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Unread 24 Jun 19, 04:49 PM  
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#17
nadya
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Originally Posted by alkel2730 View Post
It is downright offensive, dismissive and smacks of someone with extremely little understanding or education of the condition.

I say this as a mother of a child with suspected autism and who has spent all afternoon on the phone to a team of therapists and specialists talking about coping mechanisms. I say this as a mother who went out and studied autism so now I have a qualification in the condition. I say this as a mother who is paying for private help for my child and working two jobs to do this. And I say this as a mother who despite all this still has a child who regularly meltsdown with sensory overload.

I do hope I misread it.
Yes I agree,I have done years of my own research into autism,been to every seminar I could get to,every charity and parenting group associated with it ,paid for private help and learnt a raft of techniques and strategies and they still have difficulties as I would expect.Its very hard and the thought that I'm just not bothered is upsetting,I couldn't care or try more than I do its exhausting,but worth every moment for my boys.
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Unread 24 Jun 19, 05:18 PM  
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#18
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Originally Posted by alkel2730 View Post
So essentially unless someone is mute to you their autism is not really a thing? Just bad parenting allowing their kids to meltdown and not learn better coping mechanisms?
Not at all I was trying to explain how it was viewed when my brother was growing up, did I say I accept this to be the only possible form of autism?, no!

We went through years of pleading for help and even saw my brother in trouble with the authorities as an adult due to his meltdowns. But there was no care at all back then.

Im fully aware of how difficult it is to get assistance now, so imagine how it was then with no services at all and being told he was just naughty.
But thats a discussion for a different thread.

My point was that others are seeing the lanyard as a facility only for children specifically with autism when it isnt.

No disability hidden or not, severe or not deserves questioning by others over the eligibility for assistance.
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Unread 24 Jun 19, 05:23 PM  
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#19
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Originally Posted by THOscar View Post
I think you're completely misunderstanding the poster there.
Thank you, what I have said has obviously been misconstrued.
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Unread 24 Jun 19, 05:33 PM  
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#20
alkel2730
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Originally Posted by TeeKayDawn View Post
Not at all I was trying to explain how it was viewed when my brother was growing up, did I say I accept this to be the only possible form of autism?, no!

We went through years of pleading for help and even saw my brother in trouble with the authorities as an adult due to his meltdowns. But there was no care at all back then.

Im fully aware of how difficult it is to get assistance now, so imagine how it was then with no services at all and being told he was just naughty.
Thank you for explaining. Your post wasnt clear and I am relieved I read it wrong and hold my hands up to that and apologise.

It is impossible to accurately judge from a distance why a child is having a meltdown, no one has any idea bar that child and their parents. I feel strongly over changing perceptions of autism and getting the right help at the right time. I am thankful that things are changing, people are becoming more educated and attitudes are shifting but we are a long, long way away from where we need to be and judgemental opinions are not well received.

I am pleased that you have been involved in your brothers fight and I hope that your brother is getting the help he needs and deserves now.

I loath derailing threads so I will step out now but if you would like to discuss further please do feel free to PM me.
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Unread 24 Jun 19, 05:42 PM  
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#21
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Originally Posted by alkel2730 View Post
It is downright offensive, dismissive and smacks of someone with extremely little understanding or education of the condition.

I say this as a mother of a child with suspected autism and who has spent all afternoon on the phone to a team of therapists and specialists talking about coping mechanisms. I say this as a mother who went out and studied autism so now I have a qualification in the condition. I say this as a mother who is paying for private help for my child and working two jobs to do this. And I say this as a mother who despite all this still has a child who regularly meltsdown with sensory overload.

I do hope I misread it.
Im sorry but you have taken one element of my post to turn this into something it was not, and not intended and for that I apologise.

I have lots of understanding of the condition thank you.

The stress was so much the parents (different dad) split up as a result and father wasnt interested.

Mum has only just found happiness with a partner in her 70s because partners post his dad couldnt cope.

I also said coping mechanisms worked depending on severity which I thought would be clear enough to indicate it would not be helpful in ALL cases.

But then maybe as I have a lack of knowledge, I dont have an understanding of the spectrum, ranging from mild (learning difficulties) through the behavioural with/without sensory through to the severe which was the mute I referred to originally - and as I said was the only accepted form of autism when my brother was young, therefore no diagnosis until his 40s!
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Unread 24 Jun 19, 06:21 PM  
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#22
alkel2730
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Originally Posted by TeeKayDawn View Post
Im sorry but you have taken one element of my post to turn this into something it was not, and not intended and for that I apologise.

I have lots of understanding of the condition thank you.

The stress was so much the parents (different dad) split up as a result and father wasnt interested.

Mum has only just found happiness with a partner in her 70s because partners post his dad couldnt cope.

I also said coping mechanisms worked depending on severity which I thought would be clear enough to indicate it would not be helpful in ALL cases.

But then maybe as I have a lack of knowledge, I dont have an understanding of the spectrum, ranging from mild (learning difficulties) through the behavioural with/without sensory through to the severe which was the mute I referred to originally - and as I said was the only accepted form of autism when my brother was young, therefore no diagnosis until his 40s!
Its for all the reasons here why things need to change. Im sure your mum had countless judge-y eyes looking at her and assessing her bad parenting when your brother had a meltdown, the confusion and pressure she felt knowing something wasnt right but not having a clear path to help. The disagreements with her partner at the time due to the unrelenting worry about her child. The guilt, the worry over the future, the daily sharp learning curves, the weirdness of it all. The never ending judgement.

I completely agree with you, there isnt one pot of disability labels that are passed out to everyone and when theyve run out theyre gone. Thats what makes disability so complex I guess.
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1st trip: 1985 - Travel Inn. 13 further trips as a child.
2003 & 2007 - June and May Homewood Suite I drive.
2009 - Sept Animal Kingdom Lodge
2011 - May/June Disneymoon trip! BWV & AKL.
2012 - Sept The 'anniversary trip' SSR.
2013 - October the bonus trip to POR
2015 - 20th trip!September WLV first trip with DD!
2017 - Sept Poly first trip with two toddlers!
2018 - May AKV & POR the last before school trip.
2019 - May SSR & Kidani
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Unread 25 Jun 19, 07:22 AM  
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#23
gismo1554
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Originally Posted by Gill H View Post
Sorry if I am being thick - I dont have any personal experience of this. What do the lanyards achieve? I thought they were for those who needed a calmer environment (eg autism) or with something like Crohns where you might need to leave the queue to use the loo urgently. I didnt realise they included those who might need mobility assistance too?

I have always prebooked mobility assistance on trains for my parents. My dad is 87 and cant walk long distances or stand for a long time. He doesnt normally use a chair or scooter. However, at the station he is met by a man driving a little buggy who takes him to the special waiting room, then to the train.

Is that not more helpful for the OPs situation? I know airports do the same but you have to pre book.
Just to answer your question, the lanyards are for any hidden disability and are just a way to make people aware you might need extra assistance. Booking the extra assistance is still the best way to ensure you get it. I am registered blind and use the lanyard as I have enough vision to get around on my own but often mis-steps and small things around my feet (and yes that includes children) so it at least lets people know I'm not just an ≈≈≈≈. Although I do use a white cane if its a busy area or a new area I still don't like using it 24/7 so especially at airports I find the lanyard is a great way to just flag I might need assistance.

Hopefully the original poster has made it safely to Orlando and has booked assistance for the return journey at least.
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Unread 25 Jun 19, 08:46 AM  
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#24
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Lanyards exist to promote consideration, explanation and understanding why someone who "looks normal" might be acting weird, moving slow, talking ≈≈≈≈≈, suddenly needing to sit down or rush to a loo or whatever else would be considered "abnormal" for the majority of us.

If you need special assistance like a wheelchair, help through security, boarding first/last, a buggy etc then you must still ask for it from the airport and from the airline.

No one NEEDs a lanyard for anything. So if you cant get one, dont fret just be sure to ask for the help you need and you will get it no problem at all.


as a side note, if anyone has ever actually taught their ASD kid a coping strategy that they themselves have witnessed the child using then please tell em the secret! hehe I cant teach my 11 year old ASD to brush his teeth every day let alone the 5 point scale or how to know he is anxious! lol
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