Aspergers/Autism/Sensory Integration Chatter #3

Christy love - NEVER be sorry for venting, OK? That's what we're here for and we're just sorry that there's a need to vent in the first place. :hug: I hope things pick up for you all.

What you said about her doing everything she could do remain 'high' resonated with me though - E has had a really nasty flu all week which meant he stayed home from EI. Yesterday he started recovering, and was at that stage of feeling well enough to be bored and cranky, but not well enough to focus on anything constructive. Most of the day was spent with him throwing things around the house (and occasionally hitting myself or his sister with them, randomly though, not deliberately) and generally being horrendous. I'll admit that I lost it at him after getting clocked with his wooden abacus - and had to put him in his room until I calmed down enough to deal with him losing at him. Don't feel proud of myself for losing it but there comes a point, right? I'd been doing so well and staying so patient with him, but a week of no sleep and no breaks really took it out of me.

Anyway, what you said Christy makes a lot of sense, because he was quite determinedly working himself up all day. By end of day he was frightful. Fortunately he slept well and has been good this morning, but was working up again - DP has taken him for a drive to see if he'll go to sleep. But I'm not sure how to handle him when he's so determined to push my (and his own) buttons.

Yesterday I wasn't too fond of Autism myself :(

Christy- How are you going? I hope things have improved since that day. It is just so tough.

I came across agood iphone app. It is called the Time Timer. It is $4.95, and is basically a timer clock, but very visual so that kids can see how much time they have left. we are using it for J, so that he has to participate in activity for a certain length of time, and he can clearly see how much time he has left.

Time timers are awesome, Sue Larkey recommends them for school kids with ASD too.
Is anyone else tired of the constant whirl of OT and speech ? I feel like I am on a roller coaster some days, I need a couple of days off a week just to do all Riley's speech etc- sadly that is not possible :(.

Christy hope your cheesy break is helping!!

I hear you. It seems to be appointment after appointment. Then there is the practising what they are learning in Sp and OT, plus all the other appts...

We also have a time timer clock here that they have now purchased one at childcare that they are using very successfully with J there. $50 though so not cheap

Oooh yeah, I hear ya. I did over 250ks one week. We had 3-4 appointments a week for a long time, basically a full time job with the homeschooling and home therapy.

The social skills group has just finished and now I have an OT that comes to our place and that has eased things a bit........but now I'm running DS to school and back in hour blocks. I'm constantly moving, constantly!

However all this stuff has been working because he is going BRILLIANTLY at school! We started with 30 mins per day, then an hour and as of next week he will go for an entire morning. He is happy to read with the aide and has started doing a little work in the classroom! I'm spinning with happiness. He tears around playing football at recess with all the boys, has made friends and the teacher was telling me all the kids ask where he is and fight to play with him!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

He is so proud of himself. We know there will be a reversal at some stage, but progress is progress.

It's very tiring and it IS a rollercoaster. xoxoxo

Yay Lu

Been a bit absent but there is a whole heap going on at the moment and I am just keeping my head above water really.

Chilly has been suspended again. He goes back today but its not a great start. Last week he was in a fight nearly every day and then on monday he refused to follow a teachers directions and swore at him so they suspended him..... *headdesk* Poor DH is dealing with this drama.

We had an appt at the school for Princess on tuesday. They have moved her into a support unit class, which is great and I know its good for her, and I know its his job to explain it all to us, but I could have done without being told my DD was being put in a class for children with mild intellectual disabilities. I know one day soon we are going to have to face the facts on *something*.. just not sure what it is. And not really all that sure that either of us are ready to hear it.

Been trying to work out where it all went wrong. Where I stuffed up so many times. How I kept getting it wrong and then so very right for bunny. I realised today that Bunny was the only pregnancy where the HG was diagnosed and managed. Could this be because of the HG? I had it in the most extreme way when pg with princess. Lost a good 30-40 kgs. Is that possible? I can't seem to find ANY information on the outcomes for children when the mum had HG. Can find plenty of all the crap that can go wrong for me... figures.

If anyone knows, please let me know. =(

:hug: BR. You didn't stuff anything up. These things are sometimes out of our control.

And boy don't I know that one today. Freakin over it. DP's on late shifts all week, and won't get home until 9:30 each night. Neither kid slept all weekend, and this morning's meltdown (one of many) resulted in Euan throwing his wooden chair which landed on my big toe - if it's not broken it bloody well feels like it. I'm just getting really over it. He's been doing really really well (he's been doing wees on the toilet for the first time ever, he's been singing songs the whole way through - big, big stuff for him), but one little thing goes out of alignment for him and the switch is sudden. We try to deal with it calmly and consistently, but it's bloody hard when DP and I are actually physically getting hurt. Kinda embarrassing really, getting beaten up by a three year old. And he doesn't realise, or have the capacity to realise that's what's happening. Sure, when he hurt my foot today he realised something was wrong, but he can't make the connection, and to be honest, when he's in meltdown mode it's so internal, you could drop a bomb next to him and he wouldn't notice. I got a comment that 'he's got to learn that he can't throw' - well duh! Really? No, we just pat him on the head and tell him he's a good boy and give him a freaking ice-cream whenever he starts flinging objects around the room. But there's a big, big world of difference between teaching him (or trying to teach him) that something isn't appropriate, we can model the right behaviour and do all of the right things, but short of cutting his bloody arms off so that he can't throw things, we can't actually make him understand this, let alone give him the ability to control his emotions and his response to them. That's going to take time - a lot of time. He's not even three for crying out loud.

Anyway, thanks for letting me vent this - sure doesn't change anything, doesn't make my toe hurt any less, won't make this week any less suck-full, but it makes me feel a little bit better. Sort of.

Hugs Suse xx

Just curious if any of you can pick up when a meltdown is coming. It's strange since Sat I have had a feeling something was brewing .Yesterday morning I said to DH i can sense a meltdown coming..yep sure enough we had a beauty n the middle of the swimming pool of all places. He has overcome his fear of water , he still doesn't like showers and baths but will manage to do it without to much complaints and kicking and screaming. However last night he had his first lesson in his new group. It was at a different time slot and with a new teacher and in the deep end of the pool.
As I was walking him down he started with the 'Im going to die" talk and I spoke to him about it , he happily went into the pool and well that was that. I turned around not even 5 minutes later and he was screaming, refusing to do anything and just having a major meltdown.. I felt like jumping in with him.
Luckily enough I am a swim teacher there so the staff know me and Hamish and were great with him. He was brought to me arms and legs flying everywhere. We managed to calm him down enough for him to catch his breath and he started up again. Dh came and picked him up and took him home as we had DD in the pool still.
He fell asleep in the car.

This morning he was set off again by Lachie making noises and just basically being a noisy toddler.
Amazingly though this afternoon he is calm and the my feeling of something not quite right has gone..

Hugs Suse. My dad used to helpfully tell me that if I hit Riley more he'd be better behaved! Luckily he is now more educated about sensory issues and much more understanding.
Tania- I can tell when a meltdown is brewing usually and the OT has been great in helping us with strategies to try and divert them, they sometimes work! Sometimes I just leave places crying LOL.

Has anyone had problems with their child wetting their pants ? Riley is TT but if he is busy or doing something he likes he just wets himself and doesn't seem to care until i mention it and then he says "Don't scream". He is still in night nappies and I worry he will be until he's 17!

It sound like a few people are having a tough time. I hope things improve soon for everyone. ATM J is stressing that I will make him go on the Santa train at myer. He went on it about five times last year! He has been stressing
For days!

Tania - we're not too good with identifying meltdowns yet - some we can see coming and can divert (usually if he's had a bad night's sleep we can expect lots of frayed nerves), but some things are so random. Obviously not to him LOL. This morning's toe smashing episode was because he was washing his hands after going to the toilet, got distracted from his routine and wanted to turn the light on and off. With wet hands. Then totally lost it when I tried to guide him back to washing his hands. Part of it was what I call routine divergence stress and part of it was because he was fixating on something which was then denied. In hindsight it's obvious, but who could have predicted that he'd a) divert from routine or b) find something new to fixate from at exactly that point in time, when he'd done exactly the same routine without incidence several times that morning. Other times it's just random frustration which is even harder to predict, he'll be playing happily with a toy or puzzle, it won't behave in the way he wants it to and bam, things are getting flung willy nilly. Usually too quickly to even attempt diversion. The only predictable factor in this is his general mood, often relating to sleep. If he's otherwise having a good day and has slept well, he can cope with more variance or frustration before he loses it, and is thus easier to distract and divert.

Thanks for the hugs guys - really needed it today. I know it will get better, and we've had some great improvement, but it's still really rough at the moment. Kinda feel like everything revolves around Euan and we're walking on eggshells waiting for the next bomb to drop. Mixing metaphors a bit there. Mrsmac - had to giggle at your dad's words of wisdom, it makes mum's comment much more understanding by comparison. What frustrates me is that she's so fantastic with Euan (they have an amazing bond), and would walk on hot coals for him, she's so supportive of how we raise him and what we do, and helps out so unconditionally, and is very keen to learn more about autism, but on the flip side, she'll say or do things that suggest that she really doesn't get it. At all. So I feel really churlish for getting occasionally frustrated, because she is so damn supportive, but... There's always a 'but'.

Sorry I've missed out a few days here! I've been sick which doesn't help.

Remember T? The 12 year old who has SI only just recently diagnosed? Well.... she's staying here atm because her mum just can't continue. She needed a break, so I said T could stay with us. :o

:hug: Suse, its so hard, but as you go you will pick up those triggers and then you have to decide whether or not its worth it.

mrsmac.... M is just out of night nappies. Its been 4 weeks now and she's 6. WOO HOO!!!! So there is hope. JJ is in pull ups overnight :D.

Us... well we have to go to the USA in a few weeks, so we've been doing social stories about the plane, talking about seeing Grandma in hospital, talking about going to Disneyland. The last few days we've been looking at images and videos of Disneyland so the kids can grasp the magnitude of it before getting there. I just found out today that Disneyland has a special pass for kids on the spectrum or with sensory integration. It basically means they don't have to wait in lines. They may have to wait, but they can have their place marked and go away and come back when they are going to get on the ride. Its awesome.... I'm so relieved.

Christy - I have used those passes before at Disneyland. They are great. You just get them at the information centre. make sure that you bring some sort of proof of her disability, as she doesn't have a physical disability it is not so obvious.

we have been invited to the variety Club Christmas bash. Is anyone else in Melb going?

also has anyone else got a companion card? I have extra copies of the paperwork here if anyone needs it.

I should add - Not everyone here will qualify for one. J does not qualify, but I use them at work

Whats a companion card? Tell me more :D

I have some of those hospital bracelet type things for our trip to put on the girls in case of wandering. I think I will go and have the GP and her OT write me a letter to carry in my wallet for airport security etc, jic she has a meltdown and we need to do something about it.

I found the best thing for Disney etc, was to put a sticker on the kids back with a telephone number. It doesn't say their name, just a number to contact you on. I also noticed people had written a mobile number on their kids arms in permanent marker. Again a good way to help if a child gets lost.

A companion card is for anyone who has a permanent, life long disability. It is for people that will always need assistance out in the community. It is not so easy to get for young children. It basically means that if you access places that incurs a cost (like public transport, zoo's movies etc) the carer who is assisting the person with a disability can get in for free.

it is companioncard dot org dot au (I think!!)

Hi everyone... some of you may remember me :)

My DS Aidyn is 6, and finishing up grade 1 this year. He was diagnosed with high functioning autism when he was 4.
I've been off the forums for so long, but I'm on uni holidays now, and realising how lonely and isolated I feel... would love to be able to connect again with people that understand what its like...
At the moment the main problematic issue I'm having with Aidyn are the interactions between him and his sister (she is nearly 3). He just has no patience for her, and when she gets in his way its constant screaming... and I mean constant and persistant, yelling, wailing, screeching at the top of his lungs. This in turn can escalate in physical fighting. He just cannot handle her - even if she comes remotely near to what he is playing with... and in turn I am tearing my hair out because I can't leave them alone for 2 minutes without all hell breaking loose. I'm finding myself getting more and more frustrated, and less patient with both of them...
I actually have booked an appointment at a new Triple P centre which has opened up just down the road, with a psychologist who specialises in ASD. Both me and XP are going to go together, because we are both having the same issue, and recognise that we need help...
Otherwise Aidyn is actually going really well... He goes to a primary school which has a SEU that specialises in ASD, so he recieves so much extra support at school, they are just SO well set up for kids like him. Throughout the year he has actually progressed to not needing so much specialised time in the SEU and is spending the majority of his time now in the classroom (there are a couple of ASD boys in his class, and always extra support teachers). He has a best friend (another gorgeous little boy with Aspergers), and can play happily with other kids too. He holds himself together really, really well at school, but it when he gets home (actually the minute we leave the school gate) that he just lets go and his anxieties and frustrations will get the better of him.

Anyway, thats enough from me... I'm going to read back a few pages in here to see where everyone else is at...

A quick one for you Ambah - I have had these same issues for a long time now. We have a new OT who is treating another child for EXACTLY the same thing. We are slowly incorporating their relationship into ALL the other stuff we do with DS.

It's huge, I can't leave the room either....now DD is 4 she likes to trigger his meltdowns as some sort of revenge errrrrrk!

Oh wow Lulu, I can understand that... I'd have to say in our case too that DD is beginning to purposely push his buttons (although i need to accept that is normal sibling behavior too), but she's a very full on child...so it's not just DS's issue at all, it's defintely the relationship as a whole.

What sorts of things does your OT focus on WRT that? I guess thats a pretty complex question to answer though lol. We are not seeing an OT atm, as I'm pretty happy with the OT stuff they are doing with him at school. But I'm really crossing fingers this psychologist will be able to give us some good advice & strategies...

well we have only just started. I realise this is DS's one main trigger. DD is very full on too - she was a zen baby but I think having a role model like big bro meltdown king has contributed to a lot of that. I feel sad for her sometimes.

We see a psych for the behavioural issues - getting him over the anxiety about being perfect and this week the four of us played games together. Yep that's all! Starting off very slow and with the psych there to remind him of how to cope yadda yadda. Of course she was on her best behaviour this week. Let see what happens next!

The OT is right now foucssing on what parts of the day he feels stressed (she uses the CAT kit) and of course they are all when his sister is around. We will build from there. It's a very slow process and I also have to remind myself it's normal sibling behaviour...it's just sucky that it results in WW832 every day . *sigh

Hi guys!

I dont usually post in here anymore because we're still up in the air with Ripley and his issues so I feel like a bit of a fraud but I do read to keep track of how everyone is doing and I saw you in here Lilima and just wanted to give you big :hug:.

Im sorry we didnt make it to the meet at your place Christy, ugh the last few weeks have been complete and utter misery so yeah, we would love to try again though some other time when we are all free :)

As for us well, yeah. He's been doing pretty well at his speech sessions, he really likes his SP and usually gets very upset when he has to leave and tells me he misses 'Alan'. His behaviour is still so-so; some days we have a good run and others not so much. He is listening to instructions a bit more now so that helped a bit (his SP gave us a magnetized star chart which started off the revolution but sadly didnt make it long term, he just gets bored with rewards and goes back to being horrible). Technically his behaviour should be improving heaps now his speech is (we have 3 word sentences sometimes YAY!) but it really isnt, infact in some area's its much much worse. We applied for a carers allowance because the private speech costs are killing us and his SP had to grade him (Im sure some of you have seen the paperwork), well that was an eye opener. The SP doesnt think its autism even though he does have minor traits. He seems to think he might lean more toward the ADHD path. Paed appt is on Dec 2nd so I guess we'll find out what they think of him then.

Ive decided to refuse his place at preschool for next year for a few reasons. One is that I think he would be too disruptive and he definately doesnt have the capacity to cope with the structure. That and his speech is still not up to par with a 3yo's so it would probably further complicate things. Oh and the whole refusing to potty train thing (apparently deliberately crapping on the floor or weeing on your bed is much 'funner' :shakehead: ) So he'll stay with his LDC centre except move up to the preschool room (ugh Im already stressing about that) and hopefully the year after he'll be where he needs to be to go to preschool.

Im kind of drifting at the moment, no one thinks there is any label for him so they dont really want to know about him (and Im betting the paed will be no different) so I get to just keep trying to not kill him and hope to god he outgrows it all eventually. Its taking a toll on my marriage, my parenting of the other kids; Jett is now spiralling out of control with his behaviour I think in reaction to Rip so now I have to deal with his issues as well. My sleep is worse because now he's doing a song and a dance at naptime and bedtime, wakes up a few times a night and is difficult to get settled again, up at the crack of dawn. He doesnt eat well anymore, cracks it when I tell him cookies are not an appropriate food for meals. Not to mention his bad behaviour; hitting and kicking the other boys, locking Stellan in rooms and not telling me til I suddenly cant find him, destroying things, the crapping and peeing everywhere.............he even pretends to knife people if they annoy him (thankyou Dh and your stupid comp games). The newest torture is locking us out of the house when we go into the garage. Luckily I never go anywhere without my keys on a lanyard around my neck but he usually locks the 'knob' on the door which cannot be unlocked with a key. Thaaaaaaannkfully they are the kind with the little hole in the doorknob so I can slip a bobby pin and and pop the lock. So our house is hidden bobbypin central. No matter how many times he is punished for these things he still.does.them; Ive tried time outs, confiscating toys, yelling, spanking (gave that one up ages ago because all it did was start a brawl), the reward charts.

Now its gone on to imitation. We've had to get the pedestal fans out because we have zero cooling in our sweatbox of a house. In a split second one afternoon Stell stuck his finger in and nearly sliced it off. Blood everywhere, lots of panic, some first aid from me and a cool bandaid and cuddles. So the next day, Rip decides it would be fun to stick his finger in it. Why? Because he wanted a bandaid because Stellan got one, so yeah why not try and slice your finger off $^*@. When he came and showed me I nearly flipped out. He just about sliced half his finger open. His nail is lucky to be on his finger. Dh said oh its normal behaviour. Not to me it isnt. He knew he would get hurt, possibly badly. But he wanted a bandaid and that was that. Same as the road sense; I have to keep hold of him however possible at all times because he just walks out onto the road or carpark then laughs after I nearly have a heart attack and tells me he nearly got wasted by a car. WTF?

I just want to wake up one day and voila suddenly everything gets through to him and he's a normal kid like all the others. No violence, no defecating everywhere, no defiance, no obsessions, no meltdowns.

:

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well we have only just started. I realise this is DS's one main trigger. DD is very full on too - she was a zen baby but I think having a role model like big bro meltdown king has contributed to a lot of that. I feel sad for her sometimes.

---

I can really relate, my DD was also a zen baby (love that term!), but these days I am getting a lot of comments from family members (I live with 3 of my sisters) that she is replicating a lot of his behaviours/reactions... I always used to brush this off, but when I really look at it I know theres some truth to it.
I hope the OT sessions continue to go really well for you guys.
I'm really looking forward to mine and XP's first appt next week to start tackling this stuff, in the meantime we've actually had a pretty cruisy week compared to the past few, so I think I'll just enjoy it and try and take note of what is making it work...

*hugs* Freya.. Its so hard living in limbo land isnt it... I hope the paed appt is really helpful to you... DS and I were bounced around a bit without any set diagnosis from various specialists, but the paed we went to was quite clear about giving the diagnosis and the reasons for it.
and extra *hugs* because I can feel what you are going through at the moment is just so damn difficult and frustrating...

Its interesting about the modelling behaviours from siblings- I ahve a little boy in my class who has a severely autistic older brother (virtually non verbal- goes to a special school) and for the 1st few weeks of school (kindergarten) he modelled those behaviours eg, refusing to speak, hiding under a desk, wouldn't do any colouring/cutting etc. I left him alone a bit then gently starting helping him or doing things with him and he is fine now but it was very difficult at first.

DS is going really well at speech, he is starting to self correct and he can say "L" now!!! He has become obsessed with a PS3 game and we have to monitor how much he plays it or he loses the plot when we turn it off :(

WOO HOO for Disneyland!!!!!! We've had an awesome trip. The park was extremely crowded, but when we arrived, I went in and asked fora special pass because M has autism. I didn't have to show the info from the GP etc, but we got a special pass into all the rides. The longest we waited was 10 minutes. M got overstimulated so we went back to our hotel for 3 hours for a break and rest, but we went back and got front row seats for a parade and got a few more rides & it was awesome. M had a fantastic time and was overstimulated but fell asleep an hour after we got back.

Its been full on, plane trip, customs, waiting around, disneyland.... but M has really been awesome. All that preparation has been great! JJ has been a regular 4 yea old :rolleyes: but its all good. Now... onto visiting family & friends.... *bracing myself*

Well I just wasted 30min of my life with a pediatrician who wouldnt even take my concerns seriously because my usually anti-christ like child was ofcourse a bloody angel the whole appointment.

She basically blamed

1. Lack of sleep
2. Being a boy
3. Being a middle child
4. My shoddy parenting skills

She only laid hands on him to check his chest and asked him maybe 4 questions, random stuff like what do you like to do, whats your favourite colour. She noted he had a severe speech problem (well duh effing duh if you had of read the report his speechie faxed over at your demon receptionist's request you WOULD KNOW THE SPECIFIC DETAILS.)

The one upside to the appt is she pseudo diagnosed him with asthma which I have been trying to get them to do for yonks so he has to take a chewable tablet every night at bedtime and hopefully it will stop the never ending cough he has. Plus I have to pump him full of iron and fish oil tablets. Cause ooparently they are the magic cure-all!

She laughed when I mentioned the physical voilence, scoffed that it was MY voice that made him tune out and not listen to the world around him, ignored the fact that I was at my wits end with his non-potty training, told me it was slack sleep that made him hyper yet didnt actually tell me how to fix it. $290 + $66 at the chemist for me to be no closer to sanity and feeling like a complete sack of ****.

*%@$.

Oh man! :comfort: Can you get a second opinion? Are you going to get more speech therapy? I would have thought if she was going to list any reasons at all, it would be speech...that can cause all sorts of issues, like frustration, trouble dealing with emotions, social delays...

She mentioned the speech issues but said because he SEEMED to understand what she was saying that it wouldnt be a massive issue.

Not 10min after we left I spent 3/4 of an hour fighting to get him to sit still and eat his lunch then spent another 1/2 hour trying not to kill him while I got scripts filled and did a few errands. I absolutely cannot take him anywhere, not even for a 5min trip to the local shops without all hell breaking loose and she sits there and tells me its lack of effing sleep!?

Im getting a second opinion referral tomorrow. A few people have recommended Dr Neil Ginsberg or Dr Scott Dunlop so I might just make it an open referral and see whomever fits us in first.

Yep he is still having speech therapy even though its practically making us broke. Im going to speak with his speechie tomorrow about it.

:hug: That seems strange. Our speechie wondered if R seemed to understand me just because of my non verbal cues. But if it's a...*doesn't know right word*...if he knows how to nod and smile and make educated guesses from key words, that's not really comprehension. If that makes sense. Surely a paed would know that!

I hope you can get some sort of plan going. Surely she could have suggested something - even if she did think it was about parenting, or sleep, surely she could have given you resources in those areas?

Christy - I'm so glad you guys had a fantastic time at Disneyland!!!

Freya - this paed sounds awful. I hope you find someone who will take your concerns seriously. :hug: I agree with Nelle that apparent comprehension does not necessarily mean they actually comprehend. And even if he can, not being able to effectively communicate is still likely to be a trigger for behavioural issues. This paed sounds like she has little knowledge about spectrum disorders.

I just cant believe that even if she thought he was perfectly normal apart from apparent really bad behaviour that she wouldnt have atleast referred us on to a child psychologist for some behavioural assessment and maybe a plan to combat his issues. They had one at their rooms, completely bulk billed! Im sitting in her office, desperate for help before I lose my mind or my temper, and she blatantly fobbed me off. Im so freaking mad.

Ive sussed out two other paed's, one can get us in by Jan 13th for the same price ($280, sheesh). Might ring and make an appt tomorrow. They are part of an overall centre and have on call speech paths, OTs, psych's and the like. Might be a sight bit better than the tool today.

Good luck Freya, I feel for you with the last moron you saw!
Neil Ginsberg is R's paed from birth, haven't seen him for ages though :( He is a hottie!! (if you like them a bit older! all the mums at school drool at the mention of his name)

Neil Nicol specialises in ASD, he is at Pennant Hills.

We saw Patrick Concanon in Chatswood, and Kimberly O'Brien in Woollara.... there is a centre called "Quirky Kids" there....

Hi everyone,

Another newbie to the thread with a diagnosis of ASD for my DS, who is almost 5. At the moment it is PDD-NOS, but isn't quite that and isn't quite aspie's either, but the child psychiatrist we see said it doesn't really matter, he is definitely on the spectrum, treatment and funding is the same regardless, and often children diagnosed as young as 4/5 develop and change with time.

As much as I have spent the past 6 months expecting this and following my gut in terms of fighting the system (cracked it with the public system and now doing it private), there is still that part of me that is sad about it. I'm lucky that he is very high functioning, and I want to focus on his great points whilst being realistic about his weak ones, but more sad for the struggles that he and I will have to fight together, and how much better than energy could be spent.

And part of me feels almost like a fraud for claiming to have a special needs kids, because of everyone out there who has it so much harder. His teacher who is a good friend, her daughter contracted meningitis at aged 1 and turned into a vegetable basically, I feel like she and parents of downs kids and parents of kids who have autism really do have special needs and deserve the help.. I have a slightly harder than normal kid i feel.. or maybe I feel this way only because so many people only see the good side (like when we stop at their house and they have new toys and pets or babies which DS loves, so he acts normal), and it is only me and the psychiatrist and his teachers who have seen him consistently which know that something isn't right.

Anyway, I'm rambling I guess...

At the moment I'm very worried about funding in a private school for his aide for prep next year. Does anyone know is this funding is federal or state and where I can find out info about how it is allocated? At the moment just from qualifying for funding for delays in gross & fine motor, speech & language etc, he will have an aide to share with another child for critical learning hours, and not every day, which i feel is a recipe for disaster. It isn't the school's fault, it is a tiny private school that funds almost all the aides themselves or from charity donations from within our religious community, but I feel if my child is classified as disabled to receive funding for an aide in a public school they should get just the same amount in a private school. This is the next fight I have on my hands I feel...

I feel so exhausted jut from the diagnosis process, and the journey hasn't even begun.

How do you guys keep it all together?

Welcome Yael - sorry that it's under the circumstances but glad you finally have a dx and can move forward. Even if this time is tinged with grief (totally normal) at the struggles you might face and the worries for the future, remember that you've already been struggling with this, but now you can get much needed support. As for feeling like there are kids in greater need of the funding, I felt the same way at first (especially as it seemed like we were having money thrown at us from all directions), and as DS is high functioning it sometimes does feel like we've got it easy compared to others. But if it wasn't for the funding, DS would not get the services he needs, and I can't deny he gets great benefit from those services.

As for keeping it all together - when I've figured that one out I'll let you know LOL. I sometimes think that the only way I keep it all together is because I know that the alternative is worse. :hug:

Hi guys, by the quietness here I reckon we are all in a similar boat. Christmas with Issues.

We've had an awful 10 days since being back from the US. Its been beyond horrible. I want to forget Christmas and pretend its not happening, return all the presents and give up. Hide in a hole for the next 5 days or so.....

Too bad.... its not her fault. Really, I mean its not her fault that Christmas and everything involved is over stimulating and full of sugar. Its not her fault we went overseas and came home and have to re-establish her groove. Its not her fault that its school holidays and her known routine is non existant. *groan*

Yesterday was better. I set a timer every 2 hours and did OT calming exercises. We only had one meltdown and she didn't physically attack me at all.... whew.... best day so far!!!!

Christy - I am so over it atm aswell...why cant we have a parent and ASD friendly Christmas?? :(

Its 8.30am and we've had 4 melt downs already...apparently I dont love him, im mean, I hate him and he is sorry he's been noisey and rude 5 times over. Even the promise of taking him on a 'date' with me hasn't helped :shakehead: .... im sick of the nastiness from him, the hurtful words about nothing :crying:.
Never fear he'll calm down by lunch, then number 2 starts...tag team look out!!!
M winds up around then and then its hit, punch, kick, scream central until bed time. I can alway's see when he start's....hello tippy toe walking and flappy flap hands and NO NO NO.

I know exactly what started this morning's adventure with W...PIL's came up from Melbourne yesterday, was a good day BUT they unwrapped pressies...and W doesnt understand why we unwrapped them yesterday when the big fat man comes on the 25th..he think's all present's are from the fat man sigh. MIL was pushign for W to make paper plans from the book he recieved for Christmas with the paper that came with it....but in W's eye's paper is for drawing on and it was to much Look's like for sanity we might have to explain the truth on the matter so it doenst waffle him up any more next year...but then if he know's the truth then he'll argue black and blue that there isnt such thing with V and break her heart....auughhhhh I just cant win atm.

So Christy hun...that hole your hiding in, make sure its big enough to fit a few more of us in it and let it be known, I'll bring the vanilla vodka!!!

There's vanilla vodka in that hole? I am sooooo there with you guys.

Is`it only ASD parents who dread school holidays? I feel like we're stagnating here atm.

Oh dear, we have been pretty slack at welcoming the newest members to the Supermum club

*passes out Welcome showbags - these contain full size bottles of Vodka, Scotch and Bacardi (since it's summer and all), Bubble Bath, Earmuffs and Henna for maintaining your locks and covering the greys. Also a spare blanket for you to hide under.

Mitch is going ok so far, getting INTO the school routine went well, but he was starting to lose it and often at school. I'm going to make sure I do some calming excercises every couple of hours too though. Today we are going to the local pool, as that always works a treat. Pity about the cold weather, I have a lovely pool in the backyard....

I SERIOUSLY hate living here, but having the pool has been utterly wonderful. It calms him, gets his energy out and works every one of his muscles. I don't know what I'm going to do when we move back home. Whenever that will be.....I spent my oven money Xmas presents :lol:

I'm refusing to panic, but at the back of my mind I'm really worried about next year. It's going to take AGES to get him back to school routine, new classroom and Aide - I'm desperate to get back to work ASAP :(

Ah so its christmas that is possibly making Ripley so feral. Makes sense. He's had a shocking last couple of days and is in fine rotten form today so Im hoping he keeps that up for the new pediatrician this afternoon.

If anything his attention span (or lack of comprehension) is getting worse. He threw a car at Dh yesterday so got timed out in his room for it. He knows that after that you have to say sorry to the person wronged and hug but yesterday he just wouldnt, or couldnt, say sorry so we ended up having to just let him out of his room otherwise he'd have been in there all day. Its getting very hard to punish him when he doesnt even 'get' it you know? I asked him quite a few times yesterday "Did you throw a car at Daddy?" and he kept saying "No." then telling me Daddy locked him in his room.

Lu - is swimming a good calming exercise for ASD kids? Or is it just water? You could look at investing in one of those inflated pools so you can put it up and down as need arises (obviously winter it would be down). Have you thought about swim lessons? I know the pool Im going to be working for has swim lessons for ASD kids. It is tailored specifically to their special needs and they seem to have alot of fun :)

Hello to everyone else! Hope your hanging in there.