Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Wednesday, January 4, 2012


So, like many parents of ASD kids, I have reached out to the internet parent support communities who seem to understand what we are better than the people we live with and near.  One such site engendered a discussion about IEP's and how to help the educators see the value of particular supports and get schools to provide them.  Specifically, since I have one diagnosed Aspie, the discussion was about social supports for Asperger's students.  It seems pretty clear on most of the support sites that many parents are having trouble helping the educational community take the leap from state mandated socialization to applying specific supports for specific students.

Obviously that statement makes my stance on the socialization of schools pretty clear, but some background would be useful context for you.  I was born in California, the southern, sunny part, but my parents are both from Tennessee, the eastern, Appalachia part.  My father spent 30+ years as a public servant for the people of Los Angeles, and my mother spent 20+ teaching in Orange County.  They came to CA after the Vietnam war, because CA is a place of opportunity (has been since 1859!). Like most, their intention was NOT to stay, but life intervened, so I was born in CA.  I lived there during the school year, and spent summers in TN with grandparents, extended family, and my roots, my past.  As I aged I found myself an interesting hybrid of Southern CA individualism and Southern "breeding".  My experiences of being with my family in Appalachia directly belied what I saw in California
As high school passed, especially as honors and Advanced Placement (AP) English classes became literature classes, it was clear that the material we were being given was designed for one purpose.  The curriculum we were forced to regurgitate in class was about "honoring" ethnic "diversity" - and belittling American history.  Now it is possible that I had a set of teachers who were small minded, but as an adult who's been in the classroom, I am willing to bet they were teaching what they were required to.  It became crystal clear to me when we studied Mark Twain's works.  Having been in redneck trailer parks and generations old family cemeteries and knowing 2 grandfathers who worked on the atomic bomb (one a chemist, the other in a foundry), I recognized the patterns of speech & behavior Twain described, both as an accurate description of a dying culture, of the legacy of the War Between the States, and as a mirror in which to evaluate the base values that drive American culture.  That is NOT what was taught in class though.  The teacher impugned the integrity of Twain by forcing us to recognize the works as disgusting testaments to Southern depravity.  Granted, I was young, but I felt very wronged.  Further, there was a movement in history classes to villanize the atomic bomb that ended WWII (the movement that started the counter resurgence that named the WWII generation "the Greatest Generation"), and I had family members who spoke to a different reality.
As my education continued, I learned more about educational psychology and history, gained experience teaching in public, private and parochial schools, in inner cities (Washington DC) and rural moneyed areas (Boyce, VA).  The shadow of "political correctness" is vast, and permeates every word that is taught in every classroom, for the purpose of shaping the minds of our youth so that we can apply our newest program to "create a better future through our children" - in other words we keep experimenting on them in an effort to make them "avoid our pitfalls" or "erase our prejudices".  The very basis for modern American education is about instilling (forcing) "middle-class" mores & values on immigrant children (the Jane Addams Hull House of Chicago creating the precedent), an effort to organize and quell the threat of unsupervised children roaming the streets (labor laws took them out of the mills & factories, but all adults in a household had to work long days to earn a living... hmm, sound familiar?  And whether the "threat" was perceived or real?... Well, I wouldn't want roving bands of teenage boys in the streets today either - they are most often "profiled" by police as "trouble-makers" for a reason - so gather them up, make them learn - after all it will improve the economy because they will all be able to read, follow directions, and everyone will know the base/ core values & history of America - create a common culture when the country was overwhelmed by ethnic diversity - hmm...)  My conclusion: American Education is about socialization, as in: socialist socialization that subverts diversity in the effort to "create" unity.

So in comes my Asperger's kid.  Well, the diagnosis itself is based on him being socially inept, since to be Asperger's you have to have at least "normal" IQ and communication abilities, not to mention the "comorbid" peculiarities manifesting as Obsessive Compulsive Disorder (OCD) and Sensory Processing Disorder (SPD) and Oppositional Defiant Disorder (ODD) and Attention Deficit Hyperactive Disorder (ADHD).  WOW... that's a kid who will not be easily fitting into the socialist efforts of standard educational practices!  And we have misled kids for tooooooo long.   We have let kids think that high school will be the "best years of their lives" and that "being cool" is acceptable, instead of being responsible.  We have created a culture that separates us from our children, and teaches them that they have to accept the dictatorship of the teacher (I am not accusing here, I have done the same myself) and then create an unsupervised culture amongst themselves (at recess, at lunch). And you betchya! - my Aspie received horrendous bullying, in 1st grade, ostracized at the cafeteria table every meal for at least 3 months (2x/ day), until finally hitting back, in an effort to stop the harassment.  I have been "warrior parenting" for 3 years, since my child was 3 years old and the neurologist told us that there would be problems on the playground, that social isolation that would change the diagnosis from PDD-NOS to Asperger's.  I researched, I read, I talked around, I offered tips for activities, I asked for specific accommodations, I called or emailed or showed up at school every other week. We got a prescription/ recommendation for socialization supports from a university pediatrician.  IEP meetings always ended with social support "not being necessary".

SO here's where the question of ADEQUACY comes in.  In order to cover their butts, the educational laws are written so that ANY medical information is only to be "considered", not in ANY way binding to the school.  The schools have created laws that clearly state that what is "educationally" necessary is NOT what is "medically" necessary.  Because the public system cannot possibly meet all the variations it will meet in a public, inclusive population, they have to be sure the laws are written so that they do NOT HAVE TO meet anyone's specific needs, they just have to TRY.  So if they can document that the most measly effort was conducted, then their butts are covered, they have followed the letter of the law, they did something, even if it wasn't the best thing for that kid; 'cuz they are not there to help each kid, they are there to subjugate the masses.  So every parent strives to create a best, improved future for their child, as God intended us to, but the system we have created to support us only has to be "adequate". 

The specific advice I read on a support site regarding socialization supports urged parents to be sure to only ask for "adequate" supports in order to get the school system to cooperate with you.

Yet, our school argued with us in IEP and eligibility meetings that they did not NEED to provide social supports because his "ACADEMICS" were not affected.  So being in in-school-suspension one day a month is not affecting his academics?!  So even though "social deficits" are diagnostic criteria for "high functioning autism"/ Asperger's, they are irrelevant to discussion in how to help him succeed?! There is no recourse for us, except to continue negotiating with the people who have failed him for 3 years already?  Just because my child has a label that makes it easier for them to even try to help the problem does not mean that he is the ONLY student with a problem.  When the sped kids are set up to fail, ALL the kids are set up to fail... sped kids are just the "easy" targets for bullies - every kid in that school sees clearly EVERY DAY that personal value and difference is punished, that the best they can hope for is to be "just enough" - mediocre.

ADEQUATE?!  That is a ludicrous word.  OF COURSE PARENTS ARE NOT GOING TO SETTLE FOR ADEQUATE!  Is there any other business in the world that keeps itself going by striving to be ADEQUATE?... The educational system as a whole continues to settle for adequacy and mediocrity in every child they serve, not just sped kids, and then businesses are having to reinvest in training on basic courtesy (customer service skills) and communication (inventory, money handling, etc.).  Just look into the training for ANY retail job. When you go to work, does your boss expect you to just be adequate? Or is the reality that in today's collapsing economy that excellence secures your position? That you are trying to make yourself indispensible to the company?

When we stop short changing ALL the kids? 
When we start expecting EXCELLENCE, Personal excellence?

"Adequate" is NOT enough, for me personally or for society, or for my kids.  How much pride can one possibly take in one's self if the pinnacle of achievement is mediocrity?

my greatest fear - being a bad mom

So, this is a common theme for many. I know that the depth and sting of the guilt I saddle myself with about what I do with and for my kids and how I do it is not anything new.  Through the ages, children have been the force that inspires civilizations and individuals to improve themselves, to help as many as can be helped, to make the world a better place for the future. 
            I tend to have that "long-term"/ "forest" view of history. I know that the base emotions, my drive to protect my children, to arm them for life, is exactly what my mother felt/ feels, and what my grandmothers felt, and my great grandmothers felt.  There is universality to motherhood, an age-less/ time-less Truth to the experience, recognized across cultures and generations and geography. (I have lots of thoughts of that too, but right now I need to expunge the guilt part.)  Mothers are connected, to their children, to each other.  Kids can instinctively tell who will "mother" them and who won't, who that safe "grandmother" is in any space they find themselves (the lady at the pool, the one behind you at the grocery, the one watching at the park...), who will help when they need a band-aid, or to find the bathroom.  As with all of history (again another topic), the experience has a universal aspect despite the peculiarity of the details in each and every "case study".  So the guilt I carry is not new, and probably not even wholly mine.

The problem for me is the "Dragon" piece, the part of me that seeks to attain the height of wisdom.  I know that I will have a tendency to "over" mother, to smother with an effort to protect & train "correctly", to be wise for them instead of to them.  I have striven to combat that by giving my children space to be.  I am sure that there are some who would argue that I have created an environment that enables my child's autism, letting that one act out & be naked and so forth, negotiating instead of enforcing.  I have striven to academically justify all those decisions (more later) with Montessori methods and the Protestant definition of the divinely different individual and telling myself that I just have to choose my battles (which many other "autism mom" blogs have talked about how autism redefines that old adage).
And I am, of course, an over-thinker.  As parenthood approached I searched and searched my heart; I thought of my experience as a child, of the dynamics I witnessed in generations of my family (all sides), of what went well and what didn't, and I wrote a 10 page letter to all 4 grandparents about what I expected of children, and how I expected my kids to be raised, trying to describe what I thought a good parent would do, look like.  Some of them took it better than others, but I got it all out and made my position clear.
            Of course, life is never what you thought it would be. Babies stop breathing, diagnoses surprise you, economies tank, equipment breaks down.  My story is no better or worse than many, our challenges singularly our own, yet very comparable.  This week, I feel that the wisdom I sought, the base I established, is woefully inadequate.  I expected challenge, but I didn't expect to have my core beliefs challenged, my integrity to myself questioned. And thus, the seat of my guilt:

There are LOTS of focuses for that guilt.  There are some role models I am striving to avoid; there are some I am trying to emulate.  I should have performed the rescue breathing sooner, I should have recognized the signs sooner, I should have sought interventions sooner, I should have followed my instinct to homeschool, I should have balanced time between the kids better, I should have prayed harder, I should have cooked healthier foods....  There seems to be so much that I could have done better... ESPECIALLY with the ASD diagnosis. 
It is widely understood and stressed that the MOST IMPORTANT THING YOU CAN DO is EARLY INTEVENTION - the stress is upon that small window of neural plasticity that could provide your child with the just right activity/ input/ environment that will make it better, maybe even way better.  The weight of finding and executing that "just right" thing is pretty heavy (since you need to fine the thing that matches your child's chemistry and distinct kind of  autism with the therapy or diet that actually creates an impact); the doubts that surround every minute decision (from diaper brands to laundry detergents to foods to reading to...) can be overwhelming.  The ONLY best advice/ practice to be found is to "follow your own motherly instinct", to use your "mommy radar". 
Damn.  That is hard.  Where is the line between confidence and arrogance?  How many mothers have been dismissed throughout time for being too concerned, too protective, too agitated, too emotional? As new mothers we get that line from our parents and doctors that whole first year with the first kid. Where are the lines between indulging/ spoiling the child and bolstering the child?  There are snide comments in public places (grocery stores, etc.), snide comments at family gatherings, open interventions by well-meaning family & friends, and the oppressive weight of knowing that no matter how hard you try there are no instruction manuals, no reset buttons... you will NOT get it all right, and then you will have to try to heal the hurt you created. 
I honestly try to not pass on my own insecurities, to not ask my children to unconsciously live my dreams, to not ask them to deny their inner promptings, but I also know that I have already planted the seeds of self-doubt and loathing that will burden them, forever.  So how do you know if you are projecting your fears and weaknesses onto your child?  What if it's really that I just don't like who my child is?  One of my children is very aware that ASD is a DISability, a handicap, an excuse, a reason to be uncontrollably different.  The bullying from school combined with what ever seeds had already been planted started those statements of self-loathing and death wishes by the age of 7.  My other child is VERY strong willed (could be interpreted as ASD) - and has inadvertently elicited frustrated name-calling and intense discipline from me and other family members, by the age of 5. 

My failure has already happened.

I know that I need to "shake it", to practice my own "positive" thoughts, to see the "strengths psychology" I seek, to heal the hurts that I have already caused.  I need to find the place where I can still believe in my own motherly instinct, without questioning my selfishness at seeking integrity to myself.  I need to forgive me, and renew my confidence, but the price seems SOOOOO costly.  It's not just my life anymore... my actions effect how my children view themselves, and society's expectations upon them. I run the risk of breaking what God has made Holy in them, of crushing their wills, or breaking their creativity, or denying their Gifts.  They all seem like risks too big to take.

Same old story, new singer. And I will have to find the same answers that generations have found - faith, hope, love - and make them our own.