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?

In which I piss in your Cheerios

I've simply  heard enough of this particular argument.  Lambaste me, call me evil, call me what you will, but I can no longer tolerate this pity party. I am one of you, albeit slightly different, and your becoming an embarrassment to what I hold sacred............

 One fine example.

Proposed teacher salary pay cuts.  It's a really popular and heated topic round here.  It's all over our multiple newspapers,  nonstop board meetings, and even to be heard as a conversational topic in some local pubs.  I think possibly the only thing that could compete in notoriety would the "Occupy" movement in this county.

I am a teacher. I am a Special Education Teacher.  I am a Special Education Teacher with a special needs child of my own.  I am a Special Education Teacher who works with the most severely affected in the county.

I teach Non Public.  I teach at the most restrictive Non Public setting there is prior to institutionalization.

I make at least $18,000 dollars less a year then the public teaching sector.  I have no union, no union contractual minimum raises, and no union protection.  Our raises are based solely on merit, and in the last eleven years we have been subject to five pay freezes because the budget didn't allow for them.  Given the current budget crisis, everybody got a flat two percent pay raise, even if they deserved much more. 

I have had my classroom budget slashed by seventy five percent of what it use to be.  I have had to take on more responsibility, work more hours, figure out ways to be more creative when it comes to still writing meaning full goals that will assist my students (sans the budget money to accomplish those goals), and go back to the drawing table to recreate the whole classroom schedule when it comes to Community Based Instruction and how to access that without the previous money that funded it. 

I still pay over eight hundred dollars a month for medical benefits for my family, with costs continuing to rise every year. 

I still put in a minimum ten hour day, every day, without the luxury of overtime.

The public sector teachers have the audacity to complain about proposed pay cuts,  the roll back of their contractual seven percent salary increase, and that they begin to contribute to their health benefits cost to save our schools from insolvency.

Are you F***ing kidding me?  Take a look around at our economy.  What makes you so special that you think you don't need to make concessions like most of the rest of the country has?  How many people have been downsized, laid off, become unemployed, lost their retirement, their homes, and those that did retain employment, not take on heaps more job responsibilities while their companies adjusted to the lack of money? 

I know my household income was cut by half, the fees for my daughters school jumped ten dollars a unit, my insurance premiums tripled, and I now help support my once very well to do parents.  What makes you any different than the rest of us that have had to give up so much?

Teaching is an insanely difficult and time consuming profession.  It's certainly not for everyone.  But it is a calling.  And with any job you may perform, you need to love what you do because it's what you want to do in life, and not base its merits on the pay you receive.  Such thinking will only set you up for the feelings of dissatisfaction that you publicly complain about now.  Waisting all this effort on being pissed off that your going to  have to become like the rest of us surely must take away from your effectiveness in your job currently. 

We all have to compromise and sacrifice and some point and time.  Some of us have made that decision long ago when we entered the field because we wanted to do more for our community, and not for ourselves.  Some of us have been offered all those extra dollar signs to work for the public entity and turned it down because we know that in the long run we wont have as much impact of the life of a student; which is why we went down this road in the first place. 

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.

The "new" push for inclusion

I've spoken of this topic before, and just this week, it seems the topic is picking up steam here in the land of sunshine.  Two different articles for two different locales, though the content and message they are trying to convey is essentially the same........as well as very pretty sugar coating.

First and foremost, the push for inclusion (at least in this county) has very little to do with trying to provide FAPE and LRE for it's students.  There are some isolated cases where that is true; but few and far between.  This is all about our budget issues and funding.  Some might find my view jaded, or overly opinionated, but I work in this field, and have a child in this system.  I have experienced first hand both sides of this push, and in both instances the word "cost" has been discussed with me.

The first article this week highlights many concerns that I had already mentioned.  The most important being adequate training of public education staff.  Most of them receive crash course special education training, that is far to generic in nature, if at all.  They are left highly unequipped to serve the population they are working with, which is in no way a better option for the students they serve.  They are not prepared to receive the influx of students being pushed back to a public campus.  On the flip side, these students are having to experience a massive transition with little warning, and staff that do not understand how to help them through this change.....

And let me elaborate on that just a little more.  Have administrator's really thoroughly thought out exactly what a child with moderate to severe disabilities has to go through with this change relative to their unique needs?  First you abruptly transition a student to a new school.  Secondly, in most cases, you are placing this student in a setting with no familiarity, several hundred more bodies, classes that change every hour (for those in Jr. through SR. high), and a myriad of other sensory overload situations.  If a student is truly ready to transition back to an LRE, this is a process in which they need to be slowly integrated into, with support staff from their current site to help both the student and the new staff understand each student individually.  Were these students able to handle a public setting with ease, they wouldn't be in a non public setting in the first place.  Third (and often most importantly) you must ensure that the receiving staff are ALREADY trained in the specific disability, as well as having whatever accommodations, visuals, etc. prepared and accessible for said student upon their arrival.  To do any less sets both the staff and the student up for failure, or at the very least, lost educational time and progress towards behavioral and academic goals.

This point was brought up in the first article by a few parents.  That they were given little to no notice that this change would happen, and that their children suffered because of it. 

One of the big themes of this first article was about non public settings cost, and strategies employed in said settings i.e. reinforcement systems, and ancillary staff.  There were many gripes about reinforcement systems being to costly, unacceptable, and one commenter who is a para educator spoke of it as it being completely unnecessary (evidently she forgot her applied behavioral analysis classes, or wasn't paying attention).  You  have to truly know the population, to understand why reinforcement is so crucial (and you need to re-examine yourself and realize that your own life if fueled by "reinforcement", nobody works for free).  I will agree that it can be overused, and not phased out soon enough in some settings, and for some students.  This does not negate its value. 

As for the cost of ancillary services in the non public setting, there are a few truths to that, and some points that have been overlooked in the comparison of non public vs public setting.  In this county, there are some non public sites that do charge separately for speech, occupational therapy, counseling, etc.  But there are also many sites that include these services as part of the daily rate charged to the district.  Many sites that include the cost also fully utilize these departments for more than just pull out sessions.  They use them to host inservices, create materials (for teachers who are already working 10+ hours a day), assist with behavioral situations, playground supervision, and any other place a need is to be met.  They, as well as the other educational staff on campus, are paid far under what the public setting pay rate is because of the unique needs of the students higher staffing ratio, and required specialized materials.  Though this article claims the opposite to be true, that is not the case in this county.

On to the second article, which in many ways, just irritates me further.  This one was highlighting the success of a particular new program and a very specific student on a public campus who came from a non public program.  I say very specific student with emphasis, and will leave it at that.  This program sells itself as innovative and forward thinking into integrating students back into the public setting (under the guise of inclusion and meeting the social needs of these students).  This programs design was borrowed from the non public setting in which this specific student came from.  They of course do not elaborate on that point, but do berate the non public settings for not having the opportunity for socialization with typical peers.  They tout the success of this student in their new program, when in reality, it was the non public setting that laid the ground work for this student.

I am a firm believer in inclusion and LREFAPE, Administrators need to take a step back and really examine what is in the best interest of each individual student, and if this sudden trend is really going to provide that free and appropriate education they are supposed to be providing.

As usual, my two cents on the subject.

"I know you are, but what am I!"

I feel like I'm destined to be trapped in that cycle of elementary level thinking.  You would think (or hope) that if you are of the same profession as another, they would respect you and your experience.  I find more often than not, I'm talking to a brick wall (and I was incorrect to assume that my son's previous placement just had teacher's of that caliber).

I could pick it apart and come up with a billion different possibilities as to why this continues to happen.  But in reality, I grow so tired of it being on my mind, and affecting my ability to perform for my students.

Maybe its that I teach Non Public?
Maybe its that I teach the most severely affected in our county?
Maybe its that I have only ten years experience under my belt (which in most situations is more years than those I'm dealing with).
Maybe I'm viewed as a threat?
Maybe its that I'm only viewed as the parent?
Maybe its that I speak up and question multiple aspects; occasionally offering suggestions of what has worked in the home?

Maybe............I'll never have the answer.

When the system fails...........

Just a quick "quip" about my personal experience, and a recent article I just happened upon.

My son's school district is having massive financial issues, and really, this isn't new news if your a resident of this county.  It also isn't surprising, given our current economic climate (or how I like to view it, the toilet).  Tough choices have to be made, no one is going to be happy, and we all have to give up a little; I accept this (though I've been doing that for years, long before the current economic mess).

Were this to be a truly solid educational model, that operated efficiently, and served the students within it well, I would have little to say on the subject; nobody likes change, that's a given.  But since my experience has been one of constant struggles to attain/maintain even basic services, and compliance with IDEA/FAPE (to the extent that my son has made little to no progress in the last five years academically), I find it a very bitter pill to swallow that I should stand for more to be taken away from him.

And then, you top it off with a carefully placed quote saying that risking litigation is acceptable, to reduce services in the special education model further?  A program in which this district is more than often not fully providing in the first place, and the only reason to date there hasn't been more litigation is because of the burden of cost on parents to proceed legally?

Worry not, I'll be standing by "pro pers" should this district proceed to further impact my son's education.  Cost shall not intimidate me from seeking what he is legally entitled to.

Keep up that smug attitude; I guarantee it will come back to bite you in the ass!

Look before you leap; the politics of Special Education

For some time now (most aggressively this last school year), there has occurred some major shake ups with respect to special education here in this county.  In theory, it's supposed to equate to nearly a complete overhaul of the system.  As with any issue where tax payer dollars are involved, there will certainly be political agendas behind it.  While change is often for the greater good, the message conveyed behind why the change is necessary, often gets lost, muddied, or was simply an "excuse" to satisfy the people, and hide the real intention behind it.

Based on a report of analysis of the current educational model here, many suggestions were made, that are in fact very legitimate, and in desperate need of change.  They highlighted the disproportionate amount of special ed. students being segregated to special day classes, separate sites, etc., as well as some huge inaccuracies in particular ethnic groups being labeled as disabled, when in fact those issues stem from social maladjustment. 

These are important key points to look at.  Students need opportunity to be placed in the least restrictive environment and to be educated with their non disabled peers to the maximum extent appropriate.  The other students have the right to be educated with their non disabled peers, and not be subjected to profiling based on their color, where they end up inappropriately labeled as something they are not.

It all sounds fantastic and beneficial in theory.  It's as if someone waved a magic wand, and suddenly the district woke up.  Were it not to coincide with a massive budget gap, and a failing economy, it would seem pure in intention.  Some may say that's just killing two birds with one stone, and you're being to cynical to see the forest through the trees.

Let's examine some of the underlying issues that are prevalent already with the old model, and how they will one, continue to affect the new model, and two, due to the budget, create a massive failure of the new model.

Adequate training.  This is a huge issue in general.  Those classified as special education staff, often lack even rudimentary knowledge in behavioral theory.  They may be sent to a workshop on a particular topic sporadically, but it's often a band-aid at best.  They are not given the opportunity to thoroughly learn the nuances of behavioral theory, and put them into practice.  This isn't just at the parapro level, this is true of the teachers as well.  So, there is a behavior department, which is much more thoroughly trained, has access to creating visuals, and comes out as support to these individuals, to teach them what they weren't given the opportunity to learn.  Once again, sounds great.  Except that within this district there is a growing sense of disdain towards the special ed. population, and the current crop of staff that believe that these students don't have the right to have behavior, or that they as staff, shouldn't have to put up with the level of intensity that some children display.  So the behavior department tries their best to train them, and show them the error of their ways, and give them the tools that will make these students successful, though they are often met with hostility, and refusal by the part of the staff.  They refuse to implement these tools, and ultimately the students suffer.

These are people who are supposed to be best suited to work with the special ed. population, who actively made the choice to work with these students.  They lack the necessary skills, and desire to learn how to help these children.

Now, those issues go mostly unchecked.  The district decides it's going to adopt a new model, and begin mass integrating most of these students back into regular education.  To exposing them to staff that have zero experience or training with this population.  The simplest answer would be to begin training the regular ed. staff prior to the shift, so that these students don't fall by the wayside (or even training them at all).  This is all set up under the guise of providing these students with the least restrictive environment, and trying to be in line with what federal regulations mandate.

But, no such training is taking place.  Add to that, once some students are placed, the request for support can take several months to arrive, meanwhile, once again, the student suffers.  This does not smell of genuine concern to mainstream a child, but rather a means to an end to ease budget woes.  Educating students in special day class, separate facility or even non public settings is extremely costly.  Some non public settings can range between $166 to $235 dollars a day.

Were the district to be actively training and transition planning for this influx of students, this cause would seem genuine.  I find it hard to swallow that this is their actual intention; to provide for the greater good of these students, and not to simply save money.

Even more interesting is that these decisions for this new model come at a time when there is no superintendent, and a blood bath taking place amongst the school board.  Budget cuts,  poor economy, no actual leader, political infighting; very interesting timing indeed.  Change is vital to progress, when the intention is genuinely designed to affect the greater good; not place further constraints on an already broken system.

Maybe I just have a biased opinion from personal experience working in conjunction with this district, and having a child not being served by it adequately.  Maybe I have a skewed view because I have the luxury of intensive training, and staff who genuinely believe in what they do, and are always willing to learn new things. Or maybe, it's just the skeptic in me, that screams this is not what it seems, don't let them pull the wool over your eyes on this issue, while these students get lost in the maze, and will only further regress.

They say patience is a virtue, though I hold little faith that patience will show with time that this move will work out for all, and is a heartfelt sentiment on behalf of the district that is just simply experiencing some growing pains.

My two cents on the subject.

When those in charge of compliance, are ironically out of compliance

The special education system is often like a labyrinth at times, and can create enough frustration, that you almost give up on the whole process.  Opinion and interpretation are at times, not relevant to the regulations or law, which is just one trapping of the system.  I'm okay with that though; it's true of all life situations.  Where the law is clear cut though, is a whole other matter.  There's a system of safeguards in place that are carefully laid out, and the what, why and where of receiving help. 

Cool beans, right?  Well, that is if the people in charge of those safeguards actually adhere to them, or aren't guilty of misconduct themselves.  There's a chain of command for such situations, because unfortunately people fail in their duties at times, and occasionally you have to seek help from someone above them.  But what happens when EVERYBODY in the chain is out of compliance? I mean that is aside from you developing a permanent eye twitch, and wanting to pull your hair out on a regular basis.

My very unfortunate personal example:  First, you discover there are compliance issues with your child's IEP, and you then address that to the principal (check).  Principal admits "Oops" (though it's their oversight to ensure such issues don't occur), but does nothing to correct it.  Next step, you discuss this with your ombudsperson, and file a district level compliance complaint (check).  Meanwhile, about fifteen other compliance issues emerge, so you again, attempt to contact your ombudsperson, to begin the process of filing more compliance complaints (check).  You diligently await your first compliance complaint investigation to be completed, and the resulting investigate report that will contain the corrective action (check).  But you still haven't been able to amend the other fifteen issues that have occurred, because said person never bothers to get back to you, or give you access to the paperwork to file to correct it all.  After a certain period of time, this person is now out of compliance for not getting you either the compliance paperwork, or concluding the compliance investigation, and informing you of the result (check).

Is that ironic?  The person in charge of compliance, can't manage to be in compliance themselves.  What's even more ironic, is that you can't get a hold of the person to determine who you report them to for their failure, because they are the omnipotent power in charge of all issues within the district. 

Meanwhile, your child suffers in this broken system.  And because you do things such as file complaints over legal issues (not your typical "I'm an overprotective parent that can't be satisfied because you didn't wipe his nose 25 times today"), staff begin to view your child unfavorably, and will even go so far as to create behaviors.  They even accidentally send you an email discussing how they are going to willfully be non compliant of the law, because they don't care for your previous actions with regard to filing compliance complaints (and well, if you can't get a hold of the person in charge of these issues, your left talking to thin air).

It's a sad state of affairs.  Like these children don't have enough to face everyday.

It situations like these that makes us such a litigious society.  It's one thing when it's only one link in the chain that is weak; it's another thing when it's the whole entire chain.

Judge not lest ye be judged yourself

Religion aside, it's a simple mantra to live by.  A general "moral" rule of thumb.  Yet, there will always continue to be those people out there who will do exactly that, though fail to see their wrongdoing in the situation.

My unfortunate example of this for the day: Another blogger parent out there with more on his plate than he and his wife deserve, but doing the very best they can.

He is very open and honest about the journey they're on, and how difficult the road can be on even an hourly basis.  He shares the story that far too many of us are familiar with in the struggle to raise special needs children.  For many of us (and I know speaking for myself personally), it's a great inspiration as well as comforting to know that we are not alone in this.

Parenting, is always a hotbed of debate.  Since none of us were issued an instruction manual upon birth, we all have differing views on the specifics of raising a child.  Add to that a special needs child (or in some peoples case, multiple special needs children), and surely, the shit is going to hit the fan at some point.  War's alone could rage over parenting till the end of time.

So recently it seems, some people have chosen to accost him, over the methodology, and just in general, about the way he is fathering his children.  Going as far as to make threats that he is abusive, and the age ol' threat of involving authorities in the matter.


First and foremost, any parent who takes the time to create a blog in reference to their children in attempt to connect with other parents in a similar situation, certainly is well invested in meeting that child's needs.  One does not seek advice, were they to be neglectful, or unconcerned about their children.  This should come as basic common sense although often, common sense is non existent in the general population.  


Secondly, people are allowed to have feelings, and frustrations.  You do not need to agree with them, or approve.  We're human, and it happens to all of us.  No parent has always been a hundred percent chipper all the time.  With that being said, that does not suggest that an individual is abusive, or does not care for their child or children.  We all fall down.


And last but not least, until you've been in this situation yourself, you have no basis to opine, let alone make accusations.  This is where passing judgment eventually is going to come back and bite you in the ass!  You may read the blog and surmise your take on what life is like with special needs children, though that in no way makes you an expert, or gives you the right to suggest abuse.  If there were posts that suggested neglect, abuse, or anything other than genuine concern for the children, then I certainly missed them, and whole slew of other readers.  


I could expound for years on this topic, as I've had the displeasure of being in this situation myself.  Special needs is exactly that, a child who requires things to be done differently.  There is a myriad of modalities from proactive to reactive and everything in between.  Unless you either have a child like this, or your educated to work with the population, you haven't the faintest idea what is right, wrong, or what it takes to raise children like this.  Behavioral theory is a vital component for ALL children to be successful.


And sadly, the end result of people who interfere and make threats is that they diminish the child himself as well as the parents.  You are not seeing the who and what that makes him up and instead passing judgment on what is a legitimate disability, and the caregivers so desperately trying to provide the best care for him.  These are people facing unreasonable odds, and still take the time to try and help others out there faced with the same situation.  How is that abusive?  It's commendable, and you be ashamed for being such a vacuous waste of space in our society.  What good are you providing in general, let alone for these people?

There is a reason one should not judge unless your willing to stand up to scrutiny yourself and prove you are infallible.  Until such time as you can do that, your should just keep your comments to yourself, and let others live their lives with out being exposed to your ignorance.

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.

To blog, or not to blog..............

A question I am asked occasionally, is why do I not blog more?

For me, this is a mixed bag. Some can be attributed to the fact that I lack the time (given what I face in the home, and all the focus and energy that requires). Some is the fact that there is no real privacy on the internet, and information can lead back to you and particular opinion's you express *may* or *may not* affect the view of your child, as well as your professional life. And then simply, there's those pesky naysayers who make it their mission to disagree with everything you say, and add to the upheaval that is already your life.

Add to that, the time already used with the 5,000 social networks, feeds, and other miscellaneous sources being utilized to stay ahead of the game, with respect to what is going on with this particular disorder/methodology/legal logistics, etc.

There is the occupational hazard of being involved in the special education world, and though you say your work will remain at work, you find yourself bringing work home to eat up what precious little free time you may have available.

There are countless hours spent reading, crafting, and drafting emails with regard to your own child's progress, educational program, behavioral intervention design, and the research required to be your own advocate, and align your commentary with legal statutes and provisions.

In a nutshell, there is very little time to post anything meaningful, coherent, or even worthy of interest to other people out there. Some of us are spent.

What was the whole point of this rant, you say? Aside from justifying my bad blogger tendencies (as some would say, if your going to leave it idle, remove it), I was reminded today that sometimes, you need to make that time.

I ran across a blog recently of some parents who like many of us are, very isolated and feeling alone in their daily battle of raising special needs children. They detail what many of us experience on a daily basis, as well as far too often the fallout, and lack of support that we often desperately need. Cue naysayers in 1, 2, 3, 4...................

Let me just make this bold assertion of my opinion, and be quite clear about what I don't want to hear. We may seem negative. We may seem as though we are complaining about what we were handed with these special needs children, and all that entails. We are often lost, and tired. We often have no support available for us to keep from hitting the lowest of lows. We do have small victories, and joys with regard to our children; we often miss them because we are beyond stressed, and over worked. We do not always voice those joys, because often people look down on us for thinking something so small was worthy of noting (the classic double edged sword we face daily).

I find this behavior in general irritating, and it keeps me away from blogging as well. I will say though, until you've lived it, you really have no legitimate opinion to express.

So whereas I may not become a regular blogger from this point forward, I do realize the need to try a little harder. Parents like us are the only support system we have out there, and the only people who will truly help us through our darkest days.................

The wheels on the bus.........come to a screaching halt!

Simply put, bus drivers, they irritate me. Many years of my life have I waisted cleaning up the mess they create, simply because they are under-educated, or ill trained when it comes to the special education population.

My district in particular, touts the "excellent" and "intense" training they go through to become excellent providers of service, and with the highest regard to your child's needs. Really? Seems I've missed those drivers (for the last eight years and multiple placements).

Daily, I find myself confused, disheartened, and down right pissed off at the treatment, lack of professionalism, and omnipotence, in how they deal with the population. At what point during their supposedly so thorough training did they learn behavioral theory, the multitude of facets that come with each and every specific disability (and co-morbidity as well), sensory processing dysfunction, and a slew of other factors that frankly, I'm to tired to list?

It enrages me that these individuals who at most, may spend 2-2 1/2 hrs a day with a particular student, seem to not only know so much about them, but can also in a split second determine what is, and what isn't a manifestation of the child's disability, and there for, consequate them (based on their own belief system, not a carefully crafted behavior support plan, that they refuse to implement).

Let's take a look at these children's support aides, or their teacher's, and how many hours a day they spend with them, and how less reactive, and punitive they respond to minor infractions (being irritated by a child's verbal stim is never an excuse to chastise the parents into feeling so guilty they start privately transporting their child to school, how pathetic). If ever someone was going to be tired, impatient, or potentially annoyed, it would be them (and mind you the typical bus driver in my district makes a salary greater than an aide does, but with significantly less output of work).

What about us parents, who have to bend to your every demand, and complaint because you illicit a response out of our child on a daily basis because you simply are not intelligent enough to realize YOUR FEEDING HIS NEGATIVE ATTENTION SEEKING BEHAVIOR (and failed to implement anything proactively on yourself to prevent you from being so petty).

I mean really, what is the point? Individuals who either can't tolerate all that comes with your typical special ed population (which is a huge list, you don't get to hand pick what behaviors you prefer), or lack the knowledge and willigness to learn, create a huge dis-service to those that they supposedly serve. It goes beyond being counter productive; it's down right insulting.

Some classic examples I have witnessed recently (and just for this school year alone):

"He's to silly, and makes to many animal noises" MR student, non verbal
"He winds up the other kids with his duck noises, and then I can't concentrate" MR student, non verbal
" I do not have to take this kind of verbal abuse!"ED/HFA student
"He threw a paper muffin cup, and I was in fear, and had to duck" ED/HFA student
"He plays with his spit, and it smells" AUT student
"His music is to loud coming from his headphones" Downs student

These are very typical behaviors for their respective conditions. These are children who are placed in the most restrictive placement available in the county due to their often extremely aggressive behavior/self injurous behavior. Your nit picking things like verbal stimms, and proactive stratigies (preferred music and headphones to distract from NAS behavior), when you could be dealing with much worse?

I personally say, get a new job. Your are obviously not equipped to deal with this population, and you make it evident everyday with your ridiculous overly reactive behavior, and negativity. No matter how severly affected a person is, they still can sense disdain in your voice, and dislike on your face.

So much for the happy little nursery ryhme about everything great and fun about riding the bus all through the town!