Aspergers/Autism/Sensory Integration Chatter #2

[~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

[~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?