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Old 18.09.2014, 14:16
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DS Autistic Spectrum disorder

Hello to everybody,
So, they suspect autistic disorder as well as I do and soon my 2,5 y.o. son would be labeled. I know it is not the end of the world, sometimes things happen which are far more complicated, but still it is hard to accept.
What really scares me is what kind of life he would have with this kind of DS and how can the parents help.
At the moment we have a logopedist and a developmental teacher who come to our house 2 times per week.
Are there any Montessori kindergartens in Zurich area who accept kids with autism?
Are there any families with kids who meet with each other so that the kids can play together?
I found it is difficult to spend time at the playgrounds with normal kids, cause my boy pushes them constantly.
Thank you.
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Old 18.09.2014, 15:14
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Re: DS Autistic Spectrum disorder

Niceyes, You are going through the worst, the darkest days. And no, there is little that can be worse than being told that your child has a lifelong disability that is incurable so don't be surprised that this feels so bad. Its totally understandable to feel how you do. but it's all back up the hill from now. Things will just get better and better, he will improve (he will not be stuck in a permanent loop of pushing kids over in the playground I promise!) and you will become a super parent and be able to deal with any hiccups which at the moment may make you feel paralysed. Trust me - because I was you 4 years ago.

Our son was finally diagnosed when he turned 3. It took a little while to get everything in order but at just 4 he entered into a wonderful therapy centre and his progress has been rapid and incredible. You are doing the absolute best you can for him. From the diagnosis so many services and therapies will become available to him and to you and you will find exactly the right place where he can grow and flourish to be the wonderful little person you know he can be. And you will cope. Because that's what we do.

Now for the practical stuff ...


Www.autismus.ch - brilliant brilliant organisation with so much information

http://www.proinfirmis.ch/de/kantona...e/zuerich.html - fantastic help with getting the disability insurance forms filled in, including the all important disability carer allowance which will enable you to get this :-

https://www.srk-zuerich.ch/srk/index.php. - help to set up a respite carer (plus financial aid) meaning that you can enjoy a night out with your OH or take your other kid to the cinema etc ...

http://www.sternschnuppe.ch/home/. wonderful charity that gift days out to ill/disabled children and their parents. We have visited the transport museum again and again and again and again ....

Yahoo groups have a special needs kids group for CH - search for special-kids-ch
- English speaking group full of lots of parents who have been through what you are experiencing and are there to help or just listen to you moan.

Www.allspecialkids.ch - Geneva based organisation supporting expat families with children with special needs but they have a coffee/play outreach group based in Zurich who meet roughly once a month.

As for me, happy to meet up with you and your playground terror any time - I'll bring my own playground terror along!!! Infact, I'm about to hop on a train to Zurich now for a meeting about autistic kids and school provision. If you are in Zurich mainline station for 5pm, pm me and we can meet for a quick chat this afternoon (and a hug and chocolate or even wine .. Trust me, it helps).

You are not alone. How you feel is normal. It can only get better from now on.

Many hugs especially to your lovely son
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Old 18.09.2014, 15:48
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Re: DS Autistic Spectrum disorder

Thank you, ECB.
I emailed you a PM.
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Old 18.09.2014, 21:40
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Re: DS Autistic Spectrum disorder

It was a real pleasure to meet Niceeyes this evening and finding we have so much in common, we have arranged for our families to meet up soon.

Another EF success.
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Old 15.12.2014, 03:05
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Re: DS Autistic Spectrum disorder

Just wanted to say how I am pissed off of all those rigid, arrogant, non professional and super expensive people who call themselves swiss pediatricians.
They have a perfectly killing approach towards autistic kids like oh, your kid is soooo young, let's wait bla bla bla ...
So, we found USA professionals who give us hope that yes, they can teach kids to speak. The Americans say that it is so common here to have a non verbal child and to WAIT UNTIL he is 6 years.
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Old 15.12.2014, 10:14
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Re: DS Autistic Spectrum disorder

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Just wanted to say how I am pissed off of all those rigid, arrogant, non professional and super expensive people who call themselves swiss pediatricians.
They have a perfectly killing approach towards autistic kids like oh, your kid is soooo young, let's wait bla bla bla ...
So, we found USA professionals who give us hope that yes, they can teach kids to speak. The Americans say that it is so common here to have a non verbal child and to WAIT UNTIL he is 6 years.
Well said. Bears repeating. Over and over and over again.

Waited a whole year on the bad advice of our pediatrician and bitterly bitterly regret it. Our son only started getting help at the age of three when it was quite clear to anyone with a mild smattering of knowledge in the area that from 18 -24 months his symptoms were sufficiently evident to require intervention.

Early intervention is paramount. This time can never be got back. I do hope very few people - even none of you - reading this ever need this advice but I cannot stress it enough - if you have concerns, collate your evidence and push forward to finding an answer - with the best answer being "nothing wrong at all". Do not sit back and wait.

ECB (who is putting bits and pieces together in a bag in readiness for a trip to Lausanne today with the boy to consult a new paediatric pyschiatrist and a neurologist specialised in autism treatment as she types - fingers crossed).
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Old 30.01.2015, 12:05
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Re: DS Autistic Spectrum disorder

Mine wonderful experience this week was to realize how efficient the ABA - therapy is. I hope one day the swiss professionals will understand the importance of early intervention and that will change the lives of kids with autism and their parents.
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Old 30.01.2015, 15:56
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Re: DS Autistic Spectrum disorder

I just noticed your posts, and am glad to hear you have some support...

Did you get a referral to the 'KJPD' in Zurich. They have a specialist Autism diagnosis unit.

Did you get an answer on the autism and Montessori question? I know/work with Montessori schools and could make suggestions, but it will definitely be a case-by-case basis, and whether the school has space and the right support systems (if it was my child I would be very fussy about which environment and the qualifications and experience of the individual staff who will be working with my child)...

Yes, ABA therapy has lots to offer. Although my impression is that it is not 'wholistic' and relies heavily on intensive (and very expensive) 1:1 therapy.

If your child has a substantial language delay, they should qualify for 'logopedy' and if they were born in Switzerland or have a C permit, you should also look at the support services for IV (disability insurance)..

Good luck with your search! I also have children with complex needs... It can be very exhausting!
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Old 30.01.2015, 17:53
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Re: DS Autistic Spectrum disorder

Dear Swisspea,
Thank you.
yes, after waiting for 6 month we have an appointment with Dr Gundelfinger team, who will confirm that my child is on the spectrum.
Today the Swiss lady ( logopedin) came and she just sat and the played on the ipad with my son for an hour.
Sorry, I can't really fight with the system. Once I tried to talk with her about the advantages of other teaching methods like ABA therapy - the answer was that this is for dog's training. No comments
So, we are waiting for the official diagnosis and let's see what they can offer us :-).
Talking about ABA - therapy. You know, it is like day and night - if you compare the swiss methods ( I doubt that playing on the ipad is a method ) and what Americans do.
I can see how my boy changes and I can see that he can actually pay attention to my words and what I ask him to do.
And what really funny is that swiss logopädin and heilpädagogische Fruherzieherin think that being autistic means being retarded.
I have no doubt that American professionals that we hired ( and yeah, they are VERY expensive) are real PROFESSIONALS.
At least, there is somebody who can and IS helping my son.
thanks for the information about IV.
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Old 30.01.2015, 18:13
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Re: DS Autistic Spectrum disorder

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Yes, ABA therapy has lots to offer. Although my impression is that it is not 'wholistic' and relies heavily on intensive (and very expensive) 1:1 therapy
And truly, who cares about the money if it is your child's future that you have to save ...
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Old 30.01.2015, 18:24
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Re: DS Autistic Spectrum disorder

I agree...and Montessori is going to be super-expensive too..in Zurich, unless you can convince the authorities to pay for it. Also, the child needs to begin from age 3-4.... My experience, even with 'professionals' is that you also need 'specialists' for whatever disability your child has... My husband is Montessori trained 6-12 and also has 4-5 years experience doing 1:1 or special support for a teenager who had moderate-severe autism and was non-verbal. This was in Australia.... And up until my husband started to work with the autism specialists, no one had ever thought to use picture-cards and sign language with this child... Who by then was mostly controlled with food (big problem!) and has enormous temper tantrums...and he was twice the weight of his mum....

If you see great improvement with ABA that is great. However, I have a friend who was trained as an ABA therapist, and it's important to also take a wholistic view and look at social interaction and independence skills as well as communication...

I have worked in the Montessori schools in Zurich now for 5-6 years and two of my former colleagues who did their first teaching experiences with us, are both now on the path to become 'Heilpedagogue' qualified...and I know both will make an enormous difference for the children and families they work with...
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Old 12.02.2015, 19:29
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Re: DS Autistic Spectrum disorder

[mod edit - email text removed at user's request]

This email I received today from GURU of autism here in Zurich. Ok. Just wondering how could this nation built an effective economy out of nothing, be leaders in different fields, and at the same time be so rigid , having a tunnel vision. Too much cheese eating in their mountains. Rant over.

Last edited by 3Wishes; 13.02.2015 at 10:19. Reason: removed email
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Old 12.02.2015, 22:01
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Re: DS Autistic Spectrum disorder

Don't burn out too soon - you have a whole lifetime ahead of you!

In the meantime, the vast majority of responsibility and role falls to you, the parent. No one is going to take over you and your child's life, and do it for you (and nor should they, I think, the times for insitutionalisation and social services taking over the decision making from parents, ought to be well-over)....

Now, the choice, do you fight your own battles, for your child's individual needs, or do you join the 'chorus' or take on a crusade ?

My mum would say (and I think this is wise advice that has served me well) - "you are your child's best advocate"...

Plus, every Autistic kid is unique. No two are the same... nor are two parents or families...so what you need/want/desire/lack at this point, is unique to you...

Maybe this will help, maybe it's not what you want to hear, but I read this today:

http://www.independent.co.uk/voices/...-10029318.html

Can I ask that you remove the email text ? It's personal and although you have removed the identifying information, it's quite unprofessional to have it copied publicly and it probably will not achieve anything, especially as the person who wrote it is probably your best advocate other than yourself for the needs of your child...
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Old 12.02.2015, 22:30
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Re: DS Autistic Spectrum disorder

I think you may be about to experience something very special.

Some of the biggest achievements in history have been done by people with Autism.

I refuse to view this as negative. Quite the opposite actualy. OK you have much work to do but trust me this one will be a labour of love.

Stay with it Niceeyes and I guarrantee that you will be amazed at the abilities of your Autistic child.

As the song goes.... "Dont give up, you have friends".
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Old 12.02.2015, 23:03
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I do not want my son to be the second Einstein. I just want to hear MUMMY out of him.
You know, it is very painful when you can't hear your child's voice.

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Can I ask that you remove the email text ? It's personal and although you have removed the identifying information, it's quite unprofessional to have it copied publicly and it probably will not achieve anything, especially as the person who wrote it is probably your best advocate other than yourself for the needs of your child...
Oh yes, I will remove the email text because it is SOOOOO personal and even if I removed the ID info.

DEAREST SWISS PEA,

Do you really understand the pain I feel every single minute, that , being myself a doctor , was not strong enough 2 years ago to convince the pediatrician, that my son HAS autism ?
Here you have the desperate situation , when first they tell you oh no, your child is not autistic, then in a year they suggest that your child has a BRAIN TUMOR, you somehow trying to survive, after they say oh, you are lucky we were able to meet you and diagnose your child before he is 3 y.o.
And then you desperately search for ABA specialists, your husband works 12 hours per day so that you are able to pay.
And these people, who are supposed to be PROFESSIONALS, do know about the advantages of early intervention, but doing nothing.
it is a rigid system with tunnel vision on every level.

Last edited by 3Wishes; 12.02.2015 at 23:25. Reason: merging successive posts
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Old 12.02.2015, 23:32
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Re: DS Autistic Spectrum disorder

That is OK. Just be angry at everyone who tries to help...that will work...and whilst you are there, in that angry place, you will find a magic cure for autism...
Geez...
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Old 13.02.2015, 00:04
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Re: DS Autistic Spectrum disorder

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I do not want my son to be the second Einstein. I just want to hear MUMMY out of him.
You know, it is very painful when you can't hear your child's voice.


Oh yes, I will remove the email text because it is SOOOOO personal and even if I removed the ID info.

DEAREST SWISS PEA,

Do you really understand the pain I feel every single minute, that , being myself a doctor , was not strong enough 2 years ago to convince the pediatrician, that my son HAS autism ?
Here you have the desperate situation , when first they tell you oh no, your child is not autistic, then in a year they suggest that your child has a BRAIN TUMOR, you somehow trying to survive, after they say oh, you are lucky we were able to meet you and diagnose your child before he is 3 y.o.
And then you desperately search for ABA specialists, your husband works 12 hours per day so that you are able to pay.
And these people, who are supposed to be PROFESSIONALS, do know about the advantages of early intervention, but doing nothing.
it is a rigid system with tunnel vision on every level.
Geesh - I don't think swisspea - who has been very helpful in this thread of yours - is the right person to rant at (if there indeed is a person who it'd be justified to rant at). Your situation isn't good, you're disappointed, but the text of the e-mail just states the reality surrounding your kid's situation in a nice and neutral way. Why do you feel the need to get pissed at swisspea for pointing out that copy-pasting an e-mail word for word (only blanking out names) isn't OK? Your being annoyed at the system surrounding treatment of autism in CH doesn't merit that. Look at it this way - would you like it if someone pasted an e-mail of yours - any e-mail - on the world wide web, just blanking out your name, and ranting about it? I'd guess not. So, even if it's hard, chill out and do something relaxing before returning to this subject please.
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Old 13.02.2015, 09:38
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Re: DS Autistic Spectrum disorder

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I do not want my son to be the second Einstein. I just want to hear MUMMY out of him.
You know, it is very painful when you can't hear your child's voice.
Few years ago, I worked with a 4 yrs old boy with Autism, he was diagnosed when he was about 3, he wouldn't speak a word when he was diagnosed, he had a therapist, before me, every day, for 8 hrs a day (with breaks during the day), and after a few months , he started talking. They were using ABA. This was in my country (eastern european country) but I don't think that here you can have a therapist for a full day just for your child.
Don't give up. You need to have a lot of patience...

Last edited by princessduck; 13.02.2015 at 10:12.
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Old 13.02.2015, 10:00
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Re: DS Autistic Spectrum disorder

Not sure about provisions in Switzerland, but France is still in the dark ages where ASD is concerned. It's regarded as the province of psychoanalysts, and of course those kinds of professionals don't like to let go. Interesting BBC article here.
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Old 13.02.2015, 10:09
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Re: DS Autistic Spectrum disorder

I can understand that it's difficult for you, i would also find it terribly difficult if i couldn't hear my 4 year old every morning, although i quite often spout rubbish to the contrary at 07.00hrs every day.

I'm not sure continually knocking the Swiss system will actually bring you any benefit as people who may be able to help, won't because the doctor is Swiss and therefore according to you, stuck in the dark ages, which may or may not be true.

It is very difficult to generalise with any accuracy.

The Swiss medical system does have it's good points, they are quite good at orthopedic surgery, something due to the amount of skiing accidents i imagine. I have had some very cutting edge surgery (no pun intended)

What you also need to think about, the US is 300mio people, here we are only 8 mio people so the problem is less widespread than in the US and forcibly there are far less people who can treat it and the ones who do, may not be keyed us as somebody who does this ona far more regular basis.

You have moved here and you're getting treatment that you feel is not good enough or up to date enough. You say you are a Doctor, so maybe consider moving to somewhere where you can find the treatment you want, surely as a Doctor finding a job shouldn't be a barrier.....

By continuing with your attitude towards people who genuinely want to help you, Swisspea, you will only alianate yourself. Swisspea is really the wrong person you need to wind up if you want any help at all.....you owe her an apology.
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