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BaAsKa
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Topic: question for those with autistic kids Posted: 30 March 2009 at 7:21pm |
I was waiting till we had seen the specialist again to explain to Bailey about his aspergers BUT here we are now, saw specialist today and i have no idea what im meant to say to Bay?????? we have obviously avoided telling him till now because we didnt know what to say but now we are going to start counceling with him (mainly for us to understand and deal with him better!) so we are going to have to explain......
Advice very much appreciated.....
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JoJames
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Posted: 30 March 2009 at 7:29pm |
Hi have you talked to autism NZ.? they have brilliant field officers who can talk you through it. I'm quite familiar with the Tauranga one through work and I'm sure they could give you advice over the phone or let you know if there are people in Whakatane way. Their number is 0800 571 000
Also have you checked out their website?
www.autismnz.org.nz
Good Luck
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BaAsKa
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Posted: 30 March 2009 at 7:35pm |
awsome thankyou jojames, i will check them out.
Iv been in somewhat denial until now so hadnt done much in the way of informing myself
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JoJames
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Posted: 30 March 2009 at 8:00pm |
I can definately understand that!! These guys are great and their website has a lending library if you're interested. Good Luck with everything, I'm sure when you start into it you'll find some great supports out there.
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Aquarius
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Posted: 31 March 2009 at 3:04pm |
just noticed this post now sorry....
i'm presuming you mean you want to know how to tell your son he has aspergers???
why???
what i mean is, why do you feel you need to sit down a 5yr old boy, right on the verge of his school career, and inform him he has a disability.
why not just think outside the square and deal with his quirky ways (its okay my 8 yr has autism) and help him merge in the best he can.
i'm just thinking that telling him he has 'something' will give him an indication it will be fixed, when lets face it he may not....instead say something like..'hey the way your feeling and the things you do are okay..its just You!...the great thing is you are not alone and we are going to work on getting ideas for when you are having trouble dealing with situations that aren't in your control"...
okay i know he only 5 but something like that...
and to you as parents...its not all doom and gloom trust me...i know it can seem daunting! these kids are placed with parents who have what it takes to manage..even if youmay not think so right now..
xx
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arohanui
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Posted: 31 March 2009 at 3:31pm |
I think it's great you want to explain to Bailey that he has aspergers, cos I think it will help him understand and to feel better about himself... I taught a boy who at 11 years old didn't know why he was "different" and I think he struggled because of it. On the other side of the coin, I know a family who has a girl who has aspergers, she totally knows about it and it helps to know that there's other people out there who have it too - they understand eachother. It was so cool when she met an adult who told her that he had aspergers, she was just amazed. It was very cool.
There's some fabulous books out there about explaining what kids who have aspergers may be like. I have one called "What is is to be Me! An Asperger Kid Book" written by Angela Wine, illustrations by David Crary. It has brilliant simple and fun illustrations. Here's the text...
Hi. My name is Danny. I have Asperger's Syndrome.
Asperger's Syndrome means there are some things I am very good at. I am great at computers!
There are also some things that I'm not very good at. Writing is hard for me.
Asperger's also means I have very strong senses. I can hear like a superhero.
Sometimes the sounds hurt my ears or make me scared. Covering my ears makes me feel better.
My tastes are powerful. I always know when Mommy tries to sneak different stuff into my food.
Sometimes I don't want to be touched. Sometimes I like to be wrapped up tight.
I am a very friendly boy... but sometimes I stand too close.
I like to talk about my favourite things... but I don't always notice when others stop listening.
I like to ask a lot of questions because I always want to know how things work.
Asperger's also means that I take what people say literally. "I'm so hungry I could eat a horse!"
Being an Asperger kid makes me a little different from other kids... but it is also what makes me cool.
I am proud to be an Asperger kid. It is what makes me.... ME!!!!
So you could read this book (or one like it, there's a few out there) with Bailey, and then talk about how he's like Danny
Also, I have friends who have an 11 year old girl with aspergers, she's the one who knows that she has aspergers and is comfortable with it. I'd be happy to pass on your details to the parents if you would like to get in touch with other parents who are going through it too.
ETA: Here's where you can buy the book
Edited by arohanui
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Mama to DS1 (5 years), DS2 (3 years) and...
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BaAsKa
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Posted: 31 March 2009 at 8:50pm |
Oh gez! i just wrote this big reply then somehow quit out before posting!!! argh!....ok il try again!
I want to tell Bay because he often asks why he is so different from other kids and he doesnt understand why his cousin (he is 6) calls him a dork and so does my sister! (  ) because Bay just doesnt talk kids slang like my nephew and will often say things like "iv had a super great day today"...So i thought id explain that he is a wee bit more special, i just dont know how to explain this to a 5 yr old who takes things so literally!
Liz that liitle story sounds like Bay couldv writen it!! sounds so much like him!!!
I asked DH last night if he thought something was not right with Bay because he would always avoid the subject and he said "yeah i knew there was something up but i didnt want to admit it but now we know and im glad"
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arohanui
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Posted: 05 April 2009 at 1:01pm |
I just searched for this thread cos I was gonna bump it up and ask how things are going, I hadn't seen you'd replied! It must be such a relief for you all to have answers as to why Bay has the wee quirks he does
I think that reading the book to Bay's cousin would help him to understand too, why is cousin seems a bit weird to him. Probably very teacherish of me but there is such power in using the written word and pictures to get an idea across to kids - especially kids with aspergers... they like the visual representation, and the repetition when the book is read over and over... it's predictable and 'safe', and it helps them make sense of the world around them.
Have you guys had much support on how to best help Bay? And have you got any funding to get him into respite care every so often?
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BaAsKa
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Posted: 05 April 2009 at 6:45pm |
Hi Liz, Im definately going to give that book a go with Bay to help him understand better. my BIL has explained to my nephew about Bay and BIL has been great with him too but my sister (BILs partner) still doesnt get it!!!!  she still thinks hes just weird! and she keeps telling her clients that he has toretz (SP???) !!!!!!!!
We have been booked in to see an aspergers specialist who will explain it alot better for us and give us tips on how to deal with him and we are also going to do counciling with him but not until iv had bubs because il just end up crying the whole way through and getting nowhere!!
RE the respite care - i feel like im not entitled to this because Bay is nowhere near as bad as some others  what does respite care do???? iv heard of them but not sure exactly how they help??
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arohanui
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Posted: 05 April 2009 at 7:45pm |
Oh man, your sister has a LONG way to go to understand her nephew!!! That sucks  Maybe she needs to read the simple picture book too, to make her understand  Actually she needs a stern talking to about what aspergers is and what it's like for those kids. Send her to me, I'll tell her all about it  Oooo actually there are some great videos out there that maybe you could all sit down as an extended family and watch. Ask the aspergers specialist if he has any you can borrow.
My friend runs a respite home in Auckland, they have a variety of kids (aged up to 16 years) who come for a night or two, just to give their parents (and siblings) a bit of space. The individual chn get funding for it. I'm not sure what's available in Kawerau, but hopefully the aspergers specialist will be able to tell you more. The chn my friend looks after for respite vary in their degrees of autism, from what seems to others more like behaviour difficulties (aspergers) to the full on not speaking and wearing earmuffs 24/7.
My friends who have the 11 yr old with aspergers have just started sending their daughter there, and she loves it - and they appreciate the break. Their other daughters are able to have friends over to stay the night for the first time.
It's also worth finding out what support their is for Bay at school - how's he going there? Does his teacher have much training/understanding about aspergers?
Frankly, I think kids with aspergers are delightful. Yes there is extra challenges (and boy it must be tough on the parents) but there is something so refreshing about that innocent honesty!
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LizzyJ
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Posted: 06 April 2009 at 7:40am |
respite care is MOH paying for someone else to look after your child for a couple of hours or even overnight, this is designed to give you a break.
I coach 5 aspergers kids this year (by kids actually three of them are in their 20's). All but one are in out top team (special olympics) and they are generally leaders. Their trips to tounaments are paid for by respite care for those who have not left home or are in houses. One is on his own flatting and doing really well. All of ours have other conditions except one who is streight ADHD and Aspergers. When he is older if you need to boost his comfidence get him involved in Special Olympic (minimum age is 8). All the aspergers kids generally end up as leaders as they have the highet communication skills.
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Babe
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Posted: 07 April 2009 at 8:52am |
I have ADHD and Aspergers but thanks to my fabulous, awesome, wonderful parents its very hard for outsiders to pick up on now. They taught me skills to handle my various "individual traits" and ok I still get completely overwhelmed if I'm surrounded by too many people and too much noise but I know how to manage it even if it is hiding in the bathroom til I'm back in a good space lol I'm on a very strict diet - nothing processed, coloured, flavoured, etc. I take fish oil which helps with my PND, the mood swings that come with aspergers and ADHD and just general brain function. I have a super high IQ but my parents were very patient and determined and taught me how to deal with the stuff I'm not so good at too. I would consider myself a pretty well-rounded person now. I have more self-doubt than others do and I question peoples thoughts toward me - even on here I worry if I'm annoying people and if they're secretly thinking that I'm a pain - but I had a pretty awful extended family with aunties who would tell me that my mum should've aborted me and cousins who would physical beat me and tell me that I was a weirdo and stupid and hypo and annoying so lol y'know there are scars. My parents didn't know about that stuff though it was always done in secret. If Baileys aunt is being less than understanding I'd suggest keeping Bailey away from her til it sorts itself out.
I recommend tons of positive reinforcement!! Its so important! Uhm being patient with the little stuff and having catchphrases like "we respect peoples body bubbles" or somethng to help him remember to keep out of other peoples space. It takes awhile but it'll click as he grows and as you stay consistent.
Hope some of this helps. Kids who are more individual than others can turn out really balanced and have wonderful lives
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sierra34
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Posted: 07 April 2009 at 9:06am |
I've just read your post re telling Baily about his Aspergers. In all honesty 5 years-old is too young to comprehend the diagnosis, I have a 10 year old son who was diagnosed at age three and it was only when he was 8 did he have some idea that he was different. he knows he has Aspergers Syndrome, but we do not refer to it as a disability, it is a difficulty that he currently has and is learning strategies to manage it. What I would suggest you do is get your "back up crew" in place, that would be Group Special Education, the RTLB teacher, The Child Mental Health unit of your DHB. Hopefully you won't need them, but if you suddenly find you do, you may find you have waiting lists several months long to access help.
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BaAsKa
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Posted: 07 April 2009 at 9:56am |
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Babe
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Posted: 07 April 2009 at 10:13am |
Mummys take things to heart alot more and I think our children have a deeper emotional connection to us (I mean we carry them for 9 months!!).
I suggest being very firm with Bailey when that happens but keeping your voice low and staying very calm then giving him an emotional timeout.
Example - Bay says everybody hates you, You: 'Bailey, that is not an acceptable way to talk to people. You are a kind boy but those are not kind words. Please go and put your pjs on.' Then basically go get busy doing something and tune him out emotionally. Don't have any reaction at all as it will probably wind him up furthur and he'll get to the point where he feels he can't back down which will upset him more. Answer him calmly if he talks to you but don't engage with him. When hes calmed down and has his pjs on then I recommend sitting down with him and while you're playing or something say that he hurt your feelings. Reassure him that you love him and consistently point out that he is a kind, generous, gentle boy but when he says stuff like that it upsets people that he loves.
I remember my mum doing that with me, she didn't disconnect emotionally though and it did and still does make me feel backed into a corner, but afterwards she'd talk about what a lovely personality I had and encourage the character traits she wanted me to develop without making me feel like an awful person. She'd say that words that hurt didn't suit a kind person like me. My dad always managed to get me calm alot faster because he just wouldn't engage emotionally. He'd stay real calm and basically detach his feelings from the situation. I try to do that now with Jake and I also find it a good skill to have with DP.
This is advice from my point of view as a child/adult with aspergers, others who work with children might have different opinions but thats really what helped me. I had a huge amount of emotions running round in me as a kid and I lacked the skill to control and direct them so when someone who was dealing with me had too much emotion it became nearly impossible for the situation to defuse, IYKWIM??
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BaAsKa
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Posted: 07 April 2009 at 10:54am |
that makes alot of sense!! DH does seem very emotionally turned off when defusing the situation but i just cant seem to do the same thing!! doesnt help that im a big sook at the moment!!
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BaAsKa
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Posted: 07 April 2009 at 10:57am |
I had a chat with DH about the respite care the other night too and hes not keen on it  he said "i dont want Bay to think we are sending him away because he has aspergers"....
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Aquarius
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Posted: 07 April 2009 at 2:21pm |
we are the same with respite care... the thought of it makes me cringe..plus there is no way i would put him in the care of people he doesnt know he would flip, fast!!
good news is though you can use family members for care plus you will get assessed by the local respite authority of where ever you are (GP will tell you) they will come round and get a picture of the situation, have a chat and then allocate you with a certain amount of days per year. ( i think average around 21days per annum)this may need to be assessed yearly and i think you need a n offical diagnosis...so you cant just self diagnos your child.
those 21 days are then yours to do how you see fit.
we have done it for the past 5 years with no problems...as he has been with my mum or sister (if we havent used all the days by the end of the year we just claim the rest anyway and at the end of each year fill out the form, send to ministry of health and they immediatly reimbuse..no mucking around as all the entitlement has been done at the start!
we are talking around $2000. nice
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Babe
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Posted: 07 April 2009 at 5:32pm |
As long as Bailey knows that you love him no matter what then you're doing a great job! Having Astin and another bub on the way means that Bay isn't gonna get 100% of your attention and of course its hard to stay detached when you're a raging ball of hormones  but take it one step at a time and as you start putting actions and responses into place it'll become a habit and easier. I'd hate to put Jake into respite care with strangers too. Using family if you need a break is a good idea though. My grandmother lived with or near us and was like a third parent to us kids and while mum and dad never left us unless they had a conference on it helped having another adult around to bear the load. Maybe look into having a student nanny to help with Astin? I think Chonny has one staying with them at the mo and I had friends who had student nannys stay alot and it was great. It may not be at that point for you guys though so just take it as it comes, find out all your options and cross each bridge as you come to it
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BaAsKa
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Posted: 07 April 2009 at 8:07pm |
My mum takes Bay alot because she does sooooo well with dealing with him!!, if we did the respite care can we pay her to help?? is that how it works??? and wow $2000 would never go amiss!!!
Bay has been officailly diagnosed and we received a letter in the mail the other day to keep for reference and one was sent to bays doctor/pead.
I definately think il be better at detaching once baby is born....things wont bug me so much!!!...
thankyou all for your help/support and advice it means a great deal to me!!
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