-
I have had the BEST day!! I went to an inservice course run by Sue Larkey on Autism/ASD and sensory issues and it was inspiring and helpful and fantastic. She is an amazing speaker and I came home wanting to be her!! She started out as a teacher who had an autistic boy in her class and no extra help or training and has gone on from there to be an expert in ASD especially teaching.
Some of the great quotes I got from today were:
To know someone with autism is not to know autism. Everyone is different even those with ASD
Choose your battles
Without a label you will be mislabelled like badly behaved/rude/undisciplined .
I have written a couple of pages of notes and I have some handouts too. She has written a number of books which I am hoping the school will buy.
Anyway enough of my new girl crush LOL
-
I'm SO JEALOUS!!!!!
Isn't it amazing to hear someone so passionate - and what a fascinating subject.
I'm really annoyed I never became a teacher, because I'd love to be able to support kids in the school system...bit too late now dammit!
-
There were parents and teachers aides at this course too. It never too late Lu!!
-
Hey guys!!! Sorry I've been outta the loop, I've had heaps going on here at home, not all to do with Matilda though, more to do with family overseas.
I love those quotes Christine and the "Choose Battles" thing has been a motto in our house for the past 4 years, glad to hear its a good one ;)
I'm so exhausted all the time right now. I wish I had the energy to contribute more, but I will get back to myself sooner or later.
-
hi everyone..
I hope you all don't mind me joining in on this thread.
I have a 2 year old little man who has recently been diagnosed with Autism..
To what extent we are currently unaware... our next paed app is 10/12 :(
Hope to get to know you all well and learn lots of coping and dealing techniques :)
xoxo
-
welcome aboard the rollercoaster super mumma (im breaking down your name cause its just to darn long ;) )
my 2YO has just been diagnosed with aspies and my 8YO has autism. Both are driving me completely BARNY tonight.
the 8YO due to 2 girls at school teasing him and the 2YO cause he is sick and has a temp.
Im thinking of becoming an attraction at the zoo....cause the sounds coming out of my mouth atm are just to animal like...blllahhhhhhhhh
-
Thank god that the forums is back!!!!!
I thought I was losing it when I couldn't get into here - I actually thought it was just my laptop being a brat.
Hope you are all well and that your lil ones are behaving as well as they can :)
The new latest thing here is the highest pitch squeal/scream all day!
I have an earache and a major headache today
Tomorrow is our first appointment with OT (we saw one 12 months ago for his hypotonia - low muscle tone) this one evidently is a paed one which is great!
She said after our joint OT/Speechy/Physio app last fortnight that she feels he definately has some sort of sensory deficiency..
Time will tell
*here's a strong glass of whatever alcohol you need to get you thru til bedtime***
xoxo
Vicki
-
Hi ladies! Rather than remake the whole thread I had before I figured I can just jump on in here until we have a dx.
I think I am really having one of those breakdown moments though. Every tiny cute thing that bunny does, I am questioning it! We used to giggle that she was a complete fashionista. She only likes pink and white clothes, and whenever we go shopping, she adds another fuzzy soft faux fur piece of clothing to her wardrobe. Now I am wondering if it is a sensory thing. Its only soft subtle pinks - nothing bright and gaudy. And the fuzzy clothes are all so soft, but she loves them to pieces. For the record, she picks her own clothes. We hold it up and she either pushes it away or grabs it and puts it on her lap.
We went to the shopping centre in Lismore today, stopped for lunch, and she is sat in the food court with her hands over her ears. She is only a 5th percentile baby, so very small, and she is making milestones fine and does the cutest things. I feel like such a cow questioning all her actions now. =( Thinking its just the paranoia setting in.
Princess seems to be doing better. I had to speak to the DoE about Chilly the other day because the enrolment process was dragging on into the ridiculous (6 weeks!!!) and I needed someone to light a fire under their backsides. While we were on the phone we spoke at lengths about princess as well and the lady said while it is not ideal, we can use the botched IQ test to get immediate assistance pending her dx. She implied the mild intellectual disability result from the test can get us a bucket load of help and will be updated to ASD (if she is ASD) when the full raft of testing is finished.
So ladies... should I do it? Should I use this test that I know is a complete joke? I am concerned because I don't want to risk labeling princess as intellectually disabled if she isn't, iykwim... The idea of getting her immediate help is so appealing though. Ugh! Why do I always get stuck with the crappy decisions???
-
Bunny is little and doesn't like loud noise. End of story. She sounds exactly like my Betty Boo (fashionista plus!) who did the same thing at the same age. Maybe you could say she is ahead in the fashion-awareness milestone :lol:.
Actually I'm not little and have trouble with the noise and lighting at big shopping centres.
Whats the deal with Chillys enrolment???
Errmmm, just quietly...the lady is right. Princess will get lots more help if she is considered intellectually impaired and I learnt today that once you have the funding you have it for 5 years (although it may vary from state to state) - ALTHOUGH you might want to double check because language has to be affected now, when before an ASD dx got you funding straight away. I suppose this chick would probably know for sure though - it sounds like she does the funding applications yeah?
-
Yeah see. I tell ya, the paranoia is getting to me. One more school appointment and I think I am going to pack my uterus in a box and return it as faulty! *sigh* I hate this questioning everything. Hopefully it will calm down soon.
Chilly has been waiting to get a start date for school. Love the DoE, the school counselor called today and gave us one. Apparently they were changing counselors and didnt want to brief the old one on him and then only to change it a couple of weeks later. Guess I can understand that, but we were starting to get paranoid that we were going to get in some serious doodoo for him not being in school. Looks like he missed out on SPED placement though which is disappointing. He is on partial attendance in mainstream starting next tuesday.
The lady I spoke to at the DoE was the regional 'manager' itms. She gave me some numbers for organisations that can come out and do assessments on the level of assistance Princess will need, told me to give a copy of the results to the school (apparently the other school didnt!!! UGH) and they can move her into the first open SPED spot. She also mentioned they would be able to get an aide out to her asap pending the opening so I am guessing so! Well I will dig it out of the boxes tonight and get it to the school in the morning.
She has been referred for speech therapy in the past so would that help? We never made it to the top of the list before we moved out of the area (and we are talking over 12 months!!!) so I am not so sure.
-
YES! Speech therapy will help.
Are you aware your local school has an ironclad obligation to take Chilly? Right NOW? It's not your fault and you won't get into trouble but THEY certainly will. I'm a bit behind in any issues behind that though, I only remember reading something about poo bum bullies?
-
Yeah, he got into a fight with a couple of the little turds at school. They started it but because he won, he got into more trouble. *headdesk*
But, on the flip side, I would rather be having trouble getting him into school than having him battered. Blah.
-
Having a rough time at the moment. J basically will not eat dinner EVER. Every night he carries on and cries and it usually end in a tantrum. He claims that he does not like whatever I prepare. He eats fine at Childcare and if in the care of others without us. I just can't deal with it any more..been in tears since. J actually said sorry. He understands that he has upset me and wanted to make me happy. I hate that he had too see me upset. It has been 2.
years today since my cousin (raised like my sister) lost her little boy full term. So it has been a very emotional day.
I also feel like EI is not doing anything. They visited J at chilcare last week and I still have had no feedback on how that went. I feel judged as a parent. I feel like I have failed J. I feel like because i had post natal anxiety and depression with J that it is my fault. I feel like J is feeding off my anxiety. I am stressed at every meal time. I feel sick in certain social settings wondering if J will do something wrong.
Ok enough for tonight..
-
Oh honey, huge hugs to you. I know those feelings as do all of us on here.
I have learnt not to fight the dinner thing, sounds slack but it works for my stress levels, DS ate a bowl of cooked rice last night, 6 Mcnuggets and fries the night before- not going to win me any mother of the year awards but hey we were both still happy afterwards. I have also learnt to pick up on signs at social events and leave early if need be, I also pick my events- if I feel it will be too much for him or there are children there who I know will push his buttons until he snaps we don't go simple as that. Christy and I have had some awesome times together because we said with each other we just don't care what our kids do and lo and behold they were angels!!
Haven't got time to type more but will be back. The main thing to remember is :
THIS IS NOT YOUR FAULT!!
-
Hi again.
Is the dinner thing common? I am forever fighting my kids to eat theirs. Then they are 'starving' in the morning that they eat their breakfast at home, get to school and eat their whole lunchbox before the bell rings. I am about to serve them their last nights dinner for breakfast! LMAO
Lilima - I found that with Sam at least, if I put it on a bigger plate so it looks like less, he eats it all. Go figure!
AFM - The appointment is in FEBRUARY!!!! So much for getting them in sooner, aye. *sigh*
-
Have been meaning to update for a while...
DS has got a place in a 2 day a week program at Autism Qld which starts next week. We have been really fortunate with timing - he had his intake interview there a few weeks ago, and normally it takes quite a while before a suitable place becomes available. But there was a place in the IE program starting this term that has just come available because one of the kids was moving up into an older group, and there was no one on the waiting list ahead of DS, so we got it. Fantastic! The facilities there are fabulous, and from what we've met of the staff, they seem both knowledgeable and supportive. I've been chatting on and off with the facilities manager and she's been very giving with her time, so hopefully this will bode well for DS.
Slight bummer though - DS has been getting recurrent tonsillitis for the last couple of months, and has had to be on antibiotics for the last month - we got in to see the specialist on Monday and he'll be getting his adenoids and tonsils out in November (a few days before his birthday, poor kid). Because he's also been getting sleep apnoea and his sleep has been completely up the wall (he's up for several hours a night in the middle of the night), which has had a huge effect on his spectrum traits - he's much quicker to meltdown, his language skills suffer and he's generally not a happy camper, the specialist agreed that stopping the sleep apnoea is a real priority for him so that the intervention program will have the best possible effect.
Has anyone had experience with a young (under three) child on the spectrum going in for surgery? Fortunately either myself or DP will be able to be with him as he's being anaesthetised and when he wakes in recovery, as well as staying overnight with him, but it's going to be a hard sell explaining to him what is happening. His program providers have said they can help lay the groundwork for it, which is great, but does anyone else have any tips?
-
And just an add-on - lilima - please don't feel judged as a parent. You do the best for J each and every day - his condition is not your fault. And you have the right to have your own anxiety and stress - you're doing the best you can to deal with it, but you're human honey - and sometimes all of the stress and emotion just spills over a bit. Big :hug: though - it's hard to see the forest for the trees some days and it gets so overwhelming. I've been having a few of those days myself lately and it's hard not to doubt yourself, but remember, you are doing a fantastic and very difficult job. :hug:
BR - we have the opposite - dinner's fine, getting DS to eat lunch is always an issue. We've got to a point where we don't bother with a 'formal' lunch, we just put food under his nose (literally) throughout the day and see what gets eaten. Dinner though, he will happily eat a huge bowl of whatever we put into his mouth, followed by a huge bowl of fruit, as long as he has TV to distract himself with. Without TV, he won't touch even his favourite foods. And most nights, we have to feed it to him. I know it's probably a bit of a no-no, but seeing he's all ribs, I'd rather he eats a decent meal than make a fuss over how he eats it. Breakfast, on the other hand, he will eat himself - sitting down nicely at his table, and eating it all by himself. I suspect that by dinner time, he's just tired and it's all a bit difficult for him.
-
We just got another assessment back. It says DS has a global developmental delay. I am pretty shattered as they just sent it in the post. He has just turned 4 and in most areas he is scoring on what a child just shy of 3 should be doing, They never even completed the whole test, as DS started palying up a bit. He scored 12 for the Autism scale, that has a threashold of 17, meaning that he has low autistic behaviours. With the developmental behaviour checklist, he scored 31, which they consider within normal for his age, but shows that he does have some behaviour problems.
A lot of the stuff that he scored low for was because he refused to do it................... I am feeling terrible and have cried non stop for the last 24 hours. Every time I look at him I cry. I feel sick, lost and alone. I have called the assessor, but she was not there so sent an email. How can they just send something like that in the post without explaining it?! I don't even know what the long-term plan is. They never explained.
-
Suse - My DS went in for gromits etc at the age of two, he became really aggressive when he came out of the anesthetic, but this could have been due to a reaction to it.
Lilima- big hugs, I hope you can get some answers xxx
Yesterday saw big dramas in our house, while Hamish has seemed to settle in to school holidays not to badly, we meet up with friends from school at the park yesterday afternoon.
It seems two of the boys had turned on an electric bbq, they then told Hamish to touch it. Of course he did and ended up in hospital with 2nd degree burns to his hand. His screams tore my heart out, he has hypersensitivity in his hands so I can only imagine the pain he was in.
It took several doses of drugs to calm him down. His screams were ones I hope no other Mother ever has to hear.
My big problem now is worry, Will Hamish ever learn not to do what these boys tell him?
Last year they told him to kiss the toilets at school and he did, they told him to pull his pants down and he did, they told him to wee on te floor and he did. I have kept him away from the one in particular who has been caught telling him to do things by the teachers. But now this.. How do I teach him not to do what they say?
-
Tan I am SEETHING.
I only have rants punctuated by swearies.....but I think you need to speak to the parents of these children. They need some education.
*grunt*swear*punch the wall
-
Tan that is just awful. :hug: Oh man. He's so trusting, and to have that abused. Far out that's just awful.
:hug: It's so confusing hey Lilima. DH and I sat through a 45 minute OT appt, and came out and I realised...I don't even know what OT really is...I don't know up from down with this stuff.
-
Me either Nelle, I had to ask Christie....and if it was really necesary...she said YES, so I went with it.
-
My Goodnes! Poor Hamish. That is absolutely terrible! Will he end up with long term scarring?
So EI lady came over, and I could tell that she looked scared to talk to me. She then began to explain the PEP III test that J completed to me. Basically it is a clinical test that has to be done within 1.5 hours regardless of if the child can sit through it or not. Then you get a age in months for each area at the end. J's all were quite low, and well under his age, which upset me no end. Not that it was the result, but that it was so insensitive to just put it in the post.
Well it turns out that you lose 6 months off your age for each task you fail - J flat out refused to do a lot of the assessment even though it is stuff that he can do, so it was a fail. For example he lost 12 months off Gross motor as he has not shown preference for left or right hand and he wouldn't swing a ball around for her.
I am not saying that he isn't lagging in some areas's but he is def as not far behind as the test indicates. He has behaviour/anxiety probs, so of course he was never going to complete the tasks set in a clinical setting. Although in regard to the behaviour scale, he actually sits on the Lower side of normal. So there is work that needs to be done, but he is going better than first thought. He is also not on the spectrum, so again I feel funny posting in here, but I think with his behaviour/anxiety issues, if you guys don't mind I would love to be able to keep posting.
It was also clear that he prefers to learn through technology such as computers and ipad's etc. EI is going to put in an application to try and get him an ipod touch. They have said that he may be eligiable for an aid at kindy next year as he has defecits in 2 areas (behaviour and speech) so although technically I doesn't really need one, they may be able to get one which would be great as he would get that extra attention. I now have an interview with the kindy on the 14th as well as a different worker from EI so that will be good.
I have decided I am not going to put in a formal complaint, because I have to keep working with these people and I want it to be as postive as possible.
On a +++ note - we went to a 4th birthday party today, as he was awesome. So well behaved. Not one incident.
-
Lilima I am glad that some one came and sat and explained it all to you. Sorry that it didn't happen that way first. Sounds promising that they are going to look at getting J some extra support.
Lulu I don't know how I managed not to loose it at this child's mother. I think the fact that I was so focused on trying to get Hamish to breathe and help him as much as I could.
I am still quite angry , especially when Emma told me after that the two boys had turned it on and knew that it was hot. So they knew it was hot and they still told him to touch it.. I cannot get my head around a child that does this.
Emma also told me that the child tried to blame the other by saying he turned it on. I am really mad. I know this Mum quite well and we have been friends for a while. The boys went to kindy together. Unfortunately she also sees this one child (she has two) through rose colored glasses.
As for scaring we are not sure yet, he has some dressings on , which are meant to be on for 7 days but already today he has been picking them off. He hates anything on his hands and the tape holding the dressings is driving him crazy. Tomorrow I have to go get it re dressed. I can see some very nasty blisters and some skin which is dry and cracked. My main aim is to try and keep dressings on and infection out. I am aiming for Wednesday that the blisters still be intact. I guess we will know then as he is going to the burns unit so they can have a better look.
It appears that the main concern is the large blister he has which is at the base of his fingers, we are hoping it will not tighten and impair movement.
I cannot believe a trip to the local park for a picnic would end in burns... I watched him like a hawk next to the creak. I stood next to him as he climbed a tree and i watched as he happily played on the playground and rolled down the hill. I never expected a burn, we were not using the bbq's and were no where near them.
Today Emma sat him down and told him that she didn't think he was a very good friend and Hamish told me he doesn't like him anymore. He was quite upset because this little boy is coming to his birthday party in 2 weeks, that's if he can still bowl..he is meant to have a bowling party.
Sorry I just rambled along trying to get my thoughts out of my head. While Hamish lay sedated in hospital I shed a few tears with a wonderful nurse as I explained what had happened and about his Aspergers. She sat with me as I cried wondering if we will always face these challenges. I am thankful to her for taking the time to sit with me...
-
:hug: Tan. Poor little Hamish :( It's so saddening that even at such young ages, there are others who will take advantage of his condition (as it seems that this is what this little boy has been doing, and it's incredibly disturbing that his mother won't acknowledge his behaviour). :hug:
-
Heya girls! Sorry I haven't been around, been working heaps and I got sick while working... blah blah blah.
OT. Occupational Therapist. The kind our children generally see are paediatric sensory OT's. To get a good one, you need one that understands Spectrum issues as well as SPD (sensory processing disorder). If they don't know what SPD is.... move on.
88% of kids on the Spectrum have SPD. All of their issues with SPD are different, some kids only have one area, others have different ones and sometimes they have them all.
Pre-OT Matilda was 4 years old and screaming 3 hours a day and having meltdowns where we had to physically restrain her and escaping once or twice daily and running away. Matilda is now 6 and after 18 months of OT it is rare for her to have a full meltdown. I can happen maybe once or twice a month and she doesn't run anymore at all. I can now go to the toilet and shower without dead bolting the house. The OT helps them learn how to cope with their sensory issues, and has helped Matilda learn how to teach her body to calm down when she gets upset.
When Matilda got anxious, she would breath shallowly and almost hyperventilate when she was winding up for a meltdown. The OT taught her how to take deep breaths by doing exercises and games with bubbles and races with those blow toys... (think party noise makers). She gave us a listening tool to help Matilda cope with different noises (AMAZING!!) and gave us exercises to train Matilda's body to hold urine and be able to make it to the toilet.
I know that was just a peek into what we do with the OT, but I thought I'd write it out for you all :D
Oh Tan my heart breaks for him :( I hope his hands are okay.
Lilima, the ipod touch is an awesome idea, I have known quite a few spectrum families who have gotten them on funding. I haven't tried yet, but I will ;)
-
OMG Tan, I feel sick reading about what those monsters did to Hamish. To me THEY need some psychiatric help, I am a teacher and that kind of behaviour is disturbing in the extreme. Normal children do not encourage other children to do things which will harm them.
Will come back later and write more about OTs too!!
-
Tan - Just checking how H's hand is going?
Christy - youalways have awesome information to share.
Nelle - How is Riv going with Spath? What are they hoping to achieve for him in OT?
I hope everyone else is going well.
I am still not feeling the best about everything. I really want to pull him out of this EI and find something else, but as we are semi rural, the options are limited. I think because I have anxiety, I just make the whole thing worse for J.
-
Oh lil :hug:
I got a report back from our psych yesterday. She has written it in fairly strong terms to ensure we can access the maximum school aide funding....but it's still fairly confronting to read.
xoxoxo
-
Well... we are about to have a quirky kid meet up tomorrow at my house!! If anyone else with one of our super kids is in Sydney, you are more than welcome, we will be meeting up at my house from 11am so PM me & I'll give you details in the morning :D
Us... well we have a friend who is 11 and spends every Wed after school at our house. She has issues. Her mum is over it, over being yelled at constantly and having a child who is explosive. She said she wanted to rehome her daughter but her ex husband wouldn't agree to it, he thinks there is nothing wrong with T. I adore T. Yes, she is definately quirky. Yes, she has issues, but I love her. I have her a few days a week during school holidays, I have her one arvo a week after school and I have volunteered a bedroom for her if her mum needs a break.
Anyway, I suggested to her mum that she go to our OT because she was over the explosions. I said, if anything the OT can help T learn how to physically calm herself down. :dunno: but her mum is really on the edge. I love T and I hate to see this happen to them. Anyway, she went to our OT and phoned me afterwards. She said "OMG... I walked in and she knew T. She knew all about the way T works. I don't understand, I read about SPD and it doesn't make sense, she's not like that but I don't know." I explained that T has learned coping mechanisms in her world, and when she gets home she explodes with mum because mum is the one consistent thing for her, the one with unconditional love so T can relax herself.
Tonight I took T through some OT stuff... we talked about exercises that would help her. She said she didn't want to scream at her mum, and her mum cried. Their next appt with our OT isn't until next November, so I showed some exercises that the OT asked I show to them. T promised me she would do it. So we shall see. I told her the next time she came over I would check and see if she had, because she has 0 core strength and I would know.... I feel a bit over my head doing this for someone else, as I am NOT an OT, but I did as the OT asked me to do, exactly what she asked me to do (she sent me a letter). So hopefully we will see a corner turn for T. She is supposed to go to high school next year, but I can't see how she can do that. She's one of those who would turn to drugs etc because she just doesn't feel right within herself, ykwim? I just don't want to see that....
Anyway... M had a tough day today, we had a play date prior to T coming over, and that always sets M off.
-
Oh Lilima I don't know. We only had speech for 6 months, which really helped, but it was only a short term service so we're on the wait list for EI, might get in Dec or Jan. OT seems to have finished, we had maybe 3-4 sessions? I'm not any wiser, except that Riv has low registration and emotional sensory issues...I got an email from the OT asking if I had any questions. I'm not sure if it's okay to say 'yeah I do, what did all those appointments mean and what do I do now?'. :lol: Ahhhhhhhhhhh.....I never even got our Paed report...:dunno:
What other options do you think there might be Lilima? What do you think J needs? xo
Sounds like you were able to be a big help Christy! I really hope some of this stuff helps T to find ways to manage.
Lu I bet it was confronting, but I reckon that could be a pretty powerful report in terms of opening doors and finding support. xo
-
Nelle - I think it's perfectly OK to ask that. I'm so new to all of this, but I've found that I'm constantly asking, asking, asking - probably to the point of pestering, but I figure, that is what his caregivers are being paid for. What does this mean, what happens next, where to go from here, what are his strengths and weaknesses, can they tell me what they think we might expect in the future (even though it's really early days yet), etc, etc.
Christy - you are marvellous. It's fantastic that you are able to offer such support to T.
Lu - I'm sorry that the psych report was so confronting - but hope that it helps to get you guys the support you need. We got E's ADOS assessment report back and I was surprised that he scored so high (he scored 18, the cutoff for classic autism is 12 and the maximum score is 24) - all this time words like 'mild' and 'high functioning' have been used (and I know that high or low functioning refers to IQ and not to spectrum severity, but even so), so I'm now coming to terms with the fact that he may be more severely affected than what we had previously thought. In its own way it's been really confronting too. :hug: to you.
E started his EI program on Wednesday - he's in a two day a week program at Autism Qld. He seems to have gone really well in terms of settling into the routine, although it's probably not dissimilar to what he does at daycare. Apparently he did very well at sitting in his chair during lessons, and concentrated really well, aned when they brought out the mats for sleep time he went straight over to his mat, lay down, and went to sleep. (Why, oh why will he sleep for everyone else on the planet but not for us :cry:). And we had a home visit today by the centre OT, who assessed his motor skills and will give us some strategies to help with our biggest issue - sleep. Although we're thinking of buying a mat like they use at daycare and at the centre and selling his bed LOL - as he won't sleep in his bed once he wakes up in the night and spends most of the night asleep on the couch. He won't settle in our bed - just climbs and wriggles, but as soon as he goes out to the couch, he falls asleep. We're at a point where we don't care where he sleeps, as long as he sleeps.
But so far it seems positive - we were really lucky to have gained a place in the program so quickly, and AQ is a fantastic facility.
-
Suse - glad you are off to a good start with EI.
Nelle - I would be asking more questions. Also I would be pushing to get back on to speech therapy.
Christy - How did the quirky kid meet up go??
Has anyone accessed "enhanced primary care" funding? I was looking it up for a client at work and realised that kids are able to access it as well. Might help you Nelle with getting further Speech. I can give anyone the link that wants it.
We have a kindy meeting tomorrow, to discuss the plans for next year. Wish us luck!
-
We've used the enhanced primary care for OT as Matilda's OT isn't covered in the faschia funding. Its been awesome to help out financially. Personally, the $90 a week we pay for OT is full on and I love any help we can get!! I have to work one extra day a week to fund OT. Full on...
-
We just got back from the kindy assessment, and I must admit, I am a little anxious and a tad upset as I found out more information that I was not aware of.
Apparently when he goes to childcare, he basically just sits in the book corner all day with the same book on his lap. Not actually reading it, just holding it as a comfort. He really doesn't leave the corner except for meals and to go to the toilet.
When he is outside, he does the same behaviour. He just sits on a log, and does not interact and is basically anxious all day. It has just so sad........
We have put in an application for an extra assistant for him for next year. He will not participate unless an adult engages him. and now I think about it, he is a bit like that at home too.
-
Oh heck - I would really want to know that as a parent. Why wouldn't they say something???
Poor Master J, it's heartbreaking :hug:
-
I know :( I have jsut been thinking of how sad it must be for him. I am thinking of pulling him out of childcare. IT will be hard, but my parents have said that they can help out more, so that I can still work.
We have asked the director to set up a meeting as we want to know why we were not told about this. He also now has a referral to a child psychiatrist, as we happened to have a pead appt for DD, and basically hijacked her appt to discuss all of what has been going on in the past few weeks.
I really want him out of the childcare. Basically what the EI lady told us (As she observed him there a month ago, but also didn't tell me what was going on till now) was that as he is not distruptive, he just gets left. That's just not on and not fair!
I get the feeling from the kinder that they really don't want him as the kinder teacher keeps telling me it is going to be such a busy group FOR HER. Not my problem. That their own planning problem.
I am also now got the guilts about all my focus being on J, so little Miss E is missing out.
I wonder if I will ever be able to accept this. I just don't think I can
-
Hi all, sorry I have been flat out settling Hamish into school routine again.
His hand has healed really well, the Dr's were really happy with how well he healed. The major problem for me has been stopping him picking at it
He has sensitivity issues with his hands so would continually pick at the dressings, however it is just about gone and looks like only a little amount of scaring.
However I have noticed his hand seems to be super sensitive to everything at the moment.
This week has seen the return to school, and with it the first day. He walks into class and his seat had been moved. So we had a minor meltdown.
After about 10 minutes of talking to him and trying to point out the positives of his new seating position he said he would give it a go.
He has done really well at school in terms of his work this week, however we normally go down hill fast in the 2nd week for some reason.
So we are trying a reward system for him to see if he can maintain it for a little longer.
On the home front after having a chat to Autism SA we have bought him a puppy. His very own to look after , and the bit he likes the best is it gets to sleep in his room.
The hardest part for him is the social aspect of life, he just doesn't get it. He doesn't see the need to talk to people unless he really wants to, he hates people touching him full stop. He does not like loud noisy busy children apparently they annoy him.
We are still waiting for a meeting with everyone at school to see what assistance they are looking at giving him.
My biggest concern at the moment of course is for his safety and the fact that he blindly does what people tell him to do.
In the meantime I too struggle to find the balance between him and his siblings, a tween girl fast approaching puberty who needs braces and has lax ligaments and a toddler who has a temper , jealous streak and constant ear infections.
The joys of parenthood I guess.. I really wouldn't have it any other way as I love them all just the way they are. Just tried and worn out tonight
-
Well we've been back to our Paed today...
Today we got some sort of good info....
Officially with his Griffith's testing he's done - none of its says his mental age is 24 months or more - which is what is needed to start the offical testing with his autism...
The test he is going to do is the ADIR interview one
His speech is at the equiv of a 15-18 month old (he will be 30 months/aka 2 1/2 at the end of the month)
I knew it was bad.. but seeing it in writing really hit home.
So yeah - booked back in for 14/02/11 for the next Griffiths test and go from there
In the mean time he has told us that he is officially 'developmentally delayed' and he has 'sensory processing disorder' and that alone he said will help us get EI for him.
He said that they may alone be his problems, but can also possibly be ticks in the autistic box too.
Sigh.. I am exhausted today.. its been a long day!
-
Girls, I'm sorry but I'm venting again :(
Matilda's been going so well all year.... some minor setbacks....
Friday arvo had a school "celebration" that they put on for the families and some official politicians to accept some grants that the school received. We showed up at 3pm at the end of school to help with everything. I was in order of organising the food, I didn't do it all, just delegated and made a cake.
Well.... the "ceremony" started at 5pm, at 4.45pm Matilda started going flappy. She went happily enough to the ceremony, but afterwards.... she lasted 30 minutes and then started having issues with everything, than at 6.45... well the world ended. She had a huge meltdown whilst everyone else was around. We had to drop everything, pack up and leave. I carried her to the car while she scratched my face and kicked me. Then it took 10 minutes to put her in her seat. I ended up with blood on my face, DH had scratches all down his arm...
We got home and well.... it didn't get much better, at 8.30 she finally fell asleep.
Today she's been an anxious, flappy mess. I hate seeing her like this. She's doing everything she can to keep "high" and stimulated. She's just messy. Of course, I had to work today and she saved the final meltdown for me.
URGH, sometimes, I HATE AUTISM.