an imperfect journey

*

Last night, my post, No Sides From Which to Choose was posted on The Thinking Person’s Guide to Autism’s Facebook page. On that site, a number of autistic advocates took issue with the post, focusing particular attention on the following paragraph:

On the flip side, I’d argue that it’s also why we don’t often hear advocates of the neuro-diversity movement talking about the dark side of self-injury or the violence that can and does so often stem from the constant frustration of not being able to effectively communicate one’s most basic thoughts with those around him. Because it doesn’t fit the narrative of pride and dignity and the right to self-determination that is so vital to share in order to counteract the destructive messages about autism that come at autistics from every other angle. Frankly, it’s the same reason you don’t often hear about those things from me.

The paragraph was poorly written to start, in that it should, at the very, very least, have read, ” …I’d argue that it’s one of the many reasons why …” but that would not have come close to solving the problem, which was not in the delivery, but the message itself.

The first issue raised was that of privacy. That was raised by a commenter here on Diary during the day yesterday as well, who wrote, in part, “Great post. I would like to venture, though, that maybe a significant part of the reason self-advocates are reluctant to talk about self-injurious behaviours is because they’re a very personal subject.”

My response to the commenter was long, but it began with “I agree,” and led to,”as far as parents — those of us who see autism as an integral part of our kiddos are far less likely to belabor the more painful or personal parts of the disorder because we assume that, as you say, these topics feel invasive for our kids and because of that, discussing them feels like a betrayal of privacy.”

Another commenter shared that part of why it can be difficult for autistics to share their experience is that there really is no language that is up to the task. Given the post’s subject matter (the need for a new langauge around autism that acknowledges both pride and challenge simultaneously), I couldn’t help but feel that reason to be particularly profound.

Many others pointed out that many, many autistic activists do in fact talk about these things in great volume and detail and that one doesn’t have to look far to find them. This is another good point and is very well taken.

On the same comment on yesterday’s post that I cited above, I wrote, “To be clear, I’m speaking only of my take on the extremes ..”,” hoping to drive home the fact that I was not attempting to paint with a wide brush, but looking at the outer poles, as they were the focus of analysis in the post. Nonetheless, it appears that that message was obscured. I apologize for that.

Another extremely important point raised last night was that, even if one wanted to disclose some of the more personal details of his or her experience, it’s not always possible to do so without the threat of some very real consequences that can and do result from their disclosure. Given the lack of understanding in the public domain about autism itself and atypical neurologies overall, these could include one’s ability to parent his or her own children being called into question. That’s real and it’s horrifying. As so much is still misunderstood out there, it could mean the loss of a job. That’s another very real threat and a chance that no one should ever have to take.

So it’s vital to recognize that for some who do not choose to speak about these things publicly, it is fear of repercussion from doing so that informs their choice. One commenter whom I consider a friend touched on the fact, and I hope she’ll tell me if this is not an accurate representation of her words, that some may assume from the way that I presented it that shame is a factor. It’s not, and if my words implied that I thought that it was, I again sincerely apologize as that was not remotely my intention.

When I wrote the Huffington Post piece, Like Me, in which I came out as bisexual because I thought it was important that I use my privilege as an assumed straight woman and the platform that I have as such to help remove the stigma from non-heterosexual orientation. (That’s a really messy explanation of the post, but I’m running out of time and it’s the least important thing I’ll write this morning). I passed it first through a dear friend who is gay. His second reaction was that I left out how dangerous it can still be for some people to live openly. It went into the post immediately. It was important. And because it’s not a life I’ve ever had to live, the danger of disclosure hadn’t entered into my thoughts when I wrote the draft of the post. As soon as I heard it, of course, I thought, Oh my God, he’s right. I’ve never spoken or written on the topic again without incorporating that vital point of view – and fact.

The same goes here. Just as I don’t live in a way that advertises my sexuality, I don’t live autistically. I hadn’t thought of danger or connected consequences to these topics when I wrote the post. As soon as I saw the comments last night though, it made perfect sense. And just as in the story above, I will take the perspectives I gained to heart and integrate them immediately into my thinking.

As I wrote to one friend on last night’s comment thread ( Ed note: I’m leaving names out because, even though the conversation was essentially in a public forum, it feels hugely presumptuous for me to bring it here without regard for the privacy of those who offered their perspectives there. I am sharing their ideas though, because I think we all can learn from them together and because I need to share them in order to set the record straight about what my post lacked.) Last night I wrote,

These are excellent points and I am very, very grateful for the perspective and the opportunity to look at it from an angle that I hadn’t considered when writing the post. I will add an addendum to the post tomorrow – or, if I can manage it, will devote a whole post to adding these views. Thank you all so much.

So here I am attempting to fulfill that promise because I think this matters. I am always open to being told when I’m off the mark, wildly or otherwise — eager for it, in fact. And I am grateful for those who put in the time, effort, and emotional energy that it takes to educate a doltish non-autistic parent like me who is trying desperately to learn, doing so imperfectly, and integrating each and every bit of new perspective into the journey ahead. I am especially grateful to those who do so in a way that reflects mutual respect and that contextualizes my words when they’re wrong-headed. I try. I &%$@ up sometimes. I try some more. I will keep at it, and I appreciate your help more than I can ever express.

Two of the autistic advocates in the conversation last night expressed frustration at having to teach parents like me the same lessons again and again. I can only imagine how exhausting that would be. I know that I tire of constantly educating the people who come in and out of our lives, and even the ones who are permanent fixtures in it. While my own experience is a desperately imperfect parallel, making it impossible for me to truly walk in their shoes, it does give me a starting point from which to extrapolate, and I’ve got to tell you, at least from a rational perspective if not an emotional one, I get it completely. I’d be angry and tired and tired of being angry.

But unfortunately, we’ve got so far yet to go in this journey toward truly understanding the experience of our autistic brothers and sisters, and yes, even our own children, that these moments where we step over lines we didn’t see, where we inadvertently trip wires and get taken to task by those who say, “That is not reflective of me and who I am or how I think or feel,” will remain ubiquitous. I will do my best, as I always do, to do this right. But I’m human and I will screw up. We all will. How we handle it thereafter matters. Personally, I am indebted to those who, despite the deep frustration for them inherent in doing so, tell me when I screw up.

One of the last things that I wrote on the TPGA page last night was this:

thank you so very much. I’m so sorry that my post was so inadvertently offensive. I am truly grateful for the time, effort and clearly the emotion that you put into that comment. I will come back in the morning and read everything again so that I can truly take it all in. I take every bit of this to heart and am so grateful for the guidance.

I tried to sleep but it never came. But I didn’t write anything else on the page because there came a point at which I was simply too emotional to form coherent sentences.

I try. I try really hard. I want more than anything to understand. Sometimes I don’t get it. Sometimes I don’t see the whole picture. Sometimes I read something and mistakenly generalize it. Sometimes I inadvertently overstep my bounds. It seems that I was guilty of a veritable potpourri of  all of that yesterday and clearly some people for whom I have a great deal of respect were hurt by it. For that, I deeply and sincerely  apologize.

I hope that we all can continue the dialogue, no matter how difficult it can be. Again, I am grateful to those who feel like broken records, yet help to guide those of us who so desperately want to be allies in the truest sense.

I leave you where I often do – with the hope that when you read my words, they will act as a springboard for critical thought and that you will leave here and meander through the blog roll there to the right –> the one called “Vital perspectives from autistic adults.”

As I said in a post from May, “And on Tuesday, those parents heard my voice. And my voice that day was no more than a conduit for the voices of experience — KassianeSparrow Rose JonesAmanda BaggsTPGA,ASAN.”

Above all, that’s what I hope to continue to be. A conduit to the voices who can tell this story first-hand. Voices like my daughter’s, should she choose to (and / or feel, God-willing, as though she is able to safely and comfortably) raise it someday. My goal is for her to be able to make that choice for herself.

In the meantime, at the risk of sounding like a broken record myself, I’ll end with the last few lines of another post from  May.

In the sidebar, you will find links to all of the following, listed under Vital Perspective from Autistic Adults. I urge you to visit them. Get to know them. Hear what they have to say.

Thank you.

Amy Sequenzia

Autism and Empathy

Autism Women’s Network

Autistic Hoya

Bec at Snagglebox

Illusion of Competence

Incipient Turvy

John Robison

Just Stimming

Kate – Aspie from Maine

Kerry Magro

No Stereotypes Here

Paula Durbin-Westby

Thautcast

Tiny Grace Notes (Ask an Autistic)

Unstrange Mind

Yes, That Too

Thank you. 

Ed note: Please note that I changed any prior references in this post to “self-advocates” to autistic advocates / activists. Here’s why. Note: If that post is not unlocked, please check back. It will be soon. It’s important. 🙂

27 thoughts on “an imperfect journey

  1. Jess, my darling dear wonderful kind open minded and huge hearted friend, I want to say your grace, respect for others and inherently kind nature as well as your respectful delivery when you disagree with others or welcome others opinions when they open your eyes to a different perspective is something we could all learn from as we all journey through life as imperfect human beings.

    I love you!!

    Jersey

    PS. xoxoxooxoxoxox

  2. What Jersey said. You are no doltish parent. You didn’t %#%* up. You are the place the community goes for understanding and support. No one tries harder than you do to see and write about all sides for everyone. I learn from you every day. So many parents whose child is just getting their diagnosis come here and learn from your journey because you share all sides and connect the dots in a gentle, kind, and understanding way that keeps the whole family in mind – child and parent and siblings. And I love you for that.

  3. I think you are too hard on yourself. No one will ever completely understand anyone else, autistic or not. No one post, conversation, thought, will ever completely reflect everyone’s opinion – it just can’t. You are open to the ideas of others, and that is the biggest hurdle – I don’t think it is essential (or even fair to expect) that you reflect every.last.feeling that anyone has ever had on the subjects you discuss. It is great that you have the follow-up discussions – that helps to enlighten all of us – but don’t beat yourself up because you ‘missed’ something the first time.

    Hugs.

  4. I can’t imagine what it’s like to put yourself out there to such a large and diverse audience and have to constantly be concerned that someone is going to not constructively criticize or disagree with you,but be just plain nasty. It doesn’t mean I agree with you 100% of the time either, however, there is nobody on this planet I agree with 100% of the time and you have definitely opened me up to some
    different ideas and ways of thinking. Please
    please don’t stop. Don’t stop putting it out
    there. There are so many of us who appreciate what you are doing. Write what you feel, don’t censor yourself to please everyone because it is impossible, you can’t please everyone.

  5. You do the very best you can with what you have. I think it is nearly impossible, actually probably totally impossible to accurately explain the perspectives of someone who’s life you have not lived. As you said, you don’t live your life as an autistic. But you do live as a mother, and you view your daughter’s experiences through that lens – and you do a fabulous job, advocating for her, and helping others to understand her in the way that you do. But the real task of helping others to understand the autistic experience must come directly from those who live it in the first person – as challenging and exhausting as that must be for them.

    My point is, you’ll never be able to write a post that pleases everyone (and honestly that shouldn’t be your goal). You do a beautiful job with what you have, and I am honored to be able to follow you on this journey. And, for the record, I don’t think you screwed this up. I think you made your point as best you could with the information you had. This is your space, your blog, your place to go on and on about whatever is floating around in your head. This is your place to go to maintain sanity at the end of a long day. It shouldn’t ever be a place that keeps you up at night with worry. Like you have said so many times before, we’re all family here, and we all support you, or we wouldn’t be here in the first place. Hugs.

  6. Comments from Diary’s Facebook page:

    Comment:

    I am currently reading Temple Grandin’s book The Autistic Brain…so incredibly amazing! Has made me see things completely different. I always admire your willingness to say “I f-ed up!” and move forward. When we know better, we do better. xoxo!

    Comment:

    You handled that with tremendous grace. Not all of those comments were fair or kind (i was reading them early this morning and fussing aobut whether and how to respond). But you took the spirit of what they were really saying to heart and heard it. And without responding defensively or with equal harshness. A model for me in so many ways. Thank you.

    Comment:

    There is no book that comes with any child especially a child with Autism because u can’t go with what u now from ur parents telling u, grandparents, aunts, nothing!!! They have not gone through what we are going through so t is, most ties, very difficult…. Making mistakes is a part of learning, a part of perfection!! I can only hope to help my son the best way I know and learn as much as I can to maximize his potential!!! U are a great parent (fixed per commenters request), and. Great student…. It is not easy to be humble and admit that we make mistakes!!! I know my misses are all too frequent!! 🙂

    Comment:

    That was tough to read, the comments I mean. I hope I am raising my sons in a world where they can share their thoughts, but I also hope I can teach them not to rip apart other people. We as parents, I feel, are mostly trying to do our best. To support, accept, love, and advocate for our children. I’m sorry that this hurts feelings of adults with autism now, but the truth is, it is a hard job for us as parents.
    I have often been asked about my sons, but mostly my severe son, if I would “cure” him if a magic pill was available. My aNswer is always no. I would not know him without his autism. He would not still be the son I love so much. But, it would have been an easier journey for him had he not experienced this. But again, he wouldn’t be my son. It is a tough thing. You Jess, are a great Mom trying to do your best to consider all feelings. I’m sorry this caused lack of sleep. I hope that you think of all is Moms who appreciate do much your openness to share. You are an inspiration, and we are thankful for you.

    Comment:

    I am grateful for the rigor with which you approach life.

    Comment:

    I have written and re-written this comment and talked at length about these posts with my husband, who is autistic, because in my heart of hearts and I want to get this (being a wife/mother) “right”: for him and for our autistic son. There have been some really valuable lessons I’ve learned from the self-advocate community, and I appreciate those. But I’m also weary. I feel like it is too hard for parents to be able to discuss any of the negative aspects of autism without there being vitriol in the responses. Not all the responses of course, and not just from self-advocates or just from parents, but kind of across the board, such that I’ve stopped commenting on a lot of articles anymore, or reading the comments. I’m afraid to ask questions, lest the language I’ve used be picked apart, or be told I’m a bad mother because sometimes aspects of autism are heartbreaking for me (because they appear to be for my son). I’m not sure where I’m going with this except that I hope that other aspects of what you wrote were given positive feedback (I think the difficulty/impossibility of separating the autism from the person was an important point) and I guess I’m still wondering at your original question of how we create a way to talk about it.

    Comment:

    You really do amaze me and often I am one of those people that some times does not agree with what you write however you do put a unique perspective on the journey of autism from a parents perspective and for that I am grateful. Don’t beat yourself up for this post or others that might not have everyone in agreement. Everyone knows that you can’t be everything to everyone but you are doing the best that you can not only for your own family but for many other families as well. For that and just being brave and exposing this subject, I really do thank you from the bottom of my heart!

    • More comments from the Facebook page:

      Comment:

      WTG … you can always hold your head high knowing you respect others opinions and views 😉 SMH at some others but admiring you for your grace!

      Comment:

      Your journey is your own, and you should not have to apologize to anyone for where it takes you. I appreciate the TPGA community and I support their efforts, but I truly felt pushed away after the Dialogues. I admire the parents such as yourself, who have stayed and continue to reach out. You have handled this situation as you always do- with grace under pressure!

      • More from Facebook:

        Comment:

        this is important. we need to be able to have these kinds of discussions. everyone stands to grow and learn from respectful discourse. if it wasn’t so important, it would be this hard. Jess I give you credit for jumping in with both feet and throwing caution to the wind, in time maybe people will look back on this as an important watershed in the parent/self-advocate talks. hopefully we can all elevate our arguments and have more productive dialogs, because the truth is this: the day parents and self advocates get on the same page at last we will be a formidable force for change. praying i see it in my lifetime.

        Comment:

        Your previous post took courage and came from your heart… No need to apologize. Your current post, shows growth & again your amazing courage. Thank you Jess.

  7. Jess, every word you write comes from a place of hope, kindness, and a desire to help others. I hope this fact does not get lost in all of the on-going discussions. You’ve made me think a lot this week (more than usual!), and I thank you for that!

  8. Your post made me think and learn. I am trying to learn all I can about autism. I am also trying to get outside of my shy comfort zone to try learn how better to reach out socially so I can help my daughter do the same. It seems every time I do that I put my foot in my mouth and then I am horrified. It is good to realize that we are all human. I think your posts have been very brave, and you are open in your thinking. I wish you the best and will think of you as a mentor in being out in the world and trying to make it a better place.

  9. Dear Jess,

    Some of the above posters seem to be (I hope) accidentally coming from a place of “you can’t care about everyone’s (Autistic) feelings all the time” or something, and I know they mean to be supportive of you when they do this.

    But the actual you that I am actually supporting because I believe I see you as you are, is not a person who needs to hear that message as a form of support. The actual you is a person who listens and values learning and dialogue, and you think about what you hear. The actual you clearly does care: not for effect, but for real.

    You are not “pleasing everyone” (that’s insulting) or “reflecting every last feeling” (whatever that even means). And I am glad. And I was nonplussed by what you wrote yesterday because I am one who risks a lot and often blogs quite frankly about difficulties; and now I am one who accepts your thoughtful apology.

    Your thoughtfulness, and your ability to persevere in trying to understand even when things are complex and thorny — these are very important parts of your spiritual beauty, as I see it.

    Please don’t let misguided supporters make these virtues go away. I believe they mean to mean well, but while loyalty is a virtue, it is not as high and constant a virtue as integrity, and the will to Good.

    All blessings to you and yours.

    Love,
    Ib

    • Your words are the most precious gift I could receive this morning.

      Thank you for seeing. Thank you for knowing what matters and saying it out loud. Thank you for loving.

      Soul to soul beautiful Ib,

      Thank you.

    • What Ib said! I really appreciate this follow-up post. Everybody screws up or inadvertently hurts someone occasionally, because we’re human. Trying to sincerely understand where you went wrong, make amends, and do better in the future is a virtue, not “trying to please everyone.” I respect people who can do that, because I’m…less than good at it myself.

      • What I personally meant by “you can’t please everyone” is don’t censor your thoughts,feelings or experiences in order to please everyone. When bloggers/writers,particularly those who write about Autism,censor their true feelings or experiences for fear of upsetting people, it’s not authentic. As parents of autistic children, our perspectives are obviously going to be different than those who are autistic themselves. Constructive,respectful criticism is great, its the negative without being helpful stuff I can’t stand. (My response isn’t directed at you,just my reasons for why I used that phrase)

      • Well sure, that’s the case with all writing. And I tend to believe that if you’re not stepping on *somebody’s* toes, you’re probably getting very little done. But taking into consideration whether what you write may upset a group of people for incredibly real, valid reasons is not the same thing.

  10. This: “I try. I try really hard. I want more than anything to understand. Sometimes I don’t get it. Sometimes I don’t see the whole picture.”

    That you try, at all, is what matters. You try to understand, to explain, to reframe the unframeable, to reach out and to grow.

    Go easy on you, as you would expect others to be on themselves…

  11. Jess, I have been reading your blog for several years now (and I LOVE it, btw), but I have never actually written a comment before, because I am extremely shy and very private. But as an Autistic adult, I just had to tell you that I cannot fathom why ANYONE would take offense at your previous post. I read it and thought it was one of your most beautifully written to date. After reading this apology, I went back and reread the previous post twice, and I STILL cannot comprehend why people would take offense. We Autistics love things that are black and white, cut and dried, and we loathe ambiguity, but the fact of the matter is just what you said: These are difficult, complicated, sticky issues, and there is no ONE right way nor ONE clear, perfect definition that will suffice.

    As an Autistic, I am troubled by how quick some of “my” people are to take offense at the well-intentioned words of others. Neurotypicals do it too, of course, but as a population that has long been the victim of misunderstanding, I would hope we might be more sensitive and aware of the disastrous consequences that can result from jumping to conclusions. We of all people should take the lead when it comes to rational, respectful discourse. We accomplish nothing when we nit-pick, split hairs, mote-magnify, find fault, and allow our emotions to trump our reason. We ALL have different ideas, and we all experience life differently. If Autistics and the neurotypical parents of Autistic children ever have a HOPE of coming together in a mutually supportive and respectful community of awareness and acceptance, THIS MUST STOP. We will NEVER be able to agree on the things that are TRULY important, or even come close to seeing eye to eye so long as BOTH sides insist on “being offended” by opinions, thoughts, musings, and words that differ from our own. And if WE can’t come together, how on earth can we expect SOCIETY to be accepting?

    We cannot AFFORD to be defensive. We cannot AFFORD to feel slighted or offended. There is too much WORK to be done, and the work is too important for us to waste time and mental energy apologizing to one another for every little detail that displeases somebody somewhere. Can we not have DIFFERENT opinions? Can we not “agree to disagree” and still respect each other? Come on, folks, let’s take a deep breath and allow one another to be HUMAN.

    As an Autistic, I don’t want to be “cured” (even if that were possible). This is who I am, and there are things about myself, which can be ascribed to Autism that I very much like and wouldn’t want to change. That said, I do not feel like a “traitor to the Cause” for disliking some of the other things Autism brings, which are unpleasant (to say the least): I WISH I could go grocery shopping without it being sensory torture; I WISH I could be in public places comfortably without feeling overwhelmed and wanting to scream from pain and fear; I WISH I didn’t feel terrified to leave my house… CONSTANTLY; I WISH I could get some relief from the ever-present, unrelenting anxiety; I WISH I didn’t have to be a slave to my rituals and routines in order to function; I WISH my brain wouldn’t perseverate so much; I WISH I could tolerate being around people more; I WISH I didn’t still have the occasional meltdown, but that if I did, at least I wouldn’t lose control and hurt myself. But I do.

    And I UNDERSTAND when parents of Autistic children lament in anguish over their children’s pain and struggles, and I do not think it makes them enemies of Autism Acceptance when they do so. I think you hit the nail on the head, Jess: The celebration AND the pain are part of the same coin – you cannot have one without the other – and I think it is illogical to expect people to ENJOY the pain. Thank you for your words. You are doing amazing work and we Autistics are lucky to have your voice. This blog is YOUR space and your opinion MATTERS. The post was beautifully written (as was the apology), but I’m sorry you felt like you needed to apologize. You said NOTHING wrong.

    Respectfully with admiration, Heather

    P.S. Brooke and I have something in common (several things actually): I ADORE Sesame Street. I have ALL my books from childhood (which I read when I need to feel comforted), as well as a cassette tape of Bert and Ernie songs, a couple of “Old School” DVD’s and “Christmas Eve on Sesame Street,” which I watch rather a lot and quote all the time (my Autistic husband is very patient). I very much enjoyed reading about your recent trip to “Sesame Place.” I had no idea it even existed. If it didn’t require being around people I should like to visit it someday and meet Bert and Ernie. I think it is BRILLIANT that you allow Brooke to be HERSELF and don’t try to cram her into some kind of silly, “age-appropriate” mold. You are awesome.

  12. Thank you all for your comments – for taking the time and emotional energy to join the conversation no matter how treacherous it might sometimes feel (from all angles).

    I wish I had it in me to respond to everyone individually. I hope you’ll understand that I simply don’t. I am ceaselessly grateful for this community and the overwhelming love that I find herein – in myriad forms.

    Group hug?

  13. The feeling of having offended those that you most want to understand and support has got to feel devastating! Please know that by sharing this you have helped the rest of us learn through your experience. The autistic community has shown us once again how much we still have to learn. May the circle of learning and respect, along with the evolution of our thinking continue, we still have along way to go. Much respect to all those involved, most notably Ib.

  14. Jess,
    Your heart is always always in the right place. I have so much respect for you – for how your write, for how much you share and teach, for how you own your words and your feelings. I truly learn from you – not only about the many different sides of autism but I also learn grace, poise, compassion and reflection. Thank you for all you write, thank you for being so genuine with your words and thank you for teaching all of us.
    Love you my friend.

  15. I can’t speak for anyone else, but I am a neurodiversity activist, an autistic self-advocate, and I have written explicitly about self-injury and explicitly placed it within the context of pride and dignity and the right to self-determination. Those arguing for a pride/dignity/self-determination/neurdiversity/acceptance approach to self-injury may be few, but we do exist.

  16. Jess, I have to say that the manner in which you write with such openness is wonderful. You have such a quality of grace and understanding while at the same time seeking to learn more from those around you. You speak from your heart and from your thoughts. You do your best for your daughter and our community in the best way that you can. We all fumble and trip over our own words and sometimes do not realize that the way they come out can be interpreted in one way or another but you, you my dear, you find the balance in it all and strive to do better for you, for us, for everyone.

  17. Jess, I have read and re-read these posts and comments forward and back again. For the life of me, I cannot see anything that was poorly written or intentionally offensive. Having said that, we are all entitled to our own feelings and interpretations and I truly value your ability to adjust and incorporate the voices of many into that brilliant mind of yours. The dialogue between you and your readers is better than any counseling / support group / ladies night out I could involve myself in…which brings me to the point of my comment. As parents, we try to understand, empathize with, and enable our children, no matter what their strengths and challenges are. And as parents, we are also entitled to our OWN take on the experience of loving, sharing with, and caring for the children in our house. Sometimes, our perspective will guide us just south of the hypothetical mark. (Ask any parent of a teenager and they will attest to that!) And while we might miss that mark from time to time, we are generally willing to aim again. After all, life isn’t about the end game. It’s about everything that happens in the messy middle. We are constantly growing and evolving…adjusting the lens through which we see ourselves and others through. Your lens, my friend, is in particularly sharp focus, because you reassess it at every opportunity. I may NEVER think about autism quite right, try as I might. All I’ve got to go on is my giant heart, my swelling love for my children, my unique vantage point, and my unyielding flexibility. Same as you. But I hope it means something that my take on it is worthwhile, as it has been derived from a non-stop analysis of what my kids are putting out in the world and my emotional reaction to that set of clues. And that it is valid simply because it is MY experience as a parent, which is JUST as important as the experiences my children have. We simply cannot deny ourselves a voice in all of this for fear of misrepresenting those we are lovingly speaking for / with / about. But we CAN readjust. Just as you have always done. I hope your readers out there are as willing to do the same for you…for it is imperative that we all exercise our flexibility in this matter. To all of the autistic people we love and respect, have patience with us. We are trying, really trying to see you as exactly who you are. And please, with love, embrace our journey as parents. We want and need to be seen too. xoxoxo

  18. So eloquent, so beautifully expressed, and so full of courage and love. It’s always nearly impossible to write with feeling about personal subjects without becoming sentimental, but you’ve done it.

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