Continuing The Conversation…

Be honest.

I’ve written about this before.  Writing, writing that really reaches out and pulls others in is about honesty.  Even if you write fiction, it’s still about honesty, the feelings portrayed, the dialogue;  it has to be honest for those of us reading or we can sense it.  We know something’s a little off.  Sometimes it’s hard to pin down, it doesn’t seem obvious right away, but I’ve found it’s because I don’t believe what I’m reading.  It’s not entirely honest.  I have had this experience with my writing.  I have written things and then wondered why it didn’t feel quite right and it’s because I either hadn’t dug deep enough or I wasn’t being honest, which in many ways is the same thing.  Self dishonesty is one of the most difficult things to spot.  I spent years and years in a place of deception, of hiding from myself, my feelings, my desires, my ambitions.  I shut down.  I hid and it caused great pain, not just to me, but to those who loved me.  It’s hard work to be honest.

A couple of days ago I wrote about labels and my struggle to understand how and why they do not apply to our Autistic children.  Why they cause damage, why they are destructive and not constructive.  As is often the case, I use this blog to figure things out.  I think of it as my sketch pad where I play with ideas and then either move on to the next sketch or work and refine.  The pieces I work on a bit more, I often submit to HuffPo, I think of it as filling in with color and others I keep working on with the hope of putting them into a book, a finished canvas (this last part is very hard for me, sketching is easy.)  But as I’ve also said, I’m a SLOW learner so sometimes ideas will fall easily onto the page, or in this case the screen, but not move beyond it.  And that’s where the work comes in.  Because ideas are great, but if I can’t take them to the next level they won’t go anywhere.  Some things seem to take me awhile to really get, to fully  incorporate in a way that they become less an idea and more a knowing.

So it was this morning as Em and I made her breakfast.  I was thinking about labels and why they matter or don’t matter and why they bother me and cause me to ruminate and at a certain point I tired of the ongoing controversy raging  in my head, so I forced myself to shift my thinking away and be present for my daughter.  I was able to and eventually off she went with Joe onto the camp bus and I turned to my email and there was Outrunning’s latest post.  Now for those of you unfamiliar with Outrunning The Storm, click on the name, I’ve provided the link.  Did you read it?  The post – How Do We Talk About This?  I’ll wait.

I’m waiting…

Okay.  So there it is.  For those of you who didn’t click on the link, skip to the next paragraph, but for those who did, and if you’re like me, you also clicked on the comments and saw the first three from Moms who got what Outrunning was saying, who’ve been on the receiving end of exactly what she’s referring to and get it.  They get it, or so it seemed to me when I read their comments.  And then there’s my comment.  Yeah.  Okay.  So I still have some work to do.  I’m pleased to say that I did go off after leaving my comment and sobbed.

I’ve been very weepy lately.  Partly I blame my husband’s absence, he and Nic remain in Colorado while Em and I are here in New York, so I’m a little off-balance.  There’s a lot going on this summer and at times it all feels overwhelming, in a good way, but never-the-less overwhelming.  But I think most of my emotional overload is due to the fact that Peyton and Dianne Goddard’s book – I am intelligent – has stayed with me, in addition I received an email from Emma (not my daughter, another Emma, who two years ago began to communicate through typing and has a blog) that both delighted me and filled me with emotion.  I asked her permission to quote her and she has given it, but I want to be sure I also respect her and so will quote just two sentences.

“me name is emma and i am like peyton.”

And this:

“i am pleased if our emails teach people how to measure words or personal stories in front of people they think cant communicate..

Emma”

Take a deep breath.  Okay.  Be honest.

I spent years doing this to my daughter, exactly what Emma is pleading that we not do.  It has only been within the last year that I have stopped doing this.  I have to make a concerted effort to refrain from the temptation.  So I read Emma’s words again.  I have memorized them.  “I am pleased if our emails teach people how to measure words or personal stories in front of people they think can’t communicate.”  Read that again.  There is no condemnation, no criticism, just a heartfelt request.

We are in this, all of us, together.  Your version may be different from mine, you may have children, you may not, you may have someone you love who is Autistic or you may not.  You may be Autistic, you may not.  But we are all, each one of us in this together.  There are Autistics calling out, trying to be heard, blogging, talking, communicating, asking for respect, asking for a chance to join the conversation.  There is no conversation if a whole group is silent.  Whatever group that may be.  We are ALL served by listening, by sharing our experiences, by trying to understand.  As human beings it is our obligation to be honest, to try to dig deeper, to listen.

Alone we can do so little, together we can do so much.”  Helen Keller

Richard, Me & Em – 2003

Nic and Emma – 2011

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25 responses to “Continuing The Conversation…

  1. Labels are dishonest, and that’s why we sense/know there’s something wrong with them. They are simply a convenience for those who want everything to fit into categories, which have been made up for the occasion, and then expect everyone to accept, without questioning. It’s so much easier to just accept what someone else says, especially if it means one doesn’t have to think about something that’s sure to prove uncomfortable. To be a skeptic, like being honest, is hard work. Both require thinking, examining, pondering, and then acting.

    You do all of these, and I am so proud of you, so lucky to be your mother, so lucky to be the grandmother of Emma, and of Nic. As the psalmist says: “my cup runneth over”.

    I did read outrunning the storm, so brave, so honest, so thoughtful, and now I have ordered Peyton’s book.

    Thoughtfulness, perseverance, and love can conquer labels, dishonesty and despair.

    • Wow! I read that first sentence and I thought – wait a second, is that true? and then I thought about it and I read the rest of your comment and I saw it. You’re so right. I hadn’t been able to figure it out. I’ve been going over and over it in my mind and that’s it. These labels ARE dishonest, but I’ve never thought of them that way. I love that! AND I love you. Whew! I am so very lucky, not sure how I came to be so lucky! Thank you Mom for “having borne me” and thank you for commenting with such insight, as always!

  2. You are my hero. Always have been. Always will be. Your courage, your determination, your sacrifice, your love — most of all your honesty. You always push yourself harder and harder to be more and more honest. That shines a light for everyone — that it’s okay to take risks, get vulnerable, let the chips fall where they may — and let it all out. You may get criticized by the ignorant, but those with open hearts and open minds will always embrace you, respect you, learn from you. I love you. Miss you mightily.

  3. Thank you very much, Ariane, for the link to Outrunning the Storm and for the book recommendation. I love when your posts send me off in search of other sources. And, like I told Outrunning, I agree. The labels don’t help. My child is different from yours, and so alike in many ways. It is unhelpful not to get services, to compare situations, to say he’s autistic, but, boy, is he bright.

    Let’s keep talking.

    • You know what struck me when I read Outrunning’s post? The part where she describes thinking about getting a separate apartment so that everyone would be okay. That hit home and it all made sense. Sometimes, things I have heard over and over again don’t click and then someone says something slightly differently and it’s as though the scrim separating us is removed. We all have to keep talking. You never know who might say something in just such a way that it finally makes sense.

  4. ” …If everyone would light just one little candle .. what a bright world this would be. …”
    Soldier on.

  5. It takes a whole lot of strength and courage to be honest with yourself and then to turn around and own that truth for the world to see is true bravery. This is how we heal ourselves and each other. This is how we learn and move forward. So, you give yourself far too little credit. Thank you for your words and your honesty and your courage to share it all with us!

    • I want you to know that I understand how painful it must be for you to deal with the moms (like me) who turned away. Who couldn’t meet your eyes, who changed the topic or just said nothing but in that nothingness you were able to feel their envy, their jealousy, while also knowing that they didn’t understand. I want you to know that I’m sorry. Thank you for explaining it one more time, thank you for saying it again, because this time, for whatever reason, I really did hear you. I know I’m just one person, and there are so many more out there, but from one person to another, thank you for not turning away.

  6. Ariane, I have only been reading this blog for a short while – (last nite I went and tried catching up on the last few months, and am still as impressed as ever!)

    From what I can tell, you are nothing if not brutally honest. It just seems to seep from the very core of you. As if, if you don’t put it all out there, what’s the point, right? I believe you started this blog with the best of intentions, and I think it’s working wonderfully. I’m really enjoying my time here getting to know other parents and their kiddos.

    On a seperate note, a quick question. I am noticing in the pics of Emma that you post that she’s developing quite a figure already. Can I ask how old she was? Marisa started developing very early, I’d say like late seven, early eight. At nine, she has got zits, grown up hair, and the beginning of boobs. 😦

    How do you plan on handling the onset of menstration with her? Or has she perhaps already begun? Sorry if this seems like such an invasive question. You know how hard it is to find other moms of GIRLS with autism to ask these things too! Marisa’s pediatrician thinks it best if we give her a shot to stop menses, and I completely agree. She is barely potty trained as it is, and would have zero comprehesion of what was happening to her. The only problem is she has to *get* a period before we can do that!

    Hitting puberty and being non-verbal is making me cringe. I guess I just don’t see things getting much, if any, easier. My only hope is that she can remain living with us as long as possible. Those episodes of violence a few weeks ago were truly terrifying!

    • When I began this blog it was for my family and friends, it never dawned on me that it would ever reach the numbers of people that it now does. Having said that I never want to write anything that, were my daughter to read, would cause her despair or to feel badly about herself. I also try to respect her privacy. I cannot know what topics she would feel comfortable having put in the public domain, but I have to, out of respect for her at least acknowledge and try my best to honor her.

      So there are a number of topics I made the decision early on that I won’t address on this blog. Her puberty is one of those topics. Some people reading this may think I’m being hypocritical as I’ve blogged at length about her early bouts of constipation, and all I can say is that this blog has evolved as have I (thankfully). Things I did and said two years ago are not things I would say or do today. What I can say is that I am honest with her (seems to be a tic of mine) and I talk to her about everything that I talk to my son about.

      I have asked her when I’m posting photos of her if it’s okay with her to do so. I have shown her Emma’s Hope Book Facebook page and asked her if she’s okay with that. She has said she is. But I also know this is a slippery slope and one I must be careful to navigate with caution. If at any time she indicates any hesitation I will stop. Because Emma is more important than my feelings, this blog, any photo I may be tempted to post or anything I might feel the desire to say, Emma has that right. She has to have that right, just as my son does. When I am worried about whether I am entering tricky terrain I ask myself would I write this about my son and would he be okay with this? If I know in my heart the answer is no, then I don’t do it. Nic and I have talked about this blog, just as I’ve shown it to Em. I have even read posts that she’s indicated she wanted me to read to her.

      It worries me that any pediatrician would recommend staving off your daughter’s menstrual cycle. As you know I have done a great many things to my daughter that I deeply regret. I would love to think my mistakes serve as a cautionary warning to other parents. The single most important thing I’ve done for my daughter is read blogs written by autistics and then reached out to some of them. Because our girls are going to grow up to be young women, that is inevitable. The Autistic young women who are out there blogging nonverbal or not are women I would be honored to call my daughter. They are paving the way for our daughters to follow. My job as Emma’s mother is to educate myself so that I can do everything I can to support her, cheer her on, but most importantly have faith that she can and does understand. Sorry this got far lengthier than I meant it to.

      • I’m sorry if I offended you by asking! And of course I absolutely respect your decision on what topics to write and talk about.

        You have to understand, with regard to the monthly menses – Marisa isn’t even completely potty trained. She is about 95% there, but had an accident just again today. She would honestly have no idea or concept of what was going on, and she is terrified at the sight of blood. It isn’t really an option not too, in our case.

        I hope you don’t think I’m disrespecting my daughter’s privacy by discussing these things about her. These are just real life, pressing issues that we’re dealing with now, and I was/am honestly seeking advice. I hope you know that I’m always happy to hear YOUR opinion, even if it doesn’t have an “Emma story” along with it! 🙂

        • Hi Angie, I probably should have waited to respond, because I was responding with my guilt instead of in a rational and more logical way, which would have been more helpful, I think. Thank you for the reminder that I can speak my truth without an Emma story! I forget that sometimes so it’s good to be reminded.
          Your questions, which were honest questions by the way and ones that I have asked other parents I’ve met in private, addressed things I know and have worried about all too well. But my fears and worries, which I often project onto my daughter have nothing to do with her. So without bringing my daughter into it, here’s my honest opinion – I would not give my daughter a shot, because no one knows what long term use (over the course of a lifetime) is. She is still very young. I hear you about not being toilet trained and not understanding. I actually spoke to a mom about six months ago about this very subject as her daughter is now 16 and is nonverbal. She said that she used visuals, books and spoke to her daughter. She had no idea whether her daughter understood, but she figured it couldn’t hurt. Interestingly when her daughter did begin to menstruate she took it in stride. There were a few accidents along the way, but she also wasn’t completely out of diapers, so it made perfect sense that there would be.
          I have come a long way from where I once was, in that I used to think of Emma as unable to understand because she did not indicate that she did in a way I could see and understand. What I’ve learned through some of the websites I sent you, is that I was incorrect. I now assume competence. I have to because the other is so damaging.
          The other piece of this that you have to know, Angie, is I have tremendous guilt. This is something I must and am working through. I’ve written about it at length, but the stem cell treatments, the month we put her on oxytocin, these are things I wish I could take back. I cannot tell you how much I wish I could take them back. But I can’t. So when i hear other parents who are exhausted, fearful, doing all they can to help their child and are contemplating treatments that may or may not do longer term damage my heart aches. I understand Angie. I really, really do. But I also know, if you do this and down the road there are ill unforeseen side effects that no one can predict, you may not be able to forgive yourself. I hate that we did what we did, but I have to face it head on and take full responsibility because I’ll be damned if in addition to exposing her to extremely risky and invasive treatments I’ll try to gloss over those choices that I made on her behalf. I hope this helps. One last thing, when you comment on this blog or any others you are anonymous while I am not. So you have a freedom to say things that I don’t feel I have. I hope that makes sense. Also you can email me anytime – emmashopeblog@gmail.com
          Glad you came back to discuss.

          • Ariane, thanks for being so honest. You’ve given me alot to think about. I have awhile to decide, hopefully. I guess it’s like any other medication or treatment – you have to figure out if the risks outweigh the benefits. For example, I *HATE* all the medication she’s on. Seriously hate it, it breaks my heart. And yet, when we’ve tried in the past taking her off it, she has become very violent and self injurous. So, if we want to keep her home living with us (forever is my goal!) and she has to be on meds, so be it.

            In this case, I honestly do just think it might be for the best. She doesn’t do well at the sight of blood, and falls to pieces. I just really think it would be traumatic to put her through. I also think it would cause a real loss of the restroom skills she’s finally gained. We have a terrible time with constipation with her, I really hate to add monthly cramps she won’t understand into the mix. 😦

            This isn’t something I *WANT* to do. Far from it. Given the circumstances, I feel it’s for the best. I guess we could always just try for a few months and see how it goes, before deciding. I don’t know. It’s alot to think about.

            I also understand the guilt thing, very, very much so. It eats me alive every day. I wasn’t exactly a role model pregnant woman. I’ve often wondered about the things I’ve done and the effects they could have caused. They put me on Wellbutrin, for my severe depression. I didn’t completely quit smoking, I drank pop. I got a severe sinus infection that I was put on antibiotics for. When she was born, I didn’t breastfeed, or even try. Her therapies have been limited by what school can offer and what her Medicaid and SSI will cover. I have not spent nearly the time working with her one on one that I could have been/should be. The list goes on and on. No wonder I have such anxiety issues.

            I’m really trying to grasp the concept that perhaps she *DOES* understand more than we give her credit for. I wonder how much damage that has caused her. It’s a wonder she doesn’t truly hate me…or, maybe she does. I wouldn’t blame her.

            So yes, I understand all too well where you’re coming from. For what it’s worth, I would do anything to try and help my daughter. Given the opportunity, I would have tried stem cell treatments, too. You can’t beat yourself up about it. There isn’t anything, any one of us would not do if we honestly thought it would help. ((((Hugs))))

    • Having a monthly to complain about and blame things on is one of the main ways we can all relate as women until it goes away by itself or a needed hysterectomy etc. And then we can still relate to the memory. Seems wrong to take that away artificially unless it’s a life threatening situation. Nobody likes it as Gareeth touched on, cramps, feeling icky, all of that, but for me it was at least one thing to have in common with the “real” girls (yes sadly that is how I saw it when I was younger). Angie, let the Aunties and cousins and neighbors and friends at school and in life that you haven’t met yet help you out on explaining it to her–they might bond over it, and there’s a lot of people in life who want to help but they don’t know how or don’t want to seem intrusive… think of the way it feels to help someone… and give someone the opportunity to feel that good. It is nothing to be embarrassed about to be giving someone that gift of feeling good by helping a friend. You are not alone. Just please don’t let some wonky doctor con you into doing weird unnatural acts that can’t be reversed and things like that. You don’t need the regrets on top of everything else. I wish you well and I hope you do get a chance to read the books and links Ariane sends. Sending blessings, Ib Grace, another grown Autistic Woman

      • Ibby – this is just her regular, developmental pediatrician. It’s a birth control shot, simple as that. It’s nothing weird, or unnatural, or irreversible. I look at it as doing it for health reasons. As far as “explaining” it to her….there just isn’t any way to do so. If there were, I would. You have to understand, at nine, she isn’t even completely potty trained. She has major issues with constipation, etc. This would just be traumatic for her, in my opinion.

  7. Labels are destructive. The whole artificial divide between high and low functioning is one of the most artificial things about autism. I say that because whether they call you high or low or moderate isn’t actually based on the degree to which your autism impacts you but on your speech and where you scored on the day they measured your IQ. Both those things are coded for in separate places anyway.

    It also divides the community. Instead of understanding by definition there is a shared set of differences (and yes I am going to outrage some very vocal people by saying those differences are disabling often)

    I’m technically high functioning because I did eventually speak. My IQ is at least three standard deviations above the norm which isn’t actually any help at all in terms of day to day life. It does mean what I have to say about autism and how it impacts me can sometimes be dismissed with a “must be nice”.

    But it isn’t nice. It’s often hades. I don’t fit any system here. A major life change in January threw me into a treatment resistant depression that I still am fighting. They discharged me from hospital because the thing that makes my depression treatment resistant isn’t really their mandate. They discharged me from a program that was providing some daily and then every other daily support for much the same reason. They called it a transition to something else but that something else never materialized,

    I don’t have family support. In the days when I was young if your child was autistic it was something to be deeply ashamed of and to deny and when they could talk denial became part of the treatment supposedly ensuring a better outcome.

    That a better outcome would be more likely to be attained with supports appropriate to where my deficits are not what my IQ is and some honestly about how deeply my autism impacts my life (If one more professional says something cute like “with the emphasis on the high functioning” before they have any clue at all about how I function beyond my speech and IQ I might have to scream)

    But I am called high functioning despite the fact I often don’t function at all. Appropriate supports are an impossibility due to my IQ no matter how badly deficits due to my autism impact my activities of daily living. (No occupatational therapist could ever claim I wasn’t severely impacted there)

    With no support at all now things that should be so basic for someone “high functioning” don’t happen at all. My dog gets fed because he insists. I often don’t, I’m beyond tired of systems that think labeling is somehow treatment.

    There are so many shoulds that go with this territory too. If life is downright nitrogenous waste like (trying to be polite) and I say it here is that going to depress parents. If I don’t say something about an issue I feel strongly about though that silence in itself seems dishonest to me.

    As for puberty despite all the education my mother and the school did when it happened I still didn’t understand it. I thought I was dying. The hormonal changes at that time of month even after all these years of experience with it somehow still surprise me every time. I wish I had taken up my doctor on the offer some years ago to end mine. It’s not my favourite topic. I can’t imagine how it would have been if I couldn’t even have understood the whole why is this happening to me (although like I said it wasn’t actually any help that I did).

    And Gramma Paula Emma and Nic are lucky to have you. I liked “Thoughtfulness, perseverance, and love can conquer labels, dishonesty and despair.”

  8. I loved that too!
    Do you mind my asking, when did you begin speaking? I ask because you wrote “.. I did eventually speak.” So I was curious.
    I am really sorry to hear about your on-going depression. Is anything helping at all?

  9. I read both your posts and the one by ‘Outrunningthestorm’. I’ve also written something about lables myself. I really don’t find them helpful and believe they are there for the benefit of the medical profession, insurance companies and service providers etc. I think they can really limit what people expect and take away from the need for us all to recognise and encourage individual strength and development.
    I also think it is great that you write about your issues with understanding these concepts. I think many parents and others will never give any of this a thought because labels are there and very few people ever suggest that we should question them. So thank you for writing and keep asking the questions and discussing. That’s the only way any of us will learn and grow.

  10. I am having trouble keeping up with my thoughts and feelings triggered by this post and the replies (and reading Outrunning the Storm, and Emma’s Miracle Music).

    On labels, from the other side of the fence: I feel guilty. In the ‘helping’ fields it’s almost impossible to not use them, even to look for them, always trying to find a frame to understand through, to view with. Even when you don’t believe in them, sometimes you have to use them to make yourself understood. I’ve seen them help as much as hurt.

    I don’t want to defend people who use them carelessly, who misunderstand the weight of such words. And yes, the danger is all the expectations that people bring with those labels and attach to them. All those ideas about ‘normal’ and what isn’t. And the funding – in Australia the states that have funding in schools for autism have higher rates of diagnosis than those that don’t. Parents are being told ‘get a diagnosis of autism and we can give you services’. Yes, it’s all about the labels, and it’s dangerous in all sorts of ways.

    But then I remember the thing I’ve learned about skill.., what seems to distinguish all the best counsellors, doctors, therapists, whatever… the thing that makes the great ones better than the rest is that for all their knowledge and experience and training, they treat each ‘client’ as an individual, as a person before anything else.

    They don’t shy away from not knowing, from finding something in this new person’s life that bucks the trends, confounds the known, can’t be compared. They are the ones that stay connected, feeling the impact of doing this messy, hard work, this engaging with the raw stuff of people and their lives. To not become crusted over, to do things by rote and routine. I can only hope that I am one of those, and that families in need find workers like that – the ones that meet you as a person, as an individual, as unique.

    Ariane, your honesty is astounding, and admirable, and incredibly useful (that isn’t the right word – it sounds too selfish – but it will have to do). And the same to Ibby and Gareeth and all the others in this community I’ve stumbled into.

    I think what I really want to say is thank you. I’m learning so much reading this blog, and all the others. Learning so hard it hurts a bit. But that’s a good thing. That’s the kind of learning that sticks. And yours are the kind of words that change the world.

  11. The danger is in the expectations people bring with those labels and attach to them… Love that!
    I also loved what you said about what distinguishes the best counselors, doctors and therapists from the rest.
    And finally I just want you to know how much your kind words of support and encouragement mean to me. Thank you for that, really thank you.

  12. Pingback: Letters, Photos, Autism And Jerusalem | Emma's Hope Book

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