He did have a DS but he lost it. It either fell out of the car at some point or it was stolen from the car when I had some work done on it. But we can't afford to replace it atm My main hurdle I think is finding that key to calming him down because he just explodes with no real warning & thats it. nothing is going to calm him. He would destroy a tent, pull the wires out of head phones etc. WHen he gets that way you just have to stand back & take away things he could break.
Meow, I am also paranoid that my other boys (im going to have FOUR!) will all have the same problems. Glenn does. Displays in other ways but its there. Iain I think he is just Iain but he has a few things that make me wonder & I will be keeping an eye on it. Loves things on his head, seeks out sensory things on his head. He is very particular/neat freak that sort of thing. But he is a happy little guy so I think what I see I am reading too much into.
But Then we have this little guy still in my belly. Who's pregnancy landed smack in the middle of what turned out to be the most stressful time in my life. Then I read that article suggesting that increases the risk of an ASD. So I kinda feel like I am doomed & will be run off my feet with 4 ASD kids. That will be fun!
This is my first time in here and to be honest I don't know where to begin. My oldest DD Miss 5 has been having some issues for about a year or two. To be honest I cannot really pinpoint when it begun. It started with the seat belt (h harness) being too tight, touching her belly. We had screaming, hysterical fights all the way into daycare(20 min drive). It was horrible. Then it started with clothing, socks needing lumpy bits cut out, tags on clothing cut off, nothing touching her belly, no form fitted clothing. Then it started with shoes. And another prob is when she started school this year daycare forgot to pick her up three days in a row in her second week of school. So then the anxiety started and things got really bad. I also have anxiety issues so my anxiety was through the roof too and resulted in me seeking help.
I have held off till now in getting her help, DP and I just put it down to normal 'growing up' issues. But we (well mainly me) have come to the conclusion that this is not the norm. Screaming hysterical fits in the car over very trivial things (well trivial to us) are not something that should be happening. I look at my daughter and she is a bright confident little girl. So how could this happen?? Sounds so odd I know, but honestly I never ever thought she had sensory issues till someone mentioned it to me. I don't want to have her 'diagnosed' I just want to work through the sensory issues and help her. I honestly don't know what to do.
We walked into a supermarket the other day and she flipped out. She is normally so good in there. She said her shirt was not perfect and it felt funny and was itching her. It was a cotton tshirt. She flipped out crying and flapping her arms about. I didn't know what to do and told her off. Which I feel incredibly bad for now. But I think in that moment I realised, ok its time to seek some help from an OT.
Half the battle though is that DP knows something is not quite right and she doesn't do this all the time with him, mainly me. And he thinks she doesn't need help. Clearly we do need help, even if its just how to react when she does do this IYKWIM? Telling her off is not good, its not helping her and it stresses me out.
Sorry for the long post....have needed to get that all out.
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.
My main hurdle I think is finding that key to calming him down because he just explodes with no real warning & thats it. nothing is going to calm him. He would destroy a tent, pull the wires out of head phones etc. WHen he gets that way you just have to stand back & take away things he could break.
everyone.
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