thread: Aspergers/Autism/Sensory Integration Chatter #3

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  1. #1
    Registered User

    Oct 2006
    Sydney NSW
    4,837

    Time timers are awesome, Sue Larkey recommends them for school kids with ASD too.
    Is anyone else tired of the constant whirl of OT and speech ? I feel like I am on a roller coaster some days, I need a couple of days off a week just to do all Riley's speech etc- sadly that is not possible .

    Christy hope your cheesy break is helping!!

  2. #2
    Registered User

    May 2007
    3,220

    I hear you. It seems to be appointment after appointment. Then there is the practising what they are learning in Sp and OT, plus all the other appts...

    We also have a time timer clock here that they have now purchased one at childcare that they are using very successfully with J there. $50 though so not cheap

  3. #3
    Lucy in the sky with diamonds.

    Jan 2005
    Funky Town, Vic
    7,070

    Oooh yeah, I hear ya. I did over 250ks one week. We had 3-4 appointments a week for a long time, basically a full time job with the homeschooling and home therapy.

    The social skills group has just finished and now I have an OT that comes to our place and that has eased things a bit........but now I'm running DS to school and back in hour blocks. I'm constantly moving, constantly!

    However all this stuff has been working because he is going BRILLIANTLY at school! We started with 30 mins per day, then an hour and as of next week he will go for an entire morning. He is happy to read with the aide and has started doing a little work in the classroom! I'm spinning with happiness. He tears around playing football at recess with all the boys, has made friends and the teacher was telling me all the kids ask where he is and fight to play with him!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    He is so proud of himself. We know there will be a reversal at some stage, but progress is progress.

    It's very tiring and it IS a rollercoaster. xoxoxo

  4. #4
    Registered User

    May 2007
    3,220

    Yay Lu

  5. #5
    Registered User

    Feb 2009
    2,031

    Been a bit absent but there is a whole heap going on at the moment and I am just keeping my head above water really.

    Chilly has been suspended again. He goes back today but its not a great start. Last week he was in a fight nearly every day and then on monday he refused to follow a teachers directions and swore at him so they suspended him..... *headdesk* Poor DH is dealing with this drama.

    We had an appt at the school for Princess on tuesday. They have moved her into a support unit class, which is great and I know its good for her, and I know its his job to explain it all to us, but I could have done without being told my DD was being put in a class for children with mild intellectual disabilities. I know one day soon we are going to have to face the facts on *something*.. just not sure what it is. And not really all that sure that either of us are ready to hear it.

    Been trying to work out where it all went wrong. Where I stuffed up so many times. How I kept getting it wrong and then so very right for bunny. I realised today that Bunny was the only pregnancy where the HG was diagnosed and managed. Could this be because of the HG? I had it in the most extreme way when pg with princess. Lost a good 30-40 kgs. Is that possible? I can't seem to find ANY information on the outcomes for children when the mum had HG. Can find plenty of all the crap that can go wrong for me... figures.

    If anyone knows, please let me know. =(

  6. #6
    Registered User

    Sep 2007
    Cairns
    1,787

    BR. You didn't stuff anything up. These things are sometimes out of our control.

    And boy don't I know that one today. Freakin over it. DP's on late shifts all week, and won't get home until 9:30 each night. Neither kid slept all weekend, and this morning's meltdown (one of many) resulted in Euan throwing his wooden chair which landed on my big toe - if it's not broken it bloody well feels like it. I'm just getting really over it. He's been doing really really well (he's been doing wees on the toilet for the first time ever, he's been singing songs the whole way through - big, big stuff for him), but one little thing goes out of alignment for him and the switch is sudden. We try to deal with it calmly and consistently, but it's bloody hard when DP and I are actually physically getting hurt. Kinda embarrassing really, getting beaten up by a three year old. And he doesn't realise, or have the capacity to realise that's what's happening. Sure, when he hurt my foot today he realised something was wrong, but he can't make the connection, and to be honest, when he's in meltdown mode it's so internal, you could drop a bomb next to him and he wouldn't notice. I got a comment that 'he's got to learn that he can't throw' - well duh! Really? No, we just pat him on the head and tell him he's a good boy and give him a freaking ice-cream whenever he starts flinging objects around the room. But there's a big, big world of difference between teaching him (or trying to teach him) that something isn't appropriate, we can model the right behaviour and do all of the right things, but short of cutting his bloody arms off so that he can't throw things, we can't actually make him understand this, let alone give him the ability to control his emotions and his response to them. That's going to take time - a lot of time. He's not even three for crying out loud.

    Anyway, thanks for letting me vent this - sure doesn't change anything, doesn't make my toe hurt any less, won't make this week any less suck-full, but it makes me feel a little bit better. Sort of.

  7. #7
    Registered User

    Dec 2007
    Adelaide, SA
    896

    Hugs Suse xx

    Just curious if any of you can pick up when a meltdown is coming. It's strange since Sat I have had a feeling something was brewing .Yesterday morning I said to DH i can sense a meltdown coming..yep sure enough we had a beauty n the middle of the swimming pool of all places. He has overcome his fear of water , he still doesn't like showers and baths but will manage to do it without to much complaints and kicking and screaming. However last night he had his first lesson in his new group. It was at a different time slot and with a new teacher and in the deep end of the pool.
    As I was walking him down he started with the 'Im going to die" talk and I spoke to him about it , he happily went into the pool and well that was that. I turned around not even 5 minutes later and he was screaming, refusing to do anything and just having a major meltdown.. I felt like jumping in with him.
    Luckily enough I am a swim teacher there so the staff know me and Hamish and were great with him. He was brought to me arms and legs flying everywhere. We managed to calm him down enough for him to catch his breath and he started up again. Dh came and picked him up and took him home as we had DD in the pool still.
    He fell asleep in the car.

    This morning he was set off again by Lachie making noises and just basically being a noisy toddler.
    Amazingly though this afternoon he is calm and the my feeling of something not quite right has gone..

  8. #8
    Registered User

    Oct 2006
    Sydney NSW
    4,837

    Hugs Suse. My dad used to helpfully tell me that if I hit Riley more he'd be better behaved! Luckily he is now more educated about sensory issues and much more understanding.
    Tania- I can tell when a meltdown is brewing usually and the OT has been great in helping us with strategies to try and divert them, they sometimes work! Sometimes I just leave places crying LOL.

    Has anyone had problems with their child wetting their pants ? Riley is TT but if he is busy or doing something he likes he just wets himself and doesn't seem to care until i mention it and then he says "Don't scream". He is still in night nappies and I worry he will be until he's 17!

  9. #9
    Registered User

    Dec 2005
    4,840

    Hi guys!

    I dont usually post in here anymore because we're still up in the air with Ripley and his issues so I feel like a bit of a fraud but I do read to keep track of how everyone is doing and I saw you in here Lilima and just wanted to give you big .

    Im sorry we didnt make it to the meet at your place Christy, ugh the last few weeks have been complete and utter misery so yeah, we would love to try again though some other time when we are all free

    As for us well, yeah. He's been doing pretty well at his speech sessions, he really likes his SP and usually gets very upset when he has to leave and tells me he misses 'Alan'. His behaviour is still so-so; some days we have a good run and others not so much. He is listening to instructions a bit more now so that helped a bit (his SP gave us a magnetized star chart which started off the revolution but sadly didnt make it long term, he just gets bored with rewards and goes back to being horrible). Technically his behaviour should be improving heaps now his speech is (we have 3 word sentences sometimes YAY!) but it really isnt, infact in some area's its much much worse. We applied for a carers allowance because the private speech costs are killing us and his SP had to grade him (Im sure some of you have seen the paperwork), well that was an eye opener. The SP doesnt think its autism even though he does have minor traits. He seems to think he might lean more toward the ADHD path. Paed appt is on Dec 2nd so I guess we'll find out what they think of him then.

    Ive decided to refuse his place at preschool for next year for a few reasons. One is that I think he would be too disruptive and he definately doesnt have the capacity to cope with the structure. That and his speech is still not up to par with a 3yo's so it would probably further complicate things. Oh and the whole refusing to potty train thing (apparently deliberately crapping on the floor or weeing on your bed is much 'funner' ) So he'll stay with his LDC centre except move up to the preschool room (ugh Im already stressing about that) and hopefully the year after he'll be where he needs to be to go to preschool.

    Im kind of drifting at the moment, no one thinks there is any label for him so they dont really want to know about him (and Im betting the paed will be no different) so I get to just keep trying to not kill him and hope to god he outgrows it all eventually. Its taking a toll on my marriage, my parenting of the other kids; Jett is now spiralling out of control with his behaviour I think in reaction to Rip so now I have to deal with his issues as well. My sleep is worse because now he's doing a song and a dance at naptime and bedtime, wakes up a few times a night and is difficult to get settled again, up at the crack of dawn. He doesnt eat well anymore, cracks it when I tell him cookies are not an appropriate food for meals. Not to mention his bad behaviour; hitting and kicking the other boys, locking Stellan in rooms and not telling me til I suddenly cant find him, destroying things, the crapping and peeing everywhere.............he even pretends to knife people if they annoy him (thankyou Dh and your stupid comp games). The newest torture is locking us out of the house when we go into the garage. Luckily I never go anywhere without my keys on a lanyard around my neck but he usually locks the 'knob' on the door which cannot be unlocked with a key. Thaaaaaaannkfully they are the kind with the little hole in the doorknob so I can slip a bobby pin and and pop the lock. So our house is hidden bobbypin central. No matter how many times he is punished for these things he still.does.them; Ive tried time outs, confiscating toys, yelling, spanking (gave that one up ages ago because all it did was start a brawl), the reward charts.

    Now its gone on to imitation. We've had to get the pedestal fans out because we have zero cooling in our sweatbox of a house. In a split second one afternoon Stell stuck his finger in and nearly sliced it off. Blood everywhere, lots of panic, some first aid from me and a cool bandaid and cuddles. So the next day, Rip decides it would be fun to stick his finger in it. Why? Because he wanted a bandaid because Stellan got one, so yeah why not try and slice your finger off $^*@. When he came and showed me I nearly flipped out. He just about sliced half his finger open. His nail is lucky to be on his finger. Dh said oh its normal behaviour. Not to me it isnt. He knew he would get hurt, possibly badly. But he wanted a bandaid and that was that. Same as the road sense; I have to keep hold of him however possible at all times because he just walks out onto the road or carpark then laughs after I nearly have a heart attack and tells me he nearly got wasted by a car. WTF?

    I just want to wake up one day and voila suddenly everything gets through to him and he's a normal kid like all the others. No violence, no defecating everywhere, no defiance, no obsessions, no meltdowns.
    Last edited by Freya; November 12th, 2010 at 10:30 AM.

  10. #10
    BellyBelly Life Member

    Jul 2004
    House of the crazy cat ladies...
    3,793

    well we have only just started. I realise this is DS's one main trigger. DD is very full on too - she was a zen baby but I think having a role model like big bro meltdown king has contributed to a lot of that. I feel sad for her sometimes.
    I can really relate, my DD was also a zen baby (love that term!), but these days I am getting a lot of comments from family members (I live with 3 of my sisters) that she is replicating a lot of his behaviours/reactions... I always used to brush this off, but when I really look at it I know theres some truth to it.
    I hope the OT sessions continue to go really well for you guys.
    I'm really looking forward to mine and XP's first appt next week to start tackling this stuff, in the meantime we've actually had a pretty cruisy week compared to the past few, so I think I'll just enjoy it and try and take note of what is making it work...

    *hugs* Freya.. Its so hard living in limbo land isnt it... I hope the paed appt is really helpful to you... DS and I were bounced around a bit without any set diagnosis from various specialists, but the paed we went to was quite clear about giving the diagnosis and the reasons for it.
    and extra *hugs* because I can feel what you are going through at the moment is just so damn difficult and frustrating...