mom syndrome vs. the "shay-tards"

Wednesday, March 4, 2015

Today is the national day when we focus on spreading the word to end the use of the "r" word so it seemed like a perfectly good day to us to start a little war.

You may have never heard of the Shay Carl family, we never had until we realized our kids were watching them on YouTube. They are apparently very over 3 million subscribers popular. Basically, they are just a normal family who do normal funny life stuff and post it on YouTube.

The problem we have is obviously the use of the word "tard' in their name, their nicknames for each other and their kids, and the fact that they sell merchandise with the word on it.

It isn't the whole word. We get it. And we know he claims it all started with his apparent love for unitards (we suggest he wear them more often if this is the case) and his concern for his kids safety on the internets but their full names are all over the internets now so that is apparently no longer an issue.

According to wikipedia (which is clearly always right because if it is on the internets it is true) Shay Carl is friends with some famous people like

Dave Ramsey (seriously Dave?)
Matt Damon
Charles Barkley
and I am sure the list goes on.

Here is what we want to do. We are calling Shay Carl out. We want him and his family to stop using any form of the "r" word. We realize that this word wasn't that big of a deal not too long ago, but it is now, and as parents of kids with special needs, we think it needs to stop. Will they respond? With your help I bet they will!! is where you come in: we need everyone in the special needs community to share. Share this post. Share our video on YouTube. Tweet at them and the other famous people that are their friends. 

Use #spreadthewordtoendtheword #shaycarl #shaytards and anything else creative you can come up with!

Tag. You're it!

Thanks for letting us share,


Stop teaching your kids not to stare

Tuesday, February 10, 2015

Take 2 minutes and watch this video.

Did your parents teach you not to "stare" at people who were different? Mine did. And I believe they had the best intentions in doing so. But, what were they teaching us....... really?

Children are naturally curious, and rightly so. If we teach our kids that it is rude to look at someone who is different from them, aren't we sending them a terrible message? In the name of being politically correct or "polite" (we do a lot of that here in the South), aren't we are telling them:

"Don't look at that child because she is in a wheelchair and she doesn't want to be looked at."
{she wants so badly to be seen}

"Don't ask questions about why that little boy has brown skin and the rest of his family has white skin. That would be rude."
{his mom would likely love for you to ask because it gives her 
a chance to explain how God makes families}

"If you see a child who acts differently than you, just pretend you don't see them and go play with your "normal" friends"
{he just wants you to accept him.... even if he is different}

 "When people don't look like should just ignore them."
{isn't this the last thing we want to teach our kids?} 

Obviously I am not suggesting that we allow our kids to literally stare down someone who is different. But more often than not, the behavior we feel the need to correct is truly innocent curiosity.

Preserve the innocence of your children's eyes when they are young. Most adults I know could learn a lot by seeing the world through the eyes of a child.

Talk to your kids. Show them by example. Speak to people. Be kind. Use these opportunities to teach them something valuable. Help them understand.

But please, don't encourage them not to see.

Because everyone deserves to be seen!

Thanks for letting me share,

Dear lady in Wal-Mart. I saw you. And I saw your son.

Thursday, February 5, 2015

Last Saturday afternoon I made a quick run to the Wal Marks to get a few things we needed around the house (wine. I needed wine ok?).

I was in a mad rush because Baby Zee was sick, and when he is sick I can't get very far away or be gone for very long.

As I rushed from aisle to aisle (I did get a few things other than wine) I noticed a woman. She was tall and wearing heels and looked super fancy and dressed up for a Saturday. Then I noticed what she had in her cart.

I would guess he was between 16 and 18 years old (I am really bad at age guessing so that could be way off). He was sitting in the grocery cart and his mom was piling her things on him and in his lap as she shopped. He was very happily playing with a little plastic toy. He had beautiful brown skin and perfect almond shaped eyes.

My first instinct was to catch up with the mom and say "Hey! I have one too! Actually I have two! They are babies but still! Isn't the Down syndrome club great?" or something super cheesy along those lines. I wish we could have ID bracelets or some sort of visible indication that we are in "the club" so we don't have to do the awkward "I have one too" conversation.

As I walked behind her in the Saturday Wal Marks main aisle traffic jam fully intent on catching up with her and attempting to say something non awkward I noticed something.

As people came towards her, within a split second they would notice that she had an adult sized person in her cart. Then they would see (or I guess assume) that he had special needs. Then they would immediately look away as if they were thinking

"Oh crap. Her son has special needs. I don't want her to think I am staring at her.... or him I am going to quickly pretend I am looking at these lovely tomatoes. Look at me...looking at the tomatoes....not staring at you. Whew."

The people kept coming, and they kept doing the awkward looking away. Each and every one of them.

And then I did something dumb. I checked out and I left. I really regret not speaking to her.

She might not give the slightest crap that people were avoiding making eye contact with her. She probably is used to it or doesn't even notice it in the first place. But I still would have felt better if I had spoken to her, or at least made eye contact and smiled at her.

Guys, there are lot of people in our world who are different. Families who have adopted a child of another race. Families who have kids with special needs. Families that are big. Families that have kids with obvious medical issues. Let me clue you in on something:

You don't have to avoid seeing them. They already know they are different....and they are ok with it.

As if your making eye contact with them or their children would make them say

"that man just gave me a polite smile....holy crap balls honey did you ever notice before now that this kid we adopted is black!!???"

See people. Just like you see everyone else. No one wants to feel invisible.

Thanks for letting me share,

Those who are difficult to love (Baby Zee is HOME!)

Tuesday, December 9, 2014

I saw a quote on Facebook once and it stuck with me but for the life of me I can't find it now. I went ahead and made it look legit and pinteresty....heck maybe I said it in the first place. Who knows. It went something like this:

I wanted to give you all an update on Baby Zee, and I thought of this quote. I had planned to write about how kids "like him" can be difficult to love and then I was going to try to guilt you in to stepping up to the plate to help care for "the least of these". But here is the problem....

He is not difficult to love.

He is difficult to transport (oxygen tank, ventilator, pulse ox monitor, portable suction machine, emergency "go bag" and all his g tube stuff. Oh and a diaper bag....don't forget that part).

But he is so easy to love.

When he wakes up every morning, his eyes get wide and he studies my face for a second before his whole face (I swear he smiles with his WHOLE FACE) lights up in the biggest smile as if to say "It is you again! You are still here! You are taking care of me again today! I know you!"

Circumstances can be difficult when he is having problems, or the power goes out (that is a whole situation), or his machines are acting sketchy or he is sick. But all kids....all people have difficult circumstances. His just look a little different than most.

But he is SO easy to love.

released from the hospital!
He came home from the hospital on November 24th. Exactly 10 months after he was born and he spent every day of those 10 months in a hospital bed. Now he is with a family. People ask me often, "will you adopt him?". I don't know. Only time will tell. But I sure hope so....

because he is so easy to love.

Radko (Lili's baby), Baby Zee and Jojo

Happy Thanksgiving from the "triplets"!

Thanks for letting me share,

when being archie's sister isn't easy

Monday, December 1, 2014

I have written before about Ace's anxiety and her worrying about Archie. She worries about him so much and she has very much taken on the role of his protector. I walk a very fine line every day between wanting to praise her for always sticking up for and watching out for him, but also trying to avoid her taking on adult roles or stress that a six year old should not have to deal with.

Last year after school, I picked them both up in the carpool line every day. They would sit together and wait for me. Except for on some days if Archie was still working on something, or if he was having behavior issues, he wouldn't come out as early. And I knew as soon as I saw Ace's face walking towards my car if it had been one of those occasions. She would come out with tears streaming down her face, sobbing. Couldn't catch her breath. 

The first time it happened I was all, "what in the world is going on?" It was like slow motion as she walked to my car practically hyperventilating. Every bad thing that could have possibly happened ran through my mind. Then a teacher helped her in, and explained to me that Archie hadn't made it to the carpool waiting area yet, and she was upset and scared. Talk about a mom heartbreak.

We waited a minute and then Archie was shuffled to our car by his aide. He hopped in and immediately asked, "why Ace cry?" She couldn't talk, but leaned over and wrapped her arms around him and laid her head on his shoulder. It was as if she thought she would never see him again and was overcome with relief when she finally did. She was doing the whole gasping for air cry, so I pulled the car over and climbed in the back with them. I held Ace and tried not to let her see my own tears. Archie was beyond confused. Begging her "no more cry, please, Ace!"

That happened on and off for the rest of the year. And no matter how many times I told Ace to please not worry, she reacted the exact same way every time it happened.

She used to regularly express her fears of Archie having to go back to Bulgaria. She would cry and tell me she didn't want him to have to go back. She was always needing me to reassure her that he would indeed be with us forever. I think she understands now that he is never leaving, but every once in a while if she hears something or sees something that makes her mind go there, she will ask me to promise her that he will never have to go back.

Sometimes being Archie's sister is tough. I think siblings of kids with special needs are some of the most amazing humans there are. It is a whole different world. So much of who she is has been shaped by being Archie's sister.

Of course, I want Ace to be a kid. And to not have to worry about her brother every second. And we are getting there as they get older. Slowly but surely. It involves a lot of talking, reminding, and reassuring.  But she will always protect him and have his back. And that is okay with me.

Thanks for letting me share!

That one time when I almost puked from laughing so a funeral

Wednesday, October 15, 2014

That One Time When is a place where we want to share your stories of how your life has been impacted by someone with Down syndrome! If you would like 
to submit a guest post, just use the "Email Us!" form over there ----->

Today's post is by Vonda Weikert

I am so honored to be asked to share a few stories on this blog. When Jenny asked me to share some "hilarious Down syndrome stories" I knew it would be a piece of cake. All thanks to my son!

My son, Noah, was born with Down syndrome. It was not only a surprise, but a shock. I thought my world was over.  I thought that life, as I knew it, would be forever changed. No more good times....only struggles and sadness. I didn't think I would ever smile again, much less LAUGH. And the "make your sides hurt laughing" was surely a thing of the past.....or so I thought. Noah proved me wrong. He is 15 years old now, and the past 15 years have been some of the best years of my life. He is absolutely the funniest person I have ever met. And usually he doesn't even try! He is also handsome, sweet, compassionate, smart, witty, and awesome, but his sense of humor is beyond amazing! He was even funny as a baby.

I think the very first time I got a glimpse of his humor was around 6 months.... he would do this thing, where he would stiffen his arms and hold them straight out, along with stiffening his face and jaw. We called it his "stiffy face". He did this for years. His therapist told us that because of his low muscle tone, stiffening his arms and face made him feel strong. Whenever we'd ask him to do it, he did, because he knew it made us laugh.    

When he was around 2, I remember attending this stuffy little church for awhile. The pastor was giving his "oh so serious" sermon, and I was holding Noah on my lap, when he head butted me in the face.  In a seriously quiet church,  I made the mistake of whispering "ouch". Noah found humor in other people's physical pain, so he started loudly belly giggling and I could not stop him. The more I tried, the harder he laughed. The sermon stopped. All eyes were on us, and I began to sweat. And then, just like magic, the entire church was roaring with laughter. Did I mention these were stuffy, snooty people, who barely cracked a smile, and were now seriously LOLing? They laughed even harder when I told them WHY Noah was laughing! That was just the beginning.  

When he was 3, I had to take his tiny little self out and wait for the bus for pre K. Every single day when he returned home, without fail....I would get him off the bus, and he would run inside, whip his shoes off, stick his foot in the air and say "mommy smell"......and I'd have to smell his feet and pretend to gag and faint. EVERY SINGLE DAY through 2nd grade! And I did it.....because that giggle was priceless! Around this same time Noah's favorite phase was "I gonna puke up". Any strange smell, or anything unappealing to him, he'd announce "I gonna puke up" and would start gagging. Still, to this day, the smell of cut grass and oranges makes him want to "puke up"! 

I remember the first time that Noah realized that farts were funny. He was around 3 and we took him to the elementary school to do a discussion on Down syndrome. The first grade class didn't say much, .......until Noah FARTED the loudest fart ever while sitting on my lap. He giggled and giggled and giggled! The girls giggled and the boys fell into a heap laughing. That fart broke the ice, and all tension in the room was gone! One little boy said "he is just like me, I fart all the time". And then the hands were raised and the talking began. It was a great day. 

They told me when he was born that he would "probably never really understand humor, or understand joking or pranks". I beg to differ! His favorite toys growing up were his lifelike rubber frogs.  He carried them everywhere, made them have conversations, slept with them, bathed with them, ate with them, always. So one day when he walked up to me and sat one of his frogs on my shoulder I didn't think anything of it.......until it made a noise, and I turned my head to find a huge freaking LIVE warty looking TOAD sitting there. I screamed and flopped it on the ground and he laughed for hours! He KNOWS what a joke is! 

Another hilarious moment..... a time that I came THIS CLOSE to puking because I was laughing so hard, was at a funeral. Yes, there can be humor at funerals when Noah is around. It was a military funeral for my husband's uncle Kenny. Noah was sitting at the end near the aisle. It was extremely quiet. The men walked in with the flag and all at once the man yells some command at the top of his lungs RIGHT BESIDE NOAH and he jumped a foot off of the pew, grabbed his chest and yelled "WOAH.....give me a heart attack". I thought I was going to absolutely die. I have never in my life had to laugh that hard, when I knew I shouldn't! I had my handkerchief over my face and I was ugly laughing so hard I thought I was going to get sick. I looked at my daughter Halle, and she had laugh tears running down her face and was almost blue because she couldn't breathe. I tried to think of anything and everything sad to try and make myself stop laughing and nothing worked. Finally I contained myself........only to have that same man yell that command again......and all of the above happened all over again! Only Noah added "oh my God" when he grabbed his chest and jumped! I have tears rolling down my face just reliving this, and I'm sure Uncle Kenny was there in spirit that day laughing with us! Wherever we go, it seems Noah makes us laugh. 

Life is too short to worry about the little things. Noah has taught us to enjoy life and not to worry so much about what others think or trying to be "perfect". From what I can see, perfect is boring. We all need laughter in our life, and as long as it isn't insulting or hurting others, then I say LAUGH! I'd rather be laughing until my sides hurt, than crying and mulling over a diagnosis that I cannot change. We are in a good place, and I wouldn't change a thing about my son. 

If you want to see some Noah humor for yourself, look me up on Instagram. His videos are priceless!  

Vonda Weikert

That one time when: Lessons from the journey

Monday, October 6, 2014

That One Time When is a place where we want to share your stories of how your life has been impacted by someone with Down syndrome! If you would like 
to submit a guest post, just use the "Email Us!" form over there ----->

Today's post is by Ashley Moreno

 We all love Facebook Challenges, don't we? You know the drill: a friend (or sometimes peripheral acquaintance) bends to peer pressure, reposts some viral FB status about being in a horror movie where the cast is comprised of the first nine FB friends (or stalkers) on their sidebar. Or else it's the "25 Things You Probably Don't Know About Me"-- Been skinny dipping? Kissed your significant other's best friend? How did your 1,897 Facebook friends ever think they really knew you without that crucial information?

But once in a while, a Facebook challenge that's truly worthy comes my way. Recently, a dear friend of mine challenged me to post three lessons I've learned on my 9 year, 2 month, and 3 day Down syndrome journey. It was harder than I thought-- I've learned a lot of lessons, most of which seem to revolve around poop. And this girl never passes up the opportunity to tell a good poop story. But this challenge deserved more. This was an opportunity to share some more profound wisdom, summed up in three tidy little points:

1) Slooooooooow doooooooown. Almost nothing is as urgent as you think it is. Your child with Down syndrome often needs a little more time to process things, formulate a plan, and act. Allowing them the time to do that teaches them self-governance skills.

2) You have NO right to force anybody to conform to your expectations of who they should be. Each of us has the right to our own feelings, thoughts, personalities, strengths, and priorities. The fact that they make you uncomfortable or don't conform to your experience is irrelevant.

3) One of the most valuable experiences of human interaction is constructive dialogue. Don't shut someone down because they choose the wrong words. Don't punish another human being for not communicating according to your rules, for not being familiar with the correct terminology, for asking an honest question that you find ridiculous. It has taken the tireless advocacy of generations of parents to bring our children out of the dark corners, to tear down the stigma enough to allow people to approach us and question us. Do we really want to shut down the conversation because someone who's never walked in our shoes dares to say "a Downs child" instead of "a child with Down syndrome"? The alternative is silence....

I probably could have refined those points more, elaborated, waxed more poetic. But then the boy child woke up, and there was poop involved....

Mason and Junie