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
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? 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.
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 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.
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!!!!!
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
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 ...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 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 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 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
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
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 . 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.
Registered User
Maz - really big hugs.
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 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.
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
she gets him totally...dont you Raven.
. 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.
Bookmarks