Aspergers/Autism/Sensory Integration Chatter #2

Hi all,

Mizzme, welcome!!! It is a daunting thing to confront at first but we have gotten a lot of comfort from our song diagnoises as it really gave us insight into what was going through his head IYKWIM. This is a great placce to vent and learn and get support!

Lestyrox - OMG - you sound just like me a few months ago! I love DS so much but watching Ari developed "normally" if I can use that word has blown my mind! All the toys that DS never touched have been USED! She plays, often by herself and is so independent.

Chirsty - sorry to hear abou the UTI and the surgery. Hope things are settling down for you.

Maz - HI! Hope you enjoyed our beautiful state :-)

Murraysmum - good luck with the move hun. We have moved a lot and their isn't really an easy way to do it, especially when they are so young. DH freaked out about the boxes too but he explained to us recently that it is because he didn't understand that they would all be coming with us. How you can explain that to them??? I don't know. We always tried to set up his room as close to the way it was - he was very particular about where things went. Good luck with the move.

us - hmmmm where to start... Xander has been quiet. In that some days it's taking an hour or more for him to respond to us. it is very unsettling, if you have ever met my DS you would understand he is a non-stop talker so the silence has got me worried. He is also very aware of being 'different' and left out at school which is breaking my heart and has started playing games with the other kids with him being the kid they beat up on just so he can participate. His answer when I asked if he enjoyed playing the game... "at least then I'm being included. Everyone wants to be included don't they" :crying:

We are haivng a lot of sensory issues head banging, smacking himslef and sister, punching and licking... we have cut his OT down to once a fortnight as we can't really afford to keep up once a week for... forever??? Thinking of getting a book I saw on the Sue Larkey website on sensory procesing routines at home. We got him a punching bag today which has been great he thumps is and tackes it rather then walls or me and we can use it to squash him and roll too so quite versatile!

Lulu - let me know if you want some books and stuff on sensory processing. Like Christy finding out about sensory processing was the biggest "ahhh" moment in our life! It has helped us deal and overcome a lot of his "autistic traits" like flapping, head banging beign disengaged etc.

On an up side - my gorgeous boy went to a shop himself the other day and bought us some donuts and a milkshake. I wa so proud of him!!! I was secretly hiding JIC but he was perfect and so proud of himself. He also read his first chapter book all by himself today 13chap in one day - whoa! We are on the hunt for some more books for him :-) Looking at a reading age of about 10 at the moment - I am stunned

Ok, so i don't want to open a can of worms by bringing this up, i know immunisation is a controversial topic especially for people whose kids are on the spectrum and i don't want to offend anyone or start a debate. I'm just after some advice and information really and i'm not sure where to get it.

Ok so DS2 is due for his 12month needles. I have been dreading them because i am really undecided about whether or not i want him to get them. I know it sounds stupid but with all the controvery around whether or not the MMRI shot triggers ASD, i am really nervous about DS2 getting it. TBH i am undecided on the topic BUT as i'm sure you would all understand, because DS1 is on the spectrum i am just super cautious IYKWIM.

I truly believe that DS1 was born with his traits and i don't think anything 'triggered' his ASD (well not outside the womb anyway) BUT i can't help wondering if the MMRI shot perhaps contributed to it? I don't know, like i said i'm really undecided. But it is interesting that after DS1 hit one (around the time he had the shot) something happened. He was always in a 'fog' but at one the tantrums started, and they weren't normal tanties..i mean full on crazy drop of a hat screaming fits. He wouldn't go a day without a meltdown. Like i said i don't know if the MMRI had anything to do with it, it could have just been that his little body was going through a huge developmental change and he couldn't cope with it. I do find even now that when he has a growth spurt he goes a bit nutty and we have a few bad weeks where he regresses.

Anyway so the reasonable part of me thinks that i should just give DS2 the shot, he's had the others and all was fine...but there is this horrible fear inside me and i can't bear the thought of something bad happening. I think a part of me would die inside if the shot triggered an underlying tendancy towards ASD. DS2 is developing normally and is very different to his brother at the same age. There is no 'fog' and its so beautiful to see him playing 'normally'. But i still can't help thinking 'what if'?.

Anyway so i'm wondering if there is a number i can call to get some info? I don't want info on whether or not the MMRI shot causes ASD, like i said thats a can of worms. But i would like some info on whether or not i can give him the other shots and leave out MMRI or if i can delay the shots until he's older and i've made up my mind... does anyone know where i can find this out?

Thank in advance ;)

Yep, I'm sure you can. You can delay as long as you like too. Have a look in the Vacc Research and Info for further bits and pieces about delayed schedules.
You can also conscientiously object (for now anyway) on the basis on medical issues.

Thanks LuLu. I had a look in the vaccination info forum...hmmmm very interesting. I'm still not sure what to do though.. i think i'll read up a bit more before a make a decision..his needles can wait for a bit right?

Lesty - I had the same conversation when DD was born and spoke to our dr about my concerns. i asked specifically if any studies had been done on families with a significant family history of autism/aspergers/autistic traits and the effect of vaccinations.

He said no there had not been conclusive evidence either way and he recommends most people to get the immunisation... HOWEVER he said with out family history (DS, SIL son and daughter and now other SIL son) that he would not get his child vaccinated if in that situation. That was enough for me. Having said that it concerns me not having DD vaccinatated but I feel more confident in my ability to treat any contagious disease rather than watch DD (who has no signs of autism) disappear into that world. IYKWIM. Good luck with your decision!

i asked my pead the same thing about this bub all he said was to see him when bub was due for them

DD2 is not vaccinated.

I have so much to share... and yet its very hard to type out what we are going through atm... but its not all bad, just hard and exhausting!!! I will get back to this soon I promise!

tell me about it!

Will try to get in 2morow xoxoxo

Thanks so much ladies :) I'd love to hear your experiences ;)
I am thinking that i might just give him the hep b and the meningicochal (sorry bad spelling) and leave the MMR out....is that possible? I had a look through the vaccination posts and from what i've read it looks like it can be done.
How bad would it be if DS did get measles, mumps or rebella? My DH has had measles and he's ok...
I am strongly thinking i'll skip the MMR... and i think i'll skip DS1's second dose at 4yrs as well. It would just break my heart if the MMR triggered something in DS2 or if the second dose for DS1 at 4yrs made him sink further into the fog IYKWIM.

I think mumps in an adult male can effect their fertility and I believe it is a lot more painful as it affects more areas.

I think Rubella has something to do with deafness and brain damage for women who are pregnant if they come in contact with someone with it.


Having said that, my Alex is due for his 4yo jabs as of today and I am a bit wary of them.

Hi gals, just had to share an interesting situation that I found the other day. We are quite lucky here in Townsville (for a regional area) to have both an active Umbrella network and some autism support groups and OT's that specialise in sensory processing. Anyway the council decided to build an "all abilities" playground and many of these groups had a hand in the design. We went along today and.... DS loved it! We could have stayed there all day I think, so much for him to do, different sensory stuff like pebbles in the concrete to walk on lots of drums/bells to ring, paths that wind around and a smelly garden -full of herbs/smelly flowers etc. Tere is very little actual playground equipment - there is a large sand pit with access to water on different levels and 2 swings and lots of balance beams and stepping stones and a large wooden fort with squishy places to hide. and of course it is all fenced!!!

Anyway the funny thing is a friend of mine went last week and was saying how disappointed she was in it, no equipment and what was there she had to teach her chhild how to use where as my little man just went to town! How interesting it is for parents of "normal" children to see our side of life in the all abilitiies playground - whereas I am normally the one having to teach DS how to use equipment and due to his low muscle tone and uncoordination he often can't use any of it now he has found "his place"

We also met a lot of other like minded families - lots of yelling screaming kids (in a good way- well in an autistic good way) I think I have found my favourite place to hang out on weekends :-)

Ooooh. I'm sooooo tired. And tired cos I can't see it ending soon :shakehead:.

So Mitch has been diagnosed with Sensory Integration Disorder. Going to an OT once a f/night which is good but sometimes confusing.
She says his grip on the pencil isn't right, picks up that he has problem cutting out shapes with scissors, and tracing out lines.
Kinder teacher thinks this is a pile of bollocks - she even took a photo of the way he holds his pencil, says his concentration is pretty good and he does things on his own - even practicing his writing for ages. His latest colour in was REALLY good. Didn't show any real signs fine motor probs etc.

Kinder teacher is amazing with ds. Does a LOT of work with him and his meltdowns, has all the patience in the world and sends me sensory info and gives DS books to read "when I'm feeling angry etc" and return.

So I'm neither here nor there about the OT.

Had a meltdown a few weeks ago about him going to school next year. Mainly after the kinder AGM where they had 2 teachers from the school come to talk. Yes, it's great that they have small classes etc, but it was beginning to grate on me hearing about how the preps are writing at Gr2 level etc. All well and good for the rest of the world but what about that ones that don't march to THAT beat?

Anyhoo, found an alternative school that won't bat an eyelid when he wants to go outside and run around in the middle of a lesson - they will understand why he does it. They will encourage him to go pat the horses or chase the chickens when he is building up to a spazzout. They will not only listen when he bangs on about Great Engineering Feats of the World - they will push him further to explore.

So there - up yours establishment.
I'm so tired. He is doing really well but the meltdowns are always around the corner. It's starting to kill me when he wakes up grumpy - that's a looong day. I'm sad for him because we are getting further with the emotional side of it...but now he cries and says he hates himself for losing control and lashing out.

My poor liddle fella...

How you guys going?

Lulu, DS1 is similar. We know his fine motor skills are behind (and in our case kindy agrees), it's probably due to his low muscle tone. So he is doing OT once a week at the moment to try and bring him up to scratch for school next year. Not just fine motor skills but social stuff too. But here's the thing - sometimes his drawing / colouring etc is really, really good and I find myself scratching my head about the fine motor skills. I'm wondering if it's to do with frame of mind etc. Also, we've found he's better when he's warmed up (eg done some warm up exercises first, especially for fingers), so maybe it's related to that too. Anyway, just wanted you to know that you're not alone!

I also think you've done exactly the right thing with finding the alternative school. You are going to be so happy with that decision.

lulu - the new school sounds fantastic!!!! Well done! Finding a good OT is tricky, some friends of mine have seen OT's that don't do a thing for their kids, does your OT specilaise in sensory processing? Have you checked out the sue larkey website? She has heaps of books to help you devise your own sensory integration programs. DS copes OK with fine motor when he is insync (doesn't happen all that often) There can also be an issue with sensory processing and actually getting the visual/writing connection happening - so yes pencil grip might be good but when he is asked to draw a specific shape, trace a line, copy an object the sensory issues can interfere with his ability to take in the visula info and then spit it out again - does that make sense?

Xander had an underdeveloped pencil grip but now does well. He used to refuse to colour or write but now he enjoys it (as long as his other sensory needs are met - basically a constant battle) Xander has so many sensory issues it's like trying to keep a container balanced on a balance scale with ahole in the bottom and a tap dripping into it - it's a constant battle to stimulate one area and decrease the other and I have to admit at the moment I am failing dismally so we are getting a lot of behaviours as he seeks out the stimulation he needs.

Ds really strives to do the right thing too - which is great - as hard as it is on them it means they are working on the same page as you - your DS sounds so much like my little guy - esp the bit about him waking up grumpy - hated those days - have you tried noticing if there is something that sets him off like things being moved or a different routine in the morning - DS used to have a meltdown if I was out of bed before him and there was no getting back on track after that - LOL got to the point where I would hear him get up and run back to bed.

Gotta go - battery is almost dead. Hope everything goes well with the new school - look forward to hearing all about it!!!

sorry i been missing action just been trying to cope and failing dp is away for work and im on my own been trying to keep comming in here and update by the time i get him to bed im mentaly exhusted

meltdowns and OT.

My Alex has SPD and seeks deep pressure so he likes to bump and bounce into things (including the floor), likes to be wrapped in a sheet, loves the trampoline and space hopper. He sometimes says that he 'can't feel himself'. Part of our morning routine now is deep pressure/muscle type exercises to help him regulate himself and for him to be able to feel himself before he goes to speech or early intervention. The change has been dramatic and ace. I don't dread going out anymore or have to hold my breath when we walk past a kmart and say that we're not going in to look at trains :D

The thing with the fingers - some schools call it funny fingers - putting pegs around the edge of a basket, popping bubble wrap with finger tips, ruling lines, ripping paper, those mini hammer and nail sets for kids.

If OTs are like speechies - they come in a variety of abilities and you don't really know a 'dud' one until you've experienced an exceptional one.

barbie-up thats fantastic!!! We STILL have meltdowns when we walk past something M wants to see, but I can't do at that moment.... and we've been doing regulation work with an amazing OT for almost 12 months going weekly & sometimes fortnightly when she's in a bad way.

We went back to our behavioural paed two weeks ago who reprimended me for not doing enough :rolleyes: he said she should be in speech and a behavioural thing like ABA or RDI etc etc... floortime.... ARGH. As if I don't have enough stuff with her kidney issues and OT.... *deep breath* So today we are going to a speechie for an assessment to decide if she needs some help. Next week we start RDI.... its a behavioural approach to help parents teach their ASD kidlets how to respond in social situations without losing who they are.... sounds interesting & I'll let you know how we go ;)

Hey

Well some of you know how my DD can be, and some don't. She has a few traits, we haven't got a formal dx and so far we're not persuing one.

However. I have a concern. She's not in nursery yet (she's 4 in April) mainly because we keep moving around and renting and i physically couldn't have gotten her to her nursery after our move and wasn't willing to move her place to place every 6 months.

We've now bought a house in our dream area, and we're moving in January. So obviously i can now enrol her for nursery. But she hs a MAJOR problem with certain sounds - main triggers are other people/kids crying/screaming and hand-dryers (or hair dryers - that sort of noise). So i'm not sure what to do. Will a nursery teacher take me seriously if i tell them how she reacts to these things without a formal dx? She has a MAJOR meltdown, crying and running for me (or hiding if i'm not there) and i fear just one or two badly-handled episodes will put her off nursery for good -there are several toddler groups where there have been incidents that we can't go to anymore because she starts crying before we even get through the door. I had SPD when i was little and i can actually SEE the moment when the noise hits and her brain goes offline, it's like watching a PC crash and then come back online with everything flashing and bleeping...

She's very sociable, which is great, but she does have social problems in some ways - her peers get on fine with her, but she's very precocious and blunt which adults really notice and i am anxious for her to avoid being labelled "too big for her boots" which DH, me, my dad, basically all the asd-types in my family went through, because not every teacher gets that sometimes knowing the answer and saying the answer are the same thing, and DD is unable to sugarcoat. She isn't overtly disrespectful, but she doesn't hesitate to tell someone they're wrong and i don't know how well a teacher will handle this.

Another complicating factor...the new baby... It will cry, which will worry/scare/upset her, but i actually think that being around a crying sibling will help her get to grips a bit with the SPD (i know that exposure is all that helped dad, DH and I, though none of us gt or were offered OT) better than nursery will and also that age and emotional maturity can only help. I guess i'm wondering if and when i should enrol her in nursery. I am not totally fixed on it being vital. I think it's nice to get a run in on some things, like being out at a place away from me for a few hours, but she isn't at all clingy and will play in the softplay for 2 hours and only checks-in because she can see when i'm buying a biccie and she wants some! But obviously i'm there, and she knows it.

This is long and confused...do i enrol her before the baby comes (i cannot start her before Feb and it will be unliklely we'd get a place that quickly anyway) or do i wait until the baby is here and she's made that mental leap to big sister (baby due June1st so probably November or so at earliest)? She will be going to primary school in August/September 2011. I myself was enrolled at playschool (nursery basically) but was pulled out after a few weeks because i hated it and hated that my mum (a CCP) was at home with other little girls but had sent me away. I went to school no problem when the time came.

*sigh* i hope you more experienced mums can help - i'm kind of at a loss here...

Bx