Wednesday, October 31, 2012

31 for 21: The Medical Community, Down syndrome And Dr Julia Kinder

I couldn't think of a better way to close Down syndrome Awareness month than by highlighting a shining star within the medical community. Most of us have heard of Dr. Brian Skotko, and Dr Pueschel. They are both huge names within the medical community. I have had the pleasure of meeting both gentlemen. Dr. P is Em's specialist and raised a son, Chris, who had Ds. Brian has a sister with Ds and does us a wealth of positive advocating within the medical world.

 But today's post is about Dr. Julia Kinder. 

She is a wife, mother, doctor, and for lack of better wording... one of us. Her beautiful daughter Ella was born with Down syndrome!

Since the birth of Ella , Dr. Kinder has been on a mission to change the way doctors are educated when it comes to delivering a diagnosis of Down syndrome to parents. She admits that doctors are not adequately trained. 

" My medical training did not prepare me for understanding what it would be like to have a child with Down syndrome or how I needed to care for her."

 Right now doctors are not receiving enough education. They do not  fully understand Down syndrome and most still have very outdated and bleak takes on it. Most of us already have experienced first hand the lack of knowledge within the medical community. Unfortunately, doctors not always but most often, paint a very gloomy future for our children. 

My own experience was not good at all. I was pegged as a challenging patient because I asked a lot of questions. Looking back now, I can see that I made my doctor uncomfortable because she did not know how to answer my questions! And how could she, if she herself wasn't trained properly . How could she give me hope if Down syndrome was a mystery to her? 

I was consistently told that even though the baby looked good, during ultrasounds, something catastrophic could still happen! Talk about being a bubble burster! I left every doctors appointment confused and scared.
No wonder 9 out of 10 woman choose to abort their child! 

Now, imagine what it would be like if our doctors understood Down syndrome. Imagine how a diagnosis would be delivered! It would not start with the words "I'm sorry" but instead , CONGRATULATIONS!!!" And , "It's going to be Okay!!!"

 I never once heard those words from my doctor.

This is Dr. Kinder's mission. It's a mission that could save the lives of countless babies! Ease the fears of parents and change the hearts and minds of thousands of new doctors!

Dr. Kinder currently has a petition in place to require complete education on Down syndrome for third year medical students. I've signed it and I think advocating for this petition on this last day of October is very fitting! I'd love to see our beautiful community rally together and  add a boatload of signatures!

Click here to  read and sign the petition, and please share. Everyone should know about this. It is our responsibility as parents of children with Down syndrome to pave a better path for others. We know how amazing our children are. The medical community should know too!!!

Education is the key! 

Updated and accurate education must be mandatory to make a difference!

Please sign!

And after you sign "like" Dr. Julia Kinder's facebook page, Upside of Down.

She is truly a shining star, doing great things for our children!


Tuesday, October 23, 2012

31 for 21: The IEP

This picture has nothing to do with this post or IEP's in any way. Em just thought she looked cool and wanted me to post it.

I . E. P.   Individualized Education Plan
Three little letters that can send shivers down the spine of any parent that has ever had to endure one. I've been terrified of them since Em was only a few months old and I learned that one day I would have to sit with a group of people who would have a lot of interest in my daughters education and what she would and would not receive. 

I've heard horror stories about lawyers being needed to guarantee the child got what was legally theirs. Moms being driven to tears by uncompassionate and all to often ignorant teachers.

I would get a stomach ache just thinking about the day it would be my turn.

Then the day came, and I waited for the bomb to drop. I waited for something to piss me off. 

Nothing bad happened. Em got all her therapies, she didn't lose anything, she was in the best school for her needs. Her classroom has both typical kids and kids with special needs. Her team of therapists are from heaven and her teacher is an angel. 

Today was her IEP for the upcoming year. We reviewed where she was last year, where she is now and where we want her to be by the end of the year.

All this was dicussed in between fits of laughter from her teacher, ST, OT and PT as Emmie had them rolling on the floor and wiping tears from their eyes. They all absolutely adore her. 

I know parents worry about school and IEP's and getting all your child deserves and is legally entitled to. 

And a lot of the time it's a battle but sometimes it all just falls into place. 

So there is hope for a great IEP day. 

Do I worry about next year when she will have to move on to another school? You bet your bottom I do. 

There are two schools in my neighborhood. I'm not sure which one she will have to go to, but one has contained classrooms... that's not happening! She's not in one now so we are not going into one. There may be a rumble down the road for us, but today we just enjoyed a really fun IEP day!


Monday, October 22, 2012

31 for 21: 1,2,3, FOUR!!

The absolute miracle and wonder of this child never wears out. Each day she brings us joy overflowing, and endless thanks to God above who knew we needed her more than the air we breath.

Today Miss Em is four! This little pint of peanuts is the glue that holds us together. She is the rock and she is the one we all go to when we are feeling weak. 

I don't know what we would do without her and never realized how incomplete all our lives were before her.




Thursday, October 11, 2012

31 for 21: And they danced...

I already have tears in my eyes and I've barely started to write. As most of you know my oldest two girls dance. They are beautiful and I love to watch them. Emilia also dances and I cannot wait to get her into a dance class!!!

Last night the school/ company my girls dance for had an amazing event. It was they're second year doing this and it just keeps getting better. It's called Together We Dance. 

Dancers in the top of their field are invited to take the stage together in one amazing and breathtaking performance. 

Last night we had these beautiful dancers to blur our minds of the daily stresses and take us away to places we could never get to on our own. I sat spellbound and honestly, I don't think I exhaled for two hours.

My daughter Olivia performed, and after her performance, she from the wings and I from my seat, secretly texting, "OMG", "Did you see her" , and "this is amazing"

We watched Daniel Ulbricht, from NYC Ballet, jump like no other. I actually gasped out loud at his leaps. And wondered how long he could just linger in the air.

RI native Greta Hodgkinson and now prima ballerina at National Ballet of Canada , brought me to tears not once but twice with her grace and beauty.

Adiarys Almeida, Boston Ballet, left me and my daughters with our mouths hanging open. She danced Pas de Deux from Don Quixote. I've never seen anything like her.  


And we even had Beckanne Sisk, Ballet West,Utah, from the show Breaking Pointe!  She blew us away with her performance , which  happened to be one of my favorite variations, pas a deux from Esmeralda. I could have watched it over and over again.

 The applause was heavy and long and deserved, but the beginning of the show, topped it ALL!

You see the very first dance of the night belonged to the adaptive class that Festival ballet has. Eight dumplings all sporting an extra chromosome opened the show ! They're song, Let's Dance, got the night started. They were enchanting! They knew their marks, they looked fabulous, and not a bit of stage fright in any of them. They smiled and waved and corrected each other (I flippin love that). Every one of them enjoyed their time in the spotlight and when the music stopped the endless applause and whistles began. The audience showed their delight and the children inhaled it! They bowed and blew kisses and they owned that stage.

They danced last night with the best of the best. Thank you Festival Ballet Providence for making that possible!!! Thank you for putting our children out front where they belong! 

Monday, October 8, 2012

31 for 21: APPLES!

Everyone loves apples!!!!!

And apple picking!

And bumping into some dear, friends!

Now that's good for the soul!!

Friday, October 5, 2012

31 for 21: From Em

It's me Emmie! Mommy said her head was about to explode.... I have no idea why!

Anyway, I thought I'd do her a favor and post for her today. I know she's trying to post something about Down syndrome everyday. 

So, today I want everyone to be aware that yes I have Down syndrome, yup I drive my mom bonkers sometimes, and don't  I make a great monkey face???

Mom says that Down syndrome isn't nearly as scary as she thought it was going to be. I think that's a good thing because I don't think I am scary at all,hehee!

See ya, I'm going to go see if mom's head exploded yet.  

Thursday, October 4, 2012

31 for 21: Not Everyday is a great Day! And That's OK!!

Some days are picture perfect, ya know? Those days where everything goes smoothly, or those days that are so much fun you just don't want them to end.

But not every day is like that.

Not every day with Down syndrome is like that.

And for me, today is one of those days that I'm not really getting that  warm and fuzzy feeling about.

As lucky as I am that Em was born without any health issues, sometimes I /we forget she was born with delays.

 And today those delays are kicking my butt!

Today has been exasperating and frustrating and has put both of us in our corners crying at one point.

Some days, there is no pause between one fiasco, disaster, misunderstanding, miscommunication or absolutely no communication between me and Em. Some days it's just a constant battle of, Discipline - VS - She just doesn't understand.

Do I put her in the corner or put her in my arms.

Do I walk away for a few minutes, or yell, and regret it immediately...

This post is me walking away for a few, to collect my thoughts. To get a few minutes away from the screeches, the objects flying around, like chairs and sippy cups, dishes, toys and videos and anything not nailed down.  Em's a thrower and some days are much worse than others. We've all learned to tuck and roll when she starts throwing.

This post is my time out. Because honestly we all need one once in a while!

The thing with days like these is just that.... they're days. Moments that pass. Thank God

Oooo, I'm in trouble today!!!

 That's right Em , you are in trouble today.And that's OK!!!
Tomorrow is another day :)

Wednesday, October 3, 2012

31 for 21: Potty Training

Two of my least favorite words are "potty training"! Why? Well, for starters I just really don't like doing it.  It was okay when my first, Olivia, came along.  I mean everything is new and fun with your first. And then Sophia came along and , at least I knew what I was doing.  By the time Bella was born potty training was getting a little old. I guess I turned into a procrastinator because one day I just found her on the big girl toilet. Guess she was tired of waiting so she trained herself... what a good girl!! Then came the boy!!! Good Lord, I think he was trained the day before he started preschool!  Talk about calling it close!

Then came Miss Em and well, what can I say! This child gives a whole new meaning to the word frustrated!

We have the potty books, the potty video, the sign for potty, the potty chair, and the potty dance. We just have no potty!!!

Oh, we have potty, potty on the kitchen floor, the living room carpet, we have potty beside the potty chair, and we occasionally have some poop too... :(

Miss Em can sit on the potty until it's part of her cute bottom, and nothing. She sits on the potty before her bubble and it never fails , as soon as her big toe hits the water she pees! "sigh"

I, on the other hand have completed Miss Em's potty training course with flying colors! She comes to the potty with me and signs potty and we wave goodbye to it. And I can tell she is so proud of my accomplishment. We wash hands and she leads to the way to our next adventure.

I know it will all come when she is ready. Just like her words!!! Which by the way are COMING, beautifully!

And I know she won't be wearing diapers when she twenty. But you know what. If she is, she is. It will be an honor to care for her in which ever way she needs it, for all the days of my life!

Here she is passing on her potty wisdom to someone who obviously needs help!

Oh Miss Em we love more than words can say!!!!

Tuesday, October 2, 2012

31 for 21: True or False

Day number two and I'm still in! LOL
Crazy day of running everywhere! Anyway here's a true or false question.

A lot of people I meet usually assume that because Emilia has Down syndrome that she is always happy and that as her mom I won the prize, grabbed the golden ring and hit the lottery with a child who smiles constantly, never gets upset and just goes with the flow. 

So what do you think? Is that true? Are people who have Down syndrome always happy???



Nope, Miss Em does not wear a perpetual smile. She gets mad, and has some whopper tantrums. Just like any other kid.

BUT ...

She rebounds quickly!

Monday, October 1, 2012

31 for 21! DAY 1 ...ALREADY??

Here we go again! October is here and that means one... I mean two things. The first is that in 21 days my Dumpling, Miss Em will be turning FOUR!!! That is truly unbelievable! Can't even begin to try and figure out where fours went to so quickly. All I know is that we are a billion smiles and a gazillion laughs wealthier!

She can't believe it either!

The second thing is it's Down syndrome Awareness Month!  I will be attempting to post every day during the month. I know you regulars know how it works and will be posting with me!!  There's always a chance to reach out to the new moms and families, or the people who don't know about Down syndrome. People who still think it's an awful fate...hehehe. It's not!! Surprise!! 

Stick around and I'll show you how fabulous my daughters life is!!!!
And how even more fabulous our lives have become because of her!