Friday, September 9, 2016

In Full Swing

October is approaching quickly, which also means Down Syndrome Awareness Month is approaching quickly!  I've always made sure to make a big deal about the month of October, especially on my blog, because educating people about Down syndrome has always been so important to me.  Last year I didn't write a single blog post.  Honestly, I just don't know what to write about anymore.  I've written so many posts about Down syndrome that I feel like I'm just beating a dead horse every time I talk about it.  Then I run across someone who is STILL using the R-word! OUCH (insert stomach punch)  Or I have people questioning the fact if Sophia should be in a general education classroom along side typical peers.  

I definitely feel like Sophia has changed minds and hearts of so many in the past seven years.  She is by far her biggest advocate.  She shows people every day that her life matters.  She fights for what she wants, and loves unconditionally.  She learns by example, and passes judgement on no one.  She's taught me so much by being my daughter.  

Eight years ago, I didn't know anything about Down syndrome.  In fact, most people with special needs made me somewhat uncomfortable to be around.  I didn't know what to say or how to act.  Sometimes I wasn't sure if they would be able to understand what I was saying if I talked to them, and I knew I wouldn't be able to understand them when they talked to me. It was easier to just ignore my surroundings, smile and move on.  WHAT A FREAKING IDIOT I WAS!  I hate admitting that before Sophia, I was such an ignorant asshole.  I hate admitting that all through school and even into adulthood, I used the R-word and never gave it a second thought that I was disrespecting and devaluing a whole group of people.  I just didn't know.  My intentions were never mean, but I had never been educated.  

Knowledge is power.  The more you know about something, the more open minded you might be about it.  That's why it's so important to me to educate anyone that will listen!  I want my daughter to be surrounded by people who understand, and are willing to accept her for exactly who she is.  Sophia is a seven year little girl, who wants to be included.  She wants to feel accepted and loved.  She wants people to listen to her, even when her voice is hard to understand.  She wants to be respected as a person who is doing the best that she can.  Sophia is very much like you.       

Sunday, March 15, 2015

Focusing on the ABILITY in DisABILITY

March is Disability Awareness Month.  March 21st is World Down Syndrome Day (WDSD).  It's a month to CELEBRATE!!!

We all have strengths, things we are good at and excel at.  We all have weaknesses, things we need to work harder on and improve in.  We ALL have both of these things.

Just because a person is really good at something that someone else isn't so skilled in, does that make either person better, or less than, the other other?  One person's strength is another person's weakness.  It's a great way to learn from one another.

As a society, we tend to look for things that are "wrong" with others, in a way to make ourselves feel better about our own weaknesses.  If someone doesn't know the answer to a "simple" question, it makes us feel smarter then they are.  If someone is heavier then you are, you feel better about your own self imagine standing next to that person.  If your kid is sitting quietly in his/her seat, while another kid is running around yelling and misbehaving, you feel like the better parent for "being able to control" your kid when someone else can't control theirs.

We need to stop seeing people for their weaknesses, and look deeper for their strengths.

Since this is a post about Disability Awareness Month, and WDSD, I wanted to focus on some of Sophia's strengths, or ABILITIES, that she brings to the table every day.

Sophia has the ABILITY to bring a smile to my face, even in the saddest of times.  Her innocence, and genuine sweetness, melts my heart to the core.

Sophia has the ABILITY to learn new and exciting things.  Even though it might take Sophia a little longer to learn new things, she can, and does, learn new things all the time!  Some of her recent accomplishments are; being potty trained, reading sight words, and becoming a more responsible five year old.

Sophia has the ABILITY to dance.  She has loved music since she was a baby.  Give her a nursery rhyme, she may give you her "mad face", but turn on some Taylor Swift's "Shake It Off", and she may just rip off her shirt and start bustin' a move!

Sophia has the ABILITY to love, unconditionally.  If she cares about you, she will come back to you over and over again, no matter how poorly you might treat her.  She doesn't judge others, everyone is equal in her eyes.  She forgives so easily, it's as if it never happened in the first place.  She will love you with her whole heart and soul today, tomorrow, and forever.

Sophia has the ABILITY to make friends everywhere she goes.  She's so darn cute, it's hard not to notice her.  She's also extremely friendly,  She says "Hieeee!" to everyone we pass, and isn't afraid to approach someone and give them a needed rub on the arm.  She just knows how to make people happy.

I could go on and on about what Sophia CAN do.  Some of her strengths are easy to see, some you have to work, invest some time in, in order to see them.  And of course she has her weaknesses too, but those weaknesses don't define Sophia, they only make her stronger.

Remember during Disability Awareness Month, and every other day of the year, we all bring important things to the table of life.  Just because one person's strength is another's weakness, we are all equal in deserving respect.

Saturday, March 7, 2015

The Hill I'll Die Upon

In a recent post I read online, this was some advice one sister/mom received from her brother.......

"'The hill you die upon.'  He was saying it in regards to a person we both knew who had started a Facebook scuffle.  The topic?  The "R" word.  On my own personal profile page.  One person just could not wrap his head around the idea that this might be offensive, demeaning and just plain hurtful, despite my own and others' request to drop it.  I will never forget talking about it later with my brother, and how he just summed it up perfectly.  'That's the hill he wanted to die upon? Really?'  In case you haven't figured it out by now, autism is one of the hills I will do battle on.  Spreading the word to end the word is another."

This post got me thinking about my own hills.  Throughout my life, I've went to "battle" over things, that in reality, meant nothing to me.  I really could have cared less if I won some of those battles, but that good ole pride just kept me going back for more.  I wanted to be right.  I wanted to win.  I wanted the last word.  But for what?

Thinking back over the years, it's almost comical to think about some of the petty things I let get to me.  I've realized as I get older, there just isn't a lot of things I'm willing to fight tooth and nail for.  I don't need that drama in my life.

With that being said, there are a few things that I will never stop fighting for.

I will do battle on that hill for Down Syndrome Awareness.  I want as many people as possible to be rightfully educated about individuals with Down syndrome, and that a diagnosis is not a death sentence, for you or your child.

I will do battle on that hill for acceptance and inclusion.  In school and in the community we live.  My daughter has a right to live, learn, grow, and thrive alongside everyone else.

I will do battle on that hill to spread the word to end the word.  My daughter deserves respect.  She deserves to be looked at as an equal, not a punchline to someone's pathetic joke.  When you make a rude comment referring to someone, or something, as being "retarded", or "slow", or "special", or "riding the short bus", you're disrespecting my daughter.  You're disrespecting hundreds of thousands of other people who have an intellectual disability.

We all have our own battles to fight.  These are mine.  These are the hills I will die fighting on, because they're that important to me.

Choose to be kind.  Choose to be open minded.  Choose to be respectful.  Choose to be accepting.  It's your choice, make it count.    

Tuesday, March 3, 2015

Growing Up

Another post I wrote while waiting at the doctor's office.....apparently that's where I get my motivation to write!

Babies grow up so fast.  Before you know it, your precious little bundle of joy is walking, talking, and going off to school.  It all happens at warp speed, leaving the parents thinking, when did my baby grow up?

I've experienced these feelings, going on twice now.  Developmentally, everything happening right on time, or early.  Leaving me feeling like my baby turned into a toddler then a young kid, overnight.  Sometimes I miss those precious early years.  The unconditional love you get.  The innocence of never being exposed to everything that's wrong with the world.  The acceptance of anyone  and everyone, because you don't know what it means to pass judgement on others.  The ability to "turn the other cheek" and forgive, even when you shouldn't.  The beauty of little kids, is amazing.

One of my children has lead me down a slower path, shown me the scenic route, on this long journey of raising kids.  I've gotten to experience the baby years a little longser, and the toddler years too.  Even the terrible twos, and threes, and fours, and fives.  Some days I'm thankful for the extra time I get to cuddle, my not so much a baby anymore.  In the hurry up and go, go, go of life, I feel thankful for the reminder to slow down, and that not everything has to be exactly like we expect it to be.  But there are days too where I wish we were done with some of the stuff that at five years old, you're suppose to be over with.  Because even when I'm being reminded to slow down and appreciate the beauty of things happening in their own time, I'm also reminded that I'm an impatient person.  I just want things to be easy, all the time.  I mean really, that's why I had kids, to make my life easier.  

Then "it" happens.  That thing that I've been wishing we would overcome and be over with, is gone.  Another skill, milestone, conquered!  And that feeling, in that moment when you realize, she's growing up, is AMAZING!  I am so proud, every day.  There are GREAT things in store for this little one's future, and I can't wait to see it all unfold.

Sunday, February 22, 2015

A Burden

I wrote this post a few months back, waiting at the doctor's I guess I'll post it now.

I have never considered Sophia a burden.  She has never been, not wanted.  A pain in the butt at times.....yes.  But never something that if I could do it all over again, I would change things.

I have felt lucky, blessed, since the moment I laid eyes on my sweet little girl.  I loved her, unconditionally, and wanted to protect her....then, now, and forever.

Within the past 5 1/2 years, I have had moments where I had to think about where my children would go if something should ever happen to my husband and me?  Would, Sophia specifically, put a burden on someone else's life should they need to take my children in?  Would they resent the fact that they were put in this position, to care for a child, possibly long term, who had special needs?  I never want my child to be a burden, to anyone, because she's not a burden at all.

When Sophia started school, I had to let her go a bit.  She was growing up and starting a new adventure.  It was hard losing some of that control over her day to day routine.  It was hard not only sending her away from me for extended hours a day, but it was hard putting her care in someone else's hands.  At five years old, Sophia needs a lot more support and guidance then your typical five year old (if you want to keep her out of trouble that is!)  She is still learning so many things about being an independent person.  But she IS learning!  She impresses so many people, each and every day.  And although she is progressing and making me so proud by all her accomplishments, there are days when I feel like I'm putting others out because they have to give extra care to my child.  There are days when I feel like my child is viewed as more of a burden then a pleasure to be around.  I never want people to feel like things would be easier, or better, if Sophia wasn't around.

So at the end of the day, I find myself "praising" others for watching over her.  Profusely thanking them, over and over again, for doing the same thing I do day in and day out, but putting them on a pedestal for doing it.  I don't feel like I should be praised because of what I do for Sophia.  I do the things I do, because she deserves my best, and because I love her.  So why do I fear that other people view my blessing as a burden?

Thursday, October 30, 2014

Is It Good Enough?

Advocating for Sophia is so important to me.  I want people to see her the way I see her.  I want people to accept her the way we accept her.  I want people to see past what's on the outside and learn about what she has to offer from the inside.

I think it's fair to say that Sophia is a super cutie!  She's petite, and has gorgeous, long, blonde hair, and dazzling, blue eyes, and a smile that melts the coldest heart.  Really, what's not to love?  But she also has a fire in her that gets her into trouble more than once a day.  She likes to test people, a lot.  She's very curious about how much she can get away with around certain people.  Depending on what side of Sophia you see, you either think she is the most adorable little girl ever, or that she is a big, bad bully.  I think most people probably think a little of both!  

As Sophia's mom, I find it safe to say that I know her better than anyone else.  I've seen the good, the bad, the great, and the ugly.  But without a doubt, the good and the great outweigh the bad and the ugly at the end of the day.  Sophia is a five year old little girl, still trying to learn all the rules that society expects us all to follow.  And it's convincing her that she HAS to follow those rules, is what gets a little hard sometimes. 

When I look at some of the things that I post, throughout the year or just during the month of October, I always worry, am I giving out a bad impression about who my daughter is or what it means to have Down syndrome?  Instead of advocating for Sophia, am I doing more harm than good?  
There are so many possibilities associated with a Down syndrome diagnosis; from medical issues, to behavior issues, to cognitive ability.  I have to wonder, do these possibilities scare REALLY scare people?  Sometimes I think that people read about all of these issues and convince themselves that they could never handle any of that.  Forgetting that any of those possibilities could also become an issue with their typical child as well, at some point in his or her life. 

All of my kids pose challenges for me.  Jayden is demanding, and bossy, and feels like the world owes her everything (or at least her Dad and I  owe her everything).  Sophia holds the cards when it comes to behavior challenges, but I must say, Jayden gives her a run for her money some days!  And Adalyn, well she's about the best kid I have right now.....until she learns how to walk and talk!  

We've went through a lot since we learned Sophia had Down syndrome, but there has never been a day where I had regrets.  She has brought more joy and love into my heart then I could ever dream possible.  I love all three of my girls with everything that I have in me, but Sophia did something magical to my life that I never could have experienced if she hadn't been born with a little something extra.  I feel lucky to be her mom.  She has taught me so much about life and people, that I never would have known had it not been for her.