Monday, March 23, 2015

A Typical Tuesday according to Miss Kamdyn

When Ellie was younger, I didn't know really anyone else with Down syndrome.  I was overwhelmed with trying to juggle doctors' appointments, new motherhood, as well as update a whole slew of people.  I started to write a blog to keep everyone in-the-loop. . . only none of the intended people read The Chronicles of Ellie Bellie Bear.  BUT, I started to follow other bloggers with children with Ds and they started to follow me.  One thing lead to another and some of us became Facebook friends--which is awesome because I totally wanted to stalk, er, follow this beautiful girl; Kamdyn.  Tricia from Life is Beautiful has graciously written a Typical Tuesday post from Kamdyn's point of view.

Hi, everyone!  Here's a little peak into some things about my day.  First of all, if you don't remember, a few months back, I had hand surgery.

My arms were in casts that went all the way down to my thumbs.  Mommy thought that the one silver lining of that 2 week recovery was that I would stop sucking my thumb.  Little did she know, I am not giving up my thumb!

Silly Mommy underestimated my persistence.

After a peaceful night of thumb-sucking and possibly waking up in the middle of the night to go sleep in Mommy's bed, I wake up and get ready for my day.  On Monday, Wednesday, and Friday, I go to preschool in the morning.  I can put on my own pants and shirt if it doesn't need to be buttoned.  Mommy got me a lot of dresses with leggings, because they are easy for me to put on and pull down for using the potty.  I'm still not potty trained, but I'm working on it.

Mommy does my hair.

I hate having my hair done.  It really bothers me, and I usually cry.  Mommy usually puts it in a pony tail, because it's fast.

I like to put on my shoes by myself.  Sometimes I will even put on my shoes and sneak out the back door and try to go play.  But Mommy has to help with my shoes and sure steps, because they are tricky.  The doctor told us that my ankles still turn a lot, so I have to keep wearing my sure steps.  I don't mind wearing them now, and Mommy got "chips" from the doctor that help them not rub against my foot.  They have been much more comfortable since we got the "chips".

I also need glasses, because I am nearsighted.

Multi-grain cheerios is my favorite breakfast.

But sometimes Mommy lets me have cake and yogurt.

Other foods that I like to eat are marshmallows, broccoli, and sauteed peppers.

School is a lot of fun.  I get to play with friends, read books, do crafts and art projects.  Our class made "All About Me" books, and I like to sit at the table and look at all of the "All About Me" books.

At home, I like to play dress-up.

I like sensory play with water, sand, and rice.

I also like to paint.

My favorite movie is Frozen.  My favorite shows are Caillou and Daniel Tiger.

I also like it when Mommy takes me to the library.

The last time we went, I gave Mommy a break by not trying to escape when she wasn't looking.  Ever since I took a solo ride on the elevator that one time, she watches me REALLY close.

Some of my other favorite activities are:

Removing items from the refrigerator.

Climbing the cabinets, usually to get marshmallows or candy.

Sitting in silent protest when I'm not getting my way.

I am slightly addicted to the iPad.  I have one of these schedules to help understand when I can have time with it.

Sometimes my little sister is really pesky while I'm trying to watch one of my favorite on the iPad.

If she's bothering me too much, I will go into the bathroom and shut the door to try to get away from her.

But we have fun together too.


I also like to help Mommy with dinner.

I love my family. They are the best.

Thank you both Kamdyn and Tricia!

You can continue to check out Kamdyn's antics at:
Life is Beautiful


Follow us on Facebook!

Sunday, March 15, 2015

World Down Syndrome Day 2015 : a celebration

This little post will be short and sweet as I believe pictures speak louder than words.  This brief slide show is in honor of individuals with Down syndrome as we celebrate World Down Syndrome Day this upcoming March 21, 2015, but is also really for my daughter Ellie Marie.

Growing up, I knew a tiny bit about Down syndrome as my Aunt Peggy had Ds.  Now, having my own child with Down syndrome, I am learning new things every day - as a mother in general as well as by navigating the special needs world.  Our children are unique individuals who will become contributing members of society.  Make no doubt about it.  While today we promote Down syndrome awareness, I have learned through this whole parenting thing, that while Ellie rocks an extra chromosome, the syndrome is not who she is nor does it define her.  Ellie is Ellie and as a society, we need to be see the value of and accept all individuals of all abilities in their awesome uniqueness.

For those who just learned that your baby may have Down syndrome . . .

Tuesday, March 10, 2015

Typical Tuesday: Little Miss Hailey

Today, I would like to welcome guest blogger Michelle from The Hailey Herald.  Her daughter, Hailey, has an even more impressive fashion sense than Ellie Bear.  This is the 2nd post in my new series-Typical Tuesday.  I love seeing what a typical day looks like amongst friends as what a day in our household looks like may be different than another family's.  It gives newer parents a glimpse into the day-to-day life of an older child with Down syndrome.

A Day with Hailey
by Michelle Arthur

Being the youngest of 3, Hailey's days sometimes are not her own.  Some of them are dictated by her very active older brothers.  Between baseball, basketball and soccer, they keep the entire family's calendar booked.  Our week days are quite similar though (well...unless we are dealing with the lovely Midwest snow like we have all this winter).

I can't always tell you when Hailey's day begins.  Most days, it starts between 6:30 and 6:45.  Right before mom wakes up.  Hailey has a baby gate at her door to keep her from roaming through the house at night.  Last week, we woke to our door being slammed shut repeatedly!  She stands at her gate and exclaims quite loudly, "Bray-den!  Bray-den!"  He bounds up the stairs quickly trying to not wake the rest of the house up.  By the time I come downstairs at 7, Hailey is either in full play mode in the playroom or cuddled with her brothers on the couch.  They are deep into an electronic and don't seem to notice her curled up against them. 

Eventually, I can coax her to the table for breakfast.  She will generally eat the exact same breakfast every day.  Yogurt, waffle, fruit and water.  She will dictate that you use butter and syrup and she will tell you which fruit she wants.  Breakfast seems to be a nonstop battle recently because the boys eat and then head upstairs to get dressed.  Anytime one of the boys exits the room, Hailey believes that is her cue to leave the table.  Sigh....some days she is too observant.

She prefers for Daddy to get her donuts!
The boys leave at 7:45 and 8:15.  During that time, we convince Hailey to stop playing with the toys and dress up items she has chosen and we get dressed.  She's getting better at dressing herself, but still needs some assistance.  Four days a week Hailey has preschool.  I still drive her everyday so we head out around 8:30. 
Every now and then, she tries to convince me that this is proper attire for school!
Hailey loves school!  She gives me a big kiss and hug before she bounds in the front door.  I pick her up a few hours later. 

Singing at school
My predictable daughter asks for a snack or applesauce as soon as she tells me she had a good day.  One day after she first started school, I brought goldfish or an applesauce pouch for her to eat on the way home (busy work to keep her from falling asleep before getting home!).  Apparently, one time is enough for her to create a habit...unlike the 21 days it takes the rest of us!

She likes to look at books in the car, too.

Sometimes, we don't make it all the way home without falling asleep

Love seeing this gorgeous face every afternoon
Hailey walks into the house and has a "chat" with her bunny chair and then requests lunch. 

Telling Bunny about our day

It's hardly a request though.  It's more of a dictatorship.  She tell me "crackers, yogurt, cheese, celery, ranch, turkey and grapes".  It will vary sometimes, but she seems to want the same every day.  She will not give me any objections if I change the "menu", but I generally do not fight her if we have everything she asks for.  Ironically, when she is home by herself, I don't have to fight her to remain at the table.  Just when big brothers are home...hmmm.....  Lunch is followed with play time and if I am fortunate, nap time. 

A little playtime after lunch,

She loves dress up and her babies!

Hailey sleeps with a small army of stuffed animals.  Doc McStuffins, Chilly, Stuffy, Squeakers, Hallie, Lambie, Gabby, Boppy and her dolls, Bob and Abby.  Everyone has to sleep on their stomach...just like Hailey does.  She also sleeps with a weighted blanket.  It seems to calm her and help her stay asleep (yay for Mom and Dad!).  Her nap varies from an hour to two hours.  Some days she will open her door and bound down the stairs looking for her brothers.  Other days, she will cry at her door until one of the boys comes to get her.  I don't always see her when her brothers arrive home.  

She loves being with them even if they ignore her from time to time. 
The boys' work on their homework so we work on identifying shapes and letters and occasionally use apps on the iPad to work on letters and sounds.  She works better while the boys are doing their homework. 

Dinner varies depending on the night.  Some nights we eat as early as 4:45, but overall we prefer 6.  Most nights we eat, clean up and then head out the door for one of the boys' practices.  They aren't Hailey's favorite, but she has been getting better at them.  Some days she runs the entire time up and down the halls of the school...giggling the entire time.  Other times she will look at flashcards or a book.  It all depends on what Hailey's mood is. 

Sometimes, dinner must be eaten on the go.

She is their biggest fan!
Some days we play with other siblings at practice.
Bedtime starts at 7:30 with a bath and her medicine.  She currently takes two medicines for season allergies.  They are the only thing that seems to keep her sinus infections at bay.  I don't like to give her medicine, but she seems to have a runny nose year round if we don't.  After medicine, she asks for milk.  She will steal a snack if her brothers are within sight.  Ian has been known to hide so he doesn't have to share!  She will then tell you if she wants milk or kefir.  Sometimes she will even try to sneak chocolate milk.  She lines it all on the counter ready for you!

Here she stole someone's ice cream.
Bedtime for Hailey falls between 8:15 and 8:30.  99% of the time she lies down without a fight or disagreement.  Some nights she will tell us good night and head up the stairs when the boys head up.  Those nights, she sneaks in bed with them...hoping we will let you stay with them!  She will tell me good night and tell me to turn the light off. 

Sneaking into bed with the boys.

She didn't even make it to bedtime!
Daddy referees and sometimes works late hours.  Whenever he comes home, she will stop any of these activities and park herself either beside him or on him...for as long as he will sit still!  Hailey is a pretty easy girl, but overall she likes her schedule and it seems to keep her centered.  Older brothers change it up a little, but she rolls with it.

You can continue to follow Hurricane Hailey 
over at The Hailey Herald

A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since m...