Is an autistic child always a burden?

Page 2 of 3 [ 33 posts ]  Go to page Previous  1, 2, 3  Next

eikonabridge
Veteran
Veteran

User avatar

Joined: 25 Sep 2014
Age: 59
Gender: Male
Posts: 929

17 Aug 2018, 8:48 pm

Tawaki wrote:
There is a big difference between someone like Alex who can work, go to school, and communicate, and someone like my friend's son.

All you are saying is x^2 + 1 = 0 does not have a solution.

All you are saying is that there is no way of raising a child like your friend's son. All you are saying is that a "low-functioning" child is born low-functioning and will stay low-functioning.

- - -

Carly Fleischmann, non-verbal, severe OCD. Parents discovered by accident that she could type to express herself, when she was 11 years old. This year she interviewed Stephen Colbert.



What you are saying is that if Carly's parents had taught her to read at age 2, and taught her to type on computer at age 4 (like I did with my children, especially despite my son being hyperactive and initially had an attention span of less than 3 seconds) wouldn't make a difference. What you are saying is that it's best to wait until a child is 11 years old so that people can discover "accidentally" that the child could type. What you are saying is that it is irrelevant to develop a child visual-manually early on. What you are saying is that it's best to let the child develop severe OCD, by applying traditional intervention techniques. What you are saying is that even after discovering the child could type and communicate manually, it was unnecessary to draw pictures and write down words for the child. What you are saying is that the parents/teachers/psychologists/therapists absolutely have done nothing wrong. What you are saying is that blaming children is the easiest way out.

Yeap, people always blame the children. Yeap, they always think that the adults have absolutely done nothing wrong. Nahh... those adults are low-functioning. And, that, is the only reason we have low-functioning autistic children.

Tell me, is Carly Fleischmann low-functioning or not? Is her brain developed or not? Huh?

- - -

Even from the days when my children were non-verbal, I was *always* able to remove their tantrums. Do you ever wonder how I did it? I talked to them, through their eyes. Show me one single other parent in the whole entire world that has raised their autistic children by "talking" to them through hand-made animation video clips, when they were 2 years old. Every day, every night, I talked to my children by drawing pictures. Yeah yeah yeah, what's the big deal about drawing pictures and writing down words for your children, huh? You ask. Well, you don't want to do that, and want to complain about children's recurring tantrums? Huh? You don't see the connection between pictures and tantrum removal? That is precisely why your friends get to *enjoy* their child's tantrums. Go ahead, enjoy those tantrums. Sure, go on, blame the children. Not my problem. It's their choice. Have fun. It's so much fun when the child has piled up resentments day after day, week after week, year after year. How old is your friend's son? That's how many years of resentments he has piled up. Now, you want to remove all those resentments? Good luck!

For heaven's sake: read what I write, for once. http://www.eikonabridge.com/fun_and_facts.pdf

- - -

NONE of you here in the forum communicates more visual-manually than I do. NONE. Don't you think it's a little bit funny that my children are doing well and I have a happy family, huh?


_________________
Jason Lu
http://www.eikonabridge.com/


DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 12,865
Location: Northern California

19 Aug 2018, 6:11 pm

Eikonabridge, you write as if no NT parent has ever thought of any of your ideas, and even the lowest functioning ASD child will be brilliant if just someone would listen to you. You realize, I hope, that it absolutely is NOT that simple? Some NT parents are remarkably insightful with their children, and highly creative at reaching and raising them. Some severely impaired ASD individuals are that way not just because of the ASD, but also severe retardation or other issues. While we can all hope that the right touch helps someone uncommunicative out of their shell, and hope that someone in that person's life will apply that perfect touch, sometimes there actually truly is nothing to be done. It isn't fair to parents for you to assume that every parent in a difficult situation is missing points that just listening to you will miraculously solve. You aren't the only person in the world that knows how to be a good parent to your child, ASD or not. Nor is everyone is capable of following the way you communicate and adapting to your style. You have a lot of helpful ideas, but your arrogance really can be counter productive. We all put our best advice on here and then should live with the result, whether a parent finds it helpful or if they ignore it. Not our call. We don't have all the facts. That would be impossible on a message board.

You need to realize that I have an extremely happy and thriving ASD son, who is very grateful for the way he was raised, the things I did for him, and the schools he went to. Do you really believe only your children thrive? There is no one single way to parent. Every family and every child is different. We all just do our best, some succeed more than others, but that still doesn't guarantee you know all the answers for anyone else's child.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


eikonabridge
Veteran
Veteran

User avatar

Joined: 25 Sep 2014
Age: 59
Gender: Male
Posts: 929

23 Aug 2018, 5:41 am

DW_a_mom wrote:
... There is no one single way to parent. Every family and every child is different.

Autism is renormalization. I've covered this topic plenty of times.

The "every child is different" thing is macro-scale phenomenon inside the brain, dictated by chaos theory. That's not autism. By saying "every child is different" you are not saying anything about autism. That is true even for neurotypical children. Autism is a meso-scale phenomenon inside the brain.

https://wrongplanet.net/forums/viewtopic.php?f=21&t=361583&start=35

See, at micro-scale (genomics or single-cell level) and macro-scale, you have multitude of causes/manifestations. All those things are not autism. Autism happens at meso-scale. Renormalization always implies universality: the problem simplifies, the types of interactions reduce to a small subset. And as I always say: a meso-scale problem needs a meso-scale solution.

This is still a pretty cool picture to illustrate the interface between micro- and meso-scale. Of course, I see things that no one else can see.

Image

I've also explained about all this in http://www.eikonabridge.com/AMoRe.pdf

Image

... That being said, the locations of those gigantic droplets vary from child to child. The locations of
those big droplets are random: they follow a physical law known as the "Chaos Theory"
https://en.wikipedia.org/wiki/Chaos_theory, popularly summarized into the expression as "The
Butterfly Effect" https://en.wikipedia.org/wiki/Butterfly_effect. That is, no two children are
identical, each child has his/her own interests/pickiness/sensory issues, etc. The uniqueness of each
child (the unique locations of the drops inside their brains) is not an autistic phenomenon, the
"Chaos Theory" applies to both neurotypical and autistic children. So when people tell me that
each autistic child is different and need to be approached differently, my answer would be: "duh?!"
The chaotic locations of the droplets have nothing to do with autism. That's not the universality
that I am talking about. ...


See, I have been extremely consistent in what I say, throughout all these years. But it seems like you are always looping around the same comments of yours, again and again. I've answered all your points in the past.


_________________
Jason Lu
http://www.eikonabridge.com/


Last edited by eikonabridge on 23 Aug 2018, 5:56 am, edited 2 times in total.

HighLlama
Veteran
Veteran

User avatar

Joined: 12 Apr 2015
Age: 39
Gender: Male
Posts: 7,936

23 Aug 2018, 5:49 am

Parents are a burden. Often you have to raise them.



eikonabridge
Veteran
Veteran

User avatar

Joined: 25 Sep 2014
Age: 59
Gender: Male
Posts: 929

23 Aug 2018, 6:03 am

HighLlama wrote:
Parents are a burden. Often you have to raise them.

Ditto.

Most of the so-called "high-functioning" children actually end up raising themselves. That is not an efficient way of growing up or developing. So, you end up with a smart guy like Einstein, that sometimes behaves like an 8-year-old.


_________________
Jason Lu
http://www.eikonabridge.com/


DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 12,865
Location: Northern California

24 Aug 2018, 5:28 pm

eikonabridge wrote:
DW_a_mom wrote:
... There is no one single way to parent. Every family and every child is different.

Autism is renormalization. I've covered this topic plenty of times.

The "every child is different" thing is macro-scale phenomenon inside the brain, dictated by chaos theory. That's not autism. By saying "every child is different" you are not saying anything about autism. That is true even for neurotypical children. Autism is a meso-scale phenomenon inside the brain.

https://wrongplanet.net/forums/viewtopic.php?f=21&t=361583&start=35

See, at micro-scale (genomics or single-cell level) and macro-scale, you have multitude of causes/manifestations. All those things are not autism. Autism happens at meso-scale. Renormalization always implies universality: the problem simplifies, the types of interactions reduce to a small subset. And as I always say: a meso-scale problem needs a meso-scale solution.

This is still a pretty cool picture to illustrate the interface between micro- and meso-scale. Of course, I see things that no one else can see.

Image

I've also explained about all this in http://www.eikonabridge.com/AMoRe.pdf

Image

... That being said, the locations of those gigantic droplets vary from child to child. The locations of
those big droplets are random: they follow a physical law known as the "Chaos Theory"
https://en.wikipedia.org/wiki/Chaos_theory, popularly summarized into the expression as "The
Butterfly Effect" https://en.wikipedia.org/wiki/Butterfly_effect. That is, no two children are
identical, each child has his/her own interests/pickiness/sensory issues, etc. The uniqueness of each
child (the unique locations of the drops inside their brains) is not an autistic phenomenon, the
"Chaos Theory" applies to both neurotypical and autistic children. So when people tell me that
each autistic child is different and need to be approached differently, my answer would be: "duh?!"
The chaotic locations of the droplets have nothing to do with autism. That's not the universality
that I am talking about. ...


See, I have been extremely consistent in what I say, throughout all these years. But it seems like you are always looping around the same comments of yours, again and again. I've answered all your points in the past.


Hm, what is the difference between "consistent" and "the same comments?"

You and I have very different styles, and sometimes mine will work better for a reader, and sometimes yours will.

But most of what you've written here ... I'm just laughing. I don't see the point to it at all. My son would, but I don't. Which means that kind of dialogue towards any parent whose brain works the way mine does is useless in driving home its intended point, although it can be an insight into how ASD individuals think.

It may not come across, but I mean my posts to you with love. You have the power to be much more effective with NT parents than you actually are.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 12,865
Location: Northern California

25 Aug 2018, 5:07 pm

Jason, I do apologize for being harsh at times, but you show frustration at not being listened to. The best way to overcome that is to speak in a way your audience will understand. You can’t expect them to get inside your brain; few parents have the time or patience for the level of detail and seemingly tangential discussion you like to impart. You are most effective when you keep it simple: “have you tried talking to your child in pictutes? You can accomplish a lot with pencil and paper and stick figures.”

Try as I might I have never been able to completely follow my son’s logic. Because I love him and want to hear him we’ve spent a lot of time trying, believe me. When I do get it, I usually come up with a one sentence summary that he will usually tell me makes the point a lot more clearly. Over time, he’s learned to cut down the analysis in his mind and present that one sentence, one of many skills that has made him a very effective instructor (he teaches programming to kids in the summer). I know you want to make a difference for the children of the families here, and you already do. But I believe you could do more.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


Gallia
Veteran
Veteran

User avatar

Joined: 29 Mar 2018
Age: 27
Gender: Male
Posts: 1,063

25 Aug 2018, 5:11 pm

elsapelsa wrote:
I don't see my daughter as a burden in any way. I see her as the most amazing person I have ever met who achieves amazing things through difficulties and who sometimes slips up and needs more of a understanding and helpful hand than others might need.


you sound like a wonderful mom!


_________________
Diagnosed with ADHD
Online Autism/ Asperger's Screening = 38 (Autism likely)


eikonabridge
Veteran
Veteran

User avatar

Joined: 25 Sep 2014
Age: 59
Gender: Male
Posts: 929

26 Aug 2018, 10:38 pm

Gallia wrote:
elsapelsa wrote:
I don't see my daughter as a burden in any way. I see her as the most amazing person I have ever met who achieves amazing things through difficulties and who sometimes slips up and needs more of a understanding and helpful hand than others might need.

you sound like a wonderful mom!

While I have great respect for elsapelsa and other parents here, we need to be able to see things from the other angle, too. Frankly, we take it for granted, from the neurotypical angle, about things like "through difficulties" and "who sometimes slips up and needs more of an understanding and helpful hand than others might need" as an absolute truth. We forget how patronizing and condescending all this sounds, when viewed from the other angle.

It's a bit like the case of color blindness. You see color blind people struggle with not able to distinguish colors. You take it as natural that they have difficulties and need more of an understanding and helpful hand than others might need. What you are conveying with this attitude is ableism. All this, until you realize that our mammal ancestors were tetrachromats, and that compared to our ancestors, we are all color-blind.

Most animals nowadays are dichromats. Dichromacy is the overall, general direction in evolution. And all those modern dichromat creatures live just fine. If our society were made up of 100% dichromat people, it would function just fine, and no one would even label themselves as color blind. They would not have "difficulties" or "need more of an understanding and helpful hand than *others* might need", because there would be no *others*. Just like we trichromats function well today and don't view ourselves as disabled, simply because we have no tetrachromats around us.

I know it's just a way of conveying a message in a way so that most people out there can relate to. But there is alternative to ableism. And my take is that we should gradually phase out ableism from our language and from our way of thinking. I, for one, never view my children as having "difficulties" or "need more of an understanding and helpful hand than others." I view all my children's actions as sovereign expressions. To others it may seem a minor point, but do you know how offensive that those condescending comments sound to my ears? Do I want my children to grow up and then read on the Internet that their parents think their children are just not as perfect than the *others*? I always view my children as equal-rights fellow human beings, and perfectly fine the way they are. If anything, I see the fault at our society level: our society has not been set up properly for autistic children to thrive. I truly believe that raising autistic children can be made economical and won't need to cost more effort or money than raising neurotypical children. Economy of scale can be achieved. But we need to fundamentally reform our entire educational approach. Our educational system (home and school) is completely outdated. But that's something we can discuss some other time.

Also, perhaps it's just me. Whenever someone tells me "you are such a great person," I always react inside my mind with "what does this person want from me?" If you understand why Bob Dylan dragged his feet in accepting the Nobel Prize (and actually went into hiding for a while) or why Grigori Perelman turned down the 1-million dollar Millennium Prize plus the Fields medal, you can perhaps understand that, to some people, they don't see the point of "punishment and reward." To me, autistic people do have some innate values that are much more aloft than mundane neurotypicals. We often forget what we are good at, and blindly follow the neurotypical paradigm. To me, it's not so much "what we can learn from them" but "what they can learn from us."


_________________
Jason Lu
http://www.eikonabridge.com/


elsapelsa
Veteran
Veteran

User avatar

Joined: 23 Dec 2017
Gender: Female
Posts: 840

27 Aug 2018, 1:44 am

I do see your point Jason.

Here is what I mean. My daughter can often achieve more than her peers in certain areas. Her achievements really are not "normal" in many ways in a group setting. But she does need more input from me, in ways, compared to other people. That input is often in the form of reassurance or someone who gets that she has a need at a particular juncture and helps her fulfill it and maintain balance.

Sure I could phrase it differently. But in my mind it amounts to the same thing as going up and down in elevators. That is an accommodation of sorts. I provide my own accommodations of sorts. I cared for an autistic boy as a teenager and we would ride the trains. With my daughter her focus is much broader and her life is very full and much of her focus is to be able to do exactly what her friends do (who don't know and whose parents don't know she has autism) without crashing half way in the middle. So I provide support to help her do that.

That support often takes the form of digging deep and finding lots of patience. Because she will do something that over stretches her, something that is beneficial, but will then need to vent and let her frustration out. I can see the benefit of doing the thing that over-stretched her so I provide a safe space to vent and let the frustration come out. I don't take it personal. I play the end-game. That is what I meant by slip-up, that is what I meant by helping hand.

If I sounded patronising, it was not intended, to be honest I though most people here would get that was what I meant. Either way, I do take your point. Thank you.

I love how you raise your children but I think you are missing something.

You mention knowing about your children's autism from about 2. You have also mentioned your father ( maybe even grandfather) raising you in a way which was very supportive when you were a child. So, you come from a family that, for generations, has embraced the positives of autism and lived well with autism. Great. There is no way I could have spotted my daughter had autism at 2. She spoke at 6 months. Maybe at 5 but even then a child specialist in autism commented ( off hand) how she clearly did not have autism. You might argue that you would have seen it.... well maybe. I didn't.

So, at 8 when I finally figure it out..... I am well behind. I also believe I have a degree of autism so many of the things that might have stood out more to others did not stand out to me. The pattern has been there for that my whole life but my parents never flagged that, I just assumed "all that" was just me. So, we don't have the benefit of generational knowledge and know how. What we have is self awareness and knowledge of what works in specific cases.

So I have always raised her and respected her as an individual. All babies have generic needs and specific needs, I just specialised more and worked out more of her specific needs. There is nothing wrong with having needs. What I haven't done is adjust my parenting to account for autism specifically (until now) but I have always adjusted my parenting to account for her. I always had lots of alone time with her, feeding her interests and having fun.

And a lot of the things she needed I provided by accident. For example I wrapped her on my back for many years, this fitted perfectly with the proprioceptive needs I didn't know she had. I am very creatively minded although not very artistic, but I always have tons of art supplies within arms reach and she has had full access to art materials pretty much from birth.

I have raised a child that is very self sufficient. Someone I can trust to leave alone at home, or to go out by herself, who can bake and cook from scratch without assistance, who can go off with friends for days and nights and mostly be the one who keeps her calm and has coping strategies to get through most challenging situations, someone who is extremely good at art and writing and someone who is (perhaps surprisingly!) extremely social. I am not sure how that happened as I am not, and have never been, particularly social. If I had to guess it is because I didn't push her to be social like my mum did with me but allowed her the safe space and patience (once again, approached things with understanding and a helping hand) to come to things on her own terms. Now she really aces friendships.

But she is still someone who sometimes comes home and needs to crash from the exhaustion of it all.

It brings up an interesting question.... what is the relationship between coping and masking.... I want to raise a child who is confidently autistic, who copes, who has good coping strategies, but inevitably there is always masking.

Also, I have given her total control of who she shares her diagnosis with. I never talk about her having autism - apart from on here - and so I am not the parent who goes ahead with a machete clearing the way. I assume that might be different if you know at 2 years old but finding out at 8, with her being such a determining part of the assessment process, I feel this is her information. She has full ownership of this. I also want her to internalise it in a positive way and be the main agent determining how she goes forward. She has started to share with a few people, she has written a bunch of books on autism and is thinking of doing some videos but really we are both still in the early stages of figuring out how to live confidently with autism whilst doing what everyone else does and more.

I am decades if not centuries behind your family in terms of understanding autism. I get that. But that is why I feel so privileged to have access to your, and others, thinking on here.


_________________
"I will file you under "L" for people I love most. "


Last edited by elsapelsa on 27 Aug 2018, 5:28 am, edited 1 time in total.

Benjamin the Donkey
Veteran
Veteran

User avatar

Joined: 7 Mar 2017
Age: 58
Gender: Male
Posts: 1,079

27 Aug 2018, 5:19 am

Aren't all kids burdens?

I have two sons, one ASD (10) and one NT (9). They're both really great kids and I love them both. My NT son is smart, fun, kind, but... If I'm being honest, he's also a little too boringly conventional in his thinking. (For me, that is.) ASD son is also smart, fun, kind, and often infuriatingly exasperating, but also wildly original in his thinking, seeing surprising patterns in everything. I actually relate to him much better, though to an outside observer he'd seem like a bigger burden.


_________________
"Donkeys live a long time. None of you has ever seen a dead donkey."


elsapelsa
Veteran
Veteran

User avatar

Joined: 23 Dec 2017
Gender: Female
Posts: 840

27 Aug 2018, 6:42 am

Benjamin the Donkey wrote:
Aren't all kids burdens?

I have two sons, one ASD (10) and one NT (9). They're both really great kids and I love them both. My NT son is smart, fun, kind, but... If I'm being honest, he's also a little too boringly conventional in his thinking. (For me, that is.) ASD son is also smart, fun, kind, and often infuriatingly exasperating, but also wildly original in his thinking, seeing surprising patterns in everything. I actually relate to him much better, though to an outside observer he'd seem like a bigger burden.


Mine are both highly unconventional in their thinking but my (most likely) NT child is still young at 4. The thing I would say which is very hard with raising a NT child (if she is NT) is her lack of need for private time and silence. She gets re-charged and energised by our social interactions whilst her (ASC) sister and me both get quite drained.

Also, my NT child never stops talking... literally: (In the car yesterday): "So mum, are you in 3rd or 4th gear now? Do you think you will change to 1st or 2nd as we approach the round-about?" Talk about backseat driving. Then a bit later: "Why is it that there is ice on mercury although it is closest to the sun?" "is it because there is no atmosphere? What other reasons could there be.... what do you think?" "what do you mean you don't know?" "How can you not know?" "When will you know?" This inquisitive line of questioning goes on from the moment she opens her eyes until she falls asleep. I can't wait for her to start school so she has someone but me to feed her information. I have convinced her that maths is the gateway to physics which is the gateway to astro-physics so she is super psyched. I, on the other hand, am pretty sure she is going to be fairly disappointed by school and how mediocre it all is.


_________________
"I will file you under "L" for people I love most. "


lostonearth35
Veteran
Veteran

User avatar

Joined: 5 Jan 2010
Age: 48
Gender: Female
Posts: 10,315
Location: Lost on Earth, waddya think?

27 Aug 2018, 10:29 am

My parents don't seem to think I was a burden. :)



DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 12,865
Location: Northern California

27 Aug 2018, 7:57 pm

elsapelsa wrote:

... but finding out at 8, with her being such a determining part of the assessment process, I feel this is her information. She has full ownership of this.


Same with my son. He has ownership. I have never discussed it with anyone without his permission. He was seven when we did the testing and was involved in every decision starting with if we would even pursue testing. It is his internal brain, not mine, and that makes it an intensely private thing. We should all be able to choose how much the world knows of our own inner workings, IMHO.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


elsapelsa
Veteran
Veteran

User avatar

Joined: 23 Dec 2017
Gender: Female
Posts: 840

28 Aug 2018, 3:46 am

DW_a_mom wrote:
elsapelsa wrote:

... but finding out at 8, with her being such a determining part of the assessment process, I feel this is her information. She has full ownership of this.


Same with my son. He has ownership. I have never discussed it with anyone without his permission. He was seven when we did the testing and was involved in every decision starting with if we would even pursue testing. It is his internal brain, not mine, and that makes it an intensely private thing. We should all be able to choose how much the world knows of our own inner workings, IMHO.


Thanks for saying that. I am constantly arguing this point with my husband so glad there is someone else who thinks the same as me.


_________________
"I will file you under "L" for people I love most. "


DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 12,865
Location: Northern California

28 Aug 2018, 3:33 pm

elsapelsa wrote:
DW_a_mom wrote:
elsapelsa wrote:

... but finding out at 8, with her being such a determining part of the assessment process, I feel this is her information. She has full ownership of this.


Same with my son. He has ownership. I have never discussed it with anyone without his permission. He was seven when we did the testing and was involved in every decision starting with if we would even pursue testing. It is his internal brain, not mine, and that makes it an intensely private thing. We should all be able to choose how much the world knows of our own inner workings, IMHO.


Thanks for saying that. I am constantly arguing this point with my husband so glad there is someone else who thinks the same as me.


Fast forward to adulthood, where my son is now. His control over his own life and ability to develop true independence has been VERY important to him. He gives us a LOT of credit for the choices we made raising him. He knows far too many ASD individuals whose parents didn't make the same choices, and he has seen how quickly things can go wrong. He has expressed a lot of gratitude to us. Every situation is different, and Lord knows I questioned my own choices at the time, but I'm happy with how it all turned out. You've got this.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).