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!


______________________________________

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.
______________________________________

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!

One Day Delay

There are still one or two more posts in my series "Journey of an Aspiring Allie." I had promised not to post anything else until I completed the series, but this evening we got an offer on our house that is for sale.

It is probably way too low for us to accept, but we've got a lot to figure out, especially if we're going to take a risk and not accept the offer. Also, I found out tonight that my dad is near us on business. He didn't contact us because he is not able to get a break from work to drive out to see us and he knows I am afraid to drive in the city where he is, but G. and I decided if we drive up there early enough in the morning we could miss a lot of the traffic and surprise him and catch him for breakfast. So off to bed instead of posting, and I will continue my series tomorrow.

Sleep well folks.

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

On the marketplace beat

As talk of recession becomes more and more dominant in the public discourse, I find myself challenged to balance my views of the long-time human practice of predicting impending doom with the fact that yes, bad things do happen. The depression happened. Recessions happen. People lose jobs and houses. I could lose either or both. We all could. Things could get really messy around here.

While putting on my shoes to head out to work this morning, the image of the famous photo at left, Dorothea Lange's Migrant Mother (1936), flashed through my mind. The woman in the photo is Florence Owens Thompson (who later said she wished Lange had not taken her photo reportedly because Lange did not give her any compensation, did not send her a copy of the photo, and did not take her name or ask her anything about her story, etc.). She was thirty-two years old when this image was taken. That is, very close to the age I am now.

In many ways, my family is among the especially financially vulnerable right now. This possible recession has been precipitated by a housing crisis rip tide that we were swept into. We are carrying a rent and a mortgage at the moment as we live over 3000 miles from the home we own, a home which we have been desperately trying to sell for over a half year now. We've had to talk about foreclosure, though fortunately we do believe that we can avoid it.

The home we are renting is heated by oil. Before we knew what it would cost to heat this home, we spent $800 on oil in a matter of twenty days. We live in a rather cold climate.

In terms of income, I support my four-person family on a low middle class salary, with plans for my dw G to supplement this with her working class earnings. My job is not among the particularly secure. Our savings were wiped away in our move. We are already living beyond our means, despite the fact that we have no other debt besides our mortgage and home equity (which we took out to prepare to sell our home before the market took the dive that it did, and which also has actually and ironically been paying our mortgage) and that we are conservative spenders living a pretty simple life. It wouldn't take much to correct this, to get our budget back on track, if only the housing market could make it out of this slump. It is the housing that is killing us.

Predictions of the immediate financial future of this country and the world seem to vary wildly. One interviewee on NPR (Marketplace, I believe), who had proper qualifications, claimed that based on the patterns of previous recessions, we can safely bet that if we go into an actual recession, we are going to come out of this much more quickly and much more safely than folks are predicting. Many others are recommending that folks batten down the hatches. They are taking a moderate stance. They are explaining that this, like all recessions, are a natural correction/pendulum swing in the marketplace and that things will get pretty bad for a while but that we should all ride this out with some sense of patience and calm because at some point, we are going to come out of this. I've heard multiple people in this camp say, "Just start storing some nuts for the winter."

On the other end of the scale, there are a few who are predicting a devastating and long-lasting financial turn for the worst. A buddy of mine online, who apparently successfully predicted the "housing market boom" that occurred over the last couple of years, is suggesting that we all prepare for this to become not only a full blown recession, but for the recession to develop into a depression worse than "The Great Depression." The reason? Our whole economy is built around having cheap energy, and we are depleting fossil fuels at a breathtaking speed. Of particular concern, OIL. Batten down the hatches is an understatement for her recommendations. Think Y2K.

Here are the links she recommended:
http://www.richardheinberg.com/
http://www.peakoil.com/
http://www.energybulletin.net/
http://www.postcarbon.org/
http://transitionculture.org/
http://www.lifeaftertheoilcrash.net/
http://www.kunstler.com/

She basically is suggesting that we all prepare to be as independent of the economy (built on finite fossil fuels) as we can get. Stockpile food while you build a garden that you can use to feed your family. Harvest rainwater. Find ways to cook without cooking fuel. Move close to the places you need to go. Find ways to light your home without electricity and stockpile candles. Get a wood stove and secure wood sources. Consider moving to a climate without extreme hot and cold.

(more of Florence Owens Thompson from Dorothea Lange)

These are good earth-saving if not money-saving, and thus, potentially family-saving suggestions. However, if she's right, I fear my family is doomed. Not only did I just move over 3000 miles from a place of moderate, survivable temperatures to a place with extreme cold in the winter and extreme heat in the summer, but I also have not the slightest green thumb nor do-it-yourself ability. And since I've just moved to a rental home, I don't have the power to insulate, start a garden, install a wood burning stove, replace windows, nor do anything else to improve our chances of survival, at least not without permission from the landlord. And it is probably not in my best interests to invest in this rental home where I have a short-term lease, unless I end up signing for a longer lease or am committed to buying it down the road.

Of course, as another online buddy pointed out, the most extreme end of this side of the spectrum lands smack dab in conspiracy theory: http://www.projectcamelot.net/norway.html. And someone else aptly concluded that as humans, we tend to predict the apocalyptic in these types of scenarios. She's right. People have been predicting the end of civilization since the beginning of civilization. People have seen reason to have no hope for at least as long as history has been recorded in writing. Consider for example, this quote, which I've seen attributed to Hesiod of 8th century B.C.

"I see no hope for the future of our people if they are dependent on frivolous youth of today, for certainly all youth are reckless beyond words... When I was young, we were taught to be discreet and respectful of elders, but the present youth are exceedingly wise [disrespectful] and impatient of restraint" - Hesiod, 8th century B.C.

Perhaps we not only tend toward the apocalyptic, but also the apocryphal.

So yes, bad things can and do happen, and I will try to be disciplined enough in the next month or two to indeed batten down the hatches here. There is much I can't control, but I can at least start with these :

• Pay off some large bills that have gone unpaid for far too long...work on my credit score
• Get a renter in the home we own
• Re-evaluate our monthly budget and cancel any services we no longer use, etc.

At the same time, fretting over a recession is just going to contribute to the emotional response that seems to be dooming the stock market right now. While I find it an interesting intellectual exercise to consider how folks would respond to a depression in these modern times of ours when we are used to living longer, for instance (a post for another day, perhaps), I don't find it particularly calming to my own already high stress level to predict what may come to be known as apocalyptic and apocryphal stories. I'm visualizing instead, a stable future...for my family, the United States, and the world.

...And For Anyone New

In case my renewed blogging has caught any interest, and you want to know who the heck I am talking about when I talk about my kids, here is my post introducing my family in August: http://becausethatiswhatmylifeislikerightnow.blogspot.com/2007/08/for-silly-time-waster-go-to.html

I'm Baaaaaack!

Well, you've been on my mind. I can't just let this one go...not another blog ditched just a few months in. No, I'm sticking with it this time.



I'm ready to talk about neurological diversity,
what my kids are up to,
adoption reform,
my family's continuing struggle to finish our move to New England,
why the average Unitarian Universalist is UU for just five years,
the debate over charter schools and my effort to start one,
why my homestudy has gone haywire,
what makes a congregation really welcoming,
the Mother Theresa book,
why I think the Southwest College of Naturopathic Medicine should start apologizing to the public because of a man named Kurt Tyson,
my February trip to New Orleans for hurricane recovery,
compost for beginners,
city planning,
my search for friends in my new state,
and anything I've heard about on NPR at any moment.



But I'll start with just the cutest little story about Baby M, who is not technically a baby, but in fact turning three in April (I really just cannot wrap my head around that one).


So I've been asking M what kind of a birthday party he is going to have.


The other day, he finally answered me. He said, "a surprise party."


This really got me cracking up. My mom sent a copy of Miss Spider's ABC book a while back (http://www.amazon.com/Miss-Spiders-Abc-Book-Spider/dp/0590282794/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1201316456&sr=8-1).


It has all these little bugs getting ready for a party...and then on the second to last page it is dark. All you can see are the bugs eyes, and it says "sshhhhhhh..." and then you turn to the last page and it says "Surprise! Happy birthday Miss Spider!" My little M loooooooves that book (his favorite page is M: Moths Mingle).