FJ - M loves going to play centres and the shops... she is excited at the thought... then when she gets there at that high level of anticipation and the sensory stuff hits her she doesn't last long, or if she does... we pay for it later. Sometimes she's good for an hour and we get home and she is messy the rest of the arvo.
Twinkle, have a look at Sensory processing disorder and tactile dysfunction. Its very common and most of us have some degree of it, however, its when it becomes life altering that they suggest OT.
FJ - don't beat yourself up, OK? Meltdowns are pretty confronting at the best of times, even when you're experienced with them and have effective strategies to help with them (which you won't have yet being so new with your dx) they take all of your energy and focus. You're so close to being in labour it's not funny, it's a really hard time to deal with a meltdown both physically and emotionally. We got our dx when I was 36 weeks pregnant with DD and it was a really intense time. I highly doubt there'd be a single ASD parent who can say that they haven't, at some point, responded to a meltdown in a way that was unhelpful. All you can do is recognise that you're human, recognise how your response impacts on the situation, and learn from it. And you've done this. So give yourself a big pat on the back for getting that far, because it's bloody difficult.
I had a thought, apart from possible sensory issues, possibly Evan would find it helpful to have his expectations managed, maybe even visually (even kids who don't have communication delays do really well with visual supports). The speechie at AQ put it well, people with ASD are such strong visual thinkers that it exacerbates the tendency to need a routine (which is also a need for predictability due to sensory issues); they wake with a literal mental picture of how the day is going to go, and unless you can match the strength of their visual with expectations of your own, it can result in huge conflict (ie: meltdown), as they are constantly being prompted by their own visual which is clashing with reality. You said that Evan told you that it would have been OK if you'd gone to the park, because that's where he was expecting to go. Not to say that you should have gone to the park, but finding an effective strategy for communicating exactly what is happening in the day (could be PECs, could be some other strategy, whatever works best for you) might help manage his expectations. I find if I'm not clear or concise enough, or worse, communicate what's going to happen at the wrong time - Euan hasn't got much past the 'First/Then' stage so we have to work in very small blocks of time - so if I say we're going to have a swim later, meaning later that day, all hell breaks loose because he thinks that means 'next'. But yeah, managing expectations I find is one of the biggest things for us, we can change the routine if we find a way to manage the expectation. Just shout out if you want to catch up at any point, I've been waiting for you to have a baby LOL so haven't been in touch.
Meow - sorry to LOL, but I can identify with hearing the same phrase all day long. We've listened to/watched The. Same. Two. Wiggles. Songs. (said through gritted teeth) all day today. Euan got up at 5:30 this morning, we woke to the sound of him putting the wiggles DVD in the DVD player. So when I say all day, I mean all day. We put a new lock on the cabinet so he can't access the DVD player without our assistance.
Twinkle - welcome. Have you checked out the SPD bloggers network? You might find it helpful, there's some pretty clued up writers in there, all speaking from their own experience.
Hi to everyone else. Sorry I haven't read over much more than this page. We're doing good, Euan is making huge progress at EI. He's been toileting (wees only, but he's now waiting for a nappy to have a poo, which is progress in itself), and is wearing undies at EI with no accidents. At home we're using training pants, because with carpets, beds and a commando crawling, breastfeeding to sleep baby I am waiting for him to get a bit more reliable before we go the undies road. His speech has come on heaps, although his most complex speech is still mostly echolalic he is responding to questions that are more complex than ever before. And he's a lot more balanced, although we still have days/weeks where he goes through meltdowns, but nothing compared to before.
Our big thing at the moment is we are probably going to trial gluten free. We've cut pasta from his diet, and we've noticed an improvement in both behaviour and the 'quality' of his poo (we used to get pretty horrendous poo). A couple of nights of pasta and it's really obvious, although he still has bread and muesli, so a reasonable amount of gluten in the diet, even cutting some has an effect. So we're looking into the full gluten free thingi, I'll admit I'm finding it a little daunting but in a way exciting. We'll go gluten free at home, although there might be a few things that DP and I have that Euan doesn't eat now, all bread/pasta etc will be gluten free. We're not going to consider casein free at this point, because I don't know that I could maintain a balanced diet with what E will and won't eat.
Christy, are you guys gluten free, or just dairy? Anyone else here doing the gluten free thing?
We've done gluten free. It was actually fairly easy in comparison to what I thought it would be. It's such a common intolerance these days there are lots of substitute options. What I did find was that a lot of gluten free manufactured products other than the basics ruin any benefit by being very high in sugar, so that's something to watch out for. In the end we found it was actually yeast that was our problem. Gluten intolerance was a symptom of yeast intolerance, because yeast rips tiny holes in the gut allowing the gluten heroin-like peptides to get into the bloodstream. By dealing with the yeast issue, we've been able to slowly bring back in gluten as long as it is not wheat based, so oats etc. are okay. We've left off the wheat because it feeds yeast only like cane sugar can. We also started doing some biomedical therapy, which included a zinc supplement, Fermplus which is a heavy duty probiotic (much better than inner health plus - they're not that good, just easier to get a hold of), a cup of homemade yogurt a day, giving her a glass of Keifer water a day and putting 1/2 cup of Epsom salts in her bath. We've seen huge improvements with this. We've gone from the hitting, biting, off her head meltdowns to a meltdown now being a grrr look on her face, the stamping of feet and sometimes when she's really losing it the F-word. We've heard this word a lot more lately because of issues with school, but she snaps out of it pretty quickly and apologises without needing a cue. Not all of it of course is from the biomedical therapy and diet changes alone, but they have played a very big part. I can absolutely tell when someone like her aunt hasn't thought about it much and given her a donut - lots of F-words.
E is currently on a GFCF diet. His diet is really limited though. I think his behaviour has improved without gluten (more attempts at speech) but I'm not 100% sure. We're trying to reintroduce gluten at the moment (if we can get him to eat anything new) and I'll watch his behaviour. We're aiming to do the coeliac blood test if he eats gluten for 2-3 months but I really don't think he's coeliac, and if he has issues with gluten it will be from something else that can't be as easily tested. I also want to start seeing some autistic savvy natropaths etc to help guide these explorations in diet and detox. As for dairy that seems to do shocking things to his poo so that's why we've cut for the moment. I've been reading some interesting research in gluten free, dairy free, low GI diet success... adding links to my blog as I find them.
He just had a blood test and stool sample this morning so hopefully we'll find some answers to his terrible poos and also see where is health is at with limited diet.
We had Matilda allergy tested when she was 3 years old, and had some IgG and IgE intolerance testing done as well. She showed an allergy to milk, and high levels of intolerance to oats, bananas and almonds. 4 weeks after taking those things out of her diet, and she started improving with her speech. It was uncanny. Her poos went from 6-8 runny ones per day to one formed poo per day. She also started gaining weight. We also started her on Udos oils and probiotics at that time. I spent so much money on vitamens and green replacers only to have her reject them that I only did the oil and probiotics as well as the detoxifying baths.
everyone.
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