Mom prepares me,
but nothing can inoculate fear colored blue
masked in lights, shining brightly.
The terror seeps through.
Awareness disguised as tolerance is not the same as love.
An uneasy embrace may appear affectionate,
but can feel worse than a slap.
Words said with anger are not kind,
no matter what each word means by itself.
Look kindly
choose many feelings,
but please do not choose blue.
#WalkinRed2015
The other week I was present for the following typed exchange by two people. Both are Autistic and both cannot use spoken language to communicate. (Their names have been changed, as even though both agreed to have their words published here, this issue is sensitive and distressing, as well as deeply misunderstood by most non autistic people.)
Layla: You have an extremely loud stomp. (This was in reference to the noise Jerry made several days earlier and that Layla heard while working in a neighboring room.)
Jerry: Is that a guess or are you certain?
Layla: If you tried to hide it then you gave away the secret.
Jerry: That is what I am behaving like on some days but proud I am not.
Layla: I heard it all and was curious and wanted to give help.
Jerry: Really do you believe that I am not evil? (J. turns his head so he is staring down at the table. His body is completely still. It is a noticeable change from the way he usually sits while having a conversation with Layla.)
Layla: Evil is not this and best to forgive yourself.
Jerry: Thank you for not judging me.
Layla: I only ask for the same respect.
Jerry: The deal is on.
I asked Layla and Jerry if I could transcribe their conversation and publish it here because non speaking Autistic people and the way they act in times of stress or overwhelm are so poorly understood. Non autistic people who witness the actions (often termed “behaviors”) of a non-speaking Autistic person who is overwhelmed, perhaps frightened, often ashamed, unable to control their movements and unable to express themselves are often viewed with annoyance, irritation, fear and/or bewilderment. As the non-speaking person cannot make themselves understood, they are at the mercy of those who care for them.
As I watched this conversation unfold I was struck, once again, by the disconnect between what most of the world believes about autism and Autistic people and the reality. Jerry expressed profound shame and upset and Layla responded with identification and deep compassion.
Their exchange reminded me of something Emma wrote about four months ago after having had a terrible night. I wrote about that ‘here.’ One of the things she typed was: “Pounding terror is all that remains.” More recently she wrote, “The raging screams in my head are starving and want to consume me.”
Raging screams… Pounding terror…
August, 2014
I speak with a researcher who says, “we need to hear the pain and needs of the parents of individuals affected by the disorder.” She goes on to say, “Nobody else can know better what the needs of the affected person are.” “Oh,” I say, “how about speaking with Autistic people?” Surely they know better than any what it’s like to have once been a child. The researcher tells me this is not their focus. I try to understand what I’m missing, what is the focus then? I ask more questions. I listen. As I listen I am aware of my heart. It feels louder, is that possible I find myself wondering. Can one’s heart actually beat harder? I decide this cannot be true. I’m upset. I know I become more aware of my heart when I’m upset. I try to listen to her words, but I’m not able to hear all of them. I know I’m missing some of what she’s saying. I concentrate harder. My throat constricts. My stomach tightens, my face feels warm.
I try to make a few helpful suggestions based on what I hear her saying. But she is not interested in suggestions. I try again. It is as though we are speaking two different languages. I cannot understand hers and she seems unable to understand mine. We are becoming exasperated with one another. I try to provide answers from my perspective, but this is not the focus of her research she tells me. The needs of Autistic people are not the focus. I feel some confusion. How is this research? How can one do research if the questions are already skewed? Isn’t research supposed to be unbiased? Isn’t the point of research to learn more, to understand? But we are trying to understand, she tells me.
We are circling each other with growing wariness. The conversation began one way and somewhere it took a turn. I’m trying to both back track to see where it changed from cordial, curious and open, to distrust, while also still listening and trying to understand what this research is meant for. My daughter is behind me. She drifts past where I’m sitting and stops. She is looking up toward the ceiling, her head slightly cocked to one side. I know she hears this conversation. I know she can feel my growing tension. “I’m just going to take this call into the other room,” I whisper to her. I go into the other room and shut the door. I don’t want my daughter exposed to more of this.
The constant barrage of words – Disorder. Pain. Afflicted. These are the words the researcher uses. These are the words, like a never-ending eddy threatening to pull my daughter down. I once used these words too. I once said things to others in front of her. “You walk forward and not backward,” Emma wrote the other day. Just before that she’d written, “…regrets are not needed.” I owe this to her. I must move forward and not backward. Regret, like those words, pull me down. I have made a commitment to become more aware of my regrets and to not allow them to keep me stuck.
I become aware of the researchers voice again. She really wants to know, she says, about the pain. And I lose my patience. I tell her no one would dream of asking me this question regarding my non autistic child. I tell her that if she is interested in understanding Autistic children, she should ask Autistic adults to describe what it was like. She says, “Well, if you’d like us to speak to your daughter we can certainly do that too.” But that isn’t what I suggested.
My exasperation with her has now crossed over into anger. She compares autism to Parkinsons and I’m furious. “Let’s not do this,” I say. We are practically competing with each other as to who can hang up faster. I am madly hitting the red button on my phone to hang up, but it won’t disconnect. This would be comical if I weren’t so upset. I have a moment when I see the humor, but it’s fleeting. I remind myself to come back to this feeling. Finally I stand there looking at my phone and I feel utterly defeated. This was an opportunity to offer another point of view and I failed. Miserably. I go out into the other room, where Emma is listening to music and dancing. I watch her, marveling at her beauty, her grace, her joy. In contrast, I’m a churning mess of anger, indignation, sadness and upset.
“We are interested in the needs of the parents,” the researcher said. More accurate information, unbiased research, questions that are not skewed to get a particular response, training that would have helped us support my daughter to communicate through typing at an early age, removing the emphasis on spoken language, abandoning functioning labels, showing me that my neurology has deficits too, that we have devised a society skewed to accommodate non autistics who use spoken language to communicate and how that benefits those of us who speak and aren’t Autistic, but hurts those who are, helping me understand that we have set up our schools to segregate a population that should be included and not excluded. My needs? Change the way autism is viewed and spoken of and my needs will dramatically decrease. Help me navigate parenting an Autistic child by giving me access to Autistic people and culture. Show me others who are parenting with love, compassion and complete and utter respect for their child. Most of these are things I’ve found for myself, but what a wonderful difference this would have made earlier.
Today I wanted to do a companion post to yesterday’s “Emma Discusses – Awareness“, with a post entitled, “Emma Discusses – Acceptance”. I love when Emma tells me to put something she’s written on the blog, because her words are always so profound and insightful. But once we returned home Em was too tired, so I resigned myself to writing about Autism Awareness and what that means to me. After all today is World Autism Awareness Day.
A year ago I wrote a post – Autism Awareness? where I discussed how my awareness regarding autism has changed over the years. The next day I wrote – “What I Wish I’d Been Made Aware of When my Daughter Was Diagnosed With Autism“. After rereading those posts, I then remembered a couple of others I’d written about autism awareness and acceptance, ‘here,’ ‘here,’ ‘here,’ and ‘here‘. And after all that I just felt cranky. Seriously. Just cranky.
I don’t look forward to April the way I once did. April is a loaded month when many of my friends feel they must hide or cannot look at social media because they know they’ll be triggered by all the calls to “light it up blue,” the hype from organizations like Autism Speaks who seem to do nothing, but speak… it’s exhausting and in the end the awareness they’re pushing isn’t awareness that helps either me or my daughter. What they seem to call awareness, is to my mind hyperbole, fear mongering and irresponsible. I’ll be honest, I would be happy if Autism Speaks folded up their little tents and found something else to rant about.
In addition to Autism Speaks’ dire calls for action, the CDC released new statistics – 1 in 68 – and I just groaned because I know how those numbers will be used, forget that they’re almost completely meaningless and actually not an accurate number as Jim Martin explains in his most recent post, 3 Reasons Why Canadians (and Everyone Else) Should Stop Using the 1 in 68 Autism Stat (For Now). More fear. More anger. More calls for action. More listening to people who don’t know what they’re talking about. More and more and more and more and I just want to crank up Pharrell Williams’ Happy at full volume, put it on repeat and dance.
So in the midst of all the calls for awareness I’m going to hold my daughter close, revel in her presence, sink into my immeasurable gratitude that I get to be her mom and feel the joy in knowing she is a young woman who is talented, funny, creative, wise, insightful, kind, and more forgiving than anyone I’ve ever met. And, boy, am I proud of her.
How’s that for a little awareness?
Emma ~ 2010
“I want to talk about autism, but I am dear-like because badly needed information is angering.
Assuring many people understand about neurology they do not have is difficult.
I want the world to have another opinion to work with.
I am happy but people find that impossible to believe. That causes me anxiety.
Acceptance and kindness are crucial for all people. As one who is constantly thought less than, forgiveness is like a soothing bath and the talking people might learn more if they did not talk so much.
There is wisdom in the echo silence makes.”
Emma just wrote this. She asked that I put it on the blog.
“There is wisdom in the echo silence makes.”
It turns out we are living with the buddha.
Emma ~ 2004
Posted in Autism, communication, Parenting
Tagged acceptance, Autism, autistic, forgiveness, kindness, love, loving kindness, non-speaking, Parenting
The first part is ‘here‘.
This woman, who was once a girl, learned a great many things once she stopped trying not to feel. This was a huge surprise to her as she believed she already knew a great deal. She learned that people terrified her for they were capable of doing tremendous harm and she came to realize she had spent many years avoiding all people as a result. Most of her pain in her adult life came from the expectations she held and not from the actual people or things they did or didn’t do. She learned that no one person could ever be all she wanted and hoped for, but that a group of people could. She learned that a community with a shared goal was more important than individual grievances and that her ego often pushed her from the path she’d chosen.
She met a wonderfully, flawed human and together they had two beautiful children. With each child her world expanded and grew. She often reflected on all she’d learned during those terrible years of her earlier life and tried her best to apply what she was learning to her new life as a parent. But her youngest child, a strong, independent, baby girl who held an uncanny resemblance to her mother had a dreadful time tolerating certain feelings, sensations and the world. She could not communicate through words and her mother watched her in helpless despair as she saw herself, her early self, her former self reflected in her child’s upset and frustration. The mother would do anything to take that pain away so her daughter would not have to go through what her mother once had. The mother would walk to the ends of this earth if it meant she could alleviate even some of her daughter’s massive physical and emotional discomfort.
And so, without even realizing it, the mother veered off the path laid out for her by so many others. She did not begin using substances again, but slowly over time, she found herself moving away from one of the key tenets of her new life – she began to believe she had power over another human being’s neurology and that she knew what was best for another. Instead of helping her child, she began to fight against her child. She did not think of it in this way at the time. She thought she was fighting FOR her child and for many years this is what she told herself and others who asked. She was fighting for her child and it was a noble fight, she would go to her grave fighting, and, by the way, in fighting she avoided a great many feelings. She did not know this at the time, but in fact this is what happened. And while she was busy fighting and desperately trying to keep all those messy feelings at bay, her child was hurting and feeling increasingly separate from her mother, (we cannot know this for a fact, but in retrospect the mother sensed this to be true).
More to follow…
Yesterday Richard wrote a wonderful post on his blog entitled ~ Happy Father’s Day. In it he talks about being a father and how having children has changed him and his life. He ends the post with, “To all our children, thanks for making our lives matter!” I love that. That’s it, right there. That’s the feeling I’ve had, but couldn’t find the words to so beautifully or succinctly express.
Richard also wrote, “…We got a beautiful boy, Nic. Eighteen months later, we got a beautiful girl, Emma. One of each, as they say. We got “one of each” in another way, too. One autistic, one not.” I read that and smiled, because it’s so true. We have been fortunate enough to have a child of each sex AND of two different neurologies! Three years ago I would not have been able to write any of this, I was still in the – Autism is tragic – mindset. But happily all of that has changed. Some people object to those of us who have chosen to celebrate our child’s neurology. They say we are sugar-coating what is real and difficult and makes it seem less serious than it is. I disagree with that thinking. I think we can still acknowledge the massive challenges our Autistic children face in this world, while still celebrating who they are and the beauty of their specific way of thinking and being.
I do not, for a second, believe that my daughter has an easy time or that she will not face all kinds of things a non Autistic peer would not have to deal with, but I do not need to increase her challenges by not accepting her, believing in her and celebrating her, exactly as she is, now, in this moment. Adding my expectations, despair and ongoing critique and comparison of her, to the very real issues she must cope with on a daily basis does not make her life easier. And I really want to make her life easier, not harder. I’d like to be the person who champions her, makes the bumps she will inevitably face a bit less bumpy and help her navigate some of the twists and turns of life, by giving her acceptance and unconditional love for every aspect of her being.
I keep thinking about all our children who have trouble speaking, how when they are able to communicate in some way, either through typing or speaking, we non autistics are far more likely to listen and assume intelligence than not. I keep wondering what would happen if all our time, money and energy were spent on finding ways to help our children communicate through typing and other AAC devises, instead of on cures; would we see a shift in society’s perception regarding autism? Or would all those people dismiss their words because they are written and not spoken? Amy Sequenzia writes about this ‘here‘.
You see, we were one of those families who pursued the bio-med route. For years I tried all kinds of things, thinking we could cure. As long as I believed in a cure, everything else took a backseat. What I didn’t realize was that accepting and celebrating my child, fully and without amendment was the answer I had been looking for in all those doctors and specialists who claimed cure remedies. The remedy wasn’t a cure, the remedy was celebrating the child I have, exactly as she is – that’s the remedy.
Posted in Autism, Autism Acceptance, Parenting
Tagged acceptance, Amy Sequenzia, Autism, Autism Cures, biomed, non-speaking, Parenting, Richard Long, The Book of Paul
At a certain point during Richard’s radio show the other night, where he was featuring Moms, he asked me about those years when we were determined to find a cure for our daughter. I didn’t want to take up time on the show to talk about all of that because there was so much to cover, but also because it makes me really sad to talk about it and I also know it is hard for many of my Autistic friends to hear, two of whom were guests on the show and many more who I knew were listening! I try hard not to live in regret, but I’ve done things that I really DO regret. Things I really do wish I could go back and erase and do again differently. More than anything, all those therapies and bio medical treatments we did, fall into that folder labeled “Things I wish I could do over.”
My reluctance to talk about all of this the other night on the radio wasn’t because I don’t think it’s important as much as it’s really painful to talk about and I know, for many of my friends, people I love dearly who happen to also be Autistic, it is very painful for them to hear me talk about those years, all those years when I was so intent on curing my daughter. It may remind them of their own upbringing. It may bring up all those devastating feelings of being unworthy or that they were somehow damaged or diseased, or any of the other hurtful words people use when discussing autism, that hurt them. So to my Autistic friends, please skip down to the final paragraph. The last thing I want to do is cause more pain and suffering to those I love.
At the time, after Emma’s diagnosis was given, I believed autism was something that could be “treated” the way one treats a disease. Only it isn’t a disease. But at the time I thought things like vitamin supplements , homeopathic remedies, therapies like ABA and diets could actually remove the “autism”, that these things would somehow transform her brain from an Autistic brain to a non Autistic brain. I know it may sound over the top, even ridiculous to many, but at the time, I wanted to believe and so I bought into the idea that autism could be ‘removed’. The concept of someone being pressured into learning to “pass” as non Autistic and the massive emotional and physical toll that inevitably takes, was not something I knew about at the time. It never occurred to me to wonder what the fallout might be or how my own child’s self-esteem might suffer as a direct result of what I was doing and saying.
Over time, as I kept trying different things, which culminated in going to Central America for stem cell treatments, I continued to believe, being the very best mother I could be, meant doing everything I could to “remove” her autism. I believed all those words that are used to describe autism: disease, affliction, epidemic and crisis. Autism was BAD. Autism meant all kinds of things and none of them were positive or beneficial. So that’s what I pursued – a cure. And I pursued a cure with the same dogged persistence I now apply to changing how autism is viewed by others. Where I once was determined to change my daughter, I am now determined to change society’s views of autism and, it must be added, society’s views of Autistic people.
You cannot talk about autism without talking about Autistic people. Yet people do all the time. They talk about autism as though their words will have no affect on those who are Autistic. But you can’t do that. When we talk about autism we ARE talking about our Autistic children. We ARE talking about our Autistic friends. We ARE talking about Autistic people. What we say, how autism is depicted, DOES impact those who are Autistic . It does directly affect how others then treat them. To pretend that all the derogatory language used has no direct effect on Autistic people is ignoring that fact. And this is where all of this no longer is just about my daughter and the risks I took and the impact my actions have had on her. This is about something far bigger than any one person. This is about a segment of the population who are Autistic and the fallout they must cope with from all of us talking about them as though it wasn’t about THEM, but instead was about a word – that word being – Autism.
Toward the end of the radio show, Lauri Swann spoke of how her son, Henry developed a relationship with his mentor Tracy Thresher and how transformative that was for him. I reflected on how magical it was for Richard, Emma and me to visit Lauri and her family during the screening of Wretches and Jabberers this past April. We reminisced about the evening before the screening, when we all went back to Lauri and Russ’s home and everyone sat around their dining room table typing to one another. The only word I could come up with to describe that visit was “magical“. And it was, because like the Autcom conference last fall and the Syracuse conference this past winter, being in an atmosphere of inclusion, where every single person is treated with the same respect as anyone else, where all are treated equal, is magical. How did we move so far from those words in the Declaration of Independence ~ “We hold these truths to be self-evident, that all men are created equal”? How did we get to this other place, where an evening like the one I’ve just described is considered out of the ordinary?
Now, sitting here writing this post, I am thinking about two more magical days and evenings when Ib came to New York City and stayed with us. Ib is like family. My children adore her. My husband adores her. I feel honored to know her, let alone call her my friend. I don’t know how to talk about all of this when lines are drawn, when words are used that separate and divide. I can’t do that and I don’t want to live in a society that does. What people do not understand fully, or cannot completely appreciate, is this – when we stop dividing people into categories of us and them – we open ourselves up to the experience of being united, of really feeling that indescribable magic of connection. The beauty of belonging. The joy of interacting with our fellow human beings and rejoicing in our diversity. There IS magic in that. This is what I wish all human beings have the opportunity to experience. This is what I hope I will live long enough to see occur on a grand scale.
Henry & Tracy during our magical visit with Lauri’s family
Adrianna, Amy Sequenzia, Em & Me
Nic & Ib on the High Line
Posted in Autism, Parenting, Stem Cells
Tagged acceptance, Autism, autism acceptance, autistic, Autistic Role Models, blog talk radio, diversity, equality, Mother's day, Parenting, power of words
It’s taken me decades to figure out that whenever I am angry, fear is lurking. All kinds of people talk about the association between anger and fear, but it was not a thought I was able to appreciate. It’s still not the first thought I have when I am angry about something. It’s not even the second thought. In fact, I’m lucky if it’s something I can remember at all when I’m angry. Yet, if I look back on all those years when I was so very frightened of my daughter’s diagnosis and what I assumed that meant for her future, I see how linked the two were. But it was the fear that grabbed me by the throat and no matter what I did, it seemed unaffected and unwilling to let me go. It was the fear that made itself known to me; the anger was far more subtle and insidious.
“When you sense a threat your mind generates fear and anger. The fear you generate is part of a flight response from your physiology. Anger is the emotional energy you generate for the fight against that perceived threat. What can be confusing is that your mind creates fear and anger even when the threat is just imagined.” ~ Pathway to Happiness
I understood things like the above paragraph. In a calm state of mind, it made perfect sense that my anger was rooted in tremendous fear, even if imagined. What did the future hold for my daughter? How was she going to get through life? How would we be able to keep her safe? How would she fend for herself? Would she be able to fend for herself? Who would take care of her once we were gone? Fear. Fear. Fear and more fear. And then, without even realizing it, I would find myself furious. Enraged. And my rage found the perfect target. Autism. Autism was what I was furious with. Autism was what the problem was, so it stood to reason that if I could remove it, all would be well. So this is what I set out to do. Except that my daughter happened to be Autistic. But if I didn’t say it that way I could continue to separate the two. I could continue to tell myself I was fighting the autism and not her. I could continue to believe that my anger with autism would not affect her.
“Anger is the natural emotional reaction to what the mind and imagination are doing. The way to overcome anger is to change how the mind imagines stories and how much you believe them. When the mind imagines painful scenarios you naturally produce anger. To reduce and eliminate the anger it is necessary to shift the stories that the mind imagines.” ~ Pathway to Happiness, Understanding Anger
That quote more than any other sums up exactly what happened. I had to change the story that my mind was imagining. Instead of thinking – my daughter is locked inside an autistic cage that I need to find the key to free her from – I had to examine everything I thought I believed and start from scratch. I had to rethink how I viewed autism, my daughter and how the two were completely intertwined and one. I had to dissect all my preconceived ideas about autism and Autistic people and what I thought that meant. I had to be open to other ideas about it.
For me that began with reading books. First books like Representing Autism by Stuart Murray, Unstrange Minds by Roy Richard Grinker and Autism and Representation Edited by Mark Osteen and then I found blogs written by Autistic people, see the Resources page on this blog. From there I began developing relationships with Autistic adults, not just the occasional interaction, but real friendships. People I have grown to love deeply. I had to find people who were non-speaking, or spoke intermittently. I had to find people who were obviously Autistic and couldn’t “pass”, I had to spend time with those people. And what I found was that far from being miserable, these people were living their lives, doing things, had found purpose and meaning and were active in their communities. The very things I had been told could not, would not be possible for my child.
“Between stimulus and response, there is a space. In that space lies our freedom and power to choose our response. In our response lies our growth and freedom.” ~ Victor Frankl, Man’s Search for Meaning
And so I found I had a choice. I could choose to continue to live in fear of autism and all that people were telling me Autism meant or I could choose to embrace my Autistic child, learn, enjoy and let go of all that anger and fear as it came up, as it continues to come up. Each time I feel fear and anger, and I do on a daily basis, I now know I have a choice. I can fall into the fear and anger or I can step back from it, realizing it’s a mirage, realizing that as painful and real as it feels it is not a fact, it is a construct of my thinking and I can sit with it and not react to it. Because my fear has me running away and my anger has me shouting, either action keeps me apart from others. I have learned that the answer to both is to do something else. And that is this – walk towards instead of away, speak lovingly instead of shouting and pushing away.
Posted in Autism, Autism "Awareness", Autism Acceptance
Tagged acceptance, Anger, Autism, Awareness, fear, loving kindness, Parenting, Roy Richard Grinker, Stuart Murray
Accepting myself has been an ongoing process and it began well before I became a parent and got married. It began more than seventeen years ago when I was flailing about, bulimic, unable to stop using my substance of choice (food) the way a drug addict uses crack. I have written about this period of my life before ‘here‘, ‘here‘, ‘here‘ and ‘here‘ so I won’t go into great detail again now. Suffice it to say, I was out of control, scared, suicidal and I couldn’t stop binging and purging. And then someone who had once been an active alcoholic and obese, with more than a hundred pound maintained weight loss, said to me, “What if you accept that this is where you are?”
I remember I looked at her in shock. Even now, thinking back to her words I find I am holding my breath. It was such a stunning statement. Never had anyone suggested such a thing. To me it suggested complete defeat. It was blasphemous. It was the single most heinous suggestion I’d ever heard. I think I said something like, “Are you kidding? What do you mean?” I can no longer remember her exact words, but she said something like, “You just told me you can’t stop binging and throwing up. You just said you are out of control. You just gave me a detailed description of what you do, how completely depressed you are, how you’ve tried for twenty-two years to control yourself and yet here you are, still unable to. What if you told yourself – okay. This is where I am. I am out of control. I hate it. I hate feeling this way. I can’t stop. I can’t stop hurting myself. I can’t stop binging. I can’t stop throwing up. I can’t stop thinking about food. I can’t stop abusing myself. This is where I am. I accept that I am here. What if you did that?
I didn’t have an answer. I couldn’t think. I felt like I was being given a pop quiz I hadn’t studied for. I stared at her and then she did the next thing that I could not understand or wrap my mind around. She opened her arms in embrace and hugged me. I remember my confusion, the feeling that this couldn’t be right, that she was unhinged, that the only thing that could save me from self-destruction was more self-criticism, more self-loathing and more self-recrimination. But I also knew what she’d said made some sort of bizarre sense; for twenty-two years I’d been upping the self hate talk to no avail. All that criticism I kept dumping on myself had gotten me exactly where I was – at a dead end. So I took a deep breath, held onto her hand and took a metaphoric leap into the unknown. The unknown of acceptance.
Just in case you’re wondering, it didn’t happen as quickly or as easily as this may sound. That leap took years of practice, of gently reminding myself that whatever I was feeling, whatever I was doing, I could accept that in that moment I was where I was. It took years and years of cultivating awareness, of being able to see when I took up the whip that I could also put it down again. Kindness, compassion, gentle reminders and acceptance, this is the road I have tried to stay on. As I said, this is very much a work in progress. Some call it a ‘practice’ because ‘work’ sounds difficult. My experience with acceptance has been that it is “work”. It is not easy for me. It does not come naturally. I have stumbled along the way. I continue to wander off at times, only to be brought back, gently, kindly and with compassion by others who are on the same path. It takes gentle reminders, many nonjudgmental nudges to move back onto the path of acceptance. But I have seen the light and know to follow it even when it grows dim.
My experience with acceptance regarding autism has followed a similar trajectory. You might think – why didn’t she ‘get it’ right away? Why did it take so long for her to remember that what had worked for herself would work with this too? And the only answer I have is this – I forgot and I couldn’t see that they were connected. I didn’t see the value in accepting autism because I didn’t see my child as Autistic. I saw her as having been diagnosed with a word I feared and didn’t understand, and therefore was not going to accept. Again it felt like defeat to accept. It has only been a little over a year that I was able to make the connection. And the thing that helped me make the connection came in the form of yet another person who accepted me and all my fear, guilt and shame with compassion. Once I was able to make the connection, became aware of my lack of acceptance and allowed that to be, without adding criticism and judgement to it, was I finally able to begin the process of true acceptance.
Acceptance of ourselves and where we are in this moment opens us up to the wonder of all.
Pascal, Emma, Harvey & Henry typing to each other – April, 2013
Posted in Addiction, Autism, Parenting
Tagged acceptance, addiction, autism spectrum, autistic, Awareness, Bulimia nervosa, compassion, kindness, Parenting
There’s a great deal of talk about acceptance regarding autism this month, which is a wonderful shift from all the talk about “awareness”. As I think more about acceptance I am aware of how often I think about “embracing” as in embracing all that each of us is, without trying to mold ourselves to be something we aren’t. What if instead of doing everything in our power to force our autistic children to behave like some imaginary and impossible non-Autistic version of themselves, we instead encouraged them to be the very best Autistic them they could be? The same way we do everything in our power to help our non Autistic children be the very best they can be.
Isn’t that what all of us are trying to do? Aren’t we all trying to be the very best we can each be? So what does that look like, how do we do that? Well, by recognizing what we’re good at, for starters. One of my brothers is an astrophysicist and the other is a micro-biologist. My mother was a chemist, my father a financial advisor and I don’t have a “science-y” gene in my entire body. In college I did everything in my power to avoid both science AND economics. These subjects are of no interest to me. Were someone to tell me, well, you know, your most successful same age peers all love and excel at these topics, therefore you need to apply yourself more to them, and I was then forced to take these classes and was not allowed to pursue my love of art, drawing, design, literature and writing, I would be miserable.
I don’t want to spend my life crunching numbers, looking at stock portfolios, and peering through microscopes. None of that interests me. Hand me a book on quantum physics and I fall asleep. The only good that comes from giving me books like that to read is the money I save on unfilled Ambien prescriptions. I will never be, nor do I want to be, a scientist or economist, I accept this fact completely. I don’t feel ashamed by my lack of interest. I don’t feel this is something I should feign interest in. I have other interests and talents; I focus on those and am very happy. That’s what we all do. We avoid the things we aren’t so great at, and often have little interest in, and focus on what does interest us and where our talents lie. If we were lucky we also had parents who encouraged, supported and cheered us on in pursuing those interests.
Why should any of this be different for our Autistic children? I don’t want Emma to try to be someone she isn’t. I want Emma to be the very best Emma that she can be. Which means I need to support her interests and help her find the best way to communicate. Verbal language is tough for her, typing seems to help her access a part of her mind, that verbal language cannot, so we are doing all we can to support her typing. How she communicates is not as important as that she be able to. She loves to perform and sing loudly, so we have a variety of microphones and an amp that she can use to hone her singing skills. She loves her books, so in between reading her favorite Miss Spider book, I am teaching her about arachnids, what they eat, how long they live, how many legs they have and how they spin webs. Spiders are actually kind of fascinating. Even though Emma loves the Miss Spider books because one of them includes an electrical storm (lesson plan coming on that topic soon!) and Miss Spider has a great many big emotions, which Emma likes to act out, complete with wringing her hands and pretend tears and cries of anguish, there are a great many topics I can piggy back on, to teach her about things like – the weather, electrical storms, any and all big emotions, pretend and real, etc.
I want to encourage her to explore all of these things and more. Last night she wanted to watch a really bad movie that she’d seen her brother Nic watching about a two-headed shark who attacks a group of teenagers. And despite my misgivings about the content (and just awful quality of the movie in general… The acting is phenomenally bad, the shark is the best thing in the movie) it was age appropriate and I figured I could turn it off if it got too gory and awful. There was a great deal of emoting and blood curdling screams, which Emma thought hilarious. She kept saying, “Watch out, the shark is going to come and eat you! Oh no! He’s going to bite your arm off!” Then she pretended to bite me. Bad movie, great time was had by all AND I now have another lesson plan I intend to create regarding sharks!
Be the very best YOU, you can be. Now that’s the kind of acceptance I can get behind!
Posted in Autism, Autism "Awareness", Autism Acceptance
Tagged acceptance, Autism, Autism "Awareness", autism acceptance, Parenting
When my daughter was diagnosed first with PDD-NOS and later with autism, I easily fell into the ~ I-completely-love-and-accept-my-daughter-but-I-do-not-accept-her-autism ~ mindset. At the time, this seemed perfectly logical and I didn’t think a great deal more about it. Autism was the “problem” after all, not her, and once we got rid of the autism, everything else would fall into place. When people said the word “acceptance” and “autism” in the same sentence I nodded my head yes, while my mind carefully separated autism from my daughter, plucked the word from the sentence and placed it into a box before closing the lid.
It took a very long time for me to understand that my daughter and autism were not to be separated. And it wasn’t until I began developing real friendships with Autistic adults that I stopped trying or wanting to separate the two. Acceptance is much more than tolerating something or saying – okay I won’t actively fight this any longer. Acceptance is an embrace, it’s understanding and actively celebrating difference, it’s about looking inward and asking questions. It’s about self-reflection and digging deep into the darkness of preconceived beliefs and being willing to be wrong. It’s about saying – I don’t know and I don’t understand, will you help me? It’s about being vulnerable and not “right” and it’s about the excitement of discovery and being curious and open to different ways of being and seeing the world. To me, it is the most exciting way to live life.
To say I’m grateful to all those people in my life whose neurology falls under the Autistic label, would be a vast understatement.
Today at 4PM eastern time, Brenda Rothman of Mama Be Good, Melody Latimer of AS Parenting and I will be speaking about Parenting Toward Acceptance. The webinar can be found at the following link – http://www.icdl.com.
In other news, I was more than a little surprised to see this – Top 10 Social HealthMakers
Posted in Autism, Autism Acceptance, presume competence
Tagged acceptance, Autism, autism spectrum, presume competence, sharecare.com, Webinar
When Em turned two, I said, “I’d give a limb to have her ask for something.”
When Em was three, I said, “If only she could tell me what was wrong.”
When Em was four, I said, “If only she was able to understand.”
When Em was five, I said, “If only she would sleep through the night.”
When Em was six, I said, “If only she would learn to use the bathroom during the night too.”
When Em was seven, I said, “If only I understood what she was thinking.”
When Em was eight, I said, “I just want her to be safe.”
When Em was nine, I said, “I want her to have choices in her life.”
When Em was ten, I said, “I think I’m beginning to understand.”
When Em turned eleven, I said, “Thank you. Just thank you.”
Things continue to change. We adjust. I continue to change and my life gets bigger and fuller. Em continues to change and her life gets bigger and fuller. I didn’t fully appreciate or understand this when Em was first diagnosed, but I do now.
Everything changes. I’m learning to embrace it.
Posted in Autism, Parenting, special needs
Tagged acceptance, Autism, change, diagnosis, Parenting
Most of you have probably read Jim Sinclair’s famous essay Don’t Mourn For Us. If you haven’t, do. In the Loud Hands: Autistic People, Speaking Anthology a version of that essay comes after Julia Bascom’s wonderful Foreword. By the way, if you didn’t see the Huffington Post interview I did with Julia regarding the anthology and future projects, you can read that by clicking ‘here‘ and I’ve also embedded a link so those of you who haven’t read the Anthology can buy it and read, because.. well this book needs to be read by every person on this earth AND it’s now available in paperback as well as on Kindle, so who can resist? Here’s the “link” (again) to buy it. Full disclosure – I bought this book for a number of my family members and gave it as a Christmas gift!
I read the anthology as a PDF file first, then I read it again in paperback and now I’m rereading it with my highlighter in hand. There is not a single essay that has not been streaked with neon green highlighter. The anthology has contributions from a wide range of people (a few of my favorite writers are missing, but I am hoping this anthology will be followed with a second that will include writing from E. of The Third Glance (not to be confused with “E.” who is in the current anthology), Aspie Kid, Michael Scott Monje Jr and Sparrow Rose Jones to name just a few.) It’s not the type of book you can really quote from as each piece needs to be read in its entirety to get the full weight and power of it.
Having said that, I have to quote Jim Sinclair and hope that all of you will get the book and read it from cover to cover. Jim wrote, “The ways we relate are different. Push for the things your expectations tell you are normal, and you’ll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined.” “… you’ll find a world you could never have imagined.” This has been my experience, exactly. I think I’ve even said something close to this before. I believe I’ve said finding Autistic voices and reading their words was like being presented with proof that another universe exists, but that I never knew about. So for all of you who need or want proof that another universe, a more wondrous and fantastic universe than is imaginable, read the Anthology and be prepared to have your world changed in the best possible way!
One of Emma’s favorite Imax movies is about the Hubble Space Craft found to have a faulty lens and requires repair. Once fixed, it produces absolutely hallucinogenic images of the universe that are so beautiful it is hard to believe they are real. To me, autism is like those images, beyond anything I could have imagined.
Images taken from Hubble Space Craft
Posted in Autism, Autistic Role Models, neurodiversity
Tagged acceptance, advocacy, Autism, Hubble Space Craft, human rights, imax, Jim Sinclair, Neurodiversity
No, this post has nothing to do with porn, soft, hard or anything in between. In fact, this post is not about sex at all. There will not be any numbers or shades or subtle, implied meanings of anything remotely titillating. For those who were hoping otherwise, best to move along…
However, I do have a confession to make. I tend toward extreme thinking. An example, if someone cuts me off while I’m waiting for the subway, grabbing the one remaining, unoccupied seat, forcing me to stand, I can get into some pretty abysmal thinking. I am likely to assume the day is cursed, as I engage in heinous thinking about the person who “stole” MY seat, to apocalyptic views about the nature of human beings. I know this about myself. I know I have a difficult time living in the soft, greyness of life, while rejecting the glaring, yet far more exciting black and white tragedy or ecstasy of my circumstances.
For years I felt mildly victimized by Em’s diagnosis. I felt no one really understood or could possibly understand and any who suggested otherwise offended me. Then I found Autistic adults who were not living the tragedy I had assumed was my daughter’s inevitable future. In fact, these adults were interesting, smart, some spoke, some did not, others spoke on occasion, some communicated through typing, others communicated through typing with a facilitator, some had careers, others didn’t, some were in relationships, others weren’t, some had children, others did not. Some have become friends, one in particular has become a close friend, someone I seek out, think about, want to spend time with, look forward to talking to and miss when our schedules do not allow us to connect. In knowing her I’ve been able to dispense with the “victimized” mindset. She’s helped me enormously, not just in giving me a better, more tempered view of autism and breaking down some of the more harmful stereotypes and beliefs I once held about autism and Autistic people, but in what it means to be human.
I have gone from feeling a low-grade sense of sorrow for my circumstances to feeling fortunate and grateful for my life and family. I don’t mean that everything is perfection and that we never encounter moments of sadness or unhappiness, I just mean that I no longer pin my dark moods and feelings on “autism”. In fact, I feel ridiculously fortunate. I have met more fascinating people in the past year than I ever imagined possible. I no longer wonder what life would be like had I not had an autistic child. I am grateful for the life I have. I am grateful for both my children and I’m grateful for my friendships. I find I am living more and more often in that comfortable grey area of non-extremes. (Please feel free to remind me of this post when I write something less “evolved”.)
And that woman on the subway, who for the past four years has shot in front of me to grab the only remaining unoccupied seat on more mornings than I can count? I wish her well. I even gave up my seat, so she could sit this morning AND I didn’t feel smug or resentful; I just kept reading my email. Who knows? Tomorrow I may even muster up the courage to smile at her. Because you know what? Life is just too damn short. Besides I’m growing fond of the grey.
Christmas Eve Dinner – 2012
Posted in Autism, New York City, Parenting
Tagged acceptance, Autism, autism spectrum, gratitude, Human, Parenting
Emma's Hope Book 