Thursday, January 31, 2008

Journey of An Aspiring Allie, Part III

...continued from a couple days ago, this is the third part of an approximately five part series on a personal "journey." I am hoping that you will read these posts in order, starting with my January 27th post, part I. I am also hoping that you will view the videos in my posts as they are interjected in the text, before reading further, even if this means you take a few days to read one post. Because this post has many videos, I'll take a few days before posting again to allow folks to catch up if needed.

This series is called: "Journey of an Aspiring Allie." Enjoy!


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Subtitle: THE EXCAVATION





(photo taken by my son)




I think it would probably be helpful for me to pause for a moment and say that while I have been referring to "autism," what I am actually thinking of is a vast array of labels used to explain neurological diversity of many types.





I also would like to say that M. does not have an diagnosis of autism at this time. He may or may not be on the spectrum, he may or may not have other neurological challenges, and over time I've come to consider this something about which he has the right to privacy if he so chooses. So while I've been open to date about M.'s strengths and needs, I will no longer be speaking openly about diagnoses, birthfamily history, or so called "risk factors" or contributing circumstances. I regret speaking in the past more openly. I will, however-- like any parent-- continue to be open in sharing with folks about ways to connect with M.
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This post will be messy because it is an excavation.

I can't recall any point in time when my thinking about autism dramatically shifted. It is unclear to me how much of that is because I have always had a similar line of thinking, how much of that is because of lack of clarity in my memories, how much of that is the result of memories colored by current perceptions, and how much of that is the result of this being a very slow evolution.

I can, however, identify some random memories that indicate a spectrum of thoughts I've had over the last several years, and also moments that have impacted my thinking greatly:

Spectrum of Thoughts

  • Once upon a time, and this is extremely difficult to admit, I didn't think I had it in me to parent a child with a cognitive or neurological "disability." I can be impatient, and I am sooo intellectual. I worried I would snap at my child for not "keeping up with me" as I taught them about the world. I worried I would find it unfulfilling to parent a child who "wouldn't develop typically." I was really ignorant. I didn't put two and two together, that everyone is learning all the time. I didn't realize how fulfilling I would find it, including on an intellectual level, to find ways for my children and I to reach one another-- to really connect and learn TOGETHER-- in both "typical" and "atypical" ways. I didn't realize that I'd be the one having trouble keeping up with my kids as they teach me. And I didn't realize my heart's capacity. It was some time after I was thankfully stripped of my ignorance that I stumbled upon the following video, which so beautifully gave me a visual image to attach to what I want to be as a parent (autistic father and son): http://www.youtube.com/watch?v=trym2trONes

  • Non-sequentially, I have had very rare moments of wondering if I can connect with my son, and moments of feeling so wholly connected to M. that it is difficult to describe. The latter being my usual "state." I remember attending a workshop for parents of kids with special needs, and crying as we talked of tools of interaction that I felt would never be of use because M. at that time was bouncing off the walls and I felt I couldn't get his attention long enough to connect.

Moments of Impact

  • My relationship with M.'s birthparents and their parents have been significant as I've evolved. This video illustrates some of the things I've been learning: http://www.youtube.com/watch?v=qn70gPukdtY
  • I remember when my son was younger, going to a workshop on cranio-sacral therapy hosted by a local organization for parents of children with special needs. I overheard one parent complaining (in front of her autistic child) to another parent that "people just don't get how hard it is." She then explained how she sometimes "had" to lock her child "in a dark closet" for a while in order to "help" him "get under control." I was horrified by this abusive practice. I understand that children with autism may have some different needs in terms of parenting practice than children without autism, I don't think this is what is needed. http://www.youtube.com/watch?v=82hWuQalYkw is a long video. If you don't have time to watch the whole thing, I suggest watching 1:00-3:45 and then 12:40-18:38, or at least 1:00-3:45 and then 12:40 through whatever point you want to stop it. Or you can skip it. The point is that this father is meeting his son where his son is. With so called "neurotypical" children, this is considered good parenting. But somehow, with children who have autism, all that seems to get thrown out the window by too many people. Suddenly, the goal becomes to fight and control our children. I didn't "get it" then, and I certainly don't now.

  • One of the most significant shifts in my thinking came after I attended an introductory workshop of the HANDLE Institute http://www.handle.org/, at which point I began to see ALL behavior, my own and my kids' behavior, as communication. Related video: http://www.youtube.com/watch?v=f15JexiQt4U I listened on CD to the most amazing book of all time: The Fabric of Autism: Weaving the Threads Into a Cogent Theory by the founder of HANDLE, Judith Bluestone (a neuroscientist who herself has autism). I no longer had any shred of belief that my son had a deficit, or that I had a deficit as a mother. Judith normalized both of us.

  • One of the most freeing aspects of this evolution I've been experiencing is a reconciliation with my own past. Starting with my eldest foster son, I recognized aspects of myself that are hidden by learned social and cognitive accomodation and compensation. I have a lot of memories from my childhood in which my inclinations were atypical, particularly my social inclinations. I continue to struggle in many ways. The example I am willing to share here publically is my compulsion in organization. I am so compulsively organized that if I can't get something organized 100% perfectly, I often have to tune it out completely (aka let it fall into total disarray) in order to keep my mind from looping in a continuous relationship with that and only that. In other words, I get stuck on my compulsions unless I find a way to block them completely, which has consequences of its own. I've learned a lot of coping mechanisms in this regard, some quite healthy and good, and some that I have now been working to unlearn. I asked my dad some time back if he felt that as a child I was developmentally delayed in any way. He told me that no, "if anything" I had been "socially advanced." However, current patterns in my life do reflect memories from my childhood that otherwise may or may not be accurate, and I think I've just learned increasingly sophisticated manners of compensation. I don't consider myself a poster child for what it means to be "neurotypical," and this really is helpful for me in connecting with M. We "stim" together. I honor my own sensory issues by honoring his issues. I find myself having almost infinite patience with him to the extent as I can tap into the special needs I have. We try new things together. http://www.youtube.com/watch?v=R6WwetWc5Q8

Phew! Always still more to say, but I'll give you a chance to read and digest. And I'll take a break from dealing with fragments and return to a more wholistic look in a couple of days. Talk with you more soon!

Posted by Masasa at 2:27 AM
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