Obi-Wan, You're Our Only Hope!

Breaking out my best Leia impression and mustering up my calmest, least snarkiest, most empowering, annoyed, sarcastic tone for this post.  Carrie Fisher take the wheel...

I came across this article this morning.... And usually I swipe on by because, frankly, unless it's a fellow mom - I don't much care. Most blurbs about autism are full of stats that came in the disheveled, half torn, half chewed, droll covered, wine soaked, and smeared "handbook" that comes with a new diagnosis.  Some are all about miracle cures up to and including bleach cocktails.  Many are, indirectly, stating that death from some horrible disease is a more fortunate fate than the "disorder" that my child lives with on a daily basis.  And the damned comments.  Cripes, people.  What THE ACTUAL FUCK is wrong with those people?

This morning I was feeling froggy.  It was a local article doing some Q&A with some new therapist with some new practice touting its success with bridging gaps between ASD kids and educators.

She's the Autism Whisperer.

We are saved.

Maaaaaybe I'm cynical.  Maaaaaybe this isn't the week.  I'm frustrated with our school system, again.  Maybe I'm pissed off that some dillhole community group page leader deleted my query looking for other kids that share the same interests as my son because she doesn't know how to read.  Maybe it's all the things.  All of them.  Maybe.

But she uses the most cringeworthy line I can think of - "We have hope."

Are you fuuuuuuuuuucking serious?  "Hope".  We have "hope".

What does that mean exactly?

We ran out of cheese, milk, bread, eggs, and peanut butter - but we have "HOPE!"

Congratulations, Spectrum Families - WE HAVE HOPE!!! HOPE HAS ARRIVED AND JUST IN THE NICK OF TIME!

Rejoice!

Plenty of hope to go around!  Form a line!

As if "Hope" has arms and legs, a pulse, shoulder length hair pulled back in a conservative, low bun, tortoise shell glasses, sensible shoes, and wears just the right amount of perfume.  She has her arms crossed and sleeves up and she's ready to kick some ass and take some names.

This is what people say that don't know what else to say.

This irritates me.  Obviously.

No shit we have hope.

Thanks lady.

I hope to win the lottery but that doesn't pay my bills.

That sounds dismal.  That sounds like everything else has failed and this is all that we have left.  Our Hope™.

Come back when you have Solutions.

Not solutions to the Autism puzzle but solutions to help make their lives the way they want them.  Encourage independence when possible.  Connect those in need with resources.  Help us advocate for our children.  Educate the public.  Foster compassion.

And for all that is good and holy in this world can we just get through a school year without having to ask a teacher to read the IEP?  Maybe attend a party where we aren't a sideshow?  Kid first, Autism second.  Please?

Keep the hope for World Peace, that the Kardashian's will quietly retire to some remote island with no social media, and maybe fat free cheesecake that tastes just like the real thing.

Somewhere Over the Rainbow

A little over a year ago, I began to have some serious concerns about my, then, 9 year old son.  I butted heads with his teachers and eventually removed him from his conventional brick and mortar school.  He was not thriving in any way.  My gifted little boy, who could read just about anything you put in front of him, was failing every subject.  He couldn't make a friend to save his life.  He was as blunt as a 2 x 4 to the back of the head.  He was drowning and it was the only thing I could think of to help him.

Within months of attending an online school, his teacher made a very difficult phone call to me.  She was concerned that there was something much deeper going on.  She offered to help me get him on the right track and suggested we consult his physician.  His doctor is the most amazing woman, so easy to talk to.  She reminded me of a similar conversation that we'd had about 2 years ago.  He has issues with effective social skills.  She asked me to follow up with her if that didn't remedy itself.  At this point, she asked me to complete an assessment and return it to her.  His teacher filled one out also.  Rather than scheduling a follow up appointment, his doctor called me to refer us to the local Children's Hospital to help pinpoint what was going on.  She immediately dismissed ADD or ADHD.

A few weeks went by before I heard from the referral nurse.  And when I did, she proffered up a word that I wasn't anticipating: "Autism".  But, he can talk and function.  Isn't Autism where they are low functioning?  I've met a few Autistics here and there and The Middle Son is really nothing like them.  Not that he's "better" or anything.  Just not what *I* thought of when I thought of Autism.  She explained to me, very lightly, what "Asperger's Syndrome" is.  High functioning Autism.  She recommended we get to a therapist quickly.  The earlier the diagnosis, the better.  He's NINE.  How is this just now on the table?  He's worked with a therapist before, shouldn't this have been caught by now?  Surely, he is not Autistic.  I have to say, I was reeling.  Confused, scared, shocked, worried, speechless, curious.  I think I even laughed a little.  But, we got appointments scheduled.  Then we hung up.  15 minutes ago, life was totally different.

I began to research.  And research some more.  And then, there was some more.  The more I read, the more I cried.  Pretty sure that I sat here, for hours, with tears streaming down my face.  Not tears of sadness.  Relief.  Realizations.  MY KID ISN'T AN ASSHOLE!  (Every Aspie parent has that initial fear that their child is just a jerk, at some point in the diagnostic process)  Suddenly, 9 years all made perfect sense.  These signs have been there for so long.  But they got buried.  Divorce, moving, anxiety about schools, 2 more siblings.  We just kind of thought he was having adjustment issues.  Well, no shit.

He has a wonderful therapist.  She's fun, sharp as a tack, and relates to him.  She doesn't dilute his therapy.  Initially, we didn't mention the "A" word.  Then, he hacked Disney's gaming site.  Here he is, at 10, developing and creating video games.  Learning some programming code.  Taking to it like a duck to water.  But ask the kid to tie his shoes.  He can give you a detailed history of Godzilla.  When I say "detailed" I mean EVERYTHING. A few weeks ago, I filled out another set of forms.  If I had doubts about his diagnosis - I didn't after that.  28/30 spaces checked in the affirmative.  Absurdly high vocabulary.  Has anxiety walking down certain types of stairs.  Can't stand denim jeans.  Has no understanding whatsoever of the concept of other people's feelings.  There's no filter on what comes out of his mouth.  He can smell what neighbors 2 streets over are cooking.  Things taste very strong.  Sounds are really loud.  Lights can be very bright.  When that all gets to be too much - the punching ensues.  Not directed at me or anyone else.  Just himself.

So, just before Christmas, we got the official Welcome Kit to the world of Autism Spectrum Disorder.  What a difference a year can make.  All of a sudden, I want to make this place more understanding for him.  But there's a balance I haven't quite figured out yet.  He can't go through life thinking that he can just drift without consequence.  Armed with an official diagnosis, I placed him back in a public school.  We will see how it goes.

One day, my son was an average boy, on an average street, doing average things.  The next day, he's Autistic.  It knocks you back a few ticks. Thinking back to all the things you punished him for that were his condition breaking the surface.  This is probably where having a schizophrenic biological mother comes in handy.  She can't ever shut off her hallucinations, her eccentricities, or her symptoms.  She is no more responsible for her conversations with the Planter's Peanut Guy than I am.  That's something I learned a loooooooooooong time ago.  Maybe it was a way to prepare me for raising an Aspie.  I don't get offended anymore when he looks through me when I'm being emotional.  I'm a lot more patient when he needs a few extra minutes to make it down the steps.  He has taught me a lot about life in the last year.  Slightly scared/nervous/excited/proud to see where it goes from here.

Because hitting people is unacceptable

Our 9 year old, gifted son is having difficulty in school.  Last year he was being picked on relentlessly by other students.  This year, he has a personality conflict with a particular teacher after he rolled his eyes at a homework assignment.  I attended a meeting with his principal and teachers to discuss an incident where The Middle Boy was removed from class for telling the teacher that "[he'd] be able to see the board better if she moved her arm".  He lacks social skills almost entirely.  He has a very blunt, direct, broadsword way when it comes to communication.  (I have no idea where that comes from).  His educators agreed that they would have him meet with a Gifted Student counselor as this is a common trait among children with higher intelligence.  This is not an excuse for this comment.  But clearly, he has needs that surpass his understanding.  It's easy to forget that even though he has the intelligence of a teenager, he has the maturity level of a 9 year old.  The two parts of him did not develop at the same rate.  Throwing him out of the classroom without explaining what he did wrong when he clearly didn't understand the issue doesn't exactly teach him anything.  There was no connection made between cause and effect.  He followed instructions and left the class without argument.  The teacher informed me that she consulted the superintendent prior to meeting with me to make sure she was not in any trouble with the way she handled the situation. 

During my meeting the teacher told me "This may not be politically correct for me to say but my life would be so much easier if you withdrew him from this school."  I appreciate the jobs that teachers do.  They put up with so much and work so hard.  But the parent in me had to refrain from physical violence.  I nodded and smiled and participated in the conversation as a grown up should.  Then I came home, had some time to think, and wrote this letter to the teacher and principal: 

First, I want to thank you for your time and efforts over the last few months with our son.  Teachers don’t get nearly enough credit for the amazing jobs that they do.  After we met Tuesday morning, I came home, discussed the meeting with his father, and had time to reflect on the conversation.  We’ve spent several hours talking and I’d like to take this opportunity to share with you the thoughts and conclusions to which we came.  I apologize for the delay in sending this – our household has been suffering from an incredible cold. 

Since the beginning of the school year my husband and/or I have met, in person, 3 times.  We have had several phone calls as well.  One trend we noticed was the continued reference to the “eye roll” that occurred in the first few days of school, literally each visit and all but one call.  It is our belief that this incident has become a catalyst for the rift between teacher and student.  We feel that it has been taken as a personal slight that seems to be one which there is no recovery.  While we do not condone [The Middle Son] behavior in any way, shape, or form we also do not feel that this poor choice on his part should continue to be an issue two months later.  From that point on, the personality clash between you and [The Middle Son] has grown considerably.  We feel that this has amplified everything  [The Middle Son] has done from that point forward.  The old adage that “you never get a second chance to make a first impression” has a great deal of truth in it.  It also bars it’s adherents to a place where forgiveness is impossible.   Thus, teaching both parties nothing of interpersonal growth. 

You stated to me that [The Middle Son] is the only student that you do not have a connection with out of the entire class.  You also stated to me that your life would be easier if I withdrew [The Middle Son] from school.  These confessions weighed heavily on me, as a parent.  This situation promotes further social detachment.  Children are sponges, as you know.  They are intuitive, sensitive, keen observers.  When they witness, whether verbal or non verbal, an adult authority figure disconnect from something they have a tendency to follow suit.  [The Middle Son] has an already difficult time with making friends.  I have to wonder if your indirect/non verbal indifference to him is not being picked up on and harbored by the other students.  I’m not sure it’s really possible for him to be more emotionally isolated than he already is.  I fail to see how this is helping him develop social skills.  Being an outcast is not a skill one strives to accomplish.  No child, including [The Middle Son], wants to be disliked.  You mentioned that you had difficulty sleeping in anxiety over the meeting and can’t stand the thought of not being liked.  Well, that’s every moment of school for our son.  I won’t deny that he bears responsibility for that fact.  I will also reaffirm my belief he’s not cognizant of it.  This is not an atmosphere where learning can be fostered.  There are means to correct his rudeness.  There are not means to make you care.  There was much talk of his lack of empathy.  There was none expressed for him, either. 

We feel very adamantly that parents and teachers should be allies in pursuit of academic achievement.  When a teacher, a person we are to trust with our child’s life, expresses indifference for that child – well, to be honest – it does not provide motivation to continue that alliance.  It carries the same weight as stating that you do not care.  That is not acceptable.  He is not just part of your job.  He is a person.  I cannot imagine how that would motivate him in his studies or to be respectful, if he knew.  Something tells me, he already does. 

Our extended family and circle of friends include numerous teachers and administrators in and out of the district.  Of the people we spoke to about the meeting and its outcome, all were flabbergasted by this statement.  Never have I heard any of them say this in casual conversation about their students, let alone to a parent that they are supposed to work with on a regular basis.  Imagine if your spouse, child, parent, family member or friend told you that their life would be easier if you weren’t there.  The relationship between teacher and student is just as important to a child. 

I have several thousand clients at once.  Some have simple cases – cut & dry and finished in 9 months.  Some have time consuming, intricate plans that require detailed work that takes up to 5 years to complete.  Sometimes one person’s case can rearrange my entire day and night (including my family and home life).  I cannot imagine feeling or expressing indifference for any of them, especially to them.  It’s counterproductive, not to mention unprofessional.  In all fairness, maybe it was a simple case of miscommunication with unintended implications. If that’s so, then perhaps the same consideration should be given to a struggling 9 year old boy.  However, any doubts we had about our decision to pursue the [deleted for safety] have been extinguished. /end

 

I received an apology from the principal where she explained that the teacher was trying to tell me that she wanted [The Middle Son] to stay in this school.  She just chose the wrong words.  

yeah.  And I'm the Queen of England.  Either way, we have begun the process of enrolling him into an alternative educational program endorsed by the Ohio Association of Gifted Children.  Hopefully, this will put him on the path toward the greatness he is destined for and not one with tragic results.