Just curious

Do you BBQ, grill out, or cook out?

When I was in California, we BBQ'd. Here, in North Carolina, it's cooking out. I read the other day that people in the middle say grilling out. So, just curious- what do YOU say when you cook bbq (hamburgers/hot dogs) on the grill? :-)

Can you see it?

Ok, don't mind the crazy hair...it was really windy! This is another picture that Bethany took. No edits here. Minus that hair, I love this shot. I see happiness. I see love. I see determination. I see joy. Can you see it?

SPREAD THE WORD!

It is time to “Spread the Word to End the Word,” and tomorrow, 31 March, events throughout the United States and around the world will make people stop and think about their hurtful and disparaging use of the word “retard.”

Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual disabilities, their families and friends. Using "retard" as a term of derision is just as cruel and offensive as any other slur.

What It's All About
Spread the Word to End the Word will raise the consciousness of society about the dehumanizing and hurtful effects of the R-word and encourage people to pledge to stop using it. America will be asked to declare their support for more respectful and inclusive language, specifically that referring to those with intellectual disabilities.

"The earlier we can start teaching this awareness, the easier it will be to reverse the language, " wrote James Saetern of Sacramento, California, in an e-mail to Special Olympics. "This is not just a day of awareness, but a movement to end hate as a whole."

Ideas are pouring in. To date, we have heard of more than 700 events and activities happening throughout the United States – and around the world. They range from tables set up in malls, to grade-school assemblies on differences to all-day kiosks and movies at college campuses. The commitment and creativity are growing. Below is a sampling of events planned for tomorrow:

• Spread the Word to End the Word online youth rally
  Live stream at www.schooltube.com, 12:35 PM Eastern Time.
  The 50-minute rally will feature actor Eddie Barbanell from the hit movie “The Ringer,” Special Olympics athletes and volunteers, and original music performed by rap artist Rush. Also on the program are original videos produced by young people. High school students across the country will be asked to take the pledge to stop using the “R” word and to help raise awareness among their friends. The rally is being produced by Miami Palmetto Senior High School 11th-grader Noah Gray, Special Olympics Florida and SchoolTube.
• Take The R-word Pledge Rallies
• American University, Beirut, Lebanon
  Soeren Palumbo's R-word speech played hourly; movie at 6 p.m., "The Loretta Claiborne Story"; posters, pictures, online R-word signups.
• All high schools in Delaware, USA
  All 40,000 students will be asked to sign pledge boards in their schools.
• Tower Hill School, Newark, NJ, USA
  Spread the Word day as culmination of a week of exploring disabilities
• Fort Worth Independent School District, Fort Worth, TX, USA, all day
  Lunch-time rallies, video shows, student testimonials and R-word pledge boards
• University of Kansas, Lawrence, KS, USA, all day in high traffic areas
  Sign pledge boards, visit www.r-word.org, get information.
• Western Michigan University, Kalamazoo, MI, USA, 8 a.m. to 6 p.m. in five campus locations
  See posters, sign pledge boards, talk with committed volunteers and Special Olympics athletes.
• University of Nebraska, Lincoln, NE, USA, all day in student union
  Sign the pledge board, talk about why you support the campaign, get stickers, buttons and bracelets
• Princeton University, Princeton, NJ, USA, all day on campus
  Sign the R-word pledge, see big-screen displays of Special Olympics and R-word videos.
• Slippery Rock University, Slippery Rock, PA, USA, all day on campus
  Sign pledge boards, get buttons, bracelets and stickers for free, buy T-shirts

How It Started
Created by young people with and without intellectual disabilities, Spread the Word to End the Word is one element of Special Olympics’ vision of a world where everyone matters, where everyone is accepted and, most importantly, where everyone is valued. Leading the way in promoting acceptance of people with intellectual disabilities, Special Olympics opposes prejudice and discrimination, continuously working to dispel the negative stereotypes associated with this population — the use of the R-word being one such stereotype. In a world that has worked to eliminate pejorative racial and ethnic language such as the “N word,” among others, the R-word is gaining popularity.

Tomorrow, young people across the country will lead local efforts to raise awareness and collect pledges on www.r-word.org from peers and the community to vow not to use the R-word. Actor and activist John C. McGinley, of the hit show “Scrubs,” is helping with this effort by making national media appearances on behalf of the campaign.

What YOU Can Do

• Send us your plans to Spread the Word at r-word@specialolympics.org.
• Take the R-word pledge to not use the word "retard" as a put-down
• Download Spread the Word to End the Word resources

After 31 March, let us know how your Spread the Word event went. Send a report, photos and videos to r-word@specialolympics.org

MRSA

*Disclaimer: This is nasty*

If you have talked to me over the past week, then you know about the pimple/ingrown hair gone terribly wrong that was on my forehead, right in my hairline. Well, after messing with it, that darn thing continued to grow, get harder, and it became more and more painful. I saw that my entire forehead was getting swollen and "squishy". I even sterilized a needle and tried to take matters into my own hands...no luck.

I finally went to the doctor who proceeded to congratulate me on making it worse by poking at it (oops). He mentioned staph, gave me two antibiotics, said to put warm compresses on it, and to get some rest. I was to come back two days later to have it opened and drained (Hey now, I disclaimed that this was nasty!).

Two days did not come quick enough! The first night after the warm compresses, I woke up looking like I went a round with Rocky. My eye was so swollen on the upper lid. Day two arrives and now my lower lid is swollen. The warm compresses were basically moving all of the infection to one place and I guess it stopped for vacay in my eye along the way.

I dropped Ethan off at school and immediately went to the doctor. Doctor comes in and proceeds to say that he "doesn't feel comfortable opening up my forehead because of all of the nerves". You have got to be FREAKIN' kidding me!!! He referred me to my ENT to have it taken care of. THANK GOD that I am friends with my ENT. He is just flat out awesome!

ENT tells me that he has seen LOTS of these cases over the past couple months. Who knows how I got it- could have been from the hospital, could have been from a grocery cart...whatever. I am moved to the "surgical room" and he shoots up my little gumball of pain with some Novacaine. Lord have mercy on me if I hadn't had that shot, because I was about ready to pass out from the pain WITH that dang shot.

Lots of pus & blood ooze later, I feel as if I just gave birth out of my head. I kid you not. That was some crazy stuff! Dr. says that he would be surprised if it was not MRSA and sends off a sample of ooze to the lab.

It was confirmed today that it was indeed MRSA. BUT, since the gumball is now down to a skittle and the sore is not open any longer, I am not at a high risk of passing anything on. There are still precautions, of course, but doctor reassures me that all will be fine and that those that I come in contact with will be fine.

All of this happens to the person who uses antibacterial all the time and even carries a pocket size one. Go figure.

Another Fight

Yesterday, the news was broke to me that Ethan's classroom will close at the end of the year. Ethan will be forced to attend another school. I have been crying since I found out. I spoke with the principal today and she told me that "It wasn't over, we're still fighting". So, I know that I have her on my side, but really if the EC department made the decision without even consulting with Dr. A, then why would they care how she feels?

Our background: Ethan is in a self-contained severe & profound class. There are currently 3 students in there. 1 teacher, 1 asst. teacher. People may say that it's a class with ONLY 3 kids, it can't stay open. I get that budgets are getting cut left and right, but the teachers are guaranteed a job, so they aren't saving money on salary.

I just wrote that article for NDSC and made a copy for some of the students. I had multiple people come up to me last night and today thanking me for the article and for everything Ethan brings to their classes. You see, it's not just about 3 students. This is about the entire school! Ethan's teacher has implemented a great EC program at school where the typical classes get to know the EC classes and get to learn. They are learning acceptance among differences. The parents thank me for teaching their kids.

I am so sick. I went to the school that I think they will place Ethan at. It's a nice school, don't get me wrong, but it is nothing like where we are. His class would be on the 4th/5th grade hall with the only other interaction with typical peers would be during specials or recess- or unless the IEP states that he has to be mainstreamed for a certain amount of time. The classroom doesn't have carpet! Don't ask me why that means so much to me, but it completely grosses me out that there is no carpet in the classroom.

And, the kicker...as the tour was almost over, the lady says "we don't need to go down that hall because it's just for regular kids anyway". I do believe that I about lost it.

I will be raising holy heck about this. I may be the only one and it may not do a thing, but I promised to fight for Ethan. I have already had multiple faculty members say that they will write letters and attend a board hearing with me if needed.

My question to you is: What would you do? I need extra ideas. My head is so foggy. Pass this on to whomever you can- I need backup.

I just feel that when EC made this choice, they basically said "your child isn't worth it". That just will not sit easy with this Mama Bear!

He’s gone National

If you are a member of the National Down Syndrome Congress, then you will be receiving the Spring Edition of Down Syndrome News (DSN) with my Bubba’s gracing the cover!  Not a member?  Sucks for you!  :-)~

When Ethan and I went to visit our friend, Bethany and family, we went out on a trail to take some pictures of Ethan walking.  It was very cold and we were not out long, but Bethany captured this beautiful shot that still makes me tear up when I see it.  I know that I have posted about it before, but I really think that he appears to be crossing the finish line of a marathon.  How appropriate.  Ethan has definitely been running marathon after marathon with everything he has been faced with.  The picture captured a moment- there he was standing tall, hands up in the air, smiling as he walked to me- happy as could be. 

This one picture inspired me to write an article.  I contacted Julie, the DSN editor and told her that I would love to write an article about Ethan’s accomplishments.  Most stories that you read about people with Down syndrome are all happy-go-lucky stories, which I think are GREAT!  Don’t get me wrong, but there is also the reality out there that not all of us have THAT story.  Some of us keep our stories and challenges private or feel that we don’t belong because we walk that fine line of needing support and possibly scaring a new parent who either just found out there child would have Ds prenatally or is just receiving the news postpartum. 

My point of the article was that Ethan IS a success story!  He IS a superstar!  He HAS touched many lives- more than I even know about!  We should ALL be supporting each other, regardless of “function” and we should ALL be proud, because God does NOT make mistakes and my son is proof of that.

Dreams

The past few nights, I have had the most random, vivid dreams.  One that I remember as if it really happened was the other night.  I dreamt that I was driving through town in Mariposa and saw Melanie Wilbourn drive by.  Melanie and I grew up together and I haven’t talked to her in, shoot, over 7 years.  I believe that I was pregnant the last time I talked with her, so I guess that makes it more like 8 years.  I think of her often and wonder how she is, but she is not on Facebook or Myspace (that I know of).  Mel is very talented and artistic with music- I always wonder if she is still writing/performing (so, if anyone knows how/where she is, please let me know!  I would love to get back in touch!).  Anywho- as soon as I saw her driving, I went to follow her.  She pulls into the Happy Burger (ok, now only Mariposan’s know what I am talking about now!) and all of a sudden, there are a whole bunch of other people that I grew up with but haven’t see or talked to in forever.  After talking to all of them for a while, the dream skips to me having an intense conversation with my neighbors.  What does it all mean?  Who knows.  I guess it’s just me being me…random.

Thank you, Sarah Palin for your support!

Dear Mr. President...

You're an ASS!

Apparently, Mr. Obama thinks it's funny to discredit the achievements of those who participate in the Special Olympics! The entire article is not about SO, but about the economy and the bonuses paid out to AIG peeps with bailout money. Beyond the bailout convo, I am beyond pissed off that our Nation's President would say something so classless, disrespectful, and offensive!

President Obama sat down with Jay Leno on Thursday for a late-night TV interview that spanned a range of topics -- from the economic crisis to the presidential dog -- and even, at one point, featured the president joking that his bowling ability was suitable for the Special Olympics.

The bowling comment was a reminder of his poor performance on the lanes last year during one of his campaign stops. Obama bragged to "The Tonight Show" that he recently bowled 129 on the White House alley.

"It's like Special Olympics," he said.

I try my darndest to not get in the middle of political crap because, frankly, it puts me in a foul mood- just ask Scott, but this just has my blood boiling.

MY son participates in the SO games and, you know what? He's darn good at it! How dare Mr. Obama take such a wonderful event and tarnish it with such bigotry, lack of class, and negativity!

Lord forgive me as profanities fill my head...

Important Things with Demetri Martin

Scott told me about this comedian, Demetri Martin, a couple of weeks ago. I watched his show on Comedy Central and laughed so hard that I cried and could not stop! I have looked and looked for the actual clip that made me laugh so hard, but came up empty. The show comes on at 10:30pm Wednesday nights and I am just always so tired on Wednesdays that I have to find things to do in order to stay awake to watch! So, this is a clip from a scene on his show.

Important Things with Demetri MartinWed 10:30pm / 9:30c

Brains - Jokes About Brains

Joke of the Day
Stand-Up Comedy

Free Online Games
More Funny Videos

It's BOGO Time at Uppercase Living!!!

Just when you thought Buy One, Get One 1/2 Off was just for shoes!! Purchase any item from now through April 6th, 2009, and you'll get 1/2 Off any additional item of equal or lesser value!

Choose from any of our fabulous accessories, exclusive expressions, or even a MyDesign expression - there's no limit to the ways you can enhance your home, or the number of 1/2 Off items you can get!

This Promotion also qualifies at Open Houses! Host an Open House and your guests will also receive this Promotion!!!

Go to my online Uppercase Living site to start shopping!!! You can also e-mail me @ faulknerkd@gmail.com, or call (336) 782-0580 with any questions! ~Kristen

So much for a cute post...

The pictures from my previous post are all over the place! I tried to fix it and it just got worse. I am too tired to deal with it right now, but it has completely annoyed me. Here I try and post something nice for my sister and it looks like crud. Grrrrr...

Happy 23rd Birthday, Kamrin!!!

Today, my baby sister turns 23! I was able to be with her on her birthday last year and I feel so fortunate to have been able to be home during that time (Thank you Mommy & Jeff!!!). I found myself trying to find old pictures of me and Kamrin Drew. I have quite a bit, but the one here on the left was taken on the day that I was moving out- just after my 18th birthday. Kamrin had asked me to roll her hair up in curlers and then she proceeded to make her sad face because I was leaving. She was trying to use that face to make me stay. I am surprised I didn’t stay, actually. She was such a sweet little lady…

Kamrin has grown up to be just as lovely of a young woman.

Even though we are separated in age by over 9 years, we are incredibly close. I truly have a best friend in my sister and I hope that she knows that. I want to wish my sister, Kamrin, a VERY HAPPY BIRTHDAY!!!

I love you!!! And, I miss you every day!!!

Ethan loved having his Auntie Kamrin visit us in North Carolina and was sad to have to say goodbye!

Bring Kellsey Home Silent Auction

Our friends, Renee & Frank, are in the process of adopting a little girl from Eastern Europe who has Down syndrome! They are holding a silent aution on Kellsey's adoption blog, so click on the above picture to go check out all of the cool items!!! I, personally, think that Auction Item #30 is pretty amazing. ;-)

THANK YOU!!!

Gonna brag on my boy!!!

I don't know if it is the artificial colors that have been removed from Ethan's diet or if I am more aware of what I am doing for him sensory-wise, but he has had FABULOUS days since last Friday! He is my happy, happy, happy boy again! I am SO loving this!

AND, tonight I tried something new with feeding him dinner. I put him in his chair, lowered it so I could sit behind him, and then I gave him the spoon while I held the bowl. Now, lately he would have thrown the spoon and immediately gone for a hand shovel to the mouth, but today he took his spoon and scooped up his food!!! Oh.My.Gosh. We are thrilled!!! And to top it off, I was even able to gradually put the bowl on his tray and he did NOT throw it off!!! There weren't any crumbs on the floor either!

So let's recap: Ethan self-fed without any messes OR throwing of objects. We are over the moon! We also pray that it wasn't a fluke---LOL!

Beware!

These plaques come with a warning…

 

I meant to say, Olivia’s gravesite, but it’s permanent ink…what to do.  You get the point, right? 

Olivia's Plaques

I went to Cracker Barrel yesterday to see if they still had some of the "Make A Wish" and "Princess" plaques left. Thankfully, they had one "Make A Wish" left and a few "Princess" ones. I should be able to take them up to Olivia's this week. It still angers me to no end that someone would steal from a little girls grave- ANY grave for that matter, but I take comfort in knowing that I was able to replace the plaques.

JCM Rocks!

Sensory Processing Disorder

I went to a seminar on Wednesday with Ethan’s teacher, Mary.  The title of the seminar was “Strategies to Help Children with Sensory Processing Disorder”.  The two speakers were, Carol Kranowitz- author of  The Out-of-Sync Child, and Paula Aquilla, OT and co-author of Building Bridges Through Sensory Integration.

First of all, if you have a child with SPD and you do not have either of these books, I would recommend purchasing them!  I have already been able to learn so much!  I am, particularly, enjoying Building Bridges.  I love the checklist pages and activity samples given to try to work on.

We have known that Ethan has “sensory issues” for a while, but we just felt like we would try, try, try different suggestions without any luck.  Some of Ethan’s behaviors were appearing to be “mean”.  He was pinching or pulling hair and would not stop when told NO.  He would be having a great time playing with laughter and giggles and then, BAM, he would flip to be “mean”. 

When I told Ms. Aquilla this, she immediately asked me if Ethan has seizures. “ Ummmm, not that I am aware of”.  Ms. Aquilla is also studying neurology and proceeds to tell me that his behavior sounds like he is having sensory seizures.  She said that sensory seizures are not spoken of often because they are difficult to diagnose and they are not as obvious to others like say, a grand mal seizure.  We have a neurologist appointment on the 16th that took close to 9 months to get and I intend to discuss the possibility of sensory seizures with Ethan and if the lesions that were found on Ethan’s brain have any significance.  This should get interesting and I will be sure to update with a follow-up after the neuro appointment.

Back to the actual seminar- what wonderful speakers!  We were there for 9 hours, and that does not include my 5 hours of driving time to and from home, but it didn’t seem like it.  They both made such a complicated subject fun to learn about! 

There are different classifications within SPD:

Sensory Modulation Disorder/Sensory Over-Responsivity (SOR)

• Defensive Behavior
• Avoids sensation
• Most common SPD
• Most emotional
• Fast fight, flight, and/or fight response to cope
• Challenging, rigid
• Frequent Meltdowns

Sensory Under-Reponsivity (SUR)

• Requires intense input just to notice
• Disregards sensation; appears disengaged
• Safety issue; poor response to pain
• Slow responsiveness

Sensory Seeker (SS)

• Constantly seeking out sensation
• Bumper and crasher
• Safety concern
• Can be impulsive
• Seems more than even they can handle

Sensory Discrimination Disorder (SDD)

• Can’t differentiate between sensation; even between internal and external sensation
• May or may not co-exist with SMD

Sensory Based Motor Disorder (SBMD)

• Postural Disorder
• Difficulty with core strength, balance, bilateral co-ordination
• Low tone, easy fatigue
• Associated responses
• ‘leaner’

Sensory Based Motor Disorder (SBMD)

• Dyspraxia
• Clumsy, difficulty learning new movements
• Ideational, ideomotor challenges
• May prefer familiar tasks as new ones are so difficult to learn
• Behavior can be inflexible

Ethan can check off a number of these symptoms within the classifications!  Ms. Aquilla said that it is quite common for kids to cross over into other classifications.  I felt better about that, knowing that we aren’t the only ones!

We were working on a sensory diet (sample sensory diet here) already, but after attending this seminar, we are in SD overdrive!  Another thing that I am going to work on (PRAY FOR ME NOW!!!), is taking as much artificial color, especially reds, out of Ethan’s diet.   I know that Ethan is not going to be very happy with this since he LOVES his strawberry milk!  What we are going to try as a substitute is to puree some frozen/fresh strawberries and add that mixture to his milk instead.  Here’s to hoping it works!!!

The next project in line after removing artificial colors for a while is to go gluten-free.  YIKES!!!  Do you know how many foods have gluten in them?!?!?!  Especially the foods that Ethan LOVES!  I believe it was Ms. Kranowitz who mentioned that she once had a student who only ate 3 things and those 3 things were toxic to his system.  Artificial colors and gluten could very well be contributing to some of Ethan’s challenges.  We have to try this.  If it works, great!  If not, then at least we can say that we tried.

There are other things that we can do diet-wise, but I want to start with those two things.  I am thinking at least a month without AC first and then introduce GF- is that enough time to see a change?

I gained SO much information from this event.  I am a little overwhelmed by it all, but I see hope.  We are SO incredibly lucky to have Mary for our teacher!  She took the day off of work, unpaid thank you, to get more information on how she can help Ethan.  We all want to work as a team and be on the same page. 

This sensory business is NO JOKE and I hate it, but we do have a dim light in the distance at the end of a very long tunnel.  This is another battle that Ethan will fight, and just like all of his previous battles, he will WIN and come out on top.  I have faith in him that he can!

Crazy Motivations

If you remember, Ethan has a lovely obsession with feet. He is motivated by them, so I took his fake foot into PT yesterday and it was the best session in a very long time! He tried the walker again (even though he’s not using it as it was intended to be used) and he took quite a few independent steps too!

I am all for using whatever to get Ethan motivated- I just wish that it wasn’t so freaky looking!

Snow montage

Snow,

More pics of Ethan in the snow...with video.

Very Disturbing!

I just read on Karen's blog that someone has stolen items from Olivia's gravesite! This is VERY disturbing! What kind of person does such a thing? I had a couple of ceramic plaques, one said "Make A Wish" and the other said "Princess" up there that I got for her birthday. They were taken. There was a tiara and and another gift there that was also taken. It is so infuriating.

I will replace the plaques if they are still available. Seriously though- who steals from a little girls grave!?!?!? I shake my head in disbelief and disgust.

SNOW!

We officially have snow!  Granted, it’s not a foot of snow, but it is a lovely 3 inch blanket of snow.  It is absolutely beautiful with the sun shining today!  We are going to have to see if we can make a sled of some sort and take Ethan down a hill! 

Shep didn’t know what to do with this cold stuff!  He refused to go outside last night to pee and I don’t think he was that excited about us making him go out this morning!  He is back in the comfort of a warm living room!

If we get Ethan outside, I’ll be sure to post pics later!  Oh yeah….school is, of course, closed.