Do "live" people even exist anymore?

Technology is great, but it seems to come at the expense of not dealing with live people anymore, or any assurance that something you say, actually makes it's way to a real person, with real concern.  As I lamented that I was probably in haste to complain about MTS still not contacting me (though a week doesn't seem all that impatient to me, given what transpired), I just now received my response from them:

"Thank you for taking the time to submit your comments to us. 

It is important for MTS to hear from customers regarding their 

experiences on public transit. 

Please, be assured that the appropriate action will be taken 

concerning the incident you have reported. 

Feel free to contact us in the future regarding your transportation 

needs.
 
 
MTS Customer Relations Department"

If that isn't a standard automated response, then clearly, the extent of 

my complaint fell on deaf ears.

Guess maybe, I set my expectations to high with regard to discrimination 

and prejudice.

Can't wait to run out and purchase that pass for my son to line their pockets!

*End Rant* 

Wishing I could label this "MTS, part deux"...........

But that of course, is not the case.  I should aptly name it "Discrimination ignored as usual" or "Ignorance gets a free pass".  I don't know exactly why Im shocked that my email has been ignored over their ridiculous behavior; or maybe rather it's just akin to rubbing salt in the wound.

Im sure when I email them again about last weeks little excursion, they will no doubt tell me they're overwhelmed with volume, it got lost in the shuffle, blah, blah, and super blah.  Im aware these things happen from time to time, but unless this behavior has become prevalent (and has yet to be exposed), I find it hard to believe that my email didn't stand out against the garden variety other complaints. 

Maybe Im just bitching in haste, and that response will magically appear in my inbox within the next few hours. 

This kind of situation, is just one of the many daily instances that make being a parent of an Autistic child so laborious.  So much of our time is consumed having to advocate, defend, and try to amend others wrong doings.  It really shouldn't have to be this difficult, but I suppose many another disability faced such obstacles in it's infancy before awareness and acceptance were truly is widespread. 

It's exhausting.  It takes away from what we really need to focus on; our children and helping them to navigate this often unkind world.

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.

Soap box moment

Im having a moment after stumbling onto a post about "safety vests", or more commonly referred to as a "harness" on a Wrightslaw blog.  Such devices can be a hot bed of debate amongst parents and professionals, with people on either side of the issue.  I certainly have my opinion, and well, many people might just tell me to take a hike in my support for and belief in there use;  that there akin to torture devices for children.

I could go into the length the reason's why I support there use (and that my child has been in one for many years now, as well as the majority of students that I work with), but simply put, I don't need to.  My child, my choice.

The point in my rant?  The main gist of the woman's commentary was how pissed off she was that her children are now being forced to wear safety vests on a daily basis.  She had explained that previously they were used at driver discretion, when her kids were having a "bad day", otherwise the standard seat belts were usually utilized. 

I must be missing something here.  Your not opposed to there use, just not on a daily basis?  I'll play devil's advocate for a moment, and pretend I think what may be going on in her head to come to this belief that safety vests are on a "as needed basis".  Ya, in theory, children with disabilities don't always have behavioral episodes.  They may need to learn their own self control, and sensory regulation when navigating life.  Some days are good, and some days are bad.   But like any other proactive intervention (though a "harness" may not seem like it), it has to be implemented consistently, to be completely effective.

What if, the driver or aide misses the escalation phase, and can't get a safety vest on your child safely?  What if your child (or children in this case) are so escalated that they injure the driver, aide, or another student?  How would you react if your child/children was injured due to an un-restrained child that was having a behavioral episode?

So many "what if's" to consider.  Also consider that children, special ed or not, still have guidelines that they have to adhere to when it comes to transportation.  I agree 100% that transportation is more often than not a broken system, with less than adequately trained staff, who jump at the smallest infraction.  I live it on a daily basis.  With that being said, they do have guidelines they have to follow, and if the policy is that a child is to be harnessed at all times, then they can no longer use their discretion in deciding the when, and how.

Would I want such a device to be used based off their opinion of the situation..........that would be a resounding "Um no, not on your life"!  Leaving it up to their determination sounds much more like a restraint situation (as the blogger was suggesting) than the consistent use of the device on a daily basis.  And I might add, that seat belts are essentially the same thing, only slightly easier to operate.  Most children can get out of a harness given very little effort (as wonder boy has shed his harness and made it out the window into traffic before).

Maybe Im just over protective, and tend to air on the side of caution.  Caution that I am very well aware of his capacity to injure others on the bus, and himself, should he be given opportunity.  If you were o.k. with the use of a safety vest on your children previously, Im going to guess your well aware of their potential yourself, and should maybe not take this as a personal attack by transportation.  They have a responsibility to all students on the bus, and keeping them safe, whether you feel the change in policy is appropriate, or not.

Disabled or not, we are responsible for our children's actions, and with that comes some less than desirable decisions at times. 

Easter Sunday shake up: Autism, Dachshunds, and Earthquakes revisited.

All things considered, Easter this year went off more calm, and peaceful than many a previous year.  Part of this is due to family having been in Europe for the last few weeks, and that there would be no Easter dinner at Grandma's house; we had to fly it solo at home.  Many of us know the trial of one's patience when it comes to visiting family with an Autistic child in tow, and just how draining such events can be.  Where as our home's can often feel like a prison (as we find ourselves confined to prevent sensory meltdowns and the like), on some holidays, it can be just the safe haven we crave.

Our Sunday dinner was met with only a few quick protests due to food preferences, and was relatively more sedate then any other typical day of the month.  It was a huge welcome change.

Dinner was served and consumed, and all had their appropriate "lounging" positions attained to try and digest the ridiculous amount of food that was just eaten.  

That was until shortly after 3:30 pm, when our whole world was literally "shaken up".  

Being a California native, I've been through and earthquake or two.  Always an interesting experience, but usually not one of much note, till yesterday afternoon.  Between my employment history, I have practiced the earthquake situation more times then I care to count (roughly 40 times).  Thankfully, the man was better equipped for the "real deal", because in my panic, I just froze up as our whole entire house swayed and ebbed so fast and hard that I thought for sure it was coming down.  

Once we crawled to our respective doorways, Aspie and two Dachshunds in football holds, I thought for sure that the worlds largest meltdown was about to occur.  Between the deafening roar of our windows rattling, and items flying off shelves, all I could think was next the dogs are going to start barking, and the boy is going to scream like he's never screamed before.  

In what felt like an eternity, but by report was only thirty seconds, the answer became very clear. Only one short "Im scared" and a bit of tears in the boy's eyes, and little else.  The dogs never barked, and the boy never had a meltdown.  It seems that we as the adults, we're far more shaken up by the experience, then everyone else.  

Can't begin to explain how in shock I am at his response, and how proud I am that he pulled through the experience so bravely.  The neighborhood neurotypical children could be heard all around to be much more agitated by far, then my little aspie.  Maybe his disability is a blessing in disguise. 

 

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.