You're too nice Christy. That wouldn't have been my response ;)
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You're too nice Christy. That wouldn't have been my response ;)
well i wouldnt have appoligised i never appoligise i know we all have it hard but gosh its not like when openly whinge about our children
big hugs hun
Well all I know we live very busy & strained lives... not much happening here other than a lovely blockage of paperwork!!! I can't do it. I can't look at it, I can't do it.......
AAAARRRGGGGHHHHH I think it will be the job of DH.
On another note, one of the founders of Matilda's school has been praying for us, and gave us a book about healing that has a whole section on Autism. I don't know what to think or do. This is my own spiritual battle to me, if I pray for healing, am I not accepting her the way God made her?? I just want to love Matilda, I don't want to hurt her.
Christy..I just had tears streaming down my face with you letter.....perfect hon!!!
Sorry Ive been awol...had to much to deal with here with both boys.
Wilhelm is starting to ping of the wall's as we are mentioning the big holiday more and more. Wehave given him a little independance with Nikolaus...dropping both of them off near the school so they can walk accross the crossing together.
PSG was intersting last week. We have stopped school night DS playing and ocmputer time. It was becoming to much and the aggression was surfacing at school and here at home :( so I nipped it in the bud and its working.....he's more communiative with us. He tend to wonder of at 7ish to down load for 1/2 an hour but its not for the 2 -3 hours like it was. His teacher said that she has noticed a big difference in him at school :dance: BUT when I told the pead (yes he was at our school meeting) what I have changed at home...the career tried to tell me SHE thinks he needs that and I shouldnt take it away!! WTF???? I know she has a close bond with him but im doing this for his good...I AM HIS FEAKING MOTHER!!!!!! There was been no more tlak about suicide and knifes since I have done this....and no more talking about killing other people. Why cant people see im trying my friggen best instead of trying to tell me what to do!!!!
I had a giggle at him last week...I made something for someone special ;) and he was asking me and happing me make it. He asked me who it was for and I told him and said she was a special girl....and he said.....ready...
Is she autistic like me to mummy...cause that makes us both special
Break through...I cried yes...but my boy knows that he has autism.
Enough of my crapola...I have to go get supplies...we're out of nutrigrain and heaven forbid there is none tomorrow for WIlhelms breakfast :rolleye:
oh hun! I can't wait to get to the post office this arvo & pick it up!!!! I can't wait!
when does the hell stop ive been kicked biten pushed and growled at alll over trying to get this bloody antbotic into him and to top it all off hes had a massive illergic reaction and is covered in a rash so yeh bath time is a struggle now let alone the drinkinga nd eating since we got home he refuses to eat anything chunky or solid has to be sofy and sweet
hes driving me bonkers
we move house next week gee this should be fun
wow maz thats a big break through
:hug: murraysmum, its exhausting... :hug:
MAZ YOU ROCK MY WORLD!!!!
I haven't been back to post our latest results from J - I guess I both needed time to process it, and also I felt like I didn't belong anymore given that they have ruled out Aspergers.
What we have found out though is that he definitely has sensory issues, and also, as a complete surprise to us, he has low muscle tone and hyper-extensibility (double jointedness). Both of these things will be contributing to his poor concentration and inability to sit still. I have been giving this a lot of thought, and I need to ask more questions about this. I have been reading about it and I just feel that the low tone isn't isolated - it must be related to something else. Also, the paed said he was borderline ADHD and was trying to prepare us for the fact that she might be diagnosing ADHD when she reviews him just after he starts school next year. This was a big shock also and I think we are still coming to terms with this.
On the paed's advice, we have been interviewing school principals and have found 2 schools that seem fantastic and willing to work with us. Now we have to pick which of the 2 to go for. It has been a bit difficult to get the words "special needs" out at times, but I think I'm starting to get more used to it.
Anyway, that's where we are.
I'm sorry you guys have been having a hard time :hug:
Hi all, sorry i haven't posted in a while, i've been flat out studying, i have a maths assignmnet due in a week and its giving me a headache :wall:
Anyway we had Ethan's speech pathologist appointment on Wednesday and he saw the Ped. 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 the Ped. 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 the Dr. 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 the Dr. 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 the Dr.thankfully hubby was able to distracted Ethan by getting him to count the cars that drove past lol.
So the Dr. 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 the Dr. 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 the Dr. 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
Hi,I am really sorry to barge in here, but I keep an eye on this thread.
:clap: on the job you all do with your little ones.
I was listening to ABC radio the other day and apparently there was some big autism conference in Sydney last week, anyway, they have been doing clinical trials on autistic adults with oxytocin, (it is a hormone, I think)
The results apparently have been quite remarkable for helping with repetetive behaviors and social cognitism (being able to read faces/emotions)
I dont know how to post links, but if you wanted to look, I just googled autism+oxytocin.
I know you guys prob hear of "miracle"fixes all the time so i feel a bit embarrased bringing it up.
Shell
oh Christy i know how you feel. Some nights i pray to God that Ethan will get better, and then i feel guilty because this is how he made Ethan and there are things about Ethan's personality that i love that are part of ASD..like i love that he sees all the little things in life that people miss, i love that he can be so mesmerised by the flowers in the front yard, or the moon or the wind in the trees ;). Plus i feel guilty wishing his autism away, so many people have it MUCH worse and i know we're truly blessed. I thank God everyday that Ethan is affectionate and so full of giggles and cuddles as i know this isn't the case for many kids on the spectrum.:
On another note, one of the founders of Matilda's school has been praying for us, and gave us a book about healing that has a whole section on Autism. I don't know what to think or do. This is my own spiritual battle to me, if I pray for healing, am I not accepting her the way God made her?? I just want to love Matilda, I don't want to hurt her.
Big :hug: to you hun xo
LR, I'm glad you have those appointments behind you. They can be so stressful :hug:
Often medical professionals refer to things like Aspergers as being "on the spectrum" but not autism - hence the term ASD. So that's probably what the paed meant. I think in general doctors are reluctant to diagnose before age 4 or 5, so that's most likely why he didn't talk about that. The thing is that many of the behaviours related to these things change with age. It's the same with ADHD - they won't formally diagnose DS until he has started school.
I hope that your early intervention lady is able to help you out in the meantime. Are you seeing on OT at all?
MLM - I have read about that in various places too - it's quite interesting. In fact oxytocin is the same hormone that triggers let-down when breastfeeding, and also orgasm (not when breastfeeding ;) )!
Thanks MantaRay, i guess i'm jumping the gun a bit. From reading through all the posts on here it seems like a formal diagnosis can take aaages and involve lots of different appointments and specialists..its all a bit scary to be honest, i feel like i have a mountain of information to digest :o
I guess i felt a little deflated after the appointment, we'd been waiting months to get in and i guess i just expected more of a clear idea of whats going on with Ethan. But of course like you said, ASD can be hard to diagnose and i guess it might be a good thing if we don't get a diagnosis straight away. He seems to make little improvements all the time so maybe by school age we'll get a better idea of whats going on.
Has anyone else had their little one's blood tested? Ethan is booked into get it done on Tuesday....i get teary just thinking about how horrible its going to be. Dh is taking him because he'll have to hold his arm straight and hold him still and i don't have the strength to do it, plus i don't think i'd be able to hold it together, i know he's going to scream and be really traumatised :cry: I am keen to see what the results are though, i'm sure everything is normal but i want to be confident that there's nothing else going on in his little body that could be contributing to his behaviour.
I'm yet to hear back from the early intervention lady but it sounds like we're going to get Ethan into that once or twice a week. The dr. didn't mention OT, is that something i have to organise? What exactly happens at OT appointments?
Thanks ;)
we have our last assment on monday yay not im so exhusted
hes done nothing but scream and kick and scream nothing i do is right and he wont eat he wont drink he wont stay inside
im hoping once i get this last one over and done with someone will help my other half seems to think murray is my problem i feel like a single parent atm which isnt a good head space to be in atm
i hope everyone has been having a ok week this week
Sorry girls, I've had too much on my plate and fell away.
MR - our paed said to me that ADHD and ASD are related in some way, and often get misdiagnosed as each other because they can share quirks. He isn't convinced that Matilda doesn't have ADHD as well :dunno:
LR - It is frustrating. I met another parent in a waiting room once who said this was her 5th assessment... and her daughter was crouched on a chair flapping and rocking. She said no one wanted to diagnose ASD and they were at the end of their coping. Its taken us almost 2 years to get anything diagnosed and now they are throwing heaps of diagnosis at us!
Matilda's not sleeping again, and its awful. I'm teary all the time because I have nothing to support me when I can't get any sleep. We are up for hours in the middle of the night & I've been working extra shifts and I have family stuff going on in America.... ARGH.
i know about the sleep issue i met breaking point yesterday i was utterly exhusted told the dp were he could shove himself and his daughter and walked out took muz with me and we went and sat up the chook pen with the chooks when i got back he had taken the hint and cleaned the kitchen for me but grrr i get so angry at him he gets 10 hrs a night im lucky to get 3 hrs muz has decided he likes to get up and scream and scream so i have to go in and offer nappy change drink food anything to cox him back to sleep ive given up how manny times i have gone in there
he has also adopted sitting under our dinning room table anyone else get this
when ever i tell him now he dives under there and wont come out he does it with his bed too and if i touch him he kicks tries to bite and growls at me like a wounded animal
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