Becoming Visible

Should I say these things out loud?

Several days ago I decided to let friends and colleagues know about my blog. I sent out a link and asked for feedback.

• And some advised caution about Isabel seeing this blog and suggestesd more anonymity.
• Another pointed out that the content suggested pain that would be better dealt with through other means; my slider bar is really in the wrong place and needs fixing.
• Some felt that sharing this unexpurgated view could be useful for others facing the same predicament.
• I'm certain that others are perplexed and perhaps concerned.

All of this is very helpful. Meanwhile Isabel continues and I continue in an automatic script that pits my desperate desires for her against the reality of what her disability permits her to see.

Although this sounds like a sad realization, coming to this bare bones conclusion may provide the best opportunity for finding a more productive way to support her.

Becoming Undone on Friday

And I held open the door for a woman and her stroller on Friday morning at 6 am at Starbucks. And I remember her not noticing sufficiently and feeling my own attitude assembling towards the woman who felt entitled at 6 am in Concord at Starbucks.

And in line I turned to her stroller and saw a too-large child with coke-bottle glasses making sounds that scared me - that made me realize something was terribly wrong.

And the Starbucks clerk had already poured her drink without asking - knowing from many, many visits what this woman needed. The woman needing to be gone away with as little contact as possible.

I saw this and in 30 seconds I started to cry. I know what those glasses mean. I know what it means to look at a stroller and assess a body that is too large and sounds that are too old and too meaningless.

And I ACTUALLY thought of hugging the woman and telling her I understood - not to run away - not to hide. I stooped to play with the child - to make it all normal. But the woman was anxious to be gone.

In the car again all I could think of was string theory. STRING THEORY.

This is why. The 10+ dimensions that need to be accounted for cause me no concern. I understand parallel universes. I know that perfectly normal people that wait for coffee 10 feet from me have NO IDEA that any other universe of any other set of dimensions exist inches from where they stand.

I know that the reality of Isabel is miles and oceans and nations away from the kind people who wait in line with me, who sit next to me at church, who work next to me. And the gap between us is so immense. They have no idea that any other life exists.

I wanted to cry with this woman. Part of me worried that she would not understand and part of me worried that she WOULD understand without any context needing to be exchanged.

It is late on a Saturday night. S.

The Terrible Slider Bar

Conscious choices about framing the issue

This week I was explaining a recent sense of impatience with Isabel - a deep seated sense of impatience that catches flame too easily. A friend listened for 15 minutes to my monologue. Her reply was:

"Perhaps if you could re-adjust your percentages - your vantage point slider bar - so it was more about how her condition must make her feel and a little less about how it makes you feel - you would be less angry."

More interesting than any reply I had was that I started to reply without really knowing what I was going to say. Usually I follow a sequence that consists of 1) thinking about what someone has just said, 2) determining what I should say about what was just said and 3) compose a reply that is appropriate which consists of what I really think and what I think is acceptable to say. This process usually takes a few minutes unless it's a well worn topic and I have a welll worn position.

And I just started to talk. And was startled by what I heard myself say - which came from some other sentient part of my body that I was unfamiliar with. And that sentient part said:

"If I thought about how she must feel with her life, I could no go on."

"So I have sort of permanently shifted the focus to providing a stream of helpful criticism that assumes that life from her vanatage point is like life from my vantage point. All she needs are a stready stream of helpful hints ("Look people in the eyes when you talk." "Brush your teeth everyday." "Give lavish Christmas gifts to everyone that may have influence over your success in life.")

I was stunned by what I heard myself saying. So stunned, that I am still trying to figure out the enormity of what this means to her and to me with her. And let me tell you quickly that I do NOT have a nostrum with which to end this post. But I am of the belief that this has high importance - even though I don't really know what to do with the information. And I offer the suggestion for parents to ask this question of themselves and their significant parental community and listen to what is said.

Coming back.

Three weeks without a post - not much of a vibrant social computing professional. This absence reflects an absence of new big thoughts about Isabel. Which gets back to the 'Things that don't work'. What does not work is that big new thoughts will emerge and all will be fixed. So noted.

So the small idea is 'coming back again' and 'appreciating small steps'. Hard to appreciate small steps when what seems so wrong is still so wrong. But I advise you and me and Isabel; Come back. Small steps.

Yesterday a creative idea came from her science teacher Stanley.

• Isabel wants to be an equine surgeon.
• Isabel does not like homework.
• Isabel does not often DO difficult homework.
• Isabel learns kinesthetically which does not lend itself easily to the study of biology.
• Therefore Isabel doesn't often do biology homework and thus is not well prepared to become an equine surgeon in this galaxy.

Her science teacher offered Isabel a deal yesterday and Isabel loves deals. The name of the deal is 'Improve Your C Biology Grade to an A and You Can Work on a 'Special Project' of Your Design as Opposed to Standard Frameworks-Aligned Biology.'

Isabel was inspired that she could create a horse project. Isabel's beautiful National Showhorse, IceHot, lives with us. Her picture of IceHot in the snow is included.

This deal inspired Isabel to do her homework LAST NIGHT. Small steps.

NOT that she will spend 8 hours in careful preparation for her mid-term. NOT that she will do her homework EVERY NIGHT. These are 'everything will be fixed all at once ideas' and those ideas do NOT work.

Instead, small steps. I realized that getting her homework done LAST NIGHT was sufficient. And if she does her homework tonight, that is also sufficient - and so on. So coming back every night is a strategy. And doing one homework is sufficient.

This is the practice of reminding myself of the validity - and even sacredness - of small steps.

Moving Forward

How to get Isabel to connect with the world in its largeness? Here are three small acts:

1. Listen to "This American Life" on the radio in the car when picking her up from "Candy Striping" duty on Sunday afternoon. The intensity of the story hooks her every week.
2. Take her to a high school football game as a rehearsal visit. Explain the band, the seating, the cheerleaders. Stay for 30 minutes and then go. Do it in steps. First get her to agree to get out of the car. Then get her to walk down to the gates and just look. Gradually convince her to walk into the game area - but not to stay. Get her to buy food - as a practice and because she likes to eat.
3. Take her to Barnes and Noble to read on Friday night to lose herself in Manga and photography books.

This is all I have to share tonight.

The Fourth Thing That Doesn't Work

Hiding Out

Limiting the social events that give rise to comparisons. The hardest by far was going to my son's high school plays. The tribe of Winsor girls, my daughter's age, carelessly confident and blazing with potential, relentlessly moving amongst the front rows with the bedazzeled RL boys in tow - oceans and nations apart from their parents. My husband and I bookending Isabel - angry and sullen at their behavior. We were oceans and nations apart as we protected Isabel - a sad responsibility. The rest of the evening I would be filled with anger about the Winsor girl that my daugher would never be. Better not to go.

The message to Isabel must have been being social makes my family tense so it must be dangerous.

Michael moving to Harvard has healed me.

The Third Thing That Doesn't Work

Curing It Once and For All

Becoming angry and frustrated; arming myself with the assumption that finding the right neurologist, psychologist, psychiatrist or educational consultant will fix it all. Then campaigning to find that silver bullet - hitting hundreds of web-sites and signing up for studies or asking for references - until that bolus of desperate energy wanes. This sends no message to Isabel because the outcome is really no discernable action other than a signficant catharsis for me.

There is no silver bullet. All the amazing case studies of children with significant brain trauma that have developed compensatory skills are still not Isabel. The learnings are not transferrable.

Attending conferences where these amazing studies are presented generates a hopeful energy ("Things can be done. Things are being done. Isabel is not the worst case.") but in the end, it is just living with Isabel that matters. Isabel is not one of the amazing case studies on the Powerpoint slide.

The Second Thing that Doesn't Work

Averting My Eyes

Deciding not to see and not to interfere. Doing nothing: not asking about homework, not reminding her to go to bed, not checking to see if she has brushed her teeth, not caring how long she spends in front of the computer.

Deciding that her future is fate and that the only way to move on is to move on independantly with my life. Letting hers play out without my involvement.

This results in chaos and sadness for me. It sends the Isabel the messages:

1. Everyone is leaving me alone so I must be ok.
2. The world allows me to sit in front of the computer all night and not brush my teeth so,
3. My world is easy and requires little responsibility; only the aptitude for being invisible.

The First Thing that Doesn't Work

Being Isabel

You cannot become your daughter. You can't decide that you will become her damaged right lobe and you will direct her actions and schedule like a puppet. You cannot animate her spirit. She will not absorb what you want her to absorb and rise up out of disarray.

When she is not in line of sight she will be as she will be.

The practice of modeling the behavior you want her to emulate is illusionary. It teaches me but not her. It gives the seductive sense of control and betterment when none exists.

Writing her homework, coloring her pictures, cutting our her cards, doing her art projects to give her a vision of what can be done. These are bankrupt strategies that only send these messages:

1. I, Isabel, cannot do this on my own.
2. Someone will always do for me so I do not need to
3. My mother inhabits a different reality in which I am insufficient to participate so I am gone away.

s.