Wednesday, October 24, 2012

Bullies are everywhere….

***Warning – The R-word is mentioned throughout this post.  Readers discretion is advised.***

Do any of you know who Ann Coulter is?  Until this week I had never heard of her.  She is a political commentator… among many other things.  She is making big headlines this week because of her Twitter posts that have outraged a lot of people including many parents of children with intellectual disabilities, like me.  She has not once, not twice, but three times used the R-word as an insult towards the President of the United States. 

The first tweet was about a video the president made for the National Forum on Disability issues.  Here is the video:  Here is Ann’s tweet: "Been busy, but is Obama STILL talking about that video? I had no idea how crucial the retarded vote is in this election."  

Then after the presidential debate this week she tweeted: "I highly approve of Romney's decision to be kind and gentle to the retard."

Then she went on: "Obama: "Stage 3 Romneysia" - because cancer references are HILARIOUS. If he's "the smartest guy in the room" it must be one retarded room."

How does this make me feel?





And believe it or not, Thankful! This evil woman brought attention to a huge issue that plagues our vocabulary, without even realizing the impact. The R-word is a derogatory word.  Sure, perhaps her followers may have thought her comments were funny and/or think that it is OK to use the R-word, but not without hearing from the people that the R-word hurts…prompting more people to take a stand against using the R-word.  The media is blowing up over this, which only continues to raise awareness to end use of the word.  These articles will get posted millions of times on Facebook, Twitter, MySpace, and emailed all around.  Because of that, I am thankful.  Check out this amazing letter to Ann from John Franklin Stevens who is a Special Olympics athlete and global messenger:

A few weeks ago I had an email conversation with someone over their use of the R-word that was sent out in an extremely large email chain.  The person was upset that I didn't  come to them directly instead of replying to all, but someone followed up her email backing her use of the word so I felt I needed to reach out to everyone on the email chain.  The conversation between us hasn't been long forgotten by any means, but this media coverage was like pouring Jack right into the wound.   When the incident happened, I talked myself out of blogging about it.  At the time I thought I made my point and that was good enough, but it still plagued me because I was keeping this from those who follow my blogs.  I am the quiet one, who doesn't like confrontation.  I have been sitting on this for weeks, debating with myself whether or not to share this experience because several of the people who were in the email chain are Facebook friends and that is the source I share my blog from.  After reading all of these articles on Ann Coulter I decided I need to get it out there instead of it hanging over my head.

This was my reply to all email after someone used the R-word: “I find the R-word very offensive and would love it if my familia would discontinue the use of it.  My son, Jackson, has a mental impairment called Fragile X syndrome and when you use the R-word you hurt me and my family very much.  You wouldn't call my son a RETARD to his face, but when you use the word you not only hurt my family, but others who have a mental impairment.  There are so many other words you can use... so I challenge all of you to take the pledge today to end your use of the R-Word.  It only takes a few seconds...

I received a lot of responses from other people on that chain supporting me and apologizing.  It provided me some comfort which I needed because of how the way the rest of the day went.  The emails I received directly from the person who used the word never apologized; at least I didn't feel that she did.  Her responses to me were in all caps and were full of nothing but excuses for why she used the word.  She called my sons disability an “ORDEAL” and claimed that it wasn't a personal attack against my son.  She went on to explain to me that she has worked in the field for 23 years and knows and understands these impairments.  That we all have impairments in one way or another and after being in the field for so long, she chooses to laugh rather than cry about the inadequacies of her friends.   That is her business and if I have a problem with that she said to feel free to come at her on a personal level seeing that I took it personal. 

So I responded this to just her:
Fragile X syndrome is a genetic syndrome that is the most common cause of autism and, for lack of a better term, the inherited cause of mental retardation/impairment. Yeah my son has special needs, but I don't see it as an ordeal.  I took it personal and because I live with it every day and I will continue to take it personal until my last breath. Once you used the R-word, then others quickly followed which made it look OK to use.  I am glad that you are able to laugh rather than cry about, but I choose not to.  Just because you work in the field doesn't give you the right to use it and when you do it tells others it is OK.

The R-word is a derogatory word and it hurts me to hear it, sure that is on me.  You and I have talked about this before, however I was really intoxicated so I don't know if I made my point on how it makes me feel, but I know you saw me cry about it.  When I hear or see people use the word I try to seize the opportunity to teach and advocate about the use of the word and how it affects me.  If you continue to use the R-word in everyday language, that's on you.  And you know it hurts those around you, especially this kid who loves and looks up to you.  In the beginning after getting my son's diagnosis it was hard for me to remove the R-word from my vocabulary, I am not a perfect person by any means.  I saw an opportunity to speak up about how the word affects me as a parent of a son who has a mental impairment.  I know I may not be able to remove the word from everyone's daily life, but if I can reach one person then it is worth every breath.”

The response I got in return was again in all caps, but again it didn't feel like any sort of apology.  She again says it was not directed towards me and feels that there are other words that should be removed, even listed them.  She said she respects my opinions and feelings, and I can choose to respect her or dislike them as I wish.  She again states it was not directed towards me or my family, but if I like I can choose to use her comment as a grand stage for my cause because she doesn't mind because she knows who she is and what she stands for such as myself.  And she loves the people she works for.  

The thing what makes it worse is that she works with people who have intellectual disabilities for a living.  Years ago I remember hearing her standing up and putting people in their place for using the R-word.  What happened to that?  I felt defeated after our emails back and forth, but not to the point I would start using the R-word in everyday language.  Perhaps she feels defeated after all the years of standing up for those who she works for, but it gives her no right to use the word.  I have run into this individual once since this email conversation and neither one of us spoke to one or other.  She might read this blog and be irate that I wrote this.  However she did tell me that if I wanted to use her comment as my grand stage then she doesn't mind.  I read another blog that encouraged me to write this up:

I will continue to ask people to stop using the R-word when I hear or see it and challenge the user to take the pledge to spread the word to end the word

Thursday, October 11, 2012

The Controversial Topic of Bullying

A person very close to me witnessed an event in a school cafeteria.  I am not going to mention the school this happened in or the persons involved to keep them protected. The event really upset the adult that witnessed, it upset me as well.  The event also prompted me to research what schools Missouri schools define as bullying.

The majority of the schools defined bullying in the following matter: Bullying includes a wide variety of behaviors, but all involve a person or a group repeatedly trying to harm someone who is weaker or more vulnerable. It can be physical, verbal, sexual, or psychological. It can involve direct attacks (hitting, threatening or intimidating, malicious teasing or taunting, name-calling, making sexual remarks, stealing or damaging property) or more subtle, indirect attacks (spreading rumors or encouraging others to reject or exclude someone).

Teasing is defined as to make fun of, irritate, or attempt to provoke (a person or animal) in a playful way with persistent petty distractions, trifling raillery, or other annoyance, often in sport.

Most of my research on the school districts also stated that teasing becomes bullying when it is repetitive or when there is a conscious intent to hurt another child. It can be verbal bullying (making threats, name-calling), psychological bullying (excluding children, spreading rumors), or physical bullying (hitting, pushing, taking a child's possessions). 

The scene setting is a middle school cafeteria.  A really anxious child went to sit at their lunch table, but all the seats were taken and it was really loud, so the child went to a different table.  The different table happened to have children who were a year older.  The anxious child sat at the table and started covering their ears while munching on Cheerios for comfort. 

The older children started making fun saying, “Put your hands down! Quit covering your ears! Why do you eat Cheerios all the time?  Why do you talk like that?” all the while laughing as they continued to make fun. 
An adult noticed this interaction and went over asking the children to stop.

The child who was being made fun off told the older children, “I am zipping my lips and not talking to you”. 

The older children shouted back, “Well then how are you going to eat your Cheerios” as they giggled and continued to make fun of him.  The children obviously didn't listen to the adult.  The child who was being made fun continued as though nothing was going on, eating his Cheerios and holding his hands over his ears.

The adult asked them to stop again and then reported this to the school principle and their boss.  The boss said, “You can’t change the world and these kids aren't bullying that child yet”. 

The adult started crying, taken off guard to this response; it was personal to this adult because they have a relative who has special needs similar to the child who was being made fun of.  It appears to this boss that bullying is only when physical abuse is occurring.  The adult and I chatted back and forth over this for a while.   The adult was distraught and felt the child who was being made fun of didn't even realize that was going on which made their heart sink further. 

I thanked the adult on behalf of other special needs parents for speaking up, reporting the incident, and for being a hero, at least in my eyes.  The adult is most likely right in feeling that child didn't understand what was going on around them.  The adult was so upset worried that the parents of this child will never know what happened.  My son is non-verbal; he can’t tell me what happens at school.  Even though he is only 3 and in pre-school I ask him every day, “How was school today, buddy? Did you learn and play with your friends? Did you see Aidan today?”  He always smiles at me and answers, “Yah” with a giggle.  Aidan is his classmate and is one of his friends…so I know he will respond to that.  My hope is when he is older he will understand what I am asking him and will be able to answer. 

I feel there is a huge misconception on what bullying is, in the incident above the boss told the witness that it wasn't bullying because there wasn't anything physical.  Maybe I am wrong and don't understand what bullying is, but I strongly feel this child was bullied, but others might argue that the child was just teased. Personally I think this staff at this school should go through a bullying training to better understand that bullying is not just physical.  I would even attend a bully training to better understand it myself.  I also read in my research that it depends how the child (victim) reports the incident, but what if the child doesn't know how to report the incident or they aren’t capable of reporting the incident? Other kids who witness bullying events can report them and that is awesome, but what if they don’t understand what bullying is either?  I saw a lot of great articles were schools as early as elementary age participate in bully training, but it shouldn't just fall on the schools to teach the children, parents need to step up to.  I know, I am preaching to the choir here..   I know so many parents who read this will either be extremely upset like I was and some that just think kids can be so cruel and just blow it off as it were nothing.  What do you think…was this child being teased or being bullied?

Growing up I was verbally and physically bullied.  During elementary age while walking to the bus stop a neighbor a few doors down would push and shove me, threaten to kill me if I told my mom, and on one occasion slapped me across the face.   My mom saw that happen and had a very long talk with her.  After that the abuse stopped and that girl never spoke to me again.  During middle school age I was teased for being a tom boy and not wearing makeup.  A group of girls would ask me if I knew what a dyke was and the follow up with the question asking me if I was one.  This happened for days until another student stood up and told the girls to stop, from that day forward those girls never asked me again.  The verbal abuse did not bother or scar me, maybe because of the experience I had at a younger age, or the way my mom thought me that sometimes it better to turn the other cheek and stick and stones.  I always felt you can make fun of me all you want, but you can’t make fun of my friends or my family.  The only fist fight I had growing up was with a boy who made fun of my brother and my childhood best friend.  The fight was quick, the boy hit me in the face and I fell to the ground.  When I stood back up, the boy took off running.  My friends said it was because I had a look of rage like I was going to rip his head off and I was screaming like a demon, perhaps I levitated off the ground because the group of boys looked really scared.  All I remember is being so mad that tears were streaming down my face.  That boy never teased my brother or friend again, so that was all that mattered to me.

To all those people who stand up to bullies, thank you so much for being so courageous…  please don’t stop standing up for others because it makes a difference.    

Tuesday, October 9, 2012

Wake me up when September ends…

Seven years has gone so fast.  Wake me up, when September ends. Here comes the rain again, falling from the stars; drenched in my pain again, becoming who we are. As my memory rests, but never forgets what I lost… wake me up, when September ends….

I can’t believe 7 years ago this past Saturday you lost your ever so courageous battle with cancer. So much has happened over time, but there isn’t a day that goes by that I don’t think of you.  Memories of us growing up together still fill my heart with joy and laughter.  I know you are looking down or maybe up (LOL!) and watching over us.  I can hear your footsteps in the morning, well I used too…we moved dude, come on over already.  I wish you could meet my son; I know you would be proud so of him. He is such a happy busy boy. He works so hard every day to just exist in this world and he reminds me of you sometimes especially when things that come easy for some people that are not so easy for him.  He strives for our acceptance and praise when he accomplishes anything.  He laughs at the same things we did as kids, poop and farts.  Teehheee…  You were right when you told me about your children, he is truly the best thing I have ever done with my life. I love and miss you so much my little big brother.

P.S.  Cancer still sucks…

Wednesday, October 3, 2012

The big move part 2

The move itself went really smoothly; it was days leading up to the move that was rough.  Jackson needs full attention, you can’t just plop him in front of TV or his favorite toys, the iPad may give you 5 minutes.  You can’t expect you are going to get anything accomplished when he is in the vicinity.  I tried once and he dumped the box I filled in 2.5 seconds flat. As I tried to clean up the dumped items, he was clearing the table of the packing tape and sharpie.  Oohhh a sharpie…sweet find for him as he was taking the lid off to draw on the wall I patched and painted a few months ago… Luckily I was able to grab him before that happened or before he had sharpie mustache or tattoo arm sleeve.   We did have help watching him leading up to the day the movers showed up.  Weekends and weeknights people would come over and watch him which was very helpful.  I know we couldn't have packed at all if we wouldn't have had that help.

The night before the movers came, I left the new home after painting to help Sara with the last of what we could get packed in a box, you know those hodge podge boxes of stuff that are not organized..  It was one of those kinds of packing nights.  I remember getting home, taking a shower, and then laying on the hardwood floor feeling like death warmed over.   Sara and Jackson were on their way after having dinner over at her parents, Andie was on her way to watch him, and I could not move from the floor.  Every fiber of my being was sore.  I have had tough workouts throughout my career in sports and nothing even compared to how my body felt at that moment.  Even though it was a brief moment of rest, I was able to muster up energy to help pack more boxes. 

I don’t remember going to bed that night, or how was I able to get up the next morning.  I left early to meet the Charter guy at the new house.  Even then I couldn't just sit and wait because I wanted to make sure what we had already brought over was out of the way of movers. Charter came and had trouble getting tone on the line, so they had to run a new cable outside to the house.  I brought a laptop and a mac as I know you need to test the connection once it is live.  The Charter guy also had some tests he had to perform, but I made him connect via a cable into my modem/router vs. giving him my router configurations.  The internet was up, but there was one test of his that kept killing the connection.  The Charter guy told me that most likely it was modem and tried basically sell me a Charter modem.  I explained to him that it was not the modem, but the test itself, most likely this happens on all personal routers, he said yes…for some reason they have trouble with this test.  I believe this a ploy they use to get customers to buy their crap.  I explained that it is cheaper for me to buy and configure my own equipment than it is to rent Charter’s, there was no argument there.  I also explained that I have had this modem at two previous homes that both worked fine with Charter services, there was no argument there.  He told me that I would need to most likely upgrade my modem to handle the high speeds that Charter has to offer. I explained, in my house we don’t need anything higher than what we have, but thanks anyway.  Each time his test failed, you had to reboot the modem to regain connection, although I bet if we waited a little awhile that would have worked too.  I told him it wasn't necessary to continue to push this test as it is apparent it doesn't work.  I told the guy I did IT for a living, but he didn't know what that was.  So I explained that I have been supporting computers and servers for over 15 years, but he gave me a look of not impressed.  Either way, the internet was up and working which will make everyone in our house happy.  Did I mention this guy looked like George W. Busch Jr.?  Seriously, could have been his brother…

Sara called shortly after the Charter guy left, the movers were almost done and they were getting ready to swing by the storage locker to get the rest of our belongings.  It was only 11:00 AM, so they booked it.  I figured they would stop for lunch on the way, at least that is what the last movers we had did, but they came straight over.  There were 3 of them, so that helped a lot.  Sara stood in the hallway of the entry way guiding them with each load.  They had trouble getting the box springs up the stairway to the 2nd level, so they passed it through the Veranda.  They ended up passing the bed frame through there as well.  With all the stuff they moved there was only had one causality, one bottle of my pumpkin ale homebrew.  I am not even sure if was a causality though because the less than half case is over 2 years old.  I figured this brew might get better with age, but after drinking one the other night…I am not so sure.  The movers were done by 2:00 PM. 

Jackson was over at Sara’s parents and they were going to bring him over after the movers were done.  Cray was going to come over after work to watch him for a little while we unpacked some boxes.   In-between the exchange I put together our canopy by request from Sara.  I was just about finished when everyone showed up.  Then I worked moving some furniture in the living room and safely securing the TV to the wall.  Sara worked on unpacking the kitchen.  We had some boxes that ended up in wrong places, but overall it was well worth having the movers do it. Sara’s parents said we could bring Jackson over later that night and he could stay with them giving us a few more hours at night to get more stuff completed.  We dropped Jackson off and picked up the dogs from the old house.   We set up Jackson’s big boy bed to which I am happy to report that he has successfully slept several nights in since the move.   We bought a video monitor to make it easier on us in fear of him having a seizure in his sleep.  We unpacked more boxes until late at night before calling it a day. 

The dogs were nervous all night and it has been hard getting used to not being able to let the dogs out the back since there is no fence.   Jackson loves walking the dogs.  He doesn't hold a leash, but he will hold your hand.   He will laugh at them when they get tangled up and then holler at them when they go the wrong way.  It is so cute, but very hard to clean up doggies messes when you have the two of them and Jackson in tote.   So far all the neighbors have been very welcoming.  The neighbors behind us moved in the same day.  Sara has met most of the neighbors when walking with Jackson.  Box by box are getting there.  Sunday evening we had my nephew’s birthday.  Afterwards Sara wasn't feeling very well and then ended up with the stomach flu causing her to miss a day at work.  Both our dad came over on Monday to help with some minor repairs, like hooking up the drain line to the dishwasher, fixing the drain pipe for the clothing wash machine, and the outlet to the microwave was loose.  We did not get to unpack very many boxes throughout the work week. 

Friday I left town, Danville, IL., for work and Jackson started a new patch with a higher dose of Clonidine to help him with the aggressive impulsive behaviors.  Since work went well Friday night, I drove back home on Saturday to help get things done.  As for Jackson’s medicine, the new patch caused Jackson to sleep for 3 solid days.  The last time Jackson had sleep patterns on a medicine like this, he had a seizure so he slept in bed with Sara while I was gone.  Sunday we went to the old house to grab window coverings and the storage space to remove the rest of the items and turn in the keys.  Jackson was like a zombie the entire time.  I felt very winded and tired, figured it was from the driving.  We ate some lunch and I took Jackson up for a nap.  Sara’s dad was going to come over to help hang window rods later that afternoon.  I abruptly woke up in the middle of the nap with the stomach virus Sara had the weekend before.  Terrible timing as I was supposed to leave and head back to Danville.  Luckily one of my work teammates was able to cover for me and my management was empathetic to my needs.  I got some rest and had to return the rental car Monday afternoon.  The drive into the city did not go very well as I was not completely better.  When I got back home I rested some more.  I still don’t feel 100%, but I am eating again.  We removed Jackson’s patch Sunday afternoon because we were in fear of a seizure and school in the morning.  Jackson is back to his bubbly higher self now.  If only we can find a middle ground with this medicine.  Dr. EBK suggested we try a patch and a half that has worked with other kids who were on the smaller dose and had the same sleepy reaction to the larger dose.  She just said she can’t guarantee the amount of medicine distributed in the half patch, but we can give it I try.

Last night we ran up to Lowes and bought some hardware to hang up Jackson’s IKEA hug swing.  On our way home there was a beautiful full Rainbow that looked like it was located directly over our house to welcome us home.  By the time we got home it had faded a lot, but you could see it perfectly from our driveway.  I was able to get Jackson’s swing hung up and even watched Parenthood which was an awesome episode.   “Vote for Max the (braver) MAN”.  This is show is so awesome how it deals with day to day struggles.  I could easily write a review/blog on every episode.  It is a must see TV show in my opinion.  Jackson was asleep before I could have him test his new swing.  We put Jackson back in his big boy bed, but had a very rough night staying sleep between 1 – 4 AM.   Now I am back to feeling like a zombie… LOL!  Oh and did I mention the big orange cable that Charter ran over a week ago is still not buried?