Aspergers/Autism/Sensory Integration Chatter

[christy]

Blergh

[maz]

OMSL....I didnt know if that was a burtp or a fart then

Having one of those days too hey babe???? im ready to make Wilhelm a wall hanging atm

[christy]

mmmm yes. It took an hour of screaming on both of our parts to get Matilda ready for swimming. She refused to eat. She still hasn't eaten anything today yet, no water, nothing. She keeps falling over because she's not looking where she is going, she can't listen... even to 'Stop!!! Don't run into that...."

*groan, moan, *****, cry* ARGH....

thus...

BLERGH

[maz]

oh siat Christy......Wilhelm is in a whinny mode...I hate fridays cause he's home and can be so horrible.

[barbie-up]

even to 'Stop!!! Don't run into that...."

Sometimes I think our kids just hear the 'run into that' part and miss the rest !

Try to ask them to do what you want, not what you don't want - like asking them to walk, instead of 'not running'. 'keep your toast on the table' rather than 'don't throw your toast around'.

I've also got this thing going at bedtime and bathtime - not saying, 'its time for a bath' but rather 'what toys are you going to play with in the bath'. Same with bedtime, 'what books are we going to read in bed'. Don't give them a chance to say no.

My Alex has just turned 3 and we're in the process of getting a diagnosis. I thought there was something unusual about him just before he was two and a half. We go to an early intervention place once a week, their program is based on the floortime program from the US and gives you tactics and things to use everyday.

[christy]

Sorry Barb... I was in a bad place when I read your post, but I can answer now. I do say the right things... I rarely say "Don't!" but sometimes... in the thick of these days... you say what comes out first and don't think. I've had an awful time of this with Matilda because everyone keeps telling me what I am doing wrong and how I should be doing things, so I take things very hard sometimes even when they are given with the best intention.

Well Wednesday we had our first official OT appointment. I felt comfortable as soon as we got there. She asked me what we the hospital had us doing for Matilda. I said "um... nothing, we were given a diagnosis of sensory integration disorder and a request for further assessments for Asperger's" She was horrified. She said "Did they know you were moving?" and I said yes of course... she said "and they just left you... that is appalling" and I was in love.

I told her of a few suggestions from lovely friends, using ipods, ear muffs, picture story books of the move, preparing her in advance for things. I said we had some exercises my OT friend suggested like "rolling in a blanket, jumping on a trampoline, twirling etc...".

She said "You are in a crisis and everyone has just dumped you. You need to work through a crisis and then we can get you exercises etc to work on"

She wants me to do 3 A3 size charts. One for the week and what is happening, one for each day which we do in the morning to show her what is happening when, and one for the lead up to Christmas and the silly season. We've got the Christmas one done so far. But every morning we tell her that what is happening next and how things are going to go. We have started to enforce a stim free time when lights are off and everything is off, maybe a quiet video if she's having a good day, and she has to lay on the lounge for 30 minutes. This is helping heaps already!!!

So our developmental paediatrician appointment is Monday.

[tiggerandpooh]

christy sooooooo glad that you have finally someone in your corner giving you the help you need - and how brilliant that even in such a short space of time, it has had results.

[~Saram~]

Aren't OT's magnificant! They really 'get' our kids. The charts sound great..

[christy]

We saw the paed last week who "surprise surprise" told us it was all our faults & it was just behavioural after we were there for 5 minutes. *groan*

He said she was unable to regulate her emotions as well as sensory integration disorder... ummmm yeah.... and???? So he wanted us to start a thing called "Watch,Wait and Wonder" in order to provide Matilda with a way to express herself without our interfering but our presence. We have tried it and... nothing. No change... okay its only a week but seriously?? It means both DH & I have 3 turns a week of spending 30 minutes alone with Matilda. We sit on the floor with her, with some toys and nothing else. We don't initiate anything, we sit, if she communicates with us we are allowed to respond but we aren't to stifle her. So the first time I did it, she screamed because she didn't want to be in that room, so we moved and an hour later... maybe we had 5 minutes of doing it the right way. Than she screamed for the rest of the day. The next time I tried it, she went okay, but then screamed the rest of the day. Whenever DH has tried to do it, she has refused and screamed for hours.

I told the paed that I would continue to do it, but I felt like it was something else someone wanted us to do, but it just left DH & I open to more criticism and I didn't like that.

He has referred ME to councelling because I am a "distraught" mother.... I'm sorry, I don't swear but WTF??? OF course I'm frigging distraught!!!! WT???? Wouldn't you be in my situation? On the best day since our move, Matilda has screamed for a minimum of 2-3 hours. ??? Distraught????

*breath in, breath out*

[~Saram~]

Oh Christy! Big hugs to you! go and find a different paed or if you feel the need perserver and detail everything that is going on so when you walk in next time you are armed with ammo! Will your OT write you a letter/report that you can take in? Oh another thing my SIL did was video tape her DS and took that to the paeds office.

As for the couselling. We were sent to couselling too! It was such a huge waste of time but did help DH and get on the same page on some issues in regards to behaviour. Is amtilda seeing the psychologist too?

[maz]

**** - what a complete ********!!!!! *maz' blood boiling over now* Its one thing for these 'professionals' to give us advice on how to cope and do things with our kids but lets see how they would react having to live the reality...having them 24/7. Honey...my advice...stop friggen doing it. If its doing your head in stop it. You honestly wont get anywere and whats the point of making the whole house upset when its obviously not working! Maybe the arsehoole should have given you a referal to an Occupational therapist the ****!!! Oh I am SO angry!! Let me at the *****!!!!

We're not having a good time in this house either!!! Last day of school yesterday and Wilhelm just doesnt get it Today is thursday mum...its not my day off. And Vy has started being a turd which sets Wilhelm off! She's doing the screaming in public thing...and saying no, kicking me...I could have killed her last night at mass. And Mateauz got a vrius the other week along with conjuntivist which has made him go backwards so it looks like we might have to get a special leg cast to stop his leg turning out

It just never rains softly these days

[christy]

It just never rains softly these days

Nope... it fricken hails.

Poor Wilhelm... its so hard on these super kids. We've had a huge December calender up on the fridge (thanks OT!) and have been counting down the days & talking about Daddy taking holidays and Mummy working more... and Christmas day. Matilda's doing heaps better with that. I started the daily run downs too. I don't have the A3 poster board up yet, but what I do is in the morning when she wakes up I say "okay hun, breakfast first, than you are going to get dressed and brush your hair & your teeth" Than when we are up to brushing hair, I prompt her as to the next thing. Thats helping. She pushes boundaries, but is less hysterical all the time. I can see her anxiety levels dropping.

[maz]

I think the anixety levels are what get to me. Wilhelm wet the bed 2 nights ago and wet himself straight away at school. I got so peeved cause the stupid receptionist put their clothes on him (which set him of more) when I have a bag there with his name on it and his own clothes in it.

its fantastic that your finding things that are working babe. We dont you boards but for chirstmas we got an advent calender (my mum gets them for the kids) and that helps.....Ive also told him to empty his school bag out which he's happy doing..

I am so having one of those days today.....I could just sit in the corner and cry

[~Saram~]

Maz - holidays suck! We are on week two and I'm over it! Yesterday he won't even go to OT everything is so out of wack. I hope Vy and Mateauz are back to their selves soon so you can have a bit more peace and that Wilhelm settles for you! DS seems a lot calmer since we got a letter with his new teacher etc, has put his mind at ease a little but the last week of school and first week of hols were the worst! Wish I could give you a hand!

Christy - I'm pleased the day planner is working, which reminds me I have to get ours fixed up, that might help me from tearing my hair out

Also we were told by his teachers that he has been getting on really week with this kid at school and I saw them at a birthday party the other day (BTW have I mentioned how much I hate B'day parties - that's a whole other story) anyway they did get along well, talking about pokemon and acting it out! woohoo I thought and grabbed this kids number. Anyway organised to have a play date - what a disaster. Xander ended up miserable because this child wouldn't stick to his script and then there was the competitiveness - it was almost as if this child could perceive his weakness and just played on it. IYKWIM. I don't know why I bother it always ends badly :-(

Also DS is sick but it is so hard to know what's wrong as he can't pinpoint where the problem is. He won't eat and says his tongue is sore - his throat looks fine? And now he has a sore leg? From his hip to his ankle? It doesn't seem to be muscular as if I poke him he doesn't flinche - just hurts to move and walk on??? I don't know what to do?

[christy]

Man I wonder if the world understood that when we mean "I need a break" that is exactly what we need. A full break from everything. I wish it were cheaper.

I found a siblings camp for siblings of Aspergers/Autism which has a big camp just for them. I was thinking... there should be a "Mummy weekend" for Mothers of Super Kids.

I would miss my girls something fierce, but I would also get some time to destress.

[maz]

Sarah - we use incremin, a liquid iron supplimetn for when WIlhelms doesnt eat...works great and I know atleast he's got osmething in him when he's down and out. I hate 'friends' of our kids that do that. Poor Xander..maybe next tiem he has a play date get the play dough out and supervise them playing so you can calmly interact when they have 'off' moments.

Christy - I so hear you babe.....I need a break really bad..Im so nervous and jumpy atm. We saw those camps down here but they cost almost $2000 which is something we jsut cant afford. We've never been on a family holiday so I have bitten the bullet and told jed next september we're going to QLD. We are having so many issues with accomidation! GOD!!! glad Ive started organising now. Cant FLy up cause Wilhelm would freak out about the pressure and the closeness to strangers in a plane...also atleast he'd be familiar in a strange place with our car. Need accomadation so I can cook his meals and have a room that is secure so he doesnt let him self out.....god!!!! Ive been headbutting walls. Jed's dad is looking into timeshare for us up there cause they have unit or little house type accomadation which is perfect for us. Ive gotten onto some of the netwrok down here to ask for some help towards funding for it. I never ask for help, not even respite and my case worker said I should for once...why not but it feels funny asking for a hand out...just not me normally.

AND we had a wet bed AGAIN last night!! nappy to night for someone he's going to go OFF!

enough of my mumblings...better feed the tribe

[christy]

Where in QLD? I can help you find somewhere. And Saram is there but may be back on that side of things

We stayed at a place at Coffs Harbour.... Tropic Oasis. Which was fantastic. Not QLD but good. There were pools and a lagoon to row little boats in, sandboxes, self accomodation so like little cabins. Walking distance to the beach... noice.... That was on our way down from Brissy.

[maz]

We're looking near the theme parks cause Wilhelm is movie and Director made and NIkolaus loves sea animals so we'd like to go to Sea World and Movie world.

So somewere within 1/2 an hour near that would be ace