Remembering Katie...

Tomorrow is Katie McCarron's birthday. This loving and cherished girl would have been 5 years old. My own words simply wouldn't be adequate to celebrate Katie's life, so I shall honor her with the words of her loving Father and Grandfather. Each time I write an entry on this blog, I think of Katie. Every time someone asks me why I blog and why I am so passionate about these issues, I think of my own sweet daughter and also of Katie. So many of us have been eternally affected by this adorable little girl, taken from this world far too early.



From Katie's Grandfather, Mike McCarron on AutismVox:

I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that “Katie was not in pain”. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of “karaoke” . She liked to dance, she loved to do the “hooky poky”. She loved being in among flowers and tall grass. She would say “I like grass”. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

She enjoyed having her grandmother dress her in new little outfits and dresses, and I think this is important. We have four grand-daughters, my wife loves to buy them frilly little dresses. When my wife went into a store she would never ask for three normal dresses and one autistic dress. I think we need to be very sensitive to the special needs of these children but at the same time not be oblivious to the numerous typical traits that are also developing. Katie was first and foremost a little girl, she enjoyed people making a big fuss over how pretty she looked. My wife would take her to the beauty shop to have her hair trimmed. Katie enjoyed going to the mall and looking in all of the stores and windows. These are female things.

She went to special schools everyday, the staff at those schools cherished her. I can not say enough for the staff at Mariposa. They were so very much more than professional therapists, they adopted her and loved her deeply. Katie was so lucky to be with them everyday.

There is also another young lady in North Carolina who worked with Katie during non-school hours. The bond that she had with Katie was unbelievably deep. I am amazed that a single Mom working to raise a son by herself could find so much extra love. Maybe love is one of those special resources, the more you give the more is given back.

Katie loved the park, the swings, the slides and being outside. She played with her dolls and toys; she loved “teletubbies” and brought joy to all of those that had actual contact with her. Yes, she was autistic. Developmentally she was behind other children. But her small victories would create unbelievable joy for those who loved her. I can not describe the ecstasy of having her little arms around my neck or of watching her and my son roll around on the floor playing in shear happiness.

Each day I ask the Lord if I could take her place, and perhaps He could return Katie to the loving arms of my son and my wife. So far that prayer has not been granted. But in the meantime I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.

I must apologize for the length of this post, please know that I keep each of you in my prayers.

Katie's father, Paul McCarron made this public statement earlier this year:

"If the measure of a person's life could be quantified by the number of people that loved them, then Katie, in her brief 3½ years, achieved well beyond all of us," Paul McCarron said...

"I ask all parents, and especially those of children with disabilities, to always love your children and be proud of them," Paul McCarron wrote in his statement. "Cherish every moment you have with them. Love, patience and tender efforts are the best therapies."

Kev has also written ever so eloquently here, "Dear Katie."

We remember, with a smile and prayer, beautiful Katie.

Where Is All The Autism Awareness?

This is a new story, yet the theme is nothing short of disgustingly familiar. Another autistic child being kicked out, this time from an airplane. We've seen this play out time and time again, with children being booted from school, church, the movies, and Boy Scouts. Where is all the Autism Awareness?

Here we are, trying to live our lives with our children. And all too often, the treatment we receive from those in society ranges from rude to cruel. The stares, snickers, and whispers are one thing. But lately, it seems the job of parenting an autistic child and that of simply being an autistic person has become increasingly more difficult. The message that we, and our children, are an inconvenience and need not be tolerated is becoming quite clear. There was a time when it was thought community was where you turned to when you needed assistance. The idea of reaching out--whether to your church, your school, or other community groups, seems more difficult for autistics each day.

Now, I will say, I look at things on both sides. In fact, prior to my experiences with my youngest, I may have agreed with the airline's position. I may have believed that kicking this mother and child off the flight was the only option. And to any who feel this way, I say walk a mile in our shoes. I have seen time and time again, the intolerance toward autistic people, and people with disabilities in general, is shameful. I am not surprised that this flight crew was forceful and abrupt, and that they did not attempt to work with this mom and her son. It was only a few weeks ago, that AutismVox wrote about an incident in the security line with her son. What more is needed, for society to become tolerant of our children? The sad truth is, most would prefer we keep our kids away.

With all this "autism awareness" everywhere, I ask you this: where is all the understanding? Does it matter that someone knows what autism is, or the figures 1 in 150, or that Jenny McCarthy "recovered" her son? No, obviously it doesn't. It's gotten us nowhere. Proper care is still very limited, we are still lacking in options for teen and adult autistics, services are frustratingly limited. Autistic children and adults are being abused and killed, as I wrote about recently. Autistic individuals, and their families, are discriminated against. All of the money raised in the name of "autism awareness," all the signs at Toys R Us, the pretzels, the CNN coverage...and where has that gotten any of us?

Another Senseless Tragedy...

People who prefer to find blame in vaccines, often look at us who embrace neurodiversity as being unrealistic. We even are accused of not having our children's best interests in mind. First and foremost, after years of studies continue to find no link between vaccines and autism, why is there still a debate? Why is anyone wasting their breath on this? All the money and media mention--for what?

Those who hold onto the hope of a cure for autism and support pouring millions into such research, also look at us in this same light. Let's be brutally honest here: there will never be a true "cure," not in the traditional sense of the word. What will come in the next several years, most likely, is a prenatal screening for well-documented "autism genes" or other markers for autism. Then, just like we've seen with Down Syndrome, pregnant women will be counseled to abort their fetus based on the positive autism test. A secondary "cure" would most likely be a combination of medications and supplements. There will never be a "magic pill" or procedure to "rid" someone of autism.

So, with all of that in mind, these same people continue to attack those on the ND side of things. We are called every name in the book. There is plenty of confusion as to what Neurodiversity means (as well as what Autism awareness should be), and what so many of us are fighting for. For me, and for most of the parents I know, we are fighting for better services for our children. We want programs created and funded now for teen and adult autistics. We demand better teacher training, employer seminars, first-responders' awareness on autism. We see a dire need for better options for autistics and their families: living arrangements, vocational and education programs, and so on. We also desire our children to be accepted by society, and at the very least tolerated in our communities. We want the world to embrace our child, and see all the gifts we see (for all our children, all over the spectrum).

Our concerns stem not only out of the love we have for our children, but from our fears that arise hearing about stories of abuse. Talk about intervention and treatments (that are respectful to autistics), yes. But how can any of us spend another minute blaming vaccines and promising cures, when our children are being abused, neglected, and killed?

Gabriel Poirier was nine years old when he was suffocated to death at his school. The details of his death are horrifying, and we yet to have all of the facts (like, why the teacher thought this was a viable option?). From The Gazette:

On April 17, Gabriel began to disturb his class with loud sounds. After being told repeatedly to calm down by a teacher, he was rolled in a weighted blanket. With his arms by his side, he was left on his stomach for over 20 minutes with only his toes exposed.

When the teacher went to check on him, he was "listless and blue in the face," the Coroner's report said. The teacher called 911 but the boy was already in a deep coma and passed away the next day in the Sainte-Justine hospital.

"He was a very gentle boy. Sometimes he was loud, but he was never aggressive or violent," Gilles Poirier, the boy's father, said today.

The parents' lawyer, Jean-Pierre Ménard, said vulnerable children like Gabriel need better protection.

"We're asking Minister Courchesne to implement a legal framework to regulate how these children are handled," Ménard said.

To think of how terrified Gabriel must have been as he gasped for breath, and the pain his parents are feeling--we cannot look the other way. My heart goes out to his family and friends. We must all learn from Gabriel's story, and not let his death be in vain. This is yet another wake-up call: our attitudes toward autism and autistics needs to change. What is it going to take to for all of us, autism parents and society, to come together and ensure such a tragedy never happens again?

In the words of Gabriel's father:

"Things, or action should be taken to prevent this, to never happen again."

For more information on how you can get involved, please visit these sites:

End Abuse of Children in Residential Programs: ACT TODAY!

APRAIS - The Alliance to Prevent Restraint, Aversive Interventions, and Seclusion

CAICA - Coalition Against Institutionalized Child Abuse

High Functioning? Then Shut Up!

That's the message sent loud and clear by nearly every autism organization (in the media spotlight: TACA, Autism Speaks, et al.) these days. They don't care what you were like as a child, what your struggles were, or the issues you face now. If you are able to speak to reporters or blog or live independently or hold down a job, they don't need you. Rather, they'd prefer you just shut up and go away.

Oh, but wait...but they do need you. Sometimes, at least.

A lot of the comments from the ABC piece were, as expected, the same regurgitated message we hear lately. The idea that those with Asperger's (or that are "high/er functioning" as they put it) can't possibly be on the same journey as those with classic autism. Don't listen to them. That's not the autism my child has! Those people have no right to speak for the autism community! And yet, it's amazing who they do want to represent the "autism moms" of the world. It's also interesting to see how these people determine what "high functioning" is and what it isn't. It's also curious to learn their criteria, if they have any, for "Autism Recovery."

This group (typically the anti-vaccine and pro-cure folks) presumes that an individual living with Asperger's has not faced any struggles. That they don't have sensory issues, meltdowns, social or communication issues. Basically, in their eyes, they have no business being on the autism spectrum (hello?!). They apparently have never been bullied, don't have problems at school, have no trouble living independently, and all can easily find jobs. Anyone who knows an Aspie or someone who is (as others would classify as being) "higher functioning," can attest, this is not the case. Not to mention, the now-Aspie adults who were previously diagnosed with classic autism as a child. Unless those individuals can be used to further sell their "cures" and you agree to be exploited, labeled "recovered," they don't want to hear from you.

They treat us parents who find joy in our autistic children in the same manner. We are crazy, foolish, and even sometimes seen as harming our children. Really--harming them by not injecting them and not forcing supplements down their throats. Harming them by not subjecting our children to needless and harmful chelation and a myriad of other "treatments." Harming our kids by letting them know we respect and love them? We parents who are not suffering, we are a major inconvenience for these organizations. The parents and autistics who believe in and promote neurodiversity, are even described as being "radical."

Neurodiversity is about real civil (and human) rights. People all along the spectrum are being abused, discriminated against, and are not given equal protection. Many have to fight (and sometimes lose) in order to get the right to an education, to work, and even to participate in our culture--and that is the entire spectrum.

It's interesting to me--those who are seeking a cure (and are disgusted by acceptance or "neurodiversity"), are very quick to use the "1 in 150" stats, and employ them to make a case that there is indeed an "autism epidemic." Yet, they continually discredit adult autistics. When autistics speak, they are the first people to dispute what is being said.

The "1 in 150" includes the entire spectrum. You can't pick and choose how you interpret that number (the one that points to an "epidemic"). You can't use a certain subset of autistics only when they, as a number or statistic, suit your needs.



I had drafted this last week just following the Neurodiversity segment on TV. I read Joy of Autism last night, where this myth along with others are brought to our attention:

4. Biomed autism advocates like Jenny McCarthy's TACA group need and use "higher-functioning" autistic people in their statistics to try to prove there is an "epidemic" on the one hand, while stating on the other that they are not "severe" enough to speak for autistic people.

These myths really need to be addressed by all of us, and especially by groups like TACA, Autism Speaks, and so forth.

Society's Sad State

I was reading Odd One Out in the days immediately following Alex Barton's reprehensible ousting from his first grade class (a la Survivor). I was so deeply affected by the post on this inexcusable act. Primarily on the comments that Lastcrazyhorn had compiled and was writing on. I was outraged and then very saddened by the bias and ignorance I was seeing. Suggestions like this child just needed some discipline, or that his behaviors were due to poor parenting, or commending this teacher for bringing order back into the classroom, honestly make me wonder what country we live in and exactly what year it is.

The case of Alex Barton has done two things. For one, it has brought Autism, inclusion and mainstreaming, and special education into the public eye (at least temporarily). All the major news stations covered the story in some form or fashion. Furthermore, the story has brought bloggers together all across the world. I've seen bloggers who have no connection to autism writing on it; others whom I have many disagreements with are just as passionate about this child's rights. It's been amazing to see us, once again, all come together to make change. We do have to remember that this is far from over--both for Alex and for the rest of our children. So, we need to keep writing those in the government and making our voices heard.

The other thing this case in particular has done is clearly brought forward how a great many in society truly feel about autistic individuals: put them away. The vast majority of us parents speak about how relieved we are to be living in a day where we do raise our children. Gone are the days that we are forced to (or strongly advised by our physicians and others we trusted) institutionalize our children (well, in most cases: please read about Nate Tseglin). However, it seems that a number of people would prefer we do just that. They don't want our kids interfering with their child's education. They speak of our kids as if they have some rancid, contagious disease. One that if our kids area allowed in their child's classroom, will seep through and infect the whole school. They claim it's unfair for their child to be in a room with our child. Unfair? Why? Because our child may help your child learn about tolerance and acceptance? Because they may learn to not judge a book by its cover, once they get to know our child? I'm sorry those lessons are so appalling to these parents.

I hate to break it to you who think my child will so horribly disrupt your child's education that she should be dumped somewhere else: my kid isn't the only one having issues in class. Have any of you spent time in a public school classroom? In Vanillaville, USA, you are going to see a SPECTRUM of children in any given room. You will have kids of varying intelligence and skill sets, children who have learning disabilities, health issues, and those that are gifted. You are going to have kids who are poor, kids who are rich, and all those in between. There are going to be adopted kids, foster kids, kids whose parents are divorced, and so on. You may want to point the finger at my child and say she is the one affecting your child's education--but really, can you prove that none of those other children do?

My oldest child is in fact labeled "gifted and talented" based on an evaluation (IQ score, plus various tests of knowledge and ability). She is in a classroom with children of varying abilities, and all those differences I mention above. Do I sit and whine that any of those kids is disrupting my kid's education? No. She is in public school, that's all part of it. She does have a few children in her classroom that receive special ed services. I've witnessed a meltdown by one of her peers, another child who is literally unable to sit still, and another who has significant trouble with reading. Shall I begin a protest to take these students out of my child's class? I would never. School should be a place where children learn to be good citizens. That is still a part of today's lesson plans, right? I want my daughter to acknowledge and accept children who are different from her. I don't want my daughter to judge a peer based on their skin color, family situation, physical appearance, or so-called "behaviors" ala Autism.

If you feel that my autistic child, or any other autistic, disabled, or different kid is so horribly affecting your child's education, guess what? You have a choice. Go to private school. I'm sure there are some better-suited schools out there--you know, ones where only blue-eyed, blonde-haired, strong, "neurotypical" children are accepted (I wonder if there are any schools who support a program like T4, that may be more your liking). People will say I'm crossing a line, that these views of society in 2008 are nothing like Hitler. I beg to differ. I think many would agree that if and when a prenatal genetic screening for autism is available, abortion will become common place, as in the case of Down Syndrome. We have professors speaking--and smiling--at universities, about eugenics.

This is the state of our society today. In this country, it is touted that we are the land of the free, and that each citizen has the same civil and human rights. This is not the case when it comes to disabled persons. What have we learned from history? Why are so many unwilling to give our children and autistic adults a shot? Why is there such intolerance and ignorance? It is my hope that through Alex Barton's horrible experience (and, sadly, many others) that a dialogue can begin. I want real change, for my child, for the many other individuals I've come to know on this journey. I can only hope that society is ready to listen.

Response to Comments: Alex Barton & Inclusion

I received this comment by Eric (you can watch the interview here):

"This child needs special attention for his disability- he should not be in a class room with children of a normal performing level. After reviewing the interview from "The Early Show" http://www.breitbart.tv/html/103693.html the child looks extremely disruptive and probably is a distraction in class. Placing those with disruptive disabilities in normal classrooms detracts from everyone else's education and occupies too much of the teachers time. The classroom is better off without him."

Yes, he does need special attention. His mother was meeting with school officials, this teacher included, to make such provisions. From what I understand, he had an IEP in place, and most likely a BIP (and if not, the school was indeed failing him well before Wendy Portillo's disgraceful actions). He should be in a class with "children of a normal performing level" (whatever that is in kindergarten!). For one, it is the law. Alex, just like my child, just like your child, has rights. You're not saying that autistic people don't deserve the same rights as other citizens, are you? Please read about Least Restrictive Environment, and perhaps you'll better understand why Alex deserves to be in this class. A side note, when you say "normal performing level," I wonder what that means. Are you talking about behavior, academics, or IQ? Odds are, Alex has a rather high IQ and is very capable of keeping up with (or soaring past even) his peers in academics (when the right supports are in place). What would be your definition of "normal performing level," do you have a specific criteria a child must meet before being allowed in a classroom?

I watched the interview. Can you tell me exactly which behaviors were so deplorable that Alex should not be in his classroom? You state he "looks extremely disruptive." Really? I can't imagine how my eldest (the gifted one, remember) would act in front of a camera. Actually, I bet she'd act out in ways I'd be mortified about! I don't even think I could get my youngest to sit on my lap or be anywhere near the camera crew and those spotlights (to which I greatly applaud Alex!). You can't base how a child acts, in front of bright lights with odd sounds and such. I personally did not see any behaviors indicative of Alex being a nuisance in class. Perhaps it's because I spend 24 hours a day with two very quirky kids, but I saw an inquisitive child. He didn't seem much different than any other child I've seen on T.V. while his parent is being interviewed.

With regard to the behaviors of this child in school, no one denies that Alex wasn't having difficulties. That is part of autism, at least for every autistic child I know. There are steps in place for schools to help a child with this. IEP's and BIP's help, as does open communication with teachers, counselors, and therapists. It sounds like not all was being done to help Alex, that could be done. I sincerely hope that now that he has an official diagnosis, steps will be taken to help him out. He may benefit from having a para or other support services.

How would you define "disruptive disabilities?" Is it just the autistic children? A child with ADHD? Does this include a child in a wheelchair? A child who stutters? The child with emotional issues due to their home life? I have actually seen so-called "neurotypical" children in the classroom be more "disruptive" (although I feel that word is rather harsh) than an autistic child. A child with ADHD may have a hard time focusing or sitting still. Yet, I don't think anyone would suggest placing a child with ADHD into a special education class. A child in a wheelchair may require more time going to and from the classroom, and certain class activities may need to be adjusted to accommodate his/her needs. The child who stutters will take longer to read a sentence aloud. A child with emotional issues may get into fights, may have trouble concentrating, may cry or act out. Would you argue as strongly for those children to be in a separate classroom as you do for Alex (and apparently all autistic children)? In any given classroom, there's plenty of distraction. It's not just Alex or my kid who may require more of the teacher's time on any given day.

The last sentence is the one that really felt like a punch in the gut. The idea that Alex's classroom or any other autistic kid's class is "better off without him" is so disturbing. It is the same barbaric mindset that once institutionalized our children, giving them no hope of any type of life, our kids were seen as having no value. This same senseless thinking leads to these very crimes, and disgusting preaching like this. This is why we fight, this is why we are so passionate, this is why we rally. Until society sees our children as human beings, as individuals with the same rights as anyone else, and accepts them for who they are, we will not be silent.

Another reply I received:

"anon So, lets see here, this little kid in Florida was being a t*rd and the rest of the kids voted him out of the class? whats the big deal? He's probably the same kid who gets picked last or doesnt get picked at all for any team sports. It's amusing to see the mothers cry out in harmonic outrage for their little precious bundles of stupid reject. Your kids are t*rds. Deal with it"

This comment deserves no response, and therefore I won't give it any justification. I do want to have it up here, just so that those people who may be unaware of what we, what our children, what autistic individuals, and what disabled citizens face day in and day out. These hateful, ignorant viewpoints are everywhere. Prejudice is very real in our world.

"I'm Not Special"

Those are the words that Alex Barton has come to say repeatedly to himself. He screams in the car when his mother drops his sister off at school. He's refusing to eat and unable to sleep in his own room. Alex was recently kicked out of his school, by his classmates--after his teacher took a vote on it. Alex is thought to have Autism (currently being evaluated for Asperger's). He is also just five years old, in kindergarten at Morningside Elementary in Port St. Lucie, Florida.

Remember Kindergarten? That time of our lives when we are supposed to be taught to be good citizens, to learn social skills, to learn how to "get along," and how to obey the school rules. We're also supposed to have fun, play, and make new friends. Kindergarten is supposed to be the foundation upon which our next 12+ years of education will rest upon.

And yet, in Alex's classroom, the lessons being taught by Wendy Portillo appear to be ones of prejudice, intolerance, and outright cruelty. Alex's peers learned from their teacher that if someone is different, and you have a hard time understanding their habits, actions, delays, etc., then you simply dismiss them. Get rid of them. Kick them out. Take a vote, and out the classroom they go.

And, before you do, you might as well tell that person what you think of them. Five year old obscenities like "disgusting" and "annoying." This is brutality, no doubt. Melissa Barton (Alex's mother) reports that Wendy Portillo confirmed that this indeed happened. If that is the case, this teacher is cruel and inhuman, a person who has no business being in the education sector. She is teaching innocent, naive five year olds a lesson of hatred. A lesson that these children will not soon forget. We can only hope that these kindergarteners' parents have enough sense (and compassion) to explain to their children how wrong this is. It's far better to teach their children tolerance, acceptance, and understanding, and it's my wish they realize that.

If these reports have been confirmed, I see no reason why this teacher still has a job. She should have immediately been fired, no questions asked. One can't help but wonder--if this child wasn't autistic, what steps would the district would have taken? Had this been any other child in that classroom, all hell would have broke lose. There would have been protests, and no doubt, due to massive political pressure, this teacher would have received her walking papers STAT.

We've all seen how autism continues to be portrayed on television--as children who are violent, angry, withdrawn, and out of control, who were "kidnapped" or "lost their soul." The parents desperate and depressed, their lives "spiraling out of control." So, when the public hears that this child has autism, and was having "behavioral issues," most say "well, I can understand why you wouldn't want a kid like that in the classroom." They presume to know Alex all because of what they've seen or heard, these biased reports in the media. Society doesn't want to understand (let alone accept) autism or autistics--at any age. They're being constantly fed these ideas about recovery or a cure, not ever about the dignity or acceptance of autistic individuals. The message that those lives are not worthy of our respect or our time is what the public hears.

So again, when an autistic child is kicked out of class, they don't much care how or why it was done. They think nothing of the ramifications, not only on the autistic child, but also of the other children in that classroom. We are living in a culture of un-acceptance. We all must fit into the public's cookie-cutter mold, or we are just not good enough to be an equal member. Our society likes to preach a lot about being diverse, and about supporting those with disabilities. Yet, when it comes down to it, in the real day to day stuff, society would rather look the other way.

When people ask me why I cringe at a celebrity bragging about her "recovered" child or a politician working to "prevent and cure anything along the Autism Spectrum" or a grandmother declaring that "Autism knocked on the wrong door," I don't need to look far for my reasons. The case of Alex Barton clearly shows us that this propaganda reaches far and wide, not only into our homes, but even into our schools and churches. I want the Barton family to know that they have my full support, along with many others. I was grateful to read this, and learn that Alex's mother, Melissa Barton is a very strong woman, who will not let this slide:

“He has many of the symptoms of Aspergers” says his mother. “The teacher knew that he was under evaluation even having a part-time assistant just for Alex, and she decided that the best way to handle him would be through humiliation from his peers. I cannot imagine how he must have felt as his teacher encouraged the other students to bully Alex by telling him he is disgusting and they do not like him among other things. This is abuse and discrimination among other things; I will not soon let this go” says Melissa Barton. “The moment he needed me the most, I was at work. I do not know if he will ever trust teachers again, I do not know if I will ever trust the Port St Lucie School District again. I know it will be a while before I can convince my little boy that learning is fun. I am deeply sorrowed by the pain my child suffered at the hands of his Port St Lucie school teacher.”

Mrs.. Barton went on to say, “This is a sad day for parents of disabled children across the USA. I am now seeking the help of a physiatrist for my son as he refuses to eat, sleep in his own room and other problems that arrived directly after the abuse."

Make your voice heard, tell the Port St. Lucie school district that this type of discrimination and hatred will not be tolerated.

CONTACT INFO:

Morningside Elementary School Principal:
Mrs. Marcia Cully
cullym@stlucie.k12.fl.us
(772) 337-6730

St. Lucie County Schools Superintendent:
Michael J. Lannon
4204 Okeechobee Road
Ft. Pierce, FL 34947-5414
Phone: 772/429-3925
FAX: 772/429-3916
lannonm@stlucie.k12.fl.us

St. Lucie County School Board Chair:
Carol Hilson
772-519-0397
hilsonc@stlucie.k12.fl.us

Vice Chair:
Judith Miller
772-528-4545
millerj@stlucie.k12.fl.us


The Autistic Self Advocacy Network is asking all those who write to express their outrage to cc: info@autisticadvocacy.org so that ASAN can keep track of the strength and sources of the response. They also advise us to be mindful that abusive messages hurt our cause--please be respectful in your comments.

A special thanks to Bev at Asperger Square 8 for bringing this to my attention.
Others who have blogged on this:
ballastexistenz
Whose Planet Is It Anyway?
Whitterer on Autism
Maternal Instincts
The Joy of Autism
LeftBrain/RightBrain
Action For Autism
Along the Spectrum

Thank you, Mike McCarron

I wasn't going to write about this. But, the more I have thought about it, I really wanted to share. Every once in a while, I second guess myself. This is in all areas of my life, my relationships, my children. This is not exclusive to autism, or the paths we've chosen regarding autism. At any rate, I found myself wondering if I was doing any good. I contemplated quitting blogging and just moving on.

I'm a free spirit at heart, and truly hate to see parents on different "sides" of the autism debate fighting. So much time, energy, and emotion is wasted, and our focus is lost. Isn't this about our wonderful, amazing children? Can't we find some common ground? I so often just want to scream "can't we all just get along??" I do not hate anyone, I may have distaste for others' views, yes. However, I do not hate them just for their opinions, despite how misled and inaccurate I may feel those are. I do not wish these other parents any harm or misery. I also don't necessarily feel that one is a bad parent or terrible person for venting about their life or about autism (when it is done in a respectful and non-degrading, mature way).

I don't instantly think someone is horrible if they are trying biomedical "treatments" for their child. It does make me sad, I have concern for both the child and their family. It's heartbreaking to me hearing many of these parents speak toward autism, and worst, their own child. I always look to see the other side, their perspective. I haven't walked a mile in their shoes, perhaps I have no clue. So, I am sympathetic (to a point), and often try to keep my mind and heart open. I believe I am not in the position to truly judge anyone. At the core of it all, I seem many similarities between myself and say, Jenny McCarthy. We are, after all, simply two moms with autistic children, doing what we feel is right for our kids.

With all that said, I also have my eyes wide open, and see very clearly what is going on around me. I see how autistic adults are mistreated, disrespected, discriminated, and misrepresented in society. I see the abuses that autistic children and teens have endured. Sadly, I know of far too many autistic people, of all ages, who have been murdered. This is reality. This is what is happening now, today. This is why I write. This is why I will continue to fight.

Dozens of purported autism charities and groups collect millions upon millions of dollars. Year after year, where does this money go? Have we seen a sharp increase in the last few years of services for autistic adults? Are families with young children being helped or supported any more than they were five years ago? Are schools that much better equipped to handle the needs of students along the autism spectrum? Is the public truly more "aware," prepared, or better accepting of autistics? Where I live, and from others I speak to all over the U.S., the answer is a sad and resounding NO.

Until I can say that yes, true change is happening and I am hopeful for my child's future and the future of all autistics, I will keep advocating. I am hopeful for my child's own future, it is her future in society that I am concerned about. I worry about her education, her vocational prospects, living arrangements, and overall quality of life as she reaches into adulthood. What kind of world will be there for her? It's certainly not the world that is out there right now. I'll be damned if I don't make real, positive change, so that she is able to continue flourishing and making the most of her strengths in her teen and adult years. My legacy for her will be that she is accepted, and truly appreciated, by the public. I will work tirelessly for this.

Speaking of tirelessly...sometimes this (fighting for change) feels like a heavy burden. I hit one of those points late last week. I wondered if I really was changing things for my child. Was there much point to all I was doing? I stumbled onto some very negative writings, and honestly felt hopeless about so much. How can I really convince people, so full of contempt and vile, that they're wasting all their energy and time on the wrong things? Fight for our children, not against them. Rally for their rights, battle for acceptance so that our children will have a real place in society. I was contemplating a lot. One of which was to just quit typing, and let it all go. Sometimes, the arguments that go on between us parents all are so very tiring to me.

I took the long way to get to my point, but here it finally comes. Each time I reach a moment like this, I am reminded in some way of why I write, and why my voice is important. I want to thank Katie McCarron's grandfather, Mike. He wrote an open letter to the Autism Hub, of which I am proudly and graciously a member of. His letter came at just the time I needed to hear those words. I, like all the other hub members, were moved beyond words by his message. He has inspired me, and really put any doubts I may have had to rest. I have printed out Mr. McCarron's letter, and it hangs by my desk. It will be there, everyday, along with my daughter's picture, reminding me not only why I do it, but why it is vital I continue.

Thank you, again, Mr. McCarron, for your inspiring and encouraging words.