World Down Syndrome Day

Happy World Down Syndrome Day!  Today we celebrate the lives of those with Down Syndrome.  Why today?  We celebrate today because Down Syndrome occurs when there is an extra copy (three) of the 21st chromosome, hence 3-21. Pretty cool, huh!  It’s kinda crazy the uproar that one little extra chromosome can bring.  Like that one extra chromosome some how makes a life not worthy?  It’s true, there are still people in this world that don’t believe that people with Down Syndrome’s lives matter.  In fact, in the US, the termination rate for those mothers who get a confirmed diagnosis of Down Syndrome is about 75%.  That’s a lot of babies not even given a chance, all because of one tiny chromosome.

 

Why we celebrate WDSD

Those alarming statistics are exactly why we still have to continue to celebrate this day.  It’s unfortunate really, that we even have to have a day like this.  The truth is, I’d like nothing more for my child to be treated like any other child and not need a day that is just about them.  But the reality is, is that there is still so much work that needs to be done.  We celebrate this day to bring awareness to Down Syndrome and to educate and advocate for our children and adults with Down Syndrome.  We have to celebrate this day so that my child can grow up in a world that accepts her differences and her challenges and loves her anyway.  Celebrating this day is about showing the world that people with Down Syndrome are much more like the rest of us than they are different.  It’s also showing the world that our differences are what makes us each unique and wonderfully made.

Is raising a child with Down Syndrome Challenging?

I’d be lying if I said that raising Stella doesn’t come with challenges. It’s hard having a child that is non-verbal.  Stella has the same needs and wants as other kids her age but she has a much harder time communicating that to us.  Imagine that for a minute!  What if you were sick, had a headache, were hungry, sleepy, scared, just wanted to go home, etc but you couldn’t tell anyone.  How would you react?  Cry, Yell, get angry, kick, scream, run, lie down… That’s hard on all of us.

But when I really sit back and think about the challenges that I go through with Stella, it is much more about other people.  It’s about the expectations or lack of expectations that others put on her.  I’ve gotten use to the stares and random snide comments made by other kiddos or even adults, for the most part.  Currently I’m finding the pre-judgment based simply on her diagnosis a little hard to swallow.  The fact that people still think that she needs to be segregated from her peers, in school and extra curricular activities is like a punch in the gut.

Here’s the hard truth, Stella and all kids, for that matter,  will only live up to the expectations that you/society places on them.  If you put my six year old in a dance class with 3 year olds because she can’t quite keep up with the other six year old, guess what she will do?  Yep, she will act like and do what a 3 year old does.  But if you place her in a class with other 6 year olds, she will at the very least, try to keep up with them and do what they are doing.  And if she isn’t doing exactly what the other 6 year olds are doing, why the hell does it matter?!  Why should we expect all kids to learn and act in the same manner? Learn to teach to the individual child!

Advocate like a mother

Being an advocate for Stella is the most challenging part of raising a child with Down Syndrome.  It is mentally, emotionally and physically draining to have to constantly prove my child’s worth to others.  I’ve realized over the last 6 and a half years how much I truly took for granted raising my “typically developing” boys.  Side note: I hate those words “typically developing!” What the hell is typically developing anyway!  We are all different! Anyway, I digress.  You do take things for granted, like getting to choose what school your child will go to, which soccer team they will be on, who will hire them when they get older…

What I want is for all people to see Stella’s value.  I want people to presume competence.  My wish is that we didn’t have to have a special day (other than her birthday) to celebrate her.  Instead, I wish that she was seen and accepted like any other child.  What I would love is to not have to fight and advocate for her to receive the same education that her brothers were able to get so easily.

Stella is loved and accepted by so many.  We are beyond blessed!  But there is still work to be done!  So, instead of getting angry, I’m just going to keep on educating, spreading awareness and advocating for her.  I will push through the tears and heart break and show the world what she is capable of when treated with respect and presumed competence.

To the mom that just received her child’s diagnosis

I’ll never forget the day that we received our daughter’s Down Syndrome diagnosis at just 19 weeks pregnant.  There are so many things that I wish I had known then as we went into emotion overload during the following 3 weeks.  So, I decided to write a letter to the mother that is just receiving her child’s diagnosis in hopes that it will help relieve some of the emotions that I am sure she is feeling.  This is my perspective from when I received Stella’s diagnosis but maybe yours is different.

To the mom that just received her child’s diagnosis, I know that you are heartbroken beyond words.  

You feel like you’ve just received the worst possible news.  You heart breaks as you realize this is not the child that you dreamt about having.  The child that you always planned on having, was going to live a wonderful, happy life full of adventure, playdates, the occasional tantrum, school, dating, marriage and even having a child of their own one day.  You’re heart is breaking as you think of  your child missing out on any one of those things.  You cry because now all you see is your child growing up and being picked on and teased for being different.  You are sick to your stomach as you imagine the therapies and doctors appointments that she will have to endure just to do the basic things that other kids do.  The tears won’t stop  as you grieve the loss of what you thought you were getting.

To the mom that just received your child’s diagnosis, I know you are angry.  

You feel betrayed and you want someone to blame-maybe your husband, maybe the doctors, maybe yourself.  You are angry with God for letting this “happen” to your child.  It’s not fair!  You’ve done everything right!  You are a good person!  Why is this happening to you?!  You want to scream, kick and cry, IT’S NOT FAIR!

To the mom that just received your child’s diagnosis, I know you are scared.  

You have no idea how to raise a child with different needs.  You don’t feel qualified.  You’re not strong enough.  How can you possibly be a mother to this child?  God must have made a mistake, He chose the wrong person!  What if she/he doesn’t walk, talk, make friends… What if people make fun of her?  Can you handle all of that?  There’s no way you are equipped to raise this child!

To the mom that just received your child’s diagnosis, I know you are overwhelmed.  

You are feeling every emotion possible and feel like your heart may explode. I know you want to run away and hide.  Crying one minute and screaming the next, I see you.  You are full of anxiety and worry about your child’s future and your ability to raise her.  The pain and overwhelm is almost too much to bare.  You think, how can I possibly handle all of this?  Please, let this be a dream.  Please, take away this pain.

You’re going to be okay

To the mom that just received your child’s diagnosis, you’re going to be okay.  I know your heart is broken but I promise that soon, your child will fill it with so much joy.  The moment you lay eyes on her, you will know everything is going to be okay.  You will laugh more than you cry.  You will love harder than you ever have.  Your heart will break over and over again but it will also heal over and over again.  This child will show you what unconditional love really looks like. You will learn to be strong because she will teach you.  She will laugh, she will love, make friends, throw tantrums and be happy and so will you.

To the mom that just received your child’s diagnosis, you’re going to be okay.  I know you’re angry but it will subside.  The anger will soon be taken over by overwhelming love and joy.  You will let the blame go and accept that this is God’s plan and He always knows what He’s doing even if you don’t.  The anger may come back at some point, but when it comes it won’t stay long.  You will learn how to let it go and focus on the wonder that is your child.

To the mom that just received your child’s diagnosis, you’re going to be okay.  I know you are scared but you’ve got this!  You are not alone!  There is no greater community of mommas than the mommas of children with special needs.  We’ve got your back!  You will face some scary times but you will overcome them and so will your child. In fact, she will likely teach you how.  No one knows how to raise a child but we all figure it out as we go. This child will be no different, you will learn as you go.  And what a teacher you have!  I know you think you can’t but you can handle this!  And when you feel like giving up, call on your tribe!  We will be there!

To the mom that just received your child’s diagnosis, you’re going to be okay.  I know you’re overwhelmed.  Being a mother is the most overwhelming job in the world but it’s also the most rewarding.  It’s okay to feel this way.  Be sure to take time for yourself on this journey. Rest, get a massage, go out with friends, exercise, take a long bath… take care of you.   You don’t have to be a perfect mother and you won’t be.  Accept that and love yourself anyway.  The joy will always outweigh the pain.

You’re going to be okay!

World Down Syndrome Day- See me for me

World Down Syndrome Day

 

Tomorrow, March 21st,  we will celebrate World Down Syndrome Day therefore I felt compelled to write something about Down Syndrome.

What is World Down Syndrome Day

What is World Down Syndrome Day and why do we celebrate it?  For me, WDSD is about educating the community about Down Syndrome, raising awareness and acceptance.  Yes, I will also celebrate my daughter and her friends that sport an extra chromosome but what’s really important to me is to help people to understand that people with Down Syndrome are more alike than they are different.

Receiving our diagnosis

When we first received our DS diagnosis, it was devastating to say the least.  I remember having many conversations with God, telling Him that He had picked the wrong mom for this child.  Though I already loved her, I was certain that I was not equipped to raise a child with special needs. I was unable to see the good in this situation.  I had been taught, like so many of us, in society, that having a child who is “different” is somehow bad.  After all, that is why they test for it early in pregnancies, right, so that we can “decide” to abort when we get the devastating news.  That’s why the doctor looked at me with his sad eyes and told me “I’m sorry”  when he gave us her diagnosis.

Sorry, sorry!!!??  I’m the one sorry, sorry that he never had the chance to meet my daughter and see how wonderful she really is.  I’m the one that is sorry, that he was never educated about all the things that our children with Down Syndrome are capable of. What did have to be sorry about anyway?  Sorry, that his years of education didn’t teach him to have a heart, to see the good in people, not the diagnosis.

Nothing Down About it

Heres’ the thing, Down Syndrome is not a bad thing.  What’s unfortunate is how others see people with Down Syndrome.  They see a diagnosis.  What they see is different.  They see the things that they can’t do.  How would you feel if someone looked at your typically developing child and said, Oh it’s, taking him a bit longer to learn to walk, he’s probably never going to live on his own.  Oh, he has brown eyes, I’m sorry, he’s probably never going to go to college.  Oh, her speech is a little delayed, she’s probably not going to be able to get a real job.  Red hair, uh oh, we are going to go ahead and separate her from her peers because she is a little bit different.

That may sound absurd to some of you, but that’s what it feels like when people try to predict my daughter’s future based on an extra chromosome.  I could not predict any of my children’s future at 5 years old.  My two typically developing teenage boys are not anything like I thought they would be when they were 5.  There is no way to predict any child’s future at such a young age.  So, why limit them?

Fighting for inclusion

It’s beyond frustrating to me as a mom that I am already having to fight for my child’s education and for what I know is best for her.  I’m not in denial about what she can not do but I choose to focus on what she CAN.  And that is what I want the world to focus on.  We are all different and we all learn at different speeds, different levels and in different ways.  That doesn’t make one person better or worse than another.

Separating children with Down Syndrome from their “typically developing” peers only reinforces that they are “different.” How can I raise my daughter to believe that she is equal and deserving of the same things as everyone else, when the “system” continues to want to separate her.  And don’t we all know that children learn best from their peers?  So, essentially by separating her, you are limiting her education.  And throwing her in with her peers for Physical education, music and art is NOT enough!

I can’t help but wonder what would happen if I never put Down Syndrome down for a diagnosis for her when entering school.  If she was just a typical student who was falling behind.  No label, no diagnosis- how would she be treated?  Yes, I know she’s also non-verbal but that doesn’t mean she can’t communicate.  She happens to be very smart and capable.  What happens when you have someone come to a new school and speaks another language?  Would you place them in a classroom with others who do not speak the language?  No, You find a way to communicate and help meet their needs.

A mother’s wish

On this World Down Syndrome day, what I want more than anything, is for the world to see my daughter and others with Down Syndrome for who they are, not a diagnosis.  What I want is for society, the school system, educators, and all people to stop trying to predict their future and to meet them where they are. Ultimately, we all just want to be loved and accepted for who we are.  I want my daughter to always be proud of who she is because I sure am!

World Down Syndrome Day

 

 

How to treat a parent of a child with special needs

I made a Facebook post the other day that touched on the struggles of raising a child with special needs.  Sharing the hardships of parenting is a difficult thing for me to do. It’s uncomfortable for me to be raw and show emotions in front of others, for one. I tend to be more of a closet emotional mess.   But mostly, I’m always afraid that by sharing my fears, doubts and overall difficult times, that people will begin to feel sorry for me.  That is the last thing I ever want from anyone.  I’m certainly not sorry, not sorry about any of it!

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My emotional rollercoaster

Yes, being a mother of a child with Down Syndrome is hard!  Adding some of Stella’s other issues: Sensory, stemming, behavioral, being non-verbal, etc can make it even more difficult.  There are days when I want to crawl into a hole and just cry.  Some days I’m angry at society and their views on people with Down Syndrome.  There are times when it infuriates me that I have to fight so hard for her to get the same education that her peers are getting. Most days I’m physically and mentally exhausted.

I can get very discouraged and sad because she has to work ten times harder than the other kids her age, just to do everyday things.  Once in a while I even get jealous, not because I wish Stella were different.  I get jealous of the parents who can take their child to a birthday party and hang out with the other parents while their children all play together.  The parents at the park who can sit on a bench and check their Facebook feed while their kids are off playing on their own, I was once that parent- not anymore.  I get sad when I see Stella wanting to play with other kids but unsure of how to do it when she can’t talk like they do or even do what they do.  I wonder if she is sad too.

But I’m not suppose to say these things out loud.  People may think I’m ungrateful or judge me as a mother.  I’m not suppose to compare my child, her journey with others.  I know that!  But, I’m human and it happens even when I try to fight it.  And I totally beat myself up when I do start to compare.  I know that Stella will do things when she is ready to do them and I don’t need those reminders from parents of typical developing kiddos.

When I have those thoughts, it’s not because I wish she were different.  She is exactly who she is meant to be and I’m okay with that 99% of the time.  So let me have my 1% where I feel all the feels and if I need to vent or share those feelings, let me.  But don’t feel sorry for me!  Don’t judge me!  Just listen to me! Know that raising a child with special needs can be lonely.  Know that sometimes I just need an ear to listen with no commentary.  Never forget that I love my child unconditionally.

How you should respond to parent of a child with special needs

Want to know what you should do when one of your friends is complaining, crying, screaming, or just sharing their feelings about their child with special needs?  How do you treat a parent of a child with special needs?

  1. LISTEN!  Do not judge!  Do not give advice!  Do not try to make it better!  Just LISTEN!
  2. Offer to help– You may offer to babysit though she probably will not accept it. She will appreciate the kind gesture.
  3. Give her a break-Take her out for a drink, we all need a break sometime!
  4. Give her a hug- help release those endorphins!
  5. Check in– Call every once in a while just to say hello and check in.
  6. Be Inclusive– Include her outing or events with and without your children.
  7. Praise her– Tell her she’s doing a great job!
  8. Ask questions– we love to talk about our little ones!
  9. Treat her normally-Don’t feel sorry for her, don’t act weird around her, act like you would around any other parent
  10. Be empathetic- “I bet that is a hard decision to make.”  That sounds like that must be hard.  How can I help?”

Always grateful

If you really know me, you know how grateful I am that Stella is mine!  Everyday,  I feel an overwhelming sense of joy and love for that girl!  Not a day goes by that she doesn’t make me smile, laugh or want to just squeeze her cuteness!  She has changed me in a way that only she can.  I want to be better because of her.  Because of her, I want to help create a better world for her to grow old in. There is no way I would ever change her but I have every intention on changing the way others see her.  So, I ask you to be mindful, be compassionate, be a good friend, and think before you speak.