R-Word Campaign

I know it’s been a little while, but I was waiting for the month of March to end so I could tell you all about everything at one time.

As many of you know, I am the NJHS Advisor at the middle school. Our middle school started a campaign last year called Check it at the Door. It is a campaign where we teach and model to students about leaving all prejudices, bullying, etc. outside the school building. NJHS had the month of March and we focused on the R-Word Campaign.

We started off our campaign by having a school wide assembly. I introduced myself and spoke about the girls. Some of my NJHS members introduced students in our school that have various disabilities. The point was to show the students that even though they may look different or need different things to get by in life, they are still interested in many of the same sports, music, hobbies, etc. We also had a guest speaker! His name was Shane. He is a Special Olympic Athlete and attends a high school at one of our neighboring counties. He spoke about the sports he plays and the Olympic medals he has won. Then, he spoke about what the r-word means to him. We wanted to show the student body that everyone should be treated equally and just as nicely as the next person. This may only be my 5^th year teaching middle school, but that assembly was the BEST assembly I have ever been to. I have never heard those kids so quiet and responding so well at appropriate times.

During the rest of the week, my NJHS students set up in the cafeteria during lunch shifts and asked students to sign the banner to pledge to “Spread the Word to End the Word.” When students signed the banner, they received a wonderful bracelet to show their support and share their accomplishment with others.

The rest of the month consisted of little ideas, such as passing out yellow and blue pencils on World Down Syndrome Day, wearing crazy socks on World Down Syndrome Day, and conducting a door decorating contest for those teachers/classes that chose to participate. There was no prize, just a ribbon that would be taped to the door. It was the support and creativity that mattered. Everyone who participated did a wonderful job and I hope they choose to do it again next year! J

At the end of the month, I received word from the contact that Brandon uses that there may be some extra money that we can use to make the middle school a Project Unified School. J I am so excited to say that we have decided to take on this endeavor and are working up a plan to turn in to see if we can get the equipment we need. J We are hoping to start this in the Fall. 

Trisomy Twenty What!?

The science geek in me wants to take today, World Down Syndrome Day, to explain what Trisomy 21 is and how it happens.

To begin, our sex cells (egg & sperm) go through a process called Meiosis. This is how they "reproduce." During meiosis, the number of chromosomes is cut in half (Chromosomes carry our DNA from parent to child.). This happens so a baby gets half its chromosomes from mom and half from dad. An egg cell has 23 chromosomes and a sperm cell has 23 chromosomes. 

Men produce sperm throughout their lifetime. Women are born with all the eggs they will produce. At times, when an egg goes through Meiosis, the chromosomes don't split correctly and an egg will end with 24 chromosomes rather than 23. Some scientists say the eggs are "old," because they have been "alive" for how ever many years the woman has been alive. When this particular egg becomes fertilized by sperm, the embryo will end up with 47 chromosomes. Humans have 46 chromosomes. 

Shortly after the girls were born, I read books and articles about Down Syndrome, to see if I could learn more about it and how to better Lorelei's future. For about the first month, I felt like it was my fault because my eggs were "old." Why!? I was only 27! I just didn't understand. It's truly amazing how the human body works, so why would an egg that was so young not do its job correctly? I now know better, but it took me a while to accept it. 

Back to the science...

These 46 chromosomes are split into 23 pair.

For Down Syndrome to occur, the egg that is fertilized will have 24 chromosomes and the sperm will have 23. There will be 3 chromosomes on #21, hence Trisomy 21.

Just as with anything else, Down Syndrome has a spectrum. Individuals will be affected differently and will all be different from each other. Individuals with DS are not cookie cutter, just as typical individuals are not cookie cutter. It is all a learning process and we are doing it together!

I hope you enjoyed the science lesson! :)

We hope you "Rocked Your Socks" and had a wonderful World Down Syndrome Day!

Mission Possible

We returned from a WONDERFUL cruise a few weeks ago.

 It was the Mission Possible Down syndrome Conference, and it just happened to be on a cruise ship! J It was a little hectic at times with the girls, but it was a great experience and we all had a good time. We got so much information that we had never even heard of and are still in the process of sifting through it. Most of the information was about the CMF Protocol and Neurodevelopment.

The CMF Protocol is a list of vitamins and medicines that have been studied and analyzed and used to help children with Down syndrome. Here is the link to the Protocol: 

http://changingmindsfoundation.org/documents/links.html.  

Brandon and I were a little shocked that we hadn’t heard of ANY of this from our friends or from anyone in the Down syndrome Association of Northern Virginia. We haven’t really sat down and discussed what we want to try, if anything, but Brandon did speak to our pediatrician yesterday when he took the girls and he gave us his opinion on all of them. Most of the vitamins he said would be no problem to try. As far the Prozac, he says we need to talk to Dr. Anderson at the Down syndrome clinic to get her opinion and thoughts about the process. Also, the Focalin XR would only be used if Lorelei were diagnosed with ADHD.  The use of these vitamins and medicines are said to increase the neural connections in the brain. In other words, it helps children to remember what they have learned and continue to use it and increase the complexity of the skill as they practice.

The Prozac seemed to be the most controversial. There has only been 3 studies done with the Prozac and they were all done on mice. They were all successful studies, but they were mice… Here are some links to the articles of the studies that have been done:

http://www.jneurosci.org/content/30/26/8769.full

http://www.ncbi.nlm.nih.gov/pubmed/16624293?ordinalpos=1

http://www.ncbi.nlm.nih.gov/pubmed/20592198

http://www.changingmindsfoundation.org/documents/prozac.html

I found this reaction to the CMF Protocol while conducting some research:

http://www.down-syndrome.org/statements/2106/?page=1

Brandon and I kind of fall between the let’s try it and why do we need to? We understand that people want their children to be “normal,” but shouldn’t society learn to accept everyone for the differences? Why do we need to make our children “fit” in with everyone else? I think this was the only issue Brandon and I really had with the conference. It seemed that a lot of the families are out to make their children “normal,” to fit in with everyone around them. Yes, we all want our children to be successful, but there is nowhere that says they have to be the same as everyone else. Some of the speakers referred to “our children with Down syndrome need…” Yes, they all have Down syndrome, but just like typical children, they are all DIFFERENT. My child may not need the same thing your child does.

It seemed from talking and reading other’s blogs when we returned from the trip, that a lot of these families did not have good experiences with Early Intervention. We have had a GREAT experience and Lorelei has excelled so much because of this. Due to the bad experiences, many families turned to Neurodevelopment. Here is a website that discusses the background and gist of neurodevelopment:

http://www.nature.com/news/neurodevelopment-unlocking-the-brain-1.10925

For the most part, it is being said that physical therapy and occupational therapy is not done correctly for children with Down syndrome. With the low muscle tone, these children are to do things a little differently in order to develop the muscles correctly. Read the website above for full information about the process! It’s rather interesting, but we aren’t sure if we agree with all of it.  Here are some other resources:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1367862/

http://www.neurodevelopmentcenter.com/

As of right now, we are sticking with our Early Intervention team. Lorelei is doing fantastic! We hope to start speech therapy soon and get that going. J

We would love to hear your feedback on these new pieces of information that we learned. We will continue talking and working with our doctors to get their input and thoughts.

On a side note: Lorelei does NOT have a food allergy!! J Her cheeks are just extremely dry and we have to constantly put Vaseline on them to help.

Project Unify

     During the spring of 2012 Maria came across an inspirationalarticle through our local Down Syndrome group .  It told the story of a set of triplets in Maryland.  At their high school they offered Unified Sports.  More specifically the brothers were able to compete together in Unified Bocce Ball during the winter season.  

     This gave Maria and I’s our first idea of how we could make a difference in our school system.  I went through several chains of contacts to find out more information before approaching the administration.  I called Frederick High School’s athletic director, then the Special Olympics rep for their area in Maryland. I was then passed to the Special Olympics rep for our area.  Next I went to our athletic director with the information I had come across.

     He loved the idea.  His own son had competed in the Special Olympics so he was very interested in the idea of including Unified Sports in the high school.  Our first goal was to pick a sport that would allow for great variances in ability.  We decided upon bowling.  By using the bumpers and ramps for those that needed them, ever athlete was able to experience success at some level.  The biggest problem that we ran into was trying to get partner athletes out for the sport.  We tapped into our bowling club here at the high school and they helped tremendously.  

     The experience was an interesting one in the beginning.  We had to help the partner athletes understand that they didn’t need to baby any of our athletes with challenges.  The partners weren’t there to “help” in the traditional sense of the word.  We wanted them to work together and to become peers.  By the end of the season everyone was working well together and you could see the friendships that had formed. 

     Our most recent sport is Bocce Ball and Cornhole.  We began this sport last week and are still hurting for partner athletes.  There is a core group of students that want to participate in Unified Sports but they are always in season for other sports.  This causes a conflict with schedules.  The season has begun well and the students love working together. 

    My next goal is to expand our program to other local high schools.  I would also like to get our high school more recognition in the local media for leading the way with this new program.

Game Shirts

Game for Respect

     The awareness week in October was finished off with a football game.   Here we took donations for a local organization which helps to provide job opportunities for people with intellectual or physical challenges.  We wanted the money to go somewhere local and make an immediate impact in our community.     
     I was able to get the game mentioned in the newspaper, it was in the community calendar,  it was even mentioned on the local high school football show.  The game we picked ended up being for a district championship as well.  This made us all excited about the huge crowd that would show up.    
  
     There were a few volunteers that sold t’shirts, had people sign the banner, and took donations.  My parents were even among this group.  Unfortunately we fell short of my donation goal.  I was hoping for over $1,000 but only raised about $400.           The reason was mainly on my shoulders. I was not aware of the toll that this event would take on me.  Trying to plan everything out on my own was not the best thing for my stress levels.  For those of you that know me, you know how high strung I am at all times.  You should be able to imagine how this event was.  I should have asked for more help from the beginning.  In my drive to make a difference I forgot that things are much easier when you ask for help.  I was actually coaching during the game so no matter what I planned beforehand I was useless during the event.  I guess I was under the idea that things would just magically work out.  I felt that everyone would feel strongly about our cause and come running to donate.  I’m not sure if it wasn’t placed properly around the field, if we didn’t give enough information, or just poor planning all around.    
   Let’s just say that next year Maria and other teachers will be in charge of a lot more. 

     As mentioned in the post a few days ago, we had a lot going on this past fall.  I had football season going on, organizing and running the R-Word campaign, organizing and running the Game for Respect, a few public speaking events, and organizing our first Project Unify season.  During all this I was leaving Maria to almost act as a single parent.  Any football coach, wife to a coach, or family member of a coach knows the time that goes into the season.  While at school I would plan these events (during my planning period only) then go to practice.  I usually made it home in time to read the girls a bedtime story.  My “early” Thursdays were nice because I also got to help with baths.  Maria is an amazing woman for all that she puts up with and does every day.  But I notice it and realize how lucky I am a little bit more during football season.  

     

Public Speaking

Speaking

     Along with the awareness week I gave a 30 minute talk during the school day.  I spoke with 8^th, 9^th, then 10^th graders.  Our administration is understandably against whole school assemblies.  Needless to say I was nervous on Monday about what I would say and how it would go. 

     This was going to be the largest group of people I have ever spoken in front of and this time I was speaking about something very personal.  I talked about Lorelei, her experiences, and our expectations.  The session was led off by showing an r-word video produced by Special Olympics Virginia.  I then explained how fortunate our daughter is.  They were astonished when I gave the statistic that 93% of fetuses are aborted if they test positive for Down Syndrome.  Even now this stat is amazing to comprehend.  I then told of Lorelei’s surgeries and struggles.  But I was never far off from mentioning her successes and how well she is doing. 

     She would always finish the show for me by strutting her stuff onto the stage so I could hold her in my arms and wave hello.  I left each group with a final thought that Lorelei, or any other person, is not defined by having Down Syndrome.  After all it is something that she has.  It is not who she is.  I also wanted them to not feel bad for someone with Down Syndrome nor for Maria and I.  I wanted them to understand that she was just like them, a child growing up and learning as she goes.  It just may take her a little bit longer to learn it.

   The sessions went better and better each time.  I got more confidence and things flowed easier.  By the end of the week the administration commented that they felt it was the best and most informative sessions the students had gone to in a while.  They were even impressed at how well the students acted during the session.  This made me feel even better about it. 

     Maria will be speaking to the middle school during their awareness week and r-word campaign on March 5th.  It’ll be a younger crowd but we expect them to do just as well with the cause. 

Here are some pictures of the banners that the we and the students signed.

Both Banners

First Banner

 Second Banner

   

Next up: Game for Respect

The awareness week was finished off with a football game where we took donations for a local organization.  This organization helps provide job opportunities for people with intellectual or physical challenges.  Tomorrow I’ll let you know how that went.  

New Ideas

     This fall began a mission of Maria and I’s.  By no means is this mission our own idea nor are we leading the way. We are simply following examples set forth by other people.

     In October the high school that I work for held an awareness week for people with disabilities and a fundraiser football game that we called The Game for Respect. We also began a program called Project Unify at the high school. The middle school which Maria works at is also holding an awareness week this spring. R-Word The awareness weeks were ideas that we got from a campaign called “Spread the Word to End the Word”. I contacted our local Special Olympics representative to see how we could work together. I threw out the idea of having students sign a banner and take the pledge to stop using the “r-word”. For those that may not know we are talking about the word “retard” or “retarded”. They loved this idea so much they were willing to buy and send me 700 wristbands to give to the students when they signed the banner. So this whole campaign was completely free to myself and the school. Anyone that works in a public school system knows that free makes things A LOT easier to get accomplished.

     The week went well. I had volunteers from my Wildcat Buddies help to inform students about the banner and what it meant. The guidance department even gave me a list of all the students in the school. As students came to sign the banner they had to give us their name and we would check them off, sign, and then hand over a bracelet. Our goal was to have the entire school sign the banner. Of course we had to go searching some students out. I even went and addressed some students directly if they were against signing the banner. I simply would ask what they were against and then explain what this pledge and this word meant to me, Lorelei, and some of their fellow students. Every student that I spoke with saw that our cause was justified. We finished with only about 30 of the 750 students not signing the banner. It was a great accomplishment for our first go around. We are hoping the middle school has similar success.

Speaking
     Along with the awareness week I gave a 30 minute talk during the school day. I spoke with 8th, 9th, then 10th graders seperately. Our administration is understandably against whole school assemblies. Needless to say I was nervous on Monday about what I would say and how it would go...

 To be continued ...

Well Hello There

So … apparently Maria and I have discovered that we are not destined to be professional bloggers.  Our last post was all the way back in July just as football season was fast approaching.  To catch everyone up on recent events, and some not so recent, I plan on creating several posts hitting different topics from the past months.  

To get started I’ll mention our last visit to UVA.

Back on January 25^th we took Lorelei to the Kluge Center down at UVA for her meeting with Dr. Anderson.  Lorelei took a few moments to get warmed up but then performed excellent.  Our fear was that she was doing these wonderful things at home like climbing on EVERYTHING and communicating through signing but would be too shy and not show this to the doctor.  There was no disappointment on this day.  She did very well as the doctor would pull animals out of the barn and Lorelei would sign many of them.  Ofcourse she would go with “dog” on anything she wasn’t sure of but would soon hit the correct sing if she heard the word.  After about an hour with Dr. Anderson she told us that Lorelei was doing wonderful and to begin working on coordinating different ideas such as what animals say. 

Lorelei’s eyesight is also the next big step.  We are hoping to get her vision checked soon so to be sure she isn’t having troubles.  Nothing has really seemed apparent but we are just trying to be proactive. 

Let me add in the finish that Lorelei’s ability to do the things she can has been nothing but amazing to us.  She works so hard and wouldn’t be where she is without the great example set by Mikaela, the hard work and love of Maria, and the dedication and caring that Bethany has shown our two angels.  I can’t thank all of you enough.