Aspergers/Autism/Sensory Integration Chatter #2

[lestyrox]

Mrraysmum- YAY for blowing kisses Isn't it beautiful when something special like that happens ds tell me he loves me now but only if i pester him to say it lol...and usually its like...'love mummy?...come on, do you love mummy?... i know you do....love mummy? and then finally with a little smile he'll mumble 'wuv mummy'. hehehe some times he's really cheeky though and i'll say 'love mummy?' and he'll think about it for a minute and then pick up his rock and say, 'wuv rock'....he's going through a rock obsession at the moment

I'm sorry about the whole day care thing. You poor thing having to drive 26km in and then back and then to have to do that 4 times a day! Good luck hun, i really hope something works out so it isn't so hard for you.

Well hubby is at a job interview right now and i'm sooooooo nervous for him... its an 8-4 job, 5 days a week so it would be a God send if he got it. He works 8-7, 6 days a week atm so it would be sooo nice to have him home for a few extra hours a day to help out with the boys....fingers crossed!!!!

[murraysmum]

yeah i told a friend and i was soo excited and all she said was so kids start to do that from when they are little thats not so exciting i looked at her and went well its exciting to me

re daycare i told them i need to stay long day care untill we move into town as atm its tooo hard on us plus all the fuel its bad enough dp does 130kms a day plus daycare trips ect

speachpath ends this tuesday i hope i can get another block if not ill just have to find something

thats good about ur hubby working less mines been home more for 3 weeks its drivingme round the twist lol

[~Saram~]

The thing is the pead we saw didn't mention OT, speech Path, psychologists etc etc so i really don'y know where to turn.

On our first Paed (well actually second - but first with this one) appoint I asked about referrals and I was told speech - yep will help with his stutter, organisation and conversation, OT - if I wanted to waste my time and money he could give me a refferal but basically that muck around with coloured paper and headphones and make you fork out a lot of money for unnecessary gadgets - yup needless to say we didn't go and see the OT after that but we did go after an amazing turn of circumstances and my god it just adds to the many reasons I never want to go back to the paed ever again. Grrr just thinking about it makes me so angry - he has obviously never had to live with a child with sensory processing/autism

A question for those of you who have a diagnosis, do you think its better to get a formal diagnosis early or wait until school age? I am trying to work out whether i should push for a formal diagnosis now or wait until he starts school and go from there? I feel in my heart that i should get a formal diagnosis for him now rather than wait..i don't know why, i just feel this need i can't explain. I guess one of the plusses of getting a formal diagnosis is that we could get the funding for kids with ASD from birth to 6 years, that way we can get him all the help he needs to prepare him for school..

I would def push on getting "a" diagnoises as early as you can. the last year has made the most amazing difference to Xander. He can write, he can sit at a desk (where as before he would slide downa nd lie across the chair - low muscle tone issues = it fatigued him to sit upright) he maintains eye contact at times, he has an IEP at school which entitles him to teacher aide time which in turn helps him work on his goals (this semester we are doing eye contact, asking others to play, learning to have converstations/say hello/goodbye/social cues etc) and yes the funding helps immensly with OT, speech and also buying the sensory tools for school etc and we are getting quite a kit together at home. My next planned purchase is some gym mats for throwing himself into/falling onto and a soft tunnel to roll him around in. I shudder to think how we would be coping at the moment without an offical dx. I also know from working in the school system that often the "label" is a good thing. it make (most) teachers stop and think and keep in mind that this child has certain needs and requirements to get through the day. If that makes sense.

Hope your hubby did well at the interview!

Murraysmum - OMG on the daycare - that sucks! Is there anyway he could go in for one full day and a half rather than spreading it across three days if it is the support teacher hours that are the problems? Xander got expelled from daycare at 15mths so I feel your pain!!! Feel free to vent away. And a big congrats on the blowing kisses!!! we understand your excitement!

[lestyrox]

Thanks saram, i really appreciate your imput What you said about EI and the funding has definitely made me more eager to get a diagnosis ASAP. I think you're right about getting it as soon as possible so we can access the funding for all the programs and specialists Ethan will need. I've called Minds and Hearts and left a message. Ethan has an initial appointment with the OT in 2 weeks so that will be good. I hadn't realised how much trouble Ethan has with sensory stuff until his speech path sent us a checklist type thingy about sensory issues...Ethan ticks heaps of boxes for being under sensitive to movement eg he runs back and fourth all the time, is constantly moveing, jumping, spinning etc. He also had motor planning difficulties and gross motor difficulties... which is why he misspronounces the words he can say. I'm so glad someone made that clear to me, for ages i've been worried about how he says things and why sometimes he says a word clearly and other times he doesn't and now i know that its because his little mouth has trouble making all the sounds properly. I feel like i've just had another break through in getting to know my son. Having a name for the things he does is really helpful. Thats why i think a formal diagnosis is going to help me understand him better.

If anyone wants a copy of the sensory checklist thingy just let me know, although i'm sure most of you already know your little one's strengths and struggles.

Anywho, we haven't heard back about hubby's job interveiw yet..they said he's hear either way by the end of next week so fingers crossed!

I hope everyone's having a good day

[murraysmum]

oh i told them and they said let us know he has allready made 2 care workers quit they say hes so full on they cant handle it i deal with it 24/7 and i havent had a break down so yeah i think they need to train them better as the normal day care ladies delt with him for 3 mnths before a care worker was arranged so ihe can be looked after hes just alott of work

oh yeah i was so excited i bought him a new thomas toy as i have been trying to get him to show some affection for ages he does show it but he almost strangles you or taps you on the head like a dog

i have just been reasearching as much as i can and recording all the things he does daily so i can work on weak points

speach path is hard as so manny kids seem them now it took me 2 mnths to get a 6 week block and now i think it might take longer to get another found out the ot has a 7 mnth waiting list oh joy so im thinking of going to norsemen and kalgoolie and sussing out what services they have and the disbilty commision is trying to get me on the respit list but i wont hold my breath on that one

oh murray has started hittin himself on the head with his fists he does it randomly but with so much force i have no idea why hes doing it

[~Saram~]

Murrays mum - Hugs on the daycare situation, hope you can get something sorted soon. With the head hitting - it is usually a sensory processing thing or in frustration. For sensory processing - when Xander starts hitting himself we do some big bear hugs instead and encourage him to ask for bear hugs instead of hitting himself when he feels that way. Another good thing is to wrap them up in a donna and shake/jiggle them - easier to do when there are two of you - I can't do Xander by myself he is too heavy. We bought him a net swing and a body sock to try and help out with this at home and this is why I want to get a foam tunnel (this is what they use at OT) and roll/rock him up.

If it's frustration you will need to figure out his triggers like Christy suggested. We found sticking to a routine and doing lots of this will be next then we will... Picture cards can help too if you can get round to making them. I did find a link somewhere of picture cards you could just print out - I will see if I can find it again

Lestyrox - yeah the sensory checklist is amazing isn't it! My hubby said to our OT - how did you know all this stuff about our son :-) Especially the part about not being able to lick icecream properly - this blew him away as he now had a reason as to WHY his son struggled with these things!!!

[Lulu]

We had an appt with an OT on Thurs. She has identified a sensory processing thingo. Will get more info when she scores the assessment.

She picked up motor skills from his handwriting but personally I think that's bollocks because no one has taught him how to write, he isn't at school yet. I pointed that out but she said something about how he forms the letters but I still think its bollocks at this age.
Maybe it forms part of a bigger picture.

I was so exhausted from running up and down ladders painting for the last three days that I don't think I took much in tbh Something about him seeking extra information during quiet play and looking around the room alot, talking heaps etc.

Actually I'm still leaning towards the word bollocks. I can't help it. I most certainly agree his brain is wired slightly differently, I've been saying that for years, I can't quite see how those tests brought her to this conclusion. He was his usual chatty, very polite, funny self. No meltdowns, no frustrations shown.

OT wants me to take him to a Paed for formal diagnoses in case he needs help at school. She is going to get him into a group to get him ready for school which we will do, but I'm not sure he really really needs it (will do it for peace of mind). Kinder has been doing a sterling job.
At the 1/2 year parent interview I was told he doesn't call out at the wrong time, contributes well to all discussions, and although he will have a crap day from time to time he certainly "isn't the worst on for it".

I dunno, I can't help feeling cynical that he has been diagnosed with a sensory issue after one hour with an OT. Is that right?

[maz]

HI ya girls

Sorry that Ive been quiet...so many issues and we were away for a family holiday for 2 weeks.
QLD was great...Wilhelm had a ball but then when we went to NSW we realised it was to much and to long. We had bed wetting...even hitting ourselves in the head.

I got so grrr at inlaws......they just dont understand that he needs his own space and kept saying you have a bed here if you need it...its like they are trying it make us feel guilty for not taking them up on it.

So now we've been home for 4 days and we're still paying fo rit with attitude and swearing

going to grab a cuppa and read back....sorry for not making reference to anyone...need some time without amigo's at my feet to read your posts properly

[~Raven~]

Lulu I understand your thinking of bollocks. But then they are trained professionals and they look for things that might not stand out to you but add up to them as being typical traits iykwim. So part of the bigger picture as you say I'm not saying take her word as gospel but don't discount it.

M has never seen an OT because we went straight to the ped due to wanting him assessed before school started. He has seen a speech therapist and a psych though through the school.
It wouldn't hurt to even make an appointment because there is usually a 3 month wait and the year is running out! You can cancel it if you feel it's not nescessary or you can go along and talk to the ped about stuff. It is exxy though for the first visit but there is the medicare safety net so if you're up to it you really don't have a lot to lose financially.

The only thing I'll say is that if it becomes evident that he needs a learning assistant (LA) and it is some way into the school year before he gets asssessed then you may not get one.

Funding applications for the year has to be in by end of Feb so if it's not done then there is no LA for the year! If the application is in before the cut off then it has to go through the system and then the LA position has to be advertised and interviews blah blah etc. M didn't get his till 2nd semester in prep and while he was doing OK, the improvement in his frustration and mood improved remarkably. That's why he has a LA. It's not so much for him academically, although he is a visual learner more than an aural learner, but it's helping him learn coping skills and resilience when things don't go how he thinks they should. We still have head punching frustration episodes if he's had a bad day but they are easier to manage.

Sorry bit of an epic!

[Lulu]

Yeah, I will do it first thing Monday. I'm not sure why she thinks he might need an assistant, maybe to help keep him foccused? Will still get in the line jic...

He can go a bit nuts if things don't go his way though. That part does worry me. In CC and Kinder he is around some very patient and understanding people. He might not get that at school. I really want him to attend the local, but if it doesn't work out there is a Montessori about 15 mins away.

[barbie-up]

The speech therapy where Alex goes has a jumpoline with mattresses of foam pieces and Alex loves it. He also likes to be wrapped up in a cot sheet and says sometimes that he 'can't feel himself' - especially at bed time. I've started giving him 20 firm massage like strokes and make sure he is tucked in firmly.

I think that kinda and creche - they like how the routine is the same and that they're all doing pretty much the same thing and that they can watch the others if they're not sure. I'm hoping school is just a bigger version of that.

I've also heard that the helping children with autism funding is being extended to three years, has anyone else heard this ?

[christy]

Barb I hadn't heard anything about an extension

Lulu, when I started reading about sensory processing disorder, it was like a lightbulb. Matilda seeks sensory input, she needs to feel stuff rubbing against her, so she rubs her foot along the ground occasionally, she knocks into walls, she doesn't notice when she's fallen down that it should hurt a bit.... She seeks those feelings, so she doesn't avoid them She also seeks feeling dizzy, so she loves to climb high things, jump on the trampoline, swing, spin, twist, jump off things...... Thats a sensory processing issue when its gets to be something that means they can't stop moving... they are in perpetual motion, or should we say a "cyclone"??

I have an awesome book that explains it really well called "an out of sync child" I will bring it with me on holidays today, if I can find it I may have lent it to someone else... Otherwise, I'll bring some other books I have.

Sarah lent me heaps when we first were told that Matilda had it. We had the obvious issues with her with auditory processing, she had panic attacks with sirens, and if we were in loud places she disappeared and lost it entirely.

We are off on holidays!!! Leaving today to travel down to Melbourne... wish us luck!

[Lulu]

Woooooooooo Christy!

Barb - I heard that The Good Guys just donated a huge amount to go towards Irabina - hope it's true about extending the help.

[murraysmum]

we are currently moing house and murrays room is the last to be packed we are actully leaving it till he goes to holiday care at daycare lol sneaky i know we moved some stuff yesterday and it was unbearable he saw the boxes go and lost it we hae let him walk the new house pick his bedroom let him suss out eery cuboard but i think once we move in i might have a week of tantties plus do is going away till december for work so ill be on my own

i found if i wrap him tight and rock he calms down thanks for the sujestions hes getting heavy so i sit on the couch and do it

hes into when he sees gravel he must put it in his mouth its so nasty im trying to find time to read some of the books ive gotten out but by the time hes in bed im so dammn zonked i just want to sleep


we allso have dps daughter for the holidays she hd me in tears yesterday she dosent understand that sometimes i need to treat murray diffrently anyways she kept touching him and trying to get him to play a game with her and he cracked it big time and had such a meltdown dp thought he was going to stop breathing all i had to say was when he hits you the first time he wants you to leave him the hell alone plus hes not well atm so im dealing with a cold broncitis the flu and conjunctivitis he wont let me clean his eyes or wipe his nose so frustrating

sorry for that girls had to get it out

maz here are some massive big hugs your way


good luck christy

[mizzme]

Hey Ladies (apologies for hi-jacking your thread)

My name is Samantha. I have 2 boys, and my eldest son was diagnosed with Autism a month ago. Its taken me about a month to process it I wasnt expecting "Autism" .. if anything i was expecting Global Devolpement Disorder.. obvioulsy i was way off track.

I guess im looking for a support group .. just some other mums to talk too.. i feel so alone.. .. i was looking to join like a playgroup or something around my area who has a 'special needs group' where i could talk to other mums, but there isnt anything around my area..

I look forward to chatting and getting to know you girls.

[christy]

Hi mizzme & welcome

We've been a bit quiet here lately, things happening for everyone I suppose.

We've just gotten back from holidays!!!! It was good and hard at the same time. Matilda did really well the first few days, she knew what was happening and did well with the car. We drove to Melbourne from Sydney with a few stops on the way there & back. We got to visit with the gorgeous Maz and her super kids Matilda and Wilhelm are amazing to see together, they are similar beings... then we headed out to Melbourne and stayed with some friends there & got to see the loverly Lulu and ~Raven~ while there. Matilda coped for most of it really well, but there were times when we didn't have anything set planned or something went not according to her plan and she didn't react well... a few flappy episodes and a couple small meltdowns, but all in all that was amazing!!! Her food aversion was the worst obstacle, and we just gave up and decided to worry about what she's eating when she settles at home. So tonight, for the third time in a week will be bolognaise...

I've got a lot to do now with her EI package.... and we will get there..... just with the GA and scope a few weeks ago and then holidays, well I put that on hold. Now while on holidays she got another UTI which means that surgery will be brought forward, who knows when we'll get onto it!!!

[lestyrox]

Hi all, sorry i've been MIA lately, i've been flat out with my uni work..trying to get assignmnets finished with 2 screaming boys is not easy.

Hi Mizzme, nice to meet you i know how you feel. We're still in the process of getting DS1 disgnosed but i've known he's different for a while. Its hard to come to terms with isn't it? This whole autism thing can leave you feeling so isolated and alone. There are a great bunch of ladies on here to chat to

My youngest turns one this month....this year has gone so fast but to be honest i wouldn't want to go back to where i was 6 months ago. The first 6 months of DS2's life were hell. I definitely underestimated how stressful having another baby and a SN son is. BUT all is good now.....
Anyway i just wanted to share this with you, DS2 got out the walky thingy (you know the little cart things they push around to help them learn to walk) that i bought ds1 for his first birthday that has been gathering dust... and you know what...he used it! i mean he stood up and usued it properly, he didn't sit there and spin the wheels like his brother did when i gave it to him... it was just so...releiving to see him using properly and loving it. I just wanted to share that I love ds1 so much and i love the things that make him different but it is just so nice to see his younger brother developing 'normally'. He waved the other day, something ds1 didn't do until well over 2, and still doesn't really do now. It bought tears to my eyes.

I am sooooo proud of both my boys and i am so proud of how far Ethan has come, its just such a weight of my shoulders to see his little brother reach all the milestones that Ethan missed. There isn't the 'fog' there that Ethan had. Of course if it ever turned out that ds2 is on the spectrum as well nothing would change. I love them both so much.
But there is something so magical about watching ds2, bop to music, wave, climb etc all the things Ethan had trouble with.

Anyway sorry to glog the forum with my ramble. I just needed to share because i think its only something other mum's of kids on the spectrum could truly appreciate

[MistyFying]

Lovely ladies... one of our members has some questions about helping a little one who has aspergers enjoy little athletics... can you provide some advice? Thread is here.