I don't know what that test is, but have you seen an OT yet? Sorry if you have... too tired to remmember.
I've got a list of assessments that need doing, but I'm exhausted right now. Next week I'll organise.
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I guess I should pop in and give you all an update.
R had his Stanford Binet testing last tuesday. We got the report this week. I didnt realise exactly what the testing was looking for but now that I do I feel we wasted our time. Basically its to measure learning ability. The outcome was that he has high average intelligence; so he isnt learning delayed (we already knew that). The assessor said she didnt feel ASD was on the cards as a reason why he is what he is because a) he meets your gaze, b) he understands humour and c) he has no learning difficulty. So from what I gather ASD kids are antisocial and stupid with no sense of humour (Im still trying to figure out how that works for EVERY kid with ASD?). She did query looking into SPD, APD and ADHD (which are things we already have on our possibility list).
So $400 later we're still at square one. Our speechie convinced me to try one more paediatrician to see if we can get a preliminary diagnosis of something and go from there. Im getting tired of caring now, and running back and forth between different paed's and psych's and the like throwing money we dont have at them to be told what he ISNT, instead of what he IS.
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I've got a list of assessments that need doing, but I'm exhausted right now. Next week I'll organise.
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freya, thats disappointing.
We were told by one paediatrician after being in his office for 5 minutes that M was not ASD because, she looked her dad in his eyes and engaged in play.
UmmmmWT? He totally wrote us off and told us it was due to bad parenting... seriously...
Matilda loves jokes of one nature, she doesn't get others... the ones that are more sarcastic and illogical she doesn't get, very black and white on "some" jokes, but she loves telling jokes to other kids, and she socialises well at school. I mean she builds cubbies wiht other kids and plays games fine, just no imaginative play for her. But she does cope with that anyway... She has no learning disabilities. She is going grade 2 maths in grade 1, and is reading at the same level as everyone else.
So really, she wouldn't be ASD if going by that evaluation Freya...
clover - the list is daunting isn't it? I suggest going by what if affecting everyday life the most? Is it the SPD symptoms? Go to OT first.... etc etc.... our were SPD symptoms and we started there and started getting awesome results before we got through waiting lists.
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Thats what I thought Christy, esp considering ASD is a SPECTRUM. Meaning not every kid ticks every classical autism symptom box. I even said to her if anything Id lean more toward Aspergers but she said no because he has a sense of humour. However, his sense of humour is tricky. He will say to Dh or I "Oh your funny!" even when we arent being funny; he takes sarcastic funny literally, so we have to be careful what we say to him and make it clear we are just joking (we say that alot at our house, 'Just joking!' after a joke or something). She even went as far as to say freaking out when separated from a parent is a sign of ASD so because he didnt freak when I left he doesnt have it. I told her at the start of the session that he has absolutely no concept of personal space, is very physical and has no instinctual stranger danger, he will talk to anyone anywhere - it borders on completely inappropriate and rude sometimes with the way in which he does it or things that he asks. Its almost a compulsion for him that if someone looks at him or stands next to him he has to touch them or speak to them. From what Ive read, that could easily fall into the aspergers category. He definately does not have any social awareness of appropriate vs inappropriate. Yet when it comes to playing with other kids he prefers to be by himself, he only ever plays with his two girlfriends at daycare, even after years of being there. His brothers are the only kids he plays with voluntarily but never for long. He has great imaginative play when he is on his own. Can play for hours alone in a corner. Put him with someone else and it all goes downhill pretty quickly and he either meltsdown because they touch 'his stuff' or he just wanders off and ignores their advances to play with him.
A few things that stood our for me in her report was that the test registered that R's 'ability to verbalise reasons and consequences is far beyond his age' (apparently he has above average fluid reasoning - solving problems using deductive or inductive reasoning -for his age). So why then does he have zero awareness or care for dangerous situations ie sticking his finger in a moving fan or running onto the road infront of cars. He has no care for consequences which we always thought was because he didnt understand them but apparently he does and just chooses not to prescribe to them - for him anyway, he's good at telling everyone else off though which means he understand rules applied to others. She also brought up that he is more of a verbal learner than a non-verbal learner; he most definately doesnt understand physical cues/boundaries. He gets lost in distractions and has poor concentration.
I told her he always works well one on one, but when he is in a group situation; even just by being in a waiting room or at the shops or at home with his brothers he is insane and beyond difficult to handle. Unfortunately life is one long fugging group activity and he needs to learn how to cope with that. I cant spend the next 15 years until he can legally leave home spending everyday forcing him to do things he should just do - getting ready to leave the house, eating breakfast, getting his nappy changed, getting dressed, packing up toys, putting his seatbelt on, doing his speech exercises, going to sleep, staying asleep.....................every single thing I do every single fugging day with him is a nightmare. Nothing is ever simple. Its getting worse instead of better as he gets older. I know he is only 3 but seriously, this is beyond 3yo stubborness.
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Just a quick one for me, have you guys had any experience with weighted things?
We have an appointment on Friday with skillbuilders (if you google the name they have a website they sell therapy toys etc) to look at getting DS1 a weighted vest, weighted blanket, weighted belt, weighted lap bag and a few other things.
We've tried to get him to wear a vest before but Brendan wouldn't take to it, so I'm hoping that by him having a choice of colour and be part of the decision process he might take to having his own.
Anyone got any experience to share?
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Hi, quick check in from me. Our boys sound very similar freya and I totally think e asd. How frustrating for you!
We've survived the move and slowly settling in. Saw a pediatrician from autisim website and he was lovely and ignored e so wouldn't upset him (he was having MAJOR meltdown about being at the doctors. We have speech booked, on 2 to 4 month waiting list with ot, on 6 to 9 month waiting list hosp for asd evaluation, and booked in at gi clinic for gut/bowel testing. E is living on about 3 foods now that we can't get some of thethings he ate in aus. Frustrating.
I've been reading "more than words" and feel heaps more positive. Great book! Any one read it?e is talking a bit more each day which is exciting.
I think he has some anxiety so we probably need to add child psych to the list? My H and I had to hold him down to chop some of his hair. It looks terrible but it was SO traumatic I can't go back. He's getting worse with hair washing too. I held him in the bath while my H did it the other day. Really awful.
No experience with weights sorry. We're still waiting to actually DO anything.
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ARGH we are having such a rough time atm....
Weighted things, we love our weighted things in our house!!! I made a giant wheat bag and put a head, arms and legs on it and she had a "cuddle friend". I used 1.5kg wheat and added some stuffed animal stuffing in it. It was summer and she wouldn't use a blanket at night, so I made this to drape over her abdomen. I also have a weighted snake from sensorytools that drapes over her shoulders as she wouldn't wear the vest. She loves it, we also have a weighted turtle to pop on her lap at school or at night in front of the telly.
If M won't sleep at night, I will often lay on her legs and she falls straight to sleep. Its all part of the sensory processing disorder which is common amongst ASD kiddos. When she is trying to rest, she feels as though she is floating and dizzy which then makes it impossible to lay still... the weight gives them grounding and its awesome.
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I've never heard of that Christy? Sounds like something I should try... Where do you buy the weighted things from?
I was reminded to give c'link a call the other day for forms, so am waiting for them in the mail for the gp on Tuesday.
Rang for Visual testing & thats booked for April 15. Speech can't give me a date (sp probably 3ish months), Hearing also nothing right now. Her DH has just passed away & they don't know when she'll be back at work, should still be able to get done in the next few weeks though. & Speechy told me that OT usually takes around 6 months
If I can get approval for payments from c'link, I will try doing some of it privately.
Bri's been really, really frusterating the past week or so. Needing noise constantly. I'm not a fan of noise. I like the quiet.
BellyBelly Member
You can make them if you want Clover. It's all about how deep pressure provides calm. Or you can google them. There's one place in Australia that does it online from what I remember.
Anyway... I don't know why this is the first time I've posted in this thread. I think I've deliberately stayed away - I know it's meant to be all supportive and stuff but I find it a bit depressing sometimes, or perhaps it makes it more real *sigh*. I've really come to understand how much other people don't understand ASD kids, particular professionals who I would think should spend more time thinking about it as it can determine their effectiveness.
I had a meeting yesterday with DD's school about her behavioural ticks that have started to show up. I get the "but she's not like that here" implied aka "it's not us, it must be something going on at home", despite these things only happening on school days, not weekends. I tried to explain how she's "on" at school, and uses up all her tank of self-control and keeping it together, so that by the time she gets home the tank is empty and she's in her "safe" place and then just lets go. They, of course, just didn't get it. They also pointed out how calmly she was playing with the blocks while we were talking. She was stacking them of course, which I pointed out, and they're like... "so... and your point is?" Gah! All they could see was that she was calm therefore was able to sit there stacking, not that she was calm because she was stacking. I then have to point out that that means we should be asking why does she feel the need to stack, an activity that is recognised as a tool ASD kids use to calm themselves? It's because she is anxious, otherwise I know she would play with them differently. I don't know what is worse sometimes, the meltdown where everyone can see they're not coping, or the huge increase in calm repetitiveness that indicates an underlying turmoil? One of course is more "socially acceptable" because it doesn't effect anyone else but the kid that is autistic (and their family), which is quite ironic, seeing egocentric theory of mind is meant to be a characteristic of autism itself and it's what everyone else is pushing iykwim.
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Dilated Pupils
Hi girls, sorry for the selfish post, but I've noticed my DD most of the time has quite large pupils. Does anyone elses child have this? I'm wondering if it could be linked to ASD?
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Freya- OTs are awesome and can diagnose the SPD and give you an idea if they suspect ASD as well. My OT is fantastic and specialises in SPD and ASD kids so really understands them.
Riley is having trouble at preschool, I still don't think they fully understand his SPD and keep trying to tell me its aspergers (honey I paid $425 for an ASD specialising psychologist and he said it wasn't so I think we can rule it out) He plays well for a while then something sets him off and he pushes another child or hits, I am constantly reinforcing to him "hands down, no hitting, hands to yourself" but obviously to no avail. Yesterday the preschool said he had a great day, he usually is worse on Fridays cause he is more tired. I said that was cause I was off sick and he got to sleep in more- feeling great now, obviously if I didn't work full time he'd be better
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mrsmac, I hear you.... M is always worse when I work more... when I work more than 4 days a week. It doesn't necessarily have to do with me being home, but more that I'm not thinking about other stuff and have my mind preoccupied. Does that make sense?
We are still looking for somewhere to live atm. We have until May to get out of our house, but I started looking 3 weeks ago. So far we've been rejected from 10 places. Its demoralising and M isn't coping. She knows now that we have to move, and this week screamed for 2 hours because she wanted somewhere with stairs....
urgh.....
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Well our appointment went really well. I highly recommend skillbuilders to everyone, they have such a great range. If you can get in there, even better! We sat down and looked through all the different things and tried to try a few things on. In the end we decided that DS1 would probably take better to them in his own environment so we ordered them anyway.
On order we have...
a weighted vest, a weighted blanket, a weighted neck wrap, a scooter board, a weighted lap bag and a ball (can't think of the name, but it has little handles and you bounce around on it)
We bought home with us...
a body sox, a bilibo, a weighted belt, a vibrating mouth toy, a cushion for sitting at the table and a box of fidget toys.
I can't wait to get all the weighted things! He's been wearing the weighted belt most of the morning (on and off) and it's amazing! he body sox is just awesome too. He used the vibrating mouth toy last night and slept for about 7 hours!!!!! WOOHOOO.
DS1's OT diagnosed the SPD, the only 'sense' that is working correctly is his visual sense, which is kinda funny because he has a (very) small issue with his sight (just being monitored atm, can't remember if he's long or short sighted lol - I know bad that I can't remember, but it's really not important atm I'll let the ophthalmologist worry about it)
Mama Spice, DS1 has dilated pupils too, I thought it was just him lol.
Meow, good to hear from you, I hope things settle in well for you. DS1 hates baths and haircuts too
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Well we lasted until lunch time until a meltdown started! Usually we get one soon after breakkie (by 8am). He's been wearing the miracle belt most of the morning and has been in and out of his body sox. I think we are on to something!
BellyBelly Member
Yay!
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Awesome
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I can't wait to get the rest of the stuff now, I really do hope this is a sign of things to come. We've had such a good day, probably close to one of the best for quite a few months.
I'll need to get some more fiddly toys to do a rotation of them, I don't want him getting bored with them lol.
I also noticed that his quirks were a bit more pronounced today or maybe I just noticed them more because he wasn't in meltdown mode as often? Lots of hand flapping and continuous odd facial movements. Not concerned about them, was just an observation.
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Sally I noticed that after M started OT, that when she wasn't in "meltdown" constantly that she was doing more "Autistic" things, like flapping and spinning etc etc .... it was weird to see it suddenly, but so much better than being in constand meltdown. In fact now, I notice her flapping prior to getting worked up and its how I know what to do as far as excercises in order to avoid a meltdown!
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