question for those with autistic kids

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

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.

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

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?

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!

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

Babe wrote: 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

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???

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!!

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

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!!