When Your Vision Is Too Expansive

I have difficulty compartmentalizing information.

This is often a blessing. I am easily able to take a broad view of systems and also transfer information from one system to another. At classes and workshop, I find myself impatient when other attendees have to stop and ask, "What does this have to do with...[fill in the blank with whatever the topic is]?" (Yes, I found college almost painful.) If the teacher or leader of the class or workshop has made the connection, you can be certain that I too have made the connection. When other people are saying things like, "This is nice, but I was really hoping to get some tangible ideas I can take home," I often am sighing inside. My neurons have usually been firing off ideas the whole time as I've connected all types of information in response to what I am learning.

At times, though, my inability to compartmentalize becomes problematic. Today I found that a global perspective I have been taking for granted for some time is not a common world view. I didn't realize until after I pissed someone off (at work, no less) by taking my broad view as a given. Actually, it took me getting upset that I'd pissed someone off. I got upset and called a colleague who listened to me explain my thinking to her, and then she said "I have never thought of it like that before." The subsequent dialogue in my head went something like:

Oh.

Oh! Huh.

Really? I could have sworn that other colleagues have talked about this before.

Is it just me?

I don't get how this can be compartmentalized.

I am so confused. I am so hurt [that the person I pissed off was so offended].

Sometimes it is hard not to feel crazy.

Postscript: A few days later, I am feeling much better. I called another colleague, one from the west coast whose response to the idea that I think much differently than others was, "you do?!" Ah, it is likely another one of those east-west coast adjustments I am making. So then I talked to a colleague out here who is one of the longest-serving and most respected in our field. And though she has worked for 30 years in the northeast, she also is very involved in the national organization of our association and has a good understanding of regional differences. She is a tremendous mentor for me! I wanted her to help me shift my thinking, if necessary, into a more regionally-appropriate form. But she told me I was spot-on in my thinking, and that more than anything I just have to be patient (and try harder not to scare people so much with my wild west ways LOL).

Tears of Recognition

I saw a seizure specialist for the first time today. It was a fiasco getting there. The hospital was completely disorganized, and the right hand did not know what the left was doing. I was sent to three different locations (in two different buildings)-- and had an inquiry by my name placed in two different computers by two different hospital staff people-- before finally being sent to the correct location for the seizure clinic.

The clinic is part of Harvard Medical School. For a good portion of my young adulthood, I wanted to attend Harvard Medical School. Life meanwhile took another direction. It was odd now to be driving past the school as a patient, and to have (presumably) one of its students (a resident perhaps?) conduct my patient interview and physical exam.

After finishing the interview and the exam, this doctor-- who I will call the "interview doctor"-- left the room, and he came back about ten or fifteen minutes later with the doctor to whom I'd originally been referred, who I will call the "recommendations doctor." She made the recommendations for next steps.

Basically, there are two things the "recommendations doctor" would like to do, to get a better understanding of what is happening in my brain. First, she would like to send me home with a portable EEG unit that I will keep on for 48 hours. During this time, it will take intermittent recordings. G. can also turn it on to do a recording if she feels I am spacing out. This provides a panaromic view of the electrical activity in my brain. The EEG I had done a while back was only a snapshot, and although it came back abnormal, provides little information.

The other thing the "recommendations doctor" would like to do is a high resolution MRI. Though the MRI I recently had been done was with contrast dye, giving us a good amount of information, the high resolution MRI will give us even more information.

The "recommendations doctor" explained to me that she is guessing I am having seizures that are impacting a large part of my brain, or indeed the whole thing. My symptoms would be more localized if the seizures were more localized.

When she first came into the room, the "recommendations doctor" asked me some clarifying timeline questions. Since my memory has been impacted in the course of my symptoms, the timeline had been difficult for me in the first place. But basically what I explained to the "interview doctor" was that I don't remember being especially symptomatic until maybe about five years ago. It has gotten slowly but progressively worse since then, and only within the last year or year and and a half was it bad enough that G. was alarmed to the point of forcing my hand so that I would see a doctor.

The clarifying questions were interesting. The "recommendations doctor" was able to use certain periods of time (for example, classes I took in high school) to help me create a better timeline. It was during that conversation when I remembered some experiences in school from early childhood. They may have been early symptoms. Tears began streaming down my face as the memories poured in. For years, those memories were markers of low academic self-esteem. Suddenly, those memories were also transformed into potential markers of a seizure disorder.

I was overcome by the need to apologize to the doctors for my tears. I felt so silly, sitting there in the clinic crying as I remembered little hardships about being a young student. The "recommendations doctor" let me know it was okay to cry. She said, "It seems to me we get a lot of tears around here. I think they are tears of recognition." Indeed.

She said that the seizures can go unnoticed for years and years even if they occur for say, as long as 30 or 45 seconds. She said she felt like intelligence could make up for large chunks of missing time. The brain just does double-time. I guess she was saying I am smart ;-). But this gets challenging as we get older, she explained, because our brains end up doing more multi-tasking as we balance our jobs and our families, and so forth. When we are younger and more focused on something like school, we have more reserves for a brain doing double duty. I don't have that luxury now, which may be why things are progressing and I was finally pushed to see a neurologist. Apparently, this isn't rare.

I had been thinking about my case as a "new(ish) onset" of seizures. Hmmm.

What an interesting day it has been.

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.

When Your Normal Brain is Abnormal

I haven't posted pictures of my brain because I haven't figured out how to save the pictures from the disk onto the computer or even directly onto the blog. The images are viewed using a special program that is on the disk. Suggestions are welcome. The images are creepy and beautiful and amazing and wild all at the same time. I wish I could share them.

I talked with the nurse at my neurologist's office today, and she said the MRI results were normal. My response was disappointment. "That's discouraging," I told her, "Now I don't have any more answers."

The neurologist warned me about this when we scheduled the MRI. She said something like 70% of abnormal EEGs (and I think she also said new onsets of seizures too) have no known cause. I was just hoping I'd be among the 30% for whom a cause could be determined. But instead, I am stuck with an f'ing NORMAL MRI, and I really don't know what I am supposed to do with that.

I want something not too serious but treatable (and definable)! I don't want to continue taking meds with a bunch of side effects if they only are based on a rough guess abut what is going on. Right now I think the meds could be making a difference, but it is so hard to tell with the accompanying fatigue.

What does one do when one's structurally normal brain is behaving in abnormal ways?

I wouldn't feel so badly about the results if my neurological functioning didn't seem at all "degenerative" to me, if my quality of life wasn't declining in any way. I also might not feel so badly if I could think of more upsides to these particular problems. So on that note, here is my attempt to make light of a dark situation........

Top 10 Reasons Memory Loss, Unreliable Cognitive Functioning, and Funky Lack of Common Sense Are Awesome:

10. I've given up on trying to memorize anything.

9. I'm learning to be a very good note taker.

8. Being a good note taker means that I have quotes, written on paper, to back up my arguments when someone denies what they've said :-).

7. I don't look at the world like anyone else...I am very unique.

6. I don't feel obligated to talk to any particular near-strangers when I am out and about...I don't know if I know them.

5. Everyday I start fresh and new.

4. I don't worry as much about all those things I have to do...I don't remember that I have to do them (actually I worry MORE, but this is a top 10 list in good humor and I am supposed to be thinking positively).

3. Now there is a good reason people are calling me an oddball.

2. I don't remember a lot of stuff I wouldn't want to remember anyway.

1. When I am brilliant, I feel extra elation because it is so rare now.

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!