Since my son was diagnosed with Autism 12 years ago, I have witnessed many changes in the Autism community. Some of the changes seem great, such as self advocacy (until those self advocates start trying to speak for everyone), increased awareness, and increased funding for research.  Some of the changes don't sit well with me at all, such as the camps/cliques, politics, and the shunning of those who have experience loving, raising, and/or caring for someone with Autism.

     I was there when the rates were 1 in 10,000.  I was there when ABA therapists had no central training or certification (it is a bit better now), when Secretin was the new "miracle" cure, when the Feingold Diet reigned supreme, and when far too many people pronounced it "artism" and were only connected via "Rainman".  I was there when DMG and megavitamin therapy were just getting started and when the majority of those diagnosed with Autism were considered to have Classic Autism  (today, only 17% of those on the spectrum are diagnosed with Classic/Kanner's/ Infantile Autism).

     Fortunately, I was just getting my feet wet when parents were still more concerned with getting their children the help they needed than finding someone or something to blame.  The term "person first" wasn't even around, yet we were putting people first by not playing politics with our children.  I am especially glad I was there when parents were free to feel sad, afraid, or angry and could proudly proclaim that we wish for our children to be able to live independent lives and make their own decisions regarding career, housing, food, clothing, and recreation...we call that ability to make those decisions a "cure".  Today we are made to feel ashamed for wanting such things for our children.  We are told that we should proudly accept that our child will never be able to do those things and to wish for such is to not love our child.

     Today, parents are picking sides and celebrities.  Vaccines/Genetics, person with autism or autistic person, funding for research or funding for services, Behavioral or biomedical, western or holistic, cure/accept are all cliques/camps that parents must join.  I was recently told that my experience is basically worthless because my son was diagnosed over a decade ago.  Yes, that is right...I have no idea what I am talking about because I have experience!  I must have stopped reading anything a few years after my son was diagnosed.  I can't possibly be up on the new treatments because my son's diagnosis is so old.  It is enough to make my head spin.  It is enough to make me angry.  It is enough to make me walk away.

     I no longer wish to wrap up my parental identity with the word Autism.  Instead of a parent of a child with Autism, I am going to try being a plain old parent for awhile.  I can have faith in science and hope in a miracle at the same time.  I can believe in a genetic weakness with an environmental trigger.  I can question the vaccine schedule without blaming vaccines, doctors, or drug companies.  I can love my son and still want him to be able to make his own decisions in life.  I can support funding for education, medical treatment, research, services, and adult care all at the same time.  I can use behavioral and drug therapy without giving a rat's arse what anyone thinks of me.  I can do all of this because I have experience, because I stay current on science, and because I love my son with every fiber of my being. 

     So I am saying goodbye to the politics of Autism.  I am saying goodbye to those who need to point fingers.  I saying goodbye to those who point a finger with no science to back up that finger.  I am saying "Go f*ck yourself" to everyone who dares to question my love for my son. 

     Good bye cliques, Good by politics.  Hello, Alex and Leyla!

    Mommy Dearest said she had a plan.  She was going to be there for the birth of my sister's baby.  Then, two weeks later she was going to fly here to visit with us and our new baby.  Shortly after that, she was going to fly to Texas to see my brother's step son graduate high school.  Can I just say that my mom didn't even stay for my whole graduation ceremony and it was just a 20 minute drive from her house?

     I got a call a few days before Leyla was born.  Mommy Dearest had to buy a laptop because her desktop broke and the laptop would allow her to "visit all the grand kids" more often.  I asked if this purchase would put a damper on her plans to travel for all three celebrations and she said it probably would.  Poor Mommy Dearest could only find time and money to visit my brother and sister. 

     In July, my husband and I ran into a bit of a financial crisis of our own.  Mommy Dearest volunteered to pay a small bill for us.  It killed me to take her money.  Of course, after she paid the bill she offered up this little Gem...I was going to come see you next week but since you need this money..it will have to wait.  Funny how MD never even mentioned a visit until this point.

     Earlier this month, she calls up to say she wants to visit for my birthday.  Stupid me.  My head told me but my heart had hope.  Last weekend, MD calls to let me know exactly which flights she planned to take and what she wanted to do while she was here.  I suggested that she take an earlier flight because she has to work that evening (tele-commutes) and if her plane is even a few minutes late or if traffic is bad she might not make it here in time to clock in.  I did some checking and the earlier flight would give her plenty of time and it would cost the same.  Mommy Dearest said she would call me back when she bought the tickets.  As of yesterday, no tickets.  It seems the earlier flight has a two hour lay over and that is just not acceptable to her.  Mommy Dearest is still pretending she plans to visit but there are no tickets in her name.  Apparently, holding Leyla and playing with Alex isn't worth a two hour lay over.

     Mommy Dearest once told me something she disliked about her own mother.  It seems Grandma Dearest never liked the father of a grandson so she would not love the grandson.  No matter what C. did for her, he and his children barely registered on her existence meter.  Funny thing...Mommy Dearest does the same thing to me and my kids.  She hates my father and resents my existence.  My mom also loved to bring up how my father blamed his mom for the Vietnam War.  Funny thing...my mom blames me for something my brother did.

     Mommy Dearest has said thousands of times that she hates "mind games".  Well, I don't understand why.  She is the Supreme Queen and Champion of the mind game. 

     She will never change.  If my near death while having Leyla didn't spark anything in her, nothing will.  I have choices.  I can love her and let her continue to torture me with her games while telling myself that she loves me the only way she can...from a distance.  I can also remove myself from the torture by walking away.  Both choices suck and both will hurt me and my children.  Neither choice will upset my mom's delusions.

    

     In an effort to keep myself informed about all aspects of Autism in the news, I did my regularly scheduled Yahoo News Search.  What I found made me sick to my stomach.  I am still in tears.

     A Teacher's Assistant captured video via a mobile phone of Lori Davis, a special education teacher, screaming and slapping a nonverbal student during a state assessment test.  This person, if you can call her that, didn't have a momentary lapse.  She knew what she was doing and she did it because she knew the child could not report the abuse.  How many times has she done this before?  We will never know.  I would bet good money that she won't even lose her license over the matter.  Some judge will give her probation and order anger management.  She isn't likely to get her job back with the district so she will wait out the "heat" and relocate to find a job in another district.

     *edit* Lori Davis had her lawyer give a statement.  Her excuse was that the child had been known to pinch, hit, or kick in the past.  She had asked the school for help and got none.  She has diabetes.  Now I get that some people with severe autism can be quite aggressive and it can take a lot of energy and effort to get them calm.  That being said, I saw the video up close and the child was just sitting there.  Had the child just ended a melt down, why bother to slap him while he is calm?  And since when does having diabetes excuse physical abuse?  No matter what happened before or after the slap...the slap was WRONG.  The teacher had options, regardless of the situation she found herself in.  She could have called the office for back up.  She could have spoken to the administration and parents during an emergency meeting.  She could have gone to the other side of the room and collected her emotions.  She could have realized that she isn't cut out to teach special education.  There is never an okay time to slap a child in the face.  And I seriously hope that assistant who filmed the slap said something to someone at some point instead of just sitting there. 

     My heart just aches for the student and his family.  Parents are constantly told how carefully educators and staff are screened and trained to work with our kids.  We are often accused of being paranoid and over protective of our children.  During IEP meetings, we are looked at as the uneducated buffoons who are unrealistic about goals for our children.  It is often implied that we do not know our children or their conditions as well as the "professionals".  We are supposed to blindly trust that our kids are well cared for while in the hands of bus drivers and teachers.

     Think this is an isolated incident?  Texas and Illinois have awful reputations for the abuse rate in their state run institutions.  Illinois actually lost their federal funding due to allegations of abuse and neglect within their largest institution for the developmentally disabled. Illinois still has not closed Howe, even though 32 residents have died under suspicious circumstances in the past 3 years.

     Over the summer, Alex started crying at home.  In the middle of his crying, he stopped and shouted "Stop that stupid screaming!".  As grating as his crying spells can be, I have never spoken to my son like that.  He cried all weekend and each time he would stop himself in the middle with the echoed scolding.  I wrote letters to his school and his bus driver.  The bus driver admitted it was her.  She swore it would never happen again but I just stood there trying to not hit the woman.  I spent the rest of the summer trying to reach Alex's out-placement coordinator in an effort to arrange for me to supply the 120 mile per day transportation with reimbursement from the district.  You see, this is the second bus driver who has been caught being verbally abusive to the students on my son's bus.  Two bus drivers in one school year.  Clearly, Rich Lee Van Lines has a completely different idea of "carefully screened and trained" than my own. 

    I have read one report that 90% of all developmentally disabled people will experience abuse or neglect at some point in their life.  Why does society stand by and let this happen?  Why aren't people (other than the parents) outraged by this sort of behavior?  How many people need to experience this before something will be done?  Would it help if it was some celebrity or high powered politician's child?