Aspergers/Autism/Sensory Integration Chatter #4

[Early Kids]

Apologies if I miss anyone, lots of replies here!

HA, I'm following your blog and had a skim read, will read it properly tomorrow (hopefully)

Gigi, you are more than welcome here x Definitely get onto the OT and do a Sensory Profile, Brendan (DS1) has SPD, which was diagnosed at 23 months old.

meow, I hope the move goes smoother than anticipated.

We have food issues here, always have had... we had food aversions and not tolerating solids when he was younger now we have intolerances. Currently dairy-free and most likely will go wheat-free too (we've already cut out heaps of wheat anyway) Both my boys have problems with dairy gut issues, poo issues and eczema flares up too. Because both my kids have weight gain issues, they are both on a multi vitamin and are both watched closely by a dietician and the CHN etc.

Reports I'm used to. We were told before Brendan was born that he would be delayed and he was at risk of a whole range of different things from being born so early. But they still aren't any easier to read. Being told on the phone or to your face is hard, but seeing it on paper is just so confirming. Brendan's ASD diagnosis report was especially hard, seeing the thing they wrote down about Brendan, even though I had said them and witnessed them, was really hard.

[suse]

Thanks guys - will look into probiotics for gut issues. Also will book a doctor's appointment and see if I can get a stool sample analysed. Might have some clues. One small advantage of him not yet being TT'd, at least it's not difficult getting a sample

lilima - yep, I'm a bit apprehensive. DS has been brilliant these last few weeks, lovely, funny, charming, affectionate and I've really felt we've got each other lately. When he started EI last year we had some full-on meltdowns for a long time - even though he was learning so much he was possibly responding to the challenge of it, I'm hoping that the change doesn't prompt it again this time but am expecting some difficulty. But he's seemed so happy these last few weeks, with less anxiety especially.

HA - I went to have a look at your blog and the link didn't seem to work. Maybe it's just me being dopey? Anyway, I'll try again next time I'm on.

Off to bed now, to all.

[christy]

suse we had stool samples with Matilda as prior to the allergy testing she used to do 5-6 poos a day. I can happily say she's not lactose intolerant and did have worms.

[suse]

That's what Euan's like - a literal poo machine. Worms - now that's a possibility...

Anyway, what are you doing right now answering my questions about poo my lovely?

[christy]

I'm in Cai's loungeroom, in bed on my mac with Cai on hers next to me drinking tequila sunrises.... the way it should be

[Inertia]

its uniquetoo.blogspot.com without all the extra stuff, lol.

tbh, the only real issue we have with princess' gut is that its apparently forever empty. Child just keeps eating.

I added DH as an admin to there too so he will be adding stuff. Its been a long time coming, but I have been in denial for a long - loooooooooooong - time. But really, with 2 teenagers, it was about time I dropped the charade that my girls were going to be diva roackstar surgeons and my sons would be walking around in camos and combat boots. I think in a way DH and I were feeding that line of tripe to each other too and so it took both of us to have that *ding* moment.

Now we have, its just time to get that help so she can be a diva rockstar surgeon if she so chooses to be.

[suse]

Christy - *Suse gets a little smile on her face at the thought, and raises glass to you and Cai*. And sends these Big squishy hugs. Love you guys.

[meow]

seeing the thing they wrote down about Brendan, even though I had said them and witnessed them, was really hard.

That's SO true. I read this bit and felt gutted... but I was right there and go through this everyday. I think it was the realising that other people noticed. Makes it real.

He crawled behind his mother and then sat and hit his head against the wall making distressed sounds. He used gestures and sounds to ask his mother for his dummy.

*sigh*

I have been researching foods we can get in the states and I think we'll be okay. Theyhave corn thins, peanut butter and apples so that's 95% of his diet anyway. Only thing they don't have are squashed sultana biscuits and nimbin cheese (no, he wont eat any other type of cheese!)... but now we're wondering if we might try and cut the biscuits anyway to see how he fares gluten free.

We have awful poos here too- seems to be a trend?! It's always been that way and after a bout of gastro where dairy caused major poo issues we cut dairy for ages and it didn't improve the poos to normal so we figured dairy wasn't the issue and slowly reintroduced it. But I was reading about regressive autism and it said that may be an autoimmune condition similar to coeliac. I'm looking forward to starting some allergy and stool sample testing though- we need to work this out. And a good probiotic huh? Have to work out how to give it to him... he's random with drinking milk and there's nothing else to hide it in. He used to eat yoghurt (well, he used to eat LOTS of things) but he keeps rejecting more and more foods.

I'm nervous about the fact that he keeps getting worse- when will it stop? I cant stop watching this video of him at 10 months.
http://www.youtube.com/watch?v=hjbelAbYiKw
He's asking where the dog is- never asks anything now. He is still very smiley though Today was a bad start. Took him to FDC and he melted down. First time ever his carer saw him hitting his head. We ended up coming home again. So now he's home and the naps I was hoping to have with the baby who was up all night are less likely. It's going to be a TV day.

I've started following your blog Honey Aspen- it's a great start. Thanks for sharing! I think I need to do the same.

Thinking of you Christy

[christy]

They have squished sultana biscuits hun, they are just called something else... they don't have sultanas, they have raisins.

meow, where are you going to be? I grew up in the US and there are heaps of things/organisations/shops that can help. I am from California, and was just there 6 weeks ago. Shops: The shops there are enormous. If you think the section for baked beans and spaghetti tins is big anywhere in australia, you haven't seen anything yet. A whole isle... its crazy stuff.

Runny poos.... Like I said Matilda had 6 loose poos a day until she went off the milk and went onto probiotics. It took her 2-3 weeks. She is now a once a day girl, and if she does more it generally means worms or she's had a milk product. She was given a slice of cake once... the next day she did 6 poos and I couldn't figure out what happened until my MIL told me it happened on her watch by accident. She caught M with the last bite in her mouth. Now MIL doesn't keep milk based products at her house except her milk.... We've recently trialled milk in cakes again and found that she is okay with a little bit here or there, but if she has say a biscuit or muffin two to three days in a row... bums away...

I'm here and as long as I don't think too much I'm okay.... but I'm allowed to think here and grieve without worrying about M. Thats okay I think.

[Yael]

I have to be quick as I'm having a bad day today...

DS loves kinder, i know he has a great time when he goes there.. but every day when we get there I have a problem with getting him inside.. Getting out the car is normally fine (occassionally he asks for mummy day's, but normally I have a dr's appointment so I say we won't be doing anything fun anyway), and we walk together through the grounds, he is normally fine, but then just outside the kinder building he baulks, and likes to do this hiding thing.. I think he thinks it is funny.. he does it at my mum's also, likes to ring the doorbell and then run away and hide... I don't want to drag him inside, but it gets annoying every day, and I like the try and settle him inside and see that he has started an activity not a meltdown, and he starts prep in 2 weeks, and I'm supposed to drop him at the gate, they try to say the parents shouldn't come up to the classroom with them.

Any ideas?

I'm feeling so lost and overwhelmed at the moment. So much to do and no time or energy to do it. Haven't even applied for my FACHSIA funding yet, let alone the billion calls I have to make to therapists who don't return my phone calls or do what they say they will.

[tan32]

I had to come in to post today.
I have thought alot about LULU this past day or two for sure her advice and humour was always welcome.

Well I am not sure how I am going to get through today I am seriously losing it. I cannot take the screaming and hitting and yelling it is driving me insane. I can't get the 2 yr old to understand to leave his older brother alone, how do I get my aspy to understand that his brother is 2 . How do I get them to get along without the constant screaming fighting and yelling. I just want it to stop.

[Early Kids]

Brendan was a 6+ times a day too, no more dairy and he's 1-2 times a day now and a thicker consistency too (LOL about discussing poo) Must get a new jar of probiotics too, I just buy the Inner-Health Plus. Is that what you guys use?

OH MY.... ASD meltdowns I can deal with.... I know why they are there and mostly what I can do to help, but Tristan is just grrrrrr.... he starts a tantrum and then sets Brendan off! All day today, Tristan just woke in a bad mood and he's been in Brendan's face and of course he hates that so he's lashing out and then having a meltdown because he has no space. gah...

Have been thinking about making a space in the house where Brendan can go to be alone when he needs to. Like a personal cubby house. Not sure how I'll keep Tristan out though

We did our FaHCSIA funding thing yesterday with the Autism Advisor. Just waiting on the letter. Only problem is just about all the providers are in Perth... only 2 come to here and it's not very regular. Am hoping to be approved for DSC funding as that I can use here with Brendan's current therapists. Also have claimed for Carers Allowance, just need the OT or Speechie to fill it in for me so I can get it back to them. Am hoping in the very least for the HCC, Brendan's antibiotics are getting expensive The most important thing right now will be the help he gets at Kindy though and the support I can access now too.

hoping tomorrow is a better day x

[tan32]

ah Early kids I hear your pain.

Hamish retreats to his room when things get to much, it has and always will be his sanctuary. The problem is Lachlan can now open his door and will go in there constantly just to touch things.
This drives Hamish crazy, he hates his things being touched, he hates anyone in his room unless he has invited them. The door to his room is always closed whether he is in there or not but Lachie opens it all the time..
I have been thinking of how to deal with this but have been coming up empty......any ideas anyone