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New to this and looking for friends :)

Submitted by Lestyrox on Tue, 30/06/2009 - 4:02pm.
Hi all, I'm new to the forum, I moved to Grafton with my hubby and two boys about 3 months ago. Recently we've discovered my eldest son (nearly 3) quite possibly has autism. To be completely honest with myself i guess i've known he's 'different' since around 1 year old. It took him starting day care 3 weeks ago for me to realise that the 'quirks' i've been seeing are all signs of autism. To make a long story short i always had my suspicions that my beautiful boy was autistic but i guess i was in denial and prayed to God he'd grow out of his 'quirks'. Well when he started day care the staff had concerns about his behaviour straight away, and once i was alerted to it i started reading, and reading and reading! The more i read the more i realised that my son is autistic. I cried and cried at first but now i realise that autism is not a death sentence and my gorgeous boy wouldn't be who he is without his 'quirks'. I took him to see Dr. Harding here in Grafton and we were referred to Dr. Naidoo in Coffs but unfortunatley he is all booked up until late September so we have an appointment with Dr. Budd (also in Coffs) but again we can't get in until August. So now we're just waiting and taking the time to get to know our son better. I don't get a chance to get out of the house these days, i'm a stay at home mum to my two boys (my eldest goes to day care 1/2 days friday) and my youngest is 8months old. I'm also studying Primary Teaching by distance. I'd love to get in touch with some other parents going through the same thing. I've just started my son on the GFCF diet and so far i have noticed subtle improvements in his temperament but i am a little daunted about the whole thing. Would love to here from people and make some friends who understand this journey. Sorry for the novel :) Cheers, Celeste.
‹ The Best Advice we received - just wanted to share Quoteable Quotes ›

Hi, Welcome, and I'm new too : )

Submitted by alisonandchester on Thu, 23/07/2009 - 5:59am.
Hi Celeste, Hi so glad it sounds like your on the right track with getting things organized for your son. I was sorry to hear that you have to wait so long for an appoint with the paediatrician, that must be awful, my father is a GP, it all seemed to move very quickly for us, so I'm hoping your wait moves very quickly from now on. I am the very proud mother of Chester, aka Chubb (he had VERY chubby cheeks as a bub)! He is just 2 1/2 yrs old, and was suspected to have Autism by his Dr at 22mths and recently we had this diagnosis confirmed at Tumbatin in Sydney. Not a shock for me. Like you we kinda always knew deep down that Chubb was different. Don't get me wrong developementaly he was right on track, except for speech, he just had his little quirks : ) We have been on the GFCF diet for about 3mths or so, and for us it had relatively instant and astounding success. Initially I too was overwhelmed with trying it. I absolutely didn't think it would have an affect, but I didn't want to have not tried something as simple as a diet change. Anyway for us what a difference. However I am very very strict with it, so maybe that has something to do with it, as a lot of people I know who are trying it aren't on it 100%....but who knows I believe every child is different and so therefore they're all going to respond differently. Anyway Chubb had absolutely no words, then we did a makaton signing course through EI and he developed about 10 words, then they dropped off, then we started the diet and wow! Within 2wks he had topped about 25 different words in a day and 3mths on he has almost topped 100 different words in a day! It was amazing, and I totally agree with the cloud being lifted description, as that is exactly what it was like for us. I also read that it can take about six months, however the dietitian didn't think it would as Chubb had not much gluten in his diet as it was, and apparently that's the one that takes the longest to clear out. About the full on behaviour after starting the diet! I also had this, it was like if he had the slightest slip up with gluten or dairy he'd be 10 times worse than prior to the diet. I remember talking to my Dad (Dr) and he said it was likely because his little system is so clean now that the slightest insult has a big impact on him. He also said that it just shows how much he needs the diet, which was helpful because I was almost thinking it was easier (temperament wise) with the cloudy little guy off the diet! Glad I stuck it out though, as that has definitely died down and I think as long as his diet 100% he's awesome. Anyway, sorry rambling on and on nice to meet you Alison [IMG]http://i184.photobucket.com/albums/x259/alimel1978/chester1.gif[/IMG]

Hi Alison, nice to meet you

Submitted by Lestyrox on Fri, 24/07/2009 - 12:45pm.
Hi Alison, nice to meet you :) Iits so nice to meet new people and chat with other mums that understand what its like to raise a child with ASD. It sounds like our stories are similiar, both our son's have their 'quirks' Do you mind me asking what your son's are? My son's quirks started around age 1 when he started having massive tantrums and became obsessed with doors, he would spend ages opening and closing any door he could find, then came lids, and no he's absolutely obsessed with plugs (yep the humble kitchen plug lol). He also 'spaces out' acts 'deaf' at times and has gross motor clumbsiness. Like your son, mine reached all his milestones (although some were a little late, he didn't wave or point until 2 years old) although at around 2 he was only say 3 words, mumma, dadda and uuh for up. He spoke his first 'real' word when i was in hospital after the birth of his little brother. Someone had sent me flowers and he looks at them and said 'wower'. Now flowers are one of his obsessions and everytime we walk past the flower bush outside our house he MUST pick 2, one big one and one small one lol. Between 2 and 2 1/2 years his vocabulary exploded and he started naming things and talking in 2-3 word sentences. Today( nearly 3) he will attemp any new word however he has no interactive speech. The best way i can describe it is that he speaks in nouns and statements. He can name lots of things and point out differences like big and little, old and new, wet and dry etc. He knows his whole alfabet, shapes, colours, can count to 7 etc etc but he can't tell me how he's feeling or if he likes something. Its frustrating for him and me and it makes me a little sad that he can't tell me how he feels but i have faith that with speech pathology that will come. I am really looking forward to next months appointments, we see the speech pathologist on the 26th and peadiatrician on the 27th. At the moment my son is having terrible tantrums that more often than not are esculating into meltdowns daily so i'm hoping the doctor can offer some advice. I'm not holding my breath that we'll get a diagnosis straight away, from what i've read it takes many appointments with different specialists to get a formal diagnosis. Do you mind me asking, what steps did you take to get a diagnosis for your son? Was he diagnosed by a pediatrician? or did he have to see a team of specialists to get a diagnosis? I'm glad the diet has had such a positive effect on your son thats great! Can i ask, how long did the 'full on' behaviour last after you started the diet before you saw improvements? My son has been on the diet for around 5 weeks now and to be honest i'm feeling pretty disheartened. I noticed subtle improvements the first week but since then his behaviour has been horrible, worse than before the diet even. I am very careful with what i feed him and read the ingredients on everthing to be 100% sure he's not accidentily eating gluten or dairy. I'm tempted to give him some 'normal' food to see if the diet really is making a difference but then i'm scared incase it is helping and his behaviour gets worse and then we're back to square one. Sorry for the long rant, i don't get a chance to get on the computer for too long these days so i have to get everything out in one looong email. Are you in the Coffs area also? My email is sinclair007@bigpond.com.au if you want to get in touch. Cheers, Celeste

Hi Celeste, Can't chat for

Submitted by alisonandchester on Sun, 26/07/2009 - 5:41pm.
Hi Celeste, Can't chat for long as I am, as of very recently, a single mother so my little man may need me very soon. Yes we are from Coffs and my father is actually a GP and referred us to Dr Naidoo for our diagnosis, then we went on to Tumbatin for a formal diagnosis just recently. The whole thing went reasonably quickly for us, however not sure if that's cause Dad is involved. Chesters little quirks are lining things up and spinning.........always spinning! and he's not afraid to tell you how much he loves it either : ) Other than that I guess when he was littler it was relationship quirks, like he wasn't bonding with relos and close friends etc. It's weird cause he is the happiest most loving little man, just I guess those people weren't important to him. We really got concerned when he started having eye blinking episodes and holding his head back when he walked. That's why Dad referred him to the Paed, he thought he might have been having a type of seizure. Anyway, his diet was very instant and very successful for him, but he didn't eat alot of gluten prior to the diet and the dietitian says that is the nasty one that can take about 6mths to get out of their systems, so maybe it will take a bit longer for your little guy. Thanks for your email, would be good to chat. Ours is alisonandchester@hotmail.com Take care Alison

Forum friend

Submitted by Proud-Mum on Mon, 06/07/2009 - 12:39pm.
Hi, Celeste, We were in a similar situation to you. Our son started school this year though so I am back at work now. Prior to that I felt like a prisoner in my own home! The delay in appointment seems pretty standard but when we eventually got the diagnosis the "label" actually helped us. It allowed us to just get down to the business of helping our son knowing that we were definitely on the right path. Are you with an Early Intervention service in Grafton? If not it might pay to look up your local Early Childhood Intervention Centre as this helped us a lot in Coffs. The hours weren't sufficient but better than nothing and we learned a lot. Also, we read heaps too and found the Coffs Coast Autism office has a library of autism related books and DVDs if you ever find yourself in Coffs. It costs us nothing to borrow from them and you can take the kids in with you too if you need to! We are on a GF diet and I have posted a few recipes on the forum in the past plus got a few new ones from here too. If it helps you to have a forum friend, I am happy to oblige!

Hi proud mum, thanks for

Submitted by Lestyrox on Tue, 07/07/2009 - 12:00pm.
Hi proud mum, thanks for replying! I'm so glad i've found someone to talk to, being a stay at home mum its hard finding new friends and the added stress of caring for my little man means going out and meeting people is virtually impossible. The library at Coffs Coast Autism sounds great, we're yet to take a family trip over to Coffs but hopefully in the coming months i can persuade hubby to take a day off and we can have a little road trip and check it out. My little boy has been on the GFCF diet for about a week now, i have seen some subtle improvements with awareness and interaction however the last few days he seems to be cranky and short tempered, similar to how he was before the diet. I am thinking he could possibly be having withdrawals? Do you mind me asking, how long was your little one(s) on the diet before you noticed big (if any) improvements? I've read that i should try the diet for 6 months to see improvements. I'm not expecting miracles but it would be lovely if my son's temper improved. Thanks for the suggestion about the Early Intervention Services, i will definitely look into that. Does my son need to be formally diagnosed with ASD before we can use their services or can i get onto that now? Sorry for all the questions, this is all new and a bit daunting. I really appreciate having you to talk to. Hope you're having a good day :) Celeste

EI eligibility & GF diet

Submitted by Proud-Mum on Sun, 12/07/2009 - 9:35pm.
Hi, again Celeste, Sorry for the delay in reply. I don't tend to make it online as often as I'd like but usually at least once every few days so keep on messaging. It's great to be able to share. Regarding the Early Intervention eligibility, I would definitely try them now. I don't know if all the services work the same way but I know the Coffs Harbour one doesn't require formal diagnosis - just a need (although I think diagnosis always makes service providers more likely to sit up and take notice if they have really full books). On the topic of GFCF, we aren't completely casein free, although our little bloke doesn't drink milk or eat cheese etc anyway, but there would be some casein sneaking through in milk solids in other foods. We are much more strict with gluten free (although I know he steals bread from other kids at school sometimes!) and we really saw a difference within the first 2 to 3 weeks. The really telling thing for us wasn't so much in a change in behaviour (from a "good boy" perspective, although it did improve a bit) but in his alertness. It is a bit hard to explain but it was as though a cloud lifted off his head. He would really never look at you or at anything previously. His eyes just seemed to skim things without ever focussing on them, making it impossible to teach him anything or to successfully use visual aids. That changed a lot after taking gluten out of his diet. I have heard that it takes a long time for gluten to break down and to be totally secreted from the body so we were surprised to see a short term improvement. We have been (primarily) GF for 3 years now. I wonder sometimes if I should re-introduce it to see if there is a change but don't want to risk it so we just keep plugging away with it. Hope that helps. Cheers, Proud Mum

Hi again, how has your week

Submitted by Lestyrox on Thu, 16/07/2009 - 2:58pm.
Hi again, how has your week been? My little guy has been having massive tantrums the last 2 or so weeks, its very tiring. We're still following the GFCF diet and like you i have noticed very subtle changes in his awareness. You described it well when you said it was like a cloud lifted from your boy's head, thats wonderful that its had such a positive affect on your son. I feel there is a 'fog' over my son's head and i think the diet has helped to clear it a bit although it is definitely still there. To be honest i am a little dissapointed that i haven't seen bigger improvements. I didn't expect to move mountains but i was really hoping his temper would improve as i thought maybe his bad temper was a result of the casien and gluten in his diet but no luck yet. I will stick with it though, i think it is helping him, he's eating more and putting on more weight so that has to be a good thing. I am looking forward to his appointment with the pediatrician in August, for so long i haven't wanted to label my son but now i am actually looking forward to a diagnosis so i can get some answers and maybe try to understand my little guy more. Do you have an email address i can email you on? It really is great to talk to you, its nice to know we're not the only family going through this. I'm finding it hard to find support groups but Coffs Coast Autism looks great, i had a look at some of the pics from different events and it looks like they provide a lot of support for families affected by autism. I'd love to get involved in group activities, although it is a little hard with the kids so young. Great to chat, Cheers Celeste

Catch up

Submitted by Proud-Mum on Wed, 12/08/2009 - 4:05pm.

Hi, Celeste,

Sorry I've been off air a bit the last few weeks. Things have actually been reasonable calm but I am REALLY busy with work so I find myself being a bit of a couch potato when I finally get our little bloke off to bed.

Have you had the paediatrician appointment yet? Keen to hear how you've gone.

I have heard a number of people say it can take months to get gluten out of your system but casein clears more quickly. Don't know how true that is or how you know when it's cleared though!

Would love it if you could make it to some of the CCA events. The girls said there will be another Mum's Day on November 28th & a Big Play date on November 29th. They are both great if you can get to them. I guess they'll post something about those soon.

I hope you don't mind using the forum for now. My email inbox tends to get completely clogged with junk mail plus I have taken part in a few different forums and noticed that people swapping email addresses takes away from the forum discussion. I like reading posts that other people have made & find it really useful. Hope that's OK.

Hope you're doing OK?

new as well

Submitted by alisonm on Wed, 12/08/2009 - 8:34pm.

hello, I am also new to the forum but have been meaning to attend meetings for nearly a year however something always seems to come up every second tuesday of the month!!!

It is very interesting to hear peoples journey to diagnosis and thought I'd might share mine as I have used facilites in coffs and grafton!

My son is 5 and currently in Kindy.

Our road to diagnosis sounds like alot of peoples.

My son popped out different the day he was born.

Only at 3 months he refused to go into our local hall in Qld for vaccination as he remembered it a month prior!

He also did things like be in a room of people and as soon as everyone was talking and looking at him he would cry...and cry...and cry...nothing....nothing made him stop, rocking, dummy, bottle....in the end we drove hom (15 mins) and he still cried. It wasn't until he had a bath, bottle and bed he settled!

anyway my path is different..my son could talk and look at us affectionately.

I didn't know anything about aspergers or that there was a spectrum.

I thought of rain man...I know that sounds terrible but that is all I knew.

Anyway after moving house, having a baby and starting pre school his behaviour got worse.

After a few months in pre school and his behaviour was getting worse we went to the local GP. He referred us to a child psychologist, no real diagnosis....after a few months of visits with mostly me talking we stopped as money was tight.

Pre school was still having problems so back to GP for a Pediatritian appt.

we visited him twice (Dr Budd) only for him to say my son was unique!!!

Anyway Pre School still having difficulties so then went to MCCombie and Assoc and paid $400 for diagnosis.

I also had an appt with a Grafton Pediatrician (DR Mary) at Grafton Hospital to confirm diagnosis.

So after all those visits my son was 4.

So we then attended SGPS Early Intervention two days a week to prepare him for big school.

After Grafton Ped - she referred us to OT and Speech at Grafton Hospital (all this has been free)

we have had Ot and speech visits and also participated in some group sessions with children with the same issues.

we still see Grafton Ped every 4 months and also we see Dr Kramer in Woolgoolga who monitors my sons progression through school.

We also have tried diet, however for us reducing the gluten, wheat and diary is the way for us. and this has helped especially using 94% wheat free  bread.

Also switching to soy milk.

its hard for us as our son looks normal, talks alot!!!  can look people in the eye however still sensitive to certain noises , new places etc and meltdowns have happened in public!!!

my next step is school and how to cope with his inattentiveness!

OT exercises in the classroom have helped but 2 different pyschologist have suggested medication for his co morbid - adhd.

anyway any comments on our situation would be helpful and hopefully I can attend a meeting soon.

I know there is a grafton support group for ASD parents held on a wed at noon but can get back to anyone if more info needed.

anyway thanks for reading!!!!

 

Hi Alison nice to meet you

Submitted by Lestyrox on Sat, 22/08/2009 - 1:15pm.

Hi Alison nice to meet you :) sounds like we have a lot in common, do you live in the Grafton area? Could you give me some more info on the Grafton ASD support group? I'm trying to branch out and find support and new friends so any extra contacts are much appreciated :)

Sounds like you've had a long road leading up to your son's diagnosis. So he's off to school next year? Wow i bet thats exciting and a little scary for both of you. It sounds as though you've been very vigilant in getting him the help he needs so that'll work in his favour when he starts school. You sound like a great mummy :) Wereabouts are you sending him? The reason i ask is because after a few looong talks my husband and are have decided to move to Coffs (we're currently in Garfton) in the coming year as we think there'll be more opportunities for our son there. I know Coffs isn't huge but i figure there is more support there for all of us. Plus i've been begging my hubby to make a career change for years, so we're seeing the move as a chance for him to take a less stressful job and perhaps start some study as well... of course he has to find a job first so wish us luck!

Proud Mum, its nice to chat again, don't worry i completely understand how busy life can get. How's work? Are you enjoying it? I don't mind using the forum to email, i agree, its nice to log on and catch up with everyone :) I would love to come to some of the events in Coffs! I will keep an eye on the upcoming events, its been so long since i've socialised i wont know what to do with myself lol.

I have been pretty busy also, i've started my Primary Teaching studies back up this semester and one of my units is maths YUCK! it sure is working out the old grey matter :) But i am finding the challenge rewarding, its nice to do something for me and work towards my future career.

We have Ethan's appointment Next week. We see the speech pathologist at the hospital here in Grafton on Wednesday and then we see Dr. Budd in Coffs on Thursday. Fingers crossed for a diagnosis but i'm not holding my breath. Sounds like it can take quite a while to get a formal diagnosis. I am hoping that, like you Alison, Dr. Budd doesn't send us away with a diagnosis of 'Unique' (although of course my little man is!). Anyway i think i'll just go to the appointments with an open mind, thats all i can do right?

I've started Ethan on omega 3 supplements as well as multivatamins and calcium to go with the GFCF diet, it was all a little daunting at first but we've sort of gotten the hang of it now. Although one of the staff at Ethan's day care gave him an arrowroot biscuit yesterday and he didn't go to sleep until 10:30pm! And today he's been really short tempered and cranky. Grrrr. I'll be making sure they write in Ethan's notes at day care that he's on the diet.

Anywho i better go and do some more study. It is really lovely to chat with you ladies, sometimes being a stay at home mum can be so isolating but its nice to know i have you girls to chat with :) Thanks!

I will report back in after Ethan's appointments and let you all know how we go!

Cheers,

Celeste  

 

Well we had Ethan's speech

Submitted by Lestyrox on Fri, 28/08/2009 - 12:09pm.

Well we had Ethan's speech pathologist appointment on Wednesday and he saw Dr. Budd in coffs yesterday. Firstly the speech pathologist couldn't do a formal assessement because Ethan just wouldn't cooperate and had 0 attention span :( It was sad really, the early intervention lady (who sat in on the appointment) kept asking him to play games with her or to point out pictures etc and Ethan was just so scatter brained that he was more interested in throwing the chair around or lining up the toy blocks. I really wanted to help Ethan, usually at home he's not as scattered but he does have a very short attention span and is so hyperactive so i knew it was proabably a good thing that the early intervention lady saw him like that.

So we saw Dr. Bud yesterday....hmmmm not sure where to start. Firstly we were waiting an hour to get in and in that time both boys went ferral and i could see that Ethan was at his limit. So anyway we finally got in and i told Dr. Budd about all Ethan's quirks and bevaiours. I had even put together a folder full of stuff on Ethan, his milestones, strengths, weaknesses, day carer comments etc etc which i think helped Dr. Budd get a good idea of what been going on. Anyway i took along some rice cakes for Ethan because i knew he'd get hungry but that was a baaad move. He was so overstimulated that he started throwing them around the room and of course they broke...oh dear did Ethan go nuts! He is very pedantic about his rice cakes and they MUST be completely circular, so when he broke them he went crazy and started heading for a meltdown. My poor hubby had to take both screaming boys outside while i finished talking with Dr. Budd, thankfully hubby was able to distracted Ethan by getting him to count the cars that drove past lol.

So Dr. Budd gave us an imformal diagnosis of ASD. I found the whole appointment quite confusing actually. He was quite convinced that the tap water is bad for Ethan (and other kids on the spectrum) and went on to tell us about a filtering device that is needed to ensure the water Ethan drinks is 100% pure..problem is it costs $900!! I tend to agree to some degree, i am a bit suss about what is put into the water but the thought of spending $900 on a water filter scares the hell out of me. Of course i'll do anything for my little guy...but $900???

Anyway after abserving Ethan he said that he had some very autistic traits and is on the spectrum but isn't 'autistic as such'...not sure what that means! He said the good news is that he thinks Ethan is very high functioning so there is a silver lining. He has requested that Ethan get a blood test to rule out any other dissorders like Fragile x etc...my gosh how on earth am i going to get him to sit still to get a blood test??? He's going to absolutely flip out, i think i'll have to hold my poor little boy down which is going to break my heart but i guess it needs to be done. Apparently the results can take a month to come back so we'll be playing the waiting game again. I still don't know if Dr. Budd will give him a formal diagnosis once the bloods come back or not, thats what i'm confused about. It seemed to me that he wasn't keen on a formal diagnosis but i'm assuming it would be better for Ethan to get a formal diagnosis so i can get him the help he needs. I'm going to call the early intervention lady today and get the ball rolling there.

Can anyone offer any advice? I'm not sure whether to get another opinion with another Ped. Or maybe i should just wait for the blood test results and then see if Dr. Budd will make a formal diagnosis?

I don't want to label Ethan but at the same time i really would like to have a better idea of what we're dealing with.

Hope everyone is well :)

Celeste

 

reply

Submitted by alisonm on Sun, 30/08/2009 - 4:40pm.

oh Celeste, your appointment sounded like mine.

I came out of his office confused and went back again confused again! He told us the same thing about water, plastic, milk , microwaves etc.

We have our son on a reduced Gluten/diary free diet which suits us and sits well with him.

The fish oil works great and he also takes Zinc - which I throughly recommend.

Anyway to get a diagnosis you can see another pedatrician and also see a psychologist.

We see Dr Mary at Grafton Hospital however she does have a waiting list. We went to McCombie and associates (coffs)and completed tests etc. however my son (3 at the time) found it very difficult to sit in a small room and do IQ tests and puzzles.

I also have been to minds and hearts in Brisbane - thats another option.

There is another pedatirican Dr Naidoo in Coffs.

My son also found it difficult to participate with the speech and ot at first however after a few visits and some social stories it helped.

The grafton support group is the first wednesday of the month so this week.

I have not been yet and awaitng an email from a friend on where and what time?

 

Blood test:- I got a blood test done for my son to see about his iron levels as with his limited diet I was concerned about what he was eating. I went to see a dietician at Coffs Hospital and had to note down for two weeks what he was eating. Anyway so I had to get this blood test done. To this day he still remembers it.

we had 2 men and 1 lady and myself holding him down. It was very traumatic.

I am actually at Glenreagh and my son is already in Kindergarten at the local primary school. We are extremley lucky that the school has around 89 children in the whole school!!!!!

He also went to South Grafton Primary School Early Intervention program for two days a week for a year to prepare him for school. The teachers here are fantastic and know their stuff.

To be entitled to the Govt funding and assistance you need a diagnosis. I wasted sooo much of my time denying at first and then waiting for an answer.

Have you been to Grafton Early Intervention. They are at the Jack and Jill Pre School?

They also could assist you with advice.

Will get back to you about Grafton Support group.

Alison

 

 

grafton support group

Submitted by alisonm on Sun, 30/08/2009 - 4:56pm.

it's the first wednesday of the month at 12pm till 2.00 in the community centre, so go off the bridge turn right at the roundabout, turn left at next roundabout and turn right at the next roundabout (before you get to the park), go under the viaduct and it's on the left. Duke st I think it is.

Thanks Alison! I will

Submitted by Lestyrox on Tue, 01/09/2009 - 11:49am.

Thanks Alison! I will definitely try to make it.. it all depends on whether Tobias, my youngest is having a nap on the day... all hell breaks loose if i wake him from his nap! Are you going? Is it ok to take the kiddies? I'd really like to go, it'd be so good to chat to other people in the same position.

Ethan is getting his blood tested as i write this, his daddy has taken him.. i feel sooo terrible putting him through this but i know its for the best. Poor little guy :(

I'm feeling really lost as to where i turn now in getting a diagnosis for Ethan... my brother in law who's a doctor suggested ASPECT as they do formal assessments for $850 and we could get the results in as little as a month but apparently there's a long waiting list. I don't know whether i should just wait for the blood results (which will take a month) and then see what DR. Budd says or if i should make an appointmnet with Dr. Mary or Dr. Naidoo now (since we'll probably have to wait anyway) and get a second opinion. Do i need to get another referral from Ethan's GP to get into see Dr. Mary or Dr. Naidoo? I'm a bit confused as to how it all works.  

Alison, how many appointments did you have with Dr. Mary before she was able to give your son a formal diagnosis? At this point i really do want a formal diagnosis by i'm not sure which way to go about it.

I've left a message with the early intervention office here in Grafton so i should hear back from them soon.   

I have a uni assignment due next week, its for a maths unit and its been doing my head in a bit but thankfully i'm nearly finished. Its nice to have something to take my mind off everything.

Hope everyone is having a good week :)

Cheers,

Celeste

grafton support group

Submitted by alisonm on Thu, 03/09/2009 - 9:18pm.

hi celeste

I went to the support group and found out some contact information.

No children were there but I don't think they would mind. I was lucky to have mum babysit my two year old.

The lady that runs the service is called kerry and I only have her email however I can't put it on this website.

maybe if I leave my number at the Coffs Coast Autism office and you can call me and I can give you the info.

 

 

alison

Thanks Alison i really

Submitted by Lestyrox on Sat, 12/09/2009 - 1:04pm.

Thanks Alison i really appreciate the info on the support group but i think i might wait until we get to Coffs and we're all settled and then hopefully i can get involved in something there but thank you anyway :) My hubby has an interview for a job in Coffs on Tuesday so fingers crossed he gets it! Even if he doesn't we have made up our minds that we'll be living in Coffs by Christmas so if this isn't the job for him i know another one will come along.

On that note can anyone recommend a good day care? Here in Grafton Ethan goes 1/2 day a week and i'm hoping to get him in 2 1/2 days a week. His day care here has started enrollmnet for next year already so i am eager to find a good day care in Coffs so i can get him enrolled for next year. I know that sounds silly since we haven't moved yet but i don't want to miss out on getting him a spot somehere, i really need him in care for a few hours a week so i can get my study done. Its hard because i'm not sure where we'll be living but i figure that if i find a good, central day care we can work out living arrangements to suit so if anyone can point me in the right direction that would be great!

I'm still trying to get my head around everything. I'm going to call ASPECT this week coming and see if the report Dr. Budd gave is enough to recieve the funding for kids with ASD from birth to 6 years. If the report is too vague then i'll have to think about taking him elsewhere to get a fromal diagnosis...not sure where yet but i'll cross that bridge if i come to it.

By the way, has anyone noticed this forum is getting skinnier with every new post? Maybe i should start a new thread?

I hope everyone is having a great weekend and enjoying this beautiful weather :)

Cheers

Celeste