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Thread: Aspergers/Autism/Sensory Integration Chatter

  1. #181

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    Quote Originally Posted by maz View Post
    Do you 'post' the pics after he has completed something?
    Not exactly sure what you mean by that Maz?
    When we are finished an activity he pulls it off the velcro (sequence) and puts it back with the others.
    I find it really helps instead of verbal instructions. I never realised how much verbal communication could increase their anxiety until the psych explained it to me the other week. Prior to this I'm sure I had been going about everything the wrong way... oops - but better late than never I guess...



    Christy - still havent gotten together those pics sorry, got home late from birthday party last night, I promise I will get onto it soon!

  2. #182

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    oh hun, I've been working on my pictures for weeks & then the basic ones got lost twice!!! *groan* Pete's picking me up a cheap laminater so I can do it at home as well. I was just going to use blue tack LOL!

  3. #183

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    Mason is excited too Maz

    Welcome Ambah I think what Maz means about posting the pictures is using a box that the pictures can be put into once the task is done. Shoebox with a slit in it works well.
    Glad to hear Aidyn is doing well too. The structure would have helped. I think the ages of 3 - 4 were the hardest I had with Mason.

    Mason has been a bit weird the last couple of days. I suppose as he knows school has finished for the year and next year he has a new teacher, aide and is a grade 1 kid it could be the reason. TBH I'd have thought that there wouldn't be an issue until he was living the changes IYKWIM.
    Yesterday we had a family do and he switched between clinging onto rellies he hadn't seen for ages and telling them all about his stuff (starwars, lego and Ben10) to making noises and silly laughs in the corner. I think it gets a bit much and he needs to defrag, poor fella.

  4. #184

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    ah Sam, thats what Matilda's been doing!!! The neighbours are on school holidays and yesterday stayed home all day & they played all day, but around 2pm Matilda just laid on the ground and screamed.... for 4 hours. She had to "come down" from the playing. So today we've discussed that the girls are home all day again, and Matilda has to come in when Jovie has a sleep and have a rest with me at that time. I hope it works.

    I woke up frustrated from yesterday (DH & I just were destroyed from it... from the lack of knowing what to do now). And Matilda went straight into her "I want Lemon Sorbet" which is what sparked the explosion and I said "Look ,if you have sorbet now, I will just sit down and start phoning places to take you too because I can't deal with the screaming from yesterday afternoon when you wanted it but couldn't because you already had some" and she put it back in the freezer and ran to me for a cuddle saying "I'm so sorry mummy, I couldn't stop screaming" I feel pretty guilty over feeling that way, but DH & I just don't know what to do anymore.

  5. #185

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    SOOOOOooooo how are you all coping with the Christmas let down? Matilda's so discombobulated its freaky... one minute she's bouncing off the walls and crazy with anxiety & the next she's curled in the corner on top of one bean bag and under another... we're calling it the Matilda sandwich.

    Matilda & Jovie got bean bags from MIL for Christmas. I love it! They are great!! Matilda loves to roll all over them. Its great for her. She's so sensory seeking atm, its quite scary. Her toe nails on her right foot are nearly all gone from dragging it around.

    Okay... I have a big question to ask re: flapping.

    Today when I told Matilda she couldn't do something, she started flapping her hands in frustration. Pete said she did it yesterday as well when he asked her to listen to him. I've not noticed it before, or not to this degree. Did anyone elses child start flapping later? Or maybe I'm making a mountain out of a frustrated 4yr old

  6. #186

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    *maz puts hand up* yes that would be us with late flapping...he was 4 when he did it.....I just held his arms when he did it and after about a year it stopped.

    Dont stress about it hon....spectrum kids tend to finish one repetative thing by swapping it with another. Wilhelm went from flapping to holding his ears and rocking. I just go and hold him when he does it and calm him by humming so he can feel the vibrations through my chest.

    As for Christmas pinging....maz ****ed to say the least. Have told Jed's family please give gifts on birthdyas for Christmas for Wilhelm because giving him gifts after the fact confusses the **** out of him. (sorry for swearing very very annoyed)...speak to eldest SIL...says she is going to bring them all up on Mateauz birthday next week and is that alright...WTF!!!! I say well actually no and she snaps at me and says WHY? i tell her the above and she snaps again and says its going to cost her to much in postage........**** the postage what about my kid being screwed up for a week cause christmas was back in december not on the 3rd of January!!!! Im so sorry for putting you our Miss L.....didnt mean to make you feel like ****! I am so over non listening and self aposed family members atm its not ****ing funny.

    so thats my grrr for the week....and jed wonders why im getting so much sewing done!!!!

  7. #187

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    Christy I missed your post the other day. I think a lot of Masons hiding under the chairs at kinder was his way of trying to excape when it got too rowdy for him. I knew when he was like that I was in for a trashed bedroom that afternoon too. It drove me nuts because I wanted him to burn it off at kinder and come home and rest but it was the opposite. He's be full of nervous energy and go ballistic. He didn't tantrum though just be destructive. 4 hours is a long time for Matilda to be out of sorts like that

    LMAO at Matilda sandwich

    We get a bit of flapping but it never really was a big issue for us. When he did it though it was when he was having a tantrum. He is more into eye rolling and doing things with his fingers like pretending they are aeroplanes. That doesn't sound too bad until you see it in action and he does it a LOT.

    Arrrgh Maz! Don't ya love it when family don't get it! Even when you've told them over again
    Which brings me to a little vent. Mum started going on about the autistic kids she has looked after with work (she works for the council doing homecare for oldies but sometimes does respite afternoons for special needs kids). She keeps comparing Mason to them and going on about how one is 12 and wears a nappy and another strips off all the time and masturbates and as Mason doesn't do that he's not all that bad. Of course I know he's not that bad! Mason seems normal to her. Why do I have to reel off a list of his problems and learning issues for her to justify his diagnosis. I've only told her a dozen times. I think she's got KRAFT albeit selective.

  8. #188

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    What's KRAFT Sam?? Sounds like my Mum... she likes comparing everyone to Matilda, how Matilda "is not that bad"... I didn't say she was bad, I just have issues to deal with ? ARGH... the lack of understanding.

    The flapping got heaps worse today...so much that it was unignorable. If thats a word Lol.

  9. #189

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    Sorry Christy probably a local jargon thing for down here!

    Kan't Remember A F-ing Thing

  10. #190

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    I'm sure I made a post but it must have disappeared :-( We like a few of you had an OK Christmas but we a building to a MAJOR meltdown at the moment. I wrongly assumed that becuase we had already had 5 Christmases that things would be OK well you know what assume did don't you. We had a few tears and not an overly joyful day but at least we didn't have to go anywhere!!!

    He has made a new hidey hole, where his desk slides into his bunk bed - don't ask me how he gets in there but he does and it seems to be keeping away the worst of the melt down moments, that along with his new DS.

    I don't know what to do with DS at the moment. I am tightening up on the diet as we have been a little lax and I am making up our calender/daily plan as i type :-) but he is not looking for any of the things that used to help - jumping, wall banging etc??? I'm clueless and OT is closed until mid Jan :-(

    Also ... haven't mentioned this to anyone else but DH has applied for a new job... which will mean a move of about 1000 km. In the opposite direction of family. I'm not even trying to think about the implications until we find out for sure.

    RE family members - OMG! Isn't it funny how when you mention the "a" word to family and friends immediately they start comparing to the "autistic person' down the street blah blah blah. I hate it! My newphew is ASD so you can imagine the comparisons we get from MIL. When we first looked at getting him diagnoised we got the same statement, "nothing wrong with DS, he's nothing like DN" grrr. The only person who was suportive was of course SIL. We have lovely long chats now about our gorgeous boys and relate on sooo many levels (including b*&%$ing about MIL :-)

    Arm flapping - didn't start really noticing it until about 4 1/2 and it comes and goes. He also does the finger twiddle where he looks like he is playing a piano in mid air or something.

    Love the Matilda sandwich!

    have any of you talked about autism/aspergers with your child? We told DS a few months ago and got the book "all cats have aspergers" he was so stoked the other day when I told him the inventer of pokemon is a person who has aspergers :-) He is dreaming big dreams for himself now :-)

  11. #191

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    You know what we say to Matilda is, "honey you have something in your brain, which makes it confusing when you are dealing with most people who think differently. That is why you get so frustrated with us. Neither of us are "right" or "wrong" just different from each other." So that when she goes towards a melt down I can sometimes help her through it saying "that will hurt your brain, that is why you have to back away...." etc etc...

    I hate it when you can see a melt down coming, and there isn't much you can do. Maybe a few stim free days in a row? We've found Matilda is calm after a trip to the beach, so we have been going there a few days a week.

  12. #192

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    We don't really talk about it to Mason but we're going to have to soon I think. He knows he is a bit different to other kids in the way he thinks and does his school work though.

    I've seen that book Sarah. I think it's gorgeous I think I should get it for MIL who is in total denial about him, and she's seen him in full melt down.

    Sarah how is he with the DS? Does he get fixated on it? (One of my biggest worries with stuff like that). Interesting that you have another ASD child in the family too. Same here but on my side, though I think my DH has some spectrum features and possibly his dad did too.

    We had a big day yesterday with a wedding (the 10 year anniversary of them meeting, very sweet) and he did so well. It helped that there was a lot of kids there and they hired a jumping castle. We hardly saw him but oh boy did we hear him lol. He has quite a shriek when he gets excited. Come home time he didn't want to leave so I left him there with DH and half an hour later he decided it was home time. Hopefully any issues today will just be because he is a bit tired seeing it was almost 11pm by the time he got to bed. I checked on him before I went to bed and he was doing the plane thing with a glo stick.

  13. #193

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    Sarah - we got A DS for WIlhelm for Christmas too...he's heart broken cause he's already lost a game and he keep's telling me that he needs to buy a new one. Ive made a rule that its an hours play adn then it gets put up in my room. Ive always made this rule since the boys were small and ive been consistant with it so I dont get any **** when the hour is up.

    We tell Wilhelm that he's a special boy with super powers that we dont have. I told him about 2 weeks ago that he has 'Autism' and that we dont care if his brain is different to ours. He took it alright but I think it's gonna take a bit more for us to get it through to him. I like the idea of the book about it...Might have to invest in it I think. I know NIkolaus get's frustrated with him at times...but ive heard him tell his friends (proudly) his brother has Autism and is really smart....the 'normal' child seems to always suffer more then the child that is affected but it Poor Nikolaus has been through so much and it hurts cause he can remember everything that happens.

    Wilhelm is heavily into movies....like who the actors are, the people who help make it and trialers. He'd rarther sit and watch the second disc about the movie making thent he actual movie. We always say he's gonna be the next Steven Speilberg lol.

    The last week we have been prepping him up for Mateauz birthday...which he told us was in October until about 3 weeks ago lol. We're having a party here on saturday so hopefully he'll be alright. there are going to be heaps of pools of water for the kids to play in go his water fixation will be in fine form.

    Sarah - I bought one of those egg chairs from Ikea for Wilhelms time out. Its great cause it has a pull down blind so when he's really bad he goes and sit's in it and chill's and can block the outside world. When we first got it he used it 2 -3 times a day and now he is lucky to use it once a week.

    A for other children in the family on the spectrum - my niece has 2 that are on it. Funyn thing is...When Wilhelm was diagnosed my sister and both nieces laughed and told me suck ****! yes i dont talk to the loser's at all but anyway...her 3 yo daughter was diagnosed (unformally) with aspergers and now her almost one year old son is showing exactly the same signs...Karma people is all im saying! although I would never wish it on anyone but still they now live my life

    Our problem with Wilhelm atm is that he plays with his penis all the time....drives me insane so I just tell him to leave his penis alone...I sound like such a broken record

  14. #194

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    Oh Maz, my heart goes out to you and Wilhelm about losing the game, Xander is completely paranoid about losing a game or the stylus! We got some free games with ours, which one did he lose I might have one here that is similar. Xanny is only playing pokemon at the momnet so he wouldn't notice if one of other ones vamooshed.

    I lent the book to another family whose daughter has autism and they loved it and went out and bought there own copy. They found it was excellent, not only for their daughter (6) but for their older kids to understand too! We got ours from sue larkey's website.

    Maz - OMG at your family! I wouldn't be talking to them either. I have been eying off those egg chairs! Just need to find somewhere local that has one/stocks it to see if he will sit in it.

    Sam - Yes he does get fixated on the DS and playstation but we set the oven timer and he knows what that means. we also use the DS to destress when we HAVE to go places like shopping etc. The other thing is he is already heavily into the pokemon world and plays "pretend mode" where he acts out pokemon - usually an episode he has seen on tv or somewhere else. We have found by directing him towards playstation/DS it helps with his communication with other kids as it gives him a topic they understand rather then his "pretend mode" which no-one but him truely understood all the 'rules' to.

    We spent 3/4 of the day in a cardboard box today. But Ari thought it was awesome and made a car out of hers. I also managed to get him on the trampoline for a little while today which has helped to settle him a little. Only 27 days till school goes back Xander is counting down!

  15. #195

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    Hi - did anyone watch a show called Magnificent 7 on the ABC last night ? It's based on a true story of a single mum of seven who has four sons who are 'on the spectrum'.

    I missed bits of it, but have found it is in 10 minute parcels on youtube.

  16. #196

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    I will have to watch those.

    I made a horrible mistake today... I thought that with 3 days of prepping that we could go to the shops. I chose shops that are outside, and we popped into the chemist for 2 minutes, into the bread shop for 2 minutes... etc etc. We went into 3 shops and then spent time outside, she had the DS with her and sat in the back of the pram. She was good the entire time.... then we got home. Matilda lost it, ran out onto the street, screamed for 2 hours. Bit, scratched, kicked and hit me repeatedly. I thought we could do it, and I prepped her using pictures etc, I showed her where and she was excited about going out. But obviously it was too much too soon....

    I have another month to wait for appointments.... *groan*

  17. #197

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    Oh Christy! What a good girl she was though to hold out till you got home! I have found the same we can usually only go to one or two shops before coming home. I don't know what it is that sets them off? Noise, smell, lights?

  18. #198

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    After having a few days to process the news, I'm finally ready to put it down in words.

    Isobel, who is 6 years old has language delay, but with speech therapy has really improved, and is starting grade 1 this year.

    William who is 4 1/2 was diagnosed with ASD a year and a half ago.

    Daria is 28 months old and has significant language delay - less than 20 words.

    Alexander, Darias' twin was diagnosed with ASD on Tuesday.

    We were expecting the news, so it wasn't that big of a shock, but it has absolutely gutted us at the same time. We were desperately hoping that he wasn't, but it wasn't to be.

    Because all of the kidlets have problems- the paed's words were "One child with ASD is unusual, two is almost unheard of, and the girls have problems as well. Your the unluckiest family I know". - we now have to go and have genetic testing done.

    There is only a 5 - 10 % that the testing will show up anthing, but if there is anything, then we want them to make an informed decision when they are older if they want to have kidlets of their own.

    We are still processing the news, and just taking it one day at a time, it's just really good to be able to put thoughts down, even if it is just rambling!

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