Aspergers/Autism/Sensory Integration Chatter #3

2nd printer in a year has crapped itself. I can get boardmaker with my funding, I'm not sure if it's worth it or how long I will need it for. It's mainly a time thing, it's bloody fiddly and I'm barely keeping up with LIFE as it is.

It's more the visual so I can put things up on a chart - make bed, schoolwork time, play time, appointments etc and a clock or something. He's bloody amazing when I go through the days events and he likes ticking things off.

Holy cow - I just remembered seeing something Raven did....did she take pics of M doing various stuff and put that up on the wall or am I tripping?

Nope your right Lu...thats exactly what she does :)

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OR can you get some clip art pic's and make your own...picture and the word underneith?

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I have 2000 photos on one of my sites you can use for this kind of thing, and about 400 cartoons of common kid-friendly stuff on my homepage, but I can't post the link to either here ... PM me for the URLs :)

One of the sites has an analogue clock on it you can put times in and grab the image to print it off if you want.

I've had people use them for flash cards and educational games before. The hazard of being a cartoonist with a bunch of websites ;)

I incorporated the boardmaker little cards with pictures of M doing things, so she would be in the bath or on swings etc... and I used that to get through. I didn't pay a cent for mine ;)

We made a photo story about our school for the ASD boy in my class (well the EI teacher did with her boardmaker)
Would Cyclone work better with pictures that are directly related to him or could they be generic IYKWIM?

a think a mix of both would be good. Will Pm you RE!

I will send Christy's ones and see if we can make you some at school too.

How much do you lot rock?

THIS MUCH!!!!!!!!!!!!!!!!!!!!!!!

sooooooo

looks like I now have to do the grieving thing again as tank has been unformally diagnosed with asperges....'

hello rollercoaster...its been along time between rides :rolleyes: were do I buy my ticket again???

did you see that coming Maz? How old is he now?

*punches Mazzies ticket

Yeah I sort of did Lu :( still.

I remember going to a scan for Mini me and finding out she was a girl and the u/s tech said how good it was cause having a boy after a spectrum child gives you a high % of having another....was so affraid of having another boy when pg with tank for that reason.

He has lots of 'traits' but completely different (and not as low functioning) but alike to mario..they blasted get on like a house on fire to.

Ive never asked it but im getting tempted...the why me question is very close atm...just want to hide

*sigh, yeah I've heard the % thing too :hug:

silver lining - half the stuff you do with Mario will benefit Tank (and probably already has) - YAY for having a brother that 'gets' you.

Why me? A fark it, I could probably give you a shedload of uplifting crap but I think you might need to go hide for awhile....while you can - the little buggers always end up finding you.

*passes a bottle of scotch.

No words Maz, just a hug and a large drink. xxxx

Been a while since I've been in this thread :D Someone called my name I hear?

Lulu the visual chart did work for a little while but in the end it caused problems because he'd want to make stuff with the blu-tac off the back :rolleyes: and then he'd start to look at the pictures and get in a trance. Kind of hard to explain but he'd stare at it and talk about how it was made (he did it in class with his aide) like he was remembering the days events in his head ("it was hot that day..."), using the laminator etc. Ended up making us later in the morning because me moving him on then upset the sequence in his head. He needs to finish his thought process otherwise he gets anxious. Give it a go though but keep that in mind ;)

Maz :hug: Just :hug:

Ah fark Maz :hug: I'm with Lu, I could give you uplifting words and all the stuff that you already know, but I'm gonna go for the scotch hand around as well.

thanks guys but I think a nice big doobie would make me comfortably numb right now

My biggest concern....telling Dudie that his other brother has it aswell :( cause all we wanted was a 'normal' brother to play with

Hi Maz, huge hugs to you babe.
I don't blame you for wanting to shout out Why Me?

As for telling him I have no idea, I haven't figured out how to tell my DS he has aspergers.
I too sit on edge watching my now 2 yr old play , hoping he doesn't show the traits.

Once again big hugs and i will pass on a big drink too xxxxx

Lu -Boardmaker is about $900 for basic version. If you PM me a list of the symbols you want I will print and laminate for you.

Hi guys. Just jumping in here. Is anyone from Brisbane? I just saw that UQ is offering Stepping Stones PPP classes (one on one with ) for parents in the Brisbane area with a child on the autism spectrum. It is part of a research program so it is free but places are limited. I can pm the link if anyone is interested.

Can I join in on the scotch too? :hug: Maz - really big hugs.

Just a quick hello in here - E is going through the diagnosis/funding roundabout (paed has diagnosed high functioning autism), he's got his child development unit assessment on monday and we're in the process of applying for govt funding. Fark, I can now understand why early intervention is seen as desirable, it takes so long to organise anything that I wonder whether he'll even be in a program by the time he's five (he'll be three in November). I've been meaning to pop in to the thread for a while now, but having just had Miss A haven't had much time. Sad to be joining you, but knowing that I couldn't wish for a more wonderful group of women to share this with. I was pretty apprehensive about A's birth seeing that we had our paed appointment/diagnosis only a couple of weeks before she was born, but he's actually responded much better than we expected. Any issue he's had with her arrival has manifested itself in his usual nemesis, sleep (hello matchsticks, he was up from midnight till four this morning and that was after going to bed at nearly ten - his six week old sister sleeps better than he does), as well as a little bit more lashing out (out of control kicking/hitting/flailing) when things don't go his way. But when he notices her, he's been incredibly gentle and patient with his new sister, he's never once taken out his frustrations on her (DP and I, that's a different matter). His speech seems to improved since her arrival, which is positive. Still way, way behind his peers, but getting there.

I'll be about more as we go through the process, off to a doctors appointment now.

:hug: Suse...I think we need a bloody crate of scotch now.

Yes it takes forever to get into the system :( the ' professionals' blame funding....I say try getting off your butt and helping instead of your dame meetings all the time might have more of a positive effect on those who need you...but allas fall's on deaf ears.

I found Mario calmed down when we had mini me....it was a blessing in disguise for us and helped him come out and be more 'normal'

And hon....its a big step to say yes i need help and need to talk to others :hug: well done

Suse I can understand your frustration
My DS has had his assessments done we have received reports and now what.........NOTHING
Autismsa are meant to do a follow up at school , they haven't . We haven't heard from anyone and have received no support apart from on here with these lovely ladies.

I have borrowed a few books on Aspergers and am trying to wadlle my way through them all. I just want my little man to get some support

I found I was a bit lost for about a month after dx THEN the Autism Advisor called me, sent me the list of providers and it all went nuts from there.
Tan - why don't you call Autism SA yourself?

Thing is - no one will tell you what to do. After you get your funding "the golden ticket" lol it's up to you to arrange services etc - but once you are in the swing (well for me anyway) things really fly along.

this is why I started this second bloody blog of mine. I want to get this sort of information out there for the newly dx, there isn't much out there about the first few months. If you don't mind chickens, in the near future I will pm you for info about your own path to dx. It really seems to vary from state to state and it's easier when you know what to expect.

xoxo

We had an adavisor or social worker for mario and as soon as he started school she dropped us like a hot coal. She was ment to get us a new social worker but nothing. I waited 3 years and went stuff it.....I rang around last week and now have a new case manager for ME the career who will support and help me with anything I need. I have bene set up with a playgroup for childs with special needs..offered respite left right and centre (not that we will take it) and just recieved a phone call to say they will fund me a year's memebership at my local gym for respite for ME!!!!! :dance:

I went to a carerrs day away that was organised by some volunteer group for careers. It was the best day because it opened my eyes to funding, help and shoulders when I needed them. Ive found in the last 8 years no one is willing to help you unless you go out and demand help. Yep...hard for us who dont like asking and it feels like Im begging sometimes but they are there for us to help us so I have decided if there is something they can help me with that I cant do myself then im going to ask from now on.

Sun is shining....birds are singing and we are all breathing :)

Happy thoughts and rainbows people :dance:

Great to hear Mazzie!

*slaps Maz on the wrist for waiting so long.

I hope you can change your mindset when it comes to asking for 'help' - most of the volunteer places have been set up by those with Spectrum Kids because they know and understand what a difference support can make to the entire family. I'm glad you are tapping into that network hun xoxoxo

I know 2 ladies who go to Lifestart with their kids and they have mum's weekends away etc. I have my one weekend a year in Melbourne with Holly to keep me sane LOL
Hugs Maz xx

Queens birthday weekends with the BB girls are my life savers. I let loose big time :D...I know not alot of people get it and probably think the worst ofit but honestly..its the only weekend I get to not worry about what Wilhelm is doing let alone one of the other kids and have some fun.

We're going to Griffith this weekend......for our special guy's Baptism...yep he's decided to be Baptised and is so excited. He picked out a suit, his tie..even the ribbon colour and font on his candle :ROFL: spectrum much. Im touched and blessed at the people who he has picked for godparents...especially one inparticular and honestly...he couldnt have picked a more understanding and wonderful woman :cry: she gets him totally...dont you Raven.

Have started out therapy (maz version) with Mateauz today. UP and down... he's not permitted to go down until he say's the word up with hands up in the air...and it worked after 3 hours :dance: he said up and then went down......and I asked him down and he said NO!!! PMSL cracker but hey progress.

Maybe us spectrum mum's should get together once a year to get toally ****faced :p

great idea Maz...but I fear if you get everyone together on the wrong day we may run away forever :rofl:

I was just thinking we need to organise an ASD mum's night out... I reckon we need to do it in March or something...

you can do it at mah place - I haz a poooool

do you has a pool cleaner :p called Sven???

A place like with a day spa would be better...we need to all be away from our homes so Lu your place and anyone else's is out

J had the first part of one of the assessments today. I was so nervous about it that his dad had to take him. I just can;t handle taking him. Anyway he lasted about 1.5 hours and then they had to stop....
We have been in EI for nearly a year and still they have not come out to see him at Kindy etc. It is just SO SLOW

oh DS didn't last the hour of the tests. We had to stretch it right out cos of his stress of 'getting it right' xoxoxo

Fark fark farkity fark.

Had an appt here today with our neurotherapy chick. She wants further investigation becuase she doesn't believe ds has Aspergers and is leaning towards ADHD and ODD.

Why? - Superior language skills. Massive engery levels and inability to concentrate for a decent periods, the huge anger/rage issues when he can't have his own way.

I'm not surprised really. I like and trust this girl and she says - he is very perceptive of the environment around him, he is aware of the effect of his behaviour on others (and in fact often threatens to "go off") and CAN behave perfectly when it suits him. In fact he is quite the little charmer.

Recently I have been noticing these things too. Foolishly I thought it was all the hometherapy I've been doing with him :rolleyes:. I'm sure it has helped.....but when xp called me a few weeks ago to tell me ds was the life of the party at his place I thought we were making leaps. He strides to the front door to greet his grandads work buddies, shakes their hands and asks how their day is. Sits on the wives knees and makes jokes and chats away.

He has started to deal with other kids better - he is able to walk away from problems, and seems to have a better understanding of friendships. He made friends with a few kids on bikes out the front last week. He has no problem approaching people anymore. In fact he walked straight up to a group of guys down the main street (one of them had a snake!), puts out his hand and said "Hi, I'm Mitch, and that's my dad over there, can I see?" Surely this isn't Aspergers/Autism?

But what about the silly rituals - The Simpsons, the trains, Star Wars.......

I'm so tired from thinking about it. Bourbon time.

to hard to say babe...shiata brick and al the compost with it!!!!

Know what I find so dame frustrating...the fact that our kids haveto have a 'label' to get any sort of help what so ever.

My pead discribed the difference of autism/aspy to me last week..autism is more non social were aspy is more in your face social...Mateauz is full on in your face/take me home I dont care sort of kid were Wilhelm is the dont touch me/get the fark out of my space kid KWIM?? so in a way yes...M man is showing true traits of aspys

I :pray: that something get's sorted quickly for you guy's...friggen rollercoaster crap!!!! :comfort:

*maz passes flaggon over to Lu*

Hugs Lu, the aspy boy in my class does heaps of those things too which confuses me, he doesn't even have any obsessions.
Riley has been throwing hysterical tanties where he punches DD2 if things don't go his way, he is fine with everyone else except her :(
The OT got him to eat 2 baked beans today but when we got home he siad he wasn't eating them again and ate mashed potato for dinner and refused even chicken.

Pass me the bourbon too- between dealing with my full on sensory seeking aspy at school then coming home to DS I am at the end of my rope.

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In fact he walked straight up to a group of guys down the main street (one of them had a snake!), puts out his hand and said "Hi, I'm Mitch, and that's my dad over there, can I see?" Surely this isn't Aspergers/Autism?

But what about the silly rituals - The Simpsons, the trains, Star Wars.......

I'm so tired from thinking about it. Bourbon time.

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Go with your gut. You know your child better then the "single serve" psychologists (a bit of a Fight Club reference there but you know what I mean). Being interested in people isn't an instant autism rule out. My daughter used to do a similar thing. Some kids on the spectrum learn everything there is about space, or dinosaurs etc. My DD's tick was collecting information about people - this is why she's a PPD-NOS rather than straight out aspergers. The thing is, she didn't actually CARE about the people themselves, she just wanted to know the details so she catalogue them. What's your name? What are you doing? - Basically, narrate your life... It used to drive me balmy! Her biggest problem ( and still is) is a lack of discrimination. She will go up to ANYONE. Engage with ANYONE. Wants to talk to ANYONE. Wants to show affection to ANYONE - including wanting to give the repair man she's only met five minutes ago a kiss and cuddle goodbye - scary. Understanding social boundaries is also about being discriminatory. The thing I've personally found through speaking with other parents and personal experience is that a lot of autistic kids need a lot of help understanding the idea of "degree". To them it's either all or nothing, black or white, full or empty. It's all about RULES. If this is wrong then the complete opposite must be right...

Is he discriminating between who he approaches and who he doesn't? Is the interest he shows in the people themselves or is he following a script? Does he actually want to get to know them, is he looking for a connection? Or is this a new tick where he's just collecting information? This is the fundamental question.

*Lulu grabs the flagon, sinks the lot and passes around the Bourbon.

Further points -

*we raced through the dx to beat the clock for funding. Dx psych wasn't entirely happy with concrete aspy dx and did mention PDD-NOS and shades of other bits but god love her pushed it through for the $$$ and therefore extra help with intervention.

*ODD was something I did research, in fact before Aspergers. ADHD didn't even want to consider because of the constant mentions of medication. He really does ping off the walls though.

*He has not rated very high on the sensory tests either. After all that crap with the other stupid OT, a proper Autism-y OT has come to this conclusion. It's still there though.

I don't think he is ticking things off (totally get what you mean RE), he seems to really be looking for connections lately. There is to AND fro. When on form he is charming. He engages people right back - when he approched the snake people, apparently he did it with such a smile they all grabbed him and gave him head noogies and he laughed his butt off.

Jury isn't out either way but the ODD has always been at the back of my mind.

Had another minor argument today ... this is about a thermometer that remembers minimum and maximum temperatures. To clear the memory, you press reset. Pressing min (or max) twice returns you to the ordinary temperature.

"Can I press the min button?"
"Er, yes ..."
"It says zero!"
"That was last night's minimum. Press the reset button so we can find out tonight's"
"I pressed min again! See, it says six again!"
"That's just the current temperature, press reset"
"I already pressed min!"
"Can you press the reset button then?"
"But I already pressed min!!!!"

Ugh. I just took it off her and did it for her and showed her that now the min, max and normal temperatures were all 'six'.

good o - then next time she wants to press stuff, ask her which button does what...

Maz, I don't mind the labels as long as we have access to help and early intervention.

The best thing about it all is the fact I have got this funding. Without it I would not have been able to access the people that are helping me. Oh yes, I know my son better than anyone and we share a certain brainspace - but these people know about brain function and neuroplasticity in ways that I don't. These are the people that have a passion for the inner workings of the mind and have studied it for years, done stats, research and observations on many more children than just mine.