Sweet Aidan is doing WONDERFUL!!! It is truly amazing at the progress that he continues to make! Thank you to Renee for posting the prayer request on her blog and for having Kelly @ Kelly's Korner post it on hers. Another special thanks to Jenn for taking the time to go up to the hospital where Aidan was and offering her support in person. I feel that my options are limited in terms of being able to help Kalen, Melissa, and Aidan, but I am a firm believer in what prayer can do, so if you have said a prayer for Aidan and his family and/or posted his link on your blog, please let me know!
The other request that I posted was for the Freeman's. I know many of you already know, but sweet KayleighAnne Freeman went to Heaven on May 11th. The memorial service is tomorrow- please pray for the family.
Thanks again. Much love always.
~Kristen
Saturday, May 16, 2009
Quick Update
Aspirate Pneumonia
Ethan has it. We already thicken everything to honey-thick, so I don't know if something just slipped by or if he aspirated his own secretions. Who knows. I just know that he has had a cough for over a month. We went through a bottle of Mucinex and a round of Omnicef to no relief for poor Bub's. Ethan had his 3-month HEMOC checkup this past Tuesday and I asked for a chest x-ray. Even though our wonderful doctor said that his lungs sounded clear, he was happy to order the scan for me.
Dr. McLean called me with the results:
Dr.: Kristen, guess what the x-ray shows?
Me: NOTHING. (Simply because I was SURE that he had junk in his lungs, but the doc's like to try and prove my Mommy theories wrong. I thought that he was going to say "I told ya so- they are clear")
Dr.: Nope. He has a nice section of junk in his center right lobe.
Me: Really? Well, lookie there. Funny how that works when the Mommy is on to something. =)
Dr.: You were right. You followed your instinct and were right again. The area of pneumonia is pretty common for aspiration pneumonia.
Me: Well, that's just great. (can you sense the sarcasm dripping?)
What we have here ladies and gentlemen is what we refer to as an ETHANISM: when nothing makes sense- medically, behaviorally, or developmentally, Ethan will do it HIS way. (3 different docs listened to him and said his lungs were clear.)
So, Ethan is now on a 2-week dose of Augmentin. He still has a cough, but it is getting better, the drainage has reduced greatly, and he is sleeping much better. His appetite is starting to pick-up again, which is nice since he lost more weight and I could see his ribs. =(
You could say an extra prayer tonight that he continues to heal. Thanks.
A Belated Wish for All You Mother's
I had planned on signing on to wish all the wonderful Mother's out there, a very Happy Mother's Day, but I laid in bed with my clingy boy who would not let Mommy even get up to pee without crying. I was happy to be there for him though. I hate that he was not feeling well, but I thought it was appropriate to feel needed by my child on Mother's Day.
Another shout out to my Mom- my Mommy...I hope that you had a fantastic day! I love you so much.
And, to my Grandmothers (Mom & Grandma), Aunts (Shell, Bitsy, Bonnie, and Annette), and Sister (Kim)- I love you all so much. My sincere apologies for not being in touch more often. {To my defense: Aunt Bitsy NEVER returns a phone call!}
Sorry it wasn't more grand for you. I hope you know that the love I have for you in my heart is beyond grand.
Putting It In Perspective, By (my sis) Kim Van Meter
I was all set to write about our recent family vacation to San Diego but since I've returned a few things have happened that make talking about a trip where we ate too much, spent too much money, and played tourist seem completely inconsequential.
The past week could be described as emotionally draining.
Most notably, my mother and 2-year-old nephew were in a horrific car accident that very nearly could've taken their lives if luck had not been riding shotgun.
My mother was returning from Valley Childrens Hospital in Madera with my nephew after being up with him all night for a frighteningly high fever. She was nearly home when her sporty Toyota Celica GT drifted onto the soft shoulder where the sand grabbed her tire and spun her right into a tree. The side curtain and driver side airbags deployed and my nephew's car seat kept him firmly in his seat, but gave him identical seat belt rashes on his little neck. My mom was bruised and battered but alive. A miracle, really, seeing as she'd been pinned in the car and the tow truck driver was amazed anyone had walked away from the wreck.
When I received the call from my younger sister I knew immediately something was wrong. There was on odd timbre to her voice and there was a subtle shake to her words. My sister is rarely prone to dramatics so I knew whatever was wrong must be serious.
When she said, "Mommy and Kristopher were in an accident" I felt the bottom drop out of my world.
My stomach clenched and dread fluttered in my chest as I asked, "Are they all right?"
My sister quickly assured me they were, although the car was toast, but I couldn't stop the shake in my hand as I held the phone.
I called my mom. She sounded lost and frightened, perhaps in shock. You'd have to know my mom to understand how that's not normal. My mother is a force of nature. Always has been. She's strong and formidable. She takes no bull and gives none either. She's not politically-correct (and has no desire to be) and sometimes she says things that require damage control later. But that's just who she is. When I was a teenager she had pens made up that read, "Leslie Van Meter...professional sh*t-disturber. You have a nice day!" and she proudly gave them away as readily as I pass out promotional bookmarks. And really, that's the tip of the iceberg. I could spend all day trying to capture in words the true spirit of my mother and not have enough time or paper. She's complex and amazing; stubborn and loyal - and sometimes maddeningly literal - but several things she is not and that is weak, scared or lost.
Hearing those emotions in my mom's voice triggered a fear so staggering in my own heart that I found myself shaking even harder.
The fear was easily identified but I was shocked at the magnitude: I'm a fully-functioning adult with children of my own yet I'm not ready to face the world without my mother somewhere in it.
Even if she's driving me crazy with her stubborn nature.
Even if she's confounding me with her refusal to adhere to logic and reason.
Even when she continues to put red onions in her potato salad when she knows I hate them.
Do you ever stop needing your mother? I don't know. I rely on my mother in ways that I never paid attention to and I suppose, took for granted. So, I guess this is the message I'm trying to share in a long and personal round-about way. We all have people in our lives - mothers, fathers, cousins, friends - who can drive us crazy but try to imagine how empty our lives would feel if they were no longer in it.
That's something to think about, right?
Who are we without our friends and family? It's a sobering thought...one often confronted when it's too late to tell them how much we love and appreciate them because they're gone.
Sometimes in an instant - always too soon.
My sister wrote this beautifully written article for her newspaper. It really hit a lot of the points that I had planned on writing myself (LOVE the "maddeningly literal" comment...that was perfect!). I just haven't been able to really write it down. So, I choose to plagiarize my sister and add:
Mommy:
You and I rarely see eye to eye on anything, but that never means that I don't love you. I am as stubborn as you (if not more some days!), and I think that I may need to have some of those sh*t-disturber pens made for myself that way people take me seriously. =) I have come appreciate the onions in your potato salad because it's YOURS (the pieces could be smaller though, *wink, wink*).
And, the answer to the question of when you stop needing your Mother? NEVER. I will NEVER EVER stop needing you. We all need you. I'm not ready to think of not having you here for us again, so please get your rest- YOU DAMN STUBBORN WOMAN whom we love so much!!! ;-)
Friday, May 15, 2009
School pics
I have had so much going on! I will try and post later. In the meantime, you can take a peek at Ethan's school pics by clicking here. Click on the Proof/Purchase Portraits link and enter the password: 797FKKFFIOIS. (3 numbers, the rest are letters)
It took a lot for us to get the smiling shot. I love it though. Ethan is showing off his badge with pride. More on that later...
Friday, May 08, 2009
A very special Happy Birthday!
As I tackle photo albums, I am upset that the amount of pictures that we have together is extremely limited. We may just have to work on that...
I wish that I was home today to give you a HUGE birthday hug. Truly, I do.
Happy Birthday today and so many more May 8th's! I love you.
Love always,
Your Yellowhair
Wednesday, May 06, 2009
Special Olympics Spring Games
Last week was the Spring Games for the Special Olympics. Because Ethan is not eight yet, he simply participated and did not get any ribbons. =(
Mary had the honor of running the torch and lighting the flame. I think it is really special that she ran her leg while pushing David in his chair.
Ethan shot hoops, threw bean bags, played golf, bowled, and “ran” an obstacle course. It was a beautiful day and I was so proud of ALL of the participants, especially my little man who continues to improve on his walking skills. I do believe that next year Ethan will be running in his own race!
On the second day of the games, Ethan’s classmate, Kenny, was set to race the 10m. Turned out that there were not any other participants for that particular event, so we asked if Ethan could run alongside Kenny. The officials agreed as long as we understood that Ethan would not get a ribbon. We were fine with that and figured that it would be good practice for NEXT year! I am so proud of both Ethan and Kenny!
And, to those wondering…Yes, I cried.
Tuesday, May 05, 2009
Wednesday, April 29, 2009
Tuesday, April 28, 2009
Prayer Requests
Kalen is an old friend from high school. He and his wife, Melissa, have a little boy named Aidan. Aidan has had a terrible fall, leaving him with severe brain trauma. The family has created a blog @ http://www.prayersforaidan.blogspot.com/. I have never had the chance to meet Melissa, but what I know of Kalen, this little guy has the best Daddy and I know that Kalen, Melissa, and Aidan would appreciate your prayers.
There is a button on my sidebar for KayleighAnne Freeman. KayleighAnne needs a miracle, or she will be going home to Heaven soon. Please say a prayer for the family.
And, lastly...I have an unspoken request for someone very dear to me and whom I love very much. I cannot and will not release information, as it is too private, but if you could just say an extra prayer tonight.
Hug your babies. Give them that extra kiss. Don't worry about the mess, you can clean it up later. Just love them.
Thank you.
And, thank you to those who have prayed over my leg. It is feeling MUCH better!
Thursday, April 23, 2009
Crap week
The other day, Kamrin called me to tell me that my Mom was in an accident. She was on her way home from taking my nephew, Kristopher, to Valley Children’s for the flu. My parents live in the 
I am happy and thankful to report that both my Mom and Kristopher are OK! Kristopher has seatbelt burns, but that’s all. My Mom is sore and initially thought that the airbag broke her nose, but it’s ok too.
My sisters and I all begged for her to go to the hospital after the accident and, the stubborn woman that she is, refused. She promised to go the following day. So, my Dad took her to the hospital the next day and they made sure that she didn’t have any internal injuries or broken bones. My Dad is going to get her checked out with a neurologist just to make sure she didn’t have some kind of seizure or something. They think that she has sleep apnea, making her exhausted to where she fell asleep at the wheel. Either way, it cannot happen again! Mommy- we love you too much to have anything happen to you, so PLEASE see the doctor that you need to!!!
This accident could have been so much worse if only 5 more minutes up the road. Thank you, GOD, for their protection!
Oh, and as you can see- the car is TOTALED.
Yesterday, I tore my calf muscle pretty bad…walking. I would LOVE to come at you with some GRAND story of running to save a stray dog from being hit by a car or some crazy stuff like that, but
Here’s to hoping and praying that the week goes better!
Sunday, April 19, 2009
JACKSON HAS A SPONSOR!!!
I just found out tonight that my Jackson has a sponsor!!! I am so filled with positive emotion right now! This boy has a permanent place in my heart and to know where he came from and from what Challenge Farm is doing for him, I am overjoyed that his place on the farm is secure. BIG thanks to Jackson's sponsor!!!
Friday, April 17, 2009
Melanie Kiana Dahlem
Six years ago, my beautiful cousin passed away. She was a beautiful, bright, smart, loving, cheerful young lady taken too soon. I am not sure if we will ever understand why Mel got sick or why she was taken from us, but I do know that she is with God and that is the only thing that brings me comfort with Mel being gone.
Tuesday, April 14, 2009
What I am fighting for...
I have never participated in Wordless Wednesdays, but if I did, this would be my post for tomorrow! This is only a sample of the love and attention Ethan gets from the students at his school and this was not staged. These girls help him, guide him, teach him...and Ethan teaches them too! This is what our lovely school district is trying to take away from all of the kids. Remember the awesome things that his peers wrote to him? Click here for a reminder. Inclusion is not only for the child with special needs, it is also for the child who will be the accepting mentor. Our society benefits from both.
Sunday, April 12, 2009
Saturday, April 11, 2009
Thursday Recap
Thursday was such a busy day!
First, Ethan had swimming at the YWCA with his class. I usually go and swim with him. The first pool that we got into was abnormally cool and Ethan even caught his breath a little after getting in. The aquatics director said that the other pool was available for us to use and that it was much warmer, so we got out of Pool A and went on over to Pool B. What a difference! SO much better! Ethan LOVES to go underwater! I hold his mouth shut, count to three, and then plug his nose while dunking him under. He keeps asking for MORE, MORE!!! Another thing that Ethan is going to do is break a record for longest yawn! That boy has had marathon yawns since he was a baby and he had one Thursday that I think almost lasted two minutes! Makes me tired thinking about it, and yep- just yawned myself.
After swimming, I took the papers that SSA had requested over to them. Then, I went down to the Children’s Home to see about volunteer opportunities. It is a place that I have thought about giving time to. Ok, so it seems that I don’t have any time lately, but if they needed me, I would make time. After that, I drove out to have lunch with Scott, Heather, and Bill. That was a treat- everyone was in a goofy mood, which is always a lot of fun.
After lunch, I had to go over to pick Ethan up from school for his neurology appointment. When I got to school, he was down in Mrs. M’s Kindergarten class. She just loves him. They were having an Easter party with little poundcakes made into the shape of an egg, with pudding as the yolk (very cute), cotton candy, and punch. He didn’t want to leave! Mrs. M. definitely spoils Master Ethan!
As we were leaving, I could see some of the students peeking into the window watching Ethan. These are the same children that love to play with him at recess and help him walk. Ethan was being a little stinker until we opened the door and he saw his girlfriends waiting for him! Talk about a little flirt…he hands out smiles and giggles AND hugs and kisses! We actually have to stop the kids some days because I don’t want it getting out of hand.
So, we finish up with neuro and race home so I can shower and get ready to go to the Chris Tomlin concert! My friend, Kristie, had called me earlier that morning to say that her husband wasn’t going to be able to make it to the concert and asked if I would like to go. Ummm, YEAH! LOL!
I came home and was still all jazzed, but I lost the momentum somewhere because in the middle of talking to Scott, I fell asleep.
Wow, that was a much longer post than I had set out to do! Congrats if you made it through! =)
Neuro update
Well, I took Ethan to his neurology appointment on Thursday afternoon. We were there almost two hours. I was pleased with the doctor's bedside manner and how thorough she was.
Because of the possibility of Ethan having seizures, she has ordered a sleep deprived EEG to see if there are any misfirings going on in his brain, and an MRA to rule out Moyamoya disease. If the EEG is clear, then we will likely do an inpatient stay in the epilepsy unit at the hospital so we would press a button if Ethan has an "episode" and then the report from the EEG will line up with any seizure activity (if any).
The lesions on Ethan's brain could be from a number of things, one of which is chemo. There really isn't a way to tell where they came from. They are not a concern unless they continue to change, so I assume we will have routine MRI's annually? I forgot to ask.
Doctor did confirm that Ethan's cerebellum is smaller and has extra fluid. It appears to be a mega cisterna magna. This could be insignificant and it could also be Dandy Walker variant.
There were a couple of other concerns- the amount of hair on Ethan's arms and back, and his lack of muscle mass (even though he is VERY strong). She thinks that he may have a vitamin deficiency because of his feeding issues. We will cover that all with a different doctor though.
Overall, it was a good appointment. I didn't leave freaked out about anything. I look forward to trying to figure out what is going on with Ethan when he has these "episodes". I want to thank my friend, Leah, for being such a great support to me before and after the appointment! Leah's daughter was recently diagnosed with Complex Partial Seizures and her episodes are eerily similar to Ethan's. THANK YOU LEAH!
I will update when we have our EEG and MRA scheduled.
Tuesday, April 07, 2009
SSI
Yes, I feel like this right about now in regards to Social Security.
Every month, I have to supply our financial statements and paystubs to the local SSA office. I happily provide the information because, frankly, they provide Ethan's insurance. Once they have logged the important info, they send me back my papers and I then shred them.
SSA called a couple of weeks ago and REQUIRED requested that I send them the exact same info AGAIN from August 2008 to present. If they don't get said documents in 15 days, they will cut Ethan off. I believe that it is in the job description at SSA to talk to their clients like they are the scum of the earth.
NEWS FLASH: I did NOT ask for this. I did NOT purposefully make my child have an extra chromosome so I could milk the SSDI system. I would really appreciate it if they quit treating me like some welfare-loving, crack-addicted, knocked-up whore from the other side of the tracks.
The only reason that we have SSDI is because of Ethan's needs and my inability to have a "real" job because of those needs. Daycare's will not take Ethan. Why not? Because, he is an almost 8 year old child with Down syndrome, PDD-NOS, and Sensory Processing Disorder (SPD) who is not potty trained, nor walking without assistance, nor eating/drinking without assistance. That list does not fare well in the general daycare population.
Then, we have Ethan's private therapies that he needs and all of the specialists that he sees. Even our caseworker said to me, "You couldn't work if you wanted to". Yeah, no kidding.
We have been on the medicaid waiver (CAP-MR/DD) list for about 4 years now. I was told that we seem like we would be priority when a slot opens, but who knows. In the meantime, we get closer and closer to bankruptcy and possibly losing our house (no, we are not behind on our mortgage, but it is a possibility every month).
We are only allowed a certain amount of income before SSA would cut off Ethan. You would be shocked at the amount. Basically, I can't even get a part-time job because we would run the risk of going over and, frankly, the cost of gas to and from would not be worth it.
All of this stress is going to make me lose it. I am trying to do the best I can for Ethan and I am treated like dirt for it. It's just all so frustrating. This is not where we should be! We always had limited debt and now, we are about maxed out from living on credit way back when Ethan was in the hospital all of the time. The hospital has ruined my perfect credit. If I had balls, then the government would be holding them.
(*I am sorry for that rant. I did not intend on that! But, it feels better to be able to vent a little. Just ignore me. We'll be ok.*)
Neurology
FINALLY called me today to give me an appointment for Ethan!!! They had a cancellation on Thursday at 3pm. I will take it!!!
Threading
I had my face- yes, face- threaded today. Ok, the eyebrows didn't hurt that bad, but the lip and cheeks? OMG. Maybe there is a reason that God made me furry, because that was like taking an epilady to my face.
With that said, my face is as smooth as a baby bottom and I am noticing all of the imperfections that my blonde fuzz covered! LOL. I am not sure if I will keep up with the "Full Facial", but I would have my lip and eyebrows done again by threading. I hate the way waxing makes my skin feel weird for a day or so. I was red at first, but it was gone after an hour. Ah, the pain we go through to feel pretty...
Saturday, April 04, 2009
Mariposa Tourism
If you are planning a visit to Yosemite National Park this summer (or any other time), be sure to go through Mariposa- my beautiful hometown that I miss so much. The town thrives on tourism to the Park. I always think, in the back of my mind, that I will one day return home to Mariposa.
Yummy.
Today is a REALLY nice day! The sun is shining, the wind is blowing, the sounds of lawnmowers are all around me...FINALLY.
There is a kite festival-type thing going on down at Bethabara Park, so we took a picnic lunch down there. The wind is perfect for kite flying. I wish that we had ours out of the attic to take, but alas, we did not. Oh well.
While sitting on the grass admiring all of the different kite's, Ethan decides that he needs a little bit of green in his diet, so he begins to eat the grass. I should say attempt to eat the grass because we kept wiping it off of his hands before he could eat it. His determination was wild. It was like it was his new favorite food. *eye roll* Ugh...I can't get this kid to eat a cheerio, but he'll eat grass. What to do?
Wednesday, April 01, 2009
Bold, but oh so necessary
The small print reads:
"Most people who would never knowingly use disparaging terms don't see a problem with saying "retard". This must change. It's just as hateful as any other slur. And, for millions of people with intellectual disabilities, their families and friends, it hurts just as much. Please, don’t use the R word.”
Hats off to Special Olympics for releasing such a bold campaign. I think that many would have shied away from such a controversial ad. They put in print what many parents, families, and friends have been saying for a long time.
This is not about limiting free speech, this is about respect and dignity for all. And, just because you know someone who has a disability, does not make it ok for you to use the word, just like it is NOT ok for me to use the "N" word just because I know someone who is African-American.
IN HONOR OF
One of my besties, Cindy- or as she is known around here, Cinders, let me know that her cousin, Niki, is training with the Leukemia & Lymphoma Society's Team in Training to raise money for blood cancer research! Niki has a fundraising page and she mentions Ethan among the people that she is running "IN HONOR OF". It means so much to me that someone who has never met Ethan would train in his honor.
As most of you know, Ethan is in remission from Acute Lymphoblastic Leukemia (ALL). His "cure rate" is 80%. 80% is NOT 100%!!! Research still needs to be done in order to get that number to 100%, and that takes $$$$$. We do not let the fear of relapse consume us, but it is always in the back of our mind everytime an unexplained fever pops or bruise pops up.
I know that times are hard financially for many people these days, but if you feel led to donate to such an amazing organization, please support Niki here. Any amount helps! Thank you!!!
Movin' on UP!
Yesterday was Ethan's neurosurgery follow-up at Duke. His doctor is very pleased with Ethan's progress and doesn't need to see him for SIX months! That's excellent news!
Why do I have a picture of a growth chart (Uppercase Living, btw)??? Because my son- the same son who has not grown in close to TWO years- GREW AN INCH!!!!! After being "stuck" at 40 1/2 inches for close to two years, he is now 41 1/2 inches and still holding steady at 37 pounds. I was so excited in the nurses station! I started jumping with excitement! He will get to ride the big boy rides some day!!! LOL!
After the appointment, we headed over to the actual Duke University campus so we could go to the campus store and buy my friend, Carmen, some Duke gear. She lives closer to the West Coast, but loves Duke! That store was like the Duke mecca! A little overwhelming...I think that half of the store was laughing at me while I strolled through while having Carmen on the phone asking her if she wanted this or that...I hope to get the package together here in a bit for her. Carmen, I hope that you love your new Duke wear!
Tuesday, March 31, 2009
Just curious
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?
Monday, March 30, 2009
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.”
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.
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.
Friday, March 27, 2009
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!
Tuesday, March 24, 2009
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.
Friday, March 20, 2009
Thursday, March 19, 2009
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!
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.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.
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...
Wednesday, March 18, 2009
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.
Monday, March 16, 2009
It's BOGO Time at Uppercase Living!!!
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
Saturday, March 14, 2009
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...
