How much should ASD children be "pushed"

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angelbear
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11 Jul 2012, 4:57 pm

Funny I was just thinking about this topic this morning. I haven't been on in awhile. My son just turned 7, and today I was wondering if I am doing everything I can to help him. It is just so overwhelming when you think of all that is out there, all the money you can spend, all the therapy you can try, and is there any guarantee that any of it will work. I too worry so much about my son's future. I had him when I was older to begin with, and he is an only child, so I do not have the luxury of hoping that a sibling will look after him when we are gone.

The thing is, there is no recipe for ASD. What I have found is that some of the issues my son had at 3 are no longer an issue, but new issues develop. Not necessarily worse issues, just new ones. So it is a constant learning process. I do the very best I can to enjoy my son for who he is, but at the same time try to push when I can. When I see that the pushing is overwhelming him, then I back off. My biggest worry is his social skills. My son likes to talk incessantly, asking repetitive questions, making up a lot of fantasy, saying repetive words, saying things out of context, not really picking up on the cues when someone is getting annoyed at the incessant talking. Yesterday, I sort of snapped at him and told him that I could not listen to his talk about cars anymore, that I love him very much, but sometimes I just need a break from hearing about or talking about cars. I try the best I can to indulge him and let him talk about his special interest, but at the same time, I want to teach him that not everyone is going to want to talk about cars 24/7. I felt bad about snapping at him, but then I thought to myself "I am his mother and I love him more than anyone on this entire planet, if I don't try my darndest to teach him the appropriate way to interact, who the h@@@ will. His relationship with me and my husband is going to be the most important one for him to learn how to develop any level of intimacy.

I try my best to give my son a lot of praise and let him know that we love him no matter what, but at the same time, I have to do my best to prepare him for the real world. I do try to keep in mind that he is only 7, and that there is plenty of time for him to learn things. I don't have to rush to teach it all at one time. What I have learned too is that he will eventually get most things, it will just take longer for him. And if something is not that important for him to learn, then I just let it go. For instance, we have tried to get him interested in learning to ride a bike. He has 0 interest. Well I think to myself is this vital that he rides a bike, NO, so let's back off and not worry about that. Then there is swimming....yes it would be nice if he knew how to swim, but he does not want to put his head under water. He loves being in the water, and is starting to understand the motions involved in swimming, but is it mandatory for him to know how right now? NO, so I just try to back off and let him enjoy splashing and playing in the water, and hopefully if he wants to learn, he will. I feel like if I pressure him too hard, then he will lose interest altogether.

Raising a child with ASD is no easy task. One thing that my son's ASD has taught me is to stop worrying about the future. I am learning more and more how to live in the moment. It is a fine balancing act of being focused on helping our kids be the best they can be, but at the same time being able to let go.

Hope some of this helps... I know it always helps me too to talk about it.



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11 Jul 2012, 5:24 pm

Angelbear , I love that you're version of "snapping" still has an "I love you very much" in there. If only all parents could do that when they were annoyed I think a lot of people would have a lot less issues.



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11 Jul 2012, 5:26 pm

This is such a hugely important topic for me. Sometimes my daughter seems so helpless and I fear for her future. I do try to "push" her (encourage, bribe, urge, etc) to do some things for herself or become more self sufficient. She has so much anxiety that she doesn't do much on her own without a lot of resisitence. At some point, I will have to face that no wishful thinking or waiting for her to develop coping mechanisms is going to happen on its own and we are going to have to really work on this. It seems we are mostly in "walking on eggshells" mode, which is not a time to push toward a new independence.

If I sat and listed how dependent my daughter is on me it would be pretty alarming. I don't know how to move her towards self sufficiency but I know I need to because she is nine years old now (and the past 9 years have flown by).

It's alarming how much of the tasks in her life I do and how she doesn't seem to have the thought process to think something is necessary or not. Plus, I am a bit OCD, so I am not the type to let her room pile up with dishes, dirty clothes, scraps of paper, etc before I will go do some straightening. But I still remind her to use soap in bathtub, rinse the soap from her hair, wipe when she potties, brush her teeth (which she hates and will simply swipe a brush across the teeth once and consider it done), put her shoes on, wear a jacket, close the door, not to leave water running, turn out the lights, get her book bag, get her lunch bag, etc, etc etc

So even thinking about teaching cooking food, cleaning, and all that "higher level" stuff seems ridiculously out of reach at this time.

I know I really need to get a plan in place to start working on things---or I will have an adult aspie child living with me forever (which right now it seems she would love that! :lol: )



angelbear
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11 Jul 2012, 5:44 pm

Thanks McAnulty----I do love my son so dearly, but I know that not everyone in the world will appreciate his uniqueness. I want him to know that I love him no matter what, but sometimes his issues get the best of me. I am only human, and I just try to do the best I can.

Mama to Grace-good to hear that you are still here. I haven't really been on here for months. I know exactly how you feel about getting a plan in place. It is so overwhelming to think of everything that my son does not learn naturally like other kids that I will have to teach him. It just seems like such an overwhelming feat that I just don't know where to begin. So I guess I just have to pick one or 2 things at a time to work on.



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11 Jul 2012, 6:50 pm

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I would love to hear the advice of ASD adults and parents who have been through this. What gave you the strength to overcome your challenges and manage to live independently? How do I find the balance of when to push him (because I feel he is capable of it) and when to accomodate him? I don't have that comfort anymore that with enough time, everyone catches up.


Well, one thing is that many of the adults here were diagnosed in adulthood. (I was almost adult - I was 15.) For those of us who grew up undiagnosed, the problem certainly wasn't not being pushed hard enough. We were assumed to be capable of everything an NT of the same age could do, and our inconsistent skills often made people think we were unmotivated when we were actually incapable. No one taught us how to compensate for our issues, just punished us whenever we fell short.

One thing I wished my parents had done when I was younger, in particular, was explicitly taught me life skills for independent living. We're only really getting into this now, at 23, because I've realized I'd like to live on my own but lack the skills to actually do so. If my parents had started earlier, I'm sure I'd be further along now.

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as my son gets older, he is almost 7 I fear for his future. he is EXTREMELY intelligent, he has the capability to do and be whatever he wants. The issues are his oppositional behavior, his defieance, his NEED to be in control, his lack of understanding the world doesnt revolve around him. He has all the potential, I just worry what IF those issues dont go away? So, I do push him. It would be silly of me to assume all those things will dissappear, so I work with him on accepting change, accepting NOT being in control 24/7, conforming, etc...We recently hired an ABA to work with challenging behaviors. I am not sure if ANY of this will help, but it is better then me sitting back and doing nothing.


Have you read about pathological demand avoidance? His issues sound like they could be caused by PDA, and if so, ABA will not help.

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But, I keep reading that it all get's worse. That my baby's ASD will get much worse before it gets any better. Do I start to challenge him now or later? School will challenge him. The idea is that I should build on that, but how do I build on that and still make home a safe place.


It doesn't usually. Most kids act most severely autistic in their preschool years, and many go through a sudden burst in development around 4-6 years old. (This is the age that some kids morph from classic autism to HFA.)



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11 Jul 2012, 6:54 pm

I haven't read all of the replies, so I apologize if I am repeating or addressing something that doesn't fit with a later post of yours.

When my daughter was your son's age, I did not push her. In fact, I wouldn't allow any ABA person into my home without agreeing to certain ground rules that included no pushing to the point of meltdown. I strongly believed that she needed a supportive environment with minimal stress because she doesn't learn things incidentally. She learns everything by being explicitly taught and I believed that too much stress would make it difficult for her to learn.

When she was kindergarten age (5), I determined that I was accommodating her too much. She was making so much progress and was working so hard, but I was working equally hard to avoid anything that might set off a tantrum, shutdown, or meltdown. I will state at this point that my daughter is mild in the grand scheme of things and so I think it is appropriate for me to set my expectations a bit higher for her than I think is fair for many kids on the spectrum. At this age, though, I started to feel like I wasn't doing her any favors because life was not going to accommodate her to that degree. So, I slowly started pushing her more.

She is now about to enter 2nd grade. I am very intune with what she can and cannot handle at this point. I now push her as much as I think I'd push a typical kid when it comes to things that she knows how to deal with and is capable of dealing with. I still accommodate those things that she has not learned to compensate for (newness, violations of her expectations, etc), but I do not spend my life trying to avoid upsetting her. Sometimes, in fact, I even intentionally upset her a bit so that we can work together to learn how to cope with it.

If I were to do it again, I'd do it the exact same way. I think I'd not push too much initially, then push more once they have learned the skills to deal with it.

In skimming I do notice that you are under the impression that your son will get worse before he gets better. That has not been my experience at all. The issues change, and some are harder to deal with than others, but both of my kids have made steady progress. They have bumps in the road and temporary set-backs, but if you were to graph it out, there is a steady trend upwards, even if there are momentary plunges downward.

I also think that this has a lot to do with temperament. Ever since my daughter was little, even when she was pre-verbal, all of her therapists have said that she has greater persistence than many kids on the spectrum. As long as she is not fearful of being judged as inadequate, she will repeatedly try something that she cannot do until she is able to do it. I think this has allowed me to push her more and more as she gets older. I imagine if she did not have this innate way of being that it might cause more problems to push her.



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11 Jul 2012, 9:31 pm

MomofThree1975 wrote:
Sweetleaf - you are right that society needs to make certain accomodations. Maybe in 20 years they will. But I have to plan as if they wont. How cruel would it be for me to leave my son to depend on the same society that has no place for him. So many people fall through the cracks, either they don't have anyone to advocate for them or can't advocate for themselves. Him living independent is not doing "society" a favor. society couldn't care less. He is doing that for his own survival. It is in his best interest to not end up on the streets, begging for food. In the winters our trains and subway stink. They stink mostly because all the homeless people, most with mental illness, ride the trains to keep warm. But, because of their untreated mental illness, they pee and poop on themselves, over and over again. Most survive from the people who ride the trains handing out food. Society doesn't care. So, my son not being independent only hurts him. Society would rather not look at him.

thewhitrbbit - I would love to know what your parents did. It would be so helpful. Also, I see that you are still fairl young, but do you feel that you are learning what you need to learn in order to one day live independently?

McAnulty - You are right, there are so many things to worry about, I could worry myself into the ground. However, when I feel helpless, like I am feeling right now, it helps to talk about the issue and try to come up with a plan. My plan might change weekly or montly, but I need to feel like I am helping him in some way. It helps to hear other people's stories so that I can try and avoid the same pitfalls. There are times though when I forget all of this and we are just a regular family. Talking about my fears and coming up with a plan, helps me get back that feeling of normalcy. Okay, that may not sound like it makes sense, but honestly, that's how my brain works.


Well I am mentally ill and would be homeless if i didn't live at my moms house...but that doesn't mean I'd pee or poop myself that is a little extreme. I mean maybe if someone has a very extreme mental illness and is that unaware it could happen but I don't think that is an appropriate way to stereotype the majority of homeless people. But anyways it is great to be self sufficient because it is true society does not do a very good job of accommodating.....but the sad thing is pushing too hard only makes it that much harder too find a way to survive at least from my perspective.

Society just really does suck...I wish I had an easy answer to what to do and how hard to push or not push and all but it's really hard to say for sure.


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11 Jul 2012, 9:34 pm

Based on the posts in the general area that I have read, I feel like it's a case of damned if you, damned if you don't. For every person who feels they weren't given enough help as a child and couldn't cope, there is another person who is resentful that they were placed in a special needs class with lower functioning children. All these kids of individuals, some may thrive under pressure, others will crumble.


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11 Jul 2012, 9:40 pm

I write a lot about finding the line between pushing enough and not too much. If I didn't push my son, he would be miserable, stagnant and not learn...he doesn't do anything without a little push. He finds out that he is happier once I've helped him past that initial inertia, to try to do new things and learn new things. OTOH, If I push him too much, he falls apart. There isn't a formula.

We kind of go by feel, and mess up a lot in both directions: I kept him out of baseball as a little kid, and we did soccer instead because I felt it had fewer rules and breaks and he would be able to focus better. Turns out soccer was horrible torture for all of us and we found out in gym he's a natural at baseball (though now he doesn't like team sports at all, he swims.)

Even our relatively fragile kids are resilient, just in a different way. I have come to believe that the big picture is what's really important, at least to my son. I talk about making mistakes and trying my best, and I try to own when I did something wrong - but I still try to hold him accountable for participating to the best of his ability and learning enough that when he's an adult he won't be limited in his choices.

BTW - I think teaching life skills is critical, and have been working hard for years to teach my son to cook. He does fine if I hover (and can do fine preparing cold foods) but the other day I tried to have him prepare spaghetti and meat sauce on his own (been doing it for nearly 5 years now) and he fell apart at the very beginning; I had to step in and hover like I usually do. I realized that we have to put in more time practicing each separate movement, especially the ones near the stove.



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15 Jul 2012, 12:06 am

MomofThree1975 wrote:
Sweetleaf - you are right that society needs to make certain accomodations. Maybe in 20 years they will. But I have to plan as if they wont. How cruel would it be for me to leave my son to depend on the same society that has no place for him. So many people fall through the cracks, either they don't have anyone to advocate for them or can't advocate for themselves. Him living independent is not doing "society" a favor. society couldn't care less. He is doing that for his own survival. It is in his best interest to not end up on the streets, begging for food. In the winters our trains and subway stink. They stink mostly because all the homeless people, most with mental illness, ride the trains to keep warm. But, because of their untreated mental illness, they pee and poop on themselves, over and over again. Most survive from the people who ride the trains handing out food. Society doesn't care. So, my son not being independent only hurts him. Society would rather not look at him.

thewhitrbbit - I would love to know what your parents did. It would be so helpful. Also, I see that you are still fairl young, but do you feel that you are learning what you need to learn in order to one day live independently?

McAnulty - You are right, there are so many things to worry about, I could worry myself into the ground. However, when I feel helpless, like I am feeling right now, it helps to talk about the issue and try to come up with a plan. My plan might change weekly or montly, but I need to feel like I am helping him in some way. It helps to hear other people's stories so that I can try and avoid the same pitfalls. There are times though when I forget all of this and we are just a regular family. Talking about my fears and coming up with a plan, helps me get back that feeling of normalcy. Okay, that may not sound like it makes sense, but honestly, that's how my brain works.


If you want to get the accomodations for him then you will need to challenge people's values and standards.



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15 Jul 2012, 8:56 am

maisiemoon wrote:
I try to challenge both my children whenever i can and when they are in a positive frame of mind... if highly stressed, under pressure or already having a tough day, I leave it for another time.
...
I support my son, I don't just expect him to 'get on with it' and sometimes it breaks my heart to see him struggle but i also know with my support, next time will be easier ( e.g. mud today- major meltdown, support through, trod on in wellies eventually, HUGE amounts of praise... by the end of 2 hours I had a little man covered in mud and SMILING... his self esteem and confidence has gone up and he knows in his mind he has 'dealt with mud and he survived and he can do it again!'

I know a few people who give in to every issues their child with ASD ( whether because it is a 'pity' thing , but more often than not it seems to be an 'easy option' ... giving into demands in the short term maybe make life easier , but long term , in my opinion , it is a recipe for disaster)... to me this insults a child's intelligence.... every child can learn with support.


I am not a parent, so I rarely visit this forum, but I like what maisiemoon wrote there. My own parents were pretty useless and probably not qualified to raise even a perfectly normal child, let alone an aspie. (To be fair, I'm only mild and they had no idea I'm an aspie.) They were really not very supportive at all, but I sometimes wonder if I would have been as high-functioning as I am if they were supportive. There's no way to know, but my best guess is: yes, if they went about it the right way. I think it's possible to push, but be supportive, as a few people here have said.

I'd just like to add one thing to that: make sure they know you understand them (when you do), even if you're not giving them what they want. Given that you're dealing with aspies here you'd have to be explicit about this by stating it and also showing that you understand by explaining reasons (as much as possible, given the child's level of maturity). If my parents did nothing more than say "I understand that you want to do ..., because ..., but we're going to do something else, because ..." I think my childhood would have been much better. (Of course, you have to actually mean that and that means you have to actually understand!) "I love you" is good, but it's not the same as "I understand you". I can't speak for your kids, but if my parents said "I love you" as they were being mean to me (in my view) I would ignore their words and look only at their actions. If they showed understanding that would be a different story entirely.

Maybe what I've said is self-obvious to people here, but I just thought I'd put it out there. I'm constantly impressed by how much patience the parents here show and how much effort they go to. It gives me some hope that not all is lost for the human race.



Ettina
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15 Jul 2012, 9:16 am

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Based on the posts in the general area that I have read, I feel like it's a case of damned if you, damned if you don't. For every person who feels they weren't given enough help as a child and couldn't cope, there is another person who is resentful that they were placed in a special needs class with lower functioning children.


I think the thing is that people often go too far to extremes in this - either not pushing the kid at all, or way too much.

With NT kids, it's easy, because you have guidelines for what kids of a certain age can handle. For example, we've found as a society that no matter when you start toilet training, the kid is unlikely to be able to do it before about 2-3 years. So we know to set a goal of the kid being trained at that age. Nowadays we train kids around that age and get them toilet trained quickly, in earlier generations we'd start much younger and the training would finish at that age, but either way, we know kids of that age can usually be fully toilet trained and younger kids can't.

With an autistic kid, to follow the example of toilet training, it's possible the kid may not be capable of toilet training at 2-3 years old. Instead, the kid may be at the same state of readiness at 4-5 years old. But you don't know in advance that the kid will be ready then, and not at 2-3 years old, or maybe much later than 5. It's a guessing game to try to train them when they're ready.

Everything for an autistic kid can be like this. Some things we're ready for earlier - for example many autistics are self-taught readers in preschool, which indicates they were ready for reading education for quite awhile. Other things we're ready later, or may never be ready to learn. It can be extremely hard to know when and how to push, because you don't know what the kid is ready for at a given age.

One good thing is that kids will often give subtle signals of what they can handle. Going back to the toilet training example, I've heard that kids are ready to be toilet trained if they start telling you when they have a dirty diaper.



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15 Jul 2012, 9:36 am

Ettina,

even with NT kids it isnt an exact science. ALL kids are different. What works for one kid wont work for another. Even kids int he same family htis is true for. If there were ONE way, then the person who figured that ONE way out would be a VEEEERY rich person! Go to the lib, there are a million parenting books all with different styles and techniques all claiming to work, with examples of kids it is successful in, yet they are all different techniques. And not all will work with one child.

I know several NT kids who didnt potty train until 5-6, and several ASD kids who potty trained at 2, 3 and 4.

Bottom line, know your kid, know when you can push and when you need to back off. It is a rule I use for both my NT and ASD kid.


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15 Jul 2012, 10:02 am

When I think about, my parents always seemed to know how far to push.

They certainly did push me; but they always seemed to know the hard limits (Things I could not do) from the soft limits (things I didn't think I could do)



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15 Jul 2012, 5:57 pm

With my son, it's so hard to tell if I am pushing him too hard because a lot of things, he will just "go along with the flow".

For example, we went to a new church today. I told him we were going but he was just happy that we were going "out". He happily went into the church and into the day care center with his older brother and happily told me bye. I gave the ladies a heads about about his ASD. When I picked him up, they told me that he wouldn't color but he was happy and played next to some other kids. He happily told them bye. However, if he is talking to me, and I don't respond because I don't know that he is talking to me, he will get upset and cry until I pay attention to him.

So how do I challenge him. People will ignore him. Do I ignore him to challenge him? Trying new things for the most part is not challenging to him.

If he is eating and spills food on himself or anywhere else, he will get upset and starts asking for whipes. I usually give him the paper towel and he will start to clean up the mess he made. He is okay if over time he gets messy, but something about a spill begs to be cleaned (unless he gets distracted and forgets about it). So how do I challenge him this way. I can easily redirect him, but should I have him play in the mess or have him clean it up likes he wants to.

I feel like our challenges don't quite follow any logic and so it's hard to figure out what where I should push him.

We have worked on and mastered potty training and putting his clothes in the dirty clothes basket and he does those. What other life skills can I teach a 3.5 yo?