Aspergers/Autism/Sensory Integration Chatter #2

[MantaRay]

LR. I know how scary it is to be in that place. I hope you get some answers. I am not sure whether they do assessments at that age, but a talk to a GP you trust might be a great place to start.

Christy, I hope you are going ok this week

As for us, we had the next round of assessments today - physio and OT. It went really well, and definitely better than I was expecting. He did really well with both, and the OT confirmed what the paed told us last time, that he probably doesn't fit into the Aspergers label. We get the final results in a month or so, but I think we can say that he won't be given a label at this stage. Which is a mixed result I guess, but I do think it's the right one at this time. They are going to give us some strategies to help with his quirks so it has been worthwhile going through the process. And I do feel some relief now that we've done it. So that's where we are for now.

And once again he gave us a good laugh. When the OT asked him to make a rocket like hers with blocks, he did it then said "that's not a very good rocket, I could have made a better one!". Gotta love him!

ETA: Christy, the OT was Annabelle and she was fantastic!

[barbie-up]

Hi - my Alex goes to early intervention once a week where they use the Floortime model from the US. Part of it is getting the child to lead the play and making interactions with the play, usually involving some sort of problem that they have to solve or use their words to work it out.

Say, hiding something and then playing a game to look for it. Your facial expressions and actions are exaggerated, lots of 'oh no' and 'what will we do?' Perhaps with the plugs it might involve you having a toy or something and getting in his way with it, or bumping into the plugs with a big 'oh no ... they fell over' ... sorta thing. What else can you use the leaves or nut things for ? you could make one a car and interact with his plugs that way.

Also, I heard this morning something about a bonus for the carers payment. I'm usually on top of the extras, but missed this one completely - does anyone know what its' about ?

[~Saram~]

Mantaray - I'm pleased your assessments are going well and that you are happy with the outcomes - that is great news! PMSL at the rocket :-)

Lestyrox - {{hugs}} - if it were me I would go and talk to your GP be as open an honest as you can and explain that you are worried about his little quirks and would like to get some early intervention if there is something going on. In my experience it is better to get early intervention for a child who is quirky then wait until they are 8-9 and already really struggling with school, friends and society in general. (this is from both a teacher and a parent/aunty's perspective)

Barbie - up - haven't heard anything but I miss most of these things with not watching a lot of tv etc - be nice if it was cause our "helping children with autism" sessions have just run out so we are back to paying full price every week for OT

[~Sally~]

Hello
Thought I would join in here.

Brendan was born 10 weeks early back in Feb 07, and due to his prematurity the central nervous system and parts of his brain remain under-developed. He has been 'diagnosed' with having SID as well as hyperactivity. Our paed doesn't hold much hope for Brendan growing out of it and has given him a high chance of being diagnosed with ADHD once he hits school. To add to this Brendan is developmentally delayed in all areas for his corrected age, Speech/Language being the worst (Brendan was more than 12 months behind in some areas at his 24 month corrected check).

For the time being there isn't much we can do, but make Brendan's environment safe (he has an extremely high pain threshold and mostly doesn't respond to pain) and keep up appointments with Speech Therapy and Occupational Therapy.

We did look into the carers payment approx 6 months ago, but decided we'd give it a miss as getting a dr to fill out the paperwork was going to be a nightmare.... but now that we have Brendan's developmental report from the Paed we have something to take to the GP. Should get onto that actually...
All the payment will mean for us, is an extra day per week of respite for myself. Brendan is in daycare one day per week and with the new baby's EDD approaching fast I am considering 2 days per week... but we simply cannot afford it.

We recently started Brendan on Omega 3 fish oil tablets (you cut the top off and squezze the liquid into his food) but have yet to notice any improvements... my thery is if it does help even a little great, if not no harm in trying.

Sorry starting to ramble on now

[~Saram~]

Hi Sally, nice to meet you!

My son too had an extremely high pain threshold and it used to scare me as I never knew when he was hurt! Have you tried going dairy free??? I found within a few weeks of going to soy DS was somewhat hypersensitive to pain/touch but now we have settled right down unless something if off - in fact just this week he was able to tell me he felt hot!!1 Which is the first time ever

[~Sally~]

My mum suggested we go to a naturopath, which I'm seriously considering.

I wish Brendan could tell me what he wants He just stands there whinging and crying until we can guess correctly what it is he wants...

[barbie-up]

About the helping children with autism package - Alex has been 'approved' for that, but the speech therapist he sees is still waiting on approval before she can use it for us. I don't want to start again with another one, and she's close and works with a child psych. as well (who I have to make an appointment with).

She said it has been eight weeks since they sent their application in.

Can you get OT under the ... what is it called ... the mental health care plan ?

Get onto the carers payment or allowence. Centrelink sent out SEVEN forms when I rang them about it last year. I told them I couldn't get the carers payment as I get a parenting payment, but they sent that and other forms out that I did not need. At that time, the paed. we had seen wrote 'mild ASD' on it and Alex had had a hearing test and the community health OT said he had SPD.

[~Saram~]

Barbie -up with the HCWA plan we had a LOT of phone calls to medicare. I got all the item numbers the OT had to use, they chnaged thier number - it was a long involved process and a lot of the medicare and providers don't understand the legislation very well - especially as most of the people at medicare don't understand the treatments, diagnoisis or the process that has to be completed. Keep on their backs - ring medicare and ask about the processing of your providers application.

Haven't investigated the mental health care plan yet - that is next on my to-do list :-)

[lestyrox]

if it were me I would go and talk to your GP be as open an honest as you can and explain that you are worried about his little quirks and would like to get some early intervention if there is something going on. In my experience it is better to get early intervention for a child who is quirky then wait until they are 8-9 and already really struggling with school, friends and society in general. (this is from both a teacher and a parent/aunty's perspective)

Thanks Saram, i've written a list of things to talk to the pead. about at Ethan's appointment on Monday. Its strange, now that i'm looking into the signs/traits of ASD its like i'm seeing Ethan through new eyes.. i'm seeing things now that i just put down as quirkiness but i now realise there might be more to it. Of course he's still Ethie and always will be no matter what the pead says

Perhaps with the plugs it might involve you having a toy or something and getting in his way with it, or bumping into the plugs with a big 'oh no ... they fell over' ... sorta thing. What else can you use the leaves or nut things for ? you could make one a car and interact with his plugs that way.

Thanks barbie- up, great advice I usually play along with his pretend plug games, but i'll try to be more exagerated
His plug obsession is really driving me nuts the last few days. He is CONSTANTLY talking about plugs and repeating something about plugs over and over until i repeat it
back to him. I've tried distracting him and that works sometimes but usually he'll just keep repeating over and over And he constantly wants to play with the sink, which i don't mind him doing as it makes him happy but the problem is he keeps wanting me to fill the sink up and then pull the plug out so he can watch the water go down the drain... its very frustrating as i can't get things done because he's constantly asking for 'more wawer' and having tanties because he can't reach the drain hole to put the plugs in. Ahhhhhh! I have to even sneak into the bathroom to wash my hands because if he sees me anywhere near the sink he comes racing in and wants to play with the sink. What i'm struggling with is whether or not to indulge his obsession? Do i just let him play with the sink and plugs? Or do i try and limit it? I tried not letting him play with them for 2 days and it was like his obsession doubled. Lots of tantrums and constant whinging Any suggestions?

[~Saram~]

Sorry lesty - I've forgotten how old your Ds is but we use our DS obsessions to work for us.

- if I need him to do something, go somewhere that I know he won't be comfortable we will take a pokemon book or his DS

- we make it part of his daily timetable - ie get dressed, have breakfast, put your shoes on THEN play with pokemon cards

- finish your homework then we will play pokemon

His obsession drive me bonkers for over 2 years now the only thing he wants to talk baout at pokemon/digimon/bakugan and who beats who and who evolves into who. I pick him up from school - how was school? Did you know that a grass type pokemon would beat a fire type if..... And the only time he wants to play with me is if we play "pretend mode" which is basically us acting out a pokemon battle. We have tried distrcting /trying to get him interestd in other things but it always come back to pokemon.

Good luck finding what works for you

[lestyrox]

Thanks so much everyone for your replies and support

Well i dropped Ethan off at day care today and i talked to the staff about my concerns with Ethan's behaviour. Well it seems they all noticed it too. Apparently last week he gathered up a handful of rocks and then lined them up, he'd then run around around the rocks, mess them up and then do it all again. One of the staff wanted to see what he'd do if she took the rocks away so she picked them up and apparently he got pretty upset. She gave them back and then he started the whole thing again.
There were other things they noticed too, they noticed he was great with his fine motor skills but awkward and 'floppy' with his gross motor. They didn't want to tell me because they wanted to wait a few weeks and see if it improved but since i brought it up they were keen to talk about it.
In a way i'm glad they noticed these things so now i know i'm not just being paranoid but at the same time i'm so sad because now i know that there is a big possiblility he has ASD. I know he's still the same little boy and i don't want to jump the gun and diagnose him without even seeing the doctor but i just know, i just know in my heart thats what it it. I guess i've known for 2 years really.
So i asked the staff to watch him today and let me know if they've noticed anything when i pick him up at 12:30pm. I'm really nervous for him today because its raining here so he can't go outside to play which means he'll be stuck inside with 29 kids and i don't know how he'll cope. When he was younger he used to get overwhelmed with a lot of people around. I asked the satff to call me if he gets upset and i'll pick him up early.

Anyway so i'm looking forward to his doctors appointment on Monday. I know the doctor can't diagnose him straight off but i'm at the point now where i just want to have an answer so i can educate myself to understand his needs and wants better.

I feel like i've been blind to things he does that are obvious traits of ASD. I remember reading signs and symptoms of ASD on the net and thinking 'hmmm Ethie doesn't do that, or that' but now that i've been watching him more closely i realise he has a lot of traits. These are the things i've noticed

*Obsessions that dominate his speech and play
*echolalia
*repetive speech patterns- repeats the same thing over and over (usually about his obsession with plugs and sinks)
*repeditive body movements- he'll jump twice on the spot when i repeat whatever he's saying back to him...only picked this one up a few days ago.
*Runs with his head to the side sometimes
*lines things up
*flaps his arms occassionally
*strange fears
*fixated on unusual parts of things. For example he loves Hi 5, one of the episodes had the gang pretending to be cows in a paddock and the sun was shining in the sky. Now everytime he sees or talks about Hi 5 he says 'mooooo yellow sun' over and over even if he's watching a different episode. He'll also say it at random times.

So thats where we're at. Thank you all so much for taking the time to comment and offer advice. Its nice to know i'm not alone in this.

* forgot to mention, Ethan is 3 in August*

[christy]

I've had a really hard day again...

Is it just me, or do you girls ever wander if someone else would do a better job at this than you? Today I just feel like Matilda would be better off in someone elses care....

[barbie-up]

Lest - with my son and creche - I asked them about him, when he was about 2.5 and someone from the council came out, an inclusion support officer, and they work with the carers to get the most of out his time there. That woman also suggested we see a paed.

It's hard in the beginning, when you don't know, the more you read, the more you think that's what is wrong and you can't get appointments made quick enough.

It's also hard when other mums think you are over reacting, but when there are lots of little things, they do add up to something.

Christy - no one does a good a 'job' as the mum. We're ace. I can't imagine how hard it gets.

[lestyrox]

Well Ethan had his appointment with his doctor today and he suspects he has Aspergers. He's referred us to a pead who specialises in ASD so now we just have to wait for an appointment.
I feel relieved in a way. I think getting it all out in the open has helped me come to terms with what is. The main thing now is to get a formal diagnosis (which i'm 100% the pead will diagnose ASD) so that Ethan can get into a program. i just want the best for him, i think this diagnosis will help me and DH to understand Ethie better and thats a very positive thing.
I took along a 3 page list of all the things i've noticed that are 'different' about Ethan and the Dr. has faxed that to the pead. so he can get a clear idea of Ethan's quirks.

It's hard in the beginning, when you don't know, the more you read, the more you think that's what is wrong and you can't get appointments made quick enough.

It's also hard when other mums think you are over reacting, but when there are lots of little things, they do add up to something.

Thanks Barbie- up. Thats so true. The more i read about the traits of ASD the more traits i noticed in Ethan, looking back i now realise he displays lots of traits, starting from birth really.

I think it was really good for DH to come along to the appointment today. He wasn't 100% convinced Ethan was that different. I think he was in denial and it was frustrating because everytime i'd point out an autistic thing Ethan did and DH would just shrug it off and say 'i used to do that when i was little, he's just quirky'. I think now he can really see what i've been seeing all this time. And as you said, its all the little things that added up and opened my eyes to the bigger picture.
Its interseting because the Dr. asked DH and i if we had autistic tendancies and we both do.
I have sensory issues and OCD and DH hates crowded places and used to 'space out' as a kid. Interesting.

Anyway so now we are just waiting for the appointment with the pead. As Barbie-up said, its funny how once you notice the traits you can't wait to get a diagnosis. I'm past all the umming and ahhing, now i just want to get a diagnosis and work out the best plan of action for my little man.

[~Saram~]

LR - pleased to hear you are getting some help. Hope all the appointments go well. Good luck.

Well it's school holidays and DS has had two breakdowns already - one at the beach today :-(. We have been working on his running off and at least now he stops before he completely disappears. Went to a party in a huge park on Thursday and he kept me bloody running from one end to the other - at least I am keeping fit.

Hope everyone else is doing well.

[MBP_Mum]

Hi all, sorry i have been MIA but it's been a busy few weeks.
Korbin has his speech assessment appointment tomorrow ...FINALLY!!! & $500 later He then has his first psychologist appointment on Thursday, we have three of those. I seriously think he is getting worse in some areas, and better in others.

Could every please vote for my photo of him funds will go towards the Autism Advisory and Support Service. (Page make take a bit to load)
This is a great shoot of my little man.

Thank you & i hope you are all well. ((HUGS))

[christy]

We've had such a shocker lately. M ran away from her OT on Monday, and I was in the shops and could hear her screaming and found Amanda carrying her back up the stairs to the office. I was in tears afterwards and said I saw it etc etc and Amanda put the rush on us seeing a psychologist for an assessment. I phoned one today to make the appointment from work and started crying! The psychologist got on the phone and got me in next week because she feels it is urgent to get her part of the assessment done.

So we now have a urologist appointment tomorrow (she's been incontinent all week), and a psych assessment next week, and a paediatrician appointment the week after that!! Crazy....

[MantaRay]

Christy. I am glad they got you in for the appointment so quickly. Hopefully the assessment process will work a bit better for you this time.