then rides smack into something), or in other dangerous situations you need her to stop Right Now. I've had to physically stop her quite a few times. I dread her being old enough to want to drive ... she'd ignore the instructor completely and drive into a truck.
Her latest school report for ONE subject actually agrees with me though! 'doesn't listen or follow instructions' and 'talks too much' - its not just me! The ONE subject at school that isn't academic but has rules the teachers are actually noticing she can be a pain and aren't falling over themselves fawning at how smart she is!
She's also not very good at maths but we've known that for a long, long time. Maths has right and wrong answers. You can't re-order things each time like you can in a language-based subject, or just make up your own creative answer and expect a high grade for being different. We stopped playing maths games with her at home or in the car some years ago as she didn't like to actually answer the puzzles and we'd get into arguments with her.
Oh and her school reports at the old school used to constantly bring up conflict resolution as something she isn't good at (clarification revealed the same issues as at home - she is right and needs other kids to agree with her Or Else), but it hasn't been picked up yet at the new school, probably because there's more students to supervise and she hasn't yet done something as dramatic as sock another kid in the face and give them a split lip like she did at the old school. She's the pretty, smart kid. She can do no wrong. Grrr. They'd come down harder on her if she wasn't the #1 kid in her class and I still can't forgive her last teacher for saying she was the #1 WITHIN EARSHOT. Kids don't need to know that kind of stuff. Parents don't really need to know either ... there's more to life than academia.
ok Ladies I have managed to fill out forms etc and lodge with centrelink. I have been accepted for Careers allowance but not payment, and am now protesting that they back payed me 2 days instead of 12 weeks. I had to wait for reports to come in so it took longer then there period, but this was not explained to me.
In the process now of registering for Disability SA and am still waiting on a report from an assessment we had , its been over a month now and I am growing impatient.
The reasons are:
In 2 weeks Hamish will get a new teacher, without the reports and the help of Autism SA there is no support in place for him at school.
His behavior this week last week has been really bad, he has received steps at school every day last week. At home he has been unable to concentrate and has started pooing his pants again.
So basically I am trying to jup through all the hoops i can but my hands are tied till we get this report. I am wanting to book Hamish in for OT and was hoping the back pay would help pay for a bulk lot of visits,,,,,,,,,,,grrrrrrrrrrr
I thought that getting the diagnosis was the end, but in reality its the start of another roller coaster ride.
Sorry for my rant, I am tired and feeling yuck today and a little helpless. Trying to look after my other children as well as Hamish. Its lik I have two toddlers at the moment...
on a side note has any one had any success in a change of diet etc...
Whilst Riley isn't ASd only sensory I noticed a big change when we removed 320 from his diet, it really effects him but most of the other failsafe stuff he didn't change much.
We have virtually no additives in food in this house so there isn't much to change. I'm allergic to a common additive so we make most of our food from scratch. Both the little monsters go monstrous when you give them lots of sugar, no surprises there. If we could work out our quirky little communication issues - something we the adults do need professional help with as it really doesn't come naturally, and I freely admit we have issues - we'd have the perfect child. She is otherwise quite well behaved.
The assessment process is slow, isn't it? We've gone from GP to a general counsellor (who was useless) to one paed to the second paed with some very cathartic venting to the child and youth mental health mob (who basically said 'you need to see someone and get her assessed properly'), and that process alone took well over a year. We sent back a bunch of forms and whatnot some time ago, both self-filled and from her teacher, and I have no idea what happens now. I assume they are going to get back to us next, this has all fallen by the wayside a little with the new baby arriving.
I used to be on another forum where I (mistakenly) vented before I really knew about aspergers and wanted ideas (some help, sympathy and support would have been nice too), I got seriously howled down and told how much I must hate her and to 'just go get her assessed' as if it would be an overnight thing where you just pop out to see a paediatrician like you'd see a hairdresser and get your kid pigeonholed and rubber stamped in a happy little hour long appointment. No, its a really slow process, and thanks for nothing ladies. It seems much more supportive here.
ETA: I think I need to hire Lulu as a translator. She seems to actually know where DD#1 is coming from. I've never really hit that in an adult before.
Lulu is the guru Rumpled elf.
I am so frustrated at the moment at the education system, I have been trying to get extra help for the ASD boy in my class and have recently found out the missing link between me and the funding support occurred within my own school FFS! The woman from district office is great but because I have to follow a "chain of command" so to speak I get stuffed around.
Then I wanted to go to an all day inservice on ASD and the (insert swearword) boss said it was too much to replace me for the day and pay for the course. HOW THE F am I supposed to give this boy the best I can give if no-one will help me???????
Sorry for the vent but I think what happens next year when he has a teacher who has no idea about any of this. I am "lucky" in that heaps of the OT Riley does is relevant to school.
My book arrived from Borders today - Fun with the out of sync child, I am looking forward to starting it later when I get some peace!
Nah, Christy is the guru......but I am a good interpreter :lol:
RE - you can cut out about a year of head/wall/desk banging if you go straight to a Paed that specialises in Spectrum disorders. I't's been my experience (and well as a few others I've met) that anyone 'general' really doesn't have a clue. Tothe point we have been told our children are NOT on the spectrum when later (and proper) tests showed they bloody well ARE. Just like we thought.
Mrsmac - has Riley been fully assessed? I don't think you can write it off as just sensory until full testing has been done babe. I was nearly completely convinced Mitch was only sensory....until school started and then I KNEW those dorks were wrong.
Aspergers itself was only really recognised around 1994. It's not really a long time at all
Christy is awesome also!!
Riley has only been assessed by 2 OTs who specialise in spectrum kids (and informally by Christy LOL) I sometimes think he definitely is then other days not. There is a great paediatric psychologist near here who has been recommended to me so I may take R to see him.
He starts speech next week, our early intervention teacher who has observed him thinks he might have verbal dyspraxia so I am interested in what the speechie says.
I know its awful to whinge but it all costs so much, we had to stop the 1st Ot cause she only did 1 hour sessions and they were $122, we got $55 back even with a healthcare plan, thank goodness the new OT works in 1/2 hours and is cheaper (and closer) She is lovely, I have known her through school and another mutual friend for a few years- she was actually on Come Dine with me Australia!! (she hated it, they portrayed her sooo badly she got hate mail LOL)
The first paed we saw was useless - and it was a very short appt - but he referred us to the other guy, who seems good, but I haven't heard back from him yet. Probably a busy man. He thought she had elements of aspergers and oppositional defiance whatsit but wanted us to do an educational assessment as he thought some of her 'problems' were to do with being gifted and wanted an IQ test etc. The midwife I have visiting said the second fellow is really good. She had a look in DD#1's room while she was there and boggled at her castle - it is this massive lego thing, and all the pieces have been meticulously sorted by shape and colour lol
Must be a bit better having one parent who is on the spectrum, even slightly, because you'd have more of a chance of seeing things their way. Self and partner are definitely not on the spectrum, but in hindsight my ex is seriously on the spectrum but has never been assessed. He's beyond weird. What little contact I have with him (and it is *very* little contact) is irritatingly frustrating, repetitive, nitpicky, verbose and generally is *exactly* like trying to talk to her, except she's a child and he's supposed to be an adult. I broke up with him in 2000 (yes, I realise she was born in 2001) and he only started getting access when she was about 3 so its nature, not nurture that gives them both the same quirks.
There is an interesting article in the Readers digest written from the POV of 3 adults with ASD.
So Christy would have told you about all the cashola available if he did go through a formal process and was diagnosed?
Even if she has I will repeat it for the benefit of everyone because it's really important for people to know about it.
If you end up with an aspy dx, you get (for the under 6's) $12,000 to spend over the period of 2 years on ALL the therapists you will need.
I wish wish wish I had done it earlier (and $$$ was a huge problem for me), because now I can see all the things available to him, I can see what a HUGE difference it would have made. One year of the things I have only just started with him, could literally have been the difference between a slightly bumpy transition to school and where we are now. With me having to homeschool DS until we can 'catch him up' on the emotional side.
I'm pretty sure there is also a 'helping to get diagnosis' type medicare rebate available if you suspect Autism/Aspergers.
Sorry guys... sick and exhausted.... will come back tomorrow and answer questions... and thanks Lu!
Yeah I know all about the cash, T in my classes mum told me about it. Its also annoying that ASD children get teachers aide time at school but heaps of other probs get none. (not that I begrudge them the time they need more its just that so do other needs)
Lu- did Cyclone go to preschool ? R has been going this year and at the start his teacher really suspected ASD but now she says she thinks its a language prob. What did his preschool teacher's say ?
I think I need to call and make an appt with the paed pscych just so I know for myself once and for all and also to get R all the help he needs. Thanks Lu for making me take my head out of the sand LOL
As I've said elsewhere, I'm a bit of a discipline nazi (for the important stuff anyway, I'm also a messy person so I don't give two hoots about mess as long as it doesn't smell, isn't sticky and you can still walk around the house without injury - and it does actually get cleaned up occasionally not be permanent) so DD#1 is quite well behaved, very good at school, etc etc. The little one has picked up what we try and impart better than the big one so she's politer and more helpful but she's two so it comes with tantrums :D It helps that DD#1 doesn't generally ask questions, so she doesn't ever nag for anything (she hints and complains instead), and this makes her look extremely well behaved. So none of her teachers have ever flagged an issue. They use words like 'intriguing' about her stories of people being murdered in horrible ways, with illustrations to match (her life-long favourite topic).
I have a feeling that if I just let DD#1 get away with everything she wants to get away with and not give her any boundaries, or make idle threats that aren't followed through (all of which happen sometimes when she is visiting other people), she'd be really horrible, as she often is when she comes back from holidays. But this applies to any child.
I'm reading all sorts of (awesome) books lately - but I still haven't worked out the death/kill thing! DS is currently reading a book on tanks in the military.
mrsmac, he did go to preschool and I worked pretty closely with the teacher (spoke to her nearly every session etc), she didn't give me any indication he wouldn't be ready for school.....but then again I missed the last parent/kinder interview. I since find via the psych who did his assesment that she felt he wasn't ready. We spoke often about my choice of school etc so I was a bit surprised to hear that. Tbh, I don't think it would have made a difference as to how things turned out.
What else would I have done with a 5.5 year old if he didn't go to school? I just never considered an alternative tbh. He seemed pretty good in so many other ways....
I just wondered if the pre school had picked anything up, not very good that she never informed you he wasn't ready for school! As you say what the hell else would you do with him, its not like you can just decide to skip it!
How is he going at the new school? Is he there yet ?
I am feeling very down about it all today, doesn't help that my class have been off their faces because of the wind and I had staff meeting and now I have to tutor.
Anyone want to run away with me for a while?
Not yet, hopefully next term. The principal is really dark on my homeschooling and really puts me off. I'm trying to keep up his letters and numbers but the neuro chick just laughed her ass off and said he'll pick that up in no time.
What I'm loving so much is now I have FINALLY managed to start off with specialists is the strength and reinforcement they give me. I don't write so much about his progress in here, cos no one else would get a word in edgewise so I started a blog (in my sig) just for DS and I. And so I can blat it all out and keep track. I'd better update tonight actually....
ETA - hell yeah, where are we going???
we have 2 set days for daycare now im so excited tuesday mornings 9am to 12.30 and thursdays 12.30 till 4.30
hes getting better with words no sentances
and the meltdowns well nothing i cant handle
hoping to get him ready for kindy next year but i dont want to send him if hes not ready its so hard to know when tho
its always good to hear from you MM. Is young Murray seeing any specialists yet??
Cheers for a bit of a break and well done for handling those meltdowns. I didn't think I'd ever be able to handle it somedays. I felt like a fricken champion for getting though the day...now sometimes I am meh about it.
when he gets too much i take him to my mums and she takes over i think ild go narnas without my mum
the daycare are wonderful as its a verry small daycare he dosent get overwellmed on his days there are onlly 7 kids
atm they are setting up his early intervention and he needs to see his pead again soon for a review i moved house in may so the whole changing over of services has been slow verry slow still no OT or Speachy yet
Oh that's great about daycare!
Bugger about the OT's and stuff. My dream off running away to the country have taken a back seat, I'd never be able to access any services for DS. I'm lucky to get into the ones we have. Everything gets full really quickly.
i was in esperance if u google it haha its a long 10 hr drive to perth for services or a 4 hr trip to kalgoolie
so i moved back to harvey where my mum is its rural but only a 2 hr drive to perth and i quallify for alott more then i did way out in woop woop
oh i love his daycare they meet all his needs perfectly and cause its a small town atleast most of the mums know me so i dont cope that oh that child gosh hes awful gospip
atm im trying to change his diet any pointers atm all he eats is cereal lamb chops apples and pasta dosent varry much wonder how i could introduce some new foods without wearing most of it
All great news!
Got nothing on the food though. Have you tried Pentavite? I hide vegies where I can. DS has gotten really really fussy again. Driving me nuts.
Riley just ate an apple/strawberry puree!! Not much in the scheme of things but huge for us!The OT has made him a star chart for trying new foods, its been an uphill battle but he's up to 4 new things in 3 weeks LOL
Murray's mum- I hear you with the not many foods, Riley likes white or beige food (or mcnuggets LOL and he can tell if they aren't from McDs)
oh i try to trick murray with chops and for some reason he knows if ive cheated and got them fromt eh supermarket and not the butcher its weird
muz likes his food to be cutt up small devided on the plate and served in small portions at a time really frustrating cause i have to feed him first then eat after hes gone to bed cause i have no time to eat myself unless i wanna eat it cold
i have to say he is really good with bubba he hasnt hurt her yet but keeps trying to feed her pick her up and everytime shes asleep he screams at her till she wakes up poor bubba
DD#1 is having the reverse at the moment. She's rather proudly listing all the things she likes now that she used to hate. Chips, jeans and tomato sauce top the list. And we had some really long discussion about something really weird and technical last night WITHOUT ARGUING and I can't remember what it was now ...:
Ah that's right. Interstellar travel, the effect of no gravity on the human body, the speed of light, the speed of sound, lightning and thunder, and of course it always comes back to her favourite topic - the way you are most likely to die if you are hit by lightning. But no arguments!
Pinch me!
DD was diagnosed with her PPD last year. Over that time we have incrementally tried new things/therapies. Osteopath was one, which made a big difference because he put her on a GABA supplement. It not only changed some of her behaviour, but it also stopped her from having fits whenever she went over 37 degrees. Before that, if I thought she was going to have a temp I'd have to stalk her. Since starting she's had temps up to 39 degrees without fitting and I've seen the difference in her eyes and the smell of her breath because they were normally the give away of an impending fit.
Then we started (about six months ago) doing Sensory Integration Therapy and Extra Lesson through our local psychologist Marriane Judd. The differences were obvious, but mainly only to us in an everyday context. After the initial period we are now doing the at home program as part of our homeschooling Integrated Listening Systems Australia. Sound Learning Systems. Auditory, Listening Program, Sound Therapy, Australia which has been super beneficial. I can really tell the days when we have done our music time and when we haven't. (We do ENKI for homeschooling btw, if anyone is interested. It's expensive for a homeschool curriculum - about $800 a year to ship from America - but it is awesome and well worth it.
But the biggest change was with the diet, which was the GAPS (Gut and Psychology Syndrome) diet created by Dr N. Cambell-McBride, who has an autistic son herself. Very interesting reading, and makes lots of sense. I since come to truly believe that yeast-overgrowth is evil, particularly for my child. Balancing her good gut flora and removing yeast and yeast feeding foods from her diet has made the world of difference. Everyone comments on it. Those who don't know her would never guess she has any issues anymore. In fact, her public psychologist and therapy team have warned me that when they do the review in 6 months time, they're most probably going to have to take her off the spectrum. And I agree. She doesn't really belong there anymore. She still has some issues (like chewing metal and licking strange things), but it's worlds apart from where we were.
I encourage you all to look into some of these resources because they've made such a big difference in our lives, and having tools always helps. :)
:hello: ya all
long time me no post. Hope everyone is well and dandy.
I have an appointment tomorrow :dance: its so I can get a scoail worker for me :) its only taken 3 years but Im finally going to get one. I had waited fo rhte lady from Hume services to get me one once Mario left their 'care' but was sick of never hearing from them so did it myself. Friday I have 2 social workers coming here to help from another organisation for if we need help, funding ect for Mario and Tank..HUGE step forward for us.
Mario had a speech therapist at school the other week...and instead of ringing me to chat she send home a picture chart for us to 'follow' and use...um if she would have taken the time to ask me she would have known we dont use them. So Ive left a message for her to contact me so we can discuss my son and 'our' teaching ways. Love how someone who doesnt know you try and change the way you do things that work in your house....grr one simple phone call and a min chat would sooo be better.
Hope everyone has checked out the other thread I popped up about getting a career's card and companion card. I received my application in the mail today so can take it tomorrow when we see our pead
Why don't you use the picture chart Mazzie?
Does anyone know how much Boardmaker is?
I saw quiet a few kids who were non verbal using the chart and refused to say a word after using them for years, even after showing signs of being verbal. I knew that Mario was verbal but was echolaliac so I worked on getting him to speak correctly rather then copy. It took me a long time but by the time he was at kinder he was able to comminicate verbally. I had ever dame specialist tell me what I had to do without either listening to me or brush off what I had to say as I was only a mum and hadn't studied the specturm...:o. I had an OT come here one day telling me I should do this and that (should is a pet hate word for me) and when I said brushing doesnt work for us she laughed at me and asked me what I would know....it took me alot not to punch her in the face. Her supervisor went very white (supervisor know's me personally) but I stood up...looked her in the eye and told her I llived it every ****ing day..is that not enough??!! Then I politely thanked her for coming but asked her to walk back out the front door she had walked in and forget were we lived.
I spoke to our pead about Mario and he said I know what works as the proof was infront of him. He has supported me so much with what Ive done and agree's the board is sueless for mario.
Lu- I am going to post you the cards Christy made! (just talked to her about it today in fact). The early intervention unit at my school has boardmaker but I don't know how much it costs- do you get Facsia or Dadec money?? I know my pupil's mum was looking at buying one with one of those allowances.
Maz- I am learning so much about the sensory stuff every day and I see how one thing work with one child and not another- YOU are your child's primary carer and know him and what works best.
Finally convinced school to pay for me to go to an inservice on ASD with Sue Larkey next week ! I am really excited to find out more info to help the boy in my class and any other spectrum kids I teach in the future. I think the dept ed is very lax in not providing these courses for all teachers. I will grab every handout I can and send them to anyone who wants them.
Aaah, I see. What a PITA that they wouldn't listen to you - and what good reason you had to object to it!! Glad you have a paed on your side, it would be AWFUL without that.
Oh tanks Mrsmac, I know how busy you are. I'm really crap at drawings and I've learnt how much he needs the visual to help him get him through changing activities.
Lu - could you cut pics from a magazine for your picture cues? He could help you make them at the same time???
I know a lady who did it as she didnt have the $$ for it..OR can you get some clip art pic's and make your own...picture and the word underneith?