Christy - sometimes it takes a crisis to get where we need to be. I hope you get some answers hun and some help!
MBP_mum - good luck with the assessments - they are bloody expensive aren't they. Hope it all works out
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Christy - sometimes it takes a crisis to get where we need to be. I hope you get some answers hun and some help!
MBP_mum - good luck with the assessments - they are bloody expensive aren't they. Hope it all works out
Anyone got any tips for me - here Struggling to find ways of playing/entertaining Xander at the moment.
Today is our psychology assessment? I'm not sure because she said to come without Matilda.... Anyway... Pete & I are heading in soon to go for this. I'm scared... I'm relieved.... I'm everything!!!
BTW... strange things... Matilda's writing has changed in the past 2 months... she's regressed??
I will update more later. I'm still living in a world of mass implosion but I'm sure I'll start treading water soon.
Hey girls, I've been ghosting in and out of this thread for quite a long time. DS is a bit of a puzzle to us all, sometimes when I think he is showing Aspy traits, I get convinced and I come in here to find the 'real' side of it, rather than googling. I hope you don't mind. Mitch and Matilda were very, very alike as babies/toddlers but Mitch has evened out somewhat. We have a few obsessions and he still overloads very very easily. He had a very basic assessment awhile back which (for me) ruled out ASD but sometimes I'm just not sure. I find it hard to work out if it's his environment (im convinced his father has ADD or is on the spectrum - he STILL walks on his toes).
Anyhoo
I was speaking to an Aide at his Kinder who was assisting a little girl with Autism. This lady is utterly convinced there is usually a parent or family member with at least ASD - she said usually once the child is diagnosed the parental traits are recognized too.:
Last week I read the most fascinating book called 'Not Even Wrong'. I really recommend it. The author was a researching a young man known as The Wild Boy born in the 1700's - it looks like this Wild Boy may be the first recorded case of Autism.
During this research the authors own son was diagnosed as well. His research was fascinating, apparently half of the Microsoft workforce have ASD! Massive percentages of ASD kids have parents in the Science/Engineering fields, and the rest are artists.
It's a wonderful book and I think it gives great insight into the inner (and brilliant) workings of these wonderful little minds. Please see if you can get a copy, highly reccommended. xoxoxoxoxo
Lulu, I think you are totally right. I work in IT and I am sure that many people I work with are. And I think both DH and I have some traits.
We get J's final results on Tuesday week. It will interesting to see what they say. I'm pretty sure they aren't going to say ASD but he certianly has traits and in the last couple of weeks with school holidays and change of routine we have seen more of them than usual. This must be obvious to others also - his swimming teacher told DH on Saturday (when he mucked around through his whole lesson) that she knows what it's like as her two kids are borderline everything too (and this was without us telling her anything about J's assessments). And the kindy teacher has mentioned some of his ASD traits also. It's interesting now too that for the first time DH is starting to refer to him as borderline ASD, something which I didn't think I'd ever hear him say!
I am thinking of you Christy. I hope it all goes well.
Lulu I was wondering if you popped your head in here now and again.... seeing as our two are peas in a pod. DH thinks they should get married someday :rolleyes:
Well... it was nice today to have someone listen to us and not call us bad parents. She asked why it was taking us so long in getting a diagnosis *groan* but we went through the shorter version and she asked questions along the way. She wants to do the formal diagnosis in two weeks with Matilda. A formal test for us to submit and get government funding. She is worried that we only have a year left for early intervention stuff but is eager to put us onto the right stuff straight away. Here's the clincher... its gunna cost us. BIG time. AAAARRRRGGGGGHHHHHH just after a car crash, just after the hospital trips....
So we are writing off part of our trip later in the year. We will make it to Melbourne, but not Adelaide. THats okay... its just I wish I had enough $$ to do everything we want.... ah well.
It was nice to talk with someone who didn't say even once that we were bad parents...*whew*
Christy :grouphug: we have spent a small fortune on Xander in the past 2 years. Have you rung medicare to see what help is available? We got quite a lot of our paed and OT assessments paid for with the HCWA plan - but had to pay for it all first, get the diagnoisis and then take it all in - email if you want the details - ended up being about 80% of the assessment costs back.
Lulu - we went through a similar phase when DS was about 4 where he would have really good times, then really bad ones and during the good times it was so hard to comprehend that there was anything actually wrong. Our first paed told us DS had traits but did not have ASD - he was a normal quirky little boy - he did quite bluntly accuse Dh of being autistic due to his lack of eye contact. 6 mth later we went back with letters from his teacher, his OT and Xander on a bad day and we walked out with a diagnosis within 10min - Dr couldn't wait to get us out of his office - he said he was exhausted. I could of hit him after sending us home 6mths ago saying he was normal and we were paranoid.
As for family history - My SIL has some traits and 2 of her 3 kids have ASD, both Dh and I often joke that we both have plenty of ASD traits - I think we all do. And now on reflection SIL and I think their father probably had a few traits himself. There are now 3 children on our side of the family with diagnoised ASD and another one - same age as my daughter who has a few traits so I believe there is def a genetic component to some autism.
mantaray - good luck with the results. Isnt amazing who you met who has contact with Autism - I find I met so many mothers with children on the spectrum it's like we have a magnetic attraction - maybe our kids do?
About the kids with ASD and their attraction - about a year ago my daughters joey (young scouts) group went on a bushwalk and I took Alex and the stroller because I knew he would not walk the whole lot. I got talking with a mum whose son was diagnosed with ASD and we compared the sensory issues of our sons. Alex would have been 2.5 then and her son was about eight.
We got back to the start of the walk and her son was pushing Alex on the swing for ages and he came over to me and asked for my phone number because he wanted 'that boy' (alex) to come to his place.
It was like they connected somehow, even though there was more than five years between them. I did give his mum our number, but unfortunately never heard from her.
Barb, the children I've met with ASD have always connected in some way to M that I don't understand. There is a boy at her school with Asperger's and he is totally in love with M. Its amazing. When she was in hospital he sent her drawings every day. He would drop them off at our house and then call to make sure DH brought them into hospital for her. We went to a dress up birthday party and he ran up to M and said "Oh Matilda, you love BEAUTIFUL!" and it made her day. She doesn't "play" with him, but he adores her and she acknowledges that he is special too.
Ambah's son Aidyn and Matilda had a connection too early on. Before either of us knew the direction that we were headed in. I always wondered why it was easy for her to see him.... now I know!
Welll we saw the paediatrician today who said Matilda was on the Autistic Spectrum and asked for us to have an ADOS test done to diagnose. We have that test booked in for next Friday....
DH & I are.... well..... tired. Exhausted, but relieved because we haven't been told we are bad parents again.
Hi all, sorry once again for being MIA it's been a busy few weeks with appointments for K's diagnosis. But we finally have it, he is high on the ASD scale. So now we have answers we can move forward.
I have also had other twin J seen by pead, he has been diagnosed with SPD (sensory processing disorder) and also have lots of signs of autism, he has to attend and OT for four months and the pead will then reassess him. he told me to prepare myself for the diagnose of autism for J as well. :doh:
Hoping you are all well and i am thinking of all you. Stay strong & positive mummies.
Wow lots happening for you both Christy and MBPmum- hope you are processing it all OK. Thinking of you both
I haven't got Al's paperwork handy, but I think they did that ADOS on him ... it was over four appointments. Lots of little toys and props.
From your stories here, I thought you already had a diagnosis ? You've been through heaps.
Al's paed. report said to get a speech and child psych assessment to go with hers. I went to a speechie recommended by a school mum as I didn't know where else to start. We/he went for five weeks - no report from her ?? She's not registered to provide under the helping children with autism package so I told her I would come back when she was. (not, I wasn't completely sold on her) In the meantime, two of the speechies from the early intervention centre have left as their private practice has gotten busy and we have spot with one of them, both of whom I really like. Al's had two one hour sessions and we will get a report next week.
We'd be in a bit of poo without the HCWA funding - this place charges twice what the original speechie does :-/
Barb we have been in this process for years. Because Matilda has been borderline, its hard to diagnose. She definately has sensory processing disorder, and is a high level of that... but whether or not she is on the spectrum has been the ongoing question for around a year now.
sorry ive been AWOL..had alot of issues here lately...mainly me and feeling down about the lack of understanding from people all around atm :( and feeling like im a badparent..you know the drill
SO for a bit of therapy and to get it out and have osme people read and understand what ticks in MY head I started a journal about our life with autsim. Its up in this section and although I cry when I post, its good...its helping me inside...helping me to feel a sort of calm if you like.
Best achievement in th eloast month...Wilhelm came up to my, grabbed my face with both of his hands and said...Mum I really love you you know...... it was right after I had had a massive melt down over things and I jsut felt so selfish...
ok will be prompting myself not to be such a tight butt and make more of an effort in coming in here
Hi everyone, sorry i haven't popped my head in in a while, how is everyone? i'm having major tantrum issues with Ethan and its really getting me down and i'm feeling really depressed.
I'm getting so tired of being screamed at all day everyday :cry: How much screaming can one person take?
This whole autism thing has got me feeling really alone and isolated. I feel like there's no one to talk to. The only person that understands is my hubby and even then he's getting sick of hearing about it. He's a solutions kind of guy and keeps telling me to 'call someone' but who? Is there a super nanny for autistic kids? Because if so send her my way!
I'm finding it really hard to discipline Ethan, without exagerating he is throwing tantrumes everytime i say no which is pretty much every 10 minutes. Today he had a monumental tantrum in the backyard because he lost his 'plug'. (bloody plug obsession, i feel like rounding up every plug in the house and burning them) His plug happened to be a tiny peice of red plastic he dug out of the ground (he pretends everything is a plug)and when he couldn't find it he went crazy...throwing himself on the ground, screaming, hitting himslef. so i took him upstairs (by this time the screaming had woken his baby brother up :wall:) tried to put him in the shower because he was all muddy. Well i physically had to hold him under the water while he thrashed about. Then once he calmed down a little i tried to give him lunch and of course he went balistic again because his pancake was too big..he wanted two little pancakes, not one big one. And then he went crazy because he wanted cordial instead of water. Finally i got him into bed for his afternoon nap and then he started going nuts because he wanted a red ball to take to bed with him (which i couldn't find) and then he went crazy again because i tried to tuck him in and he wanted to be untucked.
Finally i just screamed at him to go to sleep and even then he only stopped screaming for a minute only to start back up again. I feel like i have no authority over him, i actually feel like i'm wrapped around his little finger. I physically cringe everytime i have to say no to something because i know a tantrum is on its way and what sux is that half the time i have to give in becasue if i don't he screeches so loudly it wakes his brother up no matter where he is in the house and its easier to just give in than deal with both kids screaming:doh:.
I'm really feeling lost and so frustrated. How do i discipline him? I try naughty corner/time out but he gets his head so stuck on whatever it is he wants that he will just keep repeating it over and over all the while getting more and more upset. And if i try and explain to him why he's in time out i can't get a word in, he just repeats and repeats and the tantrum starts again. My Dh has some luck with him, but he is a big guy and is quite intimidating when he's angry. He usually just throws him in his room and walks away. This works but the pay off is that Ethan hardly wants anything to do with Dh and he will scream at him if dh trys to show him any affection. I don't want that, i treasure Ethan's cuddles but what do i do?
I'm also feeling really dissappointed because i've had Ethan on the GFCF diet for a month now and i was really hoping to see an improvement in his temperament. I saw subtle improvements the first few days and was really hopeful but that all went out the window and to be honest i think his temper is worse. I don't know if its the diet or something else but his tantrums are off the chart.
I'm really hanging out for his appointment with the speech pathologist and peadiatrician next month. I'm praying someone can give me some answers and advice because i don't know how much more screaming i can deal with. I don't think we'll get a diagnosis then and there, from reading other posts it seems like its a loooong road of appointments and different specialists to get a formal diagnosis.
What do you guys do? How do you deal with the tantrums? what strategies have you found useful? I'm desperate and any help is muuuuuuch appreciated. I love Ethan soooooo much but right now i'm really not enjoying motherhood. Most days i just feel like running away but my heart wont let me and of course i never would. I feel like such a failure and bad mummy :cry:
Sorry for the vent. Just had to get it out.
oh lestyrox :hug:... have you read Maz's and my stories? We've been posting our journey in this area... its amazing when you read about how other mum's have to cope with the screaming and the physical attacks you sometimes have to endure.
The biggest thing that helps me is knowing there are others out there who endure it as well. You are in Taree?? Have you got connected with the Aspect group up there? There is a "building blocks" group up in that area I think?? Have a google at Aspect or Autism Australia and find out if there are parenting groups or something up there.
We are going to get slotted in a parenting group straight away, just to have others who are living this way and with the screaming and watching their children hurt themselves. Its a different type of... living... its not living really, its existing.
Somedays we sit in the corner and cry next to them... or we take turns going away overnight for a break.... we have to make having a break a priority and get her used to it so we don't have those terrible repurcussions afterwards.
Thanks Christy, you're right, i'm not alone. Thank you ;) its nice to know that i'm not the only one to feel this way or live with these stressed :hug: sometimes it all just gets so overwhelming, i'm sure you know how it feels.
I'm not in Taree anymore..i really should change that :redface: We moved to Grafton a few months ago. I've contacted Coffs Caost Autisms and have been chatting with a lovely lady there. They have some great get togethers which look like alot of fun. Its a bit hard to drive the hour over to coffs with the kids so young but its nice to know its there for the future. Do you think there would be an Aspect group here in Grafton? I'm not familiar with Aspect, is it a country wide group?
better go, Ethan is screaming about something *sigh*.