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
I felt like this alot as a disabled child. Everyone had one set of known rules and I couldn't seem to master them. When I was 22 years old I met a group of adults with similar disabilities. Then I realized that my "problems" were actually directly tied to being disabled in a nondisabled environment. I needed to talk to/be with other disabled people both my age and older who experienced similar things. Even today, many decades later, I depend on connecting with disabled people to help me deal with the challenges of isolation and discrimination.
ReplyDeletePhoenix, what a beautiful, devoted mother you are. Thank you for seeing your daughter as the whole person she is. Breathe. Your daughter knows you love her. The onset of adolescence can be a rocky time. My girls are in their twenties, but I remember those years like surfing a giant wave; struggle to keep balance, and not let any of us drown. With my children (I still have two at home), I did consciously opt out of all "social skill" training they were offered. I didn't ignore the social minefield of the wider world, but I couched a lot of the unwritten rules like one would in a role playing game. That is, a lot of when they say X they *usually* want Y. No right or wrong, and I made it clear mom is autistic was just as befuddled as to *why* X means Y.
ReplyDeleteStill, this may be a process of years, not months, while she finds her level. I'm middle aged and still constantly tweaking how fully I can be engaged in the world of humans outside my door.
I love this letter, Phoenix. You are enough for your child just as you are. You are present, engaged, and paying attention. To help your girl get through this difficult time means extra time with you - just being - and plenty of time with your village of support - a a group of parents with your line of thinking and other girls who are close to their parents - also with girls/adults with the same disability - or other disabilities - whom you both can spend time with. It's important to know there are others who think like us and can help us as we mother our children.
ReplyDeleteIf she is like me, she would prefer to do her own learning by reading books she can disagree with (without emotional entanglement) and put down when it gets overwhelming. I would suggest books by Jessica Kingsley Publishing on unwritten social rules. I wish I had had those books available in my preteens and adolescence. Knowing why I had such trouble with eye contact and why other people find me weird when I could not sense any weirdness within me was very helpful. By reading a lot of the essays on Wrong Planet I have come to learn what is my fault, what is not my fault, what is not the fault of the "neurotypical", and ways to work around some of the social deficits that promote negative reactions. Now that I know my rigidity causes problems, I have learned to not express my deep rage at change, and to take deep breaths until I can cope.
ReplyDeleteI am grateful that I had a mother who, while she had no idea why I was such a difficult child, spent a lot of time patiently explaining in private why I should not have said what I said, and what I should have said, and why. She never let me know I spent time in classes for the "retarded" until I had graduated from college. She never let me know I was harder to raise than my siblings.
Thanks guys, you rock.
ReplyDelete