Autism and IEPs and Grizzly Mommas…OH MY!!

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A Wonder Soul told me today it takes guts to say what I say to administrators.

In a way, she is right.  It does take guts.  But the part some of the newer Sparkle Mommas may not understand yet is that most of us don’t start out with guts, witty words or a backbone.  Most of us mommas start out with a whole lot of tears…until we are pushed too far, our kiddos are pushed aside and all we have left is to stand up, get tough and find our words.

Once upon a time, I was a Southernly mannered girlie.  Once upon a time, I believed whole heartedly that school districts did the right thing because it was the right thing to do.  Period.  Once upon a time, before our district quit on my boy, I would never have raised my voice or yelled at a school administrator.  EVER.  That was something reserved for the crazy parents.  I was not one of those.   And in those days, before that day in May two years ago, I thought the crazy parents were not like me.

Two years ago, my world began to crumble.  Two years ago, my world evolved through some painful moments.  Even now, looking back, the depth of the pain is still cringe worthy.  As it happens, I still have a tape recording of the painful moments from that day in May at the IEP I taped and even now, two years later, I can’t listen to it.  It was, for lack of any better description, just that ugly.  It was dark and mean and it demonstrated in full color what it looks like when educators let egos and their financial concerns block out the value and needs of the children.  The moments on that tape are an auditory record of what it sounds like when a school district slams the door in your face.  It is the verbal record of what abandonment and professional bullying sound like.  It is what failure feels like.  It is the actual color that settles deep into your skin and bruises you with the very real fear of what might happen to your child when good men and women choose to do nothing.

It’s been two years since my world crashed. Two years since our school district turned their back on my boy.  Two years since the last time a school administrator saw my tears fall into puddles. Two years since I felt helpless.  Two years since they threw my boy, educationally, under the proverbial bus.  Two years since a district made us stand up, alone, and fight against them.  Two years since the school district threw me up against the proverbial wall, as my boy’s teacher described it,  in their attempt to fail my boy and ignore his needs.  Two years since I discovered, once I went through his IEP with a fine tooth comb, that the district had even had the audacity to change his diagnosis…without approval, without authority, without an evaluation as evidence to back it up.  It’s been two years since my tears stopped flowing and my backbone turned to steel.

In my boy’s fifth grade year, our world began to unravel.  I won’t deteriorate into the reasons why it began but I will say that behaviorally and academically we began to regress.  In one quarter our GPA fell from a 3.78 to a 3.2 and no one cared.  No one even noticed.  In that same semester, his teacher, principal and I exchanged no less than twenty emails regarding his deteriorating behavior in class and no one stood up.  In the following semester there would be twenty or so more emails and letters and yet, despite assurances from our principal, teacher and superintendent, nothing would change.  IEP meetings were called and yet, still, nothing changed.  Excuses were thrown about, plans were made and yet nothing changed.  I held independent meeting with all the players, asked for help, mapped out behavior plans for the teacher and, still, nothing changed.  On St. Patrick’s Day a limerick assignment sent my boy into a horrible melt down and no admins were on campus to assist my boy.  I had to be called to school immediately.  It was a twelve minute drive and I decided I would take the ticket if I was pulled over because my boy was that out of control and talking to him on the phone was the only thing we had to keep him calm until I could physically get to the school.

Despite all of this, despite all the supporting evidence, nothing changed.  I was standing there, waving the red flag and no one cared to even look up from their desks, their offices or their politics.  I can tell you now, as I look back, I still don’t know what went wrong.  The players were good people, they knew my boy academically and behaviorally and it was not rocket science.  Same boy, same school, same players and yet a piece to the puzzle was fouled up and missing and it was destroying my boy’s ability to thrive educationally.

Add to this the pressure of knowing this was our last year of elementary school and we would soon be moving on to middle school.  Critical developmental junction!  Middle School!  My boy was at his lowest academic and behavioral point in many years and this was when he would be expected to transition to middle school. Middle School!  It was not how I had envisioned us transitioning.

It was about this time I asked the director of special services about our upcoming IEP meeting.  The IEP meeting we were supposed to have in order to facilitate a smooth transition.  I told him of my imminent concerns but he assured me there was no time for such a meeting since it was already May and teachers and admins were too busy for last minute IEP meetings.  When I reiterated my concerns, he told me in his usual condescending manner (the one he often was known to use with women when they were not paired with a man) “Bless his little heart, we’ll do the best we can.”  When I asked again about the meeting I was told it would not happen.  It was only after I showed the same director the minutes from our IEP meeting four months prior with the words stating, “Schedule May IEP with middle school personnel for transition,” that he found the time to schedule all parties for a meeting.  I will say, despite how busy all personnel were before, this meeting was scheduled rather quickly.

The IEP meeting I refer to is now affectionately known as the IEP meeting from hell but it is also the meeting that turned the tide and firmed up my backbone. It is probably responsible for my evolution from momma bear to grizzly momma.  The IEP meeting from hell changed everything.

Never had I been in such a combative position.  The superintendent who was supposed to be at our meeting, a request I had made in writing, did not show.  No word, no apology, simply a blind siding no show.  The principal that I requested, in writing, be removed from our team due to the abusive rantings he’d showered upon me, was allowed to attend.  As well, and the darkest mark on this meeting, was a director of special services in attendance who regularly refused to discuss issues and instead was known to employ his favorite verbal strategy to avoid dealing with parental issues, “If it didn’t happen today, we aren’t going to talk about it because it’s in the past.”  I know, I know, that’s a whole other story that we’ll have to save for another time.

Inside of the meeting, with both schools in attendance, here are just a few of the gems that occurred.

  • After four years in this district, a comprehensive evaluation and a triennial had never been performed.
  • When I offered the “director” the opportunity to refer back to the UCLA evaluation that is in my boy’s file, the director of special services replied, “UCLA is not a school district so I don’t have to acknowledge that evaluation or abide by their diagnosis.”
  • He also informed me, in this meeting, that my boy’s behavioral modifications did not have to be preventative, positive, monitored or measured for progress.  The “director” assured me the teacher would “just know”.
  • In this meeting I was told NOT to ask questions.
  • When I asked, “Don’t you even want the parent’s input?” he replied, “No, I don’t.”
  • The agenda I hand delivered and had date stamped in his office he informed me he had no knowledge of.  My parent agenda was apparently  MIA and he knew nothing about it.  He then went on to refuse to address any of the issues from the copy of the agenda I brought to the meeting.
  • The “director” also claimed no knowledge of any of the emails I’d sent all year.  He claimed there must be an issue with the school district’s email system though no other personnel seemed to have this issue.

It was not my favorite day ever but, I have to say that many good things came from that meeting and that is certainly when my backbone grew firm.

After that meeting and after the director finally offered an evaluation of my son, he then sent a new letter to my home informing me that the evaluation had been cancelled since I checked the wrong box on the form and he was acknowledging that “errant-check” as my refusal of services for evaluation.  Add to this the insult of him signing the confrontational letter with the closing phrase, “Very Truly Yours.”

The very best thing about the state of California when it comes to special education is the Office of Procedural Safeguards.  Bless them bunches.  When all else seemed dark, I began to grizzly up and I started to determine what my boy’s rights were.  As it turns out, the state of California, despite some of its school district’s philosophies, takes special education very seriously and schools can have their funding withheld if they don’t abide by the rules.  The day I discovered the O.P.S., I began to draft a letter and to fill out their complaint form.

As I began to write the letter, I put my pen down and then I took a step back.  I was having a bit of an identity crisis because, for all the years I’d been working with the districts, I was not that mom.  I am not that parent.  I always got along with everyone.  I worked with the district, I talked with the superintendents, I crafted behavior plans for his teachers.  I was the good parent.  I don’t file complaints, I talk with and work with the principals and teacher and superintendents.   I am not the crazy parent who fights and is adversarial and tough.  That is not me.

That was the moment when the evolution became clear.

In that moment, I realized that is me.  I had indeed become that parent.  I realized I am the fighter and I am also Southernly mannered but when you begin to threaten my child’s progress and future, I can become many, many different things.  I realized the time to talk and beg and be kind was over because, the saddest part was, the school has stopped listening.  Good men and women had chosen to stand by and do nothing.

I filed the complaint because I no longer had any avenues the school would listen to and, after seven years of working with the schools….I became one of those parents.

That was the day the sky cleared and my wish bone turned into a back bone.  That was the day I understood that the fighting parents were the parents who had been ignored and had been left no other choice but to fight.  That was the day I understood how school districts, for whatever reason, turn kind people into adversarial grizzlies.  That was the day I understood that districts don’t always do the right thing for the kiddos they are entrusted with.  Sometimes good men do nothing because pleasing political needs or satisfying financial line items are more important than children.  And, sometimes, educators are no longer in education for the children and for educating.

That day I organized my letter for the Office of Procedural Safeguards, noted my concerns (lettered A-M with a couple of sub letters in between) and my backbone firmed up.  The complaint I sent was housed in a two inch binder and the supporting paperwork, as well as the CD of the recorded IEP from hell, filled both inches of the binder.  As long as I was sending it, I decided I would shake every bush and see what fell out.  It would be up to the O.P.S to decide if the district was in compliance or not.

I waited all summer for the office of Tom Torlakson to determine that our  school district was indeed out of compliance in two areas.  I only needed one to get their attention but, by the grace of God, I was given two.  That was also the day I got a call from the district asking, ever so kindly, if we could move up my boy’s evaluation because now they wanted to get moving quickly on it.   They were now motivated by the deadlines looming from the O.P.S.  The same evaluation the “director” had played fast and loose with at the beginning of summer when he was “very truly yours” was now a whole different ball of wax.  I also got a new letter in the mail from the “director” assuring me that though I had requested additional testing and been denied, they were assuredly going to complete the entire evaluation.  The new letter was not signed “very truly yours.”  It was now signed, more professionally, “sincerely’. Now my boy was a priority, now my boy mattered and now it seemed the power control games played by school personnel were ending.

It wasn’t too long after that that my boy’s new and improved IEP meeting was held.  During this meeting, a school district attorney was sitting beside our director to dot each of his i’s and cross every one of his t’s.  She corrected him when needed and she explained  and clarified what he couldn’t.  She intervened frequently.  Very few other people spoke in this meeting.  I was pleasantly surprised, after his “bless his little heart” comment from months prior that this time he admitted, “Your son is very bright.  He tested near the gifted range and we need to make sure we have supports in place to make sure his academics reflect that.”

I was also very pleased to have an advocate with me for the very first time.  It was also the first time ever, as a single momma, that I requested my most muscled up male friend attend the meeting with me.  I assured him he didn’t have to say anything.  All he had to do is be a man and sit beside me and unfortunately, in our district, that would make a difference.  He even took it a step further and signed in as my fiance to somehow demonstrate his protectiveness of me and my boy.

That day this momma bear became a grizzly…not because she wanted to, not because it was easy but because she had to.  It was hard to be the bad guy.  It was hard to be the fighter.  It was hard to face down a room full of so called professionals and realize they did not value my boy like he should be valued.  It was hard to see that their politics and their fiscal priorities mattered more than my boy.  It was hard to finally realize that educators, despite their community paid salaries, can become bullies to the very people who fill their checking account.  But that day, after the fight and the win, not one condescending remark was made.  Not one avenue was glossed over and whether they had chosen to see my boy or not, they had decided it was now worth their time to do right by him.

These days I have learned, through much experience, to keep a level head and keep my emotions, as best I can, in check.  The smartest thing I have learned along the way is that I don’t have to carry the weight of the world on my back every time I walk into a meeting.  What I have learned is that it is better when I ask the questions and make the school find the answers.  It is smarter to put the ownership of fixing and creating onto them.  It is their job.

I will say, in follow up and bringing you up to date, that the IEP from hell changed everything.  That fall, after the compliance issues were fixed by state standards and my boy’s evaluation completed, we started middle school and the new team, the one we set into motion, could not be more committed to my boy.  I walked into the principal’s office a few week’s back.  I know I had a puzzled look on my face.  I thought for a moment before I spoke because I knew it would sound odd and I try to keep any odd to a minimum when I am talking to our new principal.  I told him with as much honesty as I could find, “I keep waiting for the other shoe to drop but it hasn’t.  It’s been nearly two years and it hasn’t dropped.”  I said it because I am always waiting for it and it suddenly feels like I don’t have to.

We have been in his school for almost two years now and it has been a pleasure.  For two years my boy has been on the honor roll and for two years this principal and my boy’s teachers have been a joy, a help and advocates at every turn.  I don’t have to stay three steps ahead and worry about what might happens next anymore like I used to.  The staff at this school do it naturally.  And, when a problem arises, it is not a chess game between the teacher, administration and I.  It is quick action with my boy’s needs in the forefront.  It is simply the best a momma could hope for and the funny thing is the grizzly momma has been able to rest because the shoe is not dropping.  That is what happens when good men and women do the right thing because it is the right thing to do.  Perhaps it takes the level of grizzly momma to even the playing field when administrators and so called educational professionals stop valuing the children.  Perhaps it takes the chaos and the fight and the ugly to help administrators remember why they are in the field of education.  It shouldn’t be like that but sometimes it is.  And, perhaps, it was a lesson to others that it matters what good men and women do especially now when the autism rates are on the rise and with a lot of gray area upon us, good men and women need to be as vigilant as their grizzly moms and dads so that autism can rise up to the heights it was meant to reach and never-ever, not once, be pushed aside because  political or financial line items have eclipsed the importance of the children.

And I realize now those parents are not the crazy parents…they are the seasoned parents, the grizzly moms and dads and grandparents who will no longer stand by and watch good men and women settle for doing nothing.   Those crazy grizzly mommas and dads are the ones who stand guard and make sure each and every day that good men and women continue to stand up the way they are supposed to and I am proud now to have joined the ranks.  And, truthfully, they never said it was going to be easy but I promise you it is worth every bit of the fight.

Sparkle On, my friends!!

Autism: The Only Cure I Want

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I am sure this will not be politically correct.

Lately it seems I often am not.   I simply speak openly and don’t measure my words or revise very diligently.  Honestly, there are moments when I hear the autism elite speaking and I am not even quite sure what they are talking about.  Those upper realms where the roar from fighting is so loud that children are eclipsed, is not a place I travel to.  I am the grassroots.  I am in the trenches. I am quietly fighting the good fight with my boy…one teacher at a time, one classroom at a time, one therapist at a time, one principal at a time, one superintendent at a time, one director of special services at a time, one school district at a time, one IEP meeting at a time, and one friend at a time.  There are no armies behind me, no troops rallying beside me.

It’s just me and my boy.

My boy is thirteen.  Many of you already know that but I repeat this for the newcomers.  They need to know I am not talking about a five year old because when we were five, I could never have imagined we’d be in middle school, on the honor roll and in regular education full time.  I could not imagine, in the days of two hour scream fests when he was slinging snot on his sweet kindergarten teacher, that we would go anywhere that was positive or good.  He is thirteen now and we have been in this fight with autism for eleven years.

It’s just me and my boy…and we’re alone but we are winning.

In a crazy way, I am thankful we have remained independent.  I am thankful we have not traveled the main roads or fallen into the popular trends.  Mostly, I am thankful my son was diagnosed back in the later stages of the darker ages of autism.  I am thankful we no longer live in the pre 70’s days of institutionalizing kiddos or the 80’s of pretty much still riding the fence and using the let’s-put-our-heads-in-the-sand philosophy.  I worked in the group homes in 80’s and I know what autism and institutions felt like and I am thankful my boy was not born in those days.  In the day of my son’s diagnosis, 2001, it was the dawning of awareness and the beginning of brighter days.  The dawn was thankfully breaking but, even still, not many knew enough to be helpful.

And, NO, that was not a typo.  I AM thankful my boy was diagnosed in those early days of autism awareness when nothing was really in stone.  It was perhaps the wild west days of autism awareness when risks could still be taken.  When envelopes could be pushed.  When teachers and parents were willing to step up and say no to the recommendations of school corporations and the corporations were still fumbling enough so they turned a blind eye to the cowboys that we were.  It was a time when seasoned teachers and principals named Kim and Cora were still in power and were skilled enough to say we’ll just go out on that  limb and we’ll give the different approach a try.  So many doctors and educators today sit in boxes.  They sit in books, they think they understand a six letter word and don’t even yet realize the striations involved, the complexities, or the layers of texture and skill behind that six letter word that they are not yet privy to after graduating with their teacher’s degree.  So many have not yet discovered that autism’s complexities and brilliance cannot be captured in a textbook and are more than words on a page.  Autism has to be lived to be understood.

I am thankful we had a maverick of a teacher named Kim who said yes and stepped up at a time when the rest of the world walked away and said what we wanted was impossible.   I am thankful we could plan his education without putting too much weight on dismal reports.  I am thankful we had a principal with enough seasoning to say, I’m here, I will help, I’m not sure exactly how this goes but let’s see how this boy can grow if we all stand together.  I am thankful that I did not immerse myself into the reports filled with “can’t” that relegated my boy to a life of nothing much.  I am thankful that somewhere in my softness a backbone grew strong and I learned to say no and to walk away from the ones who had formerly been my guideposts.  I am thankful for a family who saw the same glimpse of brilliance I saw, the sparkle that helped us see the light within the boy who was lost momentarily inside himself.

I don’t believe in curing autism.  I don’t believe that a refrigerator mom, or a number on a scale, or the flu, or a food, or an aging parent are the causes for autism.  I think there are a lot of different kinds of autism and I believe the causes are both genetic and environmental and as varied as the children who fill the spectrum. I don’t think there is a magic bullet or vaccine that will make it go away.  I think healthy eating will do us all a lot of good but I don’t expect any diet will make his quirks fall away nor do I want them to.  His quirks are home to me because I don’t believe he’s sick or wrong or broken.

I believe my boy is this glimpse of magic that has great strength and still holds marked weaknesses.  I believe he is in my life so that I can help him grow those weaknesses into strengths.  I believe I am the lucky one.  I believe, no matter how politically incorrect it may or may not be, that God gave him to me on purpose.  I believe God blessed me with this gift.  Yes, indeed, I do and I view my boy as a gift and a blessing every single day.

Yeah, I guess you can say autism is hard but that’s relative too, right?

  • I mean, honestly, being a young girl in India or Pakistan or Afghanistan or a lot of other places is hard.
  • Being a 17 year old boy sent to fight in the trenches of WWI was hard.
  • Landing on the beaches of Normandy in WWII was hard.
  • Being a Jew in the Holocaust was hard.
  • Being a parent to a child who has endured three rounds of chemo and is dying, well, that’s some hard stuff right there.
  • Watching your spouse die is hard.
  • Being a soldier and coming  home from Vietnam in the 60’s and 70’s was hard.

Yeah, autism is not always a cake walk but it’s not that hard.  Not really if you look at the big picture.  Pity is a pit that is only as deep as you let it be and I try not to let myself step too close to it.  It’s a slippery slope, you know?  There are lots of harder things to deal with than autism and I wouldn’t trade autism for any of them.  Yeah, there’s rough moments but, in the end, when the sparkles rise up, he’s worth it.  Autism is worth it.  Navigating the spectrum is worth it.

I don’t believe in magic pills or miracle cures.  I believe in hard work every day.  I don’t believe in breaks because now is the time to work for my boy and there will be plenty of time for rest when he’s older, when he doesn’t need me so much anymore.  I believe in magic children who have the ability to refocus our attention on the good stuff, the important stuff, the back to basics stuff.  I am better for having walked on this journey with him and I feel like I am the lucky one.  I certainly believe the autism community could come together better but that’s a whole other subject.  I don’t play in the circles with the autism elite.  I stay in the trenches with my boy and work in the here and now, every single day, because half way or half hearted is not good enough for me.

It’s just me and my boy and yet we’re enough.

I take my place with the other families who get that, who are on the battle lines, and we find our cure every day with each other…having faith, keeping the hope and sparkle alive and being fearless as we fiercely hold the brilliance of autism up to the medical and educational establishment in an effort to help them SEE our spectrum kiddos for the radiant children they are.  Don’t ever stop being that cowboy, that rebel that stands up.  Don’t ever stop being fearless and fighting the good fight for kiddos who can’t fight for themselves because, in the end, that is the only thing that really matters.  Because, truly, if we fail our children…nothing else matters.  And, on the day when the fight is done and our kiddos can stand up for themselves, that’s the day we will all take that tropical vacation.  On that day, we’ll sit peacefully in the sand and we will reflect on the goodness that comes from faith as we finally experience the decadence of watching our children from a distance as they live their lives.  That is the only cure I want.  I want to keep faith, hope and fearlessness alive in this battle against autism.  Sparkle On, my friends, and thank you for your camaraderie!

Autism: The Goodness and the Grace

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Last night, Dave came over.  Dave is our neighbor and he lives across the street.  He is a sweet man, happily married for thirty three years, and never has a man been happier to have grandchildren.  Dave stopped by to drop off a holiday present and while we were talking, my spectrum guy walked past me and stood right in front of Dave.  Though we have been in this neighborhood for a few years, Dave’s kids are older so though he waves hello, he has not met the kids formally.  My boy, that night with Dave, does not introduce himself but rather begins to go into immediate detail about a Nintendo game he is really into at the moment.  Dave nods as though he understands and my boy quickly rushes back into the house.  Dave was unphased and said nothing.  Mom, feeling like I had just witnessed an oddly autistic run in, felt the need to apologize and say the obligatory, “My boy is on the spectrum and social skills are not always our strongest skill.”

I was surprised when Dave asked, “Autistic? He is?”

I love those moments.  No one understands why they are followed with tears welling up in my eyes but I do.  I get it because I know where we started.  I tell Dave that indeed he is and he is also a marvel, a bit of a mystery and is defying the odds and his original bleak diagnosis.  I tell Dave I expect no less from my middle child and I push for him to be as equal to his siblings as I can help him to be.  I have three kiddos, and I have the same expectations and dreams for each of my children even though they did not start out with the odds equally in their favor.

His placement in regular education has not always been a foregone conclusion.  Listening to him talk was something I did not know I would ever hear.  Seeing him take fourth place in the school spelling bee was something I thought you might have made up to tease me.  His success did not always walk in with confidence.

The first day we walked into our special education kindergarten class it took me all of about three seconds to FREAK out.  I will give kudos to the teacher at the time who did not think he could be successful.  I get it.  Back then, we didn’t talk much, we didn’t listen much and we had some awful melting down and push back behaviors that were NOT okay for regular ed kindergarten.  Even so, I could tell, despite our challenges and despite the ever so dismal evaluation the teacher had in his folder, that he was already the smartest kid in the room when he stepped through the door on Day One.  I could already see the teacher letting him run off to the train table and computer cubby to busy himself when he was done with his lesson so that she could spend time with kiddos who needed her more.  I could see, from what I knew about his cleverness, that he was going to love it here and never ever do academics again.  He would be in play-toy heaven.  It was not a good feeling.  Although I understood that we were probably not ready for the rigor of regular ed, I clearly didn’t feel like he was ready to have massive play time in school at a time when academics were supposed to be starting out “intensive”.

Ohhh noooo.  This was NOT going to work.

And bless the teacher’s heart because I don’t know that she could have done anything differently.  There are just so many kiddos of varying abilities in each class that most teachers, even the best ones, are pulled in some tough directions.  It is also simply indicative of these little spectrum kiddos that, even with evaluations, it’s hard to define the abilities of a child who is non verbal and somewhat unsocial.  It’s just one of the tougher realities of autism in the early years. It’s hard to pin them down educationally but so easy to overlook potential that is not screaming out at you.  Ours was by no means screaming out to anyone but mom.

So, being the me that I am, I started to bargain with all parties involved.  If you let him into regular kindergarten on a trial basis, I will be whatever you need me to be.  I’ll be your aide, your prep mom, your gopher, you name it.  If you will take a chance on my guy, I will be your everything.  And it worked and I was and we all did it together, flying by the seat of our pants, for my boy.  That’s where it all started.  Wanting more, expecting more, pushing for more than what is easy or acceptable.  There were a lot of moments when we did not have a map, a guide, a graph to follow.  Sometimes it’s easy to believe the experts and give up or believe that because they cannot show you now, on the benchmark day, that it is not going to happen.

That is so far from the autism truth!

Right then and there I learned to STAND UP because here’s the crazy thing…all kids on the spectrum are different.  Some will overcome crazy obstacles and reach heights that doctors and educators say are impossible.  Others won’t.  But the truth of the matter is that you won’t know until you try, until you push, until you set high goals and even fail now and again.  We had our failures, goodness YES, we had our failures but the very saddest truth for any teacher or parent is giving up or never trying your hardest or taking a chance.  Failures can be overcome but giving up before you ever try cannot and that’s just a lose-lose for everyone.

I will also admit that I am probably in the minority when it comes to behavior.  I don’t believe that bad behaviors and meltdowns are a given.  While it’s a given that spectrum kiddos are more prone due to their sensitivities, coping skills and strategies can be taught to kiddos so that they can overcome many behavioral obstacles.  It’s also a big truth that behaviors are more easily changed when kiddos are younger than after a decade of reinforcing and entrenching behavioral patterns.  In my experience over the last decade, with routine, structure, consistent expectations, positive reinforcement and consequences, behaviors can be both lessened and overcome.

My boy used to spray snot on his teacher, scream for two hours straight, he threw one lovely wooden puzzle through his bedroom window in a rage and he still will try to exert his will on occasion if he believes he can get away with it.  We are 13 now and it has been a long and consistent road to get to where we are.  I know my boy is more prone to sensitivities but I also know melt downs are preceded by triggers that if they are watched for can be averted before they escalate.  Part of the process has been teaching him how to better recognize his frustration when it is building, give him some tools to help him remember how to use his words and then to help him advocate for himself.  I have also found that counting to FIVE centers him when he is angry.  I count slowly and get even a little slower if I am nearing five and I think he is simply in need of more time.

The way I see it, no matter what his academic capabilities are, the boy will not be allowed in a typical educational setting if he cannot get his behaviors in check and control himself. It is not okay for him to throw fits when he does not like something and expect to remain in regular ed.  Kids like that go to “alternative placements” and that has never been okay with me.  I have heard other moms say it’s just part of his “make up” but that has never been good enough for me.   That is why I have spent so much time focusing on getting his behaviors under control and helping him to be able to regulate his emotions and frustrations.  Let’s face it, behaviors will easily eclipse academics and if he can’t keep himself in control, he can’t learn and he probably won’t be allowed to stay in regular ed.

I thoroughly, 100%, believe discipline can be positive and it cannot be mixed with anger.  I never spent a bazillion dollars having experts come into my home for behavior therapy.  In the end, I am the one in the house with him all day so I can’t hand the discipline over to anyone else.  The buck has to end with me as the authority in the house.  And, honestly, it’s not rocket science.  The best kind of discipline comes in the form of consistent and firm expectations as well as natural consequences.  I also believe “extras” are earned.  Electronics (our favored activity) are not free in my home.  They come after all the “work” is completed.  Work, for my son like my other children, consists of making his bed, cleaning his room, taking his dirty clothes out, putting clean clothes away, taking a shower, brushing his teeth, listening to his teachers at school AND doing his homework.  It is only when these are complete that he can have electronics.

After ten years of fighting it hard every day, here’s how I see autism in a nutshell:  you can either stand up to autism and push back or you can sit down and let it roll over you.  It’s that simple.  If you want your child to be part of the mainstream…KEEP PUSHING them in that direction.  There are a lot of philosophies and practices when it comes to autism and I don’t go for a lot of the flavor of the month stuff.  Maybe it’s because I’m a bit old school or because I try to let common sense and a want to protect my son rule my decisions.

I believe in early intervention with my whole heart.  Not because the younger years are the only time when you can make a difference but because the differences and strides you can make during those early years are more profound.  And, honestly, I am not saying any of this is going to be easy and it’s certainly not going to be restful, but it’s going to be worth every single step along the way.