Aspergers/Autism/Sensory Integration Chatter #2

[Cocolove]

ok so after some suggestions, some googling and a chat to a peadiatrition they are now looking at hugh functioning autsim god I wish they would make up their minds, I guess they were doing what I was telling them to do, I actully had never heard of HFA & in no way do i understand it, I do know that I am going to have calm down a bit & learn to be gentle with her, learn to not get so frustrated

how do you do that

[christy]

Butterflypirate, I'm pretty sure what you do is breath. Never expect anything, if you expect them to behave as "NT" or "normal" children do, you will be let down everytime. If you expect them to behave the same way if things happen, you expect them to meltdown all the time... they may just do that... or they may surprise you.

Seriously, get that book I suggested and read it a bit. It goes through the confusion over diagnosis and the different things that overlap. Autism, Aspergers, ODD, ADD, ADHD, Sensory Processing Disorder, Dyslexia, Learning disabilities.... all of these have overlapping behaviours associated with them. Its very hard to nut it out and often times a few of us go through different diagnosis before we find the ones that fit what we are going through. Matilda is autistic... and part of that includes sensory processing disorder. Otherwise I would say, she has severe Sensory Processing disorder +/- Autism. I have learnt to not care about the labels but care about her treatment. We have taken the Autism label but haven't treated her any different than we did before the label, and you know what? I'm still not entirely confident with our label 100% of the time.... but we are getting funding for early intervention through it, and she desperately needs that, so we will get her what she needs.

FJ- often teachers have a hard time seeing that behaviours are different at school than at home. BUT out of Matilda's school of 18 students, I know of 5 that go home and have completely different behaviours. One comes to my house, and the minute her mum opens out gate to pick her up she explodes... she's 11. She's an amazingly behaved kid here and I love her dearly, but I see that she's extremely hard work for her mum.

[*Efjay*]

Whats that book?

[christy]

"The Out of Sync Child" Its written by an OT (Occupational Therapist) who specialises in Sensory Processing Disorder. Its just that 80% of people on the Autism Spectrum have SPD as well... so there is a huge amount of overlap, especially for those who are high functioning. Sometimes identifying the SPD and working with that is enough... sometimes you have to go further for other forms of help and that is when a diagnosis is helpful.

[Early Kids]

That book sounds excellent! I'll have to look into that.

Nothing has really changed for us, Brendan has been in therapies since he was 11 months old, before that he was just watched closely by the paed and CHN. To me Brendan is normal, but that's only because I don't know any better. I am realising now that Tristan is getting a bit older that Brendan has been different all along, but that's not a bad thing. I choose not to use the labels IRL, because at this age they make no difference to us, he is getting the same treatment he would with or without the label of Sensory Integration Dysfunction (I do find it amusing how it has two names lol) For Brendan to enter into EI would mean constant trips to Perth and much more strain on our family, especially financially. As it is I choose not to claim the carers allowance (the only cost in Brendan's treatment is time and fuel, all his therapies and appointments are free), but this may very well change after Brendan's paed appointment. I would like to see Brendan in EI, but I would much rather it done locally which atm is not an option.

I have 3 main concerns for Brendan right now. 1) his ears, it's infection after infection atm and we are still yet to hear from the ENT about an appointment. 2) his weight and bowels, he has been the same weight for 12 months now and has never really had a firm poo (sorry for the tmi) I am under the impression that he has some kind of intolerance, but again the Dr here has said the paed is the best person to talk to, which is not till May. And 3) School.. I'm concerned that because he is already well behind his peers, he is going to be left further behind. And I realise that school is not for another year, and a lot can happen between now and then, but enrolments are in Aug!

Everything is hanging on the paed appointment. In the meantime I just have to remember he is happy and relatively healthy compared to what could have been, Brendan has come out pretty well considering his birth.

Sorry got rambling there, but it's good to let some out.

[tan32]

Hi ladies,

well Hamish's appointment at the pediatric unit is next week and for some reason today I am just having a breakdown over it all. I am in tears thinking about it all.

I am worried for him so much and even more so that i get told he is fine. I know that sounds strange..
I sit and run through all his traits and problems through my head over and over...
At the moment his biggest problem seems to be when a friend doesn't want to play with him at recess or lunch he just bursts into tears, he in fact becomes inconsolable thinking nobody likes him, when this is not the case, his friend just wants to play a different game.

sorry for the ramble just having one of those days..

[Cocolove]

Tonight Monsta wee'd on the bathroom floor just decided she was too busting so she pee's on the floor I dont understand this im getting so frustrated I just want to understand why she acts this way its so upsetting

[christy]

Sally!!!

have 3 main concerns for Brendan right now. 1) his ears, it's infection after infection atm and we are still yet to hear from the ENT about an appointment. 2) his weight and bowels, he has been the same weight for 12 months now and has never really had a firm poo (sorry for the tmi) I am under the impression that he has some kind of intolerance, but again the Dr here has said the paed is the best person to talk to, which is not till May. And 3) School.. I'm concerned that because he is already well behind his peers, he is going to be left further behind. And I realise that school is not for another year, and a lot can happen between now and then, but enrolments are in Aug!

I nearly dropped to the floor when I read that....

Matilda did not gain weight between 12mths and 24 months. She lost some weight before that as well. She did not do a formed poo until she was over 3 years old. At 3 yrs old, she was diagnosed with a cow milk protein allergy, and we went off all milk in our diets and... a month later she started doing normal poos and gaining weight. Maybe while you wait try to go off milk? See if that helps, at least drinking milk... Cook milk can change some proteins not all, but that often is all that you need to do. It can't hurt!!!

tan, I hear you. That is what I felt throughout all that assessment process again recently. It was stressful.

butterflypirate, Matilda has issues all the time with wee. Apparently its common for kids with sensory issues to know when they need to do a wee, so suddenly they are busting and haven't realised and don't make it to the toilet. Matilda is nearly 6, and is fine during the day now (for the past month) but is no where near night trained.

[Cocolove]

Thing is monsta has been TT since she was 2.5 and its a new thing that she's doing, she isnt even fully diagnosed yet and its like all of a sudden the older she gets she seems to be backtracking,

[Lulu]

BP, it is so hard and confusing to understand wtf is going on in their heads sometimes (or more than sometimes ). Please try to get the book Christy recommended and I have one that helped me feel alot better...in fact quite proud that my son is "wired differently" as I call it.
This book is called "Not even wrong", I got it from the library and I highly recommend it. With libraries these days - or at least the ones here - if you have a membership you can search for the books you want, reserve them or even order them from libraries in other areas, all online

The one thing I have in my favour is the fact I am a fair bit in sync with my son.....because all my "sensitivities", the things I have resented about myself for a long time, have probably come to him from me . My head explodes if I get too much information, but at the same time I crave it. I am super sensitive orally and aurally. So if he was wigging out with the outside noise, I was a bit too.

Just remember you are not alone here xoxoxo