I am in the midst of preparing the presentation I plan to give at the AutCom conference Saturday, October 6th. There will be lots of visuals and (hopefully) some humor. I intend to talk about our journey from diagnosis to terror, despair, anger, determination, discovery, acceptance and HOPE! I will keep it personal and hope that our story might resonate for other parents, while also explaining why and how the words and voices of Autistic people have so completely changed our lives. (I use the word ‘our’, because it is not just my life that has changed, but Richard’s and by extension both our children’s too.) I hope to illustrate the ripple effect of our actions, all of our actions and how important it is (to me) to do everything I can to change the way Autism is perceived.
I have found that in talks such as the one I am about to give, one walks a fine line between trying to share one’s personal experience and ‘lecturing’ or being seen as dictating to others how they should or shouldn’t behave. I don’t know that I’ve always gotten that balance right, in fact, as I write this, I know I haven’t. But there are a couple of points I know are universally important. Things I can do and try to do – be honest and hold myself responsible for my actions. While also being hyper aware of what Emma would say were she in the audience. Am I saying anything that would wound? Am I saying anything that might make her feel badly about herself? If she were there, would she object?
On this blog I have shared all kinds of things about my past, my personal struggles, things that happened long before I ever had children because it’s important to me that people reading this blog understand, my “issues” are not caused by my husband or either of my children. My issues are what cause me to react the way I do. It is this baggage, some of which I’ve unpacked, some of which I continue to struggle with, that cause me to trip up and behave the way I do. Neither my husband nor my children CAUSE me to lose my temper, feel sad, fearful, depressed or impatient. I felt all those things long before I was fortunate enough to have a family of my own.
When I am feeling disgruntled about my life it is not because of my husband or children or anyone’s specific neurology, it is because I have expectations that have gone unmet. Until I am able to fully embrace and accept myself, my life and everyone in it fully, I will grapple with feelings of discontentment and despair. My level of annoyance and dissatisfaction are in direct proportion to my unmet expectations. This is my life’s work. This is what I need to be vigilant about.
Given all of this, it is particularly fitting that tonight Richard and I are going to a meditation workshop with our two favorite Buddhist teachers, Ezra Bayda and Elizabeth Hamilton at the Open Center. Their lecture is appropriately entitled – Freedom From Fear: A Zen Perspective.
Nic does the NYTimes crossword – April, 2002
Emma ‘reads’ the NYTimes – 2003
Emma's Hope Book 
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Oh, my gosh, Arianne…..you so hit the nail on the head with this one that it gave me chills. This describes me so perfectly it’s eerie. I partly blame Marisa’s autism for feeling disgruntled about life – but the truth is that accepting it is MY issue, not hers.
The truth is, no – this is not even close to what I pictured family life would be like. This isn’t even close to how I thought I would look, feel, or act once I reached this age. But I am trying. I’m trying, very hard, to be happy – not only for myself, but for the sake of my family as well.
You know I’m not at all a religous person, either, but I do love the Serenity Prayer –
“Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”
See how I left out the God part? It works for us heathens, too! 😉
I NEVER use the g-o-d word! I just can’t do it and yet I have tremendous ‘faith’ not in a deity, but in mankind. I believe strongly, completely, actually, that we are capable of tremendous good. Through our actions, through our behavior we can change not just ourselves, but each other. Honesty, willingness to be honest, open to other points of view, kindness, compassion… these are all things every single religion talks about. If I can keep moving through life with the humility of knowing I am a flawed human being, that I will never reach “perfection” that life is an opportunity to continue to progress, while doing the absolute best I can to follow a path of honesty, kindness and compassion I will be living a life worth living.
I know you are not just trying, Angie, you are doing. I see it. I hear it. And I’m cheering you on!
“If I can keep moving through life with the humility of knowing I am a flawed human being, that I will never reach “perfection” that life is an opportunity to continue to progress, while doing the absolute best I can to follow a path of honesty, kindness and compassion I will be living a life worth living. ”
I so, so agree with you, Arianne! Isn’t it ironic that so called “devout” people can act evil towards others every day of their lives, but then go sit in a church or confession booth and then it’s all good? Really? Be a good person. Live by the golden rule. That’s all anyone really needs to do, and yet we muck it all up with Bible Bull*hit. And that’s what it is, too. I’m not an atheist – (I actually believe in reincarnation) but as for any “organized” religion? Yeah…..SO NOT for me.
I’m totally with you, let’s keep rockin on with our bad selves! 😉
Oh, and by the way – I’m gonna start keeping track of all your amazing quotes, and maybe you can put them all in one post, or even write a book eventually. (Which I’ve been meaning to suggest for the longest time you should do!)
I’m still catching up on all your archived posts, going back to day one. Seeing how much you’ve grown and changed since you first started writing this block is an an amazing transformation to witness. It gives me hope that there might be hope for me, yet. 🙂
Oh Angie, when you wrote “I’m still catching up on all your archived posts..” I inwardly groaned. I cannot tell you how often I’ve thought of taking so many of those posts down, but the truth is, they are an example of my process. I haven’t taken any of those old posts down (though I did remove one post a while back that was so offensive I just couldn’t keep it where I site all the alarming “statistics” and how frightened I was. Even Richard, at the time, commented with, “I really hate this kind of alarmist thinking.”) So yes, that one I removed, it was too toxic and too destructive. I would never want Emma to happen upon it. The truth is though, there are probably a number of them that are destructive and would hurt Em were she to read them. One day I will go through them and remove those that are hurtful. Also this was when this blog was getting maybe ten or twenty visitors a day and the majority of those were family members or close friends! It was a big deal if anyone even left a comment. I think for about a year, my mother and husband were the only ones who left comments!
Well, it’s your blog and you can do what you want, obviously….but at least let me read them all first? I’m really enjoying them and learning so much!
On another note, we just got back from the doctor….Risa has phemonia. Yep. I’m kind’ve furious with her doctor right now, and as soon as we’re eligible to switch, I might. (This has been my kids ped since they were born. Marisa has a developmental ped, as well, who I have issues with too. But this is the one here in town, where I’ll take her for routine checkups, ear infections, etc.)
Anyhow – she’s been coughing for about two weeks. I took her in when it started, as well as to have the rash on her legs looked at and ask for a referral to the dermatologist. (She’s had terrible eczema her entire life!)
Visit 1 – her cough is just allergies, her lungs sound clear, ears & throat fine. Rash is impantago, an antibiotic is prescribed.
Visit 2 – ten days later, which was Monday. Rash is worse than ever, as is cough. Well, rash must be her eczema since the antibiotics didn’t help. Prescribed triancinolone, which DOES NOT work. Never has, never will. My kid is itching herself bloody. Get a referral to the dermatologist after much insistence. Cough is still no big deal – lungs sound clear, throat and ears look ok. Sent on our merry way.
Yesterday, Risa gets sent home from school with a fever of 100.7 – call the dr’s office, they call in 10 days worth of amoxocillan. Um, ok? For what? Two days ago everything was fine, NOW she needs antibiotics? Which brings us to today –
Visit 3 – my kid is running a fever and has been coughing for TWO WEEKS and it’s getting worse. She has an MRI scheduled for Wednesday morning and will be under sedation. I can’t just tell them she’s on antibiotics and I don’t know why, FIGURE OUT WHAT IS WRONG WITH MY KID!!
So, she looks her over, and says….GET THIS – “Well, it’s hard to get a good listen to her lungs since she won’t take deep breaths like I instruct”.
Did you read that right? Did you do a double take, too? So, what are you telling me…you’ve NEVER got a good listen of her lungs, and she’s been coughing for TWO weeks? She was going to put her on antibiotics because “the book” says that if they’re coughing over ten days, they should be on one.
Incredulous, I ask her what she plans to do – and she finally ordered a chest x-ray. Which, she didn’t exactly stand still for, but the radiologist says it looks like she has phemonia on her lower right lung. We checked her oxygen levels doing the finger thing, which they couldn’t get a complete read on, either, but her breathing seems ok.
I’m so pissed right now, Arianne. See, this is my biggest fear. That someday, something will be terribly wrong – she won’t be able to tell us anything, and the doctors will overlook things cause they’re effin idiots and really don’t want to deal with her in the first place. This is a pediatrician who knows my daughter well, she was literally in the delivery room when she was born. And yet, we’ve still gone through this the last two weeks.
Some days I really just hate doctors, teachers, therapists, every last one of them. The plaque on your wall doesn’t mean you know my kid better than I do. When I tell you something is wrong, I mean something is WRONG. Hello – SHE cannot tell you, and I know her best.
Sorry to go off on such a rant. I’m just really upset…and, needless to say, we have to reschedule her MRI because they can’t sedate her when she’s so sick.
Dang, I’m mad right now. Sorry you had to be the one to read about it!
Thank you for all the kind words Angie, so nice of you. 😀
We have a friend- no, really : ) – who is very involved with Buddhist practice. I am a beginner, but consider Buddhism at the very least a user manual for being a good human. However, even our friend cannot shake what one hears so often from parents, which is “I am only as happy as my saddest child.” I’m wondering if you have any thoughts on this?
Hi Rob, I’m terrible at word problems! So I had to reread that – “I am only as happy as my saddest child” about five times to figure out what that even means! This is an example of my specific neurological wiring, misfiring!
Okay. So here are my thoughts –
Obviously if my child or husband or quite honestly anyone I know or meet is suffering I am affected by their suffering. It is unavoidable. We absolutely affect one another. I don’t think anyone on this earth would argue that. But I don’t think attributing a state of being to another person’s mood, like sadness, is actually entirely honest. Being affected by another isn’t the same as saying the way I behave and how I perceive the world are caused by another person. We cannot change another person’s feelings, the only feelings we have any hope of changing are our own.
Did I answer your question?
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Hey Angie, no need to apologize, it’s appalling. And yes, infuriating. It makes me furious. Seriously and your indignation is correct and the reasons why you’re angry are correct. So, nothing wrong there. Rant away.
(((Angie))) and (((((Marisa)))) sweet, sweet girl…. (s) even though you’re a grown woman, you know what I mean 😉
You know, I wasn’t going to say anything, but after the third mention that your husband wasn’t the cause of your suffering, I started thinking: Hmmmm…perhaps she doth protest too much! We all point the finger at times, mine is usually pointed out more often than in, but then I had eighteen years of intensive prick training from dear ole dad. I try to look at the four fingers pointed back at me, but far too often I take more notice of the middle one. Sigh…thank d-o-g I have such an amazing wife who keeps reminding me to look at myself, not so often by telling me to, but by showing her willingness to turn the mirror inward. Lucky guy? You betcha.
Awww… Go on… Making little heart shape with hands, corny? Oh yeah!
Ohhh your both so adorable !!
Bron…. making little heart shape with hands and blowing kisses, because you live so far away… 💜 😘
Angie
It is not Marisa’s fault that the doctors and health care providers want her to do things she can’t or won’t do to make their work “easier”. They went to school and that’s the best they can do? She feels ill and the excuse that she cannot follow instructions is a lazy one.
I can’t take deep breaths either and sometimes I cannot say where I hurt. A friend who is speaking, goes to college and works cannot say where she hurts either, not every time.
It is frustrating and you are right to be mad. Autism has nothing to do with their incompetence. Doctors deal wit patients that cannot do certain things either, but they show more patience (sometimes) because it is not autism or another disability. I hope Marisa feels better soon and that you can meet better doctors in the future.
Hi – Will you please post a link to your important Blog at The Autism Community at vorts.com? Our members will really appreciate it.
Members include: Those living with Autism, parents of children with autism, their families, friends, support groups, etc.
It’s easy to do, just cut and paste the link and it automatically links back to your website. You can also add Articles, News, Photos, and Videos if you like.
Email me if you need any help or would like me to do it for you. I hope you consider sharing with us.
Please feel free to share as often and as much as you like.
The Autism Community: http://www.vorts.com/autism/
Thanks,
James Kaufman, Editor
Hi James, I only just now saw this… did I ever get back to you? I have no idea how to add a link to the site you’ve posted a link to. But if you’d like to do it, please do!
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