Tag Archives: early intervention

Separation Anxiety

Posted on March 21, 2014 by | 57 comments

In our ongoing “spring cleaning” (which never seems to end) I came upon a large spiral notebook filled with notes from the dozen or so ABA therapists who came to our home beginning in November, 2004 through August, 2005.  Emma was just two years old when all of this began.  It’s a fascinating document of that time period and it depresses me to no end.  Over and over the notations remark upon Emma’s “clingy-ness to Mom”, her “whimpering” and “despondency” when I would leave the room and her internal discomfort.

It is impossible for me to read the notes and not see an obvious pattern.  For a therapy that prides itself in collecting data, it is curious that this larger and, what seemed to me anyway, obvious pattern was largely ignored or, perhaps it is what naturally happens when we pathologize a neurology.  Emma’s desire to seek comfort and assurance from me, her mom, was seen as a negative, something to be trained away, something that was getting in the way of more important things.  It is ironic that this was being said about a young child who was diagnosed with autism, which has, according to all those experts, as one of its most defining characteristics, “social impairment” and an inability to form close bonds.

A two-year old not wanting to go off with a stranger is considered a “good” thing by most people.  That this same child would prefer being with their mother, even after getting to know someone else, would still, in most instances, be thought of as an excellent example of bonding and having a close relationship with one of the most important people in that person’s life – their mother.  After all, if you cannot trust your mother to protect you, to be there for you when you are two, how will you learn to trust anyone later in life?

Richard and I talk about “what we would have done” all the time.  Not as in – what would we have done if we could do it all over again – as much as, what would we do now if we had a two-year old today who was just like Emma.  And the first thing, the absolute first thing would have been PRESUME COMPETENCE.  That is the key, the foundation by which everything else would have been gauged.  This does not mean expecting a two-year old to understand, know and behave as a twenty year old.  It means we would have presumed she understood and felt what a two-year old is capable of understanding and feeling not less.

When Emma began her ABA based preschool in the fall of 2005, I was told to drop her off and immediately leave.  Yet when my non autistic son went to preschool they had a three-week “transition period’ in place where parents routinely stayed with their child, slowly reducing the time they stayed until eventually the child separated from their parent when they felt comfortable to do so.  Each child was different.  Some children ran off within the first few days, others needed more time, some needed several weeks, but no one said, “Leave now, even though your child is hysterically crying and clinging to your leg, it will be good for them.”  I remember asking about this at Emma’s preschool and being told they didn’t allow parents to stay with their child as this only prolonged the child’s suffering.  How is it that one method is good for one child, but not another?

Knowing how sensitive my daughter is and was, knowing how intensely painful this must have been for her, I can only sit here, filled with sadness that we just didn’t know better.  It was as though, when we got her diagnosis, all common sense left us.

So I am asking all my Autistic friends – What would have helped you when you were a small child?  Would it have been helpful to have your parent stay with you until you were comfortable and felt safe enough to go off on your own?  Would you have liked knowing your parent was there, even if you didn’t need to be right next to them?  What do you advise parents new to all of this?

OT session ~ 2005

OT session ~ 2005

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What We Would Have Done Differently

Posted on February 27, 2014 by | 40 comments

What We Would Have Done Differently Had We Known What We Know Now is the longer version of the above title for this post.

Someone left a comment on a post I wrote about a year and a half ago – Want to Know About Autism?  Ask An Autistic.  In the comment they asked a number of questions and because they are questions others have also asked, I’m writing a post devoted solely to answering them.

“What would you have done with Emma if you had not fought your seven year war? How would you have spent that time with her knowing what you know now? What do you think would have been of most benefit to Emma when she was still too young to type? How would you have gone about learning assuming competence?”

“What would you have done with Emma if you had not fought your seven year war?”

The “seven-year war” they are referring to is one I describe in that post detailing all the things I did upon receiving my daughter’s diagnosis.  To contemplate what we would have done differently had we known what we know now is both exhilarating and painful, but I’m going to give it my best shot…

The short answer is – we would have done everything differently.  The longer answer is vast, so vast I don’t know that I can do it justice in just a few paragraphs, but I will try…

Once we were given her diagnosis I would not have done any of the therapies suggested other than occupational therapy.  I know this will strike many as radical, even negligent, but I am speaking very specifically about my daughter.  Right from the beginning, knowing what I know now, would have changed all of my thinking, reactions and response to my daughter.  All those years spent trying to “help” her were years marked by fear, distress and worry.

I know now how sensitive Emma is to other people’s emotions, how she picks up on all of that easily and how distressing it can be for her.  So there are things I would have done that actually have nothing to do with Emma, but that would have helped me be a better parent to her.  Reducing my fear and constant worry would have been helpful to all of us.  In order to do that I would have had to ignore pretty much everything I was being told about autism and what that meant for my child.  The information we were given in 2004, the year Emma was diagnosed, was presented as fact.  And, as it turns out, it was incorrect.  I cannot think of a single thing we were told that did not prove later to be wrong.  Think about that for a second…  Every single thing we were told was incorrect.  Everything.  (Richard, correct me if I’m mistaken about this.)

A quick aside –  this is where, the way our society is structured has done none of us any favors.  If we lived in a truly inclusive society where autism was not denigrated, but was considered just another neurology, no better or worse than non-autistic neurology, where there was no judgement placed on either neurology, but more was treated as fact, where everyone came into contact with both neurologies on any given day in a variety of settings, “autism” would not be viewed with the fear and worry and even terror that it currently is.  When I say “inclusive” I am using that word literally and not code for “tolerating” or “understanding” or even “accepting.”  I mean a society where all neurologies are treated equal, without comparison of one, which is thought to be superior, to another considered inferior.  An inclusive society would mean “accommodations” would be embedded into our daily lives seamlessly and without fanfare, just as the many accommodations non-autistic people enjoy without even noticing them, do.

I would not have sought out the advice of the slew of doctors and specialists we carted her off to.  I would have surrounded her with music, singing, dancing, lots and lots of movement, gymnastics, swimming, trampolines, trapeze, art, literature, poetry (much of this we actually did do.)  Had Soma begun her center at the time of Emma’s diagnosis, I would have begun learning RPM and implemented Soma‘s suggestions for very young children right away.   Beginning with isolating the index finger to point independently and moving on to presenting written choices, for everything and anything – “do you want some M-I-L-K or do you prefer J-U-I-C-E?”  Writing each letter, while saying the letters out loud as I did so.  Encouraging her to point to the two choices I wrote.

There were many things, looking back, that we did right, things we did for both our children, such as getting her on skis when she was just three years old, horseback riding, lots of hiking, carrying her in a back pack, Emma loved being carried in a Kelty pack so she was able to view the world at the same height as me.  We took the children to the theatre, puppet shows, kids concerts, and traveled on airplanes when they were both babies.  I began brushing their teeth the minute that first tooth came in, I cannot tell you how grateful I am that I did that.  I began flossing their teeth the instant a neighboring tooth appeared.  I read to the children and provided both of them with lots and lots of books.  We exposed our children to art and literature; these are all things I would not have changed.

“How would you have gone about learning assuming competence?”

Presuming competence is ongoing.  It’s a practice, a mind set and it requires a leap of faith.  Or at least this is how I have come to view it.  Presuming competence is less about an idea and more about doing.  It’s an action, one I must be constantly mindful of and vigilant about doing moment to moment.  My past thinking is so ingrained, changing that thinking is something I must work hard at all the time.  First I must become aware that I have ingrained thinking that is not presuming in my child’s competence, second, I must accept that my ingrained thinking is unhelpful and hurts my child, and third slowly, slowly work to do, and  think about, things differently.

I’ve written about presuming competence ‘here‘, ‘here‘, ‘here‘ and ‘here,’ but I will just add that this is very much something I continually struggle to do better.  To peel back the layers and layers of misinformation and assumptions that get in the way of being completely present in a way that is nonjudgmental and most helpful to my daughter so that she can flourish is not easy, but it is the single best thing I have strived to do.  It requires actively ignoring the more common thinking about autism and what that neurology means.  It means actively questioning everything I am told by people who present themselves as experts.  It means listening, really listening to my daughter.  It means sitting with the discomfort that I have done so much of this wrong.  It means forgiving myself for my mistakes.  This is the path I find myself on at present.

And truthfully it is Emma who is leading the way, my job is to follow, listen, learn and cheer her on.

Emma ~ January 29th, 2014

Emma ~ January 29th, 2014

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Early Intervention

Posted on July 8, 2013 by | 32 comments

Last week I wrote a post,  Autism “Experts” about how I used to attribute any action or sentence uttered by my daughter as evidence that whatever therapy or treatment we were employing at the time was “working.”  It was my way of staving off the persistent fear that if we were not intimately involved in a constant barrage of therapies, she would make no progress or whatever progress she made would be less, than if we devoted every waking hour to constant involvement and interaction.  Suddenly every waking moment became a moment we must engage, interact, teach and push for more.

We were told about the human brain and the small window when the brain’s plasticity is at its most optimal for learning.  From the moment that diagnosis was handed to us, we felt we were in a race against time.  Any time we sat down to read the newspaper or took ten minutes in our daughter’s presence to relax and just be in each other’s company without “working” with her was reason for guilt and the feeling that time was slipping away from us.  The nagging worry, if only we did more than we already were, she would be better served, is one I remember well and can still feel the residual stress of.

I want to clarify a couple of things that perhaps were not entirely clear in last week’s post.  I do not believe an autism diagnosis means we sit and do nothing to help our children, but I believe there must be a balance.  What we did was detrimental to all involved and I do not encourage anyone to follow in our footsteps.  All our hard work, the round the clock therapy, (more than 40 hours a week) the training, the evenings and weekends spent taking over once the therapists had gone home, did not ensure our child’s brain was rewired.  She was not mainstreamed within a few years.

This idea, popularized by the book, Let me Hear Your Voice by Catherine Maurice was NOT our story.  I do NOT recommend that book, in fact I urge parents to avoid it.  It was the first one recommended to me by Emma’s ABA supervisor and it set us on a very painful road of discouragement and disappointment, but perhaps even more importantly and destructive, it put into play the belief that Emma’s neurology could and should be “fixed.” And it pushed us further away from any degree of acceptance and eventually embracing and yes, celebrating our daughter for the amazing, uniquely beautiful being that she is.

That early intervention is so often equated with ABA is worrisome to me.  I hope this is changing.  People suggest it is, but when my daughter was diagnosed it was a given.  It was ABA or nothing.  Agencies offered versions of ABA, but it was still ABA.  My child was not helped by ABA.  I would not have done it could I do it all over again.  I’ve written about ABA before ‘here‘ and ‘here‘.  I know many of you feel it has helped your child, many have written to me and described some version of ABA that bears no resemblance to the method used with my daughter.   Evidently ABA has, in some cases, changed.  The bottom line is this – Does it presume competence?  Does it respect the child as a human being?   Is this a method I would use on a child who was not Autistic?

What I would have done when my daughter was first diagnosed was OT.  I would have enrolled her in gymnastics, trapeze school, swimming and I would have introduced her to a stencil board and AAC (Augmentative and Alternative Communication) devices.  I would have begun using Proloquo2go and many of the terrific Grasshopper apps had we had iPads when Emma was diagnosed.  And I would have begun working with Soma Mukhopadhyay.  In an ideal world all of these things would be a given.  All of these things would fall under “early intervention.”  All of these things would be available to ALL families despite their level of income.  These are the things that have proven to help my daughter.  All children may not respond to the things she has responded to.  But in an ideal world “services” would include an evaluation determining what things would help and a plan would be made.

In last week’s post I questioned those who are not Autistic and have little or no contact outside of a professional setting to those who are and yet call themselves “experts.”  I was not referring to the many professionals who are intimately involved in the autism community (and by that I mean the community of people who are Autistic) who have dedicated themselves to helping our kids and us so that we can be, not only the best parents we can be, but also equipped with information that will help us help our children flourish.  There are a great many of you out there, and to you I am incredibly grateful.  To all those professionals in the field of autism who are not familiar with Autistic blogs, books or do not have have any Autistic people in your life who are friends and colleagues, please become familiar with Autistic people’s work so you can tell parents.  Many parent’s first contact with anyone involved with autism, outside of their child, will be a therapist.

Please make sure parents know there is a growing population of adults who share our child’s neurology.  Even if that means just giving us a list of blogs and books written by Autistic people.  Ideally there would be programs in place that employed Autistic people, just as social workers, therapists, parent liaisons are employed. Autistic people who are interested in interacting with new parents and their newly diagnosed children would become a part of “Early Intervention.”

Ideally we would live in a society where we did not segregate those who were more profoundly affected by physical impairments and do not speak, so that all of us came into daily contact with those whose neurology was similar to our child’s as well as those with an array of impairments.  Perhaps families with older kids who are farther along in the process would volunteer to reach out and be available to other families new to all of this.   The point is that we could help each other more than is being currently done.

No family should feel they are alone, or feel the fear we felt or the terror and worry that dogged us every waking moment of those first years after my daughter’s diagnosis.  Years we spent in a state of almost constant panic that we should be doing more, that if we didn’t we were losing time, that our daughter’s life depended on it and that anything less meant we were failing her.

No one, who is given a diagnosis of autism, should feel they are alone.  None should feel less than or believe they are damaged or broken.  No child should feel ostracized or that the way they process and view the world is “wrong” or “bad.”  None should feel that because they are Autistic, they need to hide or feel abandoned by society. No one should be made to feel ashamed for the way they were born.  No one.  This is what I want to see change.  This is why I keep writing.  All of us can work together to create a world that embraces one another and encourages, rather than condemns.  Each of us can play a small part in making this happen, by increasing our awareness, by accepting difference, by working together.

**Em

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Autism “Experts”

Posted on July 5, 2013 by | 57 comments

Yesterday Emma asked Richard a question.  It was a question she’d never asked before.  It was a question that made us both inwardly gasp and later discuss at length.  It was one of those things that was noteworthy and made us both rejoice.  It was an example of progress, not just Emma’s, but as I’ll explain, our’s too.  Emma’s reaction to Richard crying out when our impish kitty, Merlin leapt onto his back, was what one might expect, except it wasn’t.  As all four paws, claws extended made contact with Richard’s flesh, Richard howled out in considerable pain.  Emma ran into our bedroom and asked, “What happened Daddy?”

Had we been in the midst of some “therapy” or “treatment” protocol, as we almost always were a few years back, we would have attributed this new, never-before-heard question to that therapy or treatment.  We would have felt a wave of euphoria, believing, even if only briefly, that this new treatment or therapy could be credited for her voicing such a question.  We would have remarked to each other that this was proof and only later, perhaps the following day or day after that, we might have questioned our conclusions.  We might have discussed any other significant thing that might have occurred or we might have waited with guarded excitement for the “next” wonderful thing that would prove to us, once and for all, without a doubt that this thing we were doing was making a difference.  As though our daughter would otherwise stagnate without our constant tinkering.  As though she would not make any “progress” without our various interventions.  As though autism meant complete stagnation and no movement of any kind.

Since we no longer adhere to this line of thinking, we simply spoke of what we’d just witnessed with joy, while shaking our heads at how fabulous it was that we are making progress along side our wonderful daughter.  And as we mutually applauded ourselves for the headway we’ve made, we attributed all of it, her question and our reaction, to what it was – life, maturity, learning, growth and the fact that we humans have a tendency to change and progress and how wonderful is that?!

No one told us this seemingly obvious fact when Em was first diagnosed.  No one told us this, probably because no one thought it necessary to.  Except that in my case anyway, it was necessary.  It was more than necessary.  It was required.  Because with all the misinformation we received upon Emma’s diagnosis, one of the implications was that massive amounts of intervention, forced interaction and jumping through a million hoops was more than necessary, it was required if we wanted to see any “progress.”  It was suggested that if we didn’t do all these things, we might as well resign ourselves to the idea that our child would never move beyond where she currently was.

“I can’t stress strongly enough the importance of diving into action immediately. Every expert in the field agrees that early intervention is essential and critical. The “wait and see” approach is detrimental to your child.” ~  Lynn Koegel and Claire LaZebnik

It should be noted, “Every expert” who is NOT Autistic, may believe this, though I’d argue with the word “every.”  It wasn’t until I began reading blogs written by Autistic people and talking with my Autistic friends, that I started to seriously question this idea.  I also began questioning the whole idea of what “progress” really meant, but that will have to be tackled in another post.  It wasn’t until I began questioning the idea, that I then began also questioning who exactly were these people calling themselves “experts” and how none of them were Autistic, nor did they seem particularly interested in hearing what Autistic people were saying.  Do any of you find it curious that so many of these so-called “experts” do not seem to personally know any Autistic people outside of a clinical setting?  The very people they say they are experts on?  Don’t you find that odd?

Can you imagine if a number of men claimed to be “experts” of women and what it is to be female, but none actually knew any women outside of their professional setting?  Can you imagine that when women spoke up or suggested these views were in direct contrast to what they, as women, lived on a daily basis, these male “experts” ignored them or suggested they couldn’t possibly know what they were talking about because women couldn’t be relied upon to make sense of such things?  Perhaps even suggesting that women tended toward hysteria and being overly emotional? Can you imagine laws being enacted that directly affected women’s lives and their bodies, with a complete disregard for how women felt about such laws?  Any of this sound vaguely familiar?

“What happened, Daddy?”

Em dressed as a pink poodle ~ 2007

Em- poodle

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Walk Toward the Light

Posted on June 19, 2013 by | 24 comments

First there was the evaluation.  The therapists, the psychologist, the questions. Everyone arrived with their little bag of toys that remained untouched by session’s end.  Some tried to interact, others just observed, but all, eventually, turned to us to ask pointed questions.  Questions meant to gather information, but that felt like tiny daggers, cloaked in kindness, laced with concern.  They jotted down things we could not see, little bits of information they would, no doubt, refer to later, once back in the safety of their office.

Meanwhile we were in the midst of it, with our child who behaved in ways we couldn’t anticipate and often did not understand.  None helped us with that. Their reports finished, their conclusions made, their notes and jottings summarized into a single word – autism.  Delivered to us by phone, we were told, like a psychic delivering a premonition, the cold, hard “truth”.  Our daughter’s life, suddenly bled of joy, like so many leeches placed on a feverish body, draining her of all vibrancy.  Her bright future no longer bright, she was categorized.   Her deficits itemized and highlighted, her strengths dismissed or ignored, the solution, the remedy, the therapeutic interventions, the “behavior modification” programs could now begin.  If we were lucky she could be trained.  She could be “modified”.  She was young, we were reassured.  There was still time.  We were congratulated for having caught “it” so early.  Early intervention was key, we were told.  Intervention…

That was the beginning.  That was the beginning.  Instead of reassurances, we were given dire statistics, useless advice, asides about inner strength, courage, even “god” was evoked with alarming frequency.  People learned of our news. Carried along on the same wave of terror, they tried their best to conceal what they really thought.  Some were more successful than others.  Some, couldn’t help themselves, in an ill-conceived attempt to prop up, they said things like, “I don’t think I’m strong enough to have such a child…” or “I wouldn’t be able to handle it if…” or simply “How do you do it?”  and with each, the darkness crept closer, enveloping us in arms of sadness and pity.  The darkness became familiar, soon, without realizing it, I had embraced it and found others who felt similarly.

What I would have given to have had my Autistic friends there with me during that period when everything was so scary and the unknown loomed before us like a dark  impenetrable wall.  What I would have given, for someone to say, “You are frightened now, but they do not know, they do not understand, they may mean well, but they cannot help you.   You see, they are coming at all of this from the perspective of their own limited neurology.  They cannot see beyond what they believe to be true.  But there is another “truth” and it is one they are unable to tell.  The words they use will only lead you down a path you must reject.  It is a path that will descend into more fear, more terror.  It will not lead you and your child to anywhere you want to go.  Come with me, instead.  Walk with me.  Walk toward the light.

In my ever evolving fantasy of – What if? – I imagine all my friends… my friends who are Autistic, some of whom do not speak, some who do, some have similar interests as my daughter, others do not, but all… all share her neurology… and it is towards them that I walk.  It is with them that I surround myself.  It is with them that I choose to be among, because they know.  They know what it is to be Autistic.  They put beauty in the word “autism”.  It is their faces, their words that I think of when I think about autism and my fear is vanquished.  Fear, now replaced with pride and hope and joy that my daughter is part of such a caring, loving group of people; I am relieved.   A community who has come together to care for each other in a world that continues to ostracize, segregate and criticize, this is the community that stands with their arms open wide, in acceptance, in celebration of all that my daughter is and will become.

Walk with me… walk toward the light…

Rainbow Clouds

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