Autism: The Truth Rarely Mentioned

Blog 52

Road weary from the ride to Disney and hungrier than I can ever remember being as an adult, our party of six quickly descended upon the closest restaurant we could find near our hotel.  We were fresh off the road, a nearly three hour drive mixed in with the joy of Los Angeles traffic, when we finally sat down at the corner table. I had not been sitting for long when I noticed all twelve of them sitting at the table beside us.  They were noisy, as any large group would be, but it was more than their noise that caught my attention.

The Table of Twelve was familiar to me and, at one time in my life, they had been my people.

I will freely admit I am not quite old but I am not excessively young either.  I am thankfully old enough to be well seasoned and wisened by my years.  I have taken an adventuring path that has not always journeyed me through the easier avenues and, more often than not, I have opted for the road less traveled while keeping an open mind and sharp eyes.  I miss nothing so it didn’t surprise me one bit how quickly my attention was fixed on the Table of Twelve.

Sitting next to my boy and looking at the Table of Twelve, I could feel two worlds colliding without any warning and I could feel my heart rising up in my chest and crawling hard into my throat because life was, without warning, closing in on me a little too tight.  The life that once was was coming face to face with the life that could have been and, at Disney, it was more than I had expected to be faced with.  I was at Disney for goodness sake.  Happiest Place On Earth after all, right?  Although I had planned on fairy dust, smiles and excitement, life is often full of different plans.  The table of twelve was just that sort of unexpected eye opener from my past that causes a minor anxiety attack exactly when your backbone is not stiffened and you are not prepared for conflicting emotions.

I have heard the rumblings far and wide that surmise that autism is new because there are so few autistic adults.  “Where are all the autistic adults then, eh?”…is what some factions ask.  “I do not see them,” they say.  “If I can’t find autistic adults…then autism must be a new phenomena, right?”

My hearts breaks when I hear these rumblings because my other life is proof of how wrong this idea is because I know where the autistic adults are and I know, autism is not new.  The problem is that perhaps those who believe that autism is new…. are not looking in the right places.  I have spent a lot of time there, in the place where they are hidden, and I will tell you it is not always an easy place to go to or to remember.  I tell you that from the deepest place in my heart and I will also tell you with great honesty, I am thankful beyond words that times have changed.

The first day I reported to work, I didn’t understand.  They were just kids and only a few years younger than me and yet they were the residents!  Their ages varied a little bit, girls between the ages of 12 and 16, while I was all of 18 years old.  I understood their ages but what confused me was how normal they looked AND behaved.  They were not very different from me.  Socially awkward perhaps and inappropriate in moments but that was not all that different from me at that age either.  What was entirely different is that they lived in a group home and had been predominantly abandoned by family while I had not.  A few behavior issues mixed in the bunch, a few kids that seizured but, for the most part, just kids…who had been raised, for most of their lives, in an institution and whose family consisted of staff members.  It’s no wonder they were a little different.

You see, for those of you who are youngins, you have to realize that, Once-Upon-A-Time (as the fairy tale storybook intro goes) , parents were absolutely obedient.  In generations prior, they were good little soldiers, do as you’re told adults, and members in good standing of the Clean Plate Club.  Rock solid and staunch in their want to do right.  They did as they were told by the powers that be and they dared not question the black robes and the white coats that provided the foundational corners of their lives.  They never said no, they dared not disagree and they ever so rarely stood up straight and tall in defiance of mainstream because that would be wrong.  And, honestly, it just wasn’t socially acceptable at all to stand up and fight.  It wasn’t respectable.   James Dean was the only Rebel allowed…safely on a movie screen of course but not in real life and actively demonstrating disrespect!

And when doctors advised them to institutionalize children who were differently-abled because it was the best thing to do, parents did what they were told no matter how it broke their hearts.  They simply believed. They were told they would be a harm to their children if they kept them at home, that they would never be able to help such a child.  They were assured these differently-abled children, non-perfect in their development as they were,  would destroy the family unit.

Sitting beside the Table of Twelve with my spectrum kiddo, were ten old school differently abled adults from another generation along with two counselors.  A generation of kiddos raised by the parents who were absolutely good and obedient and did as they were told.  Parents who trusted the powers that be and signed over their kiddos to institutions.  Looking at the table, and trying not to gaze too long, I could see carbon copies of the kiddos from the St. Vincent’s group home of my college years.  I am not sure of all the disabilities sitting at that Table of Twelve but a few of them were familiar enough to me to remember.  Two appeared to have cerebral palsy, one appeared hydrocephalic but most appeared to be developmental delays of varying types.  All seemed very alert, conversational and quite well mannered but there was one woman in particular that caught my eye.  The woman sitting second from the end of the table reminded me immensely of my own spectrum kiddo.

It was not how she looked, it was not how she was dressed because we all know autism is not defined by anything visual.  What caught my attention, because I was close enough to hear her speak, was her tone of voice and the words she spoke.  As she talked to her waitress, I might as well have been listening to my own son speaking.  As I heard her words, I could even hear my own verbal correction formulating inside my head because I am so conditioned to coach him in better choices, verbally and socially.  The waitress asked for her drink order and the woman, appearing to be around 55 or so, gave a perfect request for coke and then her dinner choice without prompting.  What caught my attention was that as soon as the food order was given, the woman hardly took a breath before she said loudly to the waitress, “I want to ask you a question too.”

Just as quickly as I would have responded to my own son’s announcement, the counselor that sat beside her quickly jumped in with, “We are not asking questions right now.  We are only giving our food order.” And it may sound like an unkind correction from the counselor but, having a lot of experience with inappropriate social questions, I get that she needed to preview the question first before letting it hit public air.  It’s a smart thing to do to avoid embarrassing the waitress and to better try to script an appropriate social interaction.

That was the point when I started to fight back the tears. The woman at the Table of Twelve could have been my child had we lived in another generation.

Would I have been strong enough to stand up for my boy in those days?  Would I have fought in a time when fighting was not okay?  It was clear, at least to me, that half of the men and women at that table (all aged 50-ish to 7o-ish) are all part of a lost autism generation.  Perhaps not as readily diagnosed back in their day with autism, it is still what they would be deemed today.  A product of well meaning parents who listened to doctors, professionals and friends, who encouraged them to send their behaviorally and developmentally challenged children to institutions and group homes in the 50’s, 60’s, 70’s and 80’s.  It was a time when only the compliant and  perfect people were kept in public view.

I know it has happened prior to the 50’s and after the 80’s but, more and more, parents are becoming a new generation that is not as respectful, who do not revere doctors to the point of passivity.  Parents are no longer giving a blind-faith pass to doctors to dole out their child’s future in a premature declaration of all they will not be.  Thankfully parents today are seeing that differently-abled is a frame of mind and that different is not less..it is just quirky.  And kids are being given the opportunity to spend more time developing and growing in the loving arms of family with support, nurture and cheerleaders who believe that they CAN do more and be more and rise up to the potential that is at the moment locked in their autistic mystery.

She could have been my child and my boy could have had that life had he not been born in the 90’s and that reality shook me.  He could have been dismissed, overlooked, undervalued.  I didn’t lose it right there at the table.  I took a walk later downstairs at the hotel under the guise of something I left in the car and I lost it quietly on my walk.

I realized I was elated for who my son is and for the generation he lives in that has learned to embrace his differences.  In that same breath, I grieved for all the autistic adults whose opportunity to shine was taken from them the day they were moved from their families and were ushered into institutions or schools who shunned their differences during their childhoods.  I am sorry for the equal value they did not receive.  It was gut wrenching to wonder what the world at large has lost because we did not nurture those children and the wonder that lived quietly in their hearts and imaginations.  How many Carly Fleischmanns and Temple Grandins have we lost along with the wisdom and innovation they could have provided us?  How much heart have we lost by sweeping aside imperfection?

In another time, any one of those adults at the table could have been my son.  In another place and another time, I might not have been strong enough to face down a doctor. In another time, he might have been warehoused rather than applauded.  He might have been beat down rather than raised up.  In another time, he might have grown up to be an autistic adult who was raised by staff rather than nurtured by his mother, father, siblings and a community that holds his quirky brilliance close to their hearts.

My boy is the autistic woman at the table.  The only difference is the date on his birth certificate.

The autistic adults are out there and plentiful.  Autism is not new.  There are plenty of autistic adults but these brave souls have been quietly ushered into a private existence either because they were given over to group homes you do not visit or because the world has been too unkind and too hurtful to them and they have retreated.  I would like to apologize to each and every autistic adult who was not seen by the world as a gift and a blessing and whose brilliance was not celebrated.

I am also deeply thankful for every parent who stands up, who says no thank you to the experts and, despite  bleak official outlooks from well meaning doctors, stand firm and tall in their defiance of the mainstream who cannot see the same potential and the sparkle they glimpse in their child.  Thank you for becoming cheerleaders, advocates and grizzly parents to the autistic kiddos who need you.  Let us never go back to the days of blindly following anyone who is willing to fail the vulnerable children who need them the most.

MJB: Indeed, Good To The Last Drop

autism sparkles-96

Third grade was a very good year.  I can still remember her project to this day…which is odd since I can’t remember my own at all.    The “her” I am referring to is one of my earliest childhood friends, Mary.  There were no Logans, Cadens, Emmas, Sophias, Masons or Hunters back in our day.  We were simple-named kids, born in the later 1960’s, with plain Jane names like Mary, Danny, Kathleen, Chris, Steve, Tammy, Mike, Sheryl and Joe and we stepped onto Canalino’s kindergarten playground for the first time in 1972.  In 1975, when we first walked into Mr. Spittle’s third grade classroom, we plain named kiddos of the 70’s were sporting some eye popping polyester, waffle stompers, vibrant florals paired with stripes, bell bottoms and a whole lot of hand sewn and hand-me-down clothes. I still remember the yellow, button-up, Raggedy Ann shirt my mom made me.  We were, without apology, a myriad of fashion don’ts.

There were two third grade classrooms at Canalino and they sat right next door to one another with a moveable, accordion style, wall separating the two.  Thirty-eight years ago, there were roughly forty of us third graders in those two classrooms and we’d been friends since kindergarten.  Small town, small school and that forty or so member alumni third grade group (combining Mrs. Kerr’s and Mr. Spittle’s students) would also go on to create 1/3 of our 120-kiddo high school graduating Class in 1985.  Small towns are like that.  The kids you meet in kindergarten stay with you throughout your school career and go on to shadow you into the rest of your life. Few in number but as solid and enduring as they come and, consequently, the loss of even one is a heavy blow.  I can still remember when Lee and Denny moved to Sweetwater, Texas and, to this day, it feels like we lost one of our own.

The project I remember, hers and not mine, was titled: MJB: Good to the Last Drop.

We were expected to use our initials or full name to make a product and then design or sketch a prototype.  I think, if my cloudy memory serves me at all, we had to write a letter to a company or celebrity as well.  I wrote a letter to Dusty Baker and that is the entire extent of what I remember about my project.  Mary’s project, on the other hand, is etched into my memory because she was just downright brilliant.

I won’t give you her whole name.  I love her family too much to compromise any level of privacy but, for the sake of explaining her project, I will confess her initials are indeed MJB.  Very much the same as the brand of coffee from the 70’s.  For our third grade project, Mary made her own brand of coffee, named it MJB (replacing her last name with the word “BEAN”) and thus was born her product.  She then brilliantly allowed two powerhouse coffee companies to collaborate on her product as the motto for her MJB coffee became Maxwell House’s slogan, “Good to the last drop.”

These flashes are what hit me on Friday.  The Friday last week when I fell head first into a puddle of tears.  They are the same flashes that fill me, today, the 364th day since her untimely death.  They are flashes from a childhood and an adulthood that we shared and traipsed in and out of during out last forty years.  Moments mostly.  I am left with a handful of these nearly still shots that spread out to include her smile, her laugh, sarcastic comments whispered under her breath immediately followed by a giggle, both of us dressed in our red polyester pantsuits for the Pixie (the precursor to Daisy Scouts back in the day) meeting after school in first grade, a monumental, pee-your-pants kind of belly laugh on a stair case while on a double date in college as we tried and failed to mix the flavors of two bottled drinks with a turkey baster, and the very overwhelming moment when I was homesick for Cali and friends after just moving to Cleveland and while on the phone with another Canalino friend who asked, “Doesn’t Mary live in Cincinnati now?”  I still can’t figure out how two Cali girls, raised a few streets away from one another, wound up living in the Midwest just three hours apart but God was good to us.

These moments are like a lifeline, filling up the spaces, as I approach tomorrow…a year to the date that I lost this Canalino friend who is as much like family as anyone I know.  Friends from small towns are like that and become  family with as much ease as a tributary embeds itself into a river.  There weren’t that many of us growing up so you hold on tight.  Friends in small towns become second nature to you and when you lose them, it’s like losing a witness to your life.  There were things about my life ONLY Mary knew.  She walked the still shots with me and, with the witness gone, it was as though those moments no longer exist.

I have been ultra aware that tomorrow is approaching.  I have struggled with her absence in every single one of the 363 days that have passed before today.  What I wasn’t aware of is how deeply her absence would swell inside of me as the 365th day approached.

Friday morning, Day 358, is when the tears began to well up with such force that they would not be still and stop falling.  Thankfully, shortly after the water works turned on (even tho I am NOT a crier), I got a surprise text from a Canalino friend.   He sent me a good morning text from where he lives a few hours away. I immediately gave him a kind head’s up that I was having a bad morning and that he might want to high tail it out of range of me ASAP.  The very endearing thing about those Canalino friends… is they don’t run.

Canalino friends step in closer during the rough spots.

He texted back, “You know I won’t run from you. EVER. Give me five and I’ll call.”  That is what a good friend, a childhood friend, a Canalino friend does.  He stepped in to hold me up while I was crumbling and I cried my eyes out for two hours while we talked.  I gave him all sorts of excuses of why I was a red hot mess until it hit me and I whispered to him, “Mary”, and it all made sense.  And I told him, “I need to do more because she can’t.”  And, my friend, the tattooed, roughed up, tough guy that might just scare you if you didn’t know him, the boy who is simply my sweet childhood friend despite the rough exterior he’s gained as an adult, set me straight.  He reminded me that, just like he and I are connected no matter how different we are and no matter where we live or who else is in our lives, she will always be connected to us too.  She’s still here, she’s a Canalino friend and Canalino friends step in.  She is part of who we are and though I can’t text or call her any longer, her vivacious nature is present.  She is embedded in each of us.

In the beginning as I stepped up to meet death head on, I had thought it would simply mean I would grieve, lose her and move on.  I have struggled all year with why I cannot let her go but now I know, I was ALL wrong.  Big time wrong-ness.  Talking with Danny reminded me of MJB.  Talking with him, hearing his voice, it took me back to third grade and Mr. Spittle and the Dusty Baker/ MJB project.  That’s when it hit me HARD.  That’s when I finally understood that MJB is indeed… good to the last drop and there is absolutely NOTHING to let go of.  It’s wicked funny how Mary’s project from thirty eight years ago is still imparting wisdom and comfort.  It’s crazy how brilliant the woman was and currently is.  It’s amazing how she is still at work in my life.

Childhood friends, friends like my Mary and my Danny, leave droplets in your heart, they leave flashes in your memory and they imprint themselves so deeply into your soul that they never really leave you.  Even in death, they simply step in closer.  When you have navigated life with a friend for so many years they leave a layer of themselves under your skin and in your heart and you are never far from who they are or from the laughter they shared.  Every single drop she left behind…her humor, her audacity, her laughter, her skill, her brilliance …every piece of her remains solid and present.  And the anniversary of her passing, the day when her body lost a fierce battle, is the day I vow to welcome her back into my life because I know that no amount of emptiness will ever be fierce enough to take her place.

Strong her whole life, she was a uniformed customs agent for 21 years, an expert marksman, a K-9 handler, a mother and a friend but she was never delicate.  She never gave up, she never walked away from family, she never backed down.  She was vast and brilliant every day and I realize now that what I am left with, a year after she passed, is a thousand tiny drops of MJB laced within my life.  Moments, laughter, and brilliance that were bathed in her light that are embedded in each of us that loved her.  And, somehow, I am able to see life and death differently because of Danny and Mary and I am thankful for every single day I knew this fabulous woman that lived so fiercely because, I know now, the beauty of a life well lived…is that it lives on… in every single drop and the drops never end.

Beware The Happy Parent Moments

That happy-parent-moment…after you have tucked your children into bed and their rooms are dark…life is content and you have this overwhelming emotional need to rush back into their room for one last hug and to tell them just one more time how much you love them and how lucky you feel to be their mother and you push open the first door… only to suddenly be a little confused by the sight of his face, all lit up by the unmistakable glow of the Nintendo he is PLAYING that he had hidden under his pillow while you said goodnight the first time… and the happy-parent-moment…it’s GONE…and replaced by something entirely different.

Slaying The Monster In The Classroom: Cameras in classrooms? YES. PLEASE.

autism sparkles-21This is something I need to write.  I don’t want to write it.  In fact, I don’t even want to know it.  It’s one of those hard to write kind of things because no one wants to believe it goes on and I hate to be the one to tell you but, truth be told, this is the kind of thing all parents NEED to know…especially parents of special needs kiddos who are speech impaired.  This one is going to hurt your heart a bit but keep reading anyway.  I will be bold enough to tell you it is as hard to write as it is to read.  It’s the very rawest truth.  It is the truth we don’t want to hear.  It is the truth none of us want to believe and yet, as black and bruising as it is to our hearts, it is still very much the truth.

Lately the argument has been whether or not to put cameras in special needs classrooms.  I am not sure why there is a debate.  There shouldn’t be a debate.  There is only one right answer and that is a resounding YES.  PUT CAMERAS IN special needs CLASSROOMS. YES, please, for the sake of good teachers and vulnerable kiddos everywhere.  Cameras…YES.

I am not here to condemn good teachers.  I believe my boy’s first teacher, I’ll call her Queen, was a gift from God.  A good queen.  A great queen.  The kind of queen every parent wishes for their child.  She is the reason my boy is where he is today.  SHE gave him a chance when no one else would.  She fought for him, she stood beside him and stood strong through his melt down moments and she stood with me when we both had to fight and love him in equal strengths.  Queen teachers who love and commit and devote themselves to building up the strengths of quirky kids are not the kind of teacher I am talking about today.  The Queen is only worthy of my deepest praise as are all queens like her.  They are sacred ground in my book.  They are what all teachers should aspire to.

Unfortunately not all teachers do.

The other teachers, the kind I am going to tell you about, are named Monster in my book.  I make no apologies.  Monsters earn their stripes and their names and what they do to children with special needs in the privacy of their classroom is despicable, cowardly and not worthy of the title of teacher. In my book they are nothing more than monsters who are protected by administrations and unions.  They count on their tenure to protect their abusive actions and they count on the families of the kids they abuse to fund their retirements.

Monsters NEED cameras.

Once upon a time, I was a student teacher.  I already had my multi-subject credential as well as eight years in the autism trenches with my spectrum kiddo and I wanted my special ed credential.  So, I did what I needed to do.  I went back to the same university where I earned my multiple subject credential and I went back to school.  When it came time for my student teaching, I was elated to discover that one of my university professors, who was also a current special ed teacher, would be my so called, master teacher.  I use the term loosely.  I will not even capitalize it because monsters don’t deserve capitalization.

I will not give her name because this is not about revenge or vendettas.  Writing this is about telling the truth and spreading the word that cameras ARE necessary.  Kiddos deserve the protection every day.  Although the university appalls me now, I will not identify them as well.  What I will give you is the detailed notes of the incidences I was witness to so that you will understand why I say fight for your kiddos, advocate for your kiddos, do not give blind trust to someone with a fancy piece of paper from a school.  Paper is cheap, actions are immense.  I will also tell you it has been a long time since I have looked at the detailed notes I took during my student teaching days.  They are as hard to read now as they were to write back then.

Before you scream foul, I will tell you that I notified my university supervisor, I notified the university department head.  I was told by the university that I should be more flexible and not make waves.  I then notified CPS and filed a report because as a credentialed teacher, I am also a mandated reporter.  The sad part is that because of tenure and unions, I believe she is not only still teaching but she is still a “professor” at the same university.  When I personally asked the monster why the district did not put cameras in the classrooms, she rallied around the question and told me that she’s been a teacher for 25 years, only had a few years until she retired and has been trained in pressure points.

The students in the class I student taught in were 2nd and 3rd graders who were all speech impaired.  The monster teacher was morbidly obese, had restricted mobility and the simple act of standing often made her have to stop and catch her breath.  I have also changed the names of the students involved to protect their identity.  Because I felt helpless, I felt like all avenues of help for these kids were being closed on me, I was advised to document the incidences in as much detail as I could.  These are my actual notes…the way I wrote it in that moment.  I am not writing this from memory.  The boy I call “C” actually has a behavior plan in place but the monster teacher refused to comply with it because it took too long.

September 1 @ 9:18 a.m.:

C (the student) would not comply, would not go to his group.  He was yelling loudly and refusing to comply with directions. The teacher bellowed LOUDLY, caught him by the NECK and seemed to apply pressure to the back of his neck.  He screamed.  Using her hand gripped on his neck, she steered him back to his seat and into a sitting position and then directed him to listen to the teacher’s aide running his small group.  He sat for a few minutes.

(When I asked her about her methods, since I was new to her classroom, she explained to me that if you do put your hands on a child, you should request an IEP meeting that same afternoon but in her class she has special training in pressure points so she does not call. I could not find this caveat in ANY standards book the State of California holds.)

C got back up and left his seat again and she again grabbed him by his neck and sat him back down.  C was then very compliant.

September 1@ 11:28

The teacher went to a grade level meeting and when she returned C was laying on the floor in the back of the classroom.  His socks and shoes were off.  The teacher asked him to get up and he refused and she bellowed (I consider bellow well beyond yelling) at him.  While he was still lying on the floor, she reached down to where he was on the floor, put her hand into his hair and appeared to pull his head up by his hair to get him upright.  When he was up, she grabbed his neck and forced him with her hands squeezing the back of his neck to sit down in his seat.  The other aide passed out math fast facts.  C refused again.  The teacher then stood behind him, leaned in and over him until her weight was fully squeezing him between her body and the edge of his desk. C began to scream and she took her hand and COVERED his full mouth so he couldn’t yell…all the while still pushing the full weight of her morbidly obese body against him and the hard edge of his desk.  While still covering his mouth with one hand, she then grabbed his hand with her other hand and placed a pencil in it. She squeezed his hand and forcibly began to write the answers on his page.  He then began to comply and she released her grip.  He then continued to cry that he didn’t want to come to school.

September 1 @11:55 a.m.:

The teacher was trying to get B’s attention but he was not paying attention.  She used her thumb and forefinger to thump him hard two times on the back of the head.

September 1 @12:05:

C was not complying.  She went over to him, grabbed him by the back of the shirt so that the front of his shirt is cutting into his neck and she then used the shirt in that constricting position to steer him to his seat.  When he started to utter silly words, she grabbed his mouth, squeezed hard and told him, “I don’t want to hear it anymore.”

This was just ONE DAY.  The aides who work in her class have been with her for many years and they do nothing.  They are as scared and paralyzed as the students.  Fearing for their jobs and pensions more than they were worried about the students.  It is also noted that the monster is so savvy about her abusive tactics that she only grabs children in non bruising areas.

September 7 @ 10:10

The students were in small groups.  C didn’t want to read the page we were on.  He then screamed and howled and left the table.  When he returned, he began to scream and shriek and howl again.  The teacher came over and sat/stood beside him and wrapped her arm around his head until her hand landed on his mouth and was fully covering his whole mouth.  She held it there while he screamed until he stopped.  She then informed me that this kind of restraint was not appropriate if I was being evaluated or if someone else was in the classroom.  She said she needs to call his parents and inform them of what strategies are being utilized.

No calls to my knowledge were made.

September 8 @8:31

C is reading a book at the book shelf by the cubbies.  The book was open, C’s hand was sitting on one page.  The teacher asked him to put the book away.  C ignored the directive.  The teacher came back to the book shelf, shouted, “NO! It is not time for books.”  She then SLAMMED the book closed with his hand still inside and then put her hand and her morbidly obese weight down on top of the book with his hand still inside….She did this until he screamed and then she reprimanded him AGAIN.

September 30 @ 1:30pm:

While directly calling a student by name, the teacher yells across the classroom, while the students are all sitting right there and I am in the back of the classroom, “B is dumb as a door knob.”

October 12 @ recess

Teacher to student:  “You need to be a good kid!”

Student to teacher:  “I am a good kid.”

Teacher to student: “No, you’re NOT!

Speaking/shouting to the same child on October 13:

Teacher to student: “You don’t get to make your own choices!  I’m the teacher!”

Speaking to the same child on October 28:

“I am going to send you to the dean and your grandma can buy you time in Juvenile Hall.”

October 17 @ 9:20 a.m.:

Student A is sitting in small groups.  He was not working.  He was complaining and finally fell off his chair and on to the floor.  The teacher asked him to get up.  He did not respond.  The teacher went over to him put a hand on each ear and then grabbed each ear hard and pulled until he screamed out in pain. She then pulled each ear in unison in an upward fashion until he screamed out in pain more and stood up and complied.  He then sat in his seat.

I know, take a deep breath. It’s hard stuff to read about.  It was hard to be there and then to feel helpless because no one would do anything.  Edmund Burke said, “All that is necessary for the triumph of evil is that good men do nothing,” and that hit home hard for me.  So many staff and admin who are paid substantial salaries and retirements do NOTHING to protect these children…but CAMERAS WILL.

Let me say, this unfortunately goes on and on.  And, sadly, this teacher is not the only one, she is simply the first time I realized how truly vulnerable our kiddos are and how there are teachers who use their positions of power for abuse.  It was the first time I realized that there are teachers who use their tenure and reputation to take the easy road because they are tired and lazy and don’t really enjoy teaching but really want the paycheck and retirement.  It was the first time I realized that teacher’s and admins have their own so called blue wall and they will close ranks to protect the monsters in order to preserve reputations and retirement at the expense of children.

Cameras in special needs classrooms are necessary.

Cameras WILL prevent teachers from becoming Ogars and Monsters and beasts because they have proven that they will behave ONLY when the paycheck signers are watching them.  And, truly, it’s not always that your child is going to be beaten or raped, sometimes it’s that they are going to be humiliated day in and day out, mildly abused, verbally and physically, day in and day out and they can fall victim to an abuser who defeats their want to learn and destroys their sense of well being and the very self esteem you have worked so hard to build.  Children who are already communication impaired are easy targets.  They cannot defend themselves nor can they explain to you what went on.  They simply withdraw and act out even more and the teacher makes them the scapegoat for the teacher’s own evil.  When teachers turn to Monsters because no one is looking, children are in jeopardy of being bruised both skin deep and soul deep.  All children deserve a safe and nurturing environment in which to learn and kids with special needs NEED this in order to reach out and try to connect.  Cameras WILL ensure this happens and will weed out the teachers who are unwilling to commit to this and who perhaps got into teaching for the WRONG reasons.

CAMERAS…YES!!!…It’s a no brainer, my friends.  Be a super hero every single day by standing up for children!  Cameras protect our most vulnerable members of society from our most depraved and evil monsters.  Cameras should be MANDATORY in ALL special needs classrooms.

Embracing The Nasty Booger

I honestly don’t remember anyone saying life would be easy.

Nope, no one did.  Not once.

Then again, as I recall, no one ever threw up a yellow flag that cautioned we would each find moments in our lives that would be entirely black  either.  No one said it would be so dark that sometimes you won’t even be able to see the road.  Or that, for some,  life would give you twice as much as your hands could physically hold.  Or that sometimes, after life has dealt you some awfully hard blows, it will also chuckle at you as it throws on a few more.

Life has a sense of humor like that.

Some chapters of life, as my son would say, are just nasty boogers.  It’s a title he gave to his fourth grade teacher during one of his own dark melting down moments and the term has remained faithful in our family ever since.

The undeniable truth is that there will be darkness and even though life dishes the nasty-booger-moments out, life isn’t as quick to offer up simple answers or give us the light we want when we want it.  There are those darker days when the answers sit under the shadows and only time and struggle will unveil them.  The kind of time and struggle that is never easy, fun, filled with giggles or even warm.

Time can be slow. Time isn’t always kind or comfortable.

In the darker places, the best you can really do is keep trying to move forward based solely on instinct, hope and love.  Some days you will hold on by a thread.  Some days you will simply hope the inner voice you sometimes hear will show you a bit of grace and keep guiding you forward, one baby step at a time, through the blackness.

Thankfully, and a thought that’s worth holding onto during those dark-nasty-booger-moments is that, believe it or not, these moments are worth it.  I know, I know….it won’t seem like it at the time but, later…maybe even much later, they absolutely are.  What I have discovered, on this journey, is the blackness is where the strength grows and where character is born.  The blackest moment holds the deepest strength.  That barely-holding-on-nasty-booger-black-moment is the very moment when you get to see who you are because this is the moment when the ‘who’ you are evolving into begins appearing, growing, building.  Growth, for darn sure, ain’t easy and it’s not something everyone does well or with grace but, eventually, it’s a good thing.  Sure, scary and lonely too and hopelessly full of uncertainty and… it’s still good.

It is during these frightening, hunkered down moments when all the clarity is muddied and you think you are breaking, when you step away from the crowds, the comfort and even the well traveled path and you touch upon the bare bones of who you truly are because dark moments are when we stretch.

In that uncharted territory, in the pain and the unknown and the hurt, is when we get that glimpse of who we really are.  This is when emotional muscle and back bone are layered into the “who” that we are becoming.   And though there will be times when you want to give up, give in and wave your white flag in defeat…don’t.  Hang on longer, hunker down a little lower because who you are becoming matters.  Meandering away from shiny, sweet and perfect and evolving into seasoned, useful and wise is not easy but, the honest truth is, shiny, sweet and perfect is also shallow and useless.  It takes the nasty-booger-moments to grow the strength and wisdom this life needs us to have.

I see the friends in my circle who have been roughed up by life and these are the ones I love most.  Though they have weathered their share of darkness, they carry the kind of light and grace that shines brightness on the darkest of days.    These friends who have weathered the darkness and have made it through the nasty-booger-moments are the ones I pull myself nearer to.  They seem to have more love and light in reserve to share.  Their wisdom and warmth is sincere like no other and their light soothes the darker days.  We may not like the nasty-booger-moments and they may not be our favorite place to hang out but they sure do make the world, and our circle of friends, a better place.  In the end, I’ll take and embrace those nasty booger moments if they lessen the amount of shiny-shallow in this life and move us all to that place where light and grace abound because the light and grace is where the love and the peace breathe freely and where the softer side of life begins.

 

Autism: LOVE?…that’s NOT possible…wait…really?

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Today a Wonder Soul asked if I really do love autism or if it’s just a show I put on to spray sunshine about.  How can you love it, they asked, when it’s so hard?  I know, I know…it sounds hoaky, right?

Love autism?

REALLY?

It’s a good question.  I appreciate the honesty.  How could you love something that is so tough, so hard, so filled with uncertainty, hurt, battles and sometimes loss?  I know, I get it, I’ve sat on that side of the emotion too once upon a time.  The side filled with one giant and blackened pity pot.  No, it sure isn’t all sunshine and roses by any means.  It’s thorny and rocky, mushy and murky in some moments and overflowing with tears in others.

So, really how can you love something so tough?

It’s not that I revel in the rough moments.  I don’t.  Struggle is never a happy place but the moment that warms it all up for me I realize, as I look back over our decade with autism, is when it occurs to me that the rough moments are when we were growing.  They are also moments that are filled with a whole lot of goodness too.

Who my boy is… is exactly who he is meant to be.  He is enough and when I take a step back and see autism from a distance, I realize the struggles and the challenges that we have endured are what have grown me into a better person and a better mother.  Into the person who sees grace and goodness within the rough spots.  The kind of person who can see greatness in autism  It took me a few years but, now… I finally get it.  Life isn’t about racing and struggling to sit atop the perfection podium.  Life is about  seeing wholeness right in the place where you are.  We are not perfect but we are complete.  Looking back I can see the blessings, the good fortune and the overwhelming depth that loving and even, dare I say it, embracing autism have imparted into our life.  It doesn’t mean I give up it simply means I allow for grace where it matters.

What I get now, and the reason I love autism, is I see the bigger picture and how that dreaded six letter word that begins with the letter ‘A’ and ends with an ‘M’, has blessed us with a bigger view of life and a deeper appreciation for different.  It’s only now that I see how that matters more than I ever could have understood before he became my child.  I see how autism has moved me, changed me, and grown me into that person I always wanted to be but didn’t have the resolve to become.

Without autism, I don’t want to know who I’d be today because I am certain I would be a lesser form of human.  It’s frightening for me, when I think of the might-have-beens, to think of what I’d be like without the education autism and my boy have brought to me.  I don’t want to know that person because who I was before he was born is not even half the person I have the good fortune to be today. Today I am better, I’m more, I’m richer in my understanding and I see life more clearly because autism and my boy helped me sit right inside that more astonishing view of life.  My boy and autism have taught me more than a text book and typical ever could have.  Because of autism and my boy, I have reached deeper, fought harder and opened my eyes wider to life’s wonder than I ever could have without the two of them.  I have the honor of seeing life through his eyes and that makes me pretty lucky because his view is simply and utterly profound.  Yeah, it’s hard…no doubt… but nothing great ever came easy.

I love autism because it has opened my eyes and blessed me with a more robust and understanding view of life.  The compassion and understanding he has brought to me has helped me to see that different is indeed NOT less and …it is in fact a whole lot MORE and, to be quite honest, I would not change a thing.  I think this entire world would be better if every person could truly open their eyes to the sparkle that lives within autism or if we could spread not only the awareness but the love and understanding that autism ushers in when it whirls itself into your life.

I am blessed and thankful and yes, I do, I love autism…every single day, every single corner, every single moment because the mystery that it unravels and the lessons it can teach are immense.    Sparkle On, my friends!

Autism: A Lesson From The Trenches

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To the Wonder Souls who are in the trenches right now, fighting as well as working with autism every single day, please listen to what I am about to say.
You see the thing is….in those early days, I was scared too.  I thought autism was a childhood crasher, game over, dream ender.  I thought if I worried more I was working harder. Crazy stuff you say but I bet you know what I’m talking about ;).

I am here to tell you it is NOT a game ender, it’s just a different processing system.  That’s the crazy, crazy part I can see now as I look back….autism just means it’s going to be tougher, the challenges are going to stand a little firmer, and your are going to live in a gray area for a pretty good while…BUT….autism is full of some wildly good stuff and autism does NOT mean it’s over.   Autism just means you have to throw out the old rule book and write a new one.  Or, better yet, let’s go without rules and wing it.

Yes, your child is going to be quirky, your child’s progress will come more slowly and your are not always going to have the answers.   Nonetheless…trudge forward, stand your ground and I guarantee you that when you look back you will understand what I am saying….you’ll see how different may be harder sometimes but it’s still GREAT.  It’s great because the lessons you learn from autism aren’t taught in any book.  They are bigger than rule books.  I have fought, I have thrown down, and I have pushed back hard…and he and I are both better for it all.  And, just in case you wonder, let me say crying is okay too.  Cry for goodness sake…it’s a release from all the hard work and emotion you fill your day with.  You have to let it out sometimes.  I have cried my eyes out in moments but it didn’t mean I was losing…just meant I needed a moment to gather myself.

And, for the record, my boy is not perfect.  We did not overcome every obstacle, he is still on the spectrum and he still faces setbacks and struggles but we’re OKAY.  He is the very best HIM and I like who he is.  He teaches me mountains of stuff that I never would have known.  I would not change him.  He’s okay, I’m okay…we are okay together.

If I could change one thing….I wish I had understood all of this sooner, like when he was three….so that I could have put the fret ball of worry aside and just enjoy him completely.  Worrying robs you of your smile and your joy and doesn’t do your kiddo one bit of good.