Saturday, August 31, 2013

Letter From Devoted Phoenix, Part 3 (Important Note)

Dear Readers,

This morning a thing happened in an asynchronous online thread between two of my friends, and it was this: one of them liked my post answering Devoted Phoenix, which you can click on here, and said so a little enthusiastically maybe, but you know, supportive friend and all... The other friend, who is also super supportive, took this personally, what the first friend said, took it as a kind of indictment against those who do not or cannot exit stage left.

Both of these people are people I've spent a good deal of time with in real life and seen them with their kids so I know they are *absolutely fabulous parents* as well as this: when I say they are my friends I do not mean "acquaintances."  I'm using the term the opposite of loosely.

So I cannot possibly let go the fact that my answer had in it the power to cause this kind of hurt due to the fact that I did not write part of it adequately.

I must fix it.  Important note:

[Photographic image here of a hand holding out an envelope stamped with a giant, red, official-looking seal of the word "IMPORTANT" in all capital letters with a red border. It is not letter-sized, but rather note-sized, the envelope.]

Here are some things I absolutely did not mean under any circumstances.  I did not mean to imply that all the problems that there are would be resolved by doing a geographic and exiting stage left, and by extension I super mega extra did not mean to imply that families for whom this is not an option or the best solution are doing a bad job in some way.  I mean things very, very contextually; in that answer, I was talking about situations like the one being described in the original letter written by DP, which is linked here.

In real life,  it is difficult in many places to get transferred to another school, or granted the ability to homeschool (if you wanted to go for that) and it would be especially difficult if there were no evidence that the school setting itself was part of the problem, or the bulk of the problem.  However, from the evidence in the letter I deduce it will be very easy for DP's family to show (even almost *prove*) that the social scene at this particular school is a Big Giant Issue if not the primary and immediate emergency in her daughter's life right now.

Also if any services are being used that are actually helpful, it is not easy to keep these services going in many states or districts while pursuing other placement options.

What I am very sorry about here is that it seems like I made exit stage left sound like: 1. the solution to everything, which I totally disagree with, because it's simply not true; and 2. it's just ever so easy, which was hurtful to my friend.  The first is pretty embarrassing to me as a writer, but I'm extremely sorry about the second thing.

I exited high school using a technique that is probably very traditional but that I do not recommend. I am going to say a little about it here to try to rectify the pain I caused and also I hope the book comes out soon wherein I have a chapter all about my schooling years, because it details this situation much better.  The book comes out this Fall.  I will let you know.

So: the method that happened for me was extreme truancy because I could not bring myself to go in that place. I would get ready to try every day and I didn't put this in my chapter and I still don't know if my parents know this so it's a new piece of exclusive information for you, TGN readers.  I always took the bus to the correct bus stop for that high school and then took to my heels, even if the places I would ultimately end up that day were several miles away.  Always.  I did try.  But I could not, like I said, get myself in there.  Although sometimes I sat in a tree on the grounds because I did love that tree, from which I could see a fountain.  Anyway.

I became expelled from that high school which is the horribly non-easy method my parents had to deal with, the news of my extreme/complete truancy hitting them out of nowhere as I had not been able to communicate my distress to them properly because I did not have the words.

Then my parents fought very very hard to get me placed in an alternative school. This also was not easy for them.  Any problems I might have had there would *not* have been solved by a geographic because it was a very good placement, so these problems were solved in *other* ways.

I am sorry for the misunderstanding.

Thank you for listening.

Much love,

Wednesday, August 28, 2013

Letter From Devoted Phoenix, Part 2 (Answer)

Dear Devoted Phoenix,

Here I am, back to answer this letter you posted, which I link to here in case anyone missed it.

My friends answered in the meantime, and I loved what they had to say.  Sorry for the delay on my part.  I couldn't say anything in the moment because I was overwhelmed with the remembrance of things past, of the time when it came to pass that I couldn't, could not, endure where I was at school for even a moment longer.  It started to start happening at around your daughter's age.  We tried some things, but the TOTAL ACK... well, while trying to make sure I could remember how to help avoid that, I had the big giant I want my Mommy in front of everyone.

So glad my mother said what she said, and the relief I felt on hearing it when I finally got hold of her today--because it did not get fixed at quite that young an age for me, so I didn't remember what to say fixed it--was unbelievable. She talked to my dad about it and they remembered what really helped.

Do a geographic.  When the other kids have become being like that, nothing will stop them being how they are being and doing the doing of those ways.  It has become the social milieu and it is not up to any one person to change a culture.  So you can leave.  Exit stage left.

[Here is a photo of an actual old tin theatre sign, which says Exit Stage Left, with an arrow pointing left, and the iconic Tragedy and Comedy masks appear to be hanging from the top corner.]

The exit stage left, ahhhhhh.  I think this changed my life.

It can be another school, it can be homeschooling, this is not something I can say, but of this I am sure: one cannot live in a social situation in which one cannot live.  Escape hatch!

But this brings me to the second thing, and I do believe I can really say this to you because you seem like the kind of person who can understand and make it happen.  When I said I couldn't say where to escape to?  It's because I don't know your daughter, and she seems from your letter to be old enough to be the kind of person who would have something to say about that, and nothing about us without us, which you totally get, and that drew me to your letter.  I hope you are in a location where she can find others to hang out with who are cooler, and she might have some ideas about where this is likely to be for her.  Or, she might not.  But get her out of that hellhole, because at least new people will be new and not have a toxic history together.

One of the things that also felt really good to me as I started growing up, by the way, was political activism... we didn't have the Autistic Community back then because I am really super old, but I loved trying to subvert the dominant paradigm about other injustices going on.

Do you think she would like to write to me and get in touch with some older Auts online maybe?  Help create a website for kids her own age who are interested in what she cares about, to chat?  Lordy, I wish we'd had the Internet.

Thinking good thoughts for you.  Write back and let me know how things are going?


Monday, August 19, 2013

Letter From Devoted Phoenix, Part 1 (Letter)

Today I got this beautiful letter in the e-mail. The writer offered that I should "feel free to excerpt bits if I decide to respond," but the writing is so full of truth and the clarity of the murkiness that is in our seems to me the daughter in this letter is so very well understood by the writer, and so well understood also by me, myself; and I did not want to remove one word of this letter, because I also believe that the readers will understand the writer and the daughter, and may wish to answer.  And I want to talk to my mother.  So, readers, I offer you this letter, in its entirety, which contains important and thorny questions that are central to so many of our lives.  Dear Devoted Phoenix, I thank you for writing, and will answer this also myself, in a column coming soon.  Thanks everyone!  Love, Ib

Now here is that letter itself:

Hi there,

My daughter is eleven and she was diagnosed with Asperger's this February. I have a hard time being brief, but I'm going to try. We didn't consult for help until she was clearly having an abysmal time at school with other kids and literally believing she was an alien who wasn't "made" for family and friends, kindness and respect, and wanted to die of loneliness and the despair of not being able to do anything right or alternately force her gregarious social self to become a loner who used her isolation to protect herself from the whole business.

At five, I sent my daughter to an alternative school with a child-led pedagogy and a beautiful community-based learning environment. Lots of opportunities for freedom and responsibility, leadership, creativity, etc. I didn't know she was on the spectrum, but I did know she had a strong personality and that she was likely to be singled out for it. Part of my hope was that she would not be labelled and pathologized at this school, but rather supported in developing her strengths and the necessary skills to use her personal power to be a leader without being a tyrant, etc. The school has done a beautiful job of focusing on her strengths, but... I wish I'd had more information about her challenges sooner.

Now, I have a child who thinks she is a freak, who contemptuously rejects the forms that consideration for others takes, as well as not quite grasping why these things are important (which, being at *least* half-aspie myself, I understand) OR who hates herself for not doing the things she knows she could be doing to make relationships better and feeling deep shame and anxiety as a result. Sometimes it feels like she apologizes for simply existing and being human with human needs.

I want my daughter to be herself and be okay, I always have. I want to celebrate her creativity, her caring for vulnerable beings, her beautiful voice, her awareness of deep subtle things, her sensitivity, her earnest efforts... and I want to see her less crippled by the anxiety and shame of trying to navigate the NT social world and failing. She tries so very hard, she does what seem to be the "right" things and still it doesn't work. She doesn't trust any "help" to actually be helpful for her. And my heart breaks because I remember my own struggles to grasp the importance of manners and social graces, I remember how much it made me feel like it was all about making myself small and not asking for anything, not expressing my truth, my feelings, my needs, pushing them so far away that I couldn't even identify them myself because otherwise they would overwhelm me with their urgency and sabotage my efforts to fit in, to be safe, to stay out of trouble. I was an adult before I made any peace at all with these things... but I survived because I am academically gifted and creative and my special interest is human emotion and behaviour itself. My daughter hates academics, loves art, and really doesn't care why people do what they do.

I have no idea how to help her. Part of me wants to help her learn the NT social rules, not based on good or bad, but just on the kinds of responses their presence or absence evokes in others (myself included). I want to support her to be able to make her way in the NT world... and, I also want to be sensitive to her needs for integrity, for the dignity of her own being. I want to let her be different and celebrate that - but at 11 she sees nothing to celebrate in being a freak as she puts it, and none of the strengths I see in her matter one iota to her in the face of her difficulties. She hates her Aspergers, hates herself by extension, and experiences the entire world as mean and full of personal insult and sabotage... Trying to show her that there are things she can do to help make things better with other people just translates in her heart to the belief that I'm saying it's her fault they are mean to her. In those moments, she believes that I think she deserves it. Which I most certainly do not. I don't know how to help, and I don't think she's ready to try to understand why other kids respond to her like this. It just hurts too much.

It's so hard when we are told (and I know because of who I am) that she can learn to fit in and be the "normal" she so desperately wants to be... and yet trying is such a complex proposition for her, so full of earnestness and anxiety and franticness and shame. And I know that, if she is anything like me, the world will eventually see her as normal, expect her to *be* normal and know all the things instinctively that "normal" people know and do... but inside she will never quite feel she belongs, when she is tired and stressed, she will still transgress the rules and be seen as socially inept, long-term friends will still tire of her innate processing of the world through her own experience, her use of sharing to connect instead of listening, and eventually object loudly or leave. And she doesn't have the self-containment that I did as a a child and now. I'm not my mother and I haven't forced my daughter into a box of stifling social appropriateness or taught her that intense emotional distress gets punished or ignored. Maybe that was a disservice, as her peers certainly have different ideas about those things... 

She is seen as normal, but spoiled and childish, defiant and impulsive. Sometimes, I wonder if it's better to be seen as one who is not "normal", who is atypical, who has a reason or an excuse to be different, but then that often translates to sympathy for a broken thing, and she is not broken, though she feels that way. Compassion is in short supply somewhere lost between unrealistic expectations and dismissive pity. I don't which is better/worse.

It's taken me years to get over myself in my reaction to her hostile and "disrespectful" behaviours to understand her rage as protective, to learn to reach beneath it to touch her vulnerability, to discover her distress, to name it so she knows she is seen, to hold her in it. Except now, she has learned to reach her vulnerability herself and own it, and she has no skills to manage her anxiety, her shame, her hurt in a world that doesn't see her, doesn't respond in ways she experiences as caring. And she doesn't want to learn the skills she is aware that kids her age already know: it's humiliating for her. So she gets angry and resentful again. 

I try to get help, but I, too, am reaching a point where I don't find the help helpful. I am torn between wanting to help her find the motivation to learn the things that could help alleviate some of her social distress (because when she wants to do something, she is very capable) and wanting her to have supportive help that doesn't try to change her, to cultivate places that can accept and help contain her emotional intensity. She gets too much information about how everything that matters about her is wrong and in need of reshaping. She feels like a baby because she can't do those things. And, I'm also a human being trying to manage my own sensory overwhelm, my own needs for consideration, just like the rest of the world she has to deal with. I can't always accommodate, and I'm not convinced that being accommodated all the time would serve her, either.

It's very confusing and heartbreaking and frustrating. I suppose my question is, with a child who has the potential to "fit in" with the NT world, and who very much wants to but tangles herself in knots trying... do I pursue social skills training and help her shift how she presents herself (which she doesn't really want to do) or do I encourage her to be her Aspie self when on an every day basis, even at home, her self-expression generally gets lost in reactions to her delivery? I want people to be able to see all my daughters wonderful gifts... I want her to be able to see them... but right now, they are so obscured by this pressure (inside of her and out) to get it right. And she's smart enough to have figured out that most kids just would never accept her if she continue to approach them without fundamental changes in how she behaves that really go deep into who she is or isn't. She rebells or tries to mortgage her soul to pull it off and neither gets anyone anywhere.

So much for brevity. Thanks for sitting with me long enough to read all of this. Feel free to excerpt bits if you decide to respond.

Devoted Phoenix

Thursday, August 15, 2013

Got Your 6

6 is my favorite number.

Also, there is another meaning.

Ground rules alert: this is not a forum to talk about how we feel about war.  This is about the lived lives of people, of the veterans, and the fact that many people who go to war acquire disabilities, and thus become disabled, and we who are disabled already know how to be disabled, and we who are family members of disabled people already know how to be family members of disabled people.

"Got your 6" is a military translation for the idiom "Got your back" which came about because of WWI fighter pilots' picturing of the airspace round their planes as being like a clock, with the nose being 12 (so the tail is 6).  Here, watch this PSA:

Now, they don't go into the disabled part of it, but it's there, and we all know it.  People lose limbs and get PTSD, and we know about that stuff.  This is one of the giant reasons why we need to have celebrities and organized campaigns to make sure veterans can get jobs and they and their families can be taken care of when they get back.

They don't know how to be disabled already, or necessarily what is the best way to be supportive family members.  We do.  We can help.  We can have their 6.

There's one more thing about this.  Goodwill is one of the sponsors, so there's a good side effect of our supporting this particular campaign.  Because disabled veterans have not been disabled the whole time, they will not likely have been conditioned to take kindly to the practice of sub-minimum wage payment that goes on in Goodwill shops in states where that is still an available legal loophole.  So there will be fresh new sets of eyes on that problem: angry eyes, and many.  This bodes well for change.

And I'll say one last thing: we may sometimes unfortunately tend to think of life from a scarcity model, like this: if veterans get jobs, there'll me none left for me, or for my child.  That's not really useful, or really real.  Campaigns that create jobs boost the economy, and, by definition, create jobs.  Also, campaigns that call attention to societal needs call attention to societal needs, which causes an aura effect causing attention to be pulled toward adjacent and related needs.

The ADA was not signed because of the people in wheelchairs who were relatively socially powerless....

If we think generously, we think better.  We build coalitions.  We look for commonalities and in our social usefulness we live lives of greater fulness. Let's be there for the veterans and their families because we have knowledge and skills that may be of service in untapped ways.  And in so doing we may make new friends, friends whose knowledge and skills may further the good of everyone.  And these new friends may find themselves serving their country alongside us in exciting, novel ways they could never have imagined.


O & P.S. Here is the website to check it out: . I had forgotten to link to it and Andrew Dell'Antonio who is extremely awesome gave me the reminder!  xxoo

Friday, August 2, 2013

We Are Like Your Child: Socio-Sensory Distress

Dear Readers:

This link will take you to an article I just wrote on our collective blog, We Are Like Your Child, masterminded by my friend the longtime activist Kassiane A. Sibley so that a wide variety of adult Autistics and friends with other disabilities could really go into detail about some of what is hard, and what we do to work around it, in order to help others get ideas from our experiences.  Thanks very much for all your support. 

Love, Ib