Monday, October 29, 2012

why??


this is a facbook post/conversation that Chad and I were a part of...it is hard to explain the emotions I felt towards this post...I was sad...I cried...I was in panic the entire time...Chad came home and was confronted with a wife/mother that just cannot understand why people first language is up for debate...why I have to argue and still see no progress in stopping the usage of hate language...Chad reminds me this is a members only club...that people just cannot get it unless they go through it...but I disagree...I think it is a choice to be nice...I think it is a choice to be respectful...

post on facebook... Just before one of my classes starts today, my teacher tells us that she knew a couple who had a child, and they had decided that they wanted to let the child pick its own gender. She would not tell us what sex the child was, she said the sex was not the point of the story. They picked a very neutral name, and raised the child not as a boy or a girl but just as a human. They wanted their child to discover gender for itself, and make up its own mind. I thought this was a very interesting idea, actually I considered it a very thoughtful idea, and was hoping it would promote some good conversation.

Instead a man in my class, who just happens to have a pregnant wife says, "That is retarded. That child is going to be a wreck." Teacher says - "What do you mean?" Man says - "Retarded parents are going to produce retarded kids, and those parents are retarded." Teacher says - "Because they are giving their child a choice to determine its identity?" Man says - "Yes, that child is going to be as stupid as its parents. Just retarded."

FB1: Youve got to be kidding !!!!! What class is this ?

Kimberly Ludwig Sharpe: And you did not tell him that you are offended for the usage of the r word...this is highly offensive to me...and I have totally lost the whole I could big fat shit that kid does not know if he or she has a wiener...that guy n Ann coulter are as non educated as they come...I mean really people first language should be used by everyone including your teacher...smiles

FB2: He may be retarded.I can understand where he is coming from. Obviously, social behaviors would deviate from the norm and whether it's thoughtful or not, doesn't mean it's appropriate. I can clearly see how this might lead to an array of mental problems down the road, whether these influences are internal or from external influences. I think it's wrong - even if the intention was thoughtful or well intended.

Kimberly Ludwig Sharpe No i am not sure the r word implies anything but these people are stupid..n people with intellectual disabilities r not stupid...they process things differently...poor choice of words for a very interesting topic...really the r word is inappropriate always, anywhere even in a clinical setting..the person that is born being gender neutral will be just fine...because its there norm..others usually have the issue with different

FB2: Kimberly, the 'r' word isn't bad. It's in what context it's being used in. Quit holding onto your feel good bullshit. It bothers me that you honestly believe that child would be normal in society. Being 'gender neutral' is NOT normal. Regardless of how YOU might feel about it. The fact is, most people won't be okay with it. For that reason, that child is going to have incredible amounts of bullying and other pressures in his or her life that is going to be a negative affect in their development. Depression, suicidal tendencies, low self esteem, etc are going to be very real for this child. Gender roles aren't unique. They are pretty universal throughout civilizations. There's a reason for that. A biological one. I think when you go against nature, it's going to cause problems. In theory, this is great - sure, I think people should dress how they want, act how they want, pursue any interests they want. In practice, whether I agree or not, that isn't reality.

FB3: That child will be what ever he, she was ment to be . I am a parent and you do all you can to raise a kind loving human being and disregard what lifestyle they choose, The one I would be concerned with is the man that would use a word like that and not have anyone stand up and call him on it. Yuo can bet I would have, being as I have a mentaly handicapped neghew. How could anyone so low-life be in your class room And not have the teacher ask him to please choose a more fitting term for his idiot statement.

FB2: I don't think most parents are accepting of having a child that is 'gender neutral'. I think a lot of parents would have issues if their son for instance was dressing up and acting as if he was a girl. Do they love their child any less? No, I don't think they would. But they wouldn't accept that lifestyle.

Kimberly Ludwig Sharpe really the r word is not bad? wow..please rethink this...a person with intellectual disabilities may say otherwise...

Kimberly Ludwig Sharpe FB2 you are sitting in a classrom in alanta ga and you are the only white kid in the room...and the bell rings...and you get up...walk out in the hallway...and you see a buddy...and he walks up to you and says something stupid "thats nigger"...and everyone in the hallway is black and turn and look at you...and if you are lucky...they will simply say did you just say "thats nigger"...and you can imagine that you would get an earful of you should not say that word...and if you were around a bunch of black people a tad bit angry...you would get your ass kicked or killed...point being you being white are either enlightened enough not to say the word...because it is offensive to a group of people...or you are a coward and you know you will get your ass kicked...and now imagine walking down the hallway and he says something stupid and you blurt out "thats retarded" and you did not realize that a child with disabilities walking past you...and you do not noticed this person...but they noticed you and what you said...and even worse...most likely you still would say it...knowing damn well that this retard cant do anything about it...and what worse cannot...and that makes you a bully...and worse kind of bully...its the kind of high school bully that would walk up to a kindergardener and kick then in the face...and then go brag to his friends...that he kicked come kids ass...its beneath civilized individualize to use any r word, n word, hate language...at anytime...

Kimberly Ludwig Sharpe on the boy dressing like a girl...my son today has long blond hair and wears a purple snow hat...not a big deal...but to insecure adults it is...that is a you issue not a i issue...

FB2: There's a big difference in how people perceive the use of the word nigger compared to retard. I find it interesting that you are able to make this connection with the word nigger, but not able to fabricate a scenario on how this child would be treated for being 'gender neutral'. There's also a big difference with having long blond hair and wearing a purple snow hat and a son actively living the life as a woman.

Chad Sharpe: FB2...with respect, Kim and I are the parents of a beautiful little girl, named Maddie Rose...she was born with an extra chromosome resulting in her being a child with Down Syndrome...by definition that makes her intellectually disabled or in the pop lingo "retarded"...you state that there is a big difference in how people perceive nigger compared to retard... i don't believe you have any basis for your ad populum statement....you can choose to believe that we don't feel the same sense of degradation than black people feel when they hear the n-word, but that is just your belief...by all means, use your freedom of hate speech card, then one day you will have that horribly uncomfortable moment when you assert it at the expense of the intellectually disabled person next to you in line at Wal-Mart...my wife's argument is sound and ethical, your argument is that "i should be able to use it because i say so"...that is both extremely insensitive, ignorant of much better words than "retarded" to describe a person's behavior, and in bad taste...the only reason that a child that was gender ignorant would ever have issues is because people are assholes, unethical, mean-spirited assholes...people choose to be assholes and then call the genderless kid weird...

FB2: I didn't state my argument was that I should be able to use the word retard because I say so. I think you need to revisit how to use quotations - because you're not quoting what I said and you sure aren't goin to put false words in my mouth. As I said, the word retard can be used in many different contexts. That to me is much more important than labeling it as the 'r' word and having a tantrum fit anytime someone uses the word. I don't agree with someone calling a child or anyone for that matter with a learning disability a retard with the intent to degrad that person. My car retarded too long. Are you going to gasp at that? No, of course not. That word is not bein used Ina degrading manner. So, yes - I have a hard time calling it the 'r' word. It isn't in the same light as the word nigger.

FB2: I get it - there are more PC ways to go about this. I agree. Regardless, this is off track to what I was saying in regards to gender neutrality.

Chad Sharpe To you it is not the same. To people who live it, it is the same contemptuous hate speech that hurts. In general, people can't understand this until they personally experience it. Appropriate use of retard is not the issue. I disagree with you that this is off track. This is exactly the issue. Your belief that the genderless child is damaged is unfounded. Just because the majority claims that something is wrong, weird, unnatural, etc. does not make it so. I could claim as a non-religious person that raising a religious child is weird and detrimental to the natural order of things. Billions of people do it to their children and they call it normal, claiming that it does no harm to them. Why do they claim this? On what authority do they claim to assert their beliefs onto their offspring? Yet this is normal and therefore society is accepting of it. So much so, that we protect it constitutionally. Your argument that " I can clearly see how this might lead to an array of mental problems down the road, whether these influences are internal or from external influences" is exactly how homophobic bigots try to scare gays straight. "Its not normal, therefore it is evil, stupid, unnatural etc." I assert my right to call bullshit on ad populum arrogance.

FB2: I completely agree with you - people can't understand until they have personally experienced it. I agree 100% with you there.Chad, my argument isn't unfounded. I don't agree with the majority on this. I also don't think the majority is always right. But, to say that my argument isn't valid.. that's ridiculous - look up how many teenagers and adults grow up with mental disorders because of being different. How many teenagers commit suicide because of bullying? Are you prepared as a parent to put your child int hat position to play a social experiment - to see whether society is willing to accept that? What if society doesn't? What do you think is going to happen to your child? Is that responsible parenting? I'm all for education. I'm all for building tolerance. I'm not for putting a child into a lion's den and hope for the best.My argument isn't the same and isn't how homophobic bigots try to scare 'gay' people straight.

FB2: My brother is gay and I have a niece who has aspergers syndrome. I'm very much aware and in touch with their struggles.

Chad Sharpe My problem with your argument is that it is based on fear, not on love of my child's right to explore their gender. If I lived in fear of our society, then I would be raising my son and daughters to be a Christian as this is most certainly a "Christian" nation. Being a non-religious person was punishable by death at one point in our history and still is in some parts of the world. If I let society dictate my freedom to parent and raise my child to not defend their rights as a human, then mental issues may arise. I am not raising my children in that manner. I am raising them to look people in the eye and say intelligent things in defense of humanity when ignorance and intolerance abound. It would really be no different than raising a gay child in today's society. Part of being enlightened is stepping out of "normal" and being what and who you are despite what people think. These parents are giving their child a gift that most parents and people have been socialized to hate.

FB2: Chad, your child will have to interact with the world and that means society - whether you like it or not. Whether you want to accept the values of society or not. That response from society isn't always going to be met with the same degree of evaluation or consideration that you or I or someone else might put into this issue. At the present time, let's be honest - society is not going to be kind to a child that is 'gender neutral'. I agree with you - this discrimination and hate shouldn't exist. But it does. How do we change that? We educate. Not use fear as a tool. However, as I said, I think it's irresponsible, whether its right or not, to throw your kid in a lions den like that. Society is not ready for it. And that child will pay. I guarantee it.

Chad Sharpe If I lived my life that way FB2, I would have aborted my child with Down Syndrome.

FB4: For what my penny and half is worth, here is where I'm at.I think there are many types of conversations, there have been two types in particular that I have been involved in lately. There are conversations in which there is a right and a wrong. In this type there are firm statements to be made. 1+1=2, evolution is a fundamental process of biology, mass and density are related, but not the same, just as weight and mass are related but not the same. But things don't always exist in such close proximity to anything that can come close to the idea of "truth". And then it comes down to people arguing for truth, regardless of how futile the venture really is.I spent the last nine years of my life with the love of my life. He was for everything I have the ability to account for, the most important, and most beautiful thing I have ever known. I made a lot of choices with him that most people don't consider. I thought it was important to allow him to develop into what he was, as opposed to what I thought he should be. I'm mostly a series of dumb idea's, but I claim here I did something right. Neo grew into something greater than me, something profoundly better than I was. In the end it came down to me falling behind what he had become. Not being able to keep up with how great he was.I don't expect anybody to understand that. Frankly nobody can. They can again say any of thoughtless shallow and ignorant statements that I had to live through his entire life, while he was dying, and after his death. They can lay any bit of stupid on the table, and I will as politely as possible, tell them they can kiss my ass. There are the people who understand they can't understand and offer their love and empathy, and there are the rest offering what they always offered, their narrow perspective on something they never even attempted to understand.Neo almost always had to be disappointed. Because he accepted people his entire life, and most of them just judged him. It hurt him, and that hurts me. Neo only did two things wrong in his life. He was born a dog, and I took him and taught him that there was nothing wrong with being a dog. But, even though I found out in more profound ways than I wanted to how full of hate and self interest people really are, if I could turn things back, I would do every day over again. I would never change what Neo was, because being "just a dog", he was better than the people who are supposed to be so much better. I would never take away from his greatness, because of those who were not. I know that doing it over, mostly I would have to fight the world all over again, but I'd take on the universe if that's what was needed.I don't care what people thought they knew about him, what people thought about how I lived with him, how he acted, or any other detail of his life. I don't care what either stupid or hateful thing they had to say about him. I don't care about their judgment. I never factored it in, and not a chance in hell I would have. The world can be whatever it wants to be, but I had Neo, and he was the world to me.I recognize that means close to nothing to just about everybody. But it doesn't to me. I learned what is a very important lesson to me. Stopping others from being who they are, because of judgment, harassment, anger, threats, because it is not how other people do things, because it will be hard, because it will require work, because it will require you to be involved, to get uncomfortable, to rethink, are all just really different ways of being weak. It is not different in any facet of life. Just a dog, is just a nigger, is just a retard, is just a girl, is just a Jew, is just a dike, is just a spick, is just a. We separate these because of our own weaknesses, not because they are separate. It is easy to minimize the pain when it is not yours.I have a niece with down syndrome, and I really don't even think about it. The only things I ever think about are if she is OK, and if she needs anything. People are going to say narrow minded and ignorant things about her to. And I will again, politely tell them they can kiss my ass.I don't think there are such things as bad words. I think that words are words. But I also have seen how words hurt, and recognize that in the case of using words like retard it is not about what I think that matters. I think the voice that needs listened to here is not mine, it is instead the voice of those that have not been heard. I don't really care what I think about the usage of retard, I care about what the people who have been hurt by its usage think. I care what they have to tell me about what it does to them, how it effects them.When my niece gets older I hope that she can look to me as somebody who chose to love her freely, I hope when she looks back on me she can never think of me saying words that hurt her. And if I have to take my views about words and modify it a little bit, so that I can give that to her, of course I will. She will know people who say mean things about her, but I would rather be the person by her side than the one across from her.Progress often asks of us to redefine how we look at things. It is old ways of looking at things that hold us back, not move us forward.

FB5: I wanted to leave George Carlin's argument on euphamatic language here, because I think he brings up a valuable point. If they hadn't changed the language of 'shell shock' (a very serious battle condition, of course), to things like....post-traumatic stress disorder, those veterans from previous wars might be cared for more. There's no reason we should be scared of words, or phrases, unless they negatively effect us in some way that it is less applicable to use them. I think it is wrong to label mental retardation, a medically based term used for many years, as 'intellectual and developmental disabilities,' and a slew of others that I think will negatively affect the way we go about caring for and handling (I will say it) intellectually disabled persons. At that same regard, it has become in pop culture a negatively-associated term, a derogatory name. I guess my point here, is, where do we draw the line? Does terminology directly influence how we treat people with cognitive impairments, ect....or does our treatment of these conditions decide the term? It bothers me because in a way I think people take advantage of things they don't understand, and so we create an entirely new language to cope with it.

FB5: 'We' being the people who actually know or care for intellectually disabled persons.

FB4: I don't think it can be argued that the change in language from shell shock to post traumatic stress disorder was done as a act of compassion, or even as one that was in the best interest of the men and woman suffering from it. That is politics.I would never ask for the government to make any legislation against free speech, except to support free speech. These issues are not solved in senate, they may begin to be resolved when people can take a look in the mirror and get honest about what is looking back at them.Changing language does not correct people taking advantage of what they don't understand. Not saying nigger does not mean your not a racist. Not calling woman sluts, is not giving them equality. You can't legislate away ignorance, anymore than you can hide it. This is not about redefining language. To me, its about redefining ourselves. I'm not afraid of that.

FB3: In my opinion it all boils down to havinh manners,, because using degrading words shows a deep lack of respect for humans that are being described. I went back over all the posts and it seemed to me after finding out that some of us have a handi-capped person in our life that Kevin started backtracking pretty fast. People judge and always will, they will judge Chad and Kims little girl just the way they judged Neo for his breed , size and instantly asumed he would be mean. Man kind does not take the time to see the inside of anything or anyone, because they are too afraid they may find a little bit of themselves.

thoughts??? anyone???

Monday, October 22, 2012

Social...


I am very sensitive about anything social with Maddie...my first impressions of a young woman with Down syndrome were very scary to me...and when the dignosis of Maddie was real it was what I pictured in my head...and through the years many of the stereo types have been broken down...but still I am very sensitive and over protective over anything Maddie does in public or socially...having a home daycare has intensified this so much that at times I have thought of it as to much emotionally for me...I have a home daycare to raise my children in an environment providing a educational/home based setting...my background is in early childhood so it was a perfect fit...with Max it was fun and rewarding...I loved to teach him and watch him be mentored by older kids all under my watch...then Maddie came...when I reached out to our local child development center that would provide services to Maddie one of my first questions was do I keep having a daycare...or will it be to much for her...really what I was asking was would it be to much for me...they said this setting was the best setting for Maddie's development...that it would model and nurture what she needed...so I never thought twice about it...my home daycare became Maddie's classroom....and my greatest fear...no longer was it fun to watch what my child could or could not do...no longer was it fun to see her excluded from play because of the lack of communication...I struggled with watching children who are younger then her pass her by with milestones and words...I think struggle is a kind word for my true feelings of saddness...day in and day out I watch what Maddie cannot do...for the people who say Maddie is good for Maddie...yes that is true...and that she has mastered a lot of things...but not at the rate I have come to expect...and this truly is a members only understanding that no one can understand...unless you are the mother of the child that is not doing a particular something...Maddie socially has always tested as typical and above average on the charts...but what those tests do not do is show the whole picture...yes Maddie can play dolls and dress up, she can zoom cars and roar like a dinosaur...but what they do not gauge is how the interaction happens...Maddie does not take no for an answer...she does not except when I am finished you can have the toy...yes this is typical for a one year old...it is not for a three year old...negotiation for toys begins at age one...understanding a trade...maybe not a fair trade but they understand the give and take...by age two they understand the quality of a trade and the give and take that happens in a child's negotion of a desired toy or tool...Maddie thinks she is above the trade and is very elementary in her negotiation skills...I have always said the most important thing to teach a child before kindergarden is how to get there shovel back from a child that has taken it...without tears, fighting, or just taking...by proper negotiation...Maddie is 3 and she cannot communicate to get her toy back...she will scream, tackle the child down and take it back...socially this is not acceptable...funny...but not in the "real" world... if I did not know better I would think Maddie is ok...but I do know better and I know what her interaction should look like...and I think she does to...but her impulse control is off the charts...she cannot keep her hands to herself...her screaming and stomping is alarming to say the least...Maddie plays very good with kiddos that are a bit older that are willing to accommodate her every wish...this is the real world and most kiddos do not want to play like this and nor should they be expected...I will tell Maddie no and redirect her 100 times and she will do it again for good measure...I have never met a more stubborn child...I know she knows better...I can see her wheels turning but she just wants it that bad she will not give up...I do enjoy her milestones and celebrate all of them...what is nothing to some -is huge to us...the other night in tumbling the kids did not want to sit by Maddie and were saying she was a baby...she is older then all of them...but that is there perception of a girl that is small in stature and cannot communicate with them...my daycare kiddos will treat her as a baby also and I have to remind them she is a big girl and will be included and that she can do things herself...most of these kids are younger then her...but they see her delays...I still get sad by each comment...I still cry when I see her struggle...I still want to protect instead of seize the teachable moment...I also do not want to force the issue with others or with Maddie...this is a unknown of helping raise a child that I am very unfamiliar...Maddie is so many things...good things...great things...I am just at a loss when it comes to her interactions with the outside world...in the beginning I would be offended by the smallest or biggest of things...now not so much...now I get a sting...a pit in my tummy...quick...I rationalize each comment or gesture...but the reality is the same...Maddie will always be good for Maddie...but i am not sure if that is good enough for me...when do I stop making excuses for things she cannot do and excuses for the perceptions that people have about Maddie...when is it politically correct to be honest about my expectations of myself Maddie and the public...when is it ok not to apologize for Maddie yelling at a stranger in the mall; because that's her telling her story...when is it ok to tell the person that used the "r" word that it offends me and that I hate them for it...when is it ok to tell the old women that my pointing staring and whispering at my child is not a compliment and is really annoying...and how do I get it through to people that Down syndrome only means one thing...an extra chromosome...that's it nothing more...and it's ok not to attach anything else to it...no but...no and...no nothing...Down syndrome means a 3rd copy of the 21st chromosome...no need to think any more about it...

Monday, October 15, 2012

Happy Happens...


And it does...really...as I hear Maddie singing in the mornings...happy fills me up...when I enter her bedroom and she is standing up dancing in her bed...happy is the emotion that fills me...when she grabs my face and kisses me with passion...happy is it...pure...not questioned...happiness...never...I mean never did I think i could feel this emotion again...it flitted in the beginning of our journey...but it was rare and fleeting...almost empty...because I knew it was missing...and I knew I was robbing my family of the good me...the happy me...the funny me...this digging out from depression has been rough to say the least...on me and my family...but I missed me...and I wanted to be healthy for my family...little by little I made changes...I regulated who I interacted with...I learned to say I don't care...I started exercising daily...I ate less proceed foods...I talked positive to me...i hugged Chad longer...I held my kids more with a smile on my face...little things...I only read and watch things that will educate me not infuriate me...and if they do I talked through them and found my own truth...and in this process a strange realization crept in...one I never thought I would have...I was sad and almost disappointed when I realized Maddie made us no more special as a family...that we were really no different then the family across the street...having Maddie in our lives makes us no better, no happier, no more stressful, no more anything...just a family of four...everything has fallen into place...even doctors visits are routine and mundane...when we received Maddie's diagnoses never did I think we would be looked at as a family in normal terms...but we are and that in it's self is hard to wrap my head around....I thought I would have a sense of relief...a sense of joy...a big woop woop! But I got nothin! I got a big...wait a minute...we are a special family because we have Maddie...nope we are a special family because we all are special in our own way...that's it...nothing more...issues we have with Maddie we have with Max...different....but the same...again something in the beginning I could have not been told...I would not have believed...through this one thing has been abundantly true for me...that I have to find my own truth, reality, happiness, peace no one else can do it...I am a person that cannot be told what to do or how to do it...I have to fumble through...frustrating...but I am who I am...happy...and ok...and my daughter and son...are normal, funny, frustrating, and are going to change the world...because they are my kids of course!

Monday, October 8, 2012

typical days


This is a collection of pictures that best represent Maddie...what I love about them is they are not posed or thought out...just real life, typical, normal Maddie...and what they do is show others that designer genes...are just that designer...it does not mean life is any more crazy...when the doctor asked me to terminate or kill Maddie as she was kicking my tummy...I remember thinking this will never be...none of this will happen...I think i thought Maddie would just sit and look Down syndrome...I don't think in those early days I thought Maddie would do much of anything...let alone who she is today...there is no high functioning or low functioning with designer genes...there is just extra chromosomes...that is a stereo type that needs to be shut down...if that is the case then Max and Maddie are both very high functioning kiddos...Maddie walks, communicates, gets in trouble, climbs, falls asleep in the car, goes to school, has friends, plays with barbies and dolls, and she will grow up and be an adult and she will talk like an adult and act like an adult...she is NOT a eternal child...
HAPpY DOwN SYNdROMe MOntH!

Thursday, October 4, 2012

Surprise 21...


This is a list of 21 surprises that I have had along the way... 1. Cuter, funner, more then I thought she would be 2. Naughty, and more spunky 3. Smarter and more in the moment 4. Fits into our family perfect 5. Independent 6. Typical 7. Manipulative 8. Relatively healthy 9. She is still alive 10. And I am thankful for it 11. She has individual wants and needs 12. She can make grown ups very uncomfortable 13. She can make grown ups more thoughtful 14. She loves music and dancing 15. Her medications are manageable 16. She understands her role 17. An extra chromosome makes her no different 18. I would not take the extra away or change it 19. I still would take away her health issues 20. I am ok 21. I survived At the moment of diagnosis none of this was in my truth...it was gone taken...the more you know!