I know Mel, knowing I have support is amazing. I know that I'm not judged here which is fantastic.
I came home from OT a mess, and I think the girls picked up on it because they were pretty crazy but funny at the same time. The minute Pete got home, Matilda exploded again though. The OT has said the main thing we do differently over the next 7 days is have a NO SUGAR policy. So no lollies, juice, etc etc etc.... Now I'm pretty strict about food, and I really have a whole foods policy, so we don't have heaps of lollies in the house or anywhere. Matilda's been cracking it over sugar so the OT has said that M is using it to keep her in the frenzied state and we need to take it out of the equation.
So far she found a hidden barley sugar when she got home but now there is no sugar in the house. So we will have the withdrawals to go through next.... joy.
Well, the first assessments are over. Christy, I thought of you when the paed called him "quirky" - I wonder if it was the same one! We won't get full results until the OT and physio assessments have been done, but she did say she's anti-label, and with J's imaginative play and lack of tanties she would be reluctant to use the "Aspergers" word. However she said that school will be a big issue for him and that they will try to push to have him labelled as Aspergers.
Her initial comments were that he had advanced cognitive skills and below average adaptive skills (not by a lot though) and his gross motor skills are at the lower end of normal. Apparently having such a big difference between the level of cognitive skills and the level of adaptive skills is pretty difficult, so there are many challenges in managing that. She thinks we will have trouble finding the right school for him, and maintaining his happiness and emotional wellbeing through the school years, but that he should come out the other side as a well-functioning adult.
She thinks the OT assessment will be really interesting and will tell us a lot more.
I am so glad that DH was there. He feels so much better about things having heard her vocalise many of the things we have noticed, and assure us that he's not as far behind in some areas as we thought (and have been led to believe by kindy). All in all it's been worth doing so far. Hopefully the rest of the assessments will go well.
I have all my appointments booked I have another appointment with the pead this Friday, Autism speech assessment in 2nd July and the pshyc appointments are also in the first 2 weeks of July. Things are finally coming along nicely.
Lets just hope we get some answers soon.
These appointments aren't coming cheap. But thank god for private health. I can't believe private health does not cover peadatricians thou.
Hi everyone, i hope you don't mind me dropping in. I've been keeping an eye on this thread for a while but have been umming and ahhing about whether to write anything or not.
I don't know whether to be worried about Ethan's behaviour or not. He's always been a bit 'different' and has heaps of little quirks and obsessions. A big part of me thinks he's fine and that his quirks are just part of his personality but since ds2 has come along i've noticed the differences between him and Ethan at the same age.
A bit of background.. Ethan was a smiley bub and babbled alot, he reached all his milestones up until he turned 1. Well at 1 its like something happened, all of a sudden he started having major tanties, he would scream and scream if he didn't get his own way or if i took something off him but sometimes i had absolutley no idea why he was upset. It was horrible. I pretty much couldn't leave the house for a whole year because he would end up in a tanty. I noticed he would get overwhelmed at playgroup and was more interested in playing by himself than with the other kids. He wouldn't really respond to strangers, or wave goodbye and he never really got into music, what i mean is he didn't 'find the beat' he would never bop along to music or anything like that. Around this time his "quirks or obsessions" started. He was obsessed with doors, anything with a door, especially sliding doors. Mum's group was a nightmare because we'd take turns having it at some of the mum's houses and they all had sliding glass doors. Ethan would sit and slide it open and closed for the whole time we were there and if anyone got in his way or tryed to stop him he would have a melt down. Next came lids and containers, and now its plugs and sinks, he has a collection of plugs that he loves and he will constantly ask me for 'more wawa (water)" He loves me filling the sink up with water so that he can take the plug out and watch the water go down the sink.
At age 2 he wasn't talking much, he could only say mumma, dadda and uuh (up). I raised my concerns with the MCHN at his 2year check and she referred him to a speech pathologist. It tooks 6months for him to be seen and in that time his vocabulary exploded to well over 80 words by 2 1/2 and now he is copying everything we say and puts 3-4 words sentences together. My concern is that he dosn't really have a conversation with us, its more like he will copy what we say and ask for things but most of the time he will be repeating things.. like he's obsessed with pointing out big and small things or the colour of things and he will say it over and over until i repeat it back to him.
To his credit he has come a loooong way since age 2 (he's 3 in August) his tanties aren't nearly as bad and a lot of the time i can tell him no without too much of a fuss. He is very offectionate and is always giving kisses to dh, myself, his brother and even his plugs! He's ok with change, wonderful at following direction, makes eye contact all the time. likes to play with other kids now but can be very cautious with trying new things. He can count to 5, knows his alphabet, can name 3 shapes, knows 5 colours etc. He waves goodbye now and dances, he has imaginary play but most of the time its about his plugs. For example he'll pretend the coushion is a plug and the lounge is a sink and he'll take the 'plug' out and make the noise of water going down the sink.. i've even heard him sleep talking about his plugs!
I'm soo proud of how far he's come but i still can't help worrying that all his quirks are something more.. It seems like he's not as aware as other kids his age if that makes sense. Sometimes dh and i will see another kid his age and we're just blown away by how advanced they are.
I was hoping some of you could share your childs "quirks" with me. Its so hard to know whether Ethan's quirks are age appropriate or something more. I've tried googling info on Austism but the stuff that comes up doesn't sound like Ethan at all. DH has always been adament that Ethan is 'normal' (sorry, don't mean to offend) but even he has noticed that Ethan is behind kids his age.
Can anyone share their expereince? Were there things about your child that seemed odd or quirky? Thanks so much.
I have to mention the lighter side to J's assessments today. The paed nearly laughed out loud when we told her about J's refusal to answer questions such as "what is your name" and his replies such as "hmm, I don't think I'm going to tell you that today. You can try and ask me again tomorrow or Wednesday".
And the audiologist got quite a shock when J was supposed to put a peg in the slot each time he heard the sound. A few goes in he said "just press the button already" to her - he wasn't supposed to realise that she was pressing a button to make the sound happen!
Yeah, there were but I'm feeling really drained this morning. I guess the thought of so many difficult years ahead on top of the day to day grind is a sobering thought. Plus I need sleep!
Reading your post brings back a lot of memories...my little brother, who is now 19 years old has Autism. His Autism was very profound as a child and there was a lot of rocking, self harm, screaming, hitting and obsessions. When little was known about Autism people used to look at my mum in disgust as M screamed his way through shopping centers and lay on the ground spitting, kicking and trying to make himself vomit. Poor baby.
And food! My god, he went off food and had to be hospitalised. That was one of the worst moments of my life...my siblings and I waving him goodbye as my mum and dad drove off to hospital.
M's early intervention at Irabina proved to be a successful one, and he really turned the corner. I remember clearly...he told a lie. Up until then he was quite robotic in his communication and expressed very random emotions (ie. when he had hurt himself really badly he would laugh and smile). And then one day he hid something, we found it and asked him about it.... to which he lied and said he knew nothing of it and smirked! Well, we just about cracked the champagne! LOL
He attended VCE at a public high school and now studies Psychology at Uni....he was even a spokesperson for Autism Victoria for a while. To this day he admits he almost feels like screaming when we sing Happy Birthday (lol) and everything in his room has it's place so don't even think about moving it! But through this experience we have met so many incredible families and kids...
M's Autism has been an amazing journey.
Have added a link to Jenny McCarthy's Autism Organisation if you are interested. While I don't necessarily agree about the vaccination thing when it comes to my brother, I love the tireless work she has been doing.
Well, I've tried to post over the past week but... its not gone through & I was borrowing someone's wireless internet stuff because our internet & Voip phone weren't connected for a full week!!!
Thankfully we got it back today.
So.... Matilda....
She's been frantic and on edge since we got out of hospital and the accident just destroyed her. She was a full on mess.... melt down mode all of the time. Even if she woke up in the middle of the night, she woke up in that high anxiety state.... you know what I mean.
I got her into the Ot for an extra session on Friday, and then today we had the OT martial arts class, and tonight she's much better. She has her next OT visit on Monday, and on Wednesday her OT is going to her school.... so hopefully we will get on top of it, because my mental state is deteriorating fast. Its just so hard, she's like a cyclone in our house and its hard to keep on top of everything. I can't sit down for more than 2 minutes without a melt down over something and I'm tired and exhausted as well.
Anyway... sorry to be soooo ummmmm selfish in here lately, I have had a lot on my mind. I've actually takens a small step back from the moderating/admining here on BB for a little while to just get on top of things.
Hey Christy - Hugs - this is your pplace to be selfish. We all understand and we all spend our days putting others over ourselves so indulge as much as you need to - we are here to listen :-)
Pleased you have got your internet back and that the OT is helping Matilda settle for you a little. Fingers crossed it continues.
Hope everyone doesn't mind me posting again. I'm just feeling sad today. I was just in the backyard with Ethan and i guess i had a moment of clarity while i was watching him play, i tried to switch off mummy mode and just observe him through the eyes of someone who doesn't know him and i realised with sadness that there is definitely something 'different' about him. What that is exactly i don't know but i think i'm ready to find out. He had the whole backyard to play in but was just fixated on the water in his little pool and playing with his white plug. He pretends EVERYTHING is a plug. The leaf was a plug, the nuts off the macadamia tree were plugs. Then the table was a sink, the chair was a sink. His repeating is driving me nuts as well. I tried ignoring his plug talk today to see if he would focus on something else but he kept repeating 'white pluggy, white pluggy' over and over until i finally repeated it back to him to which he smiled and then picked up a leaf and started again "pluggy pluggy pluggy'. He know's its not a plug but he pretends EVERYTHING is a plug. The last 2 days i haven't let him play in the sink or with plugs (he loves it when i fill the kitchen sink with water and he takes the plug out and watches the water go down the sink..he could do this all day if i let him) and he has been asking me for the plugs constantly. I'd say 80% of his talk is about plugs and sinks and water.
I think the last year and a half DH and i have been in denial and haven't wanted to admit that Ethan is quite possibly mildly Autistic or fits on the spectrum somewhere. DH and i both had horrible traumatic childhoods and we both so desperately want our boys to be 'normal' and have a normal childhood, i guess thats why we've been so scared to admit that Ethan is different.
So now i'm a bit lost as to what to do. I feel so scared to label him and i still so desperately hang on to the hope that he'll grow out of his 'quirks' but a part of me doubts he will and i know its important to get him into a program early if he is autistic or has aspergers.
So i guess i'm just after some advice, should i take him to his doctor and voice my concerns there? Should i talk to his day carers and see what they think of his behaviour? Or should i wait until his next speech pathology appointment which could be 4months away to see if there's improvement and see what they think?
My name is Samantha. I have 2 boys, and my eldest son was diagnosed with Autism a month ago. Its taken me about a month to process it I wasnt expecting "Autism" .. if anything i was expecting Global Devolpement Disorder.. obvioulsy i was way off track.
I guess im looking for a support group .. just some other mums to talk too.. i feel so alone.. .. i was looking to join like a playgroup or something around my area who has a 'special needs group' where i could talk to other mums, but there isnt anything around my area..
I look forward to chatting and getting to know you girls.
We've been a bit quiet here lately, things happening for everyone I suppose.
We've just gotten back from holidays!!!! It was good and hard at the same time. Matilda did really well the first few days, she knew what was happening and did well with the car. We drove to Melbourne from Sydney with a few stops on the way there & back. We got to visit with the gorgeous Maz and her super kids Matilda and Wilhelm are amazing to see together, they are similar beings... then we headed out to Melbourne and stayed with some friends there & got to see the loverly Lulu and ~Raven~ while there. Matilda coped for most of it really well, but there were times when we didn't have anything set planned or something went not according to her plan and she didn't react well... a few flappy episodes and a couple small meltdowns, but all in all that was amazing!!! Her food aversion was the worst obstacle, and we just gave up and decided to worry about what she's eating when she settles at home. So tonight, for the third time in a week will be bolognaise...
I've got a lot to do now with her EI package.... and we will get there..... just with the GA and scope a few weeks ago and then holidays, well I put that on hold. Now while on holidays she got another UTI which means that surgery will be brought forward, who knows when we'll get onto it!!!
Hi all, sorry i've been MIA lately, i've been flat out with my uni work..trying to get assignmnets finished with 2 screaming boys is not easy.
Hi Mizzme, nice to meet you i know how you feel. We're still in the process of getting DS1 disgnosed but i've known he's different for a while. Its hard to come to terms with isn't it? This whole autism thing can leave you feeling so isolated and alone. There are a great bunch of ladies on here to chat to
My youngest turns one this month....this year has gone so fast but to be honest i wouldn't want to go back to where i was 6 months ago. The first 6 months of DS2's life were hell. I definitely underestimated how stressful having another baby and a SN son is. BUT all is good now.....
Anyway i just wanted to share this with you, DS2 got out the walky thingy (you know the little cart things they push around to help them learn to walk) that i bought ds1 for his first birthday that has been gathering dust... and you know what...he used it! i mean he stood up and usued it properly, he didn't sit there and spin the wheels like his brother did when i gave it to him... it was just so...releiving to see him using properly and loving it. I just wanted to share that I love ds1 so much and i love the things that make him different but it is just so nice to see his younger brother developing 'normally'. He waved the other day, something ds1 didn't do until well over 2, and still doesn't really do now. It bought tears to my eyes.
I am sooooo proud of both my boys and i am so proud of how far Ethan has come, its just such a weight of my shoulders to see his little brother reach all the milestones that Ethan missed. There isn't the 'fog' there that Ethan had. Of course if it ever turned out that ds2 is on the spectrum as well nothing would change. I love them both so much.
But there is something so magical about watching ds2, bop to music, wave, climb etc all the things Ethan had trouble with.
Anyway sorry to glog the forum with my ramble. I just needed to share because i think its only something other mum's of kids on the spectrum could truly appreciate
Lovely ladies... one of our members has some questions about helping a little one who has aspergers enjoy little athletics... can you provide some advice? Thread is here.
I have another appointment with the pead this Friday, Autism speech assessment in 2nd July and the pshyc appointments are also in the first 2 weeks of July. Things are finally coming along nicely. 
Ethan's "quirks".
I wasnt expecting "Autism" .. if anything i was expecting Global Devolpement Disorder.. obvioulsy i was way off track.
Matilda and Wilhelm are amazing to see together, they are similar beings... then we headed out to Melbourne and stayed with some friends there & got to see the loverly Lulu and ~Raven~ while there. Matilda coped for most of it really well, but there were times when we didn't have anything set planned or something went not according to her plan and she didn't react well... a few flappy episodes and a couple small meltdowns, but all in all that was amazing!!! Her food aversion was the worst obstacle, and we just gave up and decided to worry about what she's eating when she settles at home. So tonight, for the third time in a week will be bolognaise...
i know how you feel. We're still in the process of getting DS1 disgnosed but i've known he's different for a while. Its hard to come to terms with isn't it? This whole autism thing can leave you feeling so isolated and alone. There are a great bunch of ladies on here to chat to 
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