Where have I been ….

So no…I did not fall off the planet and everyone in the family is doing really well.  I am sorry to disappoint my loyal followers; I didn't realize how many of you look forward to reading about us.  It blows me away when I see you in person and you mention our blog.  I am not an excuse person, or try not to be, but honestly I have been so extremely busy. Besides business of life I have been working a lot of extra overtime.  Our company is upgrading to Windows 7 and I am one of the leads from my team on this huge project.  I made many attempts to write between the last time I wrote and now, but never got to complete those entries.  I looked back as my last few blog posts and couldn't believe how long it had been since I last wrote.  Obviously so much has happened since.  I will give you some snip-its and try not to be long winded…  Ha…ya right, LOL!

Pumpkin 2012

October: We survived the move from High Ridge to Ballwin. We are still hanging pictures on the walls and getting ready for our favorite holiday, Halloween, which is also Sara’s birthday.  Growing up my family always went above and beyond for Halloween. Really it was a time for my dad to be a big kid; he really enjoys celebrating this holiday.  So when I met Sara and found her birthday was on Halloween it was perfect.  We have new and old traditions we both have brought into our family and the most important being one upping the year before costume is in full affect.  When Sara was pregnant with Jackson we dressed up as Juno and Paulie Bleaker. Jackson’s first Halloween we dressed as a skeleton family and we only took Jackson to a few houses.  I made my famous Jack Daniels chili and Sara’s parents came over to celebrate and give out candy.  I set up the fire pit to keep us warm. Chili and fire pits were something my family did every year. Jackson’s second Halloween we dressed a family of vampires and for his third we dressed as a family of pirates.  Jackson usually only makes it to about 5 houses before he is done with the trick or treating.  The first year we took him it was hard for us because I think we both wanted him to be really into it.  Either way, we keep on trying.  This year I loved our theme, Sara was a sunburned tourist, Jackson was a Shark, and I was deep sea diver photographer.  This year was also special because we had just moved into our new house.  Jackson helped us carve the pumpkins; he seemed to enjoy pulling out guts.  We also went to a Halloween party at Sara’s work where Jackson showed off for Miss Jen.   On Halloween it was go time as soon as I got home from work. I pulled the fire pit out front before dark, made the chili, and we all got ready to go trick or treating.  We took Jackson to the houses around our culdesac.  Meeting our new neighbors and working with Jackson on taking 1 piece of candy and not dumping the bowl out people’s hands.  Sara explained Fragile X to all our neighbors.  We figured we would just hit our circle and Jackson would be over it, I would start the fire pit and we would give out our treats, but Jackson completely surprised us.  He loved going from house to house, saying hi to everyone and signing thank you as we left.  He also wanted to make himself at home at each house we went to which the neighbors thought was so cute.  It was so much fun and he did so well.  Sara’s dad stayed behind giving out candy at our house and when we returned we still had two full bowls of candy and treats.  We had noticed when we were out that there weren't very many other children out and about.  After we were home there were only 2 more trick-or-treaters and by they were teenagers.  I didn't even get a chance to start the fire before the night ended.  It was great night and I was so proud at how well Jackson did.  By the way it is now May and we still have a bowl full of candy, please stop by in your costume any time for a treat…

My little carver helper

Halloween 2012

November: The month of Thanks!  I traveled back to back weekends for work so Sara had to take care of all our family stuff solo.  We still have our other house on market and there was a lot Sara had to do with that house.  She also organized a panting parting at our new house and half our basement is finished.  Yay!  One of the weekends I was gone Sara found that our house on the market was broken into and they took call the copper piping and the AC unit. No so yay…  Slowly we getting more pictures hung up on the walls in the new house.  Jackson started at his new school and everything is going really well there.  I didn't get to participate in his IEP review, but Parkway was as shocked with the lack of services that were written in his IEP from Northwest.  The most important thing Parkway did was add an hour of speech week on top of his 30 minutes of language.  Northwest argued with us when we asked for speech because Jackson didn't make 3 of the 5 required sounds. Um, hello…he is non-verbal…required sounds to qualify for speech….I know you are shaking your head with me here.  Sorry….side tracked on the negative, back to the positive because it is the month of Thanks.  Jackson’s speech is coming along wonderfully.  He is learning the sounds of all the letters of the alphabet and knows a couple letters by sight.  I am so proud of him. 

We decided to host Thanksgiving at our house and bring both our families together under one roof.  The Tuesday before Jackson had a seizure. We finally had our follow up visit with the neurologist a few weeks prior to this episode; follow up from the February big seizure ICU visit. We developed a seizure action plan in which if the emergency medicine brings him out of the seizure and he doesn't have any more that day, then we do not need to head up to the hospital or emergency room, but keep him home from school, keep his activity level low, and don’t leave him unattended.  I was at work when the seizure happened, so Sara had to take care of everything solo.  Jackson had a rough night sleeping and to be honest I was really worried he might have one.  When we saw EBK in the spring she said erratic sleep patterns could trigger a seizure.  When Sara and Jackson woke up, she said he was not himself.  When Sara tried to give him his medicine, he fought it a bit then after one bite threw up, shortly after had his seizure.  Sara administered his emergency medicine and called me while he was coming out of it.  I hated not being there for that.  Sara called into work and Jackson stayed home from school.  He got a lot of rest and by the time I got home from work he was more his high energetic self. 

We discussed it thoroughly and decided to still host Thanksgiving.  The night before I smoked a turkey breast and on the day off baked a traditional turkey.  Everyone else brought the rest of the feast.  We had yummy h’orderves, a wonderful dinner, and delicious deserts.  Jackson had a blast playing with his cousins, and Auntie Tricia. Having his trampoline and swing available is helpful keeping the hair pulling down in numbers.  It was so wonderful to have everyone together and it was great to actually have enough room to host.  I am so grateful for having such a loving, fun family on both sides.  We were told at the end of the day that we are hosting Thanksgiving from now on.

Maple glazed smoked Turkey

Tradition bake Turkey

To be continued….

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: http://www.youtube.com/watch?v=DG3RPdkjnFE.  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."  http://www.cnn.com/2012/10/23/living/ann-coulter-obama-tweet/index.html

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."  http://www.huffingtonpost.com/2012/10/23/ann-coulter-obama-retard_n_2004828.html?utm_hp_ref=media

How does this make me feel?

Disgusted!

Outraged!

Sickened!

Disrespected!

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: http://specialolympicsblog.wordpress.com/2012/10/23/an-open-letter-to-ann-coulter/

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...  http://www.r-word.org/”

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 my 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.  

I think 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: http://www.allparenting.com/my-family/articles/965679/child-with-down-syndrome-using-word-retarded

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. http://www.r-word.org

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.