Aspergers/Autism/Sensory Integration Chatter #3

[Ambah]

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...

[mrsmac]

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

[christy]

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 but its all good. Now... onto visiting family & friends.... *bracing myself*

[Freya]

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 ****.

*%@$.

[Nelle]

Oh man! 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...

[Freya]

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.

[Nelle]

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?