Aspergers/Autism/Sensory Integration Chatter #2

[murraysmum]

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

[lestyrox]

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

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

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 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.

[murraysmum]

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

[christy]

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.....

[christy]

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

[lestyrox]

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

[murraysmum]

aww hun big hugs hope it all works out for you

[~Saram~]

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

[murraysmum]

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

[christy]

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

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.

[~Raven~]

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 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.

[lestyrox]

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 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

[murraysmum]

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

[mrzbaby]

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)

[christy]

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...

[lestyrox]

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

[mrzbaby]

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

[murraysmum]

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 its not all the time but he finaly did it hehehe first time was last week