Aspergers/Autism/Sensory Integration Chatter

[Trillian]

Christy, how have the past few days been for you hun? I only just caught up on this now sorry.

[christy]

Things are going okay, I'm waiting with baited breath for Tuesday's assessments. They are the final ones prior to all the different groups meeting together to decide what they think.

BIL was diagnosed with Asperger's on Tuesday and has been having a hard time the last few days coping with the reality of it. I am finding that supporting him through this has helped me. ~Saram~ was so lovely & met me on Friday at a park & we had a brief chat while chasing children. She lent me 2 books on sensory processing/integration which I have had a quick skim over, and am looking forward to reading through some of it tonight.

Of course today she went to an indoor playcentre for a birthday party & did extremely well. She came home & had to destress by laying in bed with lights off and no sound but after 15 minutes of that she was ready to get up & eat lunch and have a real rest.

[Trillian]

Well I hope when they all get together for their meeting that they can come up with a definative diagnoses (or none would be better) so it ends all this too-ing and fro-ing for you. I'm really happy for you that she coped so well after the party today, it must give you a few anxious moments when you come home before you know which way she's going to wind down from it all.

[MantaRay]

Oh Christy, I am so glad Matilda was ok afterwards. She did really well today.

Best of luck for Tuesday. I'll be thinking of you. Please call me if you need to chat afterwards.

[~Saram~]

Hi gals

Christy - it was great to catch up with you, Matilda and Jovie - next time I'm bringing a baby sitter so I actually get to sit down and have a chat :-) Hope the assessments are going well and that you have some answers soon.

We have had such a difficult week with coming home from Brisbane (including our car breaking down in Mackay so an extra motel stop over + now having a hire car - not good for our routine) and trying to get back on our diet after the usual holiday + grandma diversions. Xander is so depressed and emotional at the moment it's like he is a ticking time bomb. We have another OT session tomorrow and I'm not looking forward to it as OT under stress never ends well :-(

Hope everyone is going well with their cherubs

[christy]

I can understand that now Saram. Matilda had such a terrible arvo because our routine broke down. We had the real estate through our house this arvo and we had to be out of the house, so I decided to pick Matilda up & go to the park. You would think it would be fun, but uh... No. The entire afternoon was stressful.

Thanks for those books! I've been understanding Matilda better and better from reading them.

[Lilly-Pilly]

I'm having a terribly hard time with DD at the moment. Knowing she has sensory processing disorder made everything a little easier to handle everything, but lately its just been awful. Her moods are terrible, not one single day ever goes by without some major big meltdown. She si rude, answers back, defiant, when she gets introuble she cries like you wouldn't believe it, screams at the top of her lungs, yells out all sorts of things (along the lines of AND ITS SO UNFAIR AND YOU DONT EVEN CARE ABOUT ME YOU JUST CAR ABOUT EVERYONE ELSE AND I WONT EVEN LISTEN TO YOU NEXT TIME YOU TALK TO ME AND BLAH BLAH BLAH BLAH)

If i ask her to do something - put your socks away, pack your school bag, tidy your room, no matter what, she carries on like she is so hard done by. She has tantrums all the time, its almost like walking on eggshells around her.

She is an angel one minute, then does a complete 360 and acts like a little monster. She'll get put in time out, she'll scream for over half an hour then come out like nothing happened. If i try to speak with her about why she was acting like that, about why she was put in time out, about why she thinks i was upset and what made her upset she just gets all vague and tells me she doesnt know, or makes up an answer that she thinks might be right. Its like she's learned things that make you upset, so she'll blame that (eg: I miss my dad) when she never any other times misses dad. She sees her dad every few weeks and calls him when ever she likes, but she never gets upset over anything to do with him.

Sh'll settle down after a big tantrum, be all nice, then 5 minutes later ask for something and if i say no it starts all over again. Even if i tell her there is something really special i want to do with her, or take her to, but that if she wants to do it she has to behave herself, and she'll get so excited and can't wait and within 5 minutes she's screaming and carrying on again that something isn't right. Every single thing i do with her ends like this, whether it be a walk, shopping, visiting peeople, going out for coffee, and it just doesnt make sense.

I'm again at my wits end, i ended up smacking her today cause nothing else was working. I'm just having such a hard time of it

Came across some information on ODD (Oppositional Defiant disorder) and it kinds seemed to explain her perfectly. Does anyone know much about it, is there a link between sensory processing and ODD??? I just dont know what to do anymore.

[christy]

Sh'll settle down after a big tantrum, be all nice, then 5 minutes later ask for something and if i say no it starts all over again. Even if i tell her there is something really special i want to do with her, or take her to, but that if she wants to do it she has to behave herself, and she'll get so excited and can't wait and within 5 minutes she's screaming and carrying on again that something isn't right. Every single thing i do with her ends like this, whether it be a walk, shopping, visiting peeople, going out for coffee, and it just doesnt make sense.

Dee that is exactly like Matilda. Sometimes for her the excitement is enough to trigger the bad behaviour returning. Often I cut my losses and stay home because I know it will end in tears.

[christy]

Well we got the OT results back, I'm having a hard time processing what it all means, but I will bring it to our OT friend & get it translated for us

[KidsAreLife]

hi. i have a 2year old boy who is on the autism spectrum. he is getting assesed hopefully earlly nextyear. in the mean time we are seeing a pead who is helping us with our son. its very hard to deal with. he thinks my son is PDD - NOS. would like to speak to others

[Lilly-Pilly]

Christy, how has the translations part gone??

Welcome KidsAreLIfe

[christy]

Well the OT translation went as we expected. She has sensory processing disorder, she got definates all the way.... So now its the wait and see another 2 weeks for the rest of the results. We got the physio back, and it doesn't really indicate one way or another about anything. Just she has low muscle tone and needs to work on evening out both sides of her body (there is an extreme difference from the left side and the right side in strength).... so I have no idea what that one means!!! I don't know if it indicates anything. I'm happy though not to worry about that until the final results. Whatever the case is, I feel justified already in having the assessments done and having the sensory processing diagnosed. I knew she had those issues already, but I guess I wanted someone else to say it was so... someone in the know. YKWIM?

[maz]

Oh hon - atleast you have something to work on now. Make it a positive.....let it help you to stand up and get things organised for her. We have low muscle tone with Mateauz...he couldnt move his left side after his strokes as we made sure that everything that he had to move for made his left hand side work....God I wish I lived near you so I could show you the physio I do!!!! yes we still do it..its not 4 times a day but its 1 -2 a day now. Oh and Massage helps heaps too.

Now anyone noticed what a weeks its been with our kids??? Dame full moon!!! it always sets Wilhelm off. Ive had such a bad week with him...ive cried so much the last few days. I took him to school tuesday and he didnt want to go so I took him in and when I went to leave he had a massive tantrum fit...to the extent of kicking, punching screaming and stomping up and down on the spot. He's never done that to me before and I felt so horrible leaving him at school afterwards. It so broke my heart...I had the 2 little ones with me and Vy jsut cried and cried (Wilhelm and Vy and very close) I had a horrible fight with Jed about it cause he set him off...he yelled at him in the morning and when he's in a bad way its the worst thing to do. I am so looking forward to this saturday cause I get some me alone time for the first time in 3 years but then Im so worried about leaving the kids...especially Wilhelm. I could cry about this now as im writing it. AHHHHHHHH

On a different note...sunday morning we made some coloured rise (which is agreat sensory thing to make and let play with) for the kids. The department for special needs kids have it here as a treat when the kids have done the right thing in their work. Made some rattles for mateauz out of it and a little box for Wilhelm so he can run his fingers through it. It helped him calm down last night thank god.

Anyway enough dribblings...Mauws Christy

[~Raven~]

Dee good to see you! Sorry I have no suggestions for ODD.

Hi KidsAreLife! Need the long hand for these abbreviations PDD - NOS. Sorry don't understand but could be having a vague moment.

Christy I know it's hard for you ATM but like Maz said once it's official you can get the help she needs.

Maz full moon! Hmmm didn't even consider that.

Mason has had a few playground incidents in the last week or so. We got an official letter because he kicked another child. We had a big chat with him and he knows it's wrong but in the moment he can't control what he does. He has been the target of an incident earlier in the year when he was dacked in the playground and since then he has been quite aggressive. Poor little mite was mortified that everyone saw his bum.

[christy]

oh poor thing Raven. I can totally understand. Matilda was sobbing this morning about having to go to Montessori... apparently she has no friends She's 4!!!! So when I went to drop her off, she ran up to one of her "friends" and punched him. Ways to win friends and influence people

KidsAreLife - Welcome Are you on the Aspect site as well? I've been lurking and reading there...
Saram told me about it.

Maz this week has been full of illness as well & generally on the bad sick days, Matilda's behaviour is much better. But then she gets better & gets more and more crazy. Jumping off walls or bunk beds... anything really. I sent her out yesterday to jump on the trampoline even though she is still coughing just to get it out of her system.

[christy]

Sam - Just got this off the Yale University website:

Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) is a 'subthreshold' condition in which some - but not all - features of autism or another explicitly identified Pervasive Developmental Disorder are identified.

[KidsAreLife]

Raven sorry theres 5 parts of the autism spectrum and my son is pdd nos - which christy beat me to it. lol very well described there. thank you.

my dh has asperges which have been where my son inherited some of the gene from which sucks. very worried if we want another child.

christy - i will google the aspect site. i dont know what it is. are you able to pm me about it please??

hmm what can i say. he had a good day yesterday on his birthday but only a bit unsettled today. dreading tomorrow at playgroup. he seams to be ok except at the end when they all sing songs its a bit to much for him so my dh takes him outside for some quiet air time b4 the drive home. or else he will arch back and scream. he turned 2 by the way. were on an 11month wait list for help at the austin hospital and for an official diagnosis. puclic sucks. so in the mean time we have to try and work things out and help him ourselfs.

[christy]

MMMM we waited 18 months to get into our hospital for assessments. Apparently they wouldn't even accept children before 4yrs old up here at the Mater Childrens Behavioural Unit.

Matilda didn't ever handle playgroup well... we always had heaps of screaming and tantrums during and afterwards. It wasn't worth it for us after a year of sticking with it.