Sorry guys, its been so hard to come in here lately for me, I haven't felt right .
With Lu... My DD1 was diagnosed first, but she and Cyclone were 3 days apart and we started noticing the similarities in them from the time they were 6 months. DD1 is diagnosed with Autism only because her communication was lower... but other than that they are amazingly similar beings.
The thing with PDD-Nos, Asperger's or Autism is that it affects ALL the children differently, yes there is a check list, and yes its hard to figure out but all three are on the same spectrum. Think of it as a Rainbow... some are on the right side in the red, some are in the left in the purple, some are in the middle in yellow... but they are all on the same rainbow (this is how we explain it to our DD's). Matilda is in the yellow somewhere on the right hand side... she is considered high functioning autism but at the same place in the red would be Cyclone. Its all to do with IQ levels and communication abilities. DD1 refuses to communicate, she has a high IQ, medium social IQ but her communication abilities are quite low. She actually has a large vocabulary but is unable to put it together when the smallest amount of stress enters the picture. That is how she crossed the border from Asperger's to Autism. Does that make sense?
Personally, I won't worry too much about where on the spectrum they are, only that once you have a spectrum diagnosis, you can get started on getting help for them for survival in our world.
Over and over I've had people tell me that DD1 doesn't "look" Autistic. I can't believe that people think you should be able to see autism. Its not like she needs a walking frame, its that her brain processes things differently! I want to say back "oh thats funny, because I didn't think you looked ignorant?" instead I say "What does Autism look like to you?" If Matilda is around, I say "Yes well super heros like to hide their super powers in their day to day life".
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.
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.
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.
Ummmm WT? 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.
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.
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.
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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WT? He totally wrote us off and told us it was due to bad parenting... seriously...
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