question for those with autistic kids
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Topic: question for those with autistic kids
Posted By: BaAsKa
Subject: question for those with autistic kids
Date Posted: 30 March 2009 at 7:21pm
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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..... |
Replies:
Posted By: JoJames
Date Posted: 30 March 2009 at 7:29pm
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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 ------------- http://www.alterna-tickers.com"> 
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Posted By: BaAsKa
Date Posted: 30 March 2009 at 7:35pm
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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 |
Posted By: JoJames
Date Posted: 30 March 2009 at 8:00pm
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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. ------------- http://www.alterna-tickers.com">
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Posted By: Aquarius
Date Posted: 31 March 2009 at 3:04pm
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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 ------------- http://www.magicalkingdoms.com/timers/"> 
mum to mr 16 & mr 10 |
Posted By: arohanui
Date Posted: 31 March 2009 at 3:31pm
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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: http://exceptionalbooks.co.nz/bookstore.php?func=14&DPT=p&DPI=45&S=fe87669fb2196a8577e0c10dea51c93e - Here's where you can buy the book ------------- Mama to DS1 (5 years), DS2 (3 years) and... http://alterna-tickers.com" rel="nofollow"> 
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Posted By: BaAsKa
Date Posted: 31 March 2009 at 8:50pm
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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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Posted By: arohanui
Date Posted: 05 April 2009 at 1:01pm
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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? ------------- Mama to DS1 (5 years), DS2 (3 years) and... http://alterna-tickers.com" rel="nofollow">
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Posted By: BaAsKa
Date Posted: 05 April 2009 at 6:45pm
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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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Posted By: arohanui
Date 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! ------------- Mama to DS1 (5 years), DS2 (3 years) and... http://alterna-tickers.com" rel="nofollow">
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Posted By: LizzyJ
Date Posted: 06 April 2009 at 7:40am
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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. ------------- http://lilypie.com">  http://lilypie.com"> 
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Posted By: Babe
Date Posted: 07 April 2009 at 8:52am
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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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Posted By: sierra34
Date 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. |
Posted By: BaAsKa
Date Posted: 07 April 2009 at 9:56am
For some reason your reply has hit home Babe and im so glad you posted that so i could see it from an adults perpective. Everything you wrote sounds so much like Bay! he too has a super high IQ that i sometimes dont know how to handle (DH and i are bright people and we still cant follow!). Last night i had a complete melt down over him! because when he gets upset he takes it to the extreme! and for a 5 yr old he really knows how to make his words cut deep!  I know i shouldnt take it personally but im a little hormonal right now so its hard not to!...amoung other things last night , this was what did it for me (i asked him to put his PJs on .."i hate you mum!! thats why nana and grandpa hate you!! and dad hates you too!! i wish you didnt live here! this isnt your house anyway because my dad pays for it so its his! so why dont you and Astin just leave"
DH then arrived home to find me in a mess and he went into Bays room and quietly spoke to bay and played magnetics with him for an hour then Bay came out a completely different child!!!! I dont get how DH can defuse the situation and i cant???
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Babe wrote:Posted By: Babe
Date Posted: 07 April 2009 at 10:13am
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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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Posted By: BaAsKa
Date Posted: 07 April 2009 at 10:54am
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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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Posted By: BaAsKa
Date Posted: 07 April 2009 at 10:57am
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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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Posted By: Aquarius
Date Posted: 07 April 2009 at 2:21pm
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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 ------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10 |
Posted By: Babe
Date 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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Posted By: BaAsKa
Date Posted: 07 April 2009 at 8:07pm
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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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Posted By: kiwigal
Date Posted: 07 April 2009 at 9:43pm
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My son has mild autism and non-verbal with very little speech. Things went downhill after the 15 month jabs and was diagnosed at 22 months. We kept in daycare until he started school last year and it has helped him to interact. He has ORRS funding which you can apply for depending on much help they need and a disability allowance through winz. Jacob's disability is so minor that you can't even tell at times. He is a very affectionate boy and loves doing what other kids are doing. Even after 4 years I still cry and wish things were different for him as he desperately wants to talk but can't get the words out. |
Posted By: BaAsKa
Date Posted: 07 April 2009 at 10:04pm
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Hi Kiwigal, i too thought daycare would do Bay the world of good (we started him right when we started pinpointed the austism) and it really did do him good!! of course he had his problems but it brought him out of his shell alot more!!
Some people will say that they never realised Bay had anything a miss (if i can put it that way) and others say they knew straight away!!
I didnt realise that he could get a disability alowance... can i ask what they would give that for? I ask because we got it for Astin to cover his food expense with all his alergies and neocate formula... |
Posted By: Babe
Date Posted: 08 April 2009 at 8:22am
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The Child Disability Allowance is there for any parents with a child that has needs that require special care. Jake has it for his reflux/dairy intolerance (even though hes off formula now and we don't actually have to buy him anything special other than lactose-free milk which is $4 a week). You should be able to get it for Bay and if Astin still has allergies for him too. Its not income-tested and its per child not per family. -------------
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Posted By: Aquarius
Date Posted: 08 April 2009 at 8:30am
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hey once again...great if you have the diagnosis! that is your ticket to the following.
WINZ...the basic disability allowance is around $80 a fortnight. it will go up if he has medical needs or any additional costs eg: nappies, bed wetter (laundry costs or even a dryer), allergies or unusal eating needs. they may ask for proof of costs. we are lucky in the sense that our boy doesnt need the extras so we get $80 fortnightly....no questions asked with proof. ORRS...through ministry of education...very hard to get/keep which is a shame as it is sooooo important! bloody government!...you will get assigned a special education coordinator who will do all the assessment for you (some are better than others!!!) this will get the child a teacher aide to work one on one with him at kindy/school...they will help him get ajusted and cope..you may not get one to cover all the time , depending on severity. we got ORRS funding for 4 years covering his first year of kindy and first 3 years of school. (only for half a day though) Respite....yes you can pay your mum to look after him and get reimbursed at the end of the year.or your mum can look after him and if you cant afford to pay up front she will get reimbursed at the end of the year...you choose. the rate is around $73.00 per day. so if you get allocation of 20 days a year...you do the math... any more questions...i'm more than happy to help. ------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10 |
Posted By: Babe
Date Posted: 08 April 2009 at 8:44am
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Question - has anybody looked into what jim carreys girlfriend did for her son?? The blonde chick I can't remember her name... -------------
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Posted By: BaAsKa
Date Posted: 08 April 2009 at 9:25am
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I think his girlfriends name is Jenny McCarthy?? dunno what she did for him though??.
wow there is alot of help out there!!! I must ring winz and respite then. We were under the impression that respite was something where a stranger came and took your child overnight!! 
thanks for all the info ladies!! its greatly appreciated!!! |
Posted By: Aquarius
Date Posted: 08 April 2009 at 11:38am
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i thought the same of respite too and almost declined the idea! so go for it... all of the above does take a bit of setting up and what have you but its worth it i think...
Jenny Mccarthy is from the camp of 'Autism can be cured".....i'm not so sure. i think someone will always be autistic but that in no way means they cant learn and improve. My son now 8 is light years ahead of where we were when he was diagnosed at 2. we were similar to you kiwigal, in that he had hardly no speech at all for a few years but he has great basic skills now and can be quite independant around the home...its out in public that i hate as it is much more noticable, and as they look completely 'normal' people notice alot quicker...he appears soo naughty. what i think helped us alot........ 1. i left work when he was diagnosed. no, we couldnt afford to but he was more important. 2. we accepted his condition with open arms and rather than try and change him, we changed. 3. we have learnt to laugh (yes there were tears)the things he does are amazing. we learn from him.hes honest, straightfoward, takes no crap and doesnt bet around the bush! things alot of us adults need to do. 4. try all suggestions! hey, none may work but ONE might. 5. love the people that love and understand and have time for them. it will dwindle down to very few ..fast. 6.Got to be done as a family.stand strong TOGETHER. i would be a mess and it just wouldnt work if i didnt have Karl (the dad) and Mr 14 (big brother)..we all play important roles and when one of us is not up to it, the others usally are. others please add some more.... ------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10 |
Posted By: Bizzy
Date Posted: 08 April 2009 at 11:52am
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jenny mccarthy used diet - among other things - to help change her son.
i had always been under the impression that asbergers was a mild form of autism (hubbys son was thought to have it) and i am sure that once you all understand it better things will improve. will say too that i hope your SIL bucks up her ideas and she shouldnt be discussing your son with anyone! that would make my blood boil... and with regard to the outburst the other night my thought would be he obviously has been hearing some adult conversations that he shouldnt which has enabled him to use that info in a hurtful way...so maybe now is a good time to watch what you say and when you say and who is in hearing range - something all parents have to learn, as i am finding out (ms potty mouth that i am). 
oh and have you been in touch with the autism sociey yet? (thats just me being nosey now). |
Posted By: BaAsKa
Date Posted: 08 April 2009 at 12:08pm
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Im not sure if i believe the whole "autism can be cured" thing.....
Im with you Aquarius - i dread going out in public (mostly just the big groups of people!) because that is where Bay will either freak out and hide and go the other extreme and jump around yelling and screaming and im sure to others it does look like hes simply naughty and uncontrolable!! Bizzy - his words the other night didnt come so much from what we had said "around him" but i tend to joke with the inlaws about things like joking about each of us (mainly MIL and I) being pains in the bums to each other BUT i wasnt thinking about the fact that Bay takes things very litterally and doesnt understand joking so to him it was serious.....something that obviously wont be said around him anymore!!! |
Posted By: Aquarius
Date Posted: 08 April 2009 at 12:09pm
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hey we all know what a good diet can do...work wonders for all of us
i tried with Enson and it was the worse and most expensive two weeks yet...he eats like a bird and of course what he did eat was on the no-no list... i do try and get omege3 fish oil in him (they can come in nice tasting little gel caps) but he is so clever at sniffing and inspecting all that passes his lips! this is known to supplement what might not be the best diet and if any nutrient is the most important it is bound to be this one, as it aids brain function and thinking. so if casein and gluten free diets are just not gonna happen (especially with the cost of feeding a family these days) try just adding this one supplement. ------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10 |
Posted By: Babe
Date Posted: 08 April 2009 at 6:03pm
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Yep fish oil is great!! I don't know about gluten-free diets as it didn't figure for us (that was over 20 years ago when real farmers didn't do diets lol) but I would absolutely definitely absolutely cut out processed, flavoured food and coloured crap. I can actually dig out the list my parents used and PM you if you like. -------------
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Posted By: BaAsKa
Date Posted: 08 April 2009 at 7:19pm
| yes i could do with that list!!. We avoid coloured fizzies, cordials etc because it makes him super hypo and unruley!! |