Tag Archives: isolation

I Will Not Model Compliance For My Child

“Look! Motorcycle bubbles!”  This was a phrase Emma used to say often.  It was an all-encompassing phrase that was both a metaphor for rain and the Fourth of July and New Years Eve fireworks, as well as a descriptive phrase of what both are like sensorily for her. (Emma has verified this is true.)  “Motorcycle bubbles” meant rain and fireworks, but there was so much more to those two words than simply pointing out the window and saying, “Look!  It’s raining!”  or “Look at the fireworks!”

When I went back through this blog to find the post I’d written about motorcycle bubbles, I found these, “Sorry Bubbles” and Em & The 4-Wheeler  written more than two years ago, that I’d completely forgotten about.  “Motorcycle bubbles” and her related phrase, “Sorry bubbles” are nothing short of poetic.  Poetry is all about using words in unusual, unexpected ways, “Sorry bubbles”  Great art evokes an emotional response within us.  While, a few years ago, I was appreciative of the beauty of phrases such as “sorry bubbles”, I was even aware of the emotional tug I felt when I heard her say those words, that appreciation was tempered by worry and concern about what I believed the larger issues were for my child who said such fascinating, yet cryptic, words.

I no longer feel the strain of worry and concern, but rather delight in my daughter’s obvious brilliance and poetic gifts.   I am grateful to have gotten to this place of appreciation and joy.  So many autism specialists and so-called treatments did not and do not appreciate the beauty of those word combinations.  So many believed they were aberrant, meaningless words that must be righted through rote learning and repetition of more “appropriate” words.  Which was code for “use these conventional words, so that we can understand you more easily.   Make our lives easier.  Behave in ways that do not draw attention to you.  Be like everyone else.”  And all of this was done under the guise of “helping”.  Meanwhile “motorcycle bubbles” and the like would be bulldozed, covered with the dirt of more conventional language.

People argue that our children need to learn to “fit in” that it is our job to teach them these skills and to not do so is to be negligent or (at the very least) unrealistic about life and the world.  But for those like my daughter, asking her to spend so much of her energy and time to try to change the way she moves (were that even in the realm of possibilities), forcing her to give up her string (which marks her as different), trying to get her to substitute her string for a more “socially acceptable” object, teaching her to swallow her verbal utterances that to others seem nonsensical, forcing her, every time she said anything, to repeat a more conventional way of speaking, even if all of this were remotely possible, I ask WHY?

Why would we do this?  Why is all of that more important than giving her the freedom, support and encouragement to be her unique and beautiful self?  Why is quelling her natural tendencies so desirable?  Why is tamping down her poetic phrases, replacing them with more standard, “accepted” speech preferable?  Why is all of this considered desirable given the massive toll all of that takes on her?  Even if she could do any of these things, even if all of it were obtainable goals, how exhausting, how bone-numbingly frightening, how terrifyingly isolating it would be to grow up believing that everything about you was fundamentally wrong.

I’m not interested in grooming my child to be something she is not, demanding that she be someone, that even if it were possible for her to attempt, would make her feel awful about herself, just so society could feel better about its own mediocrity.  I’m not willing to do that.  The only thing I care about, the only thing I’m interested in, is changing society’s views and the only way that’s going to happen is by countering what is considered the “norm” and saying, NO!  I’m not going along with it.  NO!  I am not going to raise my child to be compliant or train her to say what you want to hear or try to force her to move in ways that society has deemed acceptable.  I will not model compliance for my child to imitate.  I do not condone censorship that would bury “motorcycle bubbles” and “sorry bubbles” forever.

(Chou Chou – This photo’s for you!)
Love copy

We Are in This Together

It is in our best interest to remember that we are all the same.” ~ Barb Rentenbach in her book, I Might Be You.

One of the most insidious and destructive messages parents are given about their Autistic child is “the list.”  I am referring to that list of deficits we are given.  The list that enumerates all the reasons why our child has earned the “autism” diagnosis.   It is a list that divides.  It sets us a part from our child.  It makes us question our maternal instincts.  It makes us wonder what we did wrong.  It is the list that becomes our to-do list.  A list of things we now set out to “fix”.  Or so this was my experience when my daughter, Emma was first diagnosed.

That list, filled with judgment, a critique of my not-yet-three-year-old child, the same child that just moments before, I knew was different from what I expected, different than my son, yet still was a part of, was now branded with “other”.  If we are going to make such lists, I think it only fair the “evaluator” and all members of the human race be given similar critiques.  I would be curious to see how each of us stands up under such scrutiny.  Let us be evaluated by someone who does not share our particular neurology.  Let us each be judged by another – another who deems themselves superior.  Let’s see how well that plays out.

Loneliness is the most predominant side effect of our unique design. Many times, autistics revert to isolation by default rather than preference. It is infinitely easier to back away and not try to be included instead of oafishly stepping in and attempting to convey you intend to be a part.” ~ Barb Rentenbach in I Might Be You.

Have you ever felt like a fraud?  Have you ever said something to someone only to realize you said the wrong thing?  Have you ever been in a social situation and left, wondering why you feel uneasy, upset or just sad?  Have you ever spent time in the presence of a group, yet felt lonelier than had you been alone?  Have you ever had the thought that if people really knew you, they wouldn’t like what they found?  Have you ever felt separate from, less than, not good enough?  Have you ever felt critical of the way you look, the shape of your body, the size of a particular body part and wished it were different?  Have you ever thought if only that part was smaller, larger, different, if only the number on the scale was less, if only your hair was lighter, darker, straight, curly, your skin was a different shade, your height…  Have you ever thought if only X was different, I wouldn’t feel this way?

Remember a time, no matter how brief, when you felt that magical euphoria of connecting with another human being?  That moment when you felt the wonder and bliss that only comes with friendship and love, the beauty of connecting with another?  Remember what that felt like?  Wasn’t it beautiful?  Wasn’t it unlike anything you’ve ever felt?  A kind of anything-is-possible feeling?  A feeling of all being right with the world, that joy of knowing we belong.  Who among us has not experienced both?  Who among us has not felt the horror of feeling separate from, the worry that we are somehow damaged, not right?  Who among us has not felt the inextricable sadness that comes from feeling we are all alone?  Now add an entire society, a whole group of people, all of whom have decided we are “less than”.  Feel what that feels like.

Go back to the memory of bliss, of joy, of connection.  Feel the vibrancy, the exuberance that comes with that.  Which do you choose?  Would any choose differently?  We are all served by remembering we are more alike than not.

Reach out and connect with those who may be struggling with separation. It takes just one person to care to change a life for the positive. Be that for someone.” ~ Barb Rentenbach in I Might Be You.

Emma, Barb & Lois the week we recorded the audiobook of I Might Be You

Em, Barb & Lois

Emma’s State of Bliss

It was this state, this blissfulness in Emma that caused us tremendous existential concern.  When Emma was first diagnosed she was two, just three months shy of her third birthday.  She was an exceedingly happy, though quiet and increasingly isolated child.  If left alone, she was content to putter around, seemingly unaware of dangers, which led her to cross the street without looking, wander into a raging surf at the beach, go off by herself never looking back to see if anyone knew or was following, etc.  When one of us tried to interact with her, she immediately made us aware of her displeasure – we were rejected, pushed away.  Emma was happiest in the company of herself.  It was this state of apparent blissfulness, we realized, we would have to break through in order to have any hope of connecting with our daughter.

Parents often describe their child diagnosed with autism as “slipping away” from them, the bizarre sense that their child “was disappearing” or “fading.”  These are the words we use to describe the inexplicable distance and disconnect we feel from a child who appears not to need nor want anything from us or the world.   These words cannot adequately describe the inexpressible grief, the feelings of impotence that inevitably arise from parenting such a child.  The bizarreness of Emma’s “autism” is beyond description.  Our decision to break into Emma’s state of bliss was not without land mines.  We were aware that the world we wished her to enter (ours) was both a selfish desire on our part, but also selfless, in that if we didn’t, it seemed likely she would only sink deeper into a world of her own making, isolated, alone and silent, making it impossible for her to survive.

I am reminded of the poem by John Donne – “No man is an island entire of itself; every man is a piece of the continent, a part of the main…”  That she was unaware of this, seemingly incapable of grasping what this meant was something we knew we would have to teach her.  It is something we continue to work on.

Emma’s sixth birthday

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

The Isolation of Autism

Much has been said about the isolation accompanying autism.  Because of the problems autistic children have in communicating, isolation is often an issue.   Even those who are verbal, often have problems with repetitive language, are unable to engage in “small talk” or cannot move fluidly from one topic to another, thus separating them from their peers.  We are not able to discuss with Emma how she feels about not having a group of friends she hangs out with.  She isn’t able to tell us what it’s like for her to live in our world.  These are conversations we hope to engage in with her one day, but at present, they are not something we can have.  The best I can do is imagine and speculate what it must be like for her.

However there is another isolation I can speak of and that is the isolation felt by the parents of an autistic child.  It is a feeling Richard and I have grown accustomed to.  It comes with the territory.  Most of the time it doesn’t bother me, but every now and again, when something happens which makes me feel particularly sad, I have no one other than my husband whom I feel I can turn to.  (I am fortunate to have that, as many people do not.)  Soon after we received Emma’s diagnosis, Richard formed a support group.  There were anywhere from 12 to 5 of us who met once a month.  Richard was hit harder with the sense of isolation than I was, because as a man, it was much more difficult for him to find other men who were willing to sit through the discomfort of seeing their friend upset, knowing there was nothing they could do to fix it.  Women have an easier time with that, it seems.  In any case, Richard formed a support group, where he was almost always the only man.  We met for a few years and then people fell away over time because of work demands or they moved out of the city and eventually the whole thing dissolved.

Emma’s school has a monthly parent group.  I attended it a few times years ago, but it was moderated by a well meaning and no doubt, extremely capable young women, who did not have an autistic child or any children for that matter, and I felt very much an outsider, not a great feeling to have in a support group and so I stopped attending.  Over the years I have come to rely on a group of women with whom I meet once a month.  We’ve been meeting for going on six years now, incredibly, and they have been there for me since the beginning.  I am incredibly grateful to this group of women, but even so, there are days, like today when I do not feel I can call even one of them.

Sometimes, not often, but every now and again, I am overwhelmed with what I can only describe as grief.  Grief that Emma has not progressed more, that anything resembling a main stream school is out of the question for her, grief that she is not able to carry on a conversation that a two year old is capable of having.   Suck it up, I tell myself.  There is always someone out there who has it worse.  Do something for someone else.  Pick up the phone and call someone who is struggling.  Ask them if you can help.  So I do.  These small, tried and true actions are all I know to pull myself up and out. It’s not that any of these things will change anything, it’s that by doing these things, by reaching out to help someone else, I am changing my own despair, even for a few minutes.  There’s a whole world out there of suffering.  Sometimes helping someone else, is the best I can do.