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Why Be Devastated

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By *rtyIan OP   Man
over a year ago

Gateway to the Beacons

I have watched a few things on TV lately regarding Autism

I have no idea how any parent can say on these TV programs how they are Devastated.

My daughter was diagnosed 16 years ago, back then the diagnosis was High Functioning Aspergers now it is all under Autism Spectrum Disorder.

Me and her have talked over an over for years and years, according to her I have F**** diagnosed Autism.

I would not change her for anything in all my life.

She is my life and always will be, bothe here and on dating sites it has been an issue but i will never put er second.

..

There is a star that shines each night

So far away yet oh so bright

That star that shines and carries dreams

On that star i send my kiss

To daddies princess that's my wish

I send you reiki everyday to help you on your way

Each morning when i hear your voice

Makes my day and heart rejoice

You are my world my special girl

I love you so much each and every curl

I know that you will always be

Daddies little princes so special to me

And as you grow and blossom

I know you will be a special awesome

You can and will fulfill your dreams

each and every one a little sunbeam

I send this poem from my heart

For you to read when we are apart

Daddies little princess my special girl

You are my life the reason why

My dreams for you they reach the sky

So just be you and we all know

So special and awesome you will grow

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex

I sometimes wonder how the child feels when they hear that. However in defence of parents if you find out that your child's life might be made more difficult by anything at all you might feel devastated for them

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By (user no longer on site)
over a year ago

Because as a parent you want your child to be perfectly healthy in every single way and not have any disability/illness in any form.

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By *agneto.Man
over a year ago

Bham

It's a worry how they'll cope when you're not around I think.

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By (user no longer on site)
over a year ago

My youngest has dyspraxia and severe learning difficulties; it's very difficult watching him struggle so badly sometimes. But he's the sweetest, most caring kid I've ever met and an absolute joy to be around.

He's been going to gymnastics classes on a weekend for a while now and has been terrified of going in the beam in case he falls and either hurts himself, or looks silly in front of his mates. I've gradually been working on his confidence with him and last week he finally did it. I've never seen a smile as big as that when he'd finished.

The hard times can be very, very hard. But the good times....... I wouldn't change him for the world

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By (user no longer on site)
over a year ago

Because the world is set up to fail them massively and the mental health and criminal justice system is filled with people that have been let down.

It is devastating to know the odds are ever going to be stacked against your kids.

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By *ranny-CrumpetWoman
over a year ago

The Town by The Cross

Parents are devastated for their child and the unknown future. They are not devastated for themselves.

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By *rHotNottsMan
over a year ago

Dubai & Nottingham

I think a feeling of hopelessness , despair, devastation, is a pretty normal response to a lot of people faced with things like this.

It’s only when you have hope you can take control and experience all that’s good.

Some people gave that capacity naturally , some gain it , others never get it

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By (user no longer on site)
over a year ago

Just because a parent says they are devastated by a diagnosis doesn't mean they dont love their child.

Life when you are ordinary can be difficult enough without the added difficulties that come with being neuro diverse.

I should imagine that their devastation come from the fact that, although they know their child is different, they hoped it was something simple that could be remedied.

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By *lephantisMan
over a year ago

Oxford


"My youngest has dyspraxia and severe learning difficulties; it's very difficult watching him struggle so badly sometimes. But he's the sweetest, most caring kid I've ever met and an absolute joy to be around.

He's been going to gymnastics classes on a weekend for a while now and has been terrified of going in the beam in case he falls and either hurts himself, or looks silly in front of his mates. I've gradually been working on his confidence with him and last week he finally did it. I've never seen a smile as big as that when he'd finished.

The hard times can be very, very hard. But the good times....... I wouldn't change him for the world "

I'm not crying. You're crying.

This is just wonderful. I identify so very much with what you say about the fear of embarrassment and shame in front of his friends with my little boy. Thank you for being a brilliant, proud, supportive Dad.

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By *rHotNottsMan
over a year ago

Dubai & Nottingham


"My youngest has dyspraxia and severe learning difficulties; it's very difficult watching him struggle so badly sometimes. But he's the sweetest, most caring kid I've ever met and an absolute joy to be around.

He's been going to gymnastics classes on a weekend for a while now and has been terrified of going in the beam in case he falls and either hurts himself, or looks silly in front of his mates. I've gradually been working on his confidence with him and last week he finally did it. I've never seen a smile as big as that when he'd finished.

The hard times can be very, very hard. But the good times....... I wouldn't change him for the world "

I think you just said it perfectly

One of my girls has suffered right since GCSE and her life is very different to how everyone expected, we’ve spent many nights in A&E together ,had some very thought provoking conversations about death! but she’s absolutely perfect too !

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By (user no longer on site)
over a year ago

One of my dearest friends has both a physical and a learning disability and though she does get upset about things she ‘can’t’ do, and worries about the future a lot (about who is going to look after her when her mum and dad are too old, I’m obviously moving in at that point) she’s wickedly funny, clever, kind and caring. Even if she can’t keep a secret to save her own life

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By (user no longer on site)
over a year ago

OP heartfelt best wishes. Beautiful poem.

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By *rtyIan OP   Man
over a year ago

Gateway to the Beacons


"Because as a parent you want your child to be perfectly healthy in every single way and not have any disability/illness in any form."

i would never change her

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By (user no longer on site)
over a year ago

Love this mate, passionate dad about his baby.

Us men are amazing parents and the power we have on out children's futures is hard to comprehend

God bless you and your daughter, thanks for sharing that , top man

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By *inky_couple2020Couple
over a year ago

North West


"It's a worry how they'll cope when you're not around I think. "

Seeing as my husband has ASD (previously described as Asperger's) and is a perfectly autonomous and functional member of society, I'd say he'll cope perfectly fine without me and he barely sees his parents and hasn't since age 18.

I think the OP might have been referring to a comment made in the Ch4 programme "The Piano", about an individual who has obviously become a perfectly functional member of society (programme described them attending uni, living away from home etc).

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By *inky_couple2020Couple
over a year ago

North West


"Because as a parent you want your child to be perfectly healthy in every single way and not have any disability/illness in any form."

Interestingly, few people are devastated when a parent is left disabled due to child bearing. "At least you have a healthy baby" is a phrase I want to tear up and shove forcibly down the gullet of the people who have uttered it to me.

But that's a slight digression from the OP.

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By *inx.x3Woman
over a year ago

Bath

My son has autism and I’m devastated about it. I always will be but that doesn’t mean I don’t love him and wouldn’t do anything and everything for him.

All autism isn’t the same … if my son could even talk to me or understand what I say I might feel like you but he can’t.

He’s nearly 10 and doesn’t say a single word, he’s double incontinent, little understanding except key words and phrases, hardly sleeps. He needs to be watched 24/7 along with a lot of other stuff I won’t bore anyone with…. It’s a world away from a individual with high functioning autism.

He’s never going to be able to live on his own, he will never be able to hold down a job. He can’t read or write. He can’t even undo buttons.

Who’s going to pay for everything he needs once he’s an adult? He will only be able to live on some piss poor benefits unless I’m there to pay for any luxury’s he needs (and I will gladly).

What has autism added to my sons life?. Sweet FA, Nothing at all…. He will forever have to depend on me and others and Who’s going to look after him when I die? When his dad dies… he will have no one and he won’t be able to look after or defend himself.

So yes I am devastated my son has autism because not every case of autism is a gift. If I could take away my sons autism I would without a doubt.

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By *lephantisMan
over a year ago

Oxford


"Because as a parent you want your child to be perfectly healthy in every single way and not have any disability/illness in any form.

Interestingly, few people are devastated when a parent is left disabled due to child bearing. "At least you have a healthy baby" is a phrase I want to tear up and shove forcibly down the gullet of the people who have uttered it to me.

But that's a slight digression from the OP."

It's not that far from this kind of attitude to the US Republican one of seeing women as incubators. I'd be tearing with you.

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By *ora the explorerWoman
over a year ago

Paradise, Herts

You have no idea how any parent can say they are/were devastated. I do. Not everyone is the same. I was. I was in bits. I totally understand why they could feel like that.

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By *ora the explorerWoman
over a year ago

Paradise, Herts


"You have no idea how any parent can say they are/were devastated. I do. Not everyone is the same. I was. I was in bits. I totally understand why they could feel like that. "

And no I wouldn’t change them for the world. I’d change the world for them though.

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By (user no longer on site)
over a year ago


"Parents are devastated for their child and the unknown future. They are not devastated for themselves. "

Afuckingmen.

Never have I agreed more with a post on here.

T

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By *ophieslutTV/TS
over a year ago

Central

Adults know how tough the world can be, even for the strongest, healthiest people. We don't like tp contemplate that it could likely be tougher for others that we love. It's unlikely to be about little other than this, at its core.

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By (user no longer on site)
over a year ago


"You have no idea how any parent can say they are/were devastated. I do. Not everyone is the same. I was. I was in bits. I totally understand why they could feel like that.

And no I wouldn’t change them for the world. I’d change the world for them though. "

This. My son is "high functioning". I wasn't devastated when he was first diagnosed as I assumed that because he's bright, curious, kind, that I'm also autistic, because he has a loving, understanding, supportive family he'd be able to flourish. However, as he became a teenager his social challenges away from the home have caused him to feel crippling anxiety and suicidal thoughts daily. He feels different, isolated and disconnected, and absolutely exhausted from masking. I am devastated for him. I'd never wish that much pain on anyone let alone my own child.

Nell

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By *etcplCouple
over a year ago

Gapping Fanny

Knowing that they will likely end up on a swingers site looking for love maybe?

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By *wisted999Man
over a year ago

North Bucks

My Dad was not devastated but upset and withdrawn over my diagnosis.

He feels a lot of regret over leaving me at a young age and that was the icing on the cake.

He’s much better now. I understand how he must feel which is unusual in itself for me.

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By *icassolifelikeMan
over a year ago

Luton

I have to admit we’re doing loads to counter the fixed mindset some have to neurodivergent people.

Everyone has a part to play.

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By *lephantisMan
over a year ago

Oxford


"You have no idea how any parent can say they are/were devastated. I do. Not everyone is the same. I was. I was in bits. I totally understand why they could feel like that.

And no I wouldn’t change them for the world. I’d change the world for them though. "

I 100% agree with this, and I'm so sorry the world has deliberately been turned into such a brutal place for anyone with needs slightly beyond the absolute bare minimum.

When Hobbes wrote that life was 'nasty, brutish, and short', he was describing, somewhat hyperbolically, the reality of a pre-industrial world without an understanding of germ theory or antiobiotics or pain relief. Too many modern conservatives take that bleak description as a prescription...as if any sort of kindness and generosity is weakness.

We have more than enough wealthnand knowledge to allow all people, whatever their needs, to live in dignity and respect. That we refuse to do so is a result of political choices, and I loathe it.

I really hope your child finds their people, their support and love and understanding. They'll know it when they find it, because you'll have been showing them all their lives.

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By *ohn KanakaMan
over a year ago

Not all that North of North London

I wouldn't wish the problems autism has caused me on anyone. I'm fiercely proud of being autistic and I'm a huge advocate of autism but living in a neurotypical world is not easy for me.

So I get why a patent would be devastated to hear that a child has a diagnosis of an incurable, largely untreatable condition that will make many aspects of their life more difficult.

Also as an initial response, there are so many misconceptions around autism, as an initial reaction it's hardly surprising

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