What gives?

Paperwork after school is a must when your child does not speak.  Funny thing is, the paperwork never matches what the teacher says to me when I pick my son up from school.  Why is that?

Why is it that the form that is filled out throughout the day never indicates anything good or bad that the teacher mentions to me?  Which is correct, the teacher or the paper?  It's the aide that writes the paper each day, and when I ask about the activities that the aide did with my son for the day the teacher says "I don't really work with him for that", or "the aide usually handles that part".  So what gives?  Which is the one I should pay attention to considering the information conflicts.

I've confronted this issue before in case you are wondering why I haven't just asked "why does this information conflict?"  I was met with so much defensiveness, discomfort and stuttering that I felt I'd asked a politician about a scandal.

Next paperwork issue brings more confusion.  My son, if you're not familiar with my book or my posts, is blind, developmentally disabled, and severely autistic.  He does a lot of pre-braille activities with his V.I. specialist, a lot of mobility exercises with O&M, and regular classroom activities suited to him.  So why is it when I open his back pack I occasionally run across coloring pages on flat pieces of paper with no braille on them at all?  I'm trying hard to be understanding, and I get the idea of inclusion, but this classroom is where my son is because he is unable to be mainstreamed.  He is unable to participate or WANT to participate in other rooms.

So........this brings me to my point.  I am trying to imagine what benefit my son got while being forced to hold a crayon in his hand while someone else manipulated his hand and pressed it against a piece of paper with a drawing on it that he cannot see, with a color that he doesn't understand.  This is an often enough occurrence to warrant attention.  Honestly, I don't see the point in torturing him to do this one time, much less multiple times throughout each semester of school.  Isn't he in the "special needs" room where things are supposed to be adapted to suit his learning abilities?  Why did my son not deserve an activity that he could learn something from other than "hey lady quit sqeezing my hand" or "why do people think  this is fun?". 

Every time I think that I am too harsh or too hard on the people that work with my son I am shown just one more reason why I can never stop being harsh.  I've set up a meeting at the school with the teacher and aides to discuss some other "more beneficial" activities for my son to take part in while the other children are coloring.  If no one hears from me for a while, I'll be back as soon as I post bail for ranting and raving on school premises about incompetence and ignorance ........possibly laziness as well.

This has been yet another rant from the author of "Autism and Assholes"  Not the typical autism book.

Fish Bowl Syndrome

The Fish Bowl Syndrome

 I sometimes think that there must be some sort of really twisted cosmic rule that all families of disabled or special needs kids have to live out their lives in some sort of “fish bowl” for all the world to see, tap, shake, point at, piss in, criticize, change, or just ignore and dump out.  It seems to me that before my son was born with a disability I could’ve let my other children juggle knives and no one would’ve ever said a word.  I notice that the children that live down the street go virtually unnoticed to other adults in the neighborhood and their parents make decisions for them on a daily basis without scrutiny.  Oh sure, I had times before my youngest was born that I felt like some other person was telling me how to raise my child; but this was more like “are you going to let them jump on that trampoline? Or are you sure you want to send them to that school?  Never was it “I think you are not qualified to raise this child without sending him to a home” or “Why don’t you just give him up for adoptions” or “the huge and very intrusive  specialists staff and I will be at your home in 30 minutes to observe how your son plays in his own home, is that ok?”  I remember how it felt to be able to be a mother without the entourage of critics and professionals or spectators.  Have a disabled child and all of the sudden the solid walls of your once safe haven home are now glass and every portion of your life is now on display for all the world to see, debate, dispute, disregard, or dissect.  Comments are now not only it seems allowed, but required.  Interventions now loom in the minds of family members.  Conversations now exist about your family only to discuss this new ‘tragic’ event and its dynamics and nowhere in this does anyone discuss this new cute sweet child or who he looks like or takes after.  Now it’s socially acceptable for you to be told how to raise your child.  Now it’s not out of line for people to make comments that would never have been uttered before.

To the assholes out there I say this,  I plead this;  So few see my son as a human being but only as some sort of object that stands for the word disability and disorder.  Look at his face, look at his personality; it exists there and he feels it all just like the rest of us do.  This is a child whose entire family has had to fight relentlessly his entire life just to allow him to be treated as something other than a symbol of blind/autism.  We want to live out our lives the same way everyone else is allowed to live out theirs.  Let us exist in our realm of normal and stop interjecting because God knows that there’s nothing completely normal about your life either.

Dear School

Dear School Special Needs Class

I have an idea!  How about you STOP worrying about which one of your procedures I didn't follow over the summer making life difficult for YOU during the school year with my son and START worrying about the things you are screwing up with my son that I will deal with for the REST of my LIFE!

Are you not supposed to be in the business of helping teach these children how to navigate themselves through the life that THEY are going to have?  Or are you instead trying to live in your land of delusions about what YOU think they are going to do?  Whose agenda are you trying to fulfill?  I know it certainly isn't mine, and by the way my son bangs his head on the car window every time we approach the school and shuts down completely right after school I can pretty much guess it isn't his either.

My son will not have the life that YOU have picked out for him.  He will be living here with ME, NOT you for the rest of his life.  He will not be attending college, he will not be getting a job or getting married.  He will be here.........with ME trying to enjoy some quality of life.  Quality of life.........does this mean ANYTHING to you?  Is there no where in your superficial little procedures that you can find room to see that quality of life is important for ALL types of life......including mine and my sons. 

What you screw up by not following parent recommendations, suggestions, and demands will last forever in my home.  This includes the tiniest of things that you deem unimportant.  This includes things you would never even pay attention to if not for BEING SPECIFICALLY brought up by the parents already.  oh wait!  You didn't even pay attention then!

Please think about this while you are enjoying the movie my son and I will never attend, going on the vacation that we will never enjoy, speaking to your kids and BEING SPOKEN TO by your children, and getting a long nights sleep that my son and I will also never enjoy.  I know that you don't make a lot of money doing this so it can't be that you're here for that reason, so what is it?  To prove what a miracle worker you are and dispel the rumor that parents of special needs children know what they're talking about?  Certainly it is not because you were "called" to help the special needs children of the world because if that were the case, you'd be listening to their parents!

Now it's our turn

Ok, the media has had their fun, now it's my turn. 

All of the negative press about the "stresses" of raising an autistic or autistic/disabled child are running wild on the airwaves and internet filling the general public's heads with horrible distorted ideas of what goes on from day to day in the minds and hearts of these "special needs" parents.  Apparently, some people out there have decided that it's a good idea to feel sorry for special needs parents that have harmed their own children.  Some people out there have decided that it is the "stress" of raising children with special needs that would drive a person to murder or abuse.  What, you couldn't find a poor beaten up old lady to blame so you decided on the special needs child as the scape goat?

I can't speak for everyone so I'll speak for myself and my family.  My son is 14, low functioning autistic non-verbal, and completely blind.  He is considered severely intellectually impaired.  To say that our days are "challenging" is an understatement but not in the way the media portrays it.

I wrote a book called "Autism and Assholes" for this very reason.  The world has such a twisted view of not only these kids but of their parents as well. 

Every day you can find forums, discussion boards, facebook, twitter and various other means of communication and networking full of what the rest of the world might call "pissing and moaning" or "venting".  Let's set something straight right now; this is just venting.  It is healthy, it is normal, it is important, and it is human.  No where in any of these discussions will you find a human being that is upset at the existence of their child.  No where in any of these places will you find a parent that places blame on their child for life's little difficulties.  I'll tell you where most of these people (including myself) do place the blame for most of our difficulties; ignorant media coverage and the general population that follows these opinions like sheep.

What we need is support!  We do NOT need speculation about our state of mind.  We do NOT need judgment of our every breath and every move.  We do NOT need "wanna-be" experts coming up with every idea in the world of what we're doing wrong.  Who made the rest of the world judges of our lives?  Who made the rest of the world experts on our mental state?  Who made the rest of the world fortune tellers foreseeing the woes that would soon become us all?  I'll tell you who.......the people responsible for stereotyping special needs care giving and special needs children. 

I can speak for my own life and tell you this; There is no one person in my life that has taught me so much but my special needs son.  He is the person responsible for the changed person that I am.  The thoughtful, kind person I thought I was before he was born was just a package prepared by society showing me the politically correct way to behave.  NOW I am the real deal capable of TRUE unconditional love and understanding, patience, and compassion.  NOW I see what I didn't before.  NOW I am capable of so much more.  It is because of him that I am a better person.  It is because of my son that my life is more fulfilling.  It is because of my son that I love more deeply than I ever did before.

Defensive School Staff

I have four children.  Three of them are grown and all of them went through the same school system that my youngest now attends.  I have called, over the years, so many "parent teacher conferences" for each of them that I couldn't possibly begin to count them.  Given that all of those meeting requests were met with "absolutely, I'll meet with you on _____ date", or "sure, what time can we talk?", why is it a request of the same nature in my sons special needs class is always met with some sort of procedural guideline B.S. being spouted out by whichever staff member at the time feels they are threatened by my request for a meeting? 

I am continuously told throughout the special needs education system that "we all need to work together as a team".  So why is it that there is always at least one (sometimes all) team member that feels threatened at the request for a meeting?

My son is blind, severely autistic, and developmentally challenged.  He is (in his own way) begging my husband and I not to send him to school every morning.  He tries to go back into his room, he tries to just stay in the bath tub all morning, he tries to hide behind the couch, he tries to run the other direction when walking to the vehicle to drive to school.  I was asked " well how do you know it's school that he doesn't want to go to?"  my answer in my head is "well asshole, I know it is school because if I tell him I want to take him to the store to run errands, he walks to the truck himself.  When I tell him we are going to the Post Office, he hurries to the front door.  If I tell him we are going on an outing, he helps get himself ready to go." 

First of all, why question the parents motive of calling for a meeting to figure out why he is so resistant to attending?  Isn't this the parent working in the best interest of the "team" mentality?  I assure you, if I weren't trying to be diplomatic and follow the system, they would know it because I wouldn't "request" a meeting, and I wouldn't say "their might be a problem".  Instead I would say,  "Ok, which one of you assholes is differing from the plan with my son and making him scared to come here?"

I have learned over the years (as I answer my own questions from above) that the person that gets defensive is usually the one that has differed from the ARD, the parents requests, or the child's indicators of abilities or tolerances.  This is the easiest way to find the vigilante!  Call for a meeting!  Not an official meeting........just a "get together" in the classroom to discuss what the problem might be.  Whichever one of the specialists or classroom staff members starts stuttering first or stating that they just don't understand is the one you better focus all of your attention on in the meeting.  Someone's gone rogue at this point and taken your child's progress into their own hands with their own agenda. 

In my son's case, it's "give them an inch; they'll take a mile".  If a specialist finds my son will tolerate one activity that they thought he wouldn't, all of the sudden with no real time for him to adjust, they're off to the races with their own little eager beaver agenda of how much they can get him to do!  Now they can't see the forest through the trees and their over eager approach leaves my son feeling inundated , overwhelmed, and shut down. 

According to them , however, "things are going just great".  Do you know why they think this?  Because by the time the meltdown, shut down, or digression from their activities happens, they are long gone from their 30 minutes with him and are not there to witness the fallout that the regular classroom teacher or the parents see afterwards.............after my son has processed the upset.

I am no expert.  I have 14 years experience raising my son, however, and I like to use the "bucket" analogy to describe some of his tolerances and behaviors. 

I can explain........

Let's say that your body has inside of it an empty bucket.  This bucket is called "tolerance".  We'll call stress "water".  Now every time you experience stress of any kind, a little bit of water is poured into your tolerance bucket.  Some days, it might not take much "water" to overflow your "bucket" on your drive home, because your "bucket" was already almost full from the stress at work.  In my son's case, I hear therapists say all of the time........"well I know I can MAKE him do this because he's done it lots of times before".  This is the statement that makes my head spin the fastest.  Hello?  Bucket?  His bucket was already full when you began this activity, he tried to tell you by pulling away quietly, he tried to tell you by turning his back, he even tried to tell you by punching his head..........what did you do?  You pushed him further because "you know he can do this". You pushed him further because it is more important for you to complete YOUR agenda than it is to actually REACH this child.   Well, genius.........now he can't do anything at all for the rest of the day because you have overflowed his bucket by ignoring his communications and left him overwhelmed and completely shut down.  So how much progress was made for this day in school?  None.  All progress gone;  In fact, we can erase the progress that was made for a few days prior and probably the progress that would've been made for the next few weeks because he has lost the ability to trust that you are "listening" to him. 

"Autism and Assholes"

Constant Judgment

I wrote a book called "Autism and Assholes".  Why? Because since the day my son was born with complete blindness and later developed severe autism, I have become keenly aware of how many assholes are truly out there.  I excluded one major asshole in the book, however, that I feel the need to mention now.  The Media!  The Media Assholes and psycho-analyzers out there spewing piles of garbage about Parents of Special Needs children as if we were all a bunch of tightly bound fuses ready to go off at any moment. 

Constant Judgment is what we face every day.  Our kids have a meltdown in a store.......the whole world's watching.  Our child has a difficult day in school..........the whole school staff is watching.  Our family outing goes haywire from a frightened little one.........the whole world is watching.  All eyes are on us at all times.  No anonymity here!  No, not for us!  Thanks to the stigma that all of the psycho babble about "crack-pot murderous parents" we'll have even more prying eyes to tolerate.  Everyone watching & wondering "is that child acting that way because they are abused?", or "is that one of "those mom's" that I'm going to read about in the news one day?" 

No sir, no normal parenting privacy allowed for us!  If it's not a stare of disgust, or a look of quandary, or a glance of ignorant curiosity, it's a look of mistrust, of wonderment of our mental state and "will we be able to hold up".

Let me assure you we will hold up!  We already have! We already do!  We do this everyday and we do it with love, kindness, patients and gentleness.  We do it with the same unconditional love for our children that anyone else has for their children and probably much more.  We do it all  with an unwarranted jury and judge watching us!  We work harder,  sleep less, pay more, study more, learn more, battle more, cry more, and are judged the harshest! 

We're told we deal with more stress than anyone in the world.........yet the people making this statement don't look in the mirror to realize they are one of the major causes of stress for us!

Now the powers that be and babblers of great gossip have decided to take this up a notch and turn up the glare of the microscope even further.  They've done this by spewing nonsense about "understandable frustration" relating to parents murdering their disabled / autistic children.  They've done this by "victimizing" the very murderer.  They've done this by showing compassion and sympathy for these monsters that commit murder against their own children. 

Now the rest of the world feels an obligation or at least a small urge to "watch out" for those poor special needs parents that could against their own will SNAP at any moment and just decide to "OFF" one of their children.  Let's put this into perspective folks!  A murderer is a murderer!  Anyone capable of murdering their child was capable of doing so whether that child was disabled or not; autistic or not.  This is not mercy, this is not a crime of motherly love, this is NOT an excusable action or at all warranted!  This is just murder.  Thanks to the multiple postings of sympathy and concern for parents feeling such desires, the fish bowl that me and the rest of the loving special needs parents already live in just got even more transparent for all the world to look at and judge.

Is this stigma really what you think will help us?  Too be judged more fiercely and trusted less?  To have  our mental and emotional stamina measured by a the general public that knows nothing about us as human beings or for that matter our love for our children and capacity to care for them? 

The only thing that will help us is for you to call Murderers what they are...........Murderers.  Not victims of circumstance.  What excuse would you have given them if their child had not been autistic or disabled?  Would you have worked so hard to find compassion for what "they" must have been going through to make them commit such an act?  Would you really have the rest of the world believe that special needs parents believe they are victims of their own beautiful children's existances? 

Let's call Murderers what they are!  No more excuses!  I'll keep calling out the Assholes as I see them!

Cabin Fever

Cabin Fever

I’m bored!  Everyone knows what it’s like to hear their child say this after a long day at home with nothing to do.  Now think of the exact opposite behavior.  That is my son.

If my son was allowed to, he would remain in my house wandering through his daily routines and their appropriate spaces day after day after day and be content to never leave the house again for the rest of his life.  This would be perfect!  That means nothing would EVER change!  Wow!  That would be just awesome!  For him yes, but not so much the rest of the family.

So as you can imagine, if you have a child that prefers being at home and has great difficulty in public, you spend a lot of time trying to figure out how to entertain yourself at home.  So, I live at home, I work at home, I parent at home, and my entertainment most of the time is at home.

This makes for some crazy people sometimes.

After a few years of raising my son my husband and I realized that there would be a lot of places and things we could not go and do.  So began our process of collecting everything we needed to enjoy most aspects of life here at home.  The weight room was made complete over the years, the movie collecting began and accumulated to massive proportions, the board game cabinet filled up quickly with all the newest and funniest family games, the video games were purchased, the yard games installed, the at home sports fields designated, and life went on.  Very happily life went on.  After all, everything I need is here, right?  I don’t have to go anywhere at all really.  I even work here!  Great!  Simple and easy.

That’s true right up until you want to pull your hair out if you have to look at the same walls for one more minute. Suddenly out of the blue with no warning at all you feel like the walls are closing in on you and that your childhood memories of being “so bored you could die” have come true and you will indeed die from not leaving your house or ever seeing another human being again.

It sounds so dramatic!  It sounds so desperate!  Well, every once in a while, it truly is.  When the outings are so few and far between that you really don’t remember when the last one was, it starts to wear on you.  So when my family and I see fit to venture out and brave whatever meltdown occurs in the process, it’s a really, really big deal!  This is a special occasion all on its own!  Being out away from the house is like a gift straight from heaven.  So out my family and I go excited about every little nuance we encounter on our great journey! 

I am in absolute rapture watching the whole family enjoy themselves and everyone involved is careful to do everything my son needs to prevent upsetting him and having to return home early.  At this point every member of the family at the same time feels the same emotion.  Appreciation.  Appreciation for absolutely everything around us.  The parks, the stores, the restaurants, the music, the water, the sidewalks, the traffic;  every piece is enjoyed.  This is when the whole family starts spotting assholes!  Look at this pile of assholes out here acting like they don’t understand how lucky they are to be in that store shopping!  Look at this pile of assholes dining in that restaurant like its just some sort of regular event!  Look at that pile of assholes over there not even smiling or enjoying themselves while they buy that ice cream and walk in the park.  How dare they not appreciate this?  How dare they make this wonderful outing of ours seem ordinary or usual.  How dare all of them stare at us in amazement of how much fun we are all having wandering around the city shopping center!  Assholes!  All of them are assholes! (haha)

For more check out the book "Autism and Assholes"