Sad

I just opened an email newsletter from the HANDLE institute to learn that its founder, Judith Bluestone, died this February. Our family experience with HANDLE was tremendously powerful, and Judith's book The Fabric of Autism: Weaving the Threads Into a Cogent Theory (which I personally prefer in audio format) remains on my all-time favorites list.

What sad news!

On a totally different note, here is another blog I neglected to put on my list. This is a mom I know from "elsewhere on the internet." She blogs periodically. Please note that she has music on her blog, so you'll want to turn down your speakers if you are at work or have a sleeping babe next to your speaker or anything like that ;-). http://adventureswithboandboo.blogspot.com/

(Added link to original post 3-10-09)

Because I am Perseverative About Neurodivergence

What a lovely young man:



And some more food for thought that has been on my mind lately:

The Stimming House

This picture might also be worth 1000 words:

So we have been in our new house for a little less than a week, and we are still mostly packed up in boxes. I think this is going to go much more slowly than I had been hoping. I just want to be in and settled.

But what is that behind those boxes that are sitting on our 3-season porch? Why...a pool! You just can't see it because I took this picture at night.

For our first couple days here, I didn't have much opportunity to get in the pool. G. and the kids were able to make it in once or twice, but I just couldn't seem to get the timing down. Finally, during the last three days, I've been able to fit in some time in the water each day.

K. has always really loved the water, and M. has been a bit more cautious. We have been on hiatus for a while now from our parent-child swim classes, in part because M. hated the coolness of the water. It is really nice now to have some control over the temperature.

What is interesting is that K. now seems a bit more insecure when we get into the water (it could just be the insecurity of moving coming into play), and also she is not tolerating the temp of the water quite as well. She wants to be in the pool with us, but seems very tentative once in. I am hoping once things settle, she too will settle into the house and life with a pool so she can enjoy herself in the water again.

M. on the other hand, in just these few days, has begun to relax tremendously and enjoy water again. He napped later than usual today, so G. took K. up to bed tonight at the usual time but M. stayed downstairs with me for a little extra time.

I asked M. if he wanted to go dip his feet in the pool, and he said that he did. We went out, and were dipping our feet, and not more than five minutes later, M. decided to go ahead and basically step down into the pool...in his clothes and all. He played very contentedly even as it began to rain. I let him stay in the pool because there were no signs of lightning, but I made him come inside the house once the rain started to come down more heavily.

This child who once seemed to have a mild sensory aversion to pools is now the last to get out of the pool. A transformation largely in this single week of daily swims. We are so lucky to have a pool in our backyard for no-pressure family swims. It beats parent-child weekly lessons hands-down. M. has been able to come into comfort with the water in his own way and in his own time this week. He even is comfortable enough now to let me just lightly support him with a couple of fingers while he tries some basic swimming moves (leg kicks, and basic arm paddling, which is still very rudimentary).

The pool is a great place for "stimming" activities: for rocking, for slow spinning, for kicking and splashing, for bouncing/jumping, for making patterns with the water. We all do these things naturally in bodies of water, especially children. But M. and I both love that it is a built in feature of this house.

We also set up the computer yesterday, and I was playing some music off my mom's blog. M and I were tilting our heads back, looking at the ceiling, and swaying from side to side as we listened to it (along with bouncing and dancing too). The ceiling in the sunroom is a drop ceiling...a nice one, though, as drop ceilings go. The squares are soothing to look at when swaying. Very stimmy, and very soothing, and very bonding.

M's been enjoying some floor space in the living room to work on his new 24-piece puzzle (the pieces are quite large, and the puzzle is something like 2.5 x 3 feet when completed). He can do that puzzle again and again and again with complete focus as long as K. is busy doing something else. Yesterday, he lined up all his matchbox cars across the sunroom and then pronounced proudly to me, "Did it, mama!" Yes, baby, you did!

Even though our lives are still very much in upheaval here, our new home feels so right and good. And very stimmy-friendly. Hooray!

Determining The Title of My Memoir

First of all, happy birthday to me! Well it is the day after my birthday, but I stayed up late to start this post, and now I am going to finish it.

Given that it is my birthday, sort of, it's a good day for the following.

STRANGE CHILD (ME)

September tagged me, and as my mom said, "it's a cool one - not too time-consuming," and I will add that it is as silly or as serious as you want it to be.

1. Write the title to your own memoir using 6 words.
2. Post it on your blog.
3. Link to the person that tagged you.
4. Tag five more blogs.

Okay, so in my high school journalism class, I was demoted from writing titles because I've never been good at them. This was harder for me than it ought to have been.

But I still had some fun with it.

Here are some titles I thought of...

• First, I had trouble with the six word thing. My early attempts included some word fudging. One of my favorites from that stage was Make a List, Graph It, Forgetaboutit! If you don't count "a" as a word, that helps. Anyway, anyone who knows me well knows I am a serious list maker, and that I graph and plan and scheme in a most serious manner, but 80% of the time I forget the project I've taken ever so seriously soon enough because I've moved on to the next one.
  
  
• Then I took this task more seriously for a bit, and thought of titles that represent the "core me." "They" say every preacher has one good sermon in them. It's possible I may have written mine, and that now everything is a variation. If I make it into a six word title, it is something like: Love Lived Freely, Fear Through Thee. Okay, actually, the sermon part may apply best to the first three words. And I am not sure if the title even makes sense now, the way I broke it down into six words. But basically, the idea is that the fundamental core of my life has been my attempt to live a life centered in LOVE, even when that has meant living (charging) through huge fears. I decided that if G. had her way, she would probably vote to transform the above title into something more like: Chaos...Love...Chaos: Fear Love Not, which probably reads even less smoothly than the one above, but is likely a more accurate description of the way I live my life. That is...dive in because love is the strongest value, live in the chaos that happens when love determines your course (think: our experiences as foster moms), then repeat! But fear not, for love is worthy. Along those same lines, I thought of Chaos, Love, Fear...Chaos, Love, Fear. I liked that one because I could imagine a series of chapters with each of those words as titles, repeating themselves over again as needed ("Chaos Part I," "Love Part I," "Fear Part I," "Chaos Part II"...you get the point). I think I could easily write about my life in this manner, but it really under-emphasizes love, which I believe to be the stronger and most important theme.
  
  
• That made me think of one I liked even better, but that may have involved more than six words depending on how you count them, and that sounded a bit unoriginal: She Was Called & So It Was. Still, that's a pretty good synopsis of my life, and the development of my family and vocation. The last or first words of the book would have to be "and it was good," from scripture.
  
  
• Similarly, I tried to summarize my life is six words, and PHEW! That's pretty much impossible. The best I could come up with was It’s Good, Just Not That Simple, but I didn't like that title. It sounded negative.
  
  
• Never Fully Understanding, Never Fully Understood were words I used when posting a comment on another blog. And I guess I do feel like my life does have that thread in it (especially the "never fully understanding..." must nod here to my own constant state of confusion LOL). But that probably is overly simplistic and would come off as negative even when I don't mean it to be so (oh, yes, because I will never be fully understood ha ha ha), and truly, my life IS good.
  
  
• So then I started thinking more about my personal characteristics. It reminded me of Snow White and the Seven Dwarfs. I couldn't remember all their names, but I could think of lots of good title words that could pass as their names even if they weren't really. Ones I came up with included: Sleepy, Grumpy, Happy, Dopey, Mopey, Sneezy. I also liked this one because it lended itself well to chapter titles, and I could easily shape my life to fit within these chapters. Sneezy would have to be a medical chapter, by the way, which could be very interesting. That said, only one chapter for "happy?" Hmmm. Had to move on.
  
  
• Thinking of my personal characteristics also immediately brought this one out: Her Obituary Was Written and Updated. Or I guess since it isn't a biography but rather a memoir, perhaps it should be My Obituary Was Written and Updated. G. will laugh at this one. She knows it's true. I've written my obituary. I have fill in the blank spots she can use for updates (add children or whatever), but it is otherwise done. And I go back every now and then to update it. What I still have to do, and plan on doing, is put together most of my memorial service. G. calls this morbid. For me, it has nothing to do with death really. It is absolutely 100% an expression of my love for her, a deep desire to take care of her, and my way of honoring what I know will be among the harder things for her if I die before her (G. does not enjoy writing, and she especially abhors articulating emotion in public). I think this title says something about the core of who I am and how I think. It also gets straight to the heart of my life because my family is the absolute most important thing in the world to me and the center of my universe in almost every way, shape, and form. After thinking up that title, I got it in my head that I could expand that concept for more flexibility in chapters. And here, I ended up fudging with the word limit again: She Wrote It Because She Lovesya. Alright, alright. It wasn't that good, so I'll go back to the word limit.
  
  
• In a moment of self-doubt I wrote a title I would never use, mainly because it is inaccurate, but I liked it anyway because it is reflective of some aspect of my inner life: Sturdy Girl Outside, Fragile Girl Inside.
  
  
• Poking fun of myself further, but also capturing some of my nature, I thought of: I Hate Change; Let’s Change It. It really needs seven words though. It would read much better as I Hate Change, but Let's Change It. The idea is that I have an ongoing love-hate relationship with change. G. will be the first to tell you that as soon as the dust settles, and I start to get comfortable, I feel the need to stir things up again...to change something. G. is always talking about when things in our lives settle down. The whole notion of "settling down" has become some mystical creature always around the corner. She has been talking about it for the ten years we've been together, and truly, especially since our move to the west coast, our lives are characterized by living in stirred dust. I have to take responsibility for that. I am always taking on projects (starting a charter school among my most recent desires for a potential project, for example), and changing big things (having babies, and so forth). I don't like being idle. At work, too. I often come off as unafraid, daring, willing to take risks, interested in big vision and the future. And yeah, that is largely how I am. However, on a huge level, I also hate change. I am the last to agree to a change in the rearrangement of furniture in my home. I often cry when traditions are altered in the slightest. I prefer to eat the same things for months on end (hmmm...more neurodivergence I suspect). I am cranky, irritable, and generally uncomfortable when things in my environment or the dynamics of my relationships change. Yep, it is love-hate for sure. What a nut!
  
  
• One of the more obscure titles I thought of was: It’s Late Or Never: I Choose… does that even read? The concept was alright, but it didn't translate well to six words. The idea was something along the lines of my slow movement through life, and the choices I have made often involving either "never" or "late." Clearly, however, if one can't describe the concept in a clear fashion, one isn't going to write a book on it, so I guess that one is out. Oh well, it was a very limited depiction of my life anyway.
  
  
• That said, the last one mentioned got me on a roll with the often eccentric, neurodivergent, unusual, funky, and slightly off-center relationship between my internal and the external world. One of the first titles I thought of along those lines was this: Isn’t That the Name, Villa Waffers? My parents and siblings will know immediately what I am talking about. I might have been eight years old, if memory serves, and my family was on a picnic. On our picnic table was a box of Vanilla Wafers. I'd eaten them before and was perfectly familiar with their name, but when I asked for them to be passed to me, I read the name off the box rather than recalling the name. Despite good reading skills, I misread the box. "Pass the Villa Waffers, please" I said. Now that I am on anti-seizure meds, I am starting to realize how this seemingly benign childhood event is a piece of a puzzle in a lifelong pattern. I am now coming to understand that this is a big part of "my story." Why was I unable to rely on memory recall to ask for the Vanilla Wafers? Even if I read the box, why hadn't I caught the difference between my memory of the name and what I was (mis)reading? The answer may in fact be a part of funky neurological wiring rather than just a silly childhood "moment" (sort of like the cliche, "senior moment"). But thankfully, the incident was met with good cheer and generally friendly, compassionate humor rather than mocking. My parents' home has long been nicknamed "Villa Waffers," and we still sometimes use this nickname in addressing correspondence.
  
  
• Thinking in those terms, I was able to come up with several rather highly apropos titles including: No, That Never Occurred To Me; Brilliance Wrapped Up in a Box; I’m Sure I Never Said That; and Glimpses of Brilliance Muted and Lost.

This led to my all time favorite so far. Here we go.......................

Perseveration, Stimming, Deep Pressure, Heavy Work

That would be it in a nutshell. I'd have a chapter with each word as its title, and I would divide up my life's story accordingly. This would be EASY. Each is a therapeutic term describing either neurodivergent behaviors or therapeutic techniques to address neurodivergent needs. People often do the therapeutic techniques naturally if their neurological systems need them, but if you ever go to Occupational Therapy or Speech Therapy, you might just be taught how to use the techniques in a more intentional way.

Anyway, I like the way it captures my life so well, and also captures my distinct interest (obssession...perseveration??) regarding all things medical/neurological in nature.

From My Brother's Wedding

My brother was married today. For him and his wife, I wish blessings and love and growth and joy...and all the best of marriage.

My brother asked just before the wedding if K. might bring up the rings. I told him-- and I think wisely-- there was a near certainty that this would go haywire, but that with M., there was a good chance he could pull it off without too much craziness.

I did not overestimate my son.

(apologies for my funky camera issues)

Though he had trouble being a guest of the wedding, sitting quietly and attentively (he still did pretty well, I think, for an extremely active barely-three year old), he was a good ring-bearer. He took his job VERY seriously. He had the rings in his pockets, which he dutifully did not touch until I sent him up to the front of the room to hand them over. When he arrived at his destination, he dug in his pockets-- undistracted by the patient, loving laughter-- until he located each ring, one at a time, and gave them to S. and H.

It was so sweet to see him complete his job with success. And I know he felt like a meaningful part of things because of that moment.

G. and I were talking the other day about how many people before they know M. well underestimate his capabilities. I am sure this is largely a function of his communication delays. He also has such a different neurological approach to life, and his overall processing of information can be sporadic and unique in nature. But let it be known that I think M. is brilliant. In so many ways. He really is.

M. pays attention to everything. It is not obvious at all, but he watches and listens and catches everything going on around him. He has an incredible memory. Even several months before he turned three, he recounted to us events that had occurred a half year earlier. When he is focused, he has a very mechanical, problem-solving mind. He has a most excellent spatial sense, especially considering the challenges he has with his vestibular system, muscle tone, sensory processing, and motor planning. Way to go kid, and congratulations S. and H.

Anxiety

Let me be a little vulnerable here.

I've had a lifelong relationship with slightly-higher-anxiety-than-the-average-bear. Bear in mind, I am going to put a spotlight on that here, so please don't take this as a truly objective or wholistic perspective. I cannot be objective, nor does the spotlight allow for a wholistic perspective.

In my second year at university, I finally had my first no-doubt-this-is-what-is-going-on-here panic attack. I experienced it as something rather debilitating, and it has taken a lot of work on my part not to live in that space perpetually.

It's been interesting to observe myself during this cross-country move, to watch how I've responded to the inevitable anxieties of such major change.

I'm realizing now that my anxiety is somewhat cyclical in nature. When under stress of most types, I will go through periods of feeling clear and being able to respond to my anxiety without getting swept in. These are productive periods, happy times, and periods when I am able to empower others effectively while maintaining a healthy sense of boundaries. I am able to take a compliment, and generally process negative and positive feedback in the healthiest way I can (though I tend to do best with small, informal doses at one time, dispensed in loving, gentle, and personal formats). I go into "planning" mode. I am decisive. I am able to see my own vision-- for anything I'm working on-- and map out a way to get there. I communicate lovingly and effectively overall. I am in touch with my "better self."

Then, something will happen, and the anxiety will sweep over me again. All stress feels too much to bear. I cry and am irritable. I feel unclear. I can map out a way to get somewhere, but I feel doubtful about where I am headed and the steps feel so shaky that I can't tell if I am on the right footpath. I become frightened of my own inadequacies, and I can't thus empower others because it is too scary to give up control. And yet, I am too paralyzed by my own fears to do anything. I procrastinate. Negative feedback, even in loving, gentle, small, and personal doses, throws me off kilter. I can't find my footing. I lose my voice. I become out of step with my community.

On the outside, I can sometimes go through an anxious phase and even manage to maintain some semblance of normalcy. But as soon as I am "caught," I feel trapped and even more afraid. I don't like being vulnerable like that, so I push others away. I am ungracious, unforgiving, defensive, and restless.

I resort to coping skills that serve me in some ways, diminish me in others. I use my sense of humor. I put off my biggest tasks and do only very small bits. I sleep. I vent to my wife. I avoid human contact.

Again, I've worked a lot on this over the years. I go to therapy weekly. I attend to my prayer life, to the extent that I can manage at this time. I have taken herbal supplements like Saint Johns Wort and also used Rescue Remedy as a homeopathic treatment. I've taken courses in meditation, and I practice little skills when I don't have time or energy for something more intensive.

I am most conscious that I need to be careful to role model healthy rather than unhealthy coping skills to my children, that I need to be careful that they aren't exposed to the full extent of my anxiety, and that sometimes I just need to "get over" something and do it (like actually talk to a server at a restaurant rather than having my wife do it because I am feeling socially anxious) so that I am more comfortable and so are those folks around me (especially the kids).

But because of the immensity of change in my life this year, I find that just as soon as I start to catch my breath, something pushes me back under water and I can't quite find the strength to pull myself out as easily as years when I've had a little less going on (hah! when was that?).

I am learning, through this experience, those things that help me find success:

Internal

• My prayer practice. If I can't attend to my prayer life in full, I ought to at least find time to do a very small amount each day.
• Recognizing that most folks struggle with their own perceived inadequacies, anxieties, and so forth. That is, normalizing my challenges rather than using them as further tools for my own isolation. This also helps me in the sense of ministering to others.
• God. My therapist told me a little while back that when I get into "what if" thinking, I should have a word that I can use to finish that sentence to help me keep out of my own spiral of anxious thoughts. So now when I hear myself starting to say, "what if," and getting catastrophic in my thoughts, I say "what if God?" It instantly helps to soothe me. **Note: I've never shared this with anyone before, so you can imagine what a private practice it is for me. Not sure I would take too kindly to someone else trying to say it for me LOL.
• Empowering others and being gracious, even when I don't feel like I can. I've found that this can start another type of spiral. A much more positive, healthy one.
• Being clear about ownership. I own my power, and my therapist has helped me understand that my cycle of anxiety involves a point (usually very early on) when I decide to let others define my worth, the worth of what I do, and the power of my contributions. I inevitably not only give away my power, but I also choose to "hear" only the negative, only those non-affirming things. Even when I am arguing against them in my mind, they eat away at me because I don't own anything positive. And so ultimately, I am not just giving my power to others, but also giving my power to those things that don't affirm my worth. I do this because it is familiar-- it's a long-time pattern of thought for me-- and what is familiar is always less scary than what is unfamiliar. When I do this, I get so scared. I am not able to affirm other folks in their goodness or in their power. How can I possibly affirm goodness and power in others when I can't even find it in myself? I find it really helpful to own in myself a sense of competence and worth, and then to use that sense of self-worth to help light the candles of others (remember that when one candle lights another, it does not diminish that first light). When I do this, and I feel others reaching out to me in diminishing ways, I can set my self apart from that behavior, often without setting myself apart from the person.
• Assuming competence. Placing trust in my self, my intuition, and the value of my contributions is critical. When I am in a place of self-trust, I don't need to worry. I know that one way or another, a wave can rush over me without pulling me under. I can trust that I know where I am headed. I can trust my own instinct and tools to get me there. AND, even better, I find myself assuming that about others too. I can let the birds fly without trying to control where they are going and how they get there.

External

• A mentor. I am considering paying to see a spiritual guide. I know those unfamiliar with such a practice will wonder why one might get paid for it. But like therapy, I think it can compliment my other work. I realize now that I had a spiritual guide (of the kind I didn't pay)-- someone who had the skills I am learning to develop-- back in my old state, but I don't here. A mentor would help me in life's constant discernment that I feel is critical to growing in healthy ways, both personally and professionally.
• Compliments. The other day my assistant told me I was "one of the highlights" of her year. As I debate about whether regularly praising my kids will slow their development of internal rather than external motivation, I am realizing how much I benefit myself from praise. Because I am prone to anxiety, and I easily get into distorted internal thinking, it helps to have benchmarks...affirmations...that help restore me to clearer thinking and yank me out of my distorted internal dialogue.
• Recognition of my best self. I am realizing how much I benefit from living in an environment where others see the self that I am not always able to see, and are able to help me hold that understanding constantly through all the trials and tribulations of the life's work I have taken on: my marriage, my vocational call, and my call to parent. I am really missing my friends and colleagues and all the folks at the foster care department back in my old state because this is exactly how they related to me. Some people are motivated by constant feedback, both positive and negative. That's how they learn. Because the negative becomes so amplified for me, I benefit more from the motivation of an understanding of how good I am. I benefit from regular reminders that accessing that self is not as hard as I work it up to be. One of the things that has sustained me through this trying and exhausting year was one of my last conversations with my former supervising minister. He, who had become a beloved friend and colleague, as much as a supervisor, looked me straight in the eyes and said "Just remember how good you are." I truly could not have made it this year if I couldn't hear those words in my head, affirming my best self. And I know he believed it because there was not a moment when I didn't feel that way with him, even in the handful of times he gave me directions or corrections or even constructive criticism (which he only gave when absolutely necessary...he knew that I was critical enough of my self for the both of us). And he spoke always highly of me among our shared and separate colleagues. I try to take this approach with those I supervise now. It is a basic part of learning theory that we learn best when we feel safe. I assume that we will all be growing in our lives and that we can grow best when others see the people we are becoming.
• Knowing where I stand. When my wife comes to me and affirms my place in our family, and then gives me some gentle, loving, constructive criticism, but is direct with me, I avoid the spiraling inventions in my head that grow out of my anxiousness. "Is she going to lose it someday and not be able to tolerate this any longer? What then?" "How long was this bothering her before she ever told me?" "Is this worse than it seems?" "Does this represent some greater ill in her perception of our marriage?" "Is this a bottom line thing for her?" "Does she feel like we can make it through this?" I was always the kid who physically felt like she had to vomit when called to the teacher's desk. In my mind, I was going to be caught in something awful I didn't even know I did. Tears would well up in my eyes before I even arrived at the desk. That's why for me, (1) spontaneous feedback helps-- because then I don't start cycling into the anxiety before I even have heard what needs to be said-- I don't cry my way to the desk, (2) gentle, loving feedback helps because I don't start questioning my place and worth as I am prone to do, and (3) direct feedback in small doses helps because it requires less interpretation and leaves less room for distorted thinking. Back when my former supervising minister and I began working together (and he knows this because I later shared it with him), his quiet-nature often brought out my anxiousness. He would be completely still and silent as I spoke, and I would start going a million miles a minute in my mind: "I wonder if he is mad. What if he didn't like what I just said. What if his silence is a sign of dismissal." etc. I quickly began to learn the way my internal dialogue was distorting reality to a point of paralyzing anxiety, and it was completely unnecessary because he had a great respect for me and my work.
• Contact with others. I am finding the more social contact I have with others, as much as it sometimes *gives* me anxiety to have it, ironically makes me less likely to get into my out-of-control, spiraling cycle of anxiety. I think moving into a more walker-friendly area of this city, and into more of a neighborhood will be *tremendously* beneficial to my mental health. Even my house-warming party I think will be helpful. Next year I am also going to keep tighter office hours with my assistant, so I can spend less time alone in my office. Additionally, I am going to try to spend more of my lunches at the staff lunch (folks generally eat at the dining table together at noon), since being on a different level of the building than all but my assistant contributes to my feelings of isolation and lack of coordination with others here.
• And beyond just contact with others, I do best in an environment of routine and activity. Nothing hugely fast paced (I am finding myself having a very hard time adjusting to the pace of the east coast...and even my wife, who grew up out here, is saying the same thing about herself), but for example, when I went to water aerobics twice a week with one of my wife's co-workers, it really did me a lot of good. I've got to find that sense in my new life here as much as possible because that is how I thrive.

I am finding that when I assume others have fairly similar needs, the quality of all my relationships, both personal and professsional, is deeper, more sustaining for everyone, more loving, more compassionate, more joyful, more powerful, and more healthy. And it makes me more effective in my ministry to boot. Interesting stuff.

My Assistant Came In!

...and everything is okay. Just thought you all should know. Phew! One more lesson in the degree of my social anxiety.

A Tribute to Artists and Reflections on my Childhood

Disclaimer in Advance: The following are my own impressions and memories, which of course are colored by the perspective of years and my own feelings. As other family members frequently find my various memories to be inaccurate, I am writing this as a tribute based on my impressions, which may or may not be particularly historically accurate.
---------------------------------------------

I grew up in a home filled with music of all kinds, and colors rich and deep, and words artfully arranged, and images of intrigue.

This is my mother, the brilliant artist and writer with a creative and powerful mind:
http://www.sarahfishburn.com/ (note if you are at work and want to wander onto her blog to turn down your speakers, as there is music, which you can control using a fixture on the right column of her blog.)

This is my father, the brilliant musician and engineer with a creative and powerful mind:
http://colin-quodlibet.blogspot.com/

If you scroll down the links to other blogs on my mother's blog, you can see the type of people with whom we associated as I was growing up. http://lisahoffman.typepad.com/ and the likes.


We moved around a bit, but my childhood home always included art everywhere, not just on the walls but on and in our cupboards, on top of shelves, on the floor, painted onto furniture...everywhere. For some period of time, if you were a friend visiting my home, and you decided to snoop around in our bathroom cabinets, you would be greeted with a line of those funny fat little plastic troll dolls, artfully arranged as entertainment for the "snooper," which I think my mother might assume we all are.

It also included lots and lots and lots of books, tucked all over the place but many of them on this huge bookshelf made from old barn doors or an old barn fence or something like that. I wonder, mom, if you have photos of that, so people can get an idea of what I am talking about?

Creativity and clarity of thought were values in my home of origin. As was a wonderful, complex intermingling of notions of both simplicity and the value of beautiful things.

We read constantly, and art was a part of our daily lives. We also played a lot. We hiked and camped and played wall-ball and four-square and basketball and frisbee and all sorts of things. My mother does not drive. My father does but hates it. We walk and rode our bikes a lot. I started riding the city bus at a young age. At first my mom was nervous about it, but then she considered my ability to use my cunning conversational skills to get through almost anything ;-).

I mostly would walk around talking to myself. For a while I had a collection of imaginary friends with funny names like "Bookie," and "Stampie," and my "best friend" who I called "Maradawn" (I have no idea how that would be spelled). After my imaginary friends began to fade away, I would talk myself through my imaginary games: I was the attorney, the teacher, the mom. Eventually my self-conversations began to just be fairly straight-forward conversations with myself, imaginary play loosely tossed in throughout. I was always processing! There was so much to take in, in my world.

My siblings still tease me about the ski pole. I used to take one of our ski poles and walk around the back yard at our duplex, jabbing it into the ground and talking away to no one but myself. The kinesthetic feeling of it striking the ground and then pushing it through the resistant soil helped me think. For a long time I have felt ashamed when my siblings would talk about the ski pole. Now I see that child self walking through the yard with it, and I feel so loving and understanding toward her. I am a little neurodivergent afterall, and that is what they call "heavy work" and "joint compressions" and "cognitive ordering through speech" now in my children's occupational, educational, and speech therapy. I am lucky that I had parents who let me do my thing. I was able to develop my cognitive abilities without unecessary impediments that result when one's neurological system is trying to regulate and order the world and is supressed in its natural efforts to do so.

My mind went constantly. It still does. It happens with all of the members of my family of origin including my older sisters, I am guessing, but I've noticed it is especially true in the case of my younger brother and me. When we shared a room, we would talk nonstop until we fell asleep. Deep conversations, I am sure, for people 5 and 7 years old or whatever.

My brother's mind seemed to work mostly in images and words. He was and is an amazing artist. Mine almost always worked in words. And also in feelings. Often thoughts would pass through me as feelings alone. For someone so verbal, so wordy, it is hard when you can't articulate a thought because it comes in a wordless form. But it would happen. It still does. Sometimes I start writing something, and I feel perfectly clear and the words are flowing right out of me, and then suddenly the thoughts come to me instead in waves of purely gut-level feelings, and I will only be able to scribble. If you were to look at a journal of mine, you would find pages filled with just scribbles. At the time I made them, these would be very clear thoughts. But totally nonverbal. Somewhere there is an abstract artist in me who is working through these images, though the images themselves are very unskilled, unpracticed, and completely child-like.

This might be a part I of a II part series. I have to post this before my laptop battery runs out because I don't know where the charger is right now (the red light is flashing-- ack!). I may or may not have more to say in this tribute at this time...we'll see tomorrow or sometime later this week.

Sometimes I Think I Am a Little Like This

http://www.nbc.com/Saturday_Night_Live/video/play.shtml?mea=237294

It's Worth It

This documentary is worth the time:

http://www.hbo.com/docs/programs/autism/video/

I am not sure how long the documentary will remain online. HBO said it would be available online on March 30th. I watched it on that day. As of today, it took some serious hunting to find it again. If you have HBO and can get it on demand, that'd probably be the way to go.

My only disclaimers: It's a documentary. It is interesting. I like the personal growth that is evident among the parents over time. I really liked "hearing" Neal's voice at the end. I am not advocating for any position or approach any person takes in this documentary at any particular time. Some things I could relate to, some I could not. Some approaches I felt were useful, some not.

But the video itself is thought-provoking and well worth viewing, and I encourage you to find some time to sit down and enjoy the show before it is unavailable online (or save it to your Netflix).



On a personal note, I am going in for my MRI on Wednesday. I have asked that I get my "commemorative CD" of the images on that same day. This was noted on my chart. I hope they do indeed give it to me on that day, and if so, I will post some images. I am THRILLED about the idea of having a map of my brain.

Lost Videos

So I discovered after my last post (which I wrote over several weeks before posting), that all videos by Christschool have been taken off You Tube by Christschool himself. I don't know what happened, but I know for a very long time that he has taken a lot of grief from You Tube users who hurl insults for entertainment.

In any case, I am so saddened by the loss of his videos, which were a major piece of my writings below. I do hope that you can perhaps get some idea of what the videos were about by the context of my posts. But after all the time I have put into this, I admit that this is a huge let down.

So sad.

The Last of My Autistic Allie Series...For Now

The following post is the final post for now from my series called "Journey of an Aspiring Allie." If you have just started reading, I hope you will go back and read the series in order. The first post of the series was on 1/27. The series is in the form of a guided video tour. It's just the way MY mind works.

I do also hope you will watch the videos exactly as posted in the text, as a break before reading further. I had attempted to learn to imbed videos in my posts but was unable to do so. Like recent posts in this series, this post contains a number of videos of varying lengths. I will wait a week or so to post again so that I can give folks time to get through all this.

I suspect that you may find it possible to get through this post only in parts, depending on how much time you have available to you at any given moment. __________________________________________________________
JOURNEY OF AN ASPIRING ALLIE, FINAL SERIES POST (FOR NOW)

So this is the deal:

This matters.

This post is about the difference that how we view and respond to neurological diversity makes.

There is a school in MA, the state where I am now living, that practices among other abuses, electric shock behavioral management on those children with "mental retardation," "autism," and other related "issues."

http://www.youtube.com/watch?v=HvLXwlr0S-U
http://www.youtube.com/watch?v=s9-xXfgQiTU

What types of behaviors are being managed in this fashion? The "worst of the worst?" If you don't have time to watch the whole video that follows, watch the first 2 minutes and fifty five seconds, so you get the context of what the video is talking about, and then the last part of the video, 8:20-9:59.

We're talking about electric shock for hand flapping, as an example. Yes, that is right. Shocking children when they flap their hands as they speak. The video clip at the end is directly from the school itself.
http://www.youtube.com/watch?v=ghheuvDQD2Q

Even non-autistic people occasionally flap their hands. Remember this video, featuring Bill Gates? http://www.youtube.com/watch?v=f15JexiQt4U Do we or do we not live in the 21st century?!


This is not an issue that can be isolated, however, to the abuses of just one school, an issue affecting a minority of children and individuals. This is a part of an ongoing but historic disregard for the humanity of individuals who do not conform to the "norm" and/or individuals with "disabilities."

The following is a video on the work of a man named Ivaar Lovaas. His story is one of a historical nature, but it continues to play out in our current times. Ivaar Lovaas pioneered an autism "treatment protocol," known as Applied Behavioral Analysis (ABA), that is still widely used and-- despite many controversies- very much considered "mainstream."
http://www.youtube.com/watch?v=SuohTq7zw0I

The breadth and scope of impact from this disregard for humanity can not be covered even in a series of posts. But what I can do is at least indicate the severity of the matter. This is where the pieces start to come together in a big way. Check out the following written tribute, largely highlighting DAN (Defeat Autism Now) from a magazine for which I have deep respect and for which I have even spent four or five years of my life volunteering. Note the connection between ABA and DAN: http://www.mothering.com/sections/news_bulletins/november2006.html.

I respectfully disagree with a great deal of the stuff written in that tribute.

On rare but significant occasion, children have died because of DAN-recommended treatment protocols (take chelation...a response to concerns that heavy metals in vaccines were causing autism). Children have been subjected to scientifically unsound or experimental and very stressful treatments (take, for example, medicinal regimens involving countless injected and oral supplements and medication...some children taking 40, 50, even 6o medications and supplements daily...along with all the side effects. Or, as another example, take hyperbaric oxygen chambers).

When I can stop crying long enough, I can sometimes laugh at the absurdity:
http://www.youtube.com/watch?v=XAlfXQTOBcg

After all this, one has to return to the question, just what is it we are trying to defeat, anyway? Far from a turn toward reason, this question leads straight to some of the most dark and frightening aspects of the entire conversation. The following video is a marketing tool for an organization called "Autism Speaks," which contrary to its name, is not the voice of autistics speaking out in any form (if you want to know why I say that, see: http://autisticbfh.blogspot.com/2008/01/autism-speaks-silences-autistic-child.html and http://autism.about.com/b/2007/06/07/autism-speaks-problems-grow.htm and http://www.autism-hub.co.uk/autism-speaks-dont-speak-for-me/index.php. Otherwise, proceed to the video posted below).

Last I heard, unlike the largest Down Syndrome organization in the United States, Autism Speaks (which is the largest autism organization in the United States), does not allow autistic adults to serve on its board or participate in its organization in any meaningful way other than to present to the outside world a negative view of their condition.
http://www.youtube.com/watch?v=FDMMwG7RrFQ

Now watch this. It is, at least, the voice of one autistic adult:
http://www.youtube.com/watch?v=bYo3UW0nwEA

And think about this (image...not a video): http://autistics.org/images/lotto-numbers.jpg

But worse, while this video is a powerful marketing tool for Autism Speaks, it is devastation rhetoric (to which young people as well as parents of newly diagnosed children are especially vulnerable). It contributes to the pervasive negative societal images of autistics. It contributes to those conditions in our culture that create bullying and other peer-to-peer abuse for autistics. And within days after it came out, at least one autistic child was killed by her mother, possibly after viewing the video.

Autism is not a "painful disease" as it is characterized in this film. It is a condition that makes some neurotypical folks uncomfortable, but it also represents another way of being in this world. It is wonderful there are so many diverse ways we can be present in our bodies and in our environments. What are we so afraid of? Handflapping? Seriously?!

I ask again, what is it we are trying to defeat?

Am I anti-cure? I don't know. But I do know that it matters how we view autism. It matters for all of us.

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.

• There came a time in M.'s life, when I began associating with parents of the right type. Four videos that demonstrate what I mean by the right type: (1) http://www.youtube.com/watch?v=VZeESthh2_E (2)http://www.youtube.com/watch?v=bYo3UW0nwEA (3) http://www.youtube.com/watch?v=xLjMs9NpEyY (4) http://www.youtube.com/watch?v=teFYiE0Xt9M

• 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!

Journey of An Aspiring Allie, Part II

...continued from yesterday, this is the second in a series of posts about a personal journey I have been on. The posts include a video tour. I hope you'll read posts in this series in order starting with yesterday's.

Motherhood meets us where we lack imagination.


In my case it met me in my own fears about the unknown of "the future," in my own need to control "outcomes" to feel safe, in the stories I was telling myself of scarcity...that the world is a place where we need to fight to make sure our needs are met.


From those first moments together in the special care nursery, M. has been the apple of my eye. I love him. I adore him, and the wholeness of who he is has almost seamlessly been incorporated into the very spirit of my being.

Each day, the creative, loving exchanges between myself and my son are the source of new imaginings. I am braver now, venturing into the future with a sense of optimism that perhaps only a parent of young children can have. Of course I worry like a parent of young children now too, I worry and fret and feel the weight of the world on my shoulders-- on one hand-- but on the other hand, I have found a new grace.

M. does not yet know that the rest of us, the adults in the world, have lost so much of our ability to imagine. He is not self-limiting. He can not be. He is still blessed with the infancy of being in which the greatest concentration of creativity lies.


This gift I have been given is but a precious and fleeting one, to glimpse the infinite, the ultimate. To feel GOD. I cannot explain this creative synergy, this most delicious spark, any other way.

And it is only in the form of a muted veil, periodically blown across my face-- especially when M. was younger and I was yet a newborn to this treasured space in my spirit-- that I worship the idols of limited imaginings, of futures defined by concepts of limited spiritual value. That I grieve, for example, possibilities of college or marriage as I have scripted them, fearful that because M. has this or that neurological challenge in his life, that he will somehow miss out on something I have deemed necessary for a "good life."

"Real idolatry in the Jewish and Christian tradition does not have to do with the worship of statues or pagan altars. Idolatry is rather the profoundly serious business of committing oneself, or betting one's life, on finite centers of value and power as the source of one's confirmation of worth and meaning, and as the guarantor of survival with quality." --James Fowler


M. has challenges and strengths. He is an active, engaged person, and an everyday two year old too. M.'s world is wide open, and without hesitation he is inviting me in.

In that spirit, I bring to you a second video. It was in one of those most vulnerable moments of falling out of grace, that I first saw this video. It was uncomfortable for me to watch (probably in part because of my own sensory issues that make the first 3.15 minutes or so hard for me, and probably in part because of how it rubs against the alignment of ultimate truth and the ways I have found myself disconnected from "God" by fear). Yet, I've found myself drawn back to watch it again and again, each time a little more captivated and a little more hopeful.

Video:

http://www.youtube.com/watch?v=JnylM1hI2jc&feature=related

Journey of an Aspiring Allie, Part I

The following is a link to a video, with which I will begin to share with you a personal journey I have taken over the last 33+ months.

I will share my journey by way of a video tour in a series of posts titled: "Journey of an Aspiring Allie." I hope you will watch the videos (one or more in each post over the next several days) exactly as posted in the text, as a break before reading further. I had attempted to learn to imbed videos in my posts but was unable to do so.

____________________________________
Video:
http://www.youtube.com/watch?v=QgH65hXp0Vk


The week my son M. was born, I had no idea that I was going to have a baby. At least, I had no idea what age child I was going to have and when.

My dw G. and I had been foster parents with a private, state-contracted therapeutic foster care agency. We had several life-changing, perspective-altering experiences as foster mothers, including the most significant of them all: parenting a teenager with a complicated life (over 2/3 of which had been lived in foster care) and a list of diagnoses a mile long. He had come to us, we were told, as a "permanent foster placement." We had not actually asked to be a permanent home for any child. In fact, we weren't even foster parents when we received the call about this boy. They hand selected us from the community (we had a connection with them through a person in the congregation I was serving, and we had been in touch with them at one point when we were considering getting foster licensed). They called us and asked us to get foster licensed specifically to parent this child. The agency did not do adoptions, but this child needed some kind of a "forever family."

It turned out the agency lied to us, and in a story deserving of its own series of posts, it turned out our dfs was not with us as a permanent placement afterall. Slightly less than a year after his arrival, he left. His exit from our life was devastating. We cried nonstop and swore we would never foster parent again. Being his mothers had changed us forever in ways that I can't possibly get into now without it requiring multiple posts of its own. But let's just say, among many other things, that we had our eyes opened in regard to "disabilities" and that we had a new sense of respect and compassion.

We stuck with that agency for six or seven months before we finally decided to transfer our license directly to the state due to what we felt were irreconcilable differences in philosophy between us and our agency's Director at that time. Shortly after, we decided to apply for an adoptive homestudy as well, so that we could provide permanency for a child if it was in the child's best interests.

It took us about nine months to get our new license and adoptive homestudy completed, and then we began our wait for a child to be placed with us. We accepted a couple of placements for children who ended up staying with their families rather than coming into care. Then we found out about a nine year old who needed a very temporary foster home, and we gladly took her in for the month that her mother could not care for her. Two weeks after she left, we received the call about M. He was just one and a half days old.

When I went to meet M. at the hospital, I knew virtually nothing about him. I knew he was a boy. I knew why his birthparents could not care for him. I knew he was having some difficulty eating and that he was very jaundiced and in the special care nursery. I knew his birth weight. This sounds like a lot to know, but in fact, this information was very watered down at that point. Though I asked many questions, the notes I had taken over the phone filled nothing more than a thirtieth of a letter-sized paper scrap. Still, by the time G. and I had said we were accepting the placement, I was more interested in racing to the hospital than in taking notes (G. had to finish her day at work, which was awful for her...having to wait to meet our baby).

I walked into the special care nursery and, standing by the door, my eyes scanned each bassinet where there were no parents, looking for a blue name card indicating that the child was a boy. I would not be able to pick out my baby by distinguishing family marks; resemblance to me; eye, skin, or hair color about which I had no information; or his resemblance to ultrasound images. I needed a name card, but I couldn't see the names from where I was standing. Within a moment, a cheerful nurse came to me and inquired about my identity. Then she said, "Let me introduce you to your baby."



"Let me introduce you to your baby." Those are words I will never forget. My heart fills with such joy, and I get so weepy when I think of those words.



She led me to a bassinet, where M. was wrapped from head to toe. His eyes were closed (as they would be for seven full days, like a little kitten). He was wrapped up so tightly, that I simultaneously wanted to let him be and scoop him up in my arms. The nurse immediately sensed my hesitation, and thinking that it was about all the machines he was hooked up to, she said, "you can pick him up you know," and she brushed away the machines and put the cords off to the side of M.'s body. Then I scooped him up, and drew him into my chest, taking him in.

In my former life, when I was very involved in childbirth education, I had seen so many real-life and video recordings of birth, with children coming out and gazing at their mothers, that I remember wishing M. would just open his eyes so I could really SEE him. At that time, I felt like I needed to see his eyes to really "be" with him, to really take him in (of course, I believe that the sterile smell of the hospital special care nursery contributed to this feeling, as the smell of starched blankets was too overwhelming for me to catch a whiff of him, and the bright lights and scratchy starched blankets encasing his whole body did not encourage me to run my hands against his skin).

This tendency I had does make some sense. Barring complications, medications in the baby's system, or too bright of lights (for example), babies are born awake and alert and ready for bonding. This means survival from an evolutionary perspective. Their physical structure during the newborn period emphasizes their eyes, which are big with dilated pupils, attracting the gaze of adults. But I did not have eyes to gaze into, so I sat and rocked my baby, too fearful of what the nurses would think or say to unwrap him and get a look at his little body.

I also felt a tinge of fear that perhaps he was totally unaware of me, that he was sound asleep and that I was nothing but another disturbance, another person rudely handling him.

I pulled him in closer to my body, hoping that even in his sleep, even with the tightly positioned blankets that kept his head from my skin, that he could smell me, however faintly. I rocked him, and rocked him, and whispered sweet nothings in his ear. I wrapped his fingers around my pointer finger. He was (and is) sooooo beautiful.



My heart swelled. My dear, precious baby. I was falling head over heels in love.

...to be continued tomorrow