Should I seek a second opinion?

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DW_a_mom
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27 Sep 2016, 5:41 pm

sagerchatter wrote:
DW_a_mom wrote:
My advice is to identify the patterns preceding the behavior. My son, for example, would start to appear more excited and engaged, but would also be increasing his efforts to gain control of the situation (giving out more directions, trying more and more to direct the actions of those around him, or might start actively trying to change the physical landscape literally moving objects, etc). His eyes also changed. To everyone else, he was playing and having fun, and the eventual outburst came out of nowhere. I learned better. Eventually I learned to redirect him out of a situation if I started to see those signs, so that he could regain control before acting out.


I can totally picture what you're describing. I'm going to start paying closer attention!


Good luck!


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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).


sarag1989
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27 Sep 2016, 8:35 pm

DW_a_mom wrote:
I do feel I spent too much time in my son's preschool years worrying and not enough enjoying. While we didn't know he was ASD, we did have a sense "something" was up. That is why I try to get parents to hold off the intensity just a little longer, if I believe their child's issues can handle it. I know early intervention is practically magic in many cases, but your son isn't showing the issues early intervention is designed to address. The time you will need to work the most intensely with him most likely lies ahead, multiple years off. What he needs the most right now is to thrive as his unique self. JHMO.

My son is a success story, but he has also been molded by society. The purity of who he once was is, by necessity, gone. There is a loss there that, while necessary, does make me sad. Hence, my opinion that when you have time to wait, you should wait.


There is a lot of wisdom here, I think. In my heart of hearts I believe all of this to be true, and our daily life reflects that. Being home together is good. I'm realizing, though, through musing over the beginning of this thread to now, that a lot of me seeking a diagnosis/second opinion is because I truly, deeply feel that "something is up", and for various reasons (that I am aware of and have conflicting feelings about) I seem to need to have that validated. That's about me. I don't know what the consequences of the label are, especially at this age. So seeking that out, when it's really more or less about me at this stage of his life, may not be fair to my son.

I think there is something about the label that gives identity to the situation, and there is something that feels safe about that. To be able to be on places like here, for instance, and feel like you're "guaranteed" a community of people who accept that you belong with them, or perhaps like the parent/child groups other people have told me about, comprised of kids with various diagnoses... There is a longing for that. Because even here of all places, where I have been clicking through posts for the last few days, I have come upon multiple threads of people asking questions and others responding to them with questions like, "Why do you list "diagnosed" in your profile when you aren't? Sorry, but that just really annoys me." Threads where there are people with diagnosed ASD responding to people who think they also have it with skeptical or exclusionary language because they are just "self-diagnosing". So, at least according to some people, there are standards even on this website, as well. It's hard to be in the middle. I've watched the judgment and distancing begin among a fair amount of people in our life with their "normal" kids or their "elder's wisdom", and on the other hand, my son and I don't really have an entryway into the world of people on the spectrum, either. There's always a battle against defensiveness toward everyone in such a situation. I suppose that is just the nature of it, though.

I truly appreciate your taking the time to respond to all of my questions. I will be giving your responses a lot of thought, to be sure. I know I will come back to read through this thread frequently as time goes on. I see you are a "Veteran" on here- that's such a gift to everyone; those of you who take the time to engage in all of these discussions with complete strangers are truly doing good works.



DW_a_mom
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28 Sep 2016, 1:10 pm

sarag1989 wrote:
DW_a_mom wrote:
I do feel I spent too much time in my son's preschool years worrying and not enough enjoying. While we didn't know he was ASD, we did have a sense "something" was up. That is why I try to get parents to hold off the intensity just a little longer, if I believe their child's issues can handle it. I know early intervention is practically magic in many cases, but your son isn't showing the issues early intervention is designed to address. The time you will need to work the most intensely with him most likely lies ahead, multiple years off. What he needs the most right now is to thrive as his unique self. JHMO.

My son is a success story, but he has also been molded by society. The purity of who he once was is, by necessity, gone. There is a loss there that, while necessary, does make me sad. Hence, my opinion that when you have time to wait, you should wait.


There is a lot of wisdom here, I think. In my heart of hearts I believe all of this to be true, and our daily life reflects that. Being home together is good. I'm realizing, though, through musing over the beginning of this thread to now, that a lot of me seeking a diagnosis/second opinion is because I truly, deeply feel that "something is up", and for various reasons (that I am aware of and have conflicting feelings about) I seem to need to have that validated. That's about me. I don't know what the consequences of the label are, especially at this age. So seeking that out, when it's really more or less about me at this stage of his life, may not be fair to my son.

I think there is something about the label that gives identity to the situation, and there is something that feels safe about that. To be able to be on places like here, for instance, and feel like you're "guaranteed" a community of people who accept that you belong with them, or perhaps like the parent/child groups other people have told me about, comprised of kids with various diagnoses... There is a longing for that. Because even here of all places, where I have been clicking through posts for the last few days, I have come upon multiple threads of people asking questions and others responding to them with questions like, "Why do you list "diagnosed" in your profile when you aren't? Sorry, but that just really annoys me." Threads where there are people with diagnosed ASD responding to people who think they also have it with skeptical or exclusionary language because they are just "self-diagnosing". So, at least according to some people, there are standards even on this website, as well. It's hard to be in the middle. I've watched the judgment and distancing begin among a fair amount of people in our life with their "normal" kids or their "elder's wisdom", and on the other hand, my son and I don't really have an entryway into the world of people on the spectrum, either. There's always a battle against defensiveness toward everyone in such a situation. I suppose that is just the nature of it, though.

I truly appreciate your taking the time to respond to all of my questions. I will be giving your responses a lot of thought, to be sure. I know I will come back to read through this thread frequently as time goes on. I see you are a "Veteran" on here- that's such a gift to everyone; those of you who take the time to engage in all of these discussions with complete strangers are truly doing good works.


I'm a veteran who hadn't visited for months. I also spent several years as a moderator here, which is why you can still find stickies with my name on them. I am proud of the work we did here on this parenting board. We developed a lot of protocols that are now widely accepted in this country. I don't know if we had any of those ideas first, or if anyone actually got their ideas from us - it probably all developed concurrently - but it is validating. Still ... Life spaces change and as my son's issues have become more distant, I've turned my energies elsewhere. But feel free to pm me anytime, if I'm not visiting in the board in the same time frame you respond.

I understand the need for identity and community. While the tone and community may have changed since I was active, I do not believe that this board, the Parenting board, cares about the labels. Here we were always just trying to figure out how to be good parents and it was helpful to have people who seemed to have shared experiences and emotions. It is the shared experiences and emotions that create the community, not the label.

Without having seen the threads elsewhere that you mention, I'm going to guess that you've misunderstood the issue this community might have with someone choosing to give themselves an incorrect label. ASD individuals, by and large, are deeply rooted in facts and logic; that is something you will have to understand at a core level as a parent. Choosing a clearly in-precise label would mean that you've violated one of the most commonly shared tenants of an ASD mindset: being factual at all times. No one here ever cared that I identify as NT; they cared that I be HONEST about it, and not to try to pretend I know things I couldn't possibly have experienced myself. You might also be surprised to realize that most of the members don't seem to need the profile identifier to know who is NT and who is ASD; they can often tell from the writing. Apparently us NTs tend to have a qualitative difference in our writing from most Aspies. Or something like that ... I don't see it as easily as they do. They didn't mind that, either, as long as I never pretended to be something I wasn't, and as long as I tried to speak factually and logically.

They also expect to be called out on factual errors and imprecise speaking. It's what they do. They are precise and logical, and they need those around them to be precise and logical. The downside is that no one's spider instincts are perfect, facts can be more fluid than they appear, and members may well call out someone who is actually being honest; at Wrong Planet no one is afraid of saying what they think, dropping all social formality, which can be good and can be bad. You learn to roll with it ... or ask a moderator.

This board, the parenting board, is different from the rest of Wrong Planet. Most of the broader Wrong Planet community is aware that more NT's "live" here, and that the communication style is a little different. They try to adapt when they visit for the sake of the ASD kids, although some attempts to adapt are more successful than others. It's all good; it is how we learn about each other.

Anyway. I do hope you have found a home here, regardless of what diagnosis your son eventually receives.


_________________
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).


Last edited by DW_a_mom on 28 Sep 2016, 4:00 pm, edited 2 times in total.

sagerchatter
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28 Sep 2016, 9:18 pm

sarag1989 wrote:
Actually, I wanted to thank you for being brave enough to tell me that you chuckled at the descriptions I had written of him. I could keep saying this so many different ways, but for someone who is seasoned in this stuff to read it and react that way feels so much better than the opposite that I get almost daily in life (and sometimes it is me reacting this way): reactions first of shock, and then wanting to make an excuse ("He's just spoiled"), and then getting annoyed when the behavior isn't going away, and then retreating and distancing emotionally. I watch it happen with acquaintances and family members and it is painful, but even more painful when I realize that I've done it to him myself. I can promise you, I will remember your post in my times of frustration and your reaction alone will help me to respond appropriately and with a lighter heart :heart:


You've made my night! Your son sounds charming to me! I completely relate to what you're saying about the reactions of friends, strangers, acquaintances, family members. It's exhausting and isolating. When someone points out the same wonderful things in your kid that you see, it's exhilarating!

Several months ago, after a long conversation about how exhausting it was to manage him outside the home (never mind inside, but at least I don't have an audience for that), my sister - who has raised three children, all of them young adults now - told me "You don't have to explain your son to anyone. He is who he is, and he doesn't need to be explained." She was speaking, of course, not only about strangers in the park or the store, but about acquaintances, friends, all the way up to and including family. Some people get it, some people don't. It was one of those things that changed my perspective. They don't - and we don't - owe anyone an explanation. :)


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40-something adult woman childhood diag. ADHD, suspect Asperger’s/ASD in place of or in addition to ADHD