Why does my brain get it but my heart doesn't.

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I have a 8 almost 9 year old that was diagnosed with Aspergers a week ago. We suspected it for quite a while before getting the diagnosis. I immediately dove right in getting meetings set up with his school, finding an individual and family therapist and an occupational therapist. Now today I just can't quit crying. I mean nothing has changed, he is the same wonderful boy and I love him so much. I feel like my brain gets it but my heart hasn't quite adjusted yet. If someone is sympathetic I am ticked off because my son is awesome and I don't need to be felt sorry for and then if they show no sympathy I want to scream "this is a big deal you don't get it!" Basically I just feel like I am being a jerk and I don't know where all these feelings are coming from. Anyone else feel this right after a diagnosis?

What changes, when you have the diagnosis, is what you dream for your child. When my son was a baby, for example, we were joking about his future Olympic prospects, because he was so amazingly flexible. What I discovered with diagnosis is that he isn't flexible, he is hypermobile, and that the condition actually causes him problems. Oh, and the way he didn't need much sleep, and never acted shy around anyone ... perfect skills for a future President, don't you think? Not that I ever actually thought he would be an Olympian, or President, but there was this vision of a talent, that obviously I had missunderstood. He has different talents, amazing ones, but not the ones the world was assuming he would have based on the early evidence. So ... your dreams change. How you see the things your child does change. And with all the positive discoveries (and they exist), there is also the loss of dreams you once harbored in the back of your mind, that you now, suddenley, fully realize will never be. All parents go through that, of course, but normally it is something that inches up on you as the child grows up, while with diagnosis it kind of smashes on you. So even though those dreams were never your child, and nothing about him has changed, you feel like you have lost something, and you need to allow yourself time to mourn it. That was, anyway, the conclusion I came to about my own feelings. Experiences may vary Does that make sense?

Thank you, yes that is it. Seems silly that I couldn't quite figure it out on my own but that is exactly it. What is to say he won't still do amazing things, it is just that they may not be the things I once thought. I am about as good with change as my son is so I guess we will all be adjusting.

Funny you said he didn't need sleep, my son never did either and when my younger child was born and slept all the time as a newborn I thought something was wrong with him.

Thank you for your post it is just nice to not feel alone.

Can l also say you are grieving and people grieve in different ways. People think you only grieve when someone passes away but grieving can be over any upsetting change/challenge/loss in your life. Let the tears flow as that is very normal and healing.
Can l also say that every achievement your boy does will be even more extra special now as you know how difficult it may of been for him.
A specialist said to my DD lately that a lot of people with aspergers live successful life's as they have unique special qualities that others may not, l thought this was encouraging to say to our DD instead of looking at it being a negative thing.
Be kind to your self and be easy on people around you too, some people don't know what to say. Share your feelings with DH or a close friend as you come to terms helps too.
My heart goes out to you as will the others on the forum as l'm sure they remember clearly when their child was diagnosed too

Well on the whole adjusting your dreams thing, I'm going to study medicine. It's not exactly running for presidency but it's not too bad is it?

I agree that there is a sort of grieving period, although we dont have an official dx yet I think Ive already been through that and will be releived once the dx comes through. There was a certain feeling of disappointment, only because I can only see her life going in a similar way to how mine has, I can only parent the way my parents did, and all that has changed. I have to parent differently and she will grow up in a different way to how I did. I dont yet know the extent of her problems as shes only young. But as its been said earlier in the thread all parents will go through this, you see parents pushing kids to be what the parents once aspired to be but the kids may not have the same idea and rebel.

Im sure this will pass and you will soon be able to get on with your lives

@psychegots, AGREE, not too shabby Adjustment doesn't mean I think it will be lesser, just may have to take a different path to get there.

Thank you all for your comments. I am feeling much much better today. Crying jags and venting to a good friend helped. Ready to get back on task and work for my son. I was an over extended mom to begin with so the first thing I am doing is finding which voluntary obligations I can politely bow out of. Trying like mad to find a good therapist for him and our family as well as an occupational therapist for the dysgraphia. Also, feeling proud that even before diagnosis I stood up for him on the handwriting...was a major issue this year in 3rd grade. He comes from a long line of messy handwriting and come on, pretty much everything is typed these days.

Thanks again everyone!

psychegots, please understand that we are not mourning for our children like we think they are never going to accomplish anything and that their lives are a lost cause. Its hard to explain. While the dx came as a great relief for me in a lot of ways because, for one thing, it helped me realize I wasn't a terrible mother though I did need to change a lot of things about the way I was parenting my child. The dx meant there was a good reason why the things that had worked with our older NT son did NOT work at all with youngest. An autism dx also brings fear because we as parents don't know what it is going to mean for our kids. What kind of struggles will they face, will they be bullied relentlessly, will they eventually become independent? These are things we somewhat take for granted with NT kids. When my son got the dx at 4 yo, there were a lot of unknowns for us (well there still are but I am pretty sure that he will become independent). There were a lot of strong emotions. On the one hand, its just a word, a label but on the other hand, it is the rest of their lives. The parenting books many of us read when we were beaming expectant moms-to-be didn't really prepare us for the news that our sweet offspring has an uncurable condition that will have an unknown affect on the lives of our entire family.

The raw feelings get a little less raw with time. I still have deep pangs sometimes as I watch my son and I think that due to his low degree of interaction with people that his gifts will not be appreciated by very many. But then maybe that doesn't matter much, if only a few people ever really appreciate him for who he is, they will be very lucky folks indeed.

Do you think it is just disgraphia, or is there evidence of hypermobility/hypotonia, as well?

That was a HUGE issue for our son, driving the whole diagnosis process, in fact. All we wanted was for the school to do something or allow him some accomodation, as it became evident that writing was literally painful for him.

He is now touch types and is allowed a netbook at school for all writing and note taking.

Very rough outline of our journey:

Elementary school: We would have him handwrite anything that was short, but used mostly dictation (scribing) for anything longer, to allow him to focus on content and structure. On homework, what he wrote v. what we wrote for him was 100% in our discretion.

Middle school: OT taught him to type (before 6th grade his hands were not developmentally ready), and he was programmed into an academic support period to allow extra time for completing and editing his writing assignments (much better to let the school monitor it; the finished product would look so different from the first pass that they understandably wondered who had written it). The work is tedious, learning to type and edit; having it be a school class also helped keep him at it. For class, he was given an Alphasmart.

High School: We still help proof read (he can't catch the misuse words on his own yet), but otherwise he's on his own and very comfortable writing on his netbook. He's even written a full play and has started writing a book.

I "get" what you're saying, but still I cant understand it. I understand being shocked before you know what it really is, I understand being sad about low functioning autism, but you're "everyday" Aspergers diagnosis? - No I do not get that. There are so many successful people out there with Aspergers! I'm going to be a father soon myself and I would not think one negative thought about a diagnosis for my kid. It's often a different perspective on life, but not a lesser one, and not something to be sad about. And I find that most of the time parents make more trouble about it than what is necessary (no offense, I know most mean well). For example; why make a big fuss about a child having very few friends if they are perfectly happy with that? I would not have wanted anymore friends growing up if you served them to me on a silver plate, I had (in my opinion) much better things to do!

It doesn't have to make sense to be real, and pointing out that it doesn't make sense doesn't help anything. Simple reality, for most parents, diagnosis of any sort with respect to their children carries a mix of emotions.

And as successful as your life has been, a quick spin around the forums makes it clear that for many people with ASD, success will not happen, and that the issue IS the ASD. You don't know, of course, if any child will be successful and happy, but having ASD adds known roadblocks into the process, and makes future results a lot less certain. Plus, most parents get a diagnosis because their child IS struggling, and they start from a place of emotional vulnerability as a result, so even if they had just been told the issue was a 200 IQ you could expect them to need to release some negative emotions. All this is something a parent new to the diagnosis has to grapple with.

Most people cannot logic away emotions; they are real and they need to be dealt with. That is why this mom posted; her logic knew one thing, but her emotions were going somewhere else. Understand this: the sort of conflict she described is NORMAL. It doesn't have to make sense, it just needs to be recognized so that it can be properly dealt with. Believing a child can have a successful life like yours is in the end of the process; not the start.

My son has gone through some very painful struggles that are either the direct result of his ASD, or a co-morbid; learning to write, for one. The times he has been teased or clueless. The sensory issues that make it impossible to enjoy certain activities he is actually very drawn to, and wishes he could enjoy. The amazing artist eye that his hands will not work onto paper. As a parent, I feel each and every one of those with him. Yes, the ASD has given him gifts that he is proud of, too, and he is, overall, comfortable in his own skin (no one, after all, gets "it all,"), but that doesn't stop those moments of disappointment from finding him. He's going to be OK and happy, I know that NOW, with him graduated out of most of his services, but as much as I BELIEVED in the earlier years, I couldn't KNOW, and sometimes things were really, really difficult.

That sort of freaked me out. I just wrote the other day (Did you read it?) that I do not understand this exact thing. Too know that a feeling is illogical, but still feel it. But I did not recognize that here.

Didn't mean to freak you out! And I totally lose track of what has been said or by whom ...

Heart v. head (the title of the thread) is a common way of describing something where emotion is in conflict with logic. I do think my ASD son has experienced it, although probably not frequently, but I also think he does try to logic it away, and may have some apparent success with that. It is clear that with him logic is what he uses to ground himself in the world, so when there is other input I would guess that he might feel forced to discard it using one of the many internal rules he has written for himself, even if that isn't really the best thing to do. He seems to have amazing control over what he feels, in a way I cannot relate to. So, I can see why the concept might not sit well with you. I do think this is all very different with NT's; the emotion can come before the logic, and I honestly don't feel like I have much control at all over what I feel; the thought of even trying to control it feels alien to me. I've never assumed that emotion and logic have to match. I'll always seek to understand the differences, but I don't start from expecting a match. And I'm not even sure I'm NT! Sigh. Sorry for rambling ... I'm doing two things at once, so hope I wrote this right.

I have a different take on this whole thing that I'll write here for the folks who are reading this thread that might be sharing my experience: we got a very stupid and bad diagnosis of AS for my son in 1st grade, so stupidly done that I just plain didn't believe it (a large part of it was based on the fact that he was talking "like a robot." He was imitating (probably scripting) a cartoon, so he didn't ordinarily talk that way. Plus, they just gave him a label and then shrugged their shoulders and walked away without offering services, which wasn't helpful either.) The one good thing is that bad diagnosis kind of gave us time to process the possibility and the whole idea without it being the full-immersion shock most parents get.

We had known since DS was three that it was something; we just couldn't figure out why our extremely bright and friendly son who was interested in the world around him would suddenly lose it on a nuclear level when we asked him to put on socks or come to the dinner table. We assumed it was bad parenting somehow, but despite all my searching and researching and reading and asking for help, we couldn't figure out what it was we were doing wrong.

Finally, DS started to crumple and fall apart under the strain of not being appropriately supported and I started to think maybe the AS diagnosis was right even if the people who labeled him were, well, idiots. We finally took him to a hospital and got an appropriate diagnosis of AS, where they didn't fall for his happy grin and friendly attitude and they pieced out for us EXACTLY what the specific deficits were.

At this point, I fell totally apart. Not because I was grieving for the son I thought I had (which is not to say this isn't a legitimate thing to grieve about, and which might be buried in there somewhere) but because I had been flinging myself at a brick wall for seven whole years (we started asking for help when DS was 3, remember) without allowing myself to feel anything at all, because I had to keep the emotional resources to get up and do it again the next day. I was furious with the system that had so failed us, and livid that my beautiful, perfect smiley baby son was now suicidal, and angry that I had missed so many of the now-obvious signs, and scared that we would not be able to pick up those pieces and put him back together again. What made it even worse is that I had gone through much of this myself as a child, and I had vowed as a mother that it was NOT going to happen to my kid. But it had.

I was also incredibly, heart-wrenchingly, gut-twistingly RELIEVED. That feeling was almost intolerable because it was something I had been yearning for almost since my son was born, and something I felt oddly guilty about feeling.

It was a LOT to process, and I am still processing it.

Thanks for sharing. It's really interesting. I can't remember to have read other peoples experience with this "difference" in thinking/feeling, would be interesting to start a topic on it. But the last topic I started did not turn out very well so, I'm not going to go there again

Maybe people do not like to talk about controlling emotions (or lack of dominant emotions) since a lot of the general public mistakingly assumes it has to have anything to do with psychopathy?

Probably because we are expected and taught to think differently about people who have certain dx's etc. I don't know why we are expected to do that because it doesn't make a bit of difference usually, but it's like if you had found out very early and he had grown up this whole time as a "special needs kid" then you would have that label on him in your mind, but as it is you haven't had him labeled that way and probably feel on some level now that he is a "special needs kid" (or whatever label type thing you want to use in your mind as a catagory) and the label doesn't "feel right" or doesn't feel like a good "fit".

I think it's because it's something that has always been there too, not something that he's just developed or something that gets worse with age or even something that resulted from an accident, that it's hard to recatagorize him in your mind.

The good news is that you don't have to. Most people just naturally have preset catagories in their minds (conscious or subcionscious) and file people into them when they meet them or when something obvious changes. It's not a requirement to do that. I'm 48 and wasn't diagnosed until a few years ago. I was dx'd in my 40's and by then I was comfortable enough with myself to not worry about changing anything in my life or relationships because of it, but simply said "Oooooooh, THATS why I do this or that or am this way or that way". It didn't change my perception of myself one bit. I'm sure it would put me in a different catagory if I introduced myself to someone new and told them I have AS. I would go into a different catagory than I otherwise would have, and might even be recatagorized by friends if I was actually "out" about my AS.

So, basically I don't think you need to worry about how you see him or feel about the dx. He's still the same kid, he's the exact same way today that he was last week, and the only difference is that now you have an explination for already existing behaviors and thoughts and beliefs and moods etc, and you and he can find many available methods and tools to help him deal with aspects of AS that bother him (or others).

Don't beat yourself up for not feeling completely different or for not feeling like a parent whose child was dx'd as a little kid. You are you, he is himself, and it is what it is. However you are feeling about it is the right way to feel.