Aspergers/Autism/Sensory Integration Chatter #3

[suse]

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.

[tan32]

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..

[mrsmac]

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!

[lilima]

It sound like a few people are having a tough time. I hope things improve soon for everyone. ATM J is stressing that I will make him go on the Santa train at myer. He went on it about five times last year! He has been stressing
For days!

[suse]

Tania - we're not too good with identifying meltdowns yet - some we can see coming and can divert (usually if he's had a bad night's sleep we can expect lots of frayed nerves), but some things are so random. Obviously not to him LOL. This morning's toe smashing episode was because he was washing his hands after going to the toilet, got distracted from his routine and wanted to turn the light on and off. With wet hands. Then totally lost it when I tried to guide him back to washing his hands. Part of it was what I call routine divergence stress and part of it was because he was fixating on something which was then denied. In hindsight it's obvious, but who could have predicted that he'd a) divert from routine or b) find something new to fixate from at exactly that point in time, when he'd done exactly the same routine without incidence several times that morning. Other times it's just random frustration which is even harder to predict, he'll be playing happily with a toy or puzzle, it won't behave in the way he wants it to and bam, things are getting flung willy nilly. Usually too quickly to even attempt diversion. The only predictable factor in this is his general mood, often relating to sleep. If he's otherwise having a good day and has slept well, he can cope with more variance or frustration before he loses it, and is thus easier to distract and divert.

Thanks for the hugs guys - really needed it today. I know it will get better, and we've had some great improvement, but it's still really rough at the moment. Kinda feel like everything revolves around Euan and we're walking on eggshells waiting for the next bomb to drop. Mixing metaphors a bit there. Mrsmac - had to giggle at your dad's words of wisdom, it makes mum's comment much more understanding by comparison. What frustrates me is that she's so fantastic with Euan (they have an amazing bond), and would walk on hot coals for him, she's so supportive of how we raise him and what we do, and helps out so unconditionally, and is very keen to learn more about autism, but on the flip side, she'll say or do things that suggest that she really doesn't get it. At all. So I feel really churlish for getting occasionally frustrated, because she is so damn supportive, but... There's always a 'but'.

[christy]

Sorry I've missed out a few days here! I've been sick which doesn't help.

Remember T? The 12 year old who has SI only just recently diagnosed? Well.... she's staying here atm because her mum just can't continue. She needed a break, so I said T could stay with us.

Suse, its so hard, but as you go you will pick up those triggers and then you have to decide whether or not its worth it.

mrsmac.... M is just out of night nappies. Its been 4 weeks now and she's 6. WOO HOO!!!! So there is hope. JJ is in pull ups overnight .

Us... well we have to go to the USA in a few weeks, so we've been doing social stories about the plane, talking about seeing Grandma in hospital, talking about going to Disneyland. The last few days we've been looking at images and videos of Disneyland so the kids can grasp the magnitude of it before getting there. I just found out today that Disneyland has a special pass for kids on the spectrum or with sensory integration. It basically means they don't have to wait in lines. They may have to wait, but they can have their place marked and go away and come back when they are going to get on the ride. Its awesome.... I'm so relieved.

[lilima]

Christy - I have used those passes before at Disneyland. They are great. You just get them at the information centre. make sure that you bring some sort of proof of her disability, as she doesn't have a physical disability it is not so obvious.

we have been invited to the variety Club Christmas bash. Is anyone else in Melb going?

also has anyone else got a companion card? I have extra copies of the paperwork here if anyone needs it.

I should add - Not everyone here will qualify for one. J does not qualify, but I use them at work

[Freya]

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.

[Ambah]

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...

[mrsmac]

Its interesting about the modelling behaviours from siblings- I ahve a little boy in my class who has a severely autistic older brother (virtually non verbal- goes to a special school) and for the 1st few weeks of school (kindergarten) he modelled those behaviours eg, refusing to speak, hiding under a desk, wouldn't do any colouring/cutting etc. I left him alone a bit then gently starting helping him or doing things with him and he is fine now but it was very difficult at first.

DS is going really well at speech, he is starting to self correct and he can say "L" now!!! He has become obsessed with a PS3 game and we have to monitor how much he plays it or he loses the plot when we turn it off

[christy]

WOO HOO for Disneyland!!!!!! We've had an awesome trip. The park was extremely crowded, but when we arrived, I went in and asked fora special pass because M has autism. I didn't have to show the info from the GP etc, but we got a special pass into all the rides. The longest we waited was 10 minutes. M got overstimulated so we went back to our hotel for 3 hours for a break and rest, but we went back and got front row seats for a parade and got a few more rides & it was awesome. M had a fantastic time and was overstimulated but fell asleep an hour after we got back.

Its been full on, plane trip, customs, waiting around, disneyland.... but M has really been awesome. All that preparation has been great! JJ has been a regular 4 yea old but its all good. Now... onto visiting family & friends.... *bracing myself*

[Freya]

Well I just wasted 30min of my life with a pediatrician who wouldnt even take my concerns seriously because my usually anti-christ like child was ofcourse a bloody angel the whole appointment.

She basically blamed

1. Lack of sleep
2. Being a boy
3. Being a middle child
4. My shoddy parenting skills

She only laid hands on him to check his chest and asked him maybe 4 questions, random stuff like what do you like to do, whats your favourite colour. She noted he had a severe speech problem (well duh effing duh if you had of read the report his speechie faxed over at your demon receptionist's request you WOULD KNOW THE SPECIFIC DETAILS.)

The one upside to the appt is she pseudo diagnosed him with asthma which I have been trying to get them to do for yonks so he has to take a chewable tablet every night at bedtime and hopefully it will stop the never ending cough he has. Plus I have to pump him full of iron and fish oil tablets. Cause ooparently they are the magic cure-all!

She laughed when I mentioned the physical voilence, scoffed that it was MY voice that made him tune out and not listen to the world around him, ignored the fact that I was at my wits end with his non-potty training, told me it was slack sleep that made him hyper yet didnt actually tell me how to fix it. $290 + $66 at the chemist for me to be no closer to sanity and feeling like a complete sack of ****.

*%@$.

[Nelle]

Oh man! Can you get a second opinion? Are you going to get more speech therapy? I would have thought if she was going to list any reasons at all, it would be speech...that can cause all sorts of issues, like frustration, trouble dealing with emotions, social delays...