Aspergers/Autism/Sensory Integration Chatter #4

Gah need a vent & a cry & a slap up the back of the head!
Evan just had a massive melt down. We had gone for a walk, kids on scooters, evan on bike etc. We got a few streets down & turned back. the kids were not listening, going to far ahead, drifting out on the road etc. Evan LOST IT BIG TIME.
Threw the bike, screamed & carried on all the way back to the house. Get to the house & he was still going ape ****. Ripping at stuff throwing chairs around etc. I told him he had to go outside. He wouldn't just kept screaming at me. I totally lost it with him, handled it terribly, even smacked him :(. I put him outside & DH ended up going out there with him & basically watched him while he screamed & yelled how he doesn't care about anything, tried his hardest to break anything he could get his hands on etc. All the while I was inside just fuming & telling DH to stop being an audience for him, he is just playing it up because you are watching. They eventually come inside (after about 20 minutes) & Evan is still carrying on. He started screeching in Iains face & pushing at things with is feet (chairs, a couple of stripy bags I have linen in against the wall) trying to push them over etc. I told Simon he needed to take him out of the house before I smack him, I will not tolerate him screaming at the little ones like that (DH was trying to ignore him & was sitting on the computer about a meter from him, I was in the kitchen trying to get dinner sorted). DH needed up taking him into the bathroom & eventually got him to have a shower (Evan is refusing to have baths/showers lately)
Evan eventually calmed down till it was time to come out when he started again but not to the same extent. He is now sitting eating dinner watching TV.

DH went off at me a bit about how I handled it. He said I need to remember its in illness not something he is doing on purpose but I can't help but feel that when he starts that he is playing on it to some extent. Dh said he thinks its like a fit. Which deep down, I know he isn't playing it up. I am just trying to justify my own bad behaviour really. I am ashamed of myself for handling it so badly. I did nothing to help, I just made it worse.

I don't know what to do.

Today we went to the shops, had a play in the playground there & then went & had lunch at the RSL club where there is also an indoor play thing. BUT we have been into the shops the last 2 or 3 days in a row. Where he has acted up more & more each time. But he was "ok" today in comparison but then this hours later...

Can I go to a OT off my own back or do I need to be referred? He obviously has sensory issues & I am doing NOTHING at all to help him when he hits overload. I feel awful, lost & like I need a good punch int eh face for being such a terrible mum :(

FJ, I don't know if you remember me. I used to be Rayla72 and I'm a friend of Trish's (Tehya's mum).

Don't be too hard on yourself. It's incredibly hard being consistently patient with special needs kids, not to mention the fact that you're so heavily pregnant and all the stress that brings. I've lost it with my 9yo autistic daughter too so I get the guilt, but it's important to just wipe the slate clean and keep on truckin'. Tomorrow's another day.

Firstly, :hug: you are NOT a terrible mum! We all have days like that. Also, you're only starting out on your journey to find the tools and understand the uniqueness of your son's condition, and at first there is a lot of hit and miss. What works one day might not work another, and unfortunately it takes time and experience to build your arsenal of tricks. It sounds like it is definitely over-stimulation from being at the shops. Outside didn't work this time, it's a better tool for when they are reacting to a lack of stimulus. Perhaps if it happens again, can you try to get your DH to do deep pressure (squishing him between two pillows) making a game out of it. Deep pressure is meant to be calming it might work better at times like that. Even a bear hug could help a lot. What you DH says about a fit is actually how I would describe it too. My DD used to fit for real and she has a very distinctive cry that she only makes after having one, and also after she has calmed down on the occasions when she has gone so off the handle that I've had to restrain her during some meltdowns.

You can go see a private OT, no you don't need a referral but it helps. Also, does you community allied health organisation run a drop in clinic?

There is another tool to help identify sensory triggers so you know whether to add or remove stimulation, I'll see if I can find it.

Here it is. It's a troubleshooting acronym from Sensational Kids by Lucy Jane Miller:

A SECRET

Attention: Is there a way I can draw my child's attention away from his anxiety?
Sensation: Is there a sensation that is alarming my child right now? If so, what is it, and can it be modified? Can I use another sensation to override the alarming one?
Emotion: What emotion is my child experiencing, and what techniques do I know that work best when he feels this way?
Culture: What part of our family culture (like shopping) can be changed to avoid situations like this in the future? Can I do these things without my child, or can we amend them to be on a smaller scale?
Relationships: Is there something in his relationship with me or someone else right now that's causing him to act this way? What can I do about it?
Environment: What in the environment is setting my child off? How can I change it?
Task: What is troubling my child about the task at hand? How can the task be modified so that it is not so problematic for my child? Is there another task I can substitute now that will provide a calming influence?

I don't know if it will help (we've found it good) but better to have it and not need it. Hopefully it will be empowering. :hug:

Im not sure of pressure would help. There was one time he had a melt down like this one, which was triggered by Glenn removing arrows Evan had placed around the house for Santa to find the basket with a letter he put out (in November mind you). Evan responded by punching Glenn in the stomach. To which he was sent to his room. Where he lost it completely. DH was in bed, I had to get him to get up & help me. He tried to calm Evan while I calmed Glenn (he really hurt him) & in that instance the roles where reversed DH was handling it badly so I went in & asked him to go out & I tried to help Evan. I put him on my lap so he was straddling my knees & just tried to hold him close. He fought with such might. But It was all I could think of to do, he was going to hurt himself. He ended up biting me on the arm which left a bruise the size of a mans fist. He also ripped at my ear rings, my hair etc etc.
Once that part of it was over he was extremely hyperactive, obsessing over checking that all his arrows where still where he put them etc.
When he is this way he reacts badly to being touched (so smacking him was the worst thing, mind you this time round he was so caught up in screaming & yelling I don't think he really noticed). But yeah if I was to try & take him by the hand/arm, direct him by placing a hand on his back & "push" him etc he spits venom almost! This is where its hard. He doesn't want to be touched, looked at, spoken too etc.

I did have a little chat with Evan just before. Told him that I love him & that I just get so cranky & even scared when he behaves that way. But im not really cranky at him, Im cranky at myself because I don't know how to help him. He said he was sorry also & that it would have been ok if we had just kept going to the park (he thought thats where we were going on the walk).
Its strange how he focus on what he thinks is the problem. But its not. It wasn't that we said No to the park. It was no more walk someone is going to get hit by a car!
Or earlier today, he got into trouble after I had already said not to use the skipping rope the way he was, he was threading it down from the top bunk between the wall & teh bed & the pulling things back up that Glenn had tied to the bottom. BUT yanking it up against the wall. Which I explained was going to damage the walls. But then later they were doing it again & he got himself caught in it trying to get down off the bed & freaked out thinking he was choking. BUT not seeing I was cranky at doing what I had already asked them not too, he got caught up in Blaming Isla for holding on to it & he was choking. He wasn't choking by the way. He had it stuck around his elbow & it was across his chin.

Eta- thanks Yeddi. I will try & remember that. This time round I have no idea! LOL This is going to be so hard with 5 kids.

Wow what a huge day. Obviously he had issues coping with a "change" in plans (at least in his eyes).

Often I find that M has more issues the more sensory situations she's been in. If I were to take her to Woollies, you can be guaranteed that we would have a meltdown later in the day due to things going not according to her plan. If I took her to an indoor play centre... we'd last around 20 minutes before her anxieties increased enough to have to carry her out. She doesn't cope during school holidays with any enclosed activities, so shops are out, the local hotel which has a playground is out, indoor playcentres are out... we just can't do it. At first I hated it, I felt punished, but now... now I'm relieved that I know what triggers her and can avoid it. Both of us are happier due to the decrease in meltdowns.

IN those situations is M happy to be there though? To begin with? See Evan likes going to play centers & things like that. He can get very silly but its not his anxiety that comes out. Like yesterday, this one place at the RSL has playstations set up. I had to keep telling him to leave them as he was trying to work out how to turn them all on, getting behind the TV etc. Knows no boundaries.
With going for a walk yesterday. We said at the start we are not going to the park. He said OK. BUT then we walked in that direction. So I guess thats where things went wrong.
He wet the bed last night, which I was expecting. He always does after a carry on like that.

How am I going to avoid situations that trigger when I have 4 other kids.

Perhaps you need a way of Evan being able to remove stimulation when he becomes overwhelmed? A certain book or toy or something he likes that he can absorb himself in and ignore everything else? Not sure, but at home you could perhaps try a "time away" teepee (or just basic tent sort of thing made from a sheet) that he can go inside to sort of shut down for a little while. Headphones to block out sound? There might be some more info out there on sensory avoidant behaviour that could help.

My son is sensory seeking so cuddles work really well for him. He still becomes over loaded when out and about so I guess it's the type of sensory stimulation that is the issue? He's really sensory seeking lately- wants his dummy and cuddles all day. I'm going to have to look into some sensory stuff like a weighed vest and the mouth toys I think. We have a vibrating toy that he hates and he doesn't much like other teething toys, only the dummy so I'm not really sure TBH.

The blog is racing along. I still have a million things to write. I think I'm overwhelming myself at the moment with my desperation to "fix" him. Is this a stage of denial do you think? I'm paranoid my second son has sensory issues now too and I feel a like distancing myself a bit. I just don't feel like I can do this. :(

Oh, and I am SICK TO DEATH of hearing the SAME fricking phrases ALL day. I feel like screaming at the moment. Just say something normal!!!

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.

Haven't popped in in ages - :hello: everyone.

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.

On my phone so will come back and do personals later.

Just a poor me post really. I've had a pretty bad few days. Kids usually have one day a week at fdc but our wonderful carer is on maternity leave, dh had a bucks weekend this weekend and I'm just exhausted. Ds has been really difficult, change in routine maybe? Not getting time with dad? Don't know.
He's got this thing going on with doona covers, he wants to spend all day hiding inside one with me, I don't care if dd is having a nap or something but I can't exactly do it all day. He keeps having meltdowns over it. I've made him a little cubbyhole out if a portacot, pillows and blankets. It's keeping him happy for now but I know it's going turn into a massive showdown cos dd wants to play peekaboo and get in with him. He's refusing to eat anything but rafferties garden apple, pear and mango. He's yelling a dd and myself all day. I'm so tired. I just want some peace.
Wednesday we are meant to be getting our first diagnosis and I know what shed going to say. She's only seen him twice for an hour each time and he was at his best both times. I think she just thinks I'm not being a good parent.


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:hug: Weeks like that are very emotionally tiring. Do you have a video camera or does your still camera have video option? Perhaps you could record some of the behaviour to show as "evidence". It really annoys me when professionals have to make a diagnosis based on an hour of time, and usually the kids know to be "on" and behave their best just to complicate things. Video though, is hard to deny. I know they weren't sure with my DD either until I showed them a video of her melting down and lining things up. They suddenly went from unsure to "oh yeah, that's SO autistic!"

I did something horrible when it was time for M's ADOS assessment... I gave her 100mls of organic apple juice. From doing elimination diets and detoxing and things like that, we found that apple juice.... no matter if I made it at home or bought the more preserved juice out there, but any apple juice took her back a few steps... she wouldn't be able to communicate very well, and was 100 times more likely to have a meltdown.

Now, I knew from experience that it exacerbated her behavior, or exaggerated it I guess... so I thought I would do it...

I felt bad afterwards, I mean like I was making things out worse than they were, but I guess I'm glad I did because we had some awful times after the diagnosis without apple juice.

I stopped doing the things that helped DS1 cope a few days before the assessment, that way on assessment day he was him. He didn't have a huge meltdown, but did have a series of minor ones, he also displayed a heap of the traits too. Our assessment was over about 4 hours, DS1 was not compliant and was difficult to engage.

Need some help (sorry for no personals) DS1 loves to smell things, no biggie.... except that he likes to smell bums. He pulls down pants and puts his face right in to peoples bums and also spreads cheeks to smell too. How can I stop that? It's really embarrassing, he's done it a few times to me in the supermarket etc!

First, I would write a social story about how that wasn't appropriate and that people wont like it. Then I would offer an on-tap alternative. My DD keeps a strawberry chapstick in her pocket that she can get out and sniff when she wants a fix, but your DS might need something a little stronger. Perhaps a tea tree oil one from the health food shop??? Linseed or star anise have very strong smells too, perhaps you could make up a water spray infused with those (like the little ones you can get to travel) that he can spray to get the smell.

Ec- ds also smells everything, he has tried to smell my bum a few times. He's been right into my wheat pack and without even really thinking about the asd side of things I put some wheat in a sock with lavender oil and tied it up with a hair tie. It's quite strong smelling but he loves it. He's been rubbing it in his face all day and even took it to bed. He prefers it warmed up, double whammy for the sensors I guess. Maybe something like that?


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We dont have a sniffing issue, we have a tasting issue. Ripley has a bad habit of biting people's clothes. He's been doing it mostly to DH lately, esp if we are out and about somewhere. We dont even notice he is doing it, just all of a sudden Dh feels his face bump up against his back and then look down, there Rip is with a mouthful of tshirt. Bit weird but kinda of funny in a silly way lol

We finally got our diagnosis report and letter so now I have two lots of paperwork to post off: #1 is the Autism Advisor Program stuff and #2 is the Carers Allowance medical report to the Paed. Hopefully we can get some sort of money happening by 2nd May as thats our OT assessment ($200, ouch). I probably should get onto the military about special needs recognition; we are desperate for Rip to have his own room as he is hard to settle sharing with his brothers and frequently night wakes which disturbs the others. It will give us leeway for automatic 4 bedroom classification which will be a huge load off my shoulders (esp because Ds1 goes to primary school next year and does not need to be sharing with his 2yo brother!)

Freya, that would be awesome, I think getting that stuff all started is a great way of getting help for you guys. The carers allowence is actually good to get and you get back paid to the diagnosis. You should get a health care card for him as well, that way you can get reduced rates on somethings.

Thanks for the suggestions will have to try some of those. A social story is a good idea too... we have one of those about the wind (he's terrified of the wind because we lost our roof in the last storm). We have the tasting/biting issue too but we have a huge range of toys he is allowed to bite/chew and also ice, he LOVES ice :D

Freya, that would be awesome! RE Carers allowance, I got back paid quite a few months (2 months prior to the assessment!). I rang up to make sure it was right LOL.

Morning everyone,

Sam was up at 4:30 again this morning, that's everyday the past week! How do all your kids sleep?

Sam has never slept past 6am, even if he doesn't go to sleep until 10. I'm dreading today as I know he's going to be worse because he's tired.

Appointment is at 2pm, not looking forward to it. But, I'm going to try and get some video of him to show her. Wish me luck.


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Good luck Loulabelle! I think some video is a great idea. Remember, being worse is a good thing at the moment.

Our son was a shocking sleeper, woke every 2 hours for the first 14 months then slowly went longer stretches till sleeping through at about 19 months. But since then he always sleeps unless he's sick so we're very lucky. He will wake up early regardless of a late night though too.

I'm off to meet some ASD mums and kids on Thursday! Looking forward to getting out and meeting some new people, and not being stressed about how E reacts. He's terrible going into new places.

I was thinking if trying one of the playconnect playground for asd kids, but I feel weird because he's not officially diagnosed yet even though they say it doesn't matter. Let is know how you go.


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I was just telling my H I feel the same way with not having a diagnosis. But we both need the socialisation and I don't have the confidence to deal with screaming mess on the ground for a first meeting with a regular playgroup at the moment. It was okay when we did that at home with old friends but it's harder with new people.

DS1 is a shocking sleeper, but he is getting better. 1/2 the week (on a good week) he sleeps through from about 8-6.

How do I explain there's no Kindy today? School holidays have started and I'm not sure how to prepare him or anything... thanks x

Early Kids school holidays are hard. We have done the social story and doing something special in order to compensate... like a scavenger hunt or something outside together... when they are young they don't always understand why there is such a thing as school holidays. M doesn't understand why people want to take breaks from school...

Sorry I haven't been in....

Busy couple of days... really should update my ticker LOL..

Ahh so Mr #5 arrived on Monday. Everyone has a lot of processing to do. Surprisingly though, its Glenn who is most concerning. He is complaining of feeling unwell but isn't IFYKWIM. Seems with drawn & just before was hiding under his bed because he didn't want to see the midwife who came to check on the baby. that is really weird for him. DH has taken him out for a bit just on his own. Poor kid.
Dh is dealing with his emotions ok. A good nights sleep seems to have helped him a lot.
Evan was pretty "on egg shells" for a couple of days there. Seems mostly ok today but still a bit touchy. He is like DH, handles the immediate situation ok, great even. But then crumbles after the event has passed.
But Yeah poor Glenn.. Its so hard with him as he hides it well & goes un-noticed. I will have to try & include him a little more. I keep saying no to them holding the baby & stuff. Glenn has had a hold etc. but he looses interest pretty fast. But I try to make a deal about how the baby will be like him. They both have red hair so I have been saying how he will be like him etc. hmmmmmm

Congratulations fj!!will come back soon to write more...

Just had our feedback appointment. She says at this stage she's not thinking autism because he can make eye contact (although he finds hard if he doesn't know you) and can engage in conversation. He has quite strong sensory issues, speech problems and is developmentally delayed( not cognitive but, emotional, behavioral, self care etc).
She's put him through to an early intervention program, ot and speech pathologist. That's good right??
I'm totally confused, I don't know where he fits? If these things are part of a bigger problem or if they are three separate problems. Will get the report in a few weeks, although I don't know how much clearer that will be.


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ahhh there is the breaking moment for Evan... he just exploded at Isla & hit her over the hand with one of those sticky slappy hand things. Its made out of soft rubber stuff, you know those things you slap at the wall? It BRUISED her fingers he hit her that hard with it. Why....because she was annoying him... I just ignored him & seen to Isla. He went & sat on his bed before I even got up the hallway to see what she was screaming about. When I asked him what he did he just screamed & yelled that she was annoying him. I just walked away.

FJ wow that would be hard.... maybe get some social stories about newborns in the house? Try googling newborn ASD social stories. It may give another way of explanation for them which they would understand?

Laura - maybe a PDD-NOS diagnosis? I dunno.... but if you can get access to early intervention, take it. Seriously.... even if in the end its Sensory Integretion (and there are major changes in the cogs for SI and getting early intervention) than you need help no matter what... early intervention can help so much.

Going to ring the early intervention program today, hopefully the waiting list isn't too long.

In your experience what has worked best, group early int, in your home or one on one at the centre? I'm thinking group might be good for him but also worry it will push him too much because he's not good in group settings. I guess that's the point though.

One thing that's been getting to me is she discounted seeing him lining up the cars in her assessment as as something lots of kids do. True maybe, but he lines up all his toys.


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Huge congratulations efjay!!!!

I'm glad you have some access to early ed Loulabelle... and hopefully more luck nutting out the diagnosis as time goes on. I read in my book that lining up toys can be a sign of being undersensitive to visual stimulation, placing it as a sensory issue rather than autism as such. So perhaps sensory integration is the issue? Good to hear there is progress happening there. I've been told here to make sure a doctor doesn't write down sensory processing disorder as a diagnosis as therapies then wont be covered by insurance as it's a not a confirmed condition yet. Damn word games- just help these children!

Just read an amazing story on TACA... think it's not a commercial site so a link is okay. Zach

Has anyone had any experience with cutting out salicytates? My son eats an insane amount of apples and they are high in salicytates which some sources may be an issue. I know your daughter can't drink apple juice Christy- can she eat apples? I'm so hesitant to do diet modification given that E already eats less than 10 foods and wont add anything new so cutting things out is pretty major. But I could possibly replace apples with pears, wondering if it's worth a shot.

You could be right meow, wish she was more clear with me.
She did say he is oversensitive with some sensory seeking, especially smell and movements like swinging and spinning. Thinking maybe of getting a second opinion just to be sure.


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Laura - I've never heard of lining up being an sensory thing. I know that lining up and things like stacking, basically the repetitive behaviours, are activities kids use to calm themselves because they're about order and control and predictability. Certainly not something that should have been discounted. Are you able to get a second opinion?

Fiona - First, congrats :D
My DD also struggled with a newborn in the house. She regressed quite a bit and would do things to try and hurt him. Sometimes I would think she was going in for a kiss and then she'd wrap her teeth around his ear Mike Tyson style. The biggest issue with babies and ASD kids is that babies are unpredictable and make lots of unexplained and loud noise. Social stories help a little bit, and it gets better once the baby gets a little older and can interact. Good luck!

Going to make some calls today to get a second opinion, shouldn't be too hard as our gp said initially she would be happy to do another referral. In the meantime, we'll try and get in to EI, ot and speech.
I think her theory was that it looked like he was parking the cars.

I understand how it been such a long and hard road for all of you, I never really appreciated it.

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Sorry, I didn't mean to dismiss the lining up as I actually agree it's a spectrum thing. This was from a book about ASD, it was just trying to explain WHY they may do it and the reason they gave was to provide more visual stimulation. I dunno though, 'cause my son lines things up that are similar. Generally, the night garden cgaracters get lined up together, animals together, cars together. Did your son "drive" the cars and park them? I think that woman is projecting too much if she suggests lining up is parking. Glad you're getting a second opinion.