Aspergers/Autism/Sensory Integration Chatter #4

[christy]

Argh all of those do hurt yes. I remember the first time I heard "abnormal".

Me, well I've gotta leave DD to get to Melbourne today. I find it so hard to cope in doing social stories with her to explain that I have to go and grieve Lucy. When I tried once she put her fingers in her ears and said no.

I explained that Cyclone's mum died of a broken heart. She understands that, but she doesn't understand how she is going to marry Cyclone without Lucy I cried but she really wants me to explain the logistics of it now.... I can't....

[suse]

Oh Christy Now I'm crying too.

meow - you have a lot going on at the moment, don't you? DS was just diagnosed three weeks before DD was born, so I know how you feel in that respect. All of a sudden I worried how he was going to take it from a completely different perspective, and it was both better and worse than I expected. I guess that in terms of the move, all you can do is plan to make the transition as smooth as possible, know that there's likely to be meltdowns no matter what you do, get through them as best you can then come in here for tea (or vodka) and sympathy. The food issue would be stressful. Can you take a supply of some of his favourite foods with you? Or find out whether there are equivalents where you are going to be living (although spectrum kids are great at picking 'fakes', so this might not work too well)? I get that with the fussiness thing, so many people think that the 'eat it or don't eat anything' strategy works, but not with spectrum kids, they'll just not eat anything. Fortunately our DS is good with most food, his quirks tend to be texture rather than taste or colour related so I can work around that pretty easily, but when he does go through his rejection phases I nearly tear my hair out, because he's skin and bone.

And oh boy yes, the reports and the language they use can be a real kick in the teeth. And because they are technically worded there's nothing there to soften the blow, is there?

Whilst I'm in here, does anyone else have gut issues with their kids? I think I'm going to have to get E's gut checked out, or look into food intolerances, because his poo is just terrible. He generally poos 3-6 times a day, ranging from normal in texture, to what I describe as butt-vomit. Which is half digested, acidic smelling yeurk. Usually we get one of these a day. We've cut as much acidic food from his diet (tomatoes, kiwi fruit, grapes, he doesn't eat citrus, can't think of anything else), he does eat dairy but mostly yoghurt, he doesn't like milk to drink. I'm starting to worry that we're going to have to go down the GFCF path, poor kid won't have anything left to eat. But he doesn't seem to react specifically to either gluten or casein. It's really got me stumped, and I know that because it's so random, it's not going to be a cut and dried answer. Sometimes it's linked to behaviour, but not always. Dunno?

And Christy, more I wish... I wish this wasn't happening.

[christy]

Suse we have heaps of food issues. I went to a allergist and yep Matilda is allergic to one of the proteins in cows milk. She's not out grown that. She's also intolerant to salicalytes. I found getting a good probiotic has helped her. I have to add it to her chocolate rice milk, but whatever... it gets it in her. She didn't react to all three different sorts of tests to gluten. She did show that she has an intolerance to oats though.... I have a list of her intolerances and milk. I feel she's grown out of her oat intolerance, but I don't overdo it just in case.

Okay, I said I was going earlier and I mean it, my bus leaves in 20 minutes...

[Inertia]

Thanks, Suse. Lu was so incredibly helpful. I initially made a separate post because I had no dx and really no idea. She told me to come over here because it sounded spectrum and I could bounce it off the lovely ladies here. Sadly that thread vanished into the 2 week hole in the interwebz.

Its probably a bad time now anyway. Will see how we go with the paed.

Take care.

[lilima]

We have some gut issues here too. I second Christy. A good probiotic.

Christy- hugs!

Is anyone stressing about returning to school/Childcare will go? I am going to do some social stories tomorrow to start to prepare. He is saying he doesn't want to go back to kindy.

Eta-meow- I once had a report sent to me in the post. No discussing first, and it said J had a global developmental delay. I cried for days. I also gave the centre an earful about sensitivity to parents. I basically have no relationship with them now.

[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.

[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