#autismisaDIFFability

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amother

Orchid

Wed, Oct 18 2017, 4:15 pm

You would take it away in a minute.

Oh the the minutes, the hours, the days, the weeks I SCREAM, I BEG

***please take it away!***

This week has been one of them.

But it doesn't help. Because it won't go away. It is pointless. Like begging Hashem to make the earth turn slower so that the days are longer. Or to bring back a dead relative to life.

SOMETIMES, what I am writing does help.

Amother with the HFA child who was so smart at school you thought it would carry him through- I do get it, because I WAS THAT KID. Except without a diagnosis, because there were less in those days, especially for girls.

I was so smart! And dorky. Where live they did IQ tests in those days. When I did the 3rd Grade 3 IQ test, I did so well they made me come back and do an extra test. It was the 6th Grade IQ test? How do I know? Because when I did it again in 6th Grade - I remembered the questions.

Then as an adult, it has also taken a long time to "get it together". Everyone was thinking - how come she just..... Can't?

Autism is forever.

We can't take it away.

So let's help each other!

I'm so smart at some things. Let me help you without judging you. You are so smart at other things. Please help me without judging me.

Let the world appreciate what people with autism have to give. Both high and low functioning. Together we can play G-d's magnificent symphony of life.

#autismisaDIFFability

amother

Ivory

Wed, Oct 18 2017, 4:26 pm

I wonder sometimes what happens to those with autism and ADHD when Mashiach comes, assuming the idea that all illnesses and disabilities are cured. Who will they be? Will I recognize my own kids? Their personalities? Because so much of who all of us are is connected to what comes easily to us and what is more difficult.

I stick with the clinical criteria for disabilities and mental illnesses- how severely does it impact/restrict your life? My HFA daughter is both different and disabled. She is proud of the difference- for example, how she thinks, her lack of overfocus on the trivial ; the disability is crushing for her- the lack of executive functioning skills, the social issues (She's also in college- we should all compare notes.)

Also anon strictly because it's not mine to share.

amother

Smokey

Wed, Oct 18 2017, 4:30 pm

As a parent of a child with autism, I disagree. My daughter has severe intellectual disability and sensory issues that barely allow her to function. Her seizures are daily and severe.
It's a disability.

studying_torah

Wed, Oct 18 2017, 4:40 pm

I can hear both sides of the arguments- some mothers of autistic children don't support looking for an autism cure, they say to support their differently abled children. Others wish for a cure, or a magic way to erase it; most probably those with very low functioning, non verbal, or violent children.
Autism has a huge spectrum of functioning and different people view it differently, diff people are impacted in vastly different ways, and that is ok.
Op you might feel that you are differently abled, that does not mean there are no severely disabled autistic children/people, and that it is ok for ppl to wish it was not this way.
Please see both sides of the discussion, op.

amother

Orchid

Wed, Oct 18 2017, 5:03 pm

I see both sides.
I live both sides.
The other side is so depressing I chose not to write about it now.

I include "low functioning" people I believe that they ARE functioning in a way we do not understand.

Did anyone click on the link to the Carly Fleischer video?

***THIS NEXT BIT IS VERY IMPORTANT***

For Ruchel
For others

One of my kids has a lot of problems with losing games at the moment. It is something we are working on. I try to help him learn - if you play the right game, you can always win. You think you are playing ludo. If you lose, you lose! That's sad. But you know what? That's not the real game. The real game is called "I can lose a game and not throw a tantrum". If you are playing that game- you can win EVERY time. Well- not EVERY time, because you are human, and humans, although perfectly created by Hashem, are not perfect in what they think, say and do. But they are a work in progress. You can grow and work towards winning every time. Losing the game, keeping your cool. That is your job right now. That's your real game.

Life is a game. But a lot of the time, like my son, we are concentrating on the wrong game! It's not
Did we do well in school?
Did we get married?
Did we have children?
Did we make lots of money?
Did our children give us nachat?
Did we buy nice clothes?
Did we keep up with the latest fashion?
Did we collect lots of...
Books?
Chatschkes?
Friends?

These are not the games we are really playing! Like ludo - these things are not up to us! They are determined by the dice Hashem rolls for us!

What is the game????

Did we serve Hashem to the best of our abilities? Did we help others to do so? Did we try to know Him? To connect to Him? Did we humbly accept the dice He rolled for us? Or did we have a tantrum because we felt like we had "lost"?

That is the only game we are really playing.

Autism IS a disability if you are playing the wrong game. But in Hashem's REAL game for us - it's just part of the dice. Often a set of dice that are sharp. And cut our hands. Or hot, and burn our fingers. We drop them on our knee, and oi! it hurts even more. Sometimes the opponent hurls them at our face...

But that is not the game. It's the dice of the game of "how do we respond?"

And do you see- without my son I would not have learned this lesson!

#autismisaDIFFability

amother

Teal

Wed, Oct 18 2017, 5:09 pm

For those wishing for a magic cure, there are many doctors that successfully treat/cure autism. Not magic, a lot of hard work, but it has been done.

https://www.bockintegrative.com/what-we-do/

https://www.aimintegrativemedicine.com/

https://www.rossignolmedicalcenter.com/

studying_torah

Wed, Oct 18 2017, 5:16 pm

What your saying sounds very nice, but I think that you are oversimplifying it, sorry.
The autistic, or other very disabled children or adults are not functioning at all, or very minorly. It is not playing the wrong game to wish for a cure.
I think you suffer from black and white thinking and need to realize that ppl who don't have your view are not wrong, and are not serving Hashem improperly. Sorry, I found your last post extremely offensive. Comparing looking for a cure to having a tantrum?
Saying living life is playing a game? etc

amother

Jetblack

Wed, Oct 18 2017, 5:20 pm

And I'm finding your post pretty offensive.
"you suffer from black and white thinking"? Huh??
(Not OP)

amother

Orchid

Wed, Oct 18 2017, 5:21 pm

Of course I have black and white thinking! Thank you for reminding me.

And the world is shades of...

Color.

And looking for a cure is NOT wrong! It's great!!!!!!!

But in the meantime...

You don't know what amazing good that flapping tantruming kid is doing for this world.

So help them! Yes! But please don't judge them!

And I am very very very sorry that you were offended.

#autismisaDIFFability

amother

Jetblack

Wed, Oct 18 2017, 5:23 pm

OP I'd really love to talk to you IRL.
Any chance you'd say which area you live?

amother

Aqua

Wed, Oct 18 2017, 5:36 pm

amother wrote:

But of course. I'm not there yet either. If I could do it wholeheartedly I would not need to vent.

But please - learn from Dudu Sela (who refused to complete a tennis match that would go into Yom Kippur. Afterwards he was asked if he was now going to be completely observant). He did not say "לא" (no). He said "עוד לא " (not yet).

You don't understand how much pain I'm in. Autism ruined my life. I'm not autistic but I had trouble because my parents neglected me and I was diagnosed with ASD and PDD by people to try and explain why I wasnt up to par.

So I live in this weird reality where I'm not actually autistic but I KNOW WHAT IT FEELS LIKE. And I hated it. Being put down, lied to, not trusted, not respected, people telling me I was not capable because I was disabled.

I was hurt and I hurt till the day. I struggled so much. I wanted to die and kil myself. For years I lived in between reality and fantasy. I did not know who to trust, I did not know if I was truly autistic or not but I wanted to be anything but that.

So I read. I read 1000 page books on aspergers abd autism. I studied and committed myself to changing any flaw I saw in me that matched up with the books and the articles. If I could do that... Then I'd my normal. Right?

Autistic meant I was disabled. It meant I was different and stupid. It meant I was less than. It meant I was not deserving of life because all I did was make mistakes and hurt people and be idiotic with my lack of tact. I didn't want to hurt people.

I finally learned my true value in my late teens from some wonderful people. But to this day I cannot look, talk or be near autistic or special needs kids. Because I see myself in them and that little girl who wanted to die and then I get angry that all these people have to suffer and I begin to hate them for being alive and.... Yeah.

Maybe this will change. I'm not sure, it's in my brain.

amother

Amethyst

Wed, Oct 18 2017, 6:07 pm

studying_torah wrote:

If anything is offensive, it is this post.
OP's writing is actually pulling at my heart. I'm not sure how you could have responded so hardheartedly to her.

amother

Gray

Wed, Oct 18 2017, 6:11 pm

I havent read the whole thread. Its much to long. But I read ops. And the title. I work with children with autism. Theyr all different. But they are such incredible children each in their own right. I value every day I work with them. They teach me so many new things.

chavs

Wed, Oct 18 2017, 6:14 pm

Ok I'm gonna comment even though I wasn't going to.
It's not black and white, good or bad, or disabled meaning all bad.
Having asd presents with difficulties for most ppl, however few or many difficulties/ struggles that is. For many, a lot of their difficulties come as a result of ppl not accepting that not everyone is the same.

On the flip side seeing asd as a disability to cure is in my experience, not because oof compassion for the person with asd but because it makes you uncomfortable.
Asd comes with beauty as well as difficulties and by beauty I don't mean "rain man " although there's that too, but I mean ppl who see things slightly different, look outside the box, ppl who think deeper, feel deeper and many who do have the potential as a result to make the world a better place.

I've got two kids on the spectrum, we've had lots of pain, intense anxiety, sadness, and it's awful to see your child hurt. Otoh, the reason they hurt is because they think and feel more and I see their beauty, to me it's a disability and a huge ability.
I wouldn't change them for the world but see it as my duty to help them cope with the difficulties that their intense feelings etc give them.
It's not black and white, they do struggle but their autism isn't something sad, it's something we celebrate and embrace. It's part of them. The difficulties as a result is something that we are trying to help them with by teaching them various coping skills. Including learning how to deal with anger, change and accepting themselves as they are. Learning to accept and adapt to situations and much more that frankly most ppl could do with learning.

Last edited by chavs on Wed, Oct 18 2017, 6:33 pm; edited 1 time in total

amother

Orchid

Wed, Oct 18 2017, 6:26 pm

InnerMe, amethyst, gray and Chavs-

Thank you thank you thank you for your posts!!!!!!!

#autismisaDIFFability

amother

Orchid

Wed, Oct 18 2017, 6:57 pm

amother wrote:

OP I'd really love to talk to you IRL.
Any chance you'd say which area you live?

Thanks for this ?compliment?

I don't know. I'm quite a private person. Let me think about it.

Maybe I live on another planet lol

#autismisaDIFFability

amother

Orchid

Wed, Oct 18 2017, 6:59 pm

Aqua I an crying for your pain. And for the pain of those that you wish were not alive...

I can relate to what you write. I have no official diagnosis. I have never sought one. But I know what it feels like.

Sending you hugs.

#autismisaDIFFability

studying_torah

Wed, Oct 18 2017, 7:03 pm

I'm not saying autism is black & white, I am saying op's thinking is. Her posts sound to me like she is saying that anyone who doesn't believe how she does/ sees 'autism as a disability is playing the wrong game' or is 'tantruming' .
Those are very offensive things to say.

amother

Orchid

Wed, Oct 18 2017, 7:12 pm

studying_torah I am thinking about what you write.

I am very sad by what you write.

I do not seek to offend.

I am sad when I unintentionally offend.

I apologize for causing offense.

I am not blind to the DISability aspects of autism. I live with it every minute of every day.

But that is an old song.

This thread is new song.

שיר לה' שיר חדש

#autismisaDIFFability

UnFarvosNischt

Wed, Oct 18 2017, 7:19 pm

I don't really know people with autism but your post touched me and I find it very inspiring for other nisyonos too.
Thank you for that amother Orchid.

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