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InThisTogether
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11 Jul 2012, 8:50 pm

I don't know what else to call this thread.

I think this question is probably for those with kids who have mild impairments (I have come to hate the term HF...I find when I use it to describe my daughter, no one understands what I mean...mild seems to work better.) Anyway...

Do you ever find yourself lulled into a kind of false la la land? I mean, both of my kids do so well. They are so awesome. I am so proud of them. And sometimes I think I just see them. Not their deficits. And although I think this is generally a very good thing, I find it also has it's drawbacks.

Because every once in awhile, something happens and it's like being kicked in the gut and slapped in the face all at once. It is either because one of them has a "moment" (you know...where all of a sudden you think OMGosh...she's autistic. Or maybe you don't know...maybe it's just me who seems to lose sight of things), or because I read something somewhere and I find my heart sinking to my feet.

I just read a thread in one of the other sections and I can't help but realize this is my son. Not that it's literally my son typing at his computer. But that this person, who is now a young adult, is telling my son's story. And I feel his pain. And I realize that this is never going to go away. My kids are always going to struggle. Because for as much as they learn to compensate, they are always going to have to work harder, and few people are ever going to recognize it or give them credit for it. They're just going to see the remaining deficit and judge them for it.

It takes me from my normally happy and hopeful state of being and puts me into...well...I feel despair.

Can anyone relate?



momsparky
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11 Jul 2012, 9:24 pm

Totally. In fact, one of the things we struggle most at is that my son's most advanced ability is to "pretend" to be "normal." This means he is constantly overestimated, all the time - not just by the school, or random people who see him in the street, but by me and my husband - and most of all, himself. It sucks.

It sucks, too, because of course the first part that you wrote is ALSO an accurate picture, right? BOTH things are true: they are amazing, capable, smart, wonderful kids who will be OK...AND they will have to struggle.



Ilka
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12 Jul 2012, 7:06 am

AS has no cure. It is something that is part of them. It will never go away. They can learn how to live with it, how to get a grasp on themselves, how to cope... but it will always be there. Which is not a bad thing. AS is part of who they are. It helps them be the wonderful people they are. My husband and child they both have AS. And they are wonderful people... with quirks. You have to accept their differences. You have to face the fact that they are Aspies and will always be. Try not to fool yourself thinking that one day they will be "cured" or "normal", because that is never gonna happen. But do you really want that to happen? Do you want them to be different? I adore how smart my husband and kid are, their photographic memory, the way they speak, the vocabulary they use, how passioned they are about the things they like, their twisted sense of humor, how strong their principles are... I do not want any of those things to go away. And they are that way because of their autism. Yes, I know there are a lot of ugly things about it, too, like the tantrums, the sensory issues, the meltdowns, the anxiety issues, and so on, but with the appropriate help and a lot of effort from their part your kids will probably be able to handle this. My daughter has being in therapy for 3 years now, and she is doing great, learning to control herself. I am very positive because my husband is an Aspie and he lives a "normal" life. So I like to think my daughter will do as well someday. We are here to help her get there.



angelgarden
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12 Jul 2012, 7:57 am

Absolutely. My son has been diagnosed Aspergers. He actually scored exactly 'on' the Autism cut-off, but for the most part I don't think anyone would ever think he's Autistic or even weird. He's being doing quite well since we started sensory integration, speech, and making changes at home. He has at time been doing so well that I've second-guessed myself, the psychologist, etc. I have to remind myself of where we started over six months ago, remind myself of the abnormal eeg's, remind myself of how needed and helpful therapy has been.

Then, the moments happen where I don't have to be reminded . . . such as the other day when he violently punched a kid right in the eye. My son is 5. The other kid had really done 'nothing'--well, what he did wasn't 'nothing' to my son, but to a different kind of kid it would have been nothing to get upset about. Then, those are the moments when I find myself near tears the rest of the day, frustrated, wondering if we will be able to help him learn to self-regulate and react calmly . . . or if we are going to have these issues when he is a teenager. I certainly hope not, but it is a 'mind-sobering, grave reminder that we need to take his issues seriously and not start thinking we are 'smooth sailing' or start getting lax about being pro-active.



postcards57
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12 Jul 2012, 8:57 am

I know exactly what you mean. Sometimes I not only forget my daughter is on the spectrum, I question the diagnosis. Keep thinking she might have just had a bad month during the testing (which was thorough and done by a psychologist who is tops in the region for ASD and which was *very* clear). I also hear that a lot from other people, who just think my dd is quiet, shy, a loner etc. and isn't on the spectrum. I think about how I answered questions about her everyday behavior and think, gee, she doesn't do that now, or not so often. So maybe she wouldn't be dx if I were to have her tested today.

And then when people are talking about how smart their children are (meaning getting good marks), how they got accepted into a great university, etc. I think: they have no clue. I know because *I* had no clue (my dd is the youngest of several kids and the only one who has struggled in school. A complicating factor is she was diagnosed with Asperger's but has in the low-normal range of IQ, and I do not think it is just because of the testing; she really has trouble understanding a lot of things. Not exactly the bright child who is awkward socially; she is fairly mature socially and emotionally but struggling with academics. So it's hard to relate to that dx.

And sometimes I blame any sign or difficulty on my poor parenting. In fact, it was the dx that kept me from doing that all the time, because I figured the fact that I couldn't "get" the inner workings of her mind had caused irreparable damage to her, and that is why she was kicking / bolting / swearing / ignoring me etc.

One thing I try to tell myself is that she is doing as well as she is, and not showing more signs of her autism, because our family is so amazing. :-)

J.



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12 Jul 2012, 2:05 pm

Nope, don't think this at all. If my son were not on the spectrum he would be a completely different person.



momsparky
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12 Jul 2012, 2:48 pm

I don't think the OP was wishing her child wasn't on the spectrum, I think she was pointing out that many of us with a child whose symptoms are less obvious sometimes forget the very real challenges our kids face. Sometimes this is a good thing, but sometimes it's not.

I wouldn't change my kid for the world, but the days when I realize that even though we've come a very long way, we are still far from the self-care and self-advocacy skills he will need to get by as an adult - those days are never good days.



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12 Jul 2012, 3:34 pm

Can totally relate. I guess what strikes me sometimes and makes my heart heavy is that there will most likely be very few people in this world who ever really get to see my son's wonderful side the way I do. I mean he just doesn't really like people that much, doesn't get them and they don't get him. I do think that he will eventually be self-sufficient and quite possibly even very successful but I think that he will have only a very few people in his life. That's OK if he isn't a social butterfly I just think it is sad because he is such a beautiful soul and has so much that could be shared with so many but that is not likely to happen.



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12 Jul 2012, 8:09 pm

Oh yes...I have heard so many times, he is doing so well and that "he is going to be fine"...what they don't say is "For a child with autism"...In the grand scheme of things, he is still going to have a lot struggles and uphill battles. Most people act really surprised when I tell them but with him it's the little things that are so hard. Yes, on the surface he is a typical 5 year old, he met all his milestones and is very capable in many ways (not to make light of it, I am extremely grateful) but it's the other things that he struggles with, making friends is a big one, getting his sensory issues and anxiety issues under control. I know that a lot of children his age have issues with focus and zoning out but I am certain this is something he won't grow out of. I have sleepless nights wondering how he will get on at primary school next year. Because he doesn't have a low IQ or behavioural issues, it's unlikely he will get any funding and I am just not sure whether he will cope.


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InThisTogether
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12 Jul 2012, 9:06 pm

Ilka wrote:
AS has no cure. It is something that is part of them. It will never go away. They can learn how to live with it, how to get a grasp on themselves, how to cope... but it will always be there. Which is not a bad thing. AS is part of who they are. It helps them be the wonderful people they are. My husband and child they both have AS. And they are wonderful people... with quirks. You have to accept their differences. You have to face the fact that they are Aspies and will always be. Try not to fool yourself thinking that one day they will be "cured" or "normal", because that is never gonna happen. But do you really want that to happen? Do you want them to be different? I adore how smart my husband and kid are, their photographic memory, the way they speak, the vocabulary they use, how passioned they are about the things they like, their twisted sense of humor, how strong their principles are... I do not want any of those things to go away. And they are that way because of their autism. Yes, I know there are a lot of ugly things about it, too, like the tantrums, the sensory issues, the meltdowns, the anxiety issues, and so on, but with the appropriate help and a lot of effort from their part your kids will probably be able to handle this. My daughter has being in therapy for 3 years now, and she is doing great, learning to control herself. I am very positive because my husband is an Aspie and he lives a "normal" life. So I like to think my daughter will do as well someday. We are here to help her get there.


I would not change my children for anything. I am well aware that their wiring is equally responsible for the things I love most about them and the things that cause them challenge. While I am not convinced that there is no "cure" for some kinds of "autism," I am certain there is no "cure" for my kids, mostly because they do not have a disease, nor do they have anything wrong with them.

I never said I wanted my kids to be different. The point of my post was more that sometimes during the day to day business of life, I get lulled into a sense of "normalcy" and I somehow forget. I forget that they are not like other kids. I certainly forget that they are behind for their age. I think especially because it's just the three of us. I kind of stop seeing the world outside of "just us." Then something will happen and it all hits me like a ton of bricks.

Accepting my kids fully and loving them for who they are is not incompatible with feeling sad to know that they will always have to work harder than other people, only to still fall short all too often, ykwim?



Ilka
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13 Jul 2012, 6:24 am

InThisTogether wrote:
I would not change my children for anything. I am well aware that their wiring is equally responsible for the things I love most about them and the things that cause them challenge. While I am not convinced that there is no "cure" for some kinds of "autism," I am certain there is no "cure" for my kids, mostly because they do not have a disease, nor do they have anything wrong with them.

I never said I wanted my kids to be different. The point of my post was more that sometimes during the day to day business of life, I get lulled into a sense of "normalcy" and I somehow forget. I forget that they are not like other kids. I certainly forget that they are behind for their age. I think especially because it's just the three of us. I kind of stop seeing the world outside of "just us." Then something will happen and it all hits me like a ton of bricks.

Accepting my kids fully and loving them for who they are is not incompatible with feeling sad to know that they will always have to work harder than other people, only to still fall short all too often, ykwim?


I am sorry I misunderstood you. Maybe because my husband is also in the spectrum, I never forget. And I am not that discouraged by the set backs. But maybe it is just because your kids are so young. When my daughter was younger I used to cry a lot. Almost every day. But that was mostly before she got the dx. After that I felt better. I think because it already had a name and we were able to do something about it. Because before that nothing worked... obviously. Something that helps feel better is that all good things come out of hard work, and that God only gives us what he knows we can handle. They are your kids for a reason, and they have AS for a reason. So do not worry that much. Yes, they will always have to work harder than other people, but that is not exactly a bad thing. And no, they wont fall short all the time. They will grow up and will improve. My daughter is doing so well that people is starting to "suspect" about her dx (yeah, after three years of therapy she is not the same person, if they had met her back then, they wouldnt). So yes, they do improve. Maybe not everybody, depending on how much to the right in the spectrum they are, but continue helping them and providing all the support you can, and I am sure your children will improve, too.



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13 Jul 2012, 1:35 pm

Bombaloo wrote:
Can totally relate. I guess what strikes me sometimes and makes my heart heavy is that there will most likely be very few people in this world who ever really get to see my son's wonderful side the way I do. I mean he just doesn't really like people that much, doesn't get them and they don't get him. I do think that he will eventually be self-sufficient and quite possibly even very successful but I think that he will have only a very few people in his life. That's OK if he isn't a social butterfly I just think it is sad because he is such a beautiful soul and has so much that could be shared with so many but that is not likely to happen.


My son is 3 1/2 and so it's very hard to figure out how well he will mature, however, if he can achive the parts highlighted in bold, I consider that a wonderful achievement.