Got the diagnosis today

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Heard the actual words from the Dr's mouth today.

Even though I knew it, I knew it, I've known it - I still feel stunned. Emotional upheaval that I didn't really expect. It's surprised me, all the emotions this has brought on.

Mostly guilt. I don't know why, but I"m looking back on everything wondering what I did.

As a Mom, everything that happens in his life happens because I cause it. Even his very existence, if I had chosen not to have him, he wouldn't be. If I hadn't avoided all alcohol, he wouldn't be who he is. If I hadn't taught him not to bite, he would still be biting. If I hadn't bought his clothes, he wouldn't be fashionable. If I never took him to McDonalds, he wouldn't love cheeseburgers. If I didn't buy that box set of Fraggle Rock, I might still be sane...

I'm just sayin'.

There's some guilt. I must have done something. Or maybe it's just my genes. Maybe my messed up DNA.

It's not that... I have a 'problem' with the idea of autism. I enjoy him very much and I think he's super smart and caring and lovely.
It's the world that he has to deal with that makes me cringe about the whole situation.

When I had him I knew that he was a person, and every single person has some difficulty. At some point in everyones life, something will be your challenge. That's what people are, and there's nothing unusual or wrong with that.

It's just that... I was hoping his particular issue would hold off until he was, like, nineteen. Or thirty-five.

He's only 7.

He just wants friends. He wants to understand what to do in school so that he can have friends and do work people will praise. He's completely lost and it's not fair for that to happen to him when he's only seven!

I'm mad at Asperger's for that. I'm mad that it's making him sad, and making him feel bad. I'm mad cuz he's a great kid who feels like he's a loser and somehow that's just got to be my fault. Even if I haven't figured out how yet.

It's going to be my new goal (now that my old one of 'getting a damn Dr to listen to me and not brush me off ' is reached.) to find a way to make school tolerable for him.
To get him to read.
To make him less afraid to try.
To explain enough so that he can understand, and accept, himself.
To stop him from feeling so bad.
To help him learn how to make a friend.
To find him an enjoyable childhood and, hopefully, adolescence too.

I am responsible for him. I guess that's why I feel responsible.

*thanks for listening*

I feel for you and I wish you and your little boy the best.

The words are hard. Not so much the word, "Aspergers," as everything they tell you in one of those meetings. It is entirely one thing to feel, even know, something is different, than it is to sit in a meeting and hear it all in official clinical terms.

We've all been there.

Allow yourself to feel the full roller coaster of emotions, and then get back to the work of being mom. You'll find that, in many ways, your job has just gotten easier, because with all those nasty clinical words come keys. Keys that give you leverage. Keys that help you understand.

But, yes, the final nail in the coffin of our misplaced dreams for our darling little babies is hard to watch. I saw my infant do a center split to learn to sit up and thought I was about to raise a gymnast. Well, I didn't have that quite right; it was a sign of hypo-mobility, and all sorts of coordination issues yet to come. Every parent goes through some version of it, but ours comes with a big, loud, slam.



And then ...

you start to build new dreams. The ones your child dreams, and that you can encourage and nurture. Those may yet get slammed on, too, but life is nothing without dreams, and these are richer because this time they come from your child.

Hey, many of us have made it well into middle aqe before we ever heard a Doctor say the magic words that explained why we'd felt like such outcasts for so long. I don't blame my parents, they made the best of my inability to conform without having any idea why I was the way I was. Yes, I was pushed to do things I wasn't able to do, yes I have been ostracized and excluded for not being like everybody else. I still am. But I don't blame my family - they did their best to try to help me conform, not knowing that I couldn't. I made the best of what I had and in spite of the disability, I've had an okay life. Parts of it have sucked, no doubt, but it is what it is. I'm still smart and creative and muddle my way through and that's what every human being does.

Just be supportive and learn about the disorder so you can recognize where and why problems occur and try to be patient. The hardest thing we deal with is that we look normal on the surface and that tends to make those around us impatient and judgmental when they can't understand why we can't always do day-to-day things as easily as they do. That's the thing we need most - people who don't demand that we conform to their standards - I can do pretty much anything anyone else can do, sometimes I just can't do it their way.

And I can't understand why they can't see that often, my way simply makes more sense.

Hi Vivienne, our (almost 7 year old) son's Aspergers diagnosis is pretty new for us too (February). I was recently the guest blogger at www.hartleysboys.com where I was asked to write about how we got through that initial diagnosis. If you'd like to, you can read it here: http://www.hartleysboys.com/2010/04/we- ... itlin.html

I also blog about many of the issues you are describing with your son, and share resources and strategies at www.welcome-to-normal.com

I personally found the diagnosis (after we recovered from the initial shock) to be very empowering, insofar as it allowed us to customize our research and narrow down a plan for Simon, in terms of what his primary goals were and how to gradually work toward them - and conversely - what we needed to let go of and accept as part of who he is.

PS. you write very eloquently

I was in occupational therapy and a smaller classrooms by his age. Though I cant say how the adults in my life must have felt, I can tell you it was not personally a big deal to be different unless they made it seem that way.
In my case, I had no problem socializing with adults; I was one of those kids that connected better with them than kids my own age. For us, the impact that this difference has never really occurs to us at the time-- I had almost no friends, but I was content at the time, because I believed that the adults there to help me were my friends. There was no sense of loss.
Another thing, is the only way he could "feel like a loser" is if other kids made him feel that way, as I am sure his parents dont. Find ways to encourage him, and help him develop his interests, so that he wont feel like he must fit-in, because that's not always a good thing.

*tried to delete*

Last edited by adora on 26 Apr 2010, 5:41 am, edited 1 time in total.

I feel for ya darlin.
I was going through exactly what you are feeling now just a little over 2 mo ago. I kinda felt like my world fell apart.
But its 2 mo later, and it doesn't feel as bad now, if at all.
I know you won't find much solace in these words right now, but in time you will, and you'll repeat them to the next mom in here, All the diagnosis is, is a name for what you already knew was there, and, take it one day at a time. In other words, don't think too far ahead, its kinda overwhelming.
But welcome to Wrong Planet, you're among friends, people who know what you are going through, and won't hesitate to help you out.

/hug

funny how its one thing to know something in our heart, and quite another to have a "medical professional" confirm what we already know. that makes it official, permanent. that little niggle of maybe-im-wrong is gone.

over the next couple weeks i hope to be sitting in your shoes. strange to say i hope that, but i know its a hurdle we have to jump. just one step we have to take along the journey. im not sure if you need it, or if most parents need it, but i know that I need it. my child doesnt care, my SO doesnt care, but i just have to be sure. i need to get rid of that niggle, extinguish any tiny spark of hope that im wrong, so that i can fully move ahead.

and you are right about that world out there. the dx doesnt change your child, but it sure makes that world a much scarier place, not to them, but to us.

The best advice I got was from another mom of a "special" kid.
She said (to paraphrase), "It's an unending grieving process. You are grieving the life that you thougth you would lead. Your entire life you have been working towards something, degree, career, family, and in all of that there is an image you have of what the end goal will look like. That end goal is now gone. It's not bad, because there is a different end goal, which is just as good, maybe better than the first, but you will still grieve for that life long dream which is evaporating."

I think that's the best way to explain it. At times the new dream is SOO much better than anything I ever could have imagined!! Yet, especially in the beginning, when everything is still somewhat unknown, it's overwhelming to let go of everything you thought would have been.

Let your body just feel the emotions. You will have periods of grief, and periods of what would life be like if..., but it's really not that much different than being rejected from your first choice college and having an even better time at the college you get into, or like being a teenager with a massive crush on a guy who ends up dating your friend. At first the news is pretty devastating, then you get a bit wistfull with the what if's and then you settle down and realize the life you actually are leading (albeit unexpected) is pretty great.

The guilt we feel is so deep and so terrible. We want life to be as wonderful for our kids as it can possibly be, for as long as we can keep it that way. And then reality happens

Things will get easier to accept and the road through life will bring just as much joy-- just through different adventures

Remember, it's autism. It's not the end of the world.

As hard as it is to do, please do not blame yourself for this. You sound like a very loving and caring mother, and nothing you have done has caused this. It just is----

My son was diagnosed at 2 1/2 yrs old, and I knew something wasn't going right from about a year old. He is now almost 5, and I am amazed at how far he has come. I still have days when I still don't want to accept his diagnosis even though it has been over 2 yrs. But, for the most part, I try to be as positive as I can, and just love my boy unconditionally, and teach him the best I can. I think that makes a world of difference.

Just try to realize that he is a wonderful and unique creation of God, and you were given the honor of being his mom and trying to help him make his way in the world.

Also, what I have had to realize is that my son really has very little desire to have friends at this point. Even though it totally breaks my heart, I know that for him to want a friend has to come from within himself. If I push too hard, it will probably make things worse. So, I just do the best I can getting him around other children and gently encourage it, but don't force it. I guess the reason I am saying this is because it sounded like you were going to take everything on yourself to make his life turn out okay, and at some point, we have to just do the best we can and then let it go. That is definitely what I have struggled with, but am getting better at.

I think now that you have the diagnosis, you can get him on the right track to learn the skills that he will need to be
successful in life. Just hang in there and allow yourself some time to grieve and have a good cry if you need to. ;

Best wishes to you and your son!