Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

5/24/08

"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

5/21/08

If you read nothing else today...

It should be this! Kev (LeftBrain/RightBrain) continues to do an outstanding job reporting on the Autism Omnibus hearings. Specifically today on Elizabeth Mumper's (medical director for DAN/ARI and founder of the Rimland Centre) testimony.

Some highlights: If you are testifying & referencing a study for a statistic (to support your beliefs), make sure those statistics are actually in the study! How accurate is the Porphyrin test (especially with regard to results in both autistic and non-autistic children), and does it detect mercury in the brain? Do not miss this!

Something interesting I came across was this: Dr. Mumper states she has never treated a child for mercury poisoning. Which, is somewhat startling to me, seeing as she is a DAN! doctor. I came across a few things that made her statement all the more puzzling. Here, from a vaccinetruth.org:

Chelation Use in Autism Spectrum Disorders

The role of heavy metals such as mercury in autism has been heavily debated, and many parents are turning to chelation as a potential treatment. Dr. Elizabeth Mumper presented her findings from treating children at the Advocates for Children Pediatric Clinic in Virginia.

She reports that she has treated 280 children with autism who showed altered metabolism of porphyrins in blood and urine. She uses this disruption in porphyrin levels as an indirect marker for heavy metal exposure, and in addition noted that these patients show a disruption in the methionine synthase pathway, also measured in urine and blood. In addition to chelation therapy, children receive vitamin supplementation to compensate for possible loss of essential metals lost during succimer treatment.

Although no statistical analyses were conducted on the effectiveness of chelation therapy in children with autism, Dr. Mumper has cited positive responses from parents who report an improvement of symptoms following oral succimer chelation therapy as part of the DAN! protocol.
And then here, on the DAN/ARI website, scroll down to the box at the bottom and read the "Treatment Options for Mercury/Metal Toxicity in Autism and Related Developmental Disabilities: Consensus Position Paper." You will see that Dr. Mumper was one of the signed physicians on this paper.

So, let's see--it would appear she believes in Mercury/Metal Toxicity, has trea
ted 280 children who she claims had markers for "heavy metal exposure," and that these children's parents have "cited positive responses" from her treatment. I'm curious if all of those parents realize that Dr. Mumper was treating their child for a "diagnosis" (heavy metal exposure) based on a test that she now states does not provide any evidence that mercury is in the brain.

I also wonder if all of those 280 sets of parents (or the many more that have been "treated" since) believed their children were not being treated for mercury poisoning. This idea, of mercury poisoning, is plastered throughout the DAN/ARI and Generation Rescue websites. In fact, many of the parents and activists affiliated with DAN, Generation Rescue, et al refer to autism as "mercury poisoning."

5/19/08

Jenny's New Book

I was checking out Amazon.com when I stumbled upon Jenny's new book. It is entitled, "Mother Warriors: A Nation of Parents Healing Autism Against All Odds," and is available for pre-order, with a release date of September 23, 2008. Mother Warriors? Really? That title is hefty, it's sure to raise more than a few eyebrows. I assume Ms. McCarthy got the "Mother Warriors" from Oprah. On her show, she said to Jenny and Holly Robinson Peete (and perhaps to all us "autism moms" or maybe just the ones who are fighting autism?), "You're mother warriors is what you are." I've heard Jenny use the "W" word before, but I'm not sure if it was before or after her appearance on Oprah.

I have no doubt this will be another bestseller. Good for Jenny and TACA. Bad for us. I've written on my concerns of such a book previously. I'm curious to see what the criteria for being "healed" from autism is? Is there a set of tests or surveys? Are the families profiled subjected to testing, if so with what and by who?

Bigger than my doubts on what "recovery" from autism is, is the issue I have with this mentality. The idea that "recovery" is within every autistic child's reach, and that we as parents (or more often, as mothers) are staring down some doom and gloom timeline to "fix" our kids. We have seen parents who feel they have done all they were "supposed" to do, they had tried everything, and still had not gotten "rid" of their child's autism. Children have been murdered by their parents (and other carers) or died during chelation and some of these other so-called treatments. This idea that your child needs to be cured, that it's like they've been "hit by a bus," and that we should try various treatments (keeping in mind that like chemotherapy, these treatments won't help every child) until they are "recovered," can be very dangerous. Nobody, especially the media, wants to tell this side of the the cure autism movement.

Celebrating only the autistic children who are able to supposedly be "healed" or "recovered" only devalues the life of autistic individuals. It distracts society from the dire need for adult services, and blurs the reality that autistic children do really grow up to be autistic adults (yes, Jenny, once again--there ARE autistic adults). It also further burdens parents who do not see the same progress in their child--especially if they bought into the propaganda and tried all those supposed treatments. This growing mindset, and a book such as this, can be very dangerous.

5/14/08

Ramblings this week...

The other day, I was flipping through the channels. I missed most of the interview (which, I can't say I was upset about!) with Deirdre Imus on Fox News. The banner on the bottom of the screen read, "Parents trace link between mercury in vaccines & autism." What they fail to mention in that headline, is that this link has no scientific basis. Once again, Mrs. Imus, just like Jenny and others, denies the possibility of a genetic link to autism. This perspective is somehow held onto by these people, despite real, hard evidence of various genes related to autism. Twin studies are very interesting to review. Here's what Deirdre had to say:

"...no such thing as a genetic epidemic & autism is an epidemic."

It was a brief piece, at least what I caught of it. What's unfortunate, is that Deirdre's irrational points, along with that ridiculous headline about a "link" between vaccines and autism, all got the last word. I was surprised the phone wasn't ringing, family and friends asking "did you see Don Imus' wife on T.V.?" Questions about the Omnibus cases, and also, I imagine, why the heck Mrs. Imus was involved with this debate. No one did call, so I assume they all, like I almost did, missed this brief snippet. One thing is for sure, the anti-vax message is spreading. For a while, it was found only on MSNBC, and then CNN, and now Fox. It's clear to see who has all the money--and what they are doing with it. Why ever would this elite bunch, with their cash cow organizations, want to actually help autistic people with the money they raise?

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Something I found strangely ironic, was a while after this autism-vaccine piece, the show featured a comedy troupe in the U.K. (doing a Facebook sketch). This troupe is called "Idiots of Ants," which when pronounced aloud is, "Idiot Savants." I imagine that no one at Fox News understands the irony. Well, based on statistics, perhaps at least one person on the production crew, in the back office, or in the studio got it, if their child is also autistic. The term "idiot savant" is no longer used, but was once how autistic savants (and in general, most savants) were referred to. Webster's defines "idiot savant" as
"a person affected with a mental disability (as autism or mental retardation) who exhibits exceptional skill or brilliance in some limited field (as mathematics or music) —called also savant"
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This thought came to me tonight, amidst all this autism-vaccine hubbub. What do the anti-vaxers have to say about Childhood Disintegrative Disorder? It was first documented in 1908. The fact that the symptoms and onset of CDD is very similar to regressive autism (age being the main differential), would make one wonder if they both have the same cause. Recently, there has been some written on autoimmune and environmental factors in CDD. However, since it has been affecting children since at least 1908 (and surely prior to a doctor identifying and naming it), one has to wonder if a vaccine link to CDD is truly feasible. Surely the children with CDD in the early 20th century were not vaccinated. Curious...to me at least.

The Question That Led To Many Questions...

"What is wrong with her?"

This is what a classmate of my eldest child asked, regarding B. It caught me by surprise. For one, over the year, A's class has seen her little sister. They've also heard my daughter speak about her. So, I assumed all the kids understood: she's different. I guess not. Perhaps hearing stories or explanations, and seeing a child in the special ed group is one thing. Actually spending time with and being near to that child is another.

B has great difficulty in new settings. She has a very hard time with new people, especially children. On the day this question was posed, my little one was having to tackle both. We were in a semi-strange classroom (her sister's room, which B has been to only briefly twice before) and, of course, it was full of children. The visit began with anxiety and tears, B not wanting to go in the room. However, I had to be there in the room to help out. I reassured her, and we made it into the room without anymore difficulty.

Her sister swiftly found crayons and paper for coloring (did I mention A is the greatest big sis ever?!). We sat at the teacher's desk, and she colored. The children were busy with a quiet activity themselves. The boy sitting closest to us attempted to converse with B. "Does she talk?" he asked, after getting no response from her. "Yes," I said. Indeed, she is verbal (very silent in situations such as these though). The boy continued to say "hi" and tried to get a response from her. She burrowed herself into my chest (something that becomes harder and harder as she grows and gets bigger). I told B she could wave if she didn't want to say hello, she did neither. The boy eventually got bored and went back to his work.

A while later, she was done with coloring. We walked over to the book corner. B was very hesitant, not wanting to be exposed out there, in front of the class, in front of those children. She clung to me, and we carefully made it to where the books were kept. As we were picking out a book, that's when I heard "what's wrong with her?" The little girl asked, half concerned, half aggravated. I can't pinpoint what made her ask this question. So many of B's mannerisms are now normal to me; I have a hard time deciphering what is deemed abnormal by others. Was it because she wasn't speaking? Because she stared down at the ground, never looking at the class? Was it her whimpering? Perhaps she was stimming, or was it something else?

I guess I was caught off-guard because at the time, as far as I could tell, she wasn't doing anything overly exaggerated. She wasn't having a meltdown, she wasn't rocking, flapping, or walking in circles, she wasn't shrieking or doing anything else that would make her appear obviously different. And yet, an elementary student picked up on the fact that something was different about my little girl.

I was perplexed and bothered by the question. I had assumed that these kids understood her. Sounds silly to me now, to expect that from children. I also thought that in her quiet moments, B blended (not that it's some goal of ours, just an assumption of mine). I'd even heard from people here and there when she was younger, that at first glance, they'd "never even know anything was wrong with her." I didn't have an explanation for the inquisitive girl. I told her that B was okay, and for her to get back to her classwork.

"What's wrong with her?" It echoed in my mind and really bothered me. I felt sad for my daughter. I've felt this before. The times people have asked "why does she do that?" or "what is she doing?" And when other children have given her odd looks. I've even heard kids ask A about her sister, "why doesn't she speak?" A common response is "she's very shy" or "she's really excited." It's easier to say that, to people who you'll never see again and when you've only a moment to speak. If I do have more time, I have explained autism, sensory issues, feeding tubes, etc. I certainly didn't know how to give a child an answer to this particular question.

And, in this moment, I realized this was only the beginning. In the last year or so, the differences between B and her peers have become more obvious. The questions, the looks, the curiosity of others increases. Aside from the social, sensory, and other issues, her motor skills are pretty delayed. So, even when simply playing at the park, my child struggles. Well, I see her struggle. To B, it's just her body--it's how it's always worked, she knows nothing else. So, I don't know if I can say "she struggles." She has to work a lot harder, falls a lot more, and isn't able to do some things that kids her age can do. But again, it's not like she sits there thinking "if only I could..." as she never has. I don't know what level of self-awareness B has (if it's any less than other kids her age or not), but she isn't very interested in most other children (especially those she doesn't know--like the ones at the playground, she has a very hard time interacting and even observing them). So at this point, I don't think she worries about what her peers are capable of doing versus what she can do.

I suppose the other reason why this simple, even innocent, question affected me more than I would have expected, was because I didn't want my daughter to hear it. As with her gross motor delays, I'm not sure how these comments affect her. A part of me hopes she doesn't care about that sort of thing, that what other people think just doesn't matter to her. But what if she does? I certainly wouldn't like it if I heard "what's wrong with her?" or "why is she like that?" and so on, wherever I went. It would surely, at the very least, damper my self-esteem. I hope my child doesn't understand what's implied in these questions. Hopefully, she is busy thinking of better things and focused elsewhere when these comments are made. In time, I imagine I will learn if and what B hears, if she cares, and how it may be affecting her.

Until then, a girl's simple question leaves me with more questions of my own.

5/5/08

Mother's Day

A mother understands what a child does not say. ~ Jewish Proverb

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(Breakfast In Bed ~ Mary Cassatt)

This is from Elaine Hall (aka "Coach E") of The Miracle Project (Autism: The Musical):

My mom used to say that Mother's Day was just another day. She still needed to make the bed, straighten up the house, wash the dishes (especially after we'd made her that fabulous breakfast in bed and turned the kitchen into a splattered mess!) Though my mom didn't always show it, I know those cards we decorated and the little gifts we made in school warmed her heart.

For us "Special Moms" it can be a little different. Our kids can't always express how they feel towards us in traditional ways. They may not be able to verbalize how they feel, or they may not be able to draw or write their name on a card. But know, when you dig down inside of your own soul, you can hear their voices.You can sense their appreciation. You can know that you are their lifeline; their advocate; their way in to the world.
She continues on with a poem and some words of wisdom for other moms. You can read the rest of her Mother's Day message here. I love what she says, about how your child may not be able to verbalize their feelings, make a card, or the other "traditional" ways kids typically say "Happy Mother's Day."

As I've written before, it is a learning process, to "alter your preconceived notions" of what love looks like, how it is expressed. Do not focus on what your child isn't doing (saying "I love you" or hugging you or blowing kisses), but rather what he or she is doing. And, mostly, how in their own unique and special way, they are showing you that love. Those declarations of love and gratitude are often found in the little, simplest of moments. You have to look closely, and again get past all the ways you once thought love was expressed.

I've also written my feelings, on how honored I feel to be my daughter's mother and also of the very real concerns I have for the future. There are far too many "autism moms" in the media who say awful things about the life they have with their child, desperation and fear are the overriding themes. They claim to speak for all of us, all of us moms who are raising autistic children. The public perception is that we are all miserable, we have no hope, and we are fixated on curing our children. The focus remains on how to "cure" their child, not on acceptance or on preparing for their adulthood.

For new "autism moms," the task of figuring out what the diagnosis itself means, what steps they should take, and how to handle "life with autism," is nothing less than confusing. There are a million perspectives out there. As it's stated above, take a breath. Educate yourself, but be sure you know where you are getting your information from. There are also many people who have hopped on the autism boat to make a buck. I have found the greatest support and advice comes from parents who have older autistic children. They have more experience and perspective, they've 'been there, done that.' And--survived to tell about it! My best piece of advice I might give to a mother whose child has recently been diagnosed with autism: always be aware of what you choose to focus on at the end of the day. That can make all the difference, not only for you, but especially for your child.

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"My mother had a great deal of trouble with me, but I think she enjoyed it."
~ Mark Twain

5/3/08

Kids' Autism Awareness

I recently purchased this book, The Autism Acceptance Book which I think is a really great book (workbook as well). It's really wonderful for siblings, the first book that lets them "step" into their sibling's experience. For example, the book discusses that some people with autism may have a hard time talking. For each section like that, they have a "Walk in their shoes and see how it feels" part. For the talking section, they recommend this:

"Pretend you are in class and you can't talk. You have to go to the bathroom, but the rule is that you can't go unless you ask the teacher. How would you ask the teacher without using words?"
and then further down after listing examples like gestures and drawing to express this,
"If the teacher did not understand you or got impatient with you, that would be pretty frustrating, wouldn't it? Can you imagine how frustrating it would be to know what you want, but not able to say it?"
This was something that really helped my oldest. The book is very positive, and these "walk in their shoes" parts further a kid's understanding. I will add, as I've done before, that we always start our conversations on autism with our oldest as "well, you know any little brother or sister is a pain in the butt to their older sis or bro" and we recommend she just ask her (my husband and I both have older siblings) aunts and uncles about that. I think parents must be careful of "dismissing" every issue as part of autism. Granted, there are things that are, because my child is autistic or has other special needs. We openly address those. But, to harp on about how all the issues siblings may face are autism's "fault," is not proper.

The book is geared toward "being a friend" to autistic kids. At the end, this is written:
"Now it's your job to spread the word! Tell your friends and family how important it is to try to understand, accept, and include everyone."
My daughter has done more for "Autism Awareness" than most people I know. It's her simple kid-approach that is endearing to watch. It's the "yeah, my sister's autistic and has a mic-key on her stomach--so?" viewpoint of hers that is just awesome. She tells her friends "yeah, she gets really shy" explaining why her sister won't even look at, let alone speak to, any of her friends (as they all call out & wave to her). She tells them "she has a hard time eating and drinking, so her mic-key helps her do that." I have no doubt that as she goes through school and enters into adulthood, my eldest will have educated and opened more than a few minds. She is quite the advocate in her own right, and I could not be more proud of her.

April Is Over...

ImagineApril is officially over. And all I can think of is John Lennon's "Happy Xmas (War is Over)" song...

So this is May First
And what have you done
Another month over
And a new one just begun
And so this is May First
I hope you raised funds
The near and the dear one
The old and the young


So what have you done?

$1,402,639 was raised thus far (assuming this is final amount, as campaign was said to end yesterday, May 2) from the Toys R Us/Autism Speaks campaign. It does not clarify if that is the online donations, or a combination of in-store and online funds raised. So what will Autism Speaks do with this money? And what will they do with the millions and millions they continue to raise? I urge Autism Speaks to help, the young and the old. Create programs and services, or create separate, smaller agencies to handle the needs of older children and adult autistics. That is what's truly needed.

I was glad the other day, as I checked out of the store, that this was the last time I'd see these. At least for now. At least until next April...

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I didn't feel obligated to do anything for "Autism Awareness" month. Sure, I blogged on it, I watched CNN on that day, I read some articles and studies, I watched some documentaries, I spoke to family and friends, I was inspired, and, of course, lived each day, quite "aware" of autism. We make people "aware" of autism (& also of things like seizures and feeding tubes) whenever the situation presents itself. Perhaps at the playground, a friend's house, or elsewhere. I don't feel it necessary to educate every person I come in contact with. Mostly because, I am raising two young children--a handful enough out in public. I simply don't have time to give even a mini Autism lesson to the strangers who may stare or whisper. And, to be honest, that reaction typically only comes following two things: a meltdown or if they see my child's feeding tube. Both times, I'm fully engaged in my child and don't have a moment to be concerned with others.

People generally smile, even if they appear perplexed, if they catch my child "stimming." I don't think they see a child jumping or walking in a circle or even flapping and think "autism." They most likely see an excited child, perhaps a hyper one, and usually a happy one. For some, if they know what "stimming" is, they may see that, but then they'd also understand it. So, did I do my part for the month of April? I'd say yes. But then again, I do that same "part" every month of the year. And the biggest bit on "awareness" you'll hear from me in person is the need for adult supports, respect for autistics, and the disgusting reality of eugenics.

One of the COOLEST things I came across during "Autism Awareness" month was here, please check it out.

5/1/08

On Disablism

Blogging Against Disablism Day
Disablism is something is something new to me. Actually saying that now sounds ridiculous. It is true, I've come to realize, that until disability touches your life, most remain completely unaware of it (and yet many are guilty of it). As a parent of a disabled child, I'm slowly learning and seeing it in the world. I see it at times when other parents look at my child, I see it when some "professionals" give their opinion of her, and I even see it (although they have no clue of it) in the eyes of other kids on the playground. I am very aware that, unfortunately, this is only the beginning of my experiences with disablism. I hear from other parents who deal with it in their lives, with their older disabled children. I hear about it from disabled adults who face it on a daily basis. For those who feel disablism doesn't exist, you are sorely mistaken.



"DON'T STARE!!!"

That is what so many parents teach their children. Children are naturally curious about anyone who is different from them. Even a small infant may seem especially interested in seeing someone with glasses or with a different hair color, anything that is unlike their own parents. It is natural for a child to want to investigate. The first time they see a person in a wheelchair, for example, they are most likely thinking "wow, what is that cool chair with wheels?" Whether it is a walker, a guide dog, a wheelchair, someone flapping their hands--it's all curious to a child. So, they stare and observe. Upon noticing this, well-intentioned parents say those two words, in that tone, "DON'T STARE!!"

Most parents, having been raised with that same mindset, don't bother to explain differences or disabilities. They prefer to simply pull their child along and move on. Such a shame. A valuable life-lesson, lost. This message of don't stare, don't look, don't connect with "people like that" continues. I think often it's "innocent ignorance" on the part of parents, and how they too were raised. They're are afraid of the differences they see between themselves and a disabled person (differences are generally not embraced by society). They fear that if they ask a disabled person questions about their disability, that person will be offended. If we never open up a discussion, how will we ever understand one another? People sometimes seem awkward when my husband and I openly speak about autism, or even seizures and feeding tubes. It's not expected, we're not supposed to be open and honest about that sort of thing. This is not supposed to be dinner conversation. Except, it is. It is our life, and we want to educate you--we want to change your perception.

People have been told it's rude and improper to look, so how can they ever approach a disabled person? Trust me, there's nothing rude or improper to say "hello" to a disabled person, just as you would say "hello" to anyone else. Things like "how are you?" or "wild weather we're having" or "this line is ridiculous" and so on, will not offend a disabled person. I assure you. Granted, depending on the disability, a response may not be possible. But, have you lost anything by not even making the attempt, and by treating your fellow human being as just that--a fellow human being?

I was raised this same way. I do not fault my parents, they simply didn't know any better. They thought what they were doing was right. In middle school, I had major back surgery. I wore a cast that began just under my armpits, down my torso, and down one leg to the knee. After 6 weeks, the cast was replaced by a brace of the same size. About 2 months after that, the leg part of the brace came off. It was a months before I was without a brace. Following surgery, I slept in a hospital bed in our dining room, it had a trapeze on it so I could get myself on and off the bed. I had a commode that had to be kept in the laundry room. Our house was not friendly to me, the doorways and bathrooms were too small, my room was upstairs, getting outside required taking 4-5 steps to the front or back yards. My mother had to bathe me. I had a walker and a wheelchair. I remember being ashamed of it all--the cast, the commode, the walker. Part of it was just normal adolescent stuff. I wanted to be healthy, and to just be doing all the things my friends were doing. The other part, was that I felt I had lost my identity. People wouldn't see me--they'd see the cast (or brace), the walker, or the wheelchair. They would see what was wrong with me.

I learned many valuable lessons from that experience. I valued being able to move freely, like I never would have been capable of before my surgery, and will never lose sight of that. I valued privacy and independence, more than any of my friends could imagine. I valued my family even more, for all the support they gave me. I learned how to roll with life's punches, and make the best of it. I learned discipline, from grueling PT sessions. It took years for me to understand the emotions of that experience. I was too young to really understand it all--why I felt the way I did. As I grew up, I realized what I associated with the wheelchair, the special bed, etc. I saw it as weakness. I felt damaged. It took many years for my self-esteem to recover. Why did I feel those things?

Part of it was just my personality. I am stubborn, and I have a lot of pride. This was a challenge, one that I had little control over. I had to learn patience, and in the middle school years, let's face it--that's a tall order. The other part was, back again, to those early lessons and views on disabilities. I was the one I didn't want anyone to stare at. I didn't have a single friend come visit me--that was my choice. I shut myself in. I didn't want my friends to see the medical equipment, to see me in this big, bulky cast. I didn't want them to stare. It took a while for me to realize I was still the same kid. I still loved watching videos, playing games, and having fun. The cast or the wheelchair or any other equipment didn't change who I was on the inside.

It took that experience for me to realize that neither an ability nor a disability doesn't change who we are at the core. We're all human, we all have our likes and dislikes, we are all far more similar than we often think. It's sad to think that it was only being placed in that situation that changed me. From that moment on, I always felt a silent kinship to the disabled people I would pass on the street. I no longer stared at their equipment, at their differences. I saw a person.

I suppose my that was only part one of this lesson for me. I am now raising a beautiful, amazing, disabled child. As a parent of two children, one disabled, one not, I feel a two-fold responsibility (when it comes to disablism). My first, is to make sure my youngest child is respected, that she has the same rights as any other human being, and that she is appreciated for who she is.

For my eldest, it is to make sure I never say "DON'T STARE!" and end any communication about disability with that. I also make it my job that she learns to look past a disability. She has been "exposed" to more disabled kids than her peers, I would bet. From hospital visits, to doctors' appointments, to coming to some therapy sessions with us, she has seen many different disabled kids. I tell her that it's not nice to stare at someone, jut because they are different. Would she like it if in this world, people with blue eyes were considered "not normal" and so people often didn't talk to blue-eyed people like her, and most just stared? How would that make her feel? We are all different, I explain. Just like your sister's feeding tube, someone else may need a walker, or equipment to help them breathe, etc. That doesn't change who they are--they are just like you and I. Like your sister, they may have more challenges. But, it doesn't mean we can't be friends with them. And it certainly doesn't mean we can't be friendly toward them. You can say "hi" or wave, and you can look at a disabled child just like you would any other kid, but don't just stare, as that's rude. You wouldn't like it if someone was just staring at your sister because she is different, would you?

Growing up with a sister who has worn AFO's and has a feeding tube ("equipment," visual signs of disability) is a good starting point for my child to look past the disability. Living day in and day out with autism and seizures, offers a perspective and understanding like nothing else in the world. She and I have discussed many kinds of disabilities, with openness and honesty. This discussion will continue. I see the compassion my daughter has for her younger sister. I have no doubt that when she is an adult, she will not discriminate against disabled persons. She will see them for who they are, and value them, as she would any other individual.

I would ask every parent, next time you see your child staring at a disabled person, not to say "DON'T STARE!" If they are old enough, use that opportunity to open their minds. Don't be afraid, parents, of disabled persons. Whatever the disability that you see on the outside, look past it. They were born to this earth, same as you. Accept disabled persons, give them the respect and dignity you expect for yourself, and without hesitation, ensure that every person be afforded their human rights. Each and every human being has a gift. How sad if ignorance kept you from seeing all those gifts. Autism is referred to as a spectrum. I see the world quite similarly. It is an amazing collage, and all you need to is an open mind and willing heart to embrace all of its beauty.

Blogging Against Disablism Day, May 1st 2008