Tuesday, December 30, 2014

When you say “That’s so retarded”


   In 2013 my wife, Tiffany, made a new years resolution to scrub the phrase “I’m/ That’s so retarded” from her conversations.  I decided that I would do it in 2014.  Ever since our youngest son was born with Down Syndrome that phrase has meant something different when we hear it.  I am reminded of the Princess Bride when a friend, or relative, or someone I don’t even know uses it.  The voice of Inigo Montoya whispers into my head “You keep using that word, I do not think it means what you think it mean.”  “Inconceivable!”  I think, “that everyone says that phrase without a second thought”.  As many parents who navigate the new waters of parenthood having a child with special needs will attest, we know what that word means.  We feel its connotation when it’s said. 
   I do not, for a second, believe that most people use this phrase in hopes to make anyone feel bad.  Many people, upon meeting Austin for the first time, will swoon over his sweet smile.  His loving personality can win anyone over.  At church he is a hit! All of the ladies think he’s the cutest and want to hold him.  He has offered hugs to people at just the right moment.  When I run with him, everyone waves.  When we go to the supermarket complete strangers will stop what they are doing just to say hello.  No one despises him.  No one talks negatively to us about him. Yet the phrase persists. People at church have lightheartedly made comments about “riding the short bus” when referring to themselves or others.  I have friends and co-workers who will use the phrase, and catch themselves as the word "retarded" leaves their mouth.  I can tell instantly by their awkward pause that they are waiting for me to say something, or get upset.
   So, for the record, when you say “I’m/that’s so retarded” I don’t get upset. What does happen is that I live a lifetime in that phrase.  I think of kid’s that will use that term to tear down my son.  I think of a label and a stigma that will be placed on him for all his life. I think of other children with Down Syndrome, mental retardation, autism, or physical and emotional disabilities. I am reminded of new parents that are navigating eel infested waters, sensing the danger and always waiting for the next attack.  I think of our other two children, who do not see Austin as anything other than their little brother, and I wonder what that phrase will mean  to them.  I know you don’t say it with malice.  Many of you don’t even realize you are saying it. It has become a go-to phrase for many, as it was for me.  I do not judge anyone for using it.  I only wish that you would think about what it means to us.  My son is so much more than a label and he deserves much more love and respect than that phrase offers.  I offer my feelings so that if, by chance, you find yourself using that phrase to one of the thousands of parents, family, or friends of someone with special needs, you may think for a second about what it means to us. That you may think about what it will mean to Austin.


TJ

Saturday, February 1, 2014

Why I Run With Austin


By: TJ






     Why in the world would I want to push a stroller, complete with a 20lb baby, through the blowing wind and flowing hills while trying to complete a race?  There have been a few times when the stroller feels more like a sail or a cart full of lead than a baby carrier that I have asked myself that question.  As I ran this morning, pushing my sweet son Austin, and trying for a personal best at a 10k, I had to block those thoughts and keep pushing on.  In the moments when I thought about taking a  few beats to slow down, Austin would look up at me, smile, and give me one of his patented "thumbs up."  I would know intrinsically that I had to push on and not let the hills beat me.  Since the first half marathon I competed in almost a year ago I have a special shirt that I wear.  It does not sport a logo of a well known exercise company (although I do have more than my fair share of those, much to my wife's chagrin) .  Its not a homage to a great superhero either, although that would be kind of cool.  It's a nice running shirt with the anagram for the National Down Syndrome Society (NDSS) and a label on the back that says that I'm Austin's dad. A title that I hold sacred and dear above all other titles that I've been given in my life. I never thought that I would find myself running, let alone running while pushing a stroller, but when I chose to start losing weight over two years ago I caught the bug.  After learning about the NDSS and finding out that I could run as a member of their "team," I felt like it would be an awesome opportunity to raise awareness for my son and others like him.   But why run WITH him? Why put myself through the added stress of pushing him when I could just as easily raise awareness by wearing my shirt...


    A few weeks ago at one of our DS group meetings a young lady from a local high school came and gave a presentation.  She had decided to give a speech at her school on Down Syndrome, in large part because she knew one of the families in our group.  After speaking about many of the things we as parents already knew, (third replication of the 21st chromosome,  delayed development, ect..), she began to tell a story.  It was the story of a young kid with Down Syndrome that was loved by his family at home, had friends, and had the things that he loved in this world.  But then one day at school kids started making fun of him. In time, he felt like an outcast and was not accepted socially.  I was expecting that the story would end with one of the popular kids standing up for him. Instead it ended with the young man taking his life.  He chose to commit suicide instead of being ridiculed by his peers.  I was dumbfounded.  That wasn't what I had expected.  I had become so used to the "good" stories of kids and families with disabilities that I had put blinders on to the bad ones.  That begged the question: Do we mostly focus on the good, heart warming stories?  Are there still sad stories out there?  The ones where the child with special needs gets bullied and made fun of?  The ones where those children are driven to frustration and self harm?  The stories of parents that are frustrated by schools that won't listen, or doctor and hospital bills that pile up and wont go away.  Of coarse those stories are out there - numerous ones. I suppose the real question is,  "Are we paying attention or do we have blinders on?"
   Then, at around the same time, a close friend of mine contacted me on the phone.  I was traveling for work and he called to to tell me something that had happened.  That day he had been on his Facebook account when one of his old High School friends private messaged him and others a picture that was degrading to people with Down Syndrome.  There were several responses of "LOL" and "Haha Good one!"  But as my friend looked at the image he felt something else.  He sent his friend a separate private message telling him he thought that the image was in poor taste.  His friend then posted another offensive image, directed at him.  My friend again responded that he thought it was not something that he wanted any part of.  He did that over and over again until it stopped.  That day, he stood up for my son in a way that I didn't expect. He deserves a superhero symbol, one that I would put proudly on my NDSS shirt and represent his heroism in the face of being shunned socially because of his convictions.  I was grateful that he shared that. I was buoyed  up by the fact that if we can touch a life for good, sooner or later things will get better. 



   So, why do I run with Austin?  I figured it out today as I approached the finish line, Austin asleep, and my beautiful wife, Tiffany and our other two amazing children waving us on.  I run with  Austin so that hopefully one day he will be able to run with me, beside me.  So that one day he will be able to run on his own.  So that when the world sends it's worst, he will have something to deflect the worst, and turn it into good.  So that he will know that some days he will run a little slower, and that's OK.  But some days, like I did today, he will have a Personal Record (PR in the running world).  That will make him get on the road, day after day, to reach another Personal Record, and another, and another until the world sees him as more than just a boy with Down Syndrome. Until they see him as a Child, a Young Man, and then a Man.  He will be a man ready and willing to face the world and all the good and bad that's found there.


Monday, January 6, 2014

Family Home Evening

I'm getting re-started on this family blog for the umpteenth time, but I refuse to give up completely.  Also, I'm so happy with my new camera TJ and the kids got me for Christmas.  It takes better pictures, formats easier to the computer, and just all around great!  Also, the battery compartment isn't broken like my other one with batteries falling out every other shot.  Improved functioning is always a plus.  So, I've got more great pictures to share!  

Tonight we had our first Family Home Evening of the year.  TJ was able to be home instead of out-of-town for work, so we all really loved that.  Dinner was rough trying to get everyone to eat without fussing about something, but happily we were able to get everyone together to enjoy our family night. 

We started with one of Austin's favorite songs, "I am a Child of God."  

James shared a scripture he chose from the Book of Mormon, Words of Mormon 1:1-2.

TJ gave a good lesson on love with the two greatest commandments.  He knows a lot about that :)  It was probably more directed at the kids, but "loving means listening" was something we all needed to hear and act on more.

Then we enjoyed the sweet cocoa snowmen treats the kids got from Tia Kimberlina, Tio Marco and Elli.  Loved them! 







Then we got to sit by our warm fire in this very frigid Texas January, enjoying our hot chocolate and marking all the journeys the kids have been on in their short lives.  We gave each of the kids a U.S. map for Christmas to mark all the places they have gone and will continue to go in their lives.  I'm sure one day they will need a world map, but it's a good start to remember their early years a little better.  We looked through pictures to remember the places and times - memories to cherish forever. 



As always, we are looking forward to next week Family Home Evening again.....

Friday, March 29, 2013

Where The Dogwood Grows

Honey Girl




   A few weeks ago our sweet dog, Triumph taught our family a valuable lesson about death and the love that one has for a dear pet.  As a father, I am always amazed that God has put on this earth, even in something so simple and lovable as a Dog, an opportunity for growth and understanding.  This morning we were taught another lesson about love, friendship, and the enduring bond of companionship, even in animals.  Triumph's best friend and companion is, and has been, Honey.  Tiff and I found her on the side of the road several years ago when we were expecting James.  Someone had dumped her and another puppy by a trash bin and left them to fend for themselves.  I spent about 30 minutes trying to catch both of them, but Honey was the only one that would let me catch her.  The other scampered off into the woods where I couldn't get him.  The idea was to take her to the pound.  I should say MY idea was to take her to the pound.  Tiffany soon grew to love her, as she does all stray animals and people, and decided that we should keep her.  She became our third dog, and for a while, her and Tiff were the only girls in our house of boys:  Moab, Triumph, James, and Me.  Honey became very loyal.  When we moved to our new home she developed a passion for barking, and waking the neighbors.  We tried everything to get her to stop.  Shock collars, spray bottles, threats, but none of them worked.  Shortly before Triumph passed, we got a collar that would spray her when she barked and that seemed to help.  But when Triumph passed, she stopped barking completely - the product of a broken heart.  As Tiff's mom and we have nursed her and tried to help her the last few weeks, we have seen a change in Honey that was much deeper than just losing another dog that she could run and play with.  Her heart was broken.  She was in pain.  James and Jade would go out and throw a ball with her.  That seemed to help.  We gave her more attention, and that seemed to help some.  But it couldn't overcome the grief she felt for her buddy, her companion, Triumph. She's always had bad hips and over the last few days she hasn't been able to walk.  We took her to the vet to see what he could do and he gave her a shot to help with the inflammation. We brought her home Wednesday from the vet and tried to nurse her back to health, giving her liquids through a syringe so that she would drink.  As I went out this morning to give her some more pedialite I could tell that she had passed on.  Minutes before I had seen her move some, trying to get in a better position.  Many people have thought that we were a little nuts to have 3 dogs.  There are times when I have agreed with them. But today our sweet Honey taught our children, and us, something that words could never possibly convey.  That love and friendship is a strong bond.  That those ties are stronger than any rope or cable.  That loyalty is a trait to be admired, nurtured, and never abandoned.  As Easter Sunday approaches we will be reminded of that bond.  We will remember the love that our Savior has for us, and that the loyalty and love that He has for each of us made it possible for us to repent and live again.

In between Honey and Triumph we have planted a Dogwood tree.  It is one of my favorites, and a tree that always reminds me of my Dad.  Every time that tree blooms in the spring time it will remind us about love, loyalty, and friendship and that those bonds continue from this life to the next.  Thank you, Honey and Triumph, for teaching us the value of a good furry friend, even though it hurts when we have to say goodbye.

TJ
Where the Dogwood Grows  




The kids made these cards for Honey:

Jade's Honey Picture

Jade's Card




Triumph & Honey's Big Red Dog House

Saturday, March 23, 2013

Austin's ONE!

This feels like the fastest year of our lives.  Our baby Austin is 1!  He is sweet, cuddly, stubborn, lovable, smart, adorable, playful, loves his big brother and sister, and is a mama's boy (for now).  He claps, waves, he's ticklish, laughs,"talks," says "DADA," rolls all over, learning to finger eat, sits up by himself, and now we know he loves cake!  Austin is such a blessing to our family and we hope and pray for his continued progress and good health.  He lights up my day.  Over the last year I have often thought, "What was I ever concerned about taking care of a baby?  Austin is so easy.  It's my other two that argue, disobey and are most difficult at times.  I can just love, clothe, change, and feed Austin and he's so happy."  There's is something wonderful about every age of life, but nothing like having a baby around to bring so much happiness to our home.  Thank you, Austin!  You continue to inspire me and bring joy everyday.  We love you!

We practically had a week-long celebration.  We will start with his TEXAS party....

The morning of the party, Daddy ran his first 1/2 Marathon with Austin's name on the back of his NDSS running shirt.  He did awesome and we all got to see him run in at the finish line.


Then the party started that afternoon.  We had a Texas photo backdrop for everyone to take pics for Austin to see later who came to celebrate his BIG AS TEXAS #1 Birthday with us.  Everyone shared some of their favorite things about Texas with the props they chose. 

Mommy & Austin
Ashley Cheney gets credit for this great shot.  She says she never catches this so she was so excited that she got a good one.  Thanks, Ashley!

Granny Great, Papa Paul & Nana Noi

Grandma Waite & Grandma Great

Tio Marco, Baby Elli & Tia Kimberlina with one of their favorite things about Texas :)

Baby Elliana & Austin


The Mathis Fam - Brandon, Emerson, Felicia & Donaven

We played "Pin the Star on Austin" - Texas, of course, not the baby :)


James' turn


Jade's turn

Jackson's turn

Our winner was....Kaitlin!

Gift Time
Granny Chris made Austin this precious pillow case with all our family pics on it.  I love it and I know he will too!



A new toy to play with from the Mathis Fam!

More toys!


Paper is the best, though.




Our little Texan was ready for his cake.  He is the cutest in his adorable cowboy hat from Papa Paul & Nana Noi.

Wish I had videoed him eating the cake because he really tore into it...



...as you can see :)



Our Texas decor included the party favors made with help from friends and family - THANK YOU!



Cousins - TJ & Kim


Young Cousins - Grayson, Kim & Jason


Jade & Emerson are best buds

Carol & Papa - Native Texans are AWESOME!

Jason, Kim, Uncle Frankie, Grayson & Aunt Debra


Austin was tired after a long party day.


We included some of our favorite Texas traditions:  Bluebell Ice Cream & Texas Sheet Cake









Asleep for Ms. Heather (his Physical Therapist) and...

Happy and awake for Ms. Jessica (his ECI coordinator).







Austin's Birthday with just us.


He has the greatest smile!

He's showing us his cool moves

Gifts from Mom, Dad, James & Jade...

Notice the Texas Flag Bag
A new mini-diaper bag!


He loves to read with James & Jade






More playing time with new toys and the cutest little cowboy around these parts....





Guess what March 21st is every year?  WORLD DOWN  SYNDROME DAY!  So, Jade, Austin & I rocked our socks in honor of Austin's extra chromosome which is the 3rd copy representing the 3rd month of the year and on the 21st day because it's his 21st chromosome.  Not only is it just 3 days after Austin's birthday, it's also his best bud, Lincoln's birthday too who was born the same year. 

AUSTIN IS ROCKING HIS 3 SOCKS BECAUSE HE ROCKS HIS EXTRA CHROMOSOME!

All three of us stacked up together having tons of fun!
This was part of the party decor, but here are the up-close shots of Austin in 12 months:
Birth
1 month

2 months

3 months
4 months

5 months

6 months

7 months

8 months

9 months

10 months

11 months

1-year-old and ready for more adventures!