Fallout from the storm...........

Most of us involved in the world of Autism have at some point suffered some form of fallout with regard to our children and their special needs.  It's our coworkers, our friends, our neighbors, and unfortunately at worst, it's from our own family.  Never an easy path do we travel.  I feel the only true understanding can come from those who live it every day.  It's often a dark lonely place to be to begin with; only to be compounded when the only support system you had, just walked out the door.

Sometimes it's simple differences and disagreements.  Not everyone can understand, tolerate, or is willing to learn about the subtle nuances that make up a special needs child.  To those outsiders, it can simply be overwhelming, or it can conflict with their own set of rituals, and behavior,  that that they fail to realize they posses themselves. Profoundly ironic, but a stark truth nonetheless. 

Sometimes, the error of their ways would have the same impact, and be just as inappropriate, were it to be a neurotypical child that was involved.  Sometimes, such fallout occurs simply because there are very clear cut laws that stipulate what kind of behavior one is allowed to have around ANY child, and they fail to see the error of their ways.  And it's really rather sad when such individuals find that following the law, shouldn't interfere with the family, when they are the very one's who put you in said position because they lack control of their behavior.  

It's unfortunate when lines are drawn in the sand, and you're left standing on the other side because you're supposedly the one at fault for having a child who is special needs, and those unique needs make others uncomfortable and reasonably lead to individuals having "justifiable" behavioral responses that exceed what even said child displays in a given situation.  Even more unfortunate when said individual is family technically, but not actually part of the blood line (though blood isn't always thicker than water), and can sway so much support for their misgivings.  

It's unfortunate when family believes it was all an honest mistake (when it occurs several times), and you should simply dismiss the possibility that there could be legal ramifications, loss of your career, and most importantly, loss of your child.  That you should ignore those possibilities, and continue contact regardless of the outcome, and to not do so, makes you out to be the bad person in the situation. 

Well, sometimes, we just have to protect our children, regardless of who they are, and regardless of how that makes family feel.  Whether it is understood or agreed upon with regard to the law.  Whether they fail to even see the simple moral implication of the wrong that was committed.  Whether it destroys what once was, as during times of extreme stress, people often show their true colors.  

The storm has passed, and I'm still waiting for the dawn.

When staff are the bully

Ironic, isn’t it.  Those in charge of ensuring children aren’t subjected to bullying, often times are the actual bully, or working in concert with the aggressor.  Sadly it’s becoming common place in the special education world, and far too often it goes unchecked until something really horrific happens.  Partly because staff with the intention of malice exploit the very nature of the student’s disabilities, relying on their cognitive functioning level to complicate, or negate believability. Partly because administrative staff have a tendency to turn a blind eye because they are more concerned with staffing and human resource issues that could arise from addressing instances in which bullying has been suggested, or concerns relayed to them.

Parents often lack credibility in the eyes of staff, and are accused of being overly emotional, irrational, or not properly educated in the ways of disability.  Where there are certainly instances in which the above is true, it does not negate all claims made on behalf of their children. 

This is a system that is stacked against you, in which you rarely are the victor, and are often left picking up the pieces of damage that happens to your child, or in some cases, the continued harassment your child is subjected to simply because you suggested bullying may have occurred. 

When you bring up concerns about staff interaction with regard to safety, and professionalism, and suddenly instances of involuntary seclusion, denial of basic civil rights such as access to the bathroom on request, and students being encouraged or allowed to physically assault your child routinely, what do you call that?  Over active imagination?  Coincidence?  Happenstance?  A simple misunderstanding times multiple incidents?  Or is it exactly what it sounds like?

What is it when you work in the same profession, have more education, and know exactly how situations are supposed to be handled, yet your words are worthless?

Why do your tax dollars support a system that can often do more harm than good to the child and there is so little recourse to right injustice?

Where is the intrinsic motivation of the professional to do there job well, properly, and with pride that they are working in the best interest of the child?

How have we come so far since 1975, yet in so many ways, little has changed?

Who is going to ever right this system so that it actually does what it is intended to do on behalf of these children?

My voice is often lost in a myriad of meetings, emails, and grievances, with little to no real resolution..........how then will my child’s voice ever be heard, or for the children who have no voice?

One step forward, ten steps back.

After an exceptionally challenging school year I've come to the conclusion that it's time for change.  Between personal life aspects of the boy and his education, the economy, and my general energy level, it's time to go back to the drawing board.  I had planned on going down this road in the future; just not this near future.  Such as life.

I really do believe that being a Special Advocate is my perfect niche.  I have a fierce justice complex, and the tenacity to back it up when those less fortunate are being screwed over in the mix.  Too many years of games and flaming hoops with regard to my son have created a take no prisoners attitude in me when it comes to the law.

My bigger issue is if I have it in me right now to go back to school.  My time is extremely limited between my own classroom, the boy, the neurotypical daughter I'm putting through college, and that each day only allots 24 hours to get it all done in.  I'm in great hope that I just feel like I've been put through the wringer because this last year was the most physically and emotionally demanding that I've encountered in eleven years; only time will tell with that one.

Normally, I wouldn't even consider taking this leap with all that is my life.  As usual though, change is necessitated through some less than desirable happenings within the public system in my neck of the woods, and that shit aint gonna fly with me.  These are changes that will not benefit the greater good, and they are very swift moving with this new agenda.  While it will always be my responsibility to advocate for my son, and my students, I feel compelled to serve more, as this will affect most children in this district negatively.  And we all know that once one entity starts to make major change, the rest follow suit.

Details will remain in my own head for now; call it paranoia, but since information I receive is confidential in nature, and was not intended for my eyes, I'll just keep it all to myself.  It's sufficiently compelling to cause me to further overwhelm myself, as well as invest a chunk of money that I could certainly use elsewhere just to rail against this new proposal (which should speak for itself).

So, one step forward for me..............because I cannot allow them to go ten steps back.

No matter how you slice it, Vaccine debate is always a war zone.

Now days, everyone has heard of the vaccine debate.  It's more front and center, then many other factors of Autism Awareness unfortunately.  Beliefs divide friends and family, and often garner enemies in the blog-o-sphere.  For many, it's an emotional battlefield, where no one is a clear winner.

My view lands on the pro-vaccine side.  I could give countless examples of why I feel that way, but that really wasn't the intention or point of this particular post.

I was recently pseudo-lambasted on another blog over such a debate.  This particular post was in reference to a very difficult decision a family with a history of Autism and vaccine reaction, and where to proceed to next.  There was reference that bends the direction of being pro-vaccine, and some coverage on how the whole debate should be scientifically dead.

Let me preface by saying that I'm an avid reader of the anti-vax nonsense.  On a daily basis, I subject myself to their twisted logic, endless rants, and fervor for their belief that I can only compare to that of common zealotry.  It pains me to no end (and often leaves me wanting to jab a sharp implement into my temple to simply stop the headache I have received from reading their tireless tirades).  I, unfortunately, have a lot of experience with their views on the subject of vaccines, but more so, their view on Autism.

Fast forward (or rewind back to the blog posting I was reading).  The blog author of this particular post, was asking the question as to why it is this debate is even still alive.  Well, don't ya know, I inputted my two cents with the experience (emphasis on my experience, not to be confused with their belief system).  I commented that in my experience, anti-vaxxers need something or someone to blame, and are often "mad" that they didn't get the child they wanted.  Mind you, this is their opinion, and if you read many of their blogs, you will find much in the way of evidence to support my assertion.  Hence why I made the "mad" statement.  This is their interpretation and view, not mine.

Autism in general comes emotionally loaded for those of us either involved with, or affected by it.  There are far too many factors to list why this occurs.  Jumping the gun isn't fairly uncommon when people read posts related to the topic, and glean simply one or two action words that send them into hostility or offense.

The first commenter to take my post out of context, relayed that in her personal experience she had never come across a single parent that was mad their child had Autism.  While she is obviously fortunate, I cannot say the same for myself.  I have had the displeasure personally, and as I stated before, such beliefs are alive and well in the anti-vax forums.

Second commenter, reiterated them same sentiment.  Blog author then had to feel as though he may have offended some people by saying previously that he understood the view I had mentioned on certain parents out there feeling anger for their children being Autistic.  She then responded by saying that she understood that was not his view, but that the statement had come from a comment made by someone else (that someone else of course being myself).

Here, is where emotion enters the picture, as often happens with this particular debate.  Evidently, my statement that there are other parents out there who are "mad" that their children are Autistic, and not that this is my particular view on the subject gets muddied.  I at no time asserted that was my sentiment, feeling, or opinion on the topic.  Often times emotion leads to cherry picking of a particular statement or two, or confusion of the context.

As I have mentioned, spend some time on the more popular anti-vax website, blogs, boards, and forums.  You will find statements such as "Autism stole my child's soul", "Autism kidnapped my child", and "Autism stole my child's future".  These are their statements, not mine.  Such statements are indicative of anger and hostility about the condition.  They are not child centered; they are complaints of loss on the parents part.

I need not clarify my view on my son's Autism, but since we're here, and people want to misinterpret what I say, might as well make a go of it!  Am I sad that my child has a disability, of course.  Am I sad that he will not be afforded as many options, opportunities, and experiences as a "typical" child will be; absolutely.  I am however, in no way angry about it.  I get angry at the ignorance, and prejudice he often encounters.  In retrospect, his disability is almost a blessing in disguise.  I have a "neurotypical" teenager, who in less than two months will graduate from high school.  Who has been afforded every opportunity to succeed, and have a plentiful life.  Said child, lacks such motivation or concern for her impending future.  In many ways, the issues we as parents encounter with "typical" children are far more difficult than that of a disabled child.  My son will not encounter the typical trials and tribulations of being a teenager, and for that, in many ways I am thankful.

So in the future, I suppose I will have to be more careful how I paraphrase others opinions, so as to avoid having them confused with my own.  It's rather unfortunate, when it seems so clear, but often this is the case when it comes to human interaction; it can result in war, rather than peace.

Public transit individuals not qualified to make a diagnosis

I am still so extremely angry and bothered by yesterday's experience with trying to get my son his disabled transit ID.  The sheer ignorance, audacity, and flat out rudeness of the lady I dealt with yesterday is still reeling in my mind.  Over the years we definitely have had some situations that irritate you, but this one was by far the worst situation I've had to experience.

We had to travel all the way downtown to The Transit Store, which in itself is always a nightmare.  Traffic is horrible, parking will cost you ten dollars an hour (and you still have to hike four blocks or more to get to your desired location), and it's a sensory disaster waiting to happen for someone who is Autistic.  We avoid downtown like the plague (America's finest city, really?).  Never mind that this also entails both of us having to be present to hopefully prevent any meltdowns, and the cost involved with the subsequent loss of work to perform this task.


My students all have transit ID's, and I've been through this process before; it's typically a piece of cake.  Filled out application form, student ID, and an IEP listing federal handicapping code.  Pay fee, take picture, out the door you go.  Yesterday, was by no stretch of the imagination, easy.


We hand all necessary items to clerk/attendant/rude, unqualified, and incapable of reading a simple date transit worker.  First, she argues that there is no date on the IEP.  Really, the date of the annual, the date of the last triennial, or the date of entrance to special ed?  There's many to choose from, and make it quite clear that said disability is evidently not "temporary" (entrance date of 2001 should make that pretty abundantly clear, but maybe Im just being snarky).

Next, she apparently decides (after we point out the dates to her), that she want's to question his disability.  She asks another (much older I might add) transit worker to come over, look at the IEP (because evidently their experience must be limited), and then has the gall to point my son out.  My blood began to boil.  Who the hell are you to point out my child, and look him up and down trying to decide for yourself if you think he is Autistic or not!  Who are you to publicly embarrass him in front of about 20 other people, and pass judgment on his disability and it's validity in your eyes.  What gives you the qualifications to make such an assumption?

Clerk/attendant/rude, unqualified, and incapable of reading a simple date transit worker came back to the window after consulting with said older other transit worker (who looked clearly embarrassed herself for her co-workers behavior), and very curtly said "Go to the next window for your photo", and stomped off.

This whole little display had angered us, and my son even says "Why is everyone staring at me" and "how come she can't read an IEP?" and the kicker was when he said "Im sorry Im causing so many problems".  Granted my son is very high functioning, but appearance alone is not a determination of who is, or isn't Autistic.

We get in line,  take his photo, and wait to get his new ID.  It's spring break, and it's time to begin mobility training; the earlier we start the better odds that he'll be independent in the future.

We thought the whole skirmish was over, and that we'd be on our way in no time at all (ha).  We receive his ID, and in beautiful bold red lettering does it state "temporary ID".  What, and wtf?  Im not new to this.  Disabled ID's for transit are good for five years (temporary ID's are issued for well, temporary disabilities).  When did Autism become temporary?  She couldn't help herself obviously, and in her spite marked our application temporary (according to her ability to "see" my son's disability) .  Was there a supervisor in site to help us with this situation, of course not.

If the ID's were only to be issued yearly, I would suck it up and deal with it; policy is policy.  I of course know this isn't the case, and am pissed as hell that this little trollop had the nerve to be so petty, and unprofessional by just adding insult to injury after her little public display of knowledge.

My only recourse was to email the transit authority, and make it very clear that this issue needs to be resolved accordingly, and that failure to do so will result in a subsequent filing of an OCR action.

Such instances are a travesty to our children, and anyone who has a disability.  I find it repulsive that people can be so ignorant.  I find it even more disturbing that had I not the knowledge of their policies, I would have been unaware of what they had just done to my son.

April is Autism Awareness month, and clearly, we haven't got the message out to enough people yet.

It's Autism Awareness month..........

April begins the month of spreading the word, and hopefully educating people to what Autism is. It seems odd, given the statistics of what the rate of occurrence currently is, that such a task is even necessary. By now, it should have touched your family, friend, co-worker, an encounter in the grocery store, etc.

Maybe it has, maybe it hasn't; maybe you simply weren't listening.

It is evident in the blog-o-sphere, that it hasn't reached everyone, or that what grasp they have on the disorder is limited, or even biased and misconstrued.

There has recently been some upheaval in the blog world over an individual potentially being unaware of the traits of Autism, and labeling the child she came across as simply "bratty" or "over indulged" by her grandmother. Those of us who have Autism in our life, very clearly assessed the odds that this child was Autistic, and that she was simply misunderstood.

And out came the wolves. Multitudes of individuals praising the writer for her disdain with the child's public behavior, the shared irritation they would have felt with the situation, and the applaud for her "normal" children behaving so well with the experience.

This is where awareness, has gotten us almost no where, and we have so far yet to go.

Some commentary was made from the other side (let's indulge and say "our" side), and explained that this child was most likely Autistic, and the subsequent nuances that come with her behavior. This caused some people who had been rather nasty, to take a step back, and re-examine their position. Yet others, wanted to hear nothing about it. These are the people that no amount of awareness, will change their view. They are of the belief that our children are not "normal" and therefor, should not have the same privileges as their children. This is an unfortunate perception in society, and some will even go on to say that our children are a drain on society, and not worthy of the cost or effort required to help shape them to be as independent and "normal" as possible.

First, there really is no such animal as "normal". There is the kind politically correct phrase of "neurotypical". And just what does that translate into: typical. Typical is average. Typical is vanilla. Typical is being awash in a sea of similarity, with no distinction. Typical, is having nothing special that sets you apart from the rest of the population.

"Normal" or "typical" children (and adults for that matter) run the risk of being a financial burden on our society. In reality, more often than not, it is the "normal" individual that costs us, not vice versa. They cost us in taxpayer dollars for incarceration, in increased taxes from failure to pay debt, in public defenders, drug rehab programs, and more examples than I can list. Some would argue then that these individuals are not normal either but then, who is? That would equate to a very small portion of society. Why are their needs and cost acceptable, and not our affected children?

Secondly, what expertise do such individuals have to determine "normal". Are you certain beyond a shadow a doubt that your own child meets the definition? What happens if down the road your child should be affected mentally or physically? Will they still be "normal" in your eyes (will you lie to yourself because not being "normal" is such a travesty). Or will you turn your back on them because they no longer fit your preconceived bias of how a child should be?

All we can do is attempt to spread the word of awareness and hope for acceptance. Unfortunately, there will be some individuals we'll never get through to.

I'll gladly take my atypical, non-average, more flavorful than vanilla child over your child any day. His uniqueness runs circles around your "normal" child.

End rant.