Mason came home from school today telling me that he wants to raise money for leukemia. His school is hosting Pennies for Patients for the Leukemia and Lymphoma Society. Mason knows that some of our closest friends have been affected by leukemia; one of my best friends has CML and several of our friends' kids have had different types of leukemia. Having Down syndrome increases the risk of leukemia, so this is something that is pretty near and dear to our hearts.
Mason is bound and determined to raise the most money in his school for leukemia ... and hopefully get a pizza party for his class. I told him that I would help him set up a fundraiser here on my blog ... but that he needed to be the one to ask for help. So without further ado, I had the mike over to Mason.
THERE IS A GIRL WITH LEUKEMIA NAMED GABY. I NEED TO RAISE MONEY. SHE IS 10 YEARS OLD. SHE GOT IT IN AUGUST 2007. LEUKEMIA IS WHEN SOMETHING RONG WITH YOUR BLOD. ME AND MY SISTER NEED HELP. WE NEED TO COLLECT AS MUCH MONEY AS WE CAN TO HELP. ANY AMNT IS WELCOME. MY GOAL IS TO GET 300 DOLERS FOR EACH OF US.
We headed upstairs as we prepared for bedtime last night. Mason and Payton were a little behind... they wanted to "get water" to take to bed with them. A common ritual in our house. The two of them then ran up the stairs like a herd of elephants, exclaiming that they had made lemonade.
Payton held up her cup and yelled, "Mom! 'Nade!"
Encouraging her for a job well done -- and wondering how in the hell she made lemonade, I said, "You made lemonade? Whoa, good job!"
Fast forward... the kids went to bed and Kyle and I retreated downstairs. I went to the kitchen to grab the Mt. Dew I had opened just before we went upstairs. I understand I could have a better choice of drinks... it is my guilty pleasure. You drink wine, I drink Mt. Dew. You drink beer, I drink Mt. Dew. You smoke, I drink Mt. Dew. Ha.
Empty.
Uh huh. Lemonade alright!
Kyle and I sat there, laughed and tried to figure just exactly how that conversation went down.
Mason: Here Payton, want some of Mom's Mt. Dew?
Payton: Yeah!
Mason: Okay, tell Mom it is lemonade. Okay?
Payton: Yeah... 'nade!
Little shits stinkers. Little love muffins.
It is moments like these that I sit back and say, "See self... she totally gets it. She can lie with the rest of 'em. She can deceive with the rest of 'em. She might have Down syndrome... but that doesn't stop her from nothing!"
And she sure is damn cute while she's at it.
::
I recently came across this cross that we were given when we adopted
Nika. In all honesty... I don't even remember receiving it. But it was
such a blessing to find it.
It says her Russian name + baptism + February 2, 2007.
It is the cross she was given... I presume... at her baptism.
Today is the five year anniversary of the day Nika was baptized. At the time... she was an orphan living in a Russian baby home.
There is so much we don't know about those first two years of her life... so much we wish we knew. And so much we don't know about her baptism... I guess I feel blessed to know that she even was baptized... Russian Orthodox, I assume? Did she have sponsors? I don't know... wish I knew.
I
really have this yearning tonight to find Nika's birth parents. It
isn't often that I even think of them... but tonight, I am. I really
just want to see them. And if ever given the opportunity... I would love
to show them that this little girl that they had no hope for... she is
doing amazing things. And she is so deserving of all the love in the
world.
My girls are overly obsessed with YouTube... I have only caught them watching donkeys mate once so far. It's all good. Mostly Payton likes to watch the bird's eye view of a roller coaster... no idea... she's wild at heart. And then there is Charlie... Nika has every word of this video memorized. It's hilarious... Charlie!
And if it isn't the iPad... then it's the iPod or my iPhone.
We need to have a serious intervention... Nika, especially. It is a rare moment that she is not playing on... or headed for... the iPad. It has sort of become a joke in our house... Nika, step away from the iPad.
::
We went to the auto show yesterday... family bonding day at the auto show with my mom and grandmother. We drove into DC and as we patrolled the streets for a parking lot... we saw a spot opening up on the street. There was a man... he appeared to be homeless, but who am I to classify... that stood in the road, waving me into the parking spot, as if he was in charge of the street parking. I did my parallel-parking deal and he stood behind my car, waving me on and telling me when to stop. Once parked... he kindly approached my window.
You are in a public parking spot. I agreed and said, "Yes I am."But look all around you and you will see that each and every parking lot around here is $25+. Indeed. So you decide how much my assistance was worth to you today... have a great day.
Dude walks over to the sidewalk, I roll up my window, laugh and ask, "Is this corruption? Seriously. Bribery at its best!" We all agreed that dude deserved a chunk of change... I think we came up with $12 cash. That, or we joked that quite possibly we would return to four flat tires... or a missing car. Dude thanked us and walked away counting his cash. Such suckers we are.
When all was said and done... I think my facebook status said something like this...
Home from the auto show and my babes are in bed. Note to self: Never
take 3 kids to auto show again. Nika could care less. Payton got her
fingers shut in a car door by her brother, on accident. And um, I hate
cars... found the bimbos walking around talking cars with dudes more
entertaining than anything. Oh, and trying to figure out who the secret
service was there guarding.
::
Payton: *walks out of room* Bye Mom. Schoo.
Me: You are going to school?
Payton: Yeah.
Me: Okay, see ya!
Payton: See ya!
Me: *rolling with laughter at the way she mimicked me*
Payton: MOM! PAY-TON.
Me: You're Payton?
Payton: Yeah. PAY-TON.
Now that Payton can say her name and she realizes as much... she is not appreciative of anyone calling her anything else. Honey. Girlfriend. Sweetie. She ain't having it... she quickly will turn to you, and demand, "PAY-TON!"
Duh peoples... her name is PAY-TON. That is said with a clear break in syllables... you know, in case you were wondering.
She's hilarious.
Here is PAY-TON cheering... ohmygosh, she is doing so well. We think she has deemed herself head cheerleader. Her coaches kindly put her in her place... which she so needs. Ha.
Her squad has a new cheer that they are doing to introduce them at the beginning of games. They do their thing and then each one of the girls presents herself by saying her name. I missed it this weekend because I was in the other gym with Mason... but Kyle texted me after the cheer... Payton did her cheer perfect and said her name on cue and everything.
Love. And so, so proud.
::
Been trying to take some time for me... doing little things I wouldn't normally do. Little things, that once you do them... you wonder why you don't do them more often.
The local cupcake shop. Why have I never been there and why don't I go more often? Heaven.
A bath. I don't think I have taken a bath since I was trying to force myself into labor with Mason. For reals.
A hot drink from Starbucks. I don't drink coffee, so I rarely go there. But once in awhile some hot cocoa in a little Starbucks cup... it relaxes me and makes me feel happy. And walking around with that cup in my hand makes me totally get the Starbucks obsession.
Breakfast. On the griddle... something I rarely do. And eggs without broken yolks = a happy day.
Beer bread. I love to bake... not sure why I don't do it more often. It makes me feel all Martha. Last weekend, I made some beer bread for football Sunday. In my world, beer bread is reserved for parties. It made me happy to make it... just because.
A splurge. I have become obsessed with schoolhouse lights... and sort of went on a mission to find the one that was just right for my laundry room. Love.
I am a nerd... I understand this. Ha. I realize it sounds stupid... but just the feeling of actually doing for myself... it triggered something. Momma likey.
At the beginning of the school year, I had a lot of anxiety over Payton's relationship with the other kids in her class. The same old worries... would they like her, would they play with her, would they consider her a friend, would they be helpful to her... or would they shy away from her because they see her as different than them.
I went back and forth, trying to decide whether or not to send a letter home to the other parents in her kindergarten class. I bounced the idea off of her teacher, bounced it off of my mommy friends... those with kids that have special needs and those that don't. The consensus was... it's a good idea.
So... Kyle and I drafted a letter. It was hard... mostly because we didn't want to come across as crazy overbearing parents... and we wanted everyone to know that we are an open book. That we understand that most people don't really get what having Down syndrome means for Payton... and without being told, that they don't really know that our expectations of Payton are the same as that of her big brother.
Dear parents,
As we settle into this school year, we would like to take the opportunity to give you a special introduction to our daughter … Payton … who is in Mrs. xxxxxxxxx kindergarten class.
Payton is a very independent, active little girl. She enjoys a wide variety of activities … playing house, reading and dancing … but mostly she just loves anything that involves being with her friends. She is a sports fanatic … thanks to her big brother … and she just completed tball season through the Greater xxxxxxxx Baseball League. She also is in Daisies and will be cheerleading for basketball this winter through Upward.
Besides being a very “typical” kindergartener, Payton also happens to have Down syndrome. Your child might come home wanting to know more about her and why she is a little different. Based on our past experiences, most questions from children this age are related to Payton’s speech and her inability to communicate effectively.
Payton has Childhood Apraxia of Speech. While we are able to communicate with her well, it can sometimes be hard for others to understand her. She can talk, but Apraxia (a speech disorder) makes it hard for her to form certain consonant/vowel combinations. Sometimes she drops beginning sounds, sometimes ending sounds. Sometimes none at all. For example, she says “No” quite well. :) Or … “Max” will sound like “Ax” … “Milk” she cannot say at all (that l/k combination is very hard) and so she signs it (envision using your hand to milk a cow by squeezing). Payton works very hard in speech therapy several hours per week to conquer her speech delay. She has a long way to go, but she has come so far and we are so proud of her!
Like most children, Payton has an insatiable curiosity and strongly desires to be independent … did we mention that? :) She is primarily a visual learner and will imitate what she sees others doing. We encourage you to share what you feel is appropriate about Payton with your children so that they can understand how she is different, but more importantly how she is the same as they are. Encourage them to support her without babying her, and to talk to her like they would anyone else, perhaps giving her a bit more time to respond and a little more explanation if she does not understand. They can also remind her to stay with them if they see her heading away from the group, and to make sure she is keeping her hands to herself.
Research has shown that children with Down syndrome benefit from placement in a regular education class, receiving their education alongside typically developing peers of their own age. Regular opportunities to learn and play alongside typically developing peers gives children with Down syndrome the role models they need to acquire new skills, encourage age-appropriate behavior, and develop independence and friendships.
Inclusive education benefits not only our child, but studies have shown that inclusion has a great benefit to the other children in the class. Inclusion facilitates greater understanding, tolerance, as well as learning to be supportive of one another. Children also learn to value diversity and to appreciate that everyone has something beneficial to bring to the life of the school and the community.
We are grateful for your support and for the support that Payton will have in Mrs. xxxxxxxxx class. She will have a team of people that will help support her learning needs and facilitate the inclusion support. We are also grateful for the opportunity to be in a learning community together and look forward to meeting you (if we haven’t already) and working together for a great year at xxxxxxx.
If you have any questions about Payton or Down syndrome, please feel free to contact us at (insert email here) or (insert phone number here). We are very open about our experience and in talking about what it means to have Down syndrome … no question is a silly question and we would rather share with you, than have you wonder. :)
Sincerely,
Kyle and Bethany Balsis
ps … We have put together a Q&A on the reverse side to help you field some questions that your child might have, or to help you in talking with your child about Payton. We hope this is helpful to you. :)
What is Down syndrome? Children born with Down syndrome have one extra chromosome in some or all of their cells. The chromosomes contain directions that tell your body how to grow. When a child has an extra chromosome it mixes up her body’s directions a little. That is why they may look a little different and have to try harder to learn.
Will Payton always have Down syndrome? Yes, it is something she will never outgrow.
Will Payton be able to do things like me? Yes, she will be able to do everything like you do, it may just take her a little longer to learn than most kids. She will learn to talk more clearly too, it’s just that learning to talk is often very hard, but just like anything, with a lot of hard work and practice she will get better over time. Payton also can do things you might not be able to do yet, like use sign language.
Is Payton sad that she has Down syndrome? No, right now Payton is happy to be a growing little girl. She feels successful in her life; she loves to learn new things, just like you and me. You’re fortunate to be growing up in a world where people understand that everyone is unique, but that we all enjoy and want the same things, like having loving families and friends, going to school, and being accepted for who we are.
We received great feedback after the letter was sent. I think some of the parents (maybe all, I have no idea) appreciate our transparency. And well... we appreciate them more than they know... and we appreciate them having that conversation with their child.
Kids don't know what they don't know... and we are so thankful for the amazing kids that Payton has in her class this year. It has made her being included in general education so much easier... so if you are reading, thank you.
