Doing for myself.

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.

::

'Til next time.

a letter to parents.

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.

Breaking the barrier.

Sitting here on a cold frosty morning with my sleepy eyed babies... all of us piled on our less-than-large-enough couch... one blanket to go around. Nika the last to rise and join us, she crawls up next to Payton and says, "Blankey? Me?"

To most... this may seem insignificant. To me... this is big. Having been an orphan in her past life, Nika tends to be a very stay-behind-the-scenes, submissive kid. That's not to say she can't throw a good temper tantrum. Ha.



At one time... she would not have joined us on the couch, until invited. She would have sat on the floor in front of us... as if she was not worthy.

At one time... she would not have asked for some blanket, until offered. She would have sat next to us and shivered... as if she was not worthy.



It has taken us awhile to get her out of orphan mode, when it comes to certain things... and we still have a journey ahead of us. One of her goals in speech therapy has been to use her words and ask for things on her own without being prompted... like something as simple as asking for help.



We are getting there... we are breaking this thick barrier. It is good.



::

I think I'm nesting... only I don't quite have a reason to nest. Other than the fact that my house has way too much crap in it and I am close to deeming myself a hoarder.

Okay, not really... but we do have too much crap. It's sickening, really.

One problem... I tend to jump from project to project. If any one thing ever gets completed... it is a reason to celebrate.

Yesterday's project... front closet makeover. This closet faces the kids' backpack corner and it is for shoes only. Previously, I had plastic fabric shoe racks hanging from the shelf above.

But three kids + plastic fabric = disaster.

I decided to remove the shelf, paint and install those wooden cubby shoe racks... three of them stacked vertically.



Fairly boring, really... but great for organizing shoes. Especially considering we are always missing one shoe of every pair... not an ideal situation when you are trying to get out of the house with children in tow.

::

Mason started winter training for baseball with a local pro this week... he is so excited. I love that he has something that he loves so much. He has become quite the little baseball player... my baby ain't so much a baby anymore.



Love him.

happy birthday bubs.

my dearest mason.

you are eight.

eight years ago...

i would have said that your 8th birthday seemed centuries away.

but here we are.

you are caring.

you have compassion.

you are so helpful, loving and patient.

we are often told by others how great of a big brother you are.

and they are so right.

God knew exactly what he was doing when he gave you that role.

i asked you to list your favorite things...

baseball. football. basketball.

macaroni and cheese.

ride bike. play outside.

legos. video games.

happy birthday bubs.
we love you like crazy.

::

the party.

rolling video games.

it was awesome.







mason and his buddy are just a few days apart.
they wanted to have a joint party... so we did.
these two are gonna give us a run for our money one day.
love them.

and it ain't no party without a cute snack table.
corn dogs. nachos. popcorn. and a coke.
that is pure healthiness, right there. ha.

the trailer was awesome.
four big screens inside... two outside.
16 game controllers. and one long bench.
there are also subwoofers under the trailer that make it vibrate.
add a little mood lighting... and lots of noise.
an 8 year old boy's idea of heaven.

the sisters outside getting jiggy to just dance.

happy birthday to you.

happy birthday to you.

happy birthday dear mason and max.
happy birthday to you.



and a balloon release to cap off the day.
perfect.

reflection... six years later.

Six years ago this week, our baby girl entered the world. As she laid on my chest shortly after delivery, I looked down at her and vulnerably stated, "I don't think she is supposed to be this color." Indeed... she was having serious problems breathing and was taken to the Neonatal Intensive Care Unit.

shortly after delivery (don't mind the blood and gore)

Traumatized from having my baby girl whisked out of the delivery room... I don't remember much. Although, I do remember a nurse wheeling me into the NICU to see my daughter. As I peeked over her isolette and saw her swollen little eyes... I knew in my heart that she had Down syndrome.

shortly after being stabilized in the nicu

At the time, I didn't voice my concerns to anyone... not even my husband. I think I thought that if I didn't talk about it... then perhaps it wasn't a reality. Eventually the doctors voiced their concerns... and they were the same as mine. We truly didn't know what having a child with Down syndrome meant for our family.

Looking back... I'm kind of sad that I was never educated. I really didn't know a thing about Down syndrome... or disabilities, in general. I didn't know anybody that had Down syndrome and I had nothing to look forward to. Our doctors were not the most supportive and the brochures that we were given regarding our daughter's diagnosis were less than promising. I felt more than alone.

This is why we educate and advocate however and whenever we can. We live our life... Down syndrome or not. We put ourselves out there and try to show the world that Down syndrome ain't so bad. Down syndrome is not a death sentence... hell, it isn't even debilitating. It is true love. It is sheer joy. It is acceptance of differences and embracing the same. 

summer 2011

We have always said that if just one person is touched by our girls... then our job is done. But our prayer is that we go beyond that... I think we already have and we will continue to do so.


Six years ago this week, I sat in a booth at Chuck E Cheese with tears streaming down my face. We were there trying to have some semblance of a celebration for Mason's second birthday... the same day that we were to bring our daughter home from the hospital... seven days after her birth.

As I sat there, I couldn't help but watch the children run, laugh and play... all the while trying to hold back my tears... which was nearly impossible. I wondered how Payton would fit in to a scene like Chuck E Cheese. Would she even be interested in something like that? And if so, would the other children play with her... or would they stare and shy away from her? My heart broke all over again that day.

We often say... if only we knew then what we know now. Payton is just one of the kids. She plays, runs, climbs. She enjoys the same activities that all children do... and she does them just the same. She has play dates with her friends. She gets invited to birthday parties... and she has some pretty amazing parties of her own. She plays tball, she is in girl scouts and she is even on a cheerleading squad for a local basketball program.

summer 2011

While Payton might not have all the social norms down pat... she has fun and she loves what she does. We could care less how far she hits the ball, how many words to a cheer she knows or even how many moves she misses. She is happy to be with her peers... doing what girls do. We are so proud of her and her happy-go-lucky self.


Six years ago this week, we wondered what school would look like for our daughter. Would Payton be educated with her peers? What would her learning look like? Would she have friends? Would the other kids make fun of her?

I have to say... we are so blessed with our team at school. Payton is included in a regular kindergarten classroom 100% of the time, with some push-in support. She is doing amazingly well... and a big part of that is her peer support. Yes, she has friends. No, they don't make fun of her. They are proud of her and they help her along however they can.

The other day I walked into her classroom, and one little girl ran up to me, "Payton passed her test today!" She was so proud of her... as was I. The kids understand that Payton needs more support than they do... they understand that it takes her a little longer to learn the things they do. It is good... we are in a great place and it makes my heart happy. One of my DS momma friends once joked that her daughter is like the mayor of the school... ohmygosh, so true. When you walk down the hall with Payton, every.single.kid... "Hi Payton B, Hi Payton B, Hi Payton B." Love.

payton and some of her classmates

Here is where I will say that inclusion is hard work. I had to push a bit to make this happen, but we are so lucky to have a team that was willing to try... and willing to be educated about how to make this work for Payton. And I think she is showing them over and over again that she can do this. Inclusion can be successful, you just have to know how to make it work. You need to support your teacher and be present in the classroom. You need to network with the other parents and help them to understand Down syndrome, so they can relay that to their children. And so far... it is working.

::

Man, I love that chick so much... she has changed my life forever. I was bawling the other day just thinking of how far she has come and how thankful I am for the blessings in our life. I'm not sure how many years I have cut off my life worrying about both of my girls... many of those worries unnecessary in hindsight, but when you don't know what you don't know... you worry.



Six years later, I hope we have shown in some way that life is good having Down syndrome in it.

this is huge for us.

having an emotional morning after doing some reading with payton. 

from a reading perspective and from a speech perspective.

we honestly never knew what her capabilities would be... or could be.

we always just hope for the best.

she continues to blow us out of the water.

she works so hard.

and each milestone deserves 100 gold metals.

she is reading. 

she can finally say her name.

this is huge for us.

she's six.

six years ago yesterday... our lives changed forever when our baby girl was born. more reflections to come this week, but for now... payton's carnival birthday celebration.

a celebration of payton's life. a celebration of down syndrome. a celebration of every thing that she is... and so much more.



the snack bar.


i made this after being inspired on pinterest. isn't it adorable? i love the pennant flags!

icy cold lemonade.



swirly pops and popcorn.





cotton candy and nachos. churros and roasted peanuts.





carnival games.

duck pond.







bean bag toss.



clothespin drop.





face painting.







photo booth.



party hats, rock star sunglasses. and don't forget the lips and mustaches. just don't glue the mustaches upside down like i apparently did... oopsie.


i adore this photo... payton and some of her classmates.

when we had a garage sale fundraiser a few years ago for our adoption of nika, someone gave us a polaroid camera and film. we didn't sell it and it has been sitting in storage since. kyle pulled it out and found it was fully functional... yes! photo booth perfected.







my absolutely scrumptious niece. love her.



the limbo.







hold the line please. snack break.


she's a trip.



the prize booth.







happy birthday to you, happy birthday to you!
happy birthday dear payton, happy birthday to you!



for party favors... we sent each of the girls home with a goldfish. i was really nervous the parents would kill me for this... but i knew the girls would love it. we wanted to make sure they all had some food on hand, so we borrowed some ketchup containers from *cough* a fast food chain *cough* to hold fish food.

*snickers*



trying to keep 35 goldfish alive is hard... we bought them the night before the party and 19 of them died. that is not a typo... seriously! stupid fish. we restocked the morning of the party. lessons learned... do not feed the fish and do not admit to the pet store that the fish are for a birthday party or a carnival... because uh, they aren't allowed to sell them to you if you do. why yes sir, we do have a 10-gallon tank of um, just goldfish.

*grins*



i have to say... the goldfish were damn brilliant. love it... and i think everyone else did too.

after most everyone went home... we went outside so payton could let her balloons go into the sky. whew... that made my emotions let loose a bit. the finale to an amazing party... sort of symbolic, sharing the love and happiness from our day with the world.





and then more than half of the damn balloons got stuck in the trees.

*sigh*



let's just pretend that part didn't happen.



bye boons... in the sky!



the perfect ending.

best part of the day... seeing the happy, giddy faces of payton and her friends. there is so much that you miss when you are the party hostess and have your face behind a lens. but... i loved hearing stories from our friends and family after everyone went home.

it makes my heart happy.

happy 6th birthday payton... i hope your day was everything you could have ever hoped for and more. one thing is evident... you are loved and supported by so many.

we are blessed beyond measure.

::


party tips... coming in a bit...