Mutterings Of A Mindless Mommy

The following was posted as a response in my More on Adam Jasinski and the United Autism Foundation entry.  I felt it was worthy of a front-page appearance so am reposting it, in its entirety, here.  Thank you Carol O. for sharing it.

“I want to tell you a quick story before I start. I was walking through hallways, not minding my own business, listening to the conversations around me. As I passed the front door on my way to my English classroom, I heard the dialogue between two friends nearby. For reasons of privacy, I would rather not give away their race or gender.

So the one girl leans to the other, pointing to the back of a young man washing the glass panes of the front door, and says, “Oh my gaw! I think it is so cute that our school brings in the black kids from around the district to wash our windows!” The other girl looked up, widened her slanted Asian eyes and called to the window washer, easily loud enough for him to hear, “Hey, Negro! You missed a spot!” The young man did not turn around. The first girl smiled a bland smile that all white girls - hell, all white people - have and walked on. A group of Mexicans stood by and laughed that high pitch laugh that all of them have.

So now it’s your turn. What do you think the black window washer did? What would you do in that situation? Do you think he turned and calmly explained the fallacies of racism and showed the girls the error of their way? That’s the one thing that makes racism, or any discrimination, less powerful in my mind. No matter how biased or bigoted a comment or action may be, the guy can turn around and explain why racism is wrong and, if worst comes to worst, punch ‘em in the face.

Discrimination against those who can defend themselves, obviously, cannot survive. What would be far worse is if we discriminated against those who cannot defend themselves. What then, could be worse than racism?

Look around you and thank God that we don’t live in a world that discriminates and despises those who cannot defend themselves. Thank God that every one of us in this room, in this school, hates racism and sexism and by that logic discrimination in general. Thank God that every one in this institution is dedicated to the ideal of mutual respect and love for our fellow human beings. Then pinch yourself for living in a dream. Then pinch the hypocrites sitting next to you. Then pinch the hypocrite that is you.

Pinch yourself once for each time you have looked at one of your fellow human beings with a mental handicap and laughed. Pinch yourself for each and every time you denounced discrimination only to turn and hate those around you without the ability to defend themselves, the only ones around you without the ability to defend themselves. Pinch yourself for each time you have called someone else a “retard.”

If you have been wondering about my opening story, I’ll tell you that it didn’t happen, not as I described it. Can you guess what I changed? No, it wasn’t the focused hate on one person, and no it wasn’t the slanted Asian eyes or cookie cutter features white people have or that shrill Hispanic hyena laugh (yeah, it hurts when people make assumptions about your person and use them against you doesn’t it?).

The girl didn’t say “hey Negro.” There was no black person.

It was a mentally handicapped boy washing the windows. It was “Hey retard” I removed the word retard. I removed the word that destroys the dignity of our most innocent. I removed the single most hateful word in the entire English language.

I don’t understand why we use the word; I don’t think I ever will.

In such an era of political correctness, why is it that retard is still ok? Why do we allow it? Why don’t we stop using the word? Maybe students can’t handle stopping - I hope that offends you students, it was meant to - but I don’t think the adults, here can either.

Students, look at your teacher, look at every member of this faculty. I am willing to bet that every one of them would throw a fit if they heard the word faggot or nigger - hell the word Negro - used in their classroom. But how many of them would raise a finger against the word retard? How many of them have? Teachers, feel free to raise your hand or call attention to yourself through some other means if you have.

That’s what I thought. Clearly, this obviously isn’t a problem contained within our age group.

So why am I doing this? Why do I risk being misunderstood and resented by this school’s student body and staff? Because I know how much you can learn from people, all people, even - no, not even, especially - the mentally handicapped.

I know this because every morning I wake up and I come downstairs and I sit across from my sister, quietly eating her Cheerio’s. And as I sit down she sets her spoon down on the table and she looks at me, her strawberry blonde hair hanging over her freckled face almost completely hides the question mark shaped scar above her ear from her brain surgery two Christmases ago.

She looks at me and she smiles. She has a beautiful smile; it lights up her face. Her two front teeth are faintly stained from the years of intense epilepsy medication but I don’t notice that anymore. I lean over to her and say, “Good morning, Olivia.” She stares at me for a moment and says quickly, “Good morning, Soeren,” and goes back to her Cheerio’s.

I sit there for a minute, thinking about what to say. “What are you going to do at school today, Olivia?” She looks up again. “Gonna see Mista Bee!” she replies loudly, hugging herself slightly and looking up. Mr. B. is her gym teacher and perhaps her favorite man outside of our family on the entire planet and Olivia is thoroughly convinced that she will be having gym class every day of the week. I like to view it as wishful thinking.

She finishes her Cheerio’s and grabs her favorite blue backpack and waits for her bus driver, Miss Debbie, who, like clockwork, arrives at our house at exactly 7 o’clock each morning. She gives me a quick hug goodbye and runs excitedly to the bus, ecstatic for another day of school.

And I watch the bus disappear around the turn and I can’t help but remember the jokes. The short bus. The “retard rocket.” No matter what she does, no matter how much she loves those around her, she will always be the butt of some immature kid’s joke. She will always be the butt of some mature kid’s joke. She will always be the butt of some “adult’s” joke.

By no fault of her own, she will spend her entire life being stared at and judged. Despite the fact that she will never hate, never judge, never make fun of, never hurt, she will never be accepted. That’s why I’m doing this. I’m doing this because I don’t think you understand how much you hurt others when you hate. And maybe you don’t realize that you hate. But that’s what it is; your pre-emptive dismissal of them, your dehumanization of them, your mockery of them, it’s nothing but another form of hate.

It’s more hateful than racism, more hateful than sexism, more hateful than anything. I’m doing this so that each and every one of you, student or teacher, thinks before the next time you use the word “retard,” before the next time you shrug off someone else’s use of the word “retard”. Think of the people you hurt, both the mentally handicapped and those who love them.

If you have to, think of my sister. Think about how she can find more happiness in the blowing of a bubble and watching it float away than most of us will in our entire lives. Think about how she will always love everyone unconditionally. Think about how she will never hate. Then think about which one of you is “retarded.”

Maybe this has become more of an issue today because society is changing, slowly, to be sure, but changing nonetheless. The mentally handicapped aren’t being locked in their family’s basement anymore.

The mentally handicapped aren’t rotting like criminals in institutions. Our fellow human beings are walking among us, attending school with us, entering the work force with us, asking for nothing but acceptance, giving nothing but love. As we become more accepting and less hateful, more and more handicapped individuals will finally be able to participate in the society that has shunned them for so long. You will see more of them working in places you go, at Dominicks, at Jewel, at Wal-Mart. Someday, I hope more than anything, one of these people that you see will be my sister.

I want to leave you with one last thought. I didn’t ask to have a mentally handicapped sister. She didn’t choose to be mentally handicapped. But I wouldn’t trade it for anything. I have learned infinitely more from her simple words and love than I have from any classroom of “higher education.” I only hope that, one day, each of you will open your hearts enough to experience true unconditional love, because that is all any of them want to give. I hope that, someday, someone will love you as much as Olivia loves me. I hope that, someday, you will love somebody as much as I love her. I love you, Olivia.

Soeren Palumbo

Soeren Palumbo is a senior honors student at Fremd High School in Wheeling, Illinois, and big brother to Olivia. During Writer’s Week (in March 2007), he gave the following speech to a gymnasium full of his high school peers and faculty and received a standing ovation.

My two posts on Adam Jasinski -  More on Adam Jasinski and the United Autism Foundation and Adam Jasinski from Big Brother Sticks His Foot in his Mouth - have gotten an insane amount of traffic these past three days.  My blog has done more traffic in a single day than it has in the past month.  A few celebrity gossip blogs have also posted back to my entry describing the hastily thrown together website that was registered in mid-December 2007.

Jasinski is becoming more popular than he ever could have imagined.  Autism groups are up in arms trying to get an apology, etc.  The information is so juicy that TMZ.com has even picked it up - Autism Group to CBS: Fire that Retard!  You know you’ve made it to the big time when TMZ writes about you - congratulations are in order Jasinski.  You will go down in history as being an ultimate ass.

I knew I would never be a soccer mom; I tried the tee-ball mom thing for a season and that didn’t work out either.  As of today, I am officially a chess mom.  At the urging of the coach of the chess club at my son’s school, I took Alexander to his first chess tournament today.  He was in the K-3 under 600 category and come in as an unrated player.  His first match was against an adorable and equally shy little boy that looked to be 5.  About 20 minutes later Alexander came out and gave me a big hug.  He told me “I got checkmated.”  I asked if he had fun and he did; he wasn’t sad just happy to see me and said he was ready to go again.  So we waited for the second round.  Mind you we are out in the cold as there is no inside waiting area for parents.  I snuck away during the first round and purchased a chair at CVS and thankfully had a Spiderman blanket in the trunk of my car.

Round two and after about 25 minutes Alexander came out with a big smile on his faced and proudly exclaimed “I got checkmated again!”  Yay for the smile.  We went to lunch; it was a rather quiet lunch, anytime I’d try to engage him in conversation he’d tell me “I don’t know what to say.”  I told him no need to say anything we’d just enjoy our food.  We made it back early so to keep warm we engaged in a friendly game of chess.  The room he was in had 40 chessboards setup so we had our pick.  We chose an end spot and he chose white.  About ten minutes later, with a few helpful moves on my part, he had me checkmated.

The third round was the marathon round.  I thought he certainly fell asleep in the room and outside had it not been as cold I’d have nodded off.  Finally after 45 minutes he comes up and tells me that the round ended in a draw.  Fantastic, Alexander score 1/2 of a point!  We killed about 20 minutes talking to other parents and then the pairings for his last round were posted.  He was up against a boy who’s parents were the other ones there with a Spiderman blanket.  The parents and I chatted a bit as we had many things in common aside from the last-minute use of a fantastic Spidey blanket.  Their son was 0-3 for the day, he was also six, this was his first tournament, and he was also shy. 

About 30 minutes later the parents and I peeked in and noticed that the majority of the board was cleared.  The chess coach for Alexander’s school is the same for their school so he went in to give us an update.  He came out to explain that Alexander had a King and two Queens (thanks to a promoted pawn) and the other boy had a King but was on the run.  The coach explained that he would be surprised if it didn’t end in a draw as it is hard for beginner players to corner their opponent.  About five minutes later the other little boy came out with a dejected look and his face and Alexander was right behind with a smile - he ended up cornering his opponent and came away with a win.  One and a half points to Alex!

There is another tournament next week and then after that the state qualifiers begin.  The qualifiers are five game tournaments and as long as a child earns two points in a single tournament (there are five different ones) then they qualify for state.  I have added a new category to my blog - Chess.

It is official, I am now a chess mom.

Parents on the Autism-PDD Message Board up in arms

Adam Jasinski’s Profile on Reality TV World

Autismville post - Autism:  Brotherly Hate

KYW Newsradio Interview with Jasinski

Quote from Adam - “I am an alpha male. I’m pretty much self-centered. I love myself.”

Quote from Adam’s dad - “I really hope he wins, because he wants to give part of his winnings to the Autism Foundation.”

Here’s what I think, I think this “Autism Foundation” is a front for Jasinski to try and win the $500,000 Big Brother prize.  I poked around the net and found http://www.unitedautismfoundation.org - the UNIAF website at http://uniaf.org was just a storefront it seems and is registered and resolves to a location in Germany - uniaf.org was registered in April of 2007.  Unitedautismfoundation.org was registered on 12/15/2007 to an individual in Ft. Lauderdale, Florida.  The projects, programs, events, get involved, be informed, and official supporter section of the website are not developed.  The About Us page is and includes the following information:

The United Autism Foundation is a corporation, which was only established to serve and improve our community in order to help children and change lives.

Corporation?  Interesting.  The “donate now” section of the unitedautismfoundation.org website is certainly working, how’s that for a surprise?  I’m not saying that the organization isn’t genuine but the shabby nature of the site, the fairly recent registration of the domain, and the timing of the foundation’s launch with the airing of Big Brother leads me to think that Jasinski isn’t doing this for the altruistic factor. 

I know there is a registry of reputable 501(c)3 organizations, I’ve researched them in the past, but I cannot for the life of me remember the link.  If you know it, I’d be interested in seeing if UNIAF is listed.

I am a Big Brother fan, I’ve watched every season of it.  I actually forgot that it started this week as I’m so used to it being a summer show.  Imagine my surprise when I opened up my Google Reader this morning and see Kristina Chew’s post on her Autism Vox blog entitled Kids With Autism Are Not Retards.  Adam Jasinski who is the public relations manager for the United Autism Foundation actually used the incredibly offensive and rather ignorant term “retards” when describing the group of special needs children he works with.  In the video clip posted on the Autism Vox site, Jasinski even goes so far as to say that he works with “them” all day and he can call them what he wants.  I can only imagine that this is certainly NOT the type of publicity that the United Autism Foundation expected to receive when they heard that Jasinski would be appearing on the reality TV show.

Jasinski needs to step up to the plate and offer an apology for this incredulous statement. 

Another post on the topic:

Outrage at Good Job, Mama!

Last month my son attended his first chess club meeting; chess club meets for an hour before school on Friday mornings.  That was his first, and up until today only, chess club meeting.  They went over the names of the chess pieces and the allowed moves.  That weekend my son and I played chess and I was surprised at how quickly he picked it up.  The second week of chess club the instructor was double-booked so there was no meeting.  The third week the instructor was MIA so there was no meeting.  Last night the new instructor, Coach Leo, called to confirm that yes he would be there this morning.  Sure enough, Coach Leo was the first person on the scene.  Alexander is now attending his second chess club meeting.

In these past few weeks we’ve been playing chess,both over our LAN and with the actual board. He gets a little obsessive with the pieces on the board and will kind of zone out as he lines up the pieces he’s captured so LAN play is a bit more productive.  I am obviously worse than I remember and he’s better than I gave him credit for - if I don’t pay attention he’ll beat me.  Our first LAN game ended in a draw.  I barely beat him the next two games and that was with me playing to the best of my ability.  I love how he’s fine when he loses a strategy game like chess.  Last year we were playing the game “Sorry” and as he realized he was losing he leapt over the board game at me like a lion after an antelope and attacked me.  Losing at chess he just says “let’s play again.”  Whew, I’m not in risk of bodily harm.

So this morning while waiting for the custodian to open the library up for chess club, Coach Leo mentioned a chess tournament that is being held tomorrow.  We’d have to register Alexander with the American Scholastic Chess Federation but would receive a magazine as well as be ranked nationally.  In the tournament he would play with other children in 1st - 3rd grade that are also beginners.  The only requirement to play in the tournament is that they know the rules of the game.  Four games are played and it is a zero elimination tournament, all children get to play four games.  Alexander’s eyes widened upon hearing of the tournament and he proclaimed his desire to go.  Seeing him enthusiastic about something is really great so it looks like I will be spending my Saturday in a waiting room with other parents of chess lovers.

Phoebe posted a short but sweet (and oh so important) link on her blog to celebrate Valentine’s Day - Autism is my valentine.  She points readers to a website called Donors Choose where people can search for a teacher in search of supplies for his/her classroom.  It is a sad but very true fact that many schools in the United States are underfunded - this is doubly so for classrooms dedicated to educating children with an autism spectrum disorder.  By going to donorschoose.org and typing in the search phrase autism you are met with pages of teachers looking for supplies for their autism rooms.  Instead of spending $50 on a dozen roses that will wither away and die soon, consider donating some much-needed items to a teacher.

Thank you Phoebe for the great idea!

I just received a Google Alert announcing that the Sundance Channel will be premiering the Autism Speaks/Lauren Thierry film “Autism Everyday” on World Autism Awareness Day.  World Autism Awareness Day is April 2nd and was designated as such by the United Nations after a push by Autism Speaks (the day did have international support).  The film Autism Everyday is truly a horrific film and at one point a parent talks about killing her child because dealing with “autism everyday” is so difficult.  In May of last year, I posted some information on the film in my entry “Autism Everyday Backlash.” 

Seeing this film promoted, in light of a recent case centering on the murder of an autistic child by her mother, sickens me.  The mother in the case, Karen McCarron was ultimately found guilty on all charges.  Perhaps those in the know at the Sundance Channel should really sit down and watch the video and look at the message that it is getting across and compare it to what the family of Katie McCarron has to deal with now that it isn’t “autism everyday.”

No time to expand further right now but I felt compelled to blog immediately.

I don’t know how many times a month I hear someone tell me, not knowing my family’s makeup, that ADHD is not real.  Usually the comment is followed by a statement placing the blame on bad parents who can’t, or don’t want to, control their kids so they simply medicate them into a zombie state.  Our local news station even had a special report with a local counselor who swore up and down that ADHD is simply not a real condition.  As she sat there spewing her nonsensities, my son was jumping up and down incessantly trying to form a thought.  This was around dinner time and obviously his medication had worn off.  He never did get that sentence out.

I do agree with those that state that ADHD is overdiagnosed and overmedicated.  I do think that some children are placed on ADHD medication for the benefit of the teacher(s) and/or the parent(s).  Some children who are medicated are also like little zombies, I have seen it myself.  My son, however, is not one of these.  He is medicated because *he* notices the difference and likes the way he feels and act.  I’ve mentioned it before, he even calls it his “control medicine.” Pretty insightful comment from a five year-old.  Read my entry The Controversy Behind ADHD.

Parentingguides.org has an article up entitled “I Don’t Believe in ADHD” - it is more than worth the two minutes or so it takes to read it.

What an interesting week it has been with regards to autism news.  The week started off with mass reporting of a new study confirming the fact that there is no statistical link between the MMR (Measles, Mumps, Rubella) vaccination and autism.  Yes, another study detailing this lack of a link.  Here are a few different blog entries discussing the study that I found interesting:

New Study Confirms No Link Between MMR and Autism at Autism News Direct

Surprise Surprise:  No link between the MMR and Autism at Autism Vox

MMR Still Doesn’t Cause Autism (and never did) at Left Brain/Right Brain

My daughter has had one dose of the MMR vaccine - she received it after her autism diagnosis.  She also had a nasty local reaction with a huge knot in her leg that didn’t go away for nearly six months.  About a year after she received the innoculation, we found out she was allergic to eggs - ah hah!

Now on to the other study of the week, Vanderbilt University revealed the results of their research study looking at the benefit of melatonin usage to help children with sleep problems who are also on the autism spectrum.  Melatonin is a mainstay in our house and we use it almost nightly.  From the study: 

“Twenty-five percent of parents reported they no longer had sleep concerns after using melatonin, 60 percent of parents reported the sleep problems had improved, 13 percent still had major concerns and only 1 percent (one child) had worse symptoms.”

My son falls into the 60 percent of children who have seen an improvement in sleep.  My daughter falls into the 25 percent of children who no longer have sleep issues.  Sure every now and then she has a sleepless night but between the melatonin and the weighted blanket, I think we’ve found the solution for her sleep problem.  Our pediatrician is one of the more progressive-thinking doctors in the area and suggested melatonin to us over a year ago.  Go Dr. L!