Aspergers/Autism/Sensory Integration Chatter #2

Christy, big :hug: hun.
I'm sorry life has been so tough lately. Lack of sleep is horrible and it makes it so hard to cope with everything doesn't it? I'm praying that Matilda settles down for you and you can all get some much needed sleep. I'm here if you need to chat, sometimes its good to just talk to someone and get it all off your chest (but i'm sure you already know that ;)) I know how you feel about not feeling supported. I feel like the only person i have to talk to about everything is my hubby (and you girls of course) and there's only so much of my whinging he can take lol.

Murray'smum- the kicking and hitting sure does wear thin doesn't it? We're going through a similar thing atm where Ethan keeps kicking and hitting his little brother. I think he just does it to see the reaction he will get. I've noticed though that he will always hit or scream at his brother when his brother is upset...its like he acknowledges that he's upset but he doesn't know how to deal with that so he hits him..very frustrating but i guess at least he's showing empathy even if he doesn't know how to express it properly.

Well this morning i spent 2 hours following Ethan around with a specimen jar trying to catch his wee. We need a wee sample to go with the blood test tomorrow...easier said than done!! so far he's peed on the floor 4 times and each time i dive to try and catch it but he's finished before i can get the jar under there :wall: I'm dreading the bloodtest tomorrow, i'm just praying its all over quickly and Ethan doesn't struggle too much.

On another note, i was talking to my brother in law who's a doctor about how i'm not sure where to turn now with getting Ethan diagnosed and he directed me to the ASPECT website. They offer full assessments and we can get the results as quickly as a month after the assessment! Its $850 but i think there's a medicare rebate, plus i'm willing to pay it to get a formal diagnosis, it seems a lot easier and quicker this way...has anyone heard of this? Apparently its a 6-8hours evaluation with a few different specialists and they observe the child as well as ask them to do specific activities throughout the day and then record what the child was like in different situations...it seems quite thorough..i'm thinking of calling the hotline today to get some more info.

LR the wait for Aspect can be long hun *hug* but its a good one! We decided not to wait the 4-6 months and went to Quirky Kids instead.

I went to Aspect last week to drop off all our Autism Advisory information... the offices are actually between Matilda's school and Jovie's Daycare, so I drive it 3 times a week :D

i had to do this and in the end i got a freezer bag bandaid it to his skin and duct taped his nappy on sounds mean but after 3 days of chasing him i had given up

had my assment today im bloody exhusted they saw murray at daycare and spend 3 hrs with me going through that book i never thought it would end

im seriously at my witts end with him nothing i do helps

i got the grand total of 6 hrs sleep last night woooohooo but i was up at 4am not beeing able to get back to sleep so lame

they said it will take a few weeks for the report and i will have moutains of paperwork to sign

i just want some help i want someone to tell me im doing the right thing that im not crazy someone to let me cry scream and get all this frustration out

where is that person do they exist

:

---

i had to do this and in the end i got a freezer bag bandaid it to his skin and duct taped his nappy on sounds mean but after 3 days of chasing him i had given up

---

:rofl:

I was tempted to do the same thing but i didn't think it would work lol.
I'm sorry you're feeling down murraysmum, parenting is hard enough and then if you through a special needs bub into the mix its crazy. You're doing an awsome job honey, you love Murray and you're doing your best and thats what counts :hug:

Christy, whereabouts is quirky kids? Is the waiting list shorter there? 4-6 months sounds like such a long time to wait to get into ASPECT and so much can change in that time...but of course we'll wait if we have to. Have you read the book 'Quirky Kids' by Perri Klass and Eileen Costello? Not sure if its related to the other quirky kids but its a great book, very informative.

Well I'm on the edge of my seat atm....Ethan is getting his blood test as i type this... he's with his daddy and i'm just praying it all goes ok for my little guy :pray: i hate putting him through this but i know it has to be done. I think big cuddles will be an order when he gets home.

yeah he tried and failed lol when the ldy took the smple shes like oh there isnt much hahah told her if she wanted more she could chase him for it

i had to take murray for bloods and that was bad he screamed hit moved ect
its horrible exsperiance

we have 2 more words im so proud

yum yum and why hahahah its not much but they come out clear so its 2 clear words yay

Good job!!! 2 words are 2 words!

I've been watching some utube footage of Temple Grandin talking about early intervention... she's amazing and a high functioning Autistic.

Matlida goes into hospital on Thursday for a kidney work up to see how she is functioning... she has to get a catheter and lay still for 20 minutes x 3 times..... eeeeekkkk!!! We've been practicing in the afternoons, staying still for the cameras.....

Today is the day.... I'm scared stiff, but I warned them it would be hard... let's see if they listened to me.

:hug: Christy.
I'll be thinking of you today. I hope Matilda takes it all well and is good for you.
Let us know how you go xo

aww hun big hugs hope it all works out for you

Hi gals, wow you ladies have def been jumping some hurdles while I have been away! DH has given up his computer addiction (WOW - if you know what that means I sympathise with you) and we have been sorting through a lot of relationship issues which has been great as we did our big 3 1/2 wk trip to Brissie so lots happening. good news-my super campion of a son held it together for the entire trip - GOD he is amazing! We took his body sock and his Grandma bought a small tramp - bless her heart but he was freaking amazing!!! Walked down the isle in his "good clothes" and everything- yes he ditched the shoes as soon as he sat down in the church but who freaking cares - last time we dressed im in formal clothes we had tanties for hours.

The only downside was a charming conversation I had with a friend of the bride and groom who is a psychology researcher (specialises in advertising and the effect it has on children) who sat through the dinner and proceeded to tell me I should get Xander reassessed as he clearly does not have Aspergers - because he talks so much. WTF. The in the next bredth went on to tell me about the professor she worked with once who you wouldn't even know had Aspergers except he was so blunt to his students. Gawd I HATE and yes strong word but I freaking HATE these experts who sit in their very small offices and decide they know everything and can watch our kids for 15 min and tell us what is wrong with them.

Reading over the journey some of you are on at the moment just breaks my heart because we have been right were you are now being told it's this,not that - autistic trait but not autism, ADHD - it is all so bloody familiar. All i can say is go with your gut! We are so happy with the amazing progress Xander has made in the year he has been formally diagnoised. Absolutely bloody amazing!!! My only advice is get a good OT - a lot of kids with autism are diagnoised with ADD/ADHD due to sensory processing issues which a qualified OT with experience in sensory processing can help you with! Also the low muscle tone/poor coordination also related to sensory processing!!! Our OT basically explained it like being deaf except it is their nervous system that is over or under stimulated and doesn't get the correct feedback/information to move the muscles the right way.

Hugs to you all as you travel this road especially Christy and Lestyrox with your medical tests hope they go as well as they can!

Maz you are doing such a fantastically brilliant job with Wilhelm - I so wish we could have caught up while I was down south - next time I am def calling in :-) Hope you are having a fab time in Brisbane!!!

Murraysmum - hang in their chicky - you CAN do this!!!

HUGS to you all

im hanging by a tiny iddy bitty thread after this weekend if he can destroy it he will if he can eat it he will if he can throw it duck

i dunno where the agression is coming from im too tired to phycoanlysis it he has speach path on tuesday still no ot referal

he has pead app on the 14th of october

still waiting to hear back from disablity services prob be good if my other half actully collected the male god men are idioits

anyways things are ok here rocky but ok

toilet training well when i find the secret out on how to make him do it ill let you all know lol

oh hun don't push the TT. Kids on the spectrum are notoriously late TT'ers. Often times they don't feel the need, so its a physiological thing.... if it isn't working, try again another day ;) When he gets it, he will get it :hug:

Have you started anything to help him? I remember with Matilda, at 2 1/2 we hadn't even had autism cross our minds... I mean autism means sitting in the corner rocking right? I didn't know that my child who was extremely frustrated with life. Try finding his triggers and figure out if you can avoid them for now, os what you can do to help. Try rewarding him when he's behaving good. I mean even when it seems silly, but Matilda used to get a tick tac for every isle we got through at the shops without screaming... it worked for most of the shop... than she got a chuppa chup at the check out so I could get through. I had to bribe her into good behaviour just so I could get through the shops without screaming, than we would get home and she would scream for 3 hours to de-stimulate.

I had to become a robot for her to tell her what was happening every morning, no surprises etc etc. Now that we know what she has, it all makes sense.... But she's 5 now... and it sucks and is hard, but a lot easier than it was.

My DS wasn't TT'd till he was 3.5. We'd be met with screaming and refusal so decided to leave it. We still have issues with holding onto poo though. We don't have accidents but he gets very crabby due to the tummy ache he gets :rolleyes: One thing I noticed was that he wraps a blanket around his belly when he needs to go (which he also does for anything that hurts, even a cat scratch or splinter, which he will wrap up with the bottom of his jumper) I fully believe that it is because he is overly sensitive in that region and he doesn't like the sensations.

I think what happened was a combination of maturity, him being able to speak (because he didn't till he was 2.5) and seeing other kids go at daycare.

Hi Saram :) Its been a while since we chatted, its great to hear from you! YAY for Xander being so awsome while you were away :clap: and poo to that lady who thought she could judge Xander after only meeting him for 15mins, people like that have no idea.

Well i'm still feeling lost. I really don't know what to do at the moment. Ethan's appointment with the pead. left me so confused... i feel like its important to get a formal diagnosis for Ethan. I want someone to sit with him for a day and really look at him, all of him. i want them to watch him and talk with him and get to know my special boy. Ethan is so complicated and unique and i want someone to see that and appreciate that and give us a thorough and accurate diagnosis....am i dreaming!? I've been thinking of taking him to ASPECT and getting a formal diagnosis, as far as i know a panel of experts watch him and interact with him over 6-8 hours and then we get the formal diagnosis in as little as a month... problem is there's a 4-6month waiting list and it costs $850. I am seriously thinking this is the best way to go but i'm not 100% sure, a friend of mine who's son has been daignosed took him to Tumbatin?? has anyone heard of this?
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.

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.

Anyway i'll stop ranting. I hope everyone is having a good day:)

Christy, how did Matilda's scans go? I've been thinking of you :hug:

i found its easier to get it done now as i think if he was any older i wouldnt cope

my other half keeps telling me to push tt but i cant as hes not showing signs anymore he regressed pretty far back since he was sick

murray does that too when hes insecure or theres change he wraps his blue minki blanket round his head and lays as still as on the floor

we had a tanty this morning cause daddy wouldnt let him pat his favriote horse its amazing to watch tho these big race horses who dont have paitence for adults will stand still and let him pat tugg poke and even scream and flapp his arms i was dumbfounded but they seem to sence something we dont hes the same with dogs he dosent kick or hit but he gets overexcited

when we go shopping i constinly feed him fruit bickkies jatz give him drinks if hes eating hes not screaming

but hes figured out where my other half keeps the choclate and cool drink and he will raid the fridge and throw tanties till i crack it and pour a full bottle of coke down the sink to stop the mayhem same with choclate i have to put all wrappers in the fire as he will rip the bin apart looking for them

we have decided to filter his water as other half gave him tap water and he made himself sick over it so filted only oh and spag in a tin its all he will eat now and its driving me nuts he eats it cold and it looks nasty

i hope we alll get some sort of a breakthrough this week we all need it i think

lestyrox: Hun have you tried Minds & Hearts Brisbane / QLD? They do a diagnosis and also they spend time with you and partner first then time with the child. It wasn't too expensive either.

Another option is I know of where I live ( About 3 ish hours from you we got our diagnosis through our local community health through a telelink with a fantastic Dr at Westmead Childrens Hosp - Dr Sloane Madden. Is this service available through your local community health or even Coffs Harbour for that matter.

I urge you to get a diagnosis earlier as our son didn't get until he was 2 months from starting school and desperately needed early intervention but it was too late for him to obtain it due to him starting school and to this day we are still struggling getting him to the basics which he should have had before he started school.
Read the Helping Children with Autism (HCWA) Package ( see below )
Also any child who has a diagnosis can also obtain 20 subsidised visits to a pychcoligist. ( I can post more about this including Medicare numder that your local doc / paed ( they should know this ) need to use on the refferal..... Just let me know if you want this.

I have some numbers that might help you and others ( you may already know them ). I am not sure if this is available in all states but it certainly applies to NSW.

Autism Advisor Program funding for children under 6.
1300 978 611

I am also posting in some additional information as I know all too well how no one seems to keep you in the loop and let you know what is happening,

If I can help anyone just PM me.
I am no expert in this but if it will help others and their children, I will try to pass on any information that I have been sent or know as I find that it has not been advertised very well and I only found out through another person who told me but this program is worth its weight in gold.

NSW Autism Advisor Program
Background
The Autism Advisor Program is a component of the Helping Children with Autism (HCWA) package
announced by the Australian Government. The Program is funded by the Department of Families,
Housing, Community Services and Indigenous Affairs (FaHCSIA) and will be delivered in NSW by
Autism Spectrum Australia (Aspect). It will be delivered by other organisations in the other states
and territories.
Overview
The Program will offer families and carers the following:
? impartial, evidence based information to support the making of informed decisions about a
range of early intervention options that meet the needs of your child and family
? information about all the components of the HCWA package
? application for the HCWA early intervention funding package of up to $12,000 (up to $6,000
in any financial year)
? determination of your child?s eligibility for the HCWA $2,000 regional and remote payment
Eligibility
The program is available for families and carers of children who:
? are aged 0 - 6 years (regardless of whether or not they have commenced school)
? have a conclusive diagnosis of a Pervasive Developmental Disorder (see below for more
information)
? are citizens, permanent residents of Australia or would meet these requirements
Further, from the child?s sixth birthday until they turn seven years of age special consideration may
be given which would allow continued access to the funding. This will be determined by an Autism
Advisor on individual circumstances, based on guidelines provided by FaHCSIA.
Diagnosis Requirements
An acceptable diagnosis is one of the following listed in the Diagnostic and Statistical Manual of
Mental Health Disorders (DSM) IV under Pervasive Developmental Disorders:
? Autistic Disorder Asperger?s Disorder Rett?s Disorder Childhood Disintegrative
Disorder Pervasive Developmental Disorder ? Not Otherwise Specified (PDD-NOS)
The child will need a written Australian diagnosis made via one of these options:
? under the new Medicare items through the Helping Children with Autism package
? state or territory multidisciplinary diagnosis (or equivalent) - which will include diagnosis
services provided by state/territory Autism Associations
? a paediatrician or psychiatrist or private multidisciplinary team (a multidisciplinary team
must include a psychologist, speech therapist and occupational therapist with autism
expertise)
If your child was diagnosed in Australia prior to 27th October 2008 then the following will be
accepted:
? a written diagnosis made by either a psychologist, speech therapist or occupational
therapist with ASD expertise
? evidence of the current receipt of early intervention services from one or more of the
following: behavioural interventions developmental and social learning interventions
therapy-based interventions family-based interventions
Last updated 17 April 2009 Page 2 of 2
Autism Advisor Program (NSW), funded by the Department of
Families, Housing, Community Services and Indigenous Affairs
Interpreter Service
An interpreter service can be arranged if required. We have access to interpreters who cover more
than 120 languages and dialects as well as Auslan. To organise ring the Autism Advisor Program
and let us know what language you speak and we will book a time to call you back with an
interpreter.
Application Steps
Step 1: Check your child is eligible - ensure that your child meets the eligibility requirements
listed on this sheet
Step 2: Register by completing an application form and consent form
o Contact the Autism Advisor Program for an application form & consent form (see
contact details at bottom of form)
o Ensure that forms are returned to the Autism Advisor Program with the following
documents:
Copy of diagnosis
Copy of treatment plan (if available)
Proof of your child?s birth date
Proof of your child?s residential address (e.g. utilities or rates notice)
Proof of your child?s CRN ? Centrelink Correspondence / Confirmation
Any parenting plans or court orders (that may impact your child?s residence)
Step 3: Attend an appointment with an Autism Advisor
o The Autism Advisor Program will assist in determining your child?s eligibility for the
Program
o An Autism Advisor will make contact to book an appointment if your child is deemed
eligible. You can choose the option of face to face or phone appointment
o The Autism Advisor will advise you at the appointment of early intervention service
options available through the HCWA package and non HCWA options
Step 4: Receipt of Letter of introduction
o The Autism Advisor Program will provide you with a letter of introduction to give to
service providers of your choice. Services will be paid directly by FaHCSIA for any
services your child receives.
Receipt of Regional & Remote Payment
o Families who live in an outer regional area or beyond, according to the Australia
Bureau of Statistics? Accessibility/Remoteness Index of Australia classification, will
receive a one off payment of $2,000 for each child diagnosed with an ASD in
addition to the funding package of up to $12,000 per child.
o You must be registered so that the Autism Advisor can determine your eligibility for
this payment
For Further Information
Autism Advisor Program (NSW)
PO Box 361 Forestville NSW 2087
T: 1300 978 611 F: 02 9975 1633
E: autismadvisor@autismspectrum.org.au
Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA)
W: www.fahcsia.gov.au/autism
T: 1800 289 177 (Helping Children with Autism Inquiry Line)

With the Autism Advisory service, it only applies if you have a diagnosis as well... I just went and had a meeting at Aspect on Friday. They sit down with you and tell you what services are available to you in your area & where the gov $$ can go. I've had to phone around and see what I can do...

Thanks Mrzbaby, that info is really helpful :) I've called the Autism Advisory Program hotline and left a message, they should call me back tomorrow. Its still all a bit over my head but the info you provided helped to clear a few things up. I don't think the report the pead gave is going to count as a diagnosis. He said himself that it was his 'opinion' and not a formal diagnosis so i guess i need to get the diagnosis before i can think about funding *sigh* so it sounds like i'm back to square one. I called ASPECT and left a message with the diagnostic departement, i want to know how long the waiting list etc etc because if its really long it might be worth taking Ethie to another place like Minds and Hearts.. thanks for that Mrzbaby i might have a google and see what i can find out about it. We've only just started on this journey and already i'm exhausted. I am thinking that it might be easier to get a diagnosis from ASPECT or Minds and Hearts or one of those organisations because it sounds like to get a diagnosis through peads, psychologists etc etc takes a long time and causes lots of frustration.
We're hopefully moving to Coffs Harbour soon (hubby has a job interview tomorrow, fingers crossed) because we've decided there is more support there for Ethan. I think once we settle in there i will get the ball rolling as far as getting a formal diagnosis.

Thanks for the advice everyone, i really appreciate it ;)

For school aged children:
another good place to go is Welcome to Positive Partnerships Online Learning Portal
They have an online learning portal you can register to use ( upper righthand corner in green writing - Click there as a new user )

it is aimed at school aged children but I found it helpful for both... and it is free!!!

AFM: I don't live near a large city so I find any piece of info helpful. I am lucky that we do have resources here where I live but like many the spaces are limited and waiting lists long.
The thing that furstrates me the most is that not one professional had chosen to inform me about what my child was entitled to through this program I mentioned above. Many Professionals assume you have the knowledge ( they don't mean to but I think they just assume ) for me it was ears to the ground that I discovered this program.

As Christy said ( I tried to mamke it clear in the originaly post ) you do have to have a diagnosis for some this is very hard.

When my son was diagnosed. we had the disgnosis and that was it. No help or intervention was offered it was like ' congrats your son has blah blah' ( this was no ones fault including the Dr who diagnosed but again the system i guesss you could say assumed I knew where to go.... I walked away with my letter had no idea what it even was and had to try to start finding where to go for my child to get the extra support he needed. Apart from the diagnosis being mind blowing the mental strain trying to find support was even more so.

As I said I am no expert and far from it but if I can be a vehicle of information to help others and their famillies I am more than happy to...
Em

i live in the middle of nowhere too but i find the ppl here help so mucch my speach path and pead are amazing his report is 5 pages long took me ages to read through it and says he has refered on to country disablity services but there he used alott of jargon but basicly said it is autisim im just waiting back from the cds to find out there findings and im on my way i know there is a early intervention in perth but thats 1500 kms from me and costs alott to fly even to drive so im hoping one day i can aford to go there

yesterday his daycare told me to cutt him back to half days as theyy could only get a support worker for 5 hrs so here comes the headake i would have to drive in and drive out then drive in again to pick him up then drive in again to pick dp up from work its 26 kms around trip in and back times that by 4 and its just plain mean to coop him up in a car nearly all day so he can wat attened daycare for 3 hrs

so thats my whinge for today lol

he has speach path today lets seee how that goes he gets frustrated and hides under the tables his speach path jen is such a sweet heart so paient with him she really is a god send we are trying a timeline atm like wave hello ect with pictures on velcro hes slowly getting used to it but still wont wave bye or say it he says it to me and my partner and at daycare but not at speach path lol dunno what thats about

oh and a yay post hes blowing kisses :dance: its not all the time but he finaly did it hehehe first time was last week

Mrraysmum- YAY for blowing kisses :clap: 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 :lol:

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! :o 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!!!!

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

:

---

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!

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 :)

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

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!!!

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 :redface: 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?

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 :rolleyes:

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

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!

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.

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 ?

Barb I hadn't heard anything about an extension :dunno:

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 :redface: 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!

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.

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

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. :)

Hi mizzme & welcome :hug:

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 :D 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!!!

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 :)

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.

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 ;)