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

dragon pups

dragon pups

Wednesday, December 11, 2013

the Bigger Autism Picture

I'm gonna cover a LOT of ground here, so stick with me people...

Autism Speaks has lost its credibility with the Autistic Community.  Those adults on the Spectrum who have found their voices are adamant that Autism Speaks does NOT speak for them.  The heart of the argument is around a single ad - a message from the director of Autism Speaks that focuses on how bad it is to live with Autism.  

This outlook, of Autism as "bad", is the core of the "seeking a cure" mission of Autism Speaks - a mission that all Autistic adults active in public discourse find repulsive, insulting and threatening.  (Note that this cannot inherently include those "low-functioning" adults who are not active in public discourse.)  The argument from Autistic adults is that Autism is NOT separable from their identity.

Here are my insights:

EVERYONE, on all and any sides of any discussion about Autism advocate that the MOST IMPORTANT thing an autistic person needs is EARLY INTERVENTION.

Certainly, the medical community identifies Autism as a tragic condition, and it is a fight to get a diagnosis because doctors are so loathe to weight a child with the finality and terminality it carries in the medical field.  By medical criteria, we are dealing with an incurable condition.  Historically that diagnosis has meant institutionalization because the "victim" is a total dependent.  

So once you finally get the diagnosis, there is HUGE amounts of pressure to make up for all the time you've already lost getting that diagnosis so that you can intervene as early as possible.

Now the debate becomes not IF the patient is sick, but WHICH therapies will be effective with the patient.  A long process of trial and error begins.  Everybody chimes in with their expertise.  The Neuro will advocate from their perspective, the OT will advocate from their perspective, the Speech Pathologist will advocate from their perspective, the Psychologist will advocate from their perspective, the Teachers will speak from their experience, the Old Ladies will suggest from their... accumulated wisdom.  If you are very lucky, someone will finally send you the the Developmental Pediatrician who will try to tie all of these perspectives together.  And not all these people will agree with each other.  You will receive LOTS of conflicting information.

And the parent is trapped in a vortex of insanity.

Ultimately, it is the parent who will be the trigger on all this.  All these experts will make their suggestions based on the accumulated observations of the parents.  And the effectiveness of any strategies is entirely contingent upon the parents' willingness and ability to follow thru with the act.  The effectiveness of a therapy will be determined by the parents' observations. Solicited and unsolicited advice will bombard.  Comparisons will be sought in an effort to define through the confusion.  And there will be LOTS of people who provide you all kinds of resources to help you.  The medical establishment knows it has set up this vortex of confusion, so it will tell you to find a parent group.  The educational establishment will try to make you "part of the team" in the IEP process, to greater or lesser success depending on your locality.

Everybody KNOWS you are overwhelmed, so the next thing you'll be pressured to do is "get services", apply for "the waiver".  You'll be connected to an advocate group that will "walk you through" that process.  The idea here is that your kiddo is DISabled, so they ARE entitled to what ever they need to be successful.  Everything from in home therapy, to the hardware of the therapists, to respite caregivers in your home.  Everyone will tell you, you NEED this!!  And they are here to help you get it.  

The very FIRST thing that any advocate group will tell you is to be prepared to fight.  As you start looking at others' stories, trying to come to grips with which of the various outcomes and realities might possibly apply to your situation, you will see LOTS of verbiage about warriors and difficulties and legal rights.  The first thing you find out is that you are gonna be fighting up hill "the rest of your life".  The doctors want to "fix", so you will search and search for the "fix" that works.  The teachers want to "improve", so you keep trying to meet that measurement.

And the very SECOND thing that advocate will tell you: only list the deficits.  You are trying to convince the government that your child is DISabled, UNabled.  Sure, you may have seen growth in your child in the past 3 months, but be sure you tell the social worker about how far behind your kid is on "milestones".  As fellow parents, we celebrate that your kid only ate grass 3 times this week instead of seven, or that the obsession topic is slowly broadening, but you need to make sure that the social worker knows that 95% of the words that come out of your child's mouth are lines from movies - don't mention that they were relevant to the discussion they were used in. 

And then comes the big quiet admission.  Filing for "the waiver" or "disability" really is an admission that your child needs institutionalization, and you are asking to meet that need in the home.  Some advocates will be vehement that they are NOT allowed to ask you that, but most parents will admit that they were asked exactly that, and those that said no were denied...

The other route to those services is through the educational system.  Ideally (and in some places) those 2 systems work together, with the school using the resources of social security to pay for the aides and equipment your child uses in the school and at home.  But they are NOT the same systems.  Docs who who work in the school system are no longer practicing docs, they are references for the school - they can label, but they cannot diagnose.  But the school will tell you they their experts are better - "they know children better" - because they have to be sure their expert is an expert.  

The school is required to keep you informed, to let you be "a part of the team" through the IEP process, but it is a process, by committee, and it means that your voice is inherently outnumbered by the educational experts on the committee, and decision making is slow.  So they will press you to rush to action since committees are inherently slow.  If you are incredibly lucky, your IEP team will work together well, and your wishes will match theirs, and things will be awesome - you won't need that medical stuff anyway (until they are 18 years old).  

But luck does not run high in this pursuit.  The vast majority of parents find that at some point they are bullied into signing the IEP so that the desperate teachers can do *something*, *anything* to help your child, because what is going on is unmanageable, and they can't make changes without a committee meeting.  The experts on the IEP team are threatened by each other (politics playing out in their system), so an informed parent is a threat too.  They cannot afford to lose face in front of each other by letting you "run" the meeting.  Worse you may have been so thorough in your research that you threaten their "expertise", and now they fight to retain a shred of their professionalism.  If you are REALLY unlucky, you'll be dealing with a systemic culture where this need to prove expertise underlies every meeting and the IEP players will come into the process on the defensive - and make you feel like your small limited knowledge of just one case is inconsequential.

SO you do "whatever it takes!"  - because you are the parent, the grown-up, the warrior, the protector.  Those early interventions are the BEST CHANCE you have of giving your child the slimmest possibility that they will be able to function just well enough to avoid that institutionalized "group home" in 18 - 16 years...

Under these circumstances, you can see why it is difficult to "celebrate" the successes, to see the "gifts" of Autism.  It is clear that Autism IS in fact a burden - and it gets carried around everywhere, because there are therapists, and respite caregivers, and caring teachers, and designated aides, and judging neighbors EVERYWHERE.  It is desperately obvious in your child's gait, flapping hands, vocal stimming, sensory sensitive clothes, fidget toys... this kid is ... "special".

So you buy into your own hype.  You tell the social worker the worst.  You celebrate with the therapists, but not too much or their job will be "done".  You cry when the rude people in line at the store make comments.  You research like mad, and then gird yourself for IEP meetings.  You read as many blogs as possible to try to work with the school staff more effectively.  You observe very closely, trying to figure out EXACTLY what environmental sensory experience triggered the overload.  You manage the daily environment and routine to create "functionality" for your child.  That's your JOB. 

You dwell in that place of bleak hope, and wear yourself out meeting all those expectations.

You work so VERY VERY hard to connect with your child, to come into their world, to "figure it out"...

And then you find that community of Autistic adults who are saying that all these therapies are a punishment.  You find a group of parent bloggers who are saying that Autism is a window into the future, a new humanity.  You finally look at the remnants of your couch one day and think, "REALLY?!?!?!?!?!?  THIS is the BEST it can be?!"

And then you look at your kid, pacing the floor thru the 780th consecutive daily showing of the same episode of Thomas, and you see with your heart.  You realize that you have a choice.

Either I can look at where we are and look backwards, or I can look at where we are and look forwards...

And THEN you realize that the secret is... you have to start by looking at where you are...

Once you start listening to your heart instead of your fears, you know that you CAN connect with your kid - you HAVE BEEN connecting with them.  You have had instincts driving you this whole time to do exactly what needed to be done - and you were overridden by the "experts" and your guilt.

The first time you realize that Disney movie lines out of context really DO effectively communicate what he'd like for dinner, or that the arrangement of the shoes actually looks like continents, or that she brought you her favorite security object because you were sick... THEN you start to TRUST those instincts.

And it builds over time.  You allow yourself to watch more closely, to fall into their rhythms... you start to actually meet in the middle, not just wait for your child to come on over...

Then you can actually start to understand the adult Autistics, and the blogging parents who blow sunshine up everybody's butts.  You DO have a choice about whether is a DISability or a DIFFERENTability.  You start to see how a "cure" would deprive your kid of the creativity they found in mashing up Dora with National Geographic.  You start to see the secret genius of obsession with minutia.  You start deciding that there are roses, not just thorns...

And it DOES become a larger spiritual question.  Am I going to seek the Good over the Bad?  Am I going to value the intention over the delivery?  Am I going to listen or demand? 

Will I have faith that everything happens for a reason?  Or will I accept success only on MY terms?

Once you see the awesomeness that had been hiding behind the tragedy, once you focus on the loving child inside all that struggle, change starts to happen.  Maybe your perspective changes, so you can accept different as equal.  Maybe the kid actually develops better because they know they are loved.  Probably both happen.  The sum becomes greater than the parts, and fabulousness happens...

It isn't a "miracle cure".  The world is not "suddenly changed", except that it is...  Everything is not "just put back to rights", except that it is...  The hardships continue, except that they get easier...

And now comes the part where I have to "prove" to you that my kid is autistic "enough" for my insights to be valid... where you who are walking through the depths of these Early Interventions can find that shred of similarity that lets you believe that my experience can be reflective of yours...  where those Autistic adults can measure whether or not my kid "qualifies" to be a part of their community... where I can commiserate with others who have been to the ER for poison mushrooms, or spent un-spare pennies on sensory tools, or have learned what it is to be insulted in "dinosaur"... where we can all admit how tired we are, of ALL of it...

But I am not going to, because THIS day I am making a choice. I am walking through a door.  My child's story is HIS own.  He will tell it in his best fashion.  I am his mother, his teacher, his coach, his friend... I will play my part in his story...

But I have my OWN story - the one I am living.  It includes my kids, my family, and the Work God Has Created Me For...

You will read this and know it is True for you too, or you will read this and know you are not here... and the words will find you again when you get here.

Rest assured, that Autism is a gift, a unique path, a piece of the Master Puzzle - and it WILL all fit together correctly, eventually.

...and you need to get really good at eaves dropping and observing, buddy...

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