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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Sunday, January 08, 2006

 

Raindrops from God

Just when I am at my lower points, I receive raindrops from God. (Not even sure I believe in God, or fate, per se, but then moments like this make me wonder...).

Adam's stims have been way up these days. When I say that I mean that he flicks his hands in front of his eyes in a frenzy, he constantly babbles and talks to himself, as if leaving a silence would be torture, or he licks a window, a wall, a toy. It is then so hard to get his attention. My otherwise intelligent young boy who I've seen do so many things, here and there and all too inconsistently. He gives me flashes of his brilliance some days (like reading headlines of books -- like the headings in encyclopedias or reads the names of planets), just plain normal interactions on other days. Yet on other days I need to constantly repeat myself, use chips to have him sit down so I can teach him a skill, or he seems to forget how to read the simplest words I've seen him spell with his magnadoodle. Skills come and go and the fear is always if he still has the skill he once so brilliantly displayed. I believe that everything in his brain is stored and as more linkages are made and concepts fuse, his skills will become more consistent.

Stims give me the most fear because he is then at his most unreachable. They are like hurricanes -- much stronger than I am. There is little use fighting them and I want to respect the need and the reason behind them. Donna Williams writes a lot about the senses in Exposure Anxiety: An Exploration of Self Protection Responses in the Autism Spectrum and Beyond. The doctor I will be working with, who has her BCBA as well as a Ph.D. in Sensory Integration, suggests I delegate a visual box 6 times a day for 10 minutes at a stretch. It is a behavioural approach and I deeply wonder if this will help Adam -- I still want to honour his way of seeing the world while building bridges so he can interact with me and others. But when Adam isn't listening, I find myself at odds with my own principles. I am afraid if an appoach will harm him and dishonour him in an effort to "normalize" his behaviour. This is the paradox of autism. It is a skill that is there one day, gone the next. It is a parent's optimism and days of utter gloom. It is a battle within one's self to do what is right for one's child -- honour them and their difference -- while balancing a need to have them join us. Schools hardly help us with this paradox -- they only seem to make the conflict worse.

So, when I am at this low point today (my husband is gone for almost the entire week and then gone again this weekend with his other children skiing while I stay home with Adam who is getting sick -- his stims always get worse as he gets sick), Adam's lead therapist brings the book Autism and the Myth of the Person Alone by Douglas Bilken. He is the co-producer of the CNN documentary Autism is a World. Everything he says supports my philosophies of acceptance and integration. It is again an affirmation that in my hours filled with doubt, there is someone out there who does think the same way. Here are a few paragraphs from a chapter "Framing Autism:"

...building understandings from autobiographical narratives may prove challenging precisely because it requires a shift in perspective from the so-called normal body to other bodies, and from enforcing narrowly defined, dominant ideas of normal to embracing difference as normative. In general, the distinction of disability is fundamentally connected to the notion that there is a normal body. The person with the nondisabled body runs in a particular way, eats with utensils in a particular way, crosses the street, builds objects, dances, and speaks in sentences. The person classified as autistic, who might not do some of these things or who might do them in clearly different ways from the so-called norm, is in the position of being seen as awkward or inadequate, or even as an `individual failure.' Thompson (an autistic person), puts it this way:

`So powerful is the cultural imperative to structure experience with absolute categroies that figures who seemingly defy classification-- such as mulattos, freaks, transvestites, bisexuals, and other hybrids -- elicit anxiety, hostility or pity and are always rigorously policed. The rigidity of social order testifies to the destablizing threat of amiguity.'

The policing of people classified as autistic may include, for example, desires to `cure' autism, forced segregation of people labeled autistic in special schooling and housing and insistence that the person perform within completely normate standards, rather than in ways that reflect how autism is experienced. The idea of being policed runs through the autobiographical accounts. Fortunately, the contributing authors also explain how they often resist regulation." pp. 71-2.


I even have disagreements about respecting autism with my very own husband, who loves Adam with all his heart. His doubts work overtime as well -- the lull of chelation therapy, diets, gurus and ABA all too strong. Family members who do not spend as much time as I do with Adam, find it difficult to embrace his differences and struggle to make him more "normal." I worry about my tendencies to do this as well, as I get different inputs from various doctors and therapists. They can leave you feeling dizzy at the end of the day. To find one with the level of empathy and respect that I wish to achieve with my son without the endless worry that seems to parallel it, is still slightly beyond arms-reach. I still have years of living with autism and I want to understand how Adam thinks so badly. But I can't reach this level of understanding without acknowledging the things out there that try to pull us away from our goal -- of accepting, understanding, loving and helping our son. At the end of the day, Henry and I are both there for Adam and we love him to the end of the earth.

I've had parents who have read my blog, sending me information on diets I've tried with no success, or promoting ABA programs which I do to some degree, but with other therapies as well. Their suggestion is always that Adam would "do better with ABA." This is an example of all the things that pull on a parent in this arena every single day. When Adam begins to stim more, it is easy to think that something else would work better. It is harder to trust ourselves.

I believe a parent has to have eyes and ears open, acknowledge self-doubt and listen to oneself with as much knowledge in hand as possible. The expert on the child is the parent. Each autistic child can benefit from different teaching strategies and those strategies may change over time depending on the child's need.

I would also never advocate a therapy that is in direct contradiction to autism -- against the best interest of autism and the child who is autistic. Any strategy for autism must honour the autism as part of the child, not attempt to conquer, heal or cure it. To do so is to consider autism, and then your own child, the enemy. And I believe a child can feel that.

1 Comments:

Anonymous Shawn said...

Estee,

This is a touchingly candid description of the self doubts we all face. For me the 'litmus test' of any strategy is simply: "Is it nurturing?" As long as we're doing that, we're on the right path and it sounds like you are.

Shawn

10:42 PM  

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