MBA Mommy

Part MBA, Part MRS, Part MOM…..All ME

I Know How I’m Going To Die

Posted by mbamommy on July 16, 2010

Ominous title, isn’t it?  And attention-grabbing, I hope.

It’s also true.  At least, I’m pretty confident in that prediction…or as confident as you can be in predicting about the future.  You take what you know and fill in the blanks with best guesses.

You’re probably thinking…. “But, MBA Mommy, HOW do you know how you’re going to die?  Did you create some statistical algorithm that would give Google a run for its money and can predict the future?  Did you look into a crystal ball?  Oh, I know! You bought one of those Magic 8 balls!”

No, dear reader.  Nothing as scientific as any of that.  My prediction is based on fear.

You see, there are two things in this world that I have both a morbid fascination with and an irrational fear of: tornadoes and autism.  Actually, I should probably throw in the Holocaust as being a morbid fascination but I don’t think it qualifies as an irrational fear given I’m not of the Aryan race.  And, I should also admit that I have a fear of cochroaches but that’s definitely NOT irrational….have you ever seen anything grosser?  Ugh, it gives me the heebie jeebies just thinking about them.

But, I digress.  You see, I know I’m going to die by tornado because my son….my beautiful, intelligent, willful, funny, independent, pain-in-the-ass Z…was recently diagnosed with the big A….Autism.  To be specific, he was diagnosed with “behaviors consistent with the diagnosis of high functioning autism”….or Asperger’s Syndrome.

So, there it is.  My whole life has been turned upside down, inside out and backwards.  Including my blog.  No longer will the “MBA” stand for Master’s in Business Administration.  I’m hanging up the professional 1/3 of me so I can focus on the new definition of MBA: Mom of a Boy with Asperger’s.  At least until I can get ensure my family is doing the following:

“If we are facing in the right direction, all we have to do is keep on walking” ~Buddha

Please join me on this new road.  I’m looking for support and advice and a way to give back to those who have done so for me.  You can read the whole diagnosis story if you’re so inclined.  Start here.  Then go here.  And finally here.

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21 Responses to “I Know How I’m Going To Die”

  1. Liz said

    Wow! That is heavy news. My thoughts are with you and your family. Take care of yourself so you can take care of your family!

    • mbamommy said

      Thanks, Liz. Yeah, it was a bit of a blow for us but we’re thankful that we at least know what’s going on and can address it. And, yeah, I’m definitely taking care of myself (working out, eating right, sleeping, talking to people, etc) because if I didn’t there’s no way I’d be able to handle Z.

  2. Jemima Aslana said

    Why do you have an irrational fear of autism?

    It’s hardly the end of the world…

    • mbamommy said

      Hi…well, that’s why it’s irrational. I guess it was more of a fear of the unknown. Prior to going through the diagnosis process with Z, I knew very little about autism, assuming autie kids were like “Rain Man” – a common mis-perception. What was most irrational about it was why I was afraid of it in the first place. I had no reason to believe that my kids would have it. It was just an unfounded fascination and fear of it. Just like my unfounded fascination and fear of tornadoes. Ironically, now that I’ve learned more I’ve come to realize that many family members have autistic/aspie traits. So, if I had been better educated I probably wouldn’t have been as surprised as I was the first time I heard the word autism in relation to my son. Just goes to show you how much ignorance will hinder you….

      I know better now. It’s definitely not the end of the world. It’s just turned the world as I know it upside down. I left my job, we’re selling our house, changing the kids routines, etc etc. Not necessarily bad…frankly things are much better in our house now that we’re moving forward. There was a TON of stress before the diagnosis….no one was happy. We’re in a much better place now.

      Thanks for reading my post, I appreciate it. If you have any advice, I’m all ears!!!

      • Jemima Aslana said

        Ah, I see.

        Yes, the media haven’t exactly produced very good nor loyal depictions of us. I’m autistic myself, in case you’re wondering.

        The best advice I can give you is this: listen primarily to your son and secondarily to the health care professionals. The professionals are working within a framework that defines autism as it is seen by non-autistics. That means that what they see is only the outside expression of it. They do not know what goes on inside the mind of an autistic person, and what goes on on the inside only your son can tell you.

        The reason you must listen to your son primarily is that while other autistics have tried to explain what goes on in our heads, we do not relate to the world nor experience it the same way non-autistics do. That means that we would not describe it the same way either. Example: if an autistic person says something hurts, a non-autistic will relate to the description of hurt by imagining something that hurts, but in reality the autistic person may not actually be in physical pain, but is experiencing a sensory stimulus that makes them unable to process anything else, but they have no other words to describe it with.

        I don’t know if that makes sense to you. I hope it does.

        A friend of mine has an autistic kid who kept complaining that the light from the window blinded him. She was perplexed because there was no direct light to blind him at all. The light-coloured curtains were drawn and only indirect light shone through them. I pointed out to her that one of the issues I have when talking to people is that if the light of the room is coloured – even just slightly yellow-ish like many regular light bulbs – I keep getting distracted, wondering what the room really looks like – or at least would look like in neutral white light. And the curtains? They were blue, giving everything a slight blue tinge, but the only word the kid had to describe his problem was “I’m blinded by the light.”

        I don’t know if this was what was actually the issue. What I’m trying to tell you is that if your son complains about something bothering him, don’t let anybody tell you that it couldn’t or shouldn’t be bothering him. What he says may not quite make sense to you, so you need to open up all your ‘radio channels’ and listen for what it might be that is bothering him that he may not have the words to explain.

        Oh yeah, and if he says something that makes explicit sense? Respect it. Even if it makes you sad. My friend’s kid had serious issues processing sensory input. He overloaded very quickly. So do I, but his limits were even lower than mine. And whenever he met people – everybody, strangers, family, friends – he always stated “I don’t want hugs” because he had learned that if he didn’t say so, he might get them, and he couldn’t handle them. And don’t let any professional tell you that he just needs to get used to it(whatever [it] may be in your son’s case). It is (most likely) not a matter of a mild phobia that can be cured by exposure therapy. It is a matter of overloading an already overworked brain that tries to keep up with the speed of a world it isn’t geared to process. MY friend has hugged her son maybe 10 times over the past 4 years (since he developed the skill to say no). But it means so much to her, because she knows that all those times, he really wanted a hug. It was not an unwanted hug she forced on him like some professionals have (yes, really!); it was well and truly felt.

        Since your son got the aspie diagnosis he probably has much more of a vocabulary than my friend’s kid – or at least will have it at an earlier age, but do not let this fool you. I’m specifically an aspie myself, though I claim both the aspie and the autistic labels. I had a vocabulary to rival kids 5 years my seniors at age 7. This meant people – and especially adults – mistook me for being very mature. I wasn’t, though, I just had a terrific memory, and if your son, like me, and like many other aspies, is of average or higher intelligence, then he is likely to develop imitation skills to try and hide it whenever there are things he really doesn’t know what to do, say or feel about. It will be your most important job as his parent to explain to him that he does not (or at least should not) have to stress himself in order to appear normal. It is okay for him to be the way he is, and if for instance he needs time to think about a response, then he can have that time.

        It is also very important that you explain these things to his surroundings. I don’t know where you are and what schools are like there, but it’s not too long ago that an autistic girl aged 8, was going to go to a classmate’s birthday party. Her teacher ordered her to take off her fluffy hoodie shirt with cow print otherwise she couldn’t go. She refused to do so, and thus was left in a classroom with two adults making sure she couldn’t leave. She was upset, tried to leave, was restrained in ways that left bruises, she fought back and for that the school called the police rather than her parents. The police arrested her and brought her to the police station charged with battery. Her parents showed up at the school as two police officers escorted her out of there. Traumatic for anyone, but especially so for an 8 year old autistic child.

        Another disability activist deals with the story here: http://disabledfeminists.com/2010/07/16/bad-behaviour-continued-eight-year-old-autistic-girl-arrested-for-battery/

        This is a situation born of ignorance. I don’t know why the teacher wanted her to take off the hoodie. I can think of many possible reasons. Maybe it was dirty. Maybe she considered it too hot(in January? hardly). Maybe she thought she should wear something else because it was someone’s birthday. It doesn’t really matter. What matters is that autistics often have routines that are very important. Not because wearing a cow hoodie might be specifically important, but because having done it before, and knowing what it’s like makes it safe and non-stressful for the girl, and thus she has mental processing power left to actually be in class and celebrating a birthday.

        The girl knew her needs, and thus she refused to take off the hoodie. Just like my friend’s kid knows he cannot cope with being hugged.

        Gods… I’m writing a novel here. I’m sorry about that. It’s an issue close to my heart. I grew up undiagnosed. I didn’t get my diagnosis till I was 25. Last September to be exact. I so hope that by sharing my experiences other kids won’t have to go through what I did.

        The world will expect your son to be normal. The world will expect you to try and make him normal. The world will accuse your son and you of not trying hard enough. Especially that last one will hurt, because you and especially your son will be working so much harder than any normal person just to get by in this world. And none of them will ever see it. Will ever appreciate it. The world will accuse your son and you of using his diagnosis as an excuse for ‘bad’ behaviour. The world will generally be a clusterfuck of asshattery – excuse my French. Do not shield him entirely from this, but prepare him for it. Let him know that the world will expect things of him that he can never deliver, and should he try he’ll wear himself out. Trust me, I tried for 25 years to become normal. What I got for that was stress (weight swings, insomnia, increased heart rate, tremors) and chronic depression. Give him a solid base where he can go and be weird and different and not feel judged about it – I only got that from one of my parents and it was devastating.

        Phew… for me it’s 1 AM now. I should get to bed. I suspect I’ve just about used up your ears for the moment, too. 😛

        One last point, though, before I head offline: Always remember and force the professionals to remember as well that your son is primarily a person with a personality. Yes, he is autistic. Yes, that is a pervasive developmental disorder. Yes, it will affect him in everything he does. BUT your son also has a personality. A personality which is separate from his autism. It will be shaped by it, but it will not be defined by it. It cannot be stated that “all autistics do so and so”, ’cause autistics are just as individually different as non-autistics are. We have a disability that makes certain things hard for many of us – sensory input among them – but the degree to which this happens varies between persons and between situations. What is important is to read up on autism, so you have some background knowledge, and then you should throw all of that away and focus solely on your son for that knowledge. No book can tell you what your son finds and will find hard. No book can tell you what sort of clothing (a fluffy hoodie maybe) your son will need to wear in order to be comfortable and therefore less fidgety (if that’s an issue at all).

        Your son will feel it when things are not going well. And like all other children he will try to communicate that something’s up. You’ll find yourself with the task of learning his ‘language’, his way of communicating, because he may not quite be able to learn yours.

        Oh yeah, and some professionals might tell you that autistics have no empathy and that they are egocentric. This is not true. Maybe for some it is, but contrary to popular opinion it is not a given part of being autistic. If your son seems to not feel for others, it may be that he actually does, but is unable to communicate it. And where others might give a hug for comfort if someone is sad, that may be more than what your son can manage. If that’s the case this does not make him cold. It merely means that he has to choose between not comforting someone with a hug and jeopardizing his mental health by overstepping his sensory input processing limits. A type of choice no one should ever have to make, but which he will have to make often and in many different kinds of situations. Help him express this, so he may avoid being stigmatized, and so he can safely connect with other people like he will surely want to.

        Damn, that was long. If you’ve any questions, do let me know. I’ll try to explain. I’m in Europe and I probably won’t be online tomorrow. But your reply will end up in my mailbox, and I’ll get back to you with any clarifications you might need.

        One of my autistic traits is the complete inability to be concise, as you see. But I also have a good head for details and in some cases that’s a real boon. I hope these ones can be of use for you. And I hope you and your family will succeed in bringing up a boy with the confidence to be his own weird self, the knowledge that the world will be populated with prejudiced jerks, and the tools to deal with this.

      • mbamommy said

        Wow. Unreal info and advice, thank you. I need a little time to process all of this but will definitely be reaching out with questions. Some of the things you said seem similar to traits my son has (although he’s only 3.5 yrs old so a lot could change) but maybe you’ll be able to provide some insight into what’s going on in his head and ways I can help. I’m still in the fact finding stage so not ready to throw out the books just yet. BUT, I really appreciate your offer of being a sounding board. Thank you.

  3. mcdutchie said

    You sound like you’ll be fine. Your son is diagnosed as a child so he won’t have to go through a lifetime of failures before realizing what’s “wrong” with him, like many adult HFA/AS folks of today.

    You indicated you would like any advice. I am both an autistic person and a parent of a child on the spectrum. My main advice to you is not to let the scaremongers get at you. I mean organizations like Autism Speaks and their ilk, who put millions of dollars into scaring people into believing that “autism destroys families” and other such nonsense. The antivaccinationists are another example.

    During my 15 years in the online autism community, I’ve seen too many rabid “curebie” parents online and in the media who are so wrapped up in the total, all-consuming horror of it all, that they wouldn’t recognize a happy moment if it bit them in the ass. They don’t even recognize their children as full human beings. They are so invested in the perceived misery of their child’s autism that it ends up defining *them*.

    Don’t get me wrong, there will be some misery. Life with autism is hard, and sometimes damn hard. Take it day by day if you have to. But try not to wallow in it. That’s all.

    Oh, and don’t forget your son is still exactly as beautiful, intelligent, willful, funny, independent, and a pain in the ass, as he was before you knew he is autistic. 😉

    – Martijn (HFA/AS; Netherlands)

    • mbamommy said

      Martijn, thank you for such a candid response. I will never forget that my son is still the same even if there’s a label slapped on him. He may be a pain in the ass, but he’s my pain in the ass and I couldn’t love him any differently than I do now. Frankly, we agreed to go through the evaluation process mainly to get our head’s around what’s going on with him and start getting the tools necessary to help him.

      Interesting that, as someone who is autistic and has an autistic child you disagree with the “antivaccinationists”. I’d love to hear more about that (although I know by saying that I’m probably opening up a big ‘ol can of worms).

      • Jemima Aslana said

        Good thing he said the things I forgot 😀

        He’s right. There are a lot of groups out there who will do a lot of scaremongering, as he says. You already seem to have the kind of outlook that will make you semi-immune to their rhetoric, so that likely won’t be a problem.

        You’ll hear about the anti-vaxxers, though. Those who believe that vaccines, or at least certain additives in vaccines, cause autism. This has been debunked in several studies, whereas several studies have shown a degree of heredibility in autism. Mostly, the anti-vaxxers just manage to make parents of autistic children feel horribly guilty for having spared their child the experience of mumps, measles, rubella, chicken pox, etc only to ‘give’ them autism. A pretty horrid thing to go through on top of dealing with a stressed child.

        For your own sake, stay away from that can of worms. Some of them are really hateful and will accuse you of ruining your son’s life if you had him vaccinated. There can be many good reasons for passing on vacinations – but avoiding autism is not one of them.

      • mbamommy said

        You have no idea how close I’ve been to going to a professional anti-vaxxer MD and spending a ton of money with them. I think we’ve figured out a better path to take…one that both J and I are more comfortable taking….at least for now. Again, the jury’s still out and I’m still definitely in fact-finding mode but the description I heard just didn’t seem to fit Z. The hereditary piece felt more right.

        Go to sleep! 🙂

      • Jemima Aslana said

        Yes, ma’am!

        ZzZzZzZzZz

        I’d generally say just go with the MMR vaccine and leave the rest. That’s what I got as a child. I also had the dubious pleasure of having chicken pox – thankfully I don’t remember it. Eliminating three of those Diseases of Great and Terrible Discomfort is actually rather important, especially for a child that is autistic. An itch to you, can be a living hell for an autistic child who experiences everything more powerfully.

        But then, I live in a country with socialised health care. The MMR vaccine is free for all children, and chicken pox is considered an annoying but mostly harmless hurdle to get over. The MMR is given because those three can actually be dangerous in degrees the other diseases usually aren’t. Something about frequency of complications and whatnot. However, you, living with a commercialised health care system will have quite different views and experiences with that, and I will not attempt to advise you on a system I know nothing about.

        And now. Sleep. Really.

        Honestly!

        I’m going!

  4. Rebecca,

    Thank you for sharing. Really, really wish you the best and I am very impressed with your bravery and candor. And than you so much to Jenima and McDutchie! What a unique journey into the world of autism. I don’t know anyone (or know that I know anyone) with autism and found this simpy amazing. It really captivated my attention and definitely pulled on my heartstrings. Thank you, also, for sharing.

    Best to you and your family,
    Tracy

    • mbamommy said

      Hey Tracy-

      Thanks for the comments and support. A far cry from our Michigan days, huh? That darn thing called life keeps rearing it’s spiny head and throwing things at me. We really are doing well (now) and adjusting to our new norm. Don’t for a minute think it’s all rough. J and I have 2 amazing kiddos that we enjoy to the fullest. Z’s just a little more rough around the edges than most.

      Hopefully we can get together again soon….Trang’s bday in SF was a blast!

    • Jemima Aslana said

      You’re welcome.

      I may not have a lot of resources to communicate with people face to face out here in real life, I do, however, gain some sort of peace and control over my thoughts by writing stuff down. And if what I write can also help others with some of their problems, or maybe just give them a little comfort that they’re not alone, then that pleases me greatly. I like people, and I hate to see anyone suffer or even just be sad. I’m no good at helping in person, but if I can help with the written word, I will be satisfied that I have made a difference. Even just a little one.

  5. Jacquie said

    I finally got around to catching up on your blog, and, man, that’s a lot of catching up. I’m so sorry that you’ve had such a crazy ride recently. I’m really glad to hear that the diagnosis and restructuring of your lives isaking a positive difference. Our ten-year-old nephew also has asperger’s, but he was not diagnosed as early as Z. After some years in different therapies and various classroom settings he is now mainstreamed. Your descriptions of Z sound so familiar, although we were never privvy to all of the details. After all these years eith a nephew on the spectrum, I’ve actually learned so much by reading the comments on your blog. You and J are amazing people, and it sounds as though you’ve risen gracefully to this new challenge. Hugs to all of you!

  6. Heather said

    Hey Becks – Just read this, ages later! Wow! My stepfather’s grandson (who is about 23 now) has Asperger’s, so we have it in our family too. Scary! But sounds like you guys are handling it great. 🙂 Also, congrats on your move back to CO – fantastic! I miss it there SO MUCH! -heather xox

  7. […] I Know How I’m Going To Die July 2010 17 comments […]

  8. […] when we went public about Z’s Asperger’s, I had about 20 gagillion people tell me about Parenthood.  And about 20 gagillion more told J […]

  9. […] back?  Great!  Did you notice that one of my old posts is on that page?  The one where I talk about Z’s diagnosis…or rather, the first in a 4 […]

  10. […] it’s been pretty life changing. All good changes, thankfully, nothing like going through Z’s diagnosis a couple years ago, but life changing […]

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