Another One Rides the Bus

This is the email I sent to our superintendent regarding some Autism fun on the bus.  

Dear Superintendent,

On or around November 5, 2015 an evacuation drill was performed on Bus [00] that included rear evacuation procedures.  My son, [The Middle Son], a 7^th grade student at [Your] Middle School was on the bus and participated in said drill.  [The Middle Son] has Autism.  During this drill, he fell from the back of the bus and injured his knee.  [The Middle Son] struggles with depth perception and has difficulty with steps.  Students laughed at him.  No one assisted him in his exit.  He was certainly the laughingstock.  No one attempted to address the silver dollar sized, bleeding scrape to his knee.  He was wearing shorts that day and there was a substantial amount of blood in his sock when he got home.  It was noticed by a teacher later in the day.  Still, not so much as a bandage was administered.

 

When I got home from work, I noticed the injury and cleaned and bandaged it.  On Saturday, he fell at home and broke the scab.  We continued to clean it and monitor it but it started to show signs of infection.  On Monday, November 9, 2015, I received a telephone call from the school nurse.  I was chastised for the wound and its care.  She explained that she was able to clean it up and apply another bandage.  My next telephone call was to Mrs. [Principal].  I explained what went on to that point.  She assured me that she would call the transportation department and see what she could find out.  I was then told that I would receive a call back.  It is now ten days later.  I was told on Monday, November 16, 2015 by Mr. [Principal], during our annual IEP meeting that the bus driver did not know of [The Middle Son]’s diagnosis and that they do now.  This is my “assurance” of my son’s safety during future drills or a real life emergency.  This is not acceptable. 

[The Middle Son] has attended [Your] schools since kindergarten.  He did take a brief hiatus during half of 4^th and 5^th grades and attended an online school as there were extreme difficulties with staff at [Your] Elementary school.  Upon his return to the district, a diagnosis of Autism Spectrum Disorder was presented with his enrollment documents.  It was actually required before they would complete his admission.  I would go into the 6 months that it took for the district to start preparing his IEP after I requested it, the 3 years it took for his Gifted services to begin because they were “overlooked”, the being told that “we would rather other students think he’s just ‘quirky’” rather than let him explain his Autism, but those are complaints for another day.  The bottom line is that [The Middle Son], his diagnosis and needs are not unfamiliar to the district by any means.  Also, bus forms were filled out stating his diagnosis. 

Section B of 3301-83-15 of the ORC “Emergency and evacuation procedures” states that “The superintendent or designee shall organize and conduct three emergency exit drills for all students who ride buses to and from school”.  It also states in (B) (2) that all drills shall be arranged and scheduled by the transportation director/supervisor in cooperation with building principals.  The drills shall be supervised by at least one staff person other than the driver assigned to that route.  I was told that there were two staff people at the time of the drill.  Section (B) (7) states that Emergency evacuation drills of preschool and special needs children may require modification of the procedures listed in paragraph (B). 

  

In the Ohio Preservice School Bus Driver Training Manual, pages 81-84 covering Emergency Drills and Evacuations – it is suggested that a “buddy” be assigned for special needs students.  A helping hand support method for rear door evacuations is also suggested.  Following these suggestions could have spared an injury.  I would expect a scraped knee during an actual emergency.  Honestly, I would welcome that over severe injury sustained during a fire, accident, or other disaster.  But this was not an emergency.  This was preparedness.  The driver was not prepared and, somehow, lacked essential knowledge to effectively ensure the safety of a student with special needs.  The school failed to properly communicate and coordinate with the transportation staff to accommodate a student. 

I take comfort in knowing that this could have been much worse and that now the staff and [The Middle Son] are more prepared in the event of an emergency.  What bothers me is the blasé attitude about informing me of what measures were taken to assure his safety during another drill, returning a phone call, and addressing an injury that required medical attention.  Has someone actually apologized to my child?  He is a student that struggles with social propriety and we use as many opportunities to teach good manners as possible.  All that I received was two spoken sentences during an IEP meeting.  Is this the norm for all students in the district with special needs?  Is this part of the reason that [Your School District] has received a “C” rating on servicing students with disabilities?  What is being done to remedy that?  What is the barrier here for touching base with a parent who expressed concern for their child?  What can be expected for [The Middle Son] and other students like him when it comes to bus safety? 

Thank you for your time,

Angry Momma Bear

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.

The Rainbow Connection

So here we are, almost a year later, riding the waves of  ROYGBIV.  And what a roller coaster it's been.  In some ways this is a vent session.  In some ways this is a pity party.  In some way it's meant to inspire.  I don't know.  I just watched a few episodes of Parenthood at the behest of some co-workers and there's so much that I feel like I'm going to have my own meltdown.

First - what is that like?  That moment when there were 2 parents sitting there, in a therapists office, holding hands supportively as they absorb the news that their child has Asperger's.  WHAT IS THAT LIKE?  You mean to tell me that there are families out there where that actually happens?  Lemme get this straight - not everyone sits there alone to hear the news, goes home to handle the symptoms of it alone, holds their child down from a fit of self abuse alone, goes to every therapy session alone, meets with IEP teams alone, bears the stares alone, and otherwise handles every single ASD related issue alone?  Really?  What's that like?  I've had good friends complement my strength.  I've had family offer to correct his behavior for me.  I've had people listen to me vent.  But not one person has ever held my hand and reassured me that I can get him through this.  And only recently has this even mattered to me.  Sometimes, my knees start to shake and I second guess whether or not I can handle it even though I *know* I can handle it.  And these teachers!  Okay, this one teacher.  She feels the need to win out over an 11 year old with Autism in a power struggle.  I worry about this alone.  Sure, I get those comforting "awww" sounds or "WOW's".  And no one knows what to say and I don't know what I want to hear but for like 11 minutes I would love it if I didn't feel like the Autism world was on my shoulders.  Or the support system where I didn't have to choose between The Middle Son's therapy or The Youngest Boy's soccer practice.

Every time I have to take part of my day off of work to handle one of these issues I get to feel like shit.  Like I'm judged for taking time off to go play.  There are days where I'd GLADLY trade places.  I want to scream and ask what the hell they are so jealous of - a special needs kid?  Being a single mother?  Being the single mom of a special needs kid?  WTF?  I'd rather be at work.  Sometimes I'd rather my child get through life without additional obstacles of a processing disorder.  I can't imagine what would drive people to get upset at me for taking care of my child.  My children are my reason for working.  Not whoever is on the other side of the cubicle or whose wallet I'm bulking.  How do I get picked out of the group to be the scapegoat for why time off has to be approved?

And Class Dojo can so totally go eff off.  Every single day there are these reminders that his math teacher doesn't understand Autism.  I've offered educational materials to aid the teachers in their understanding of the fundamentals of ASD.  And I sit there, corrected, while I listen to a table full of people give me a laundry list of the kids they know that have ADD or ADHD.  Part of me remains calm because I know it's the only thing that they have to relate The Middle Son to in their heads.  Part of me wants to hit them because there is very little to nothing that connects Attention Deficit to the Spectrum.  We all have struggles whether are kids are NT or ADD or ASD.  But we do have to recognize that each is an individual beast.  Then I hear how disorganized he is because he doesn't fit the cookie cutter kid mold.  Then he's unprepared because he has the short term memory of Dory the fish.  GOD FORBID they allow him to return to the previous classroom to retrieve materials because then the whole class would want to do it.  I'm so tired of the pressure of getting all "green" today.  The Middle Son couldn't really care less and it's really his feelings that matter but it's so difficult to keep that in mind.  When the "1" lights up on the Dojo app - I know it's The Middle Son and I know it's because he didn't do his homework or didn't want to staple a paper or is disorganized or is unprepared.  I want to cry.  I know my child is different.  He's 11.  I think I've caught on.  And I want to have the teacher's back but I really would prefer to scream.  He's not going to change.  All the Thumbs Up and Thumbs Down in the world will not make that any different.  That new "-1" isn't going to be the miracle.  So stop, please.  Just stop.  This is the equivalent of a "-1" to a wheel chair bound child for still not running the track today.  And tomorrow.  And Wednesday.

It's really all okay because at the end of the frustrating days where my heart hurts there's an occasional "I love you, Mom" and "I'm glad that I have you" and a "You're the best mom ever".  And all of those things are so much easier to bear and I'm reminded of the importance of what I do and I'm blessed enough to get those accolades all to myself.

And I said, Goodbye to You.....

With every passing year, there is a brief time of reflection (about 3 days before NY and maybe 5 days after) on what transpired in those preceding months.  Then, we prepare to dive, head first, into a fresh, new calendar.  365 unwritten pages.  For me, this has been a pretty limit testing/rewarding year.  I'm looking forward, gratefully, to the next 8,760 hours.

2013 opened my eyes in so many ways.  There have been lots of superficial things that have made me think and made me smile or hurt my heart and made me cry (entirely more happiness over pain).  And I take with me into 2014 and beyond, the wisdom from those grins and sobs.  I'm also packing the enlightenment of anger.  I'm pretty sure I can title 2013 as "The Year I Was Really Pissed Off".  However, looking for the soft, gooey center of all that petulance was the clarity that followed.  I generally go out of my way to avoid being mad.  It took a long time to let go of the baggage of things that happened when I was little and I think I overcompensated.  I undervalued the benefits of this less than pleasant emotion.  It provides motivation to get a lot of things done.  It got me through the hardest parts of the year.  Thank you, Fury, I owe you one, but it's time to put you back into the holster.  I promise I won't let you get dusty.

Milestones were bittersweet.  The Oldest started driving lessons.  Very little actually scares me.  Except something happening to one of my children.  It's a Craven/Shelley/King/Lovecraft/Poe/Manson/Bieber compilation of thought.  My child operating a vehicle is terrifying.  There was an intermission, though.  For close to a month, he was unable to move much.  Not sure which incites more trepidation - car accidents or surgical procedures.  We spent about a week together in a small room in Cincinnati.  Just staring at each other.  His mole is gone.  But scars now reside in it's place.  And we learned so much about skin grafts.  And the courage inside of my amazing son.  He made the difficult choice to go through this painful surgery to avoid an uncertain future.  (This is my side note vent at Melissa Etheridge, an avid reader of my blog: FUCK YOU LADY.  It takes a lot of guts to take a preventative step to avoid cancer.  Sure, you were talking to Angelina Jolie.  But you were kicking dirt in the faces of those who make similar choices to control a potentially life threatening and volatile disease.  You made a different choice and it worked out, because you're still here.  Good for you, that doesn't make you Queen Shit of Cancer.)  His determination paid off.  "Benign" is my new favorite word.  Then the little shit went and became a senior in high school.  Not my little baby anymore.  2014 brings with it a graduation party and the big "18".

Soccer-mom-hood hit with a vengeance.  The Youngest Boy discovered sports and loves it.  I, of course, found a love for being a mom on the sideline.  Cheering, quashing my internal loudmouthed Bitch, learning how to work a double elimination tournament bracket.  Watching his fall team rock an undefeated season, bring home medals and trophies - made me really proud.  His commitment to teamwork is pretty awesome.  And, I didn't punch anyone!  He is also reading well above his grade level.  This pride comes with us.  Soccer can stay too.  (12 more days until indoor winter season starts)  It's inspiring Miss Mini-Me.  She packs a little backpack full of things to do during practices and games.  She roots her brothers team on and plays with him at home too.  There's a large net folded under my china closet, 2 small nets on the patio, a stockpile of cones in the living room, and this morning I tripped over his newest soccer ball.  This is a result of their friendship (even though I am preeeeeeety sure she slapped him a few times).

I gained a new respect for the teaching profession.  Teaching The Middle Son at home has been very taxing on the soul.  Saluting all the teachers out there, high!  I have to know my own limits, though.  The silver lining of this experience is that had it not happened, it would've taken a lot longer to get a diagnosis.  We needed this.  Next week, he will rejoin society and public school.  Fortunately, I'm only seconds away.  It's going to be interesting and exciting.  While I won't let him sink completely I'm also going to be letting him do a lot of his own swimming.  I won't be around forever and Autism isn't the end of the world.  He's high functioning and he's not going to adapt if I shield him.  Advocate, not shelter.  So I need to put the strength from the last year into my carry on luggage.

For me, the resolutions I've set for myself are cliche.  Eat better, take better care of myself, workout more, increase my volunteer hours, and write.  Usually, they are silly and easily attainable.  Though, I blew the "I won't say 'farfegnugen'" resolution of 2011 within the first 2 weeks.  I am going to throw in a "I won't operate a shopping cart faster than 2 mph" for 2014.  And maybe a "I won't flip my neighbor off" (not the ones immediately on both sides, more like the ones across the street and 2 doors down on the left and 3 down on the right).  I might do something reckless, too - trim my hair, wear pink (I hate pink), shoot a gun (I hate guns), beat ZombieU, and get arrested for Public Intox at a high school graduation.

I wish the best for everyone reading this.  While my follower list is quite small and consists of a handful of friends, this blog did cross the 4000 hit mark a few weeks ago and I got my first writer's paycheck.  The hit count means a lot to me.  It means that you're here on purpose.  So, thank you.    Go do something fun tonight and try not to end up in jail.

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.