Aspergers/Autism/Sensory Integration Chatter

[~Saram~]

Holly my DS is the same with his pants, opposite with his shirt. I know it looks funny but it makes them feel better and better able to cope with more important things IYKWIM. We have found that by getting him really tight socks and shoes the pants aren't such a big problem anymore, so maybe look into a compression or weighted vest for him.

Hair issues - you can desensitive them by using sensory tools but we haven't done any of this yet, maybe Christy

[NickyC]

Hi All again. Thank-you for all your kind words and welcome.

Everyone has been busy. I have had 2 very sick children to deal with in the meanwhile.

Can I ask has anyone put their child on a gluten free diet. With Oscar we have put him on it for almost 2 years now. I can swear by it the first couple days we cut it out his behaviour was completely different. He stopped bouncing off the walls, being annoying in the shopping centre and he actually started listening and even talking more. Eye contact improved also. Apparently for some ASD children its like giving them steroids it makes them uncontrollable. His diet was also supplemented with vitamins containing A ... which improves behaviour immensely. Fish oil has helped his concentration immensely. The transformation was amazing and he has been developing ever since.

This diet change was a very hard thing to do. He was a compulsive 'gager' and everything had to be plain and very smooth. 2 years on with persistence he has changed to the point that he eats soups (which he would gag and vomit up initially and scream his heart out saying no to) and even saucy things ... spag bog he loves. He even eats capsicum and broccoli.

MBP - I know exactly how it is. Oscar hated hair cuts too ... I swear he would scream to the point that he would go blue in the face and vomit ... It was emotionally traumatic for me holding him and his dad trying to cut his hair. But now he actually wants hair cuts and looks forward to it. He even says 'mummy my hair is growing to grow back' and 'I look very smart now'. What caused this. We changed the hair clippers to one that has multi-coloured combs. It became a little game 'which one should we cut your hair with ... which one do you want to hold?'. It also emits a lower level of noise. It has made hair cuts a wonderful experience. Anything to make it fun does the trick I guess. He loved washing his hair away and waving to it.


All the best!

Nicky C

[maz]

Wilhelm went through a stage (3 years ) were he would only wear shorts, ug boots and a tshirt..inter or summer. I would get so many mean looks from older ladies it wasnt funny but what the hell could I do? He's just starting to wear long pants occasionally and jackets instead of jumpers...so its a start.

We have a PSP meeting at schhol today for him...time for maz to let rip at his know all special ed teacher! Im really peeved cause he hates being called Wil (so do I) and he gets an award last week and the stupid teacher write Will in the name section! So if yo hear thunder at 10am this morning you know its me going off! We've also found he wets his bed the nights after he has the special needs class.......but of course tha twould be my fault cause he is so good at school.....doesnt matter that ive told them so many times thaqt it is at home and 24 hours later that he lashes out.

I swear sometimes the teacher make you feel like your making it up...like we're trying to make their life hard for teh 6 hours they have them. grrrrrr

We also bought a small laptop that he's been aloud to play on after school for an hour. Its helped with getting him to settle down. We got it from WOW super store for $700 and although it has no cd driv eon it..its a nice little computer for both the boys to use. We thought we may as well get something they can use for school ect as we now get 50% at tax time

OH and its raining today...Wilhelm HATES the rain...gets scared shiatless of it so he had a fit when I dropped him of at school.

Best go......need to change a little boys bum then into the ring i go

[christy]

Ah Maz I hope it went okay & you stood your ground.

We had a good week. M is going to a social group with 5 children with the OT on Sat. Its in the guise of a Martial arts class for kids with sensory integration issues, but its actually a social class designed to build their confidence. I can't wait to see what she does with them.

[[M]umma[M]ia]

BIL hates the rain too.. but i think its more to do with his hair getting wet?

Christy - cant wait to hear how M goes

[barbie-up]

Hi - I got the report today from Alex's paed. on the testing from the past three weeks. There seem to be three different scales and testing that were done.

Autistic Diagnostic Observation Schedule (ADOS) - 11 out of what ever that is scored out of. Classification: Autism Spectrum Disorder.

Griffiths Mental Development Scales - showed normal development. This has developmental ages in months for areas of Locomotor skills, personal social skills, hearing and speech, eye and hand coordination, perhormance and practicial reasoning. Alex is 40 months old and all of his scores came in between 36 and 42 months.

Schopler Childhood Autism Rating Scale (CARS) - 32 'which is in the range for a diagnosis of autism'.

"The reported history, my observations, ADOS and CARS scores are supportive of a diagnosis of high functioning autism spectrum disorder".

I have to get onto have a speech/language and psychological assessment to complete her developmental profile.

What do they do in a psychological assessment? Do they deal with food issues?

One thing I did get today was a list of information sessions around the city/Preston area throughout the year on food, teaching literacy to children with autism, preschool and school integration ideas etc that sound really good.

I've known for over a year that there was something different, and now it's all on record.

I am not with Alex's dad and when I first bought it up with him last year he refused to acknowledge anything. Should I give him a copy of the report?

[~Saram~]

Hi Barb,

How are you handling all this now, it's always a bit of a shock when the paperwork comes through no matter how much we know it in our heart.

Food issues - as in texture, taste etc even putting too much in their mouth is a sensory processing issue and is usually dealt with an OT, find a good one who deals with SPD!

as for your partner I think it would be good to share it with him, he may not be ready to deal with it at the moment but at least you have laid the groundwork.

[christy]

I forgot to say how the martial arts thingo went!! Apparently there were 5 children, 2 martial arts experts (?? maybe just black belts dunno) and M's OT. They worked on body awareness and did heaps of "how to relate to sensai" and "respect your team" sort of things. DH went with M and loved it. So hopefully KRudd's $$ comes through so she can keep going. Otherwise we have to wait until April because we only have enough $$ for one thing per term. This term is swimming. We just don't have the $$ to do everything, as much as I want too.... damn $$. If we had a fricken diagnosis at least the OT would be covered

[maz]

BIL hates the rain too.. but i think its more to do with his hair getting wet?

I hate my hair being wet!!! I sometimes wonder if Im on the spectrum somewere I am so anal about stuff and god I get in the worst mood's if things dont go my way.....and counting...I know im obsessed with counting...it was alright when I worked in the bank.....I always had to count and it sort of worked but I cant even have a money bank inthe house without having to open it and count what money is in it.

Barb - give him the paper work hon. men find it so much harder then us woman to get a grip of these things....heaven knows my DH was in denial for 3 years about Wilhelm...until we got the paper work.

Christy - Im so glad the martial art thing went well. I know Wilhelm loves it (I use to do it as a teenager and have showed him some of what i know)....hmmm I think I might look into it a bit more nore for him. Might be a great way for him to curb his anger. WE got our Unvcle rudd money on saturday so have no paid for the little lap top we bought. Its helped with calimng time. He wears head phones for it and he often laughs out loud. We go and see what he's up to and he's watching some mario thing on you tube.

Our PSG meeting went really well. I think the special needs teacher thoguht I was trying to work against her and it wasnt until the vice principal stepped up and backed me with things I do that she finally understood im not the biratch she thought I was. I also said that I would like the Career to step back a bit more as I find she is mothering him to much. EG - I got an invite to come have lunch with wilhelm at his special needs class...turned up and the career was there, who took over conversations with Wilhelm and kept butting in. she also mentioned he could play the principals DS when the principal and i both said no and he went off. I was ****ed and let her know it in front of everyone. Lucky for me the Vice principal was there and was the whole thing. I todl the special needs teacher that next time they have a parent student lunch like that that the career's need to step back and let the kids have it with their parents....she started getting defensive BUT the VP steppe din and agreed with me and she noticed that the career took over 'parent duties' (as she put it).
I understand that she loves wilhelm and I appreciahte that but she has to realise that Wilhelm is my son not her's and she needs to step back.

Other then that all is good (knock on wood) even though its afullmoon. He even wore long patns and a long sleeved jacket to school today Jed and i were so happy!!!!

[~Saram~]

Maz DH and i are always telling each other we belong on the spectrum! Niether of us live for being social and I have a very sensitive sense of smell.

Christy pleased to hear the martial arts went well! Hope you can get that offical paperwork soon so you can get some financial help.

Xander has been really sad lately. I'm on the verge of saying depressed and I don't know why. He says he loves school although he thinks it is too long. He is having some trouble with the kids but I asked him f it was bothering him and he said no. He doesn't lie but maybe he doesn't understand/can't communicate what is wrong???? Last night he cried himself to sleep and he is always saying he's a bad person or hopeless! I don't know where he is even getting the words from??? Any ideas. I just want him to be happy

[christy]

oh Saram how sad for the poor tyke. He is such a beautiful boy.... that breaks my heart, it must destroy yours. I was reading somewhere about how some of these kids have such low self esteem. There is another boy at Matilda's school with Asperger's who has said that no one likes him and it makes him sad at a school presentation its not totally true its just that he can't work out the social things but it doesn't matter about the truth its that he thinks that and it makes him sad.

We've done a few playdates with him and Matilda to try and build a friendship so the quirky kids get to stick together and have friends... its hard.

Okay... today I officially became a super mummy. Seriously... I did something I'm so fricken proud of. Matilda likes to sleep with weight on her chest, but she hates her feet being covered, so it means weighted blankets won't work etc.... but she loves her wheat bag to sleep with unfortunately its not big enough and falls off. The last week, everytime its fallen off, she's woken up and started crying and wakes the whole house. So in my sleep deprived state, I went to Spotlight and picked up some stuff and to the health food shop and I have sewn together a wheat bag "cuddle buddy" for Matilda. Its about an A3 sized wheat bag that I've put a face on and arms & legs!!! Its so amazingly cute and I filled it with 1.5kg of wheat, 5 drops of lavender oil and stuffing... (the stuffed animal sort). Its gorgeous and I will put it up on facebook as soon as I can find the USB cable

Found it!!! https://www.bellybelly.com.au/forums...hp?photo=12890

[christy]

Has anyone here heard of DAN doctors? I'm just a bit curious and my curiosty has got the better of me.

[~Saram~]

I love the cuddle buddy! Where did you get the wheat from, the health food shop??? I have made a quilt for Xan that I want to weight and I'm looking for the easiest alternative. He likes his wheat bag so this seems lke a great idea!!!!

Never heard of DAN doctors - what are they?

Yes it is breaking my heart! He tells me today kids are making fun of him in the toilets and pulling his pants down! I'm guessing this has got something to do with the way he is dressing himself or getting organised after going to the toilet so Monday morning I'm going up to the school AGAIN! Grrrr - kids are nasty!

[christy]

I got the wheat from the organic shop for $2.50 a kg.

DAN is "Defeat Autism Now" and I first read it from Jenny McCarthy's book... she's Jim Carrey's girlfriend and has written 2 books about her & her son's journey with autism.

Then this week I went to a doctor who is a medical practitioner who also does the wholeness/wellbeing type thing. I went because I'm exhausted most of the time and I wanted to make sure there wasn't something other than life causing it. I was telling him about life and mentioned Matilda. He said "why aren't you bringing her to me?" and I said "ummm.... why?" and he said he was the head of DAN in NSW. So I've done a bit of reading... apparently these Dr's go through complete biochemistrys and try to find chemical reasons why these kids brains are a bit different. Some kids have heavy yeast issues or stuff like that and changing their chemical make up the ASD traits lessen. I don't know how I feel about it or if I believe it entirely, but I'm thinking about making an appointment for Matilda anyway. Jenny McCarthy's son went from having seizures and rocking in the corner to playing on a baseball team... so its interesting but apparently hard hard work. I don't know if I have it in me!!

[~Saram~]

Hmm sounds interesting. Is it a lot of work or a lot of money??? I've heard there are quite a few "agencies" out there making a mint out of "curing" autism so maybe be a little cautious but wow if it can turn things around....

[min]

Sarah, that is awful about Xander being teased - I cann't stand cruel children!!

Bought the sweetest picture book for Jackson and Leo today, I think it is called "My Mummy Has A House Inside Her. Is all about the mummy being pregnant and how she can get sick and tired etc. I read it to him and all he could say was "mummy, can we make snow cones?"
Also bought an updated week by week pregnancy book to have open on my dresser for the corresponding week with real pictures of a naked lady and her bump with a superimposed baby inside her tummy at all the stages so he can really understand it all. Now I just have to get DH to stop looking at the nudy pictures - sooooo mature!!

Bit tired this week - Jackson is going through such a cheeky/naughty/precocious stage and I just don't know how to deal with it! He has always been so well behaved (aside from the obvious behavioural issues like tantrums, mainly out of frustration etc) and now he is constantly yelling, answering back, telling people to shut up and go away. I just can't seem to get through to him. I have pulled him out of creche to start 3 yo kinder next term, along with joining a new social group and continuing his swimming lessons. I think he needs a change, his improvement seems to have plateued where he was and I am freaking out about him starting 4yo kinder next year and then school the year after that, it just doesn't seem like he is ever going to be ready, or is it just that I am never going to be ready?

[christy]

Well girls long time no chat. For those that don't know, we've been in hospital since Friday with Matilda with probable viral meningitis. To say its scary would be to say the least. She was quite crook on Friday and most of Saturday. When we got to the hospital she was completely unresponsive to anyone and her blood tests were very scary. As we were waiting for the CT scan and lumbar puncture though, she perked up and was sitting up in bed telling us knock knock jokes. The paediatrician decided not to do a lumbar puncture or CT because she was so bright and they didn't want to put her under a GA while her bloods were so messy.

Anyway I've posted in the boo hoo room under the croup thing.

One good thing was the paediatrician on the ward talked with us yesterday about her. He's convinced she has Asperger's as he works with kids with it at an assessment centre in Chatswood. I told him our issues with diagnosis and the public paed we were assigned. He put a list together for me of paeds and wrote me a referral to them. He also told me if I know someone who lives in the Chatswood catchment than I could use their address and see him!!! He's our age with a 2 yr old, so now I'm off to find a friend in that area....

So now the benefit of viral meningitis is that we may be closer to help for M's "issues". The head paediatrician agreed with the resident when he came to see M. In fact he was shocked that she hasn't had the diagnosis made earlier. So, hopefully we will get closer to this!

[MantaRay]

Oh Christy, that's great news. I am so glad that something helpful has happened for you during this awful time.I hope you can find someone in Chatswood.