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lostonearth35
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02 Apr 2014, 7:56 pm

I swear if I hear one more thing about Autism Speaks I am going to scream until my vocal cords snap. All people with Asperger's are supposedly mute anyway, so at least I'll fit that one "idea" they have about us. Although I'll still be able to go potty by myself and know my alphabet. It makes me so angry, but what can I do about it?



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02 Apr 2014, 9:05 pm

When I hear the term "toolkit" I think of my first year archaeology class and the "archaeologist's tookit" which they use to decipher findings. Autism Speaks' use of the term does make me feel a bit like a specimen.


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04 Apr 2014, 6:50 pm

Waterfalls wrote:
I agree, the toolkit idea has some merit. But no, they don't realize we can hear them.

The philosophy is well embodied by a mom I know slightly who told me her 10 year old daughter is autistic after the child had ignored me saying hello. This is a little girl who I learned has had years of school and private services. Her mother told me her daughter does not know nor need to know she is autistic. I was dumbstruck how she thinks her little girl, fully mainstreamed, has somehow heard not a single conversation about being autistic. Or how she thinks it's better her child guesses what all these services have been for. I want not to judge, this is her child, she knows her best, but I wonder, if the little girl really has somehow not overheard, anywhere, what story she tells herself about how or why she is different.

Anyway separate from the issue of not telling and leaving ones child ignorant and whether that is right, or wrong, separate from this mom's idea her child had no need to know, is the reality to her that her child could not hear or would not understand the words, all for a child that so far as I can tell is academically capable of 5th grade work. So no, I don't believe they realize we can hear them.


A little off-topic, but parents always seem to be oblivious to the fact that their children can hear them.

My ASD son has never been bothered by it, interestingly enough. He has always made it known that he is listening, in his own way. And because of that I, in turn, am careful what I say and watch him to see how he is feeling about it.

My NT daughter, however, just wants me to keep my mouth shut all the time. Not say anything good, not say anything bad. But parenting is a big part of my life, how can I NOT talk about my kids?

So, in this case, of course they do and they don't know that you can hear them. But they feel they have a job to do, and that overrides the issue of who may be listening. I guess my question is, did you find anything offensive in the tool kit? I've never read it, but I've heard it actually is not bad. If that is the case, does it matter?

As for that mother you know - I don't understand not telling your child about their diagnosis. Mine has always known. Most parents agree that with ASD kids you can and should tell them. But I've had a few parents explain why they did not and it was usually because of something unique to that child that I have not had to deal with. So, you have to assume there must be a reason.


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04 Apr 2014, 6:54 pm

Ann2011 wrote:
When I hear the term "toolkit" I think of my first year archaeology class and the "archaeologist's tookit" which they use to decipher findings. Autism Speaks' use of the term does make me feel a bit like a specimen.


Think of it as a kit with tools to fix the parents. After all, we're usually the ones trying to figure out what this all means and what we're supposed to do and if we should be worrying or freaking out ... or not. And we're the ones who have to alter our dreams for our child's future (which were never real anyway, but most parents figure that out gradually over 18 years, not in the space of one meeting with a professional). And we're the ones with a job to do that we no longer think we know how to do and, thus, are running around looking for guidance. The child is still who he always was and is just as happy (or not) as he always was. He isn't the specimen. Mom and dad are.

Or maybe you can think of it as being similar to what happens when I take my ASD son to an amusement park or other strange and crowded place. If I hand him a map, he can handle it. It gives him a sense of structure and purpose, even if it does not actually change anything about the place. But with a map in hand, he feels he can plan and the place seems like something he can manage. So handing the parents the tool kit is like handing my son the map. It does not actually change anything, but it does change the parent's ability to feel in control of the situation. And, again, it is a fix for the parents, not the child.


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04 Apr 2014, 8:34 pm

DW_a_mom wrote:
I guess my question is, did you find anything offensive in the tool kit? I've never read it, but I've heard it actually is not bad. If that is the case, does it matter?

As for that mother you know - I don't understand not telling your child about their diagnosis. Mine has always known. Most parents agree that with ASD kids you can and should tell them. But I've had a few parents explain why they did not and it was usually because of something unique to that child that I have not had to deal with. So, you have to assume there must be a reason.

There website has some positive stuff on it. I've seen some of the toolkit, same thing.

What bothered me, and I know I am taking it personally, but the mother told me that because their first child has autism they decided they could not take a chance on having another child lest that child have autism, too, and was so matter of fact about it, and just the way she said her child has no need to know she has autism like it is not simply a diagnosis or a problem, but something shameful. I felt as if she was saying that I shouldn't be alive. I do take things literally, and I don't think she knows I have ASD. It just made me upset hearing her talk this way.



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05 Apr 2014, 7:41 am

DW_a_mom wrote:
I guess my question is, did you find anything offensive in the tool kit? I've never read it, but I've heard it actually is not bad. If that is the case, does it matter?


It was not so much the content as the title of the tool kit we have been questioning.

People here on WP often share feelings of elation and relief about their recent ASD diagnosis - because they finally have a scientific explanation for their difference, and a reference point for understanding some of their struggles. The diagnosis also confirms what community they can look to for understanding and similarity. Nothing has changed about the child. Why shouldn't the parent feel something similar to that elation and relief? The brochure could start out by saying "Congratulations" or "Good job, you have taken a giant step towards understanding your child better, and thanks to you, your child can begin to understand himself in a way that never would have been possible if you had not taken this giant step."

I should admit that I think the whole soccer mom culture is a load of BS, so 1) I don't think the title should sound like a survivor's guide for the 5 stages of loss, and 2) I don't like the whole Day Planner aspect of this document. I am neither diagnosed, or a mom, but that's my opinion.


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05 Apr 2014, 1:17 pm

EmeraldGreen wrote:
DW_a_mom wrote:
I guess my question is, did you find anything offensive in the tool kit? I've never read it, but I've heard it actually is not bad. If that is the case, does it matter?


It was not so much the content as the title of the tool kit we have been questioning.

People here on WP often share feelings of elation and relief about their recent ASD diagnosis - because they finally have a scientific explanation for their difference, and a reference point for understanding some of their struggles. The diagnosis also confirms what community they can look to for understanding and similarity. Nothing has changed about the child. Why shouldn't the parent feel something similar to that elation and relief? The brochure could start out by saying "Congratulations" or "Good job, you have taken a giant step towards understanding your child better, and thanks to you, your child can begin to understand himself in a way that never would have been possible if you had not taken this giant step."

I should admit that I think the whole soccer mom culture is a load of BS, so 1) I don't think the title should sound like a survivor's guide for the 5 stages of loss, and 2) I don't like the whole Day Planner aspect of this document. I am neither diagnosed, or a mom, but that's my opinion.


The thing with parents is we develop all these ideas about our infants, and society encourages it. So many people told me my son was brilliant and he was going to do amazing things some day. When he was 6 months old! When he learned to sit, he used a center split to push himself up, which had people telling me he looked like a future Olympic gymnast. You try not to buy into all that, you know your child is just a baby, but you can't help it, you start developing this image of your child and creating dreams for his future based on that.

Most parents have 18 years or more to see that false foundation crumble away. Little bit by little bit. You do figure out you can't dream up your child's future based on infancy.

But when you get a diagnosis, the crash is instant. In one moment you realize that your dreams were way, way, off. My son's flexibility? Not a gift, but a disability - he is hypermobile, and that causes him all sorts of issues. I did not get to gradually figure this out, it crashed on me. And the idea that since my son loved people and being social that maybe someday he could be president? Yeah, right. He may have liked those things as a toddler, but diagnosis told me he wasn't exactly talented at reading people. Again, it was always a false dream, but normally parents figure that out over decades, not in the space of 5 minutes.

And all of that is entirely inside the parent's head. I know that. The child never changed. But you have to give parents a little time to realize that on their own.

I actually had a mix of feelings when my son was diagnosed. Relief in having an answer was definitely part of it: I knew something was going on, and having the right answer felt good. But, at the same time, I was being hit with all the ways I had misread my child, and had made poor decisions for him. The guilt on all that was huge.

And, finally, it is incredibly rough to sit in a meeting and hear experts tell you in clinical terms that your wonderful, brilliant 7 year old does the list of skills at a 4 year old level. It is one thing to observe he isn't like his peers, but another to have someone lay it out so coldly and in numbers. It just kills you. You know this is information from which to build, but it is still amazingly difficult emotionally to hear.

Does any of that help you understand?

As I said before, it is the parents who need fixing in that moment. Not the child.


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06 Apr 2014, 10:46 am

DW_a_mom wrote:
EmeraldGreen wrote:
DW_a_mom wrote:
I guess my question is, did you find anything offensive in the tool kit? I've never read it, but I've heard it actually is not bad. If that is the case, does it matter?


It was not so much the content as the title of the tool kit we have been questioning.

People here on WP often share feelings of elation and relief about their recent ASD diagnosis - because they finally have a scientific explanation for their difference, and a reference point for understanding some of their struggles. The diagnosis also confirms what community they can look to for understanding and similarity. Nothing has changed about the child. Why shouldn't the parent feel something similar to that elation and relief? The brochure could start out by saying "Congratulations" or "Good job, you have taken a giant step towards understanding your child better, and thanks to you, your child can begin to understand himself in a way that never would have been possible if you had not taken this giant step."

I should admit that I think the whole soccer mom culture is a load of BS, so 1) I don't think the title should sound like a survivor's guide for the 5 stages of loss, and 2) I don't like the whole Day Planner aspect of this document. I am neither diagnosed, or a mom, but that's my opinion.


The thing with parents is we develop all these ideas about our infants, and society encourages it. So many people told me my son was brilliant and he was going to do amazing things some day. When he was 6 months old! When he learned to sit, he used a center split to push himself up, which had people telling me he looked like a future Olympic gymnast. You try not to buy into all that, you know your child is just a baby, but you can't help it, you start developing this image of your child and creating dreams for his future based on that.

Most parents have 18 years or more to see that false foundation crumble away. Little bit by little bit. You do figure out you can't dream up your child's future based on infancy.


What makes you so sure your boy has less of a chance than an NT to contribute something worthwhile to the human race? Especially when his intellectual and athletic gifts are already obvious? President? OK, that's wishful thinking for any parent but your son already sounds like he is a friendly little fellow, so don't assume he has no chance to develop adequate social skills.

I understand that feelings of grief, worry, and concern will be among the first emotions to come up, and those feelings should be acknowledged as a possibility. But those feelings should be met with a comforting message - not a message that feeds on fear. I agree w/Autism Speaks that information (a map, of sorts) is what parents need in that suggestible moment.....

OK, you are never going to believe this. My brother just found out, as I was writing this that his 9-year-old step-son (my nephew) has just been diagnosed by his school with autism.


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06 Apr 2014, 10:56 am

Excuse me while I go process this information. :lol:


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06 Apr 2014, 12:56 pm

First, I already knew it. Now it turns out, I was right! I told my brother a year ago, when I first learned about autism, that I think my nephew is AS or HFA, but he didn't believe me. This has been a huge frustration for me since and now I feel like I should have taken a harder stance on the matter.

In my nephew's case, not being properly diagnosed until now has been a disaster! He has been suspended from school half a dozen times and he was forced to leave one school for another a couple years ago, due to violent entanglements with other students.

Because he was misdiagnosed as ADHD a few years ago he has been treated as a hyperactivity case in the special ed classroom of a NYC Public School for the past 5 years, where he has been falling further and further behind. He has had to spend the summers in summer school and they were just about to leave him behind a grade this year. My nephew didn't talk (other than babbling) until he was 5 and still can't speak fluently in complex sentences...and he still can't read! Thankfully, his mom and my brother have always refused to put him on the ADHD medications that have been recommended!

My brother and his ex (the mom) mostly feel relieved. I asked. My brother said, "To think, of all the times I yelled at him for misbehaving." This is what I regret most too, as I remember all the yelling and stress in their household, and I even remember knowing that when my brother was yelling, my nephew was not even listening to his words. Though he seemed painfully aware of my brother's anger and disapproval in the moment, he never seemed to understand the 'Why' for these verbal punishments.

Now my nephew has been assigned an autism advocacy lawyer, who is going to see that he is enrolled in a private school more appropriate to his needs! Perhaps he will not have to repeat 4th grade? And perhaps now he will be given the resources that can make sure he learns to read this coming school year!

This is one of the best things that could have happened. Now I know my nephew a whoooollllleee lot better and I feel very blessed to have not just a nephew, but a kindred spirit, if you will, in the family.


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DW_a_mom
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06 Apr 2014, 3:28 pm

EmeraldGreen wrote:
DW_a_mom wrote:
EmeraldGreen wrote:
DW_a_mom wrote:
I guess my question is, did you find anything offensive in the tool kit? I've never read it, but I've heard it actually is not bad. If that is the case, does it matter?


It was not so much the content as the title of the tool kit we have been questioning.

People here on WP often share feelings of elation and relief about their recent ASD diagnosis - because they finally have a scientific explanation for their difference, and a reference point for understanding some of their struggles. The diagnosis also confirms what community they can look to for understanding and similarity. Nothing has changed about the child. Why shouldn't the parent feel something similar to that elation and relief? The brochure could start out by saying "Congratulations" or "Good job, you have taken a giant step towards understanding your child better, and thanks to you, your child can begin to understand himself in a way that never would have been possible if you had not taken this giant step."

I should admit that I think the whole soccer mom culture is a load of BS, so 1) I don't think the title should sound like a survivor's guide for the 5 stages of loss, and 2) I don't like the whole Day Planner aspect of this document. I am neither diagnosed, or a mom, but that's my opinion.


The thing with parents is we develop all these ideas about our infants, and society encourages it. So many people told me my son was brilliant and he was going to do amazing things some day. When he was 6 months old! When he learned to sit, he used a center split to push himself up, which had people telling me he looked like a future Olympic gymnast. You try not to buy into all that, you know your child is just a baby, but you can't help it, you start developing this image of your child and creating dreams for his future based on that.

Most parents have 18 years or more to see that false foundation crumble away. Little bit by little bit. You do figure out you can't dream up your child's future based on infancy.


What makes you so sure your boy has less of a chance than an NT to contribute something worthwhile to the human race? Especially when his intellectual and athletic gifts are already obvious? President? OK, that's wishful thinking for any parent but your son already sounds like he is a friendly little fellow, so don't assume he has no chance to develop adequate social skills.

I understand that feelings of grief, worry, and concern will be among the first emotions to come up, and those feelings should be acknowledged as a possibility. But those feelings should be met with a comforting message - not a message that feeds on fear. I agree w/Autism Speaks that information (a map, of sorts) is what parents need in that suggestible moment.....

OK, you are never going to believe this. My brother just found out, as I was writing this that his 9-year-old step-son (my nephew) has just been diagnosed by his school with autism.


Excuse me, you are reading things into this that I NEVER wrote. Of course my son has an amazing change to contribute something worthwhile to the human race. That is not the point. The point is that I thought I could know what exactly that was. Somewhere in my head I was still hoping my child could live out priorities and dreams that I could relate to, that I had formed for him.

I am sorry you don't get it. But EVERY parent goes through a mix of emotions with diagnosis. I am no fan of Autism Speaks, shoot I haven't even read their tool-kit (as I admitted), BUT you have to understand that everything is a different experience from a parent perspective than a child's one, and what we dream of more than anything is for our kids to HAVE IT EASY. Now you can't tell me that ASD makes life easier, because you know it does not. It can make life rich and special, but no one has ever claimed it is an easier life than being NT. And for everyone here happy to know they are ASD and appropriately proud of it, there ARE kids elsewhere struggling with the identity. It is one thing to WORRY your child will have struggles; another to KNOW they will have struggles. No matter how proud I am of my son, and how much I find him wonderful and fascinating, you cannot pretend that I did not have to cry with him when he had a soccer team that was refusing to understand him (thankfully we got him moved). That I did not have to spend 2-3 hours EVERY EVENING for YEARS helping him though homework that he was developmentally not ready to tackle (smart enough, yes, but developmentally - not there), so that he could keep up at the level HE wanted and needed to (the problem was not the material, remember, but the organizational skills and similar). That he choose not to go on a trip he wanted to with his classmates because he did not think he could keep from melting down during the trip. I have HUNDREDS of examples of ways his ASD made his life more complicated. I spent a decade barely breathing just helping him get past hurdles. I have always believed in him, but belief doesn't keep rocks and ruts from appearing in the road. You still have to do the heavy lifting to remove the rocks, or climb out of the ruts.

I can assure you that I am raising a child who is proud to identify as ASD, and who I am proud to have as my son. But I'm sorry you refuse to try to even understand that difficult emotions are going to be par for the course for the parent. It was MY JOB to make sure my son would have a positive self-image as someone with ASD. It was MY JOB to make sure he didn't teased into depression. It was MY JOB to make sure teachers understood him and let him chew his shirt in class. It was MY JOB to run interference so he would never know how many people don't understand ASD. It was MY JOB to keep him from giving up and checking out as some members (but more with former members, now banned) of Wrong Planet clearly have. MY JOB. You think a parent is not going to freak out a little knowing how much responsibility they have, and how the job just got more complicated? You think they are confidently going to assume they know perfectly well how to raise this child? Shoot, by the time you get a diagnosis, you already know NOTHING about parenting is a picnic, and now you've got to figure out all sorts of new things.

It was my job to shelter my son from the bad stuff until he was ready. It was my job to nurture his interests and gifts instead of forcing him into a mold. You can't pretend that everything I had to do for my son because he was ASD didn't happen, because it DID. And while I could not have told you exactly what the next decade was going to be like when I got my son's diagnosis, I did know one thing: it was not going to be easy. Sure, having the diagnosis made things a million times easier than they were when everyone saw issues but did not understand them, but it was still much, much more difficult than if I had been raising an NT child, and my son had to put his nose to the grindstone at a very young age in way that very few NT children are ever asked to (he has a severe dysgraphia co-morbid).

So, really, a parent isn't allowed to have some overwhelming emotion looking down the road at all of that? REALLY?

That does not mean we would change anything about our kids. None of us would. But loving your child just as he is does not preclude recognition that being his parent is, at times, a very difficult job.

Of course, there are times I do get it easier with him because of his ASD. I love those.


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Last edited by DW_a_mom on 06 Apr 2014, 5:27 pm, edited 3 times in total.

Waterfalls
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06 Apr 2014, 3:38 pm

Are you ok, DW?



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06 Apr 2014, 3:40 pm

EmeraldGreen wrote:
First, I already knew it. Now it turns out, I was right! I told my brother a year ago, when I first learned about autism, that I think my nephew is AS or HFA, but he didn't believe me. This has been a huge frustration for me since and now I feel like I should have taken a harder stance on the matter.

In my nephew's case, not being properly diagnosed until now has been a disaster! He has been suspended from school half a dozen times and he was forced to leave one school for another a couple years ago, due to violent entanglements with other students.

Because he was misdiagnosed as ADHD a few years ago he has been treated as a hyperactivity case in the special ed classroom of a NYC Public School for the past 5 years, where he has been falling further and further behind. He has had to spend the summers in summer school and they were just about to leave him behind a grade this year. My nephew didn't talk (other than babbling) until he was 5 and still can't speak fluently in complex sentences...and he still can't read! Thankfully, his mom and my brother have always refused to put him on the ADHD medications that have been recommended!

My brother and his ex (the mom) mostly feel relieved. I asked. My brother said, "To think, of all the times I yelled at him for misbehaving." This is what I regret most too, as I remember all the yelling and stress in their household, and I even remember knowing that when my brother was yelling, my nephew was not even listening to his words. Though he seemed painfully aware of my brother's anger and disapproval in the moment, he never seemed to understand the 'Why' for these verbal punishments.

Now my nephew has been assigned an autism advocacy lawyer, who is going to see that he is enrolled in a private school more appropriate to his needs! Perhaps he will not have to repeat 4th grade? And perhaps now he will be given the resources that can make sure he learns to read this coming school year!

This is one of the best things that could have happened. Now I know my nephew a whoooollllleee lot better and I feel very blessed to have not just a nephew, but a kindred spirit, if you will, in the family.


We caught my son's ASD LONG LONG LONG before any of those types of things happened. Of course ASD is better than a behavior problem. But I always knew my son did not have a behavior problem (even if there was that one preschool that tried to suggest he did - I knew it was them, not him). I wasn't worried about his future when he was a toddler at all. He was smart. He talked early. He was energetic and a dreamer. I was never worried.

Until he got to school and had to try to learn to write. He basically started refusing. We only know he is ASD because that was backed into searching for an answer on the writing issue.

I needed an answer for that. And I was starting to see worrying differences, but he was still social and making friends. Nothing like your nephew went through. Getting the ASD diagnosis really was, for us, the first time we realized without a doubt that our son was not going to soar through life on the gift of his energy and talent. The first time we realized that he was likely to face real challenges. I knew the title was right the first time I researched it but, still, I was never prepared for that.

I am really glad your brother has gotten your nephew a diagnosis. Hopefully they will connect to the right resources and learn to parent in the way your nephew needs. You are right to say diagnosis is a key. It will be. But don't be surprised if you see mixed emotions from your brother and his wife. Don't discount them. Just let them process as they need to. It really doesn't help anything when you feel one way and people tell you that you should feel another. Most people already are aware of that disconnect in themselves. They want to understand it, not be told it is wrong.


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06 Apr 2014, 3:45 pm

Waterfalls wrote:
Are you ok, DW?


lol a little crazy at the moment but I'll get through it. I really really should NOT be on the boards. WAY too much to do!
And I don't post my best at these sorts of times.


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06 Apr 2014, 6:23 pm

DW, I think I understand now why it is so important for that moment of diagnosis to be for you, and not just all about your son. I am sorry I offended you. You sound like a wonderful, amazing mother and any ASD kid or kid would be lucky to have such a caring and responsible mom. Maybe the tool kit should acknowledge the parents even more!

It sounds like I haven't been clear, but my point is: ALL the various feelings that are bound to come up in the moment when a diagnosis is given should be met with the strongest, most positive, hopeful, informative and supportive message possible. The message should not presume grief, but it should acknowledge it.


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07 Apr 2014, 12:02 pm

Sorry for coming on so strong. But sometimes it feels like that is the only way to get heard.

I appreciate that you do want to understand, I do.


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