Monday, August 27, 2012

Is He Downs? No, But He Is The Birthday Boy!

Today Super Joe turned two.  He is truly no longer a baby.  And although he is the baby of the family and I automatically call him my sweet baby boy, he is truly a toddler now (well, a crawler, but you know what I mean). 

He was so tiny when he arrived three weeks early.  Well, at least he was tiny at 7 pounds 11 ounces compared to Thomas Henry who arrived two weeks late and weighed in at 9 pounds and 4 ounces.

Joey arrived quite yellow and spent almost a week under the bili lights.  I remember how he didn't open his eyes for weeks and what felt like an eternity.

I remember being so amazed and so grateful that he arrived alive.

The growth he has had over the last year is incredible.  At times it seems slower than watching paint dry, but when I remind myself of all that he has been through it is actually remarkable that he has such a fighting spirit and hard work ethic towards learning and growing.  This year has consisted of his auditory brain stem response, ear tubes, eye surgery (another possible eye surgery), leg braces and much more.  None of it seems to phase him too much.

His first birthday.

Tommy is who made me a mom and Joey is who is making me a better person.  I see the world in a different light. I only thought I was a compassionate and empathetic person before Joey arrived, but it has taken his trials and tribulations to really help open my eyes to what it means to have true challenges.  His little life has helped me understand just how marginalized individuals with disabilities are sometimes made to be.  How those who may have physical or mental challenges need strong voices and advocates to help make this a better and more compassionate and accepting world.  It's not a role I signed up for, but it is one I now cherish and am committed to.

This last week I had a few unusual conversations.  Conversations that if I had encountered them a year ago I might not have handled very well.  It seems that not only has Joey grown a lot this year, but so have I.  Perhaps I was still angry or grieving last year.  Maybe I was mourning the unfairness of him having to have heart surgery and having to work so much harder at every little thing.  Whatever it was I feel like I am moving to a new phase.  A new stage.  Less anger and more advocacy and explanation.  More compassion and grace for everyone I meet.  Did I know this much about Down syndrome before we had Joey.  Absolutely not.  How can I expect everyone I meet to know the preferred language and the preferred terminology?  Instead, I hope I can be a good role model. Someone who can help provide information and awareness.

Last week I had another parent look at Joey and say, "Is he Downs?"  Aside from the incredible grammar issues with that sentence, I was a little taken aback.  "Why no, he is not Downs," I replied.  "His name is Joey."  You see, this is a very large percentage of the world who truly see the disability or diagnosis first.  I can only hope that with kindness and grace that I can help educate and explain and eventually help make the world a better place for Joey to live in.  A world where people see him (and many do!) for his incredible smile, his funny personality and his awe-inspiring perseverance.

The question after the "Downs" was, "How severe is he?  Does he have total Downs?"  Hmmm.... this is such an interesting question.  I gave my usual response plus a little more, "Yes.  He has it 100%.  It is kind of like being pregnant.  Either you have Down syndrome or you don't."  Then to the severity question, my new response, "I compare it to everyone else.  Each person has their own strengths and weaknesses.  Some people are really smart in math.  Some are better in English.  Joey will develop his own strengths."  

I hope these are good responses.  Anyone out there have any other suggestions?

The final weird/funny/bizarre question I  received last week.  I was talking to someone I just met and the topic of kids came up.  We talked about Joey and his upcoming birthday.  Then the person looked at me and said, "Is your other son Downs?" Again-- it was just so interesting.  I am trying to look at things with more humor and less defensiveness.  I just smiled and said that Tommy does not have Down syndrome.

In the meantime, Joey celebrated his 2nd birthday with a small gathering of a few close family friends and in-town relatives.  We also celebrated this next "step" (pun totally intended) by picking up his Super Joe leg braces today.  

It's going to be another exciting and incredible year for Super Joe!

Happy Birthday, Joseph David!  We love you and are so incredibly proud of you!

Monday, August 20, 2012

Super Joe's First Leg Casts

In one week, Super Joe will be turning two.  How did that happen?  Isn't that what every parent says?  It goes by so fast.  And it does.  And yet, sometimes it doesn't.  That is actually one of the little miracles that go along with an extra chromosome. Sometimes life and time goes a little slower when you have a child with Down syndrome. And that is just one of the many, many amazing perks!

A couple months ago something finally clicked in my head and in my heart.  I was obsessed with trying to get Joey to say "Mama".  I was obsessed with trying to figure out when he would walk.  Then something happened. I wish I could put my finger on it and tell you when or why the change occurred, but I finally settled in to not worrying anymore about when Joey would do these things.  I guess I finally and truly offered it up. 

In just the past six weeks or so Joey has finally started to really trying and pull himself up to stand.  It is incredible to watch. He can now climb up two stairs and back down.  He is trying to climb up onto some of our storage boxes.  He is finding a new world to explore and his motivation has skyrocketed!

At times it is a little heart wrenching and I can feel myself gritting my teeth and my stomach tensing because I so badly want to reach out and offer him a hand to help him up, but I know that this is part of his growth and learning process. I don't know if I have personally ever watched someone work so very hard just to try and stand up. I am so incredibly proud of him every single time he does it.  It is getting him one step closer to cruising and eventually walking. 

Casting Call - Broken Bones Need Not Apply

Today we were finally able to get Joey's legs cast for his first set of orthotic leg braces. 

Since the leg braces possibility came up I had been picturing Forrest Gump in my mind and thought they would be something similar to this:

My imagination has clearly ran amok and instead, Joey's leg braces will probably look something like this:

However, since he is Super Joe and we had a choice of what pattern to have on his leg braces we decided to go with the Superman Option.  It will be fun to see how it looks when we pick them up next week on his birthday. 

Today we took Tommy (aka Batman) with us to the casting appointment.  We decided that the leg braces are going to be an everyday part of our lives and Joey's life and I really believe that by taking Tommy to some of these appointments and involving him helps to take some of the  mystery and intrigue out of why Joey seems to get to so many places (therapy, surgery, braces, oh my!) while Tommy doesn't have quite as busy of a schedule.  I thought that if Tommy could be involved from the casting onward, he would have a better understanding of what was going on.  

We do the same things with therapy sessions.  There are days when I've got a babysitter coming and Tommy just really wants to go with us.  In those cases, we all pile in the car and go together.  I tried to take Tommy with us on my own, but as sweet of a child as he is, he is still a curious 3-year-old (almost 4!) who has a hard time sitting still for an hour while his brother "plays" with fun looking giant balls and toys.  That being said, I'm constantly trying to figure out and walk the fine line of keeping life balanced for both boys and spending as equal amounts of time as possible. 

Quick Tommy Interlude

Tommy went to a great camp about 5 Wednesdays this summer at Romp & Stomp (they have giant inflatable slides and toys).  Each day he came home with a new adventure.  The first day when he told me that someone had peed on the slide and that I shouldn't worry because they are going to clean it up before his birthday.  Then in the next breath how he said, "Yeah, mom.  It was me who peed on the slide."  His best buddy Grant backed him up and said Tommy didn't pee on the slide, but I'm pretty convinced he was the culprit.

Last week he came home and showed me his camp class picture and said, "I don't like that boy in the red shirt.  He is a mean boy."  I asked him, "Why don't you like him?"  He said, "He told me that I was NOT a big boy and that I was NOT really Batman."  Oh, how I hid my smiled.  Two truths, but two unnecessary truths because I tell him every day what a big boy he is and I always call him Batman.

Back to the great casting adventure.  As we sat in the Orthotist's office and he started wrapping the plaster around Joey's leg I started to giggle. I mean really. I found it so incredibly funny that we have two wild and rambunctious boys and yet the first time either of them gets a cast it is not even for a broken bone.  And it's not even just a single cast, but two casts in one day!

First the leg sock/pantyhose he slid over Joey's leg.

Now the casting begins.

I had a bottle and a handful of Dum Dum suckers to try and keep him still.  Yes- we are still using bottles, but a new swallow study is one the list of things to do after the leg braces and his eyes follow up.

One leg done!  One to go!

Leg two.  He's starting to get a little antsy.

The process went by much quicker than we expected and Joey was incredibly cooperative for what had to be a not so fun feeling of having your legs plastered and cold.

He used scissors instead of the saw.  Whew!


Finished product
We go back next Monday on his birthday.  At first we resisted, but ultimately, these braces, like so much of the other things Joey has to work through are going to give him a better shot at living the best life he can possibly live and for that we are grateful.

What are you most grateful for today?

Happy Monday!

Monday, August 13, 2012

Let's Make a Deal Wayne Brady - Stop Making Fun of People with Down Syndrome

Who is going to stand up and take a stand and declare that it is morally repugnant to mock and make fun of people who have Down syndrome?  Does the National Down Syndrome Society whose mission statement is "To be the national advocate for the value, acceptance and inclusion of people with Down syndrome" have a plan? 

What does CBS think of its game show host Wayne Brady's comments mocking Trig Palin?

As reported on, during Sunday night's airing on Comedy Central (notorious for horrible jokes about individuals with Down syndrome) of the Roseanne Barr Roast, Brady mocked fellow roaster Jeffrey Ross by saying, "Now the thing is Jeff, these are all jokes, and I really like you.  I really, really like you.  But a lot of people hate you, especially Sarah Palin because you remind her of what Trig is going to look like when he's 40."  

As you can hear in the video, there was a mixture of laughs and boos from the crowd to which Brady responded, "Oh, now you boo me?  F--k y'all.  I don't want to hear that.  These people say all of this s--t about me, and you boo me because of Trig."

Here is a clip of the video-- there are curse words, so please do not watch around young children.  While some argue that showing the video and talking about it just helps give it notoriety, I argue that we must shed light where there is darkness.

Yes, Mr. Brady.  I am grateful to the individuals who had the good sense to know that your comments were deplorable and hateful.

By participating in such a "roast" on Comedy Central, you accepted that you would be made fun.  However, Trig Palin and his family never were given that choice.  You mocked an innocent child because he was born with an extra chromosome.  

What makes me even more sick is that this show was taped well before it was aired and Comedy Central left this piece in.  And why?  To spread hatred?  To spread intolerance?  While Sarah Palin is a public figure who has put herself in the public eye, is it ever acceptable to mock a person's child.  A person's child who has a developmental disability?  

How are individuals who have Down syndrome ever going to be given at least the minimum level of human respect if comments like these are shown on television and promoted?  

I beg of the NDSS to take a stand and start addressing these insults and mockeries in a swift and powerful PR campaign like GLAAD does.  

I urge CBS to consider sanctioning and putting Mr. Brady on an administrative leave.

I plead with the rest of the world to please consider looking beyond our children's extra chromosome and looking at them as an individual who has limitless potential when given the opportunity.  

What can you do?  Leave a comment on the facebook page for Let's Make a Deal.

Take a stand.

Believe in something bigger than yourself.

Thursday, August 9, 2012

A Year of Learning to Walk - 2012 Buddy Walk

At 6:00 am it was pouring rain.  I started texting my husband, "Bring umbrellas."  Then it became, "Bring coats."  Finally, "Bring a change of clothes."  Miraculously the skies started to clear around 8:30 or so right as the first walkers started to arrive and the sun shone for the rest of the morning.  It was an incredible, incredible walk.  

The photographs used here were taken by our friends Mark and Nat.  Nat's website can be visited here. 

They estimate that some 4,000 people attended.  One of my most favorite parts was working with the Wal-Mart volunteers and helping them get set up for their roles-- I would thank them for being there and then they would thank me for them getting to come.  

There were buddies (ie--individuals with an extra chromosome) of all ages and their Buddy Walk teams ranged from sporty to tie-dyed to motorcycle enthusiasts.  

Menchie's brought gluten-free treats and hundreds of t-shirts.

The spirit, the energy, the love, the compassion, the acceptance.  It is so incredibly difficult to put into words.  Many of the Cowgirl Up! readers walked and donated to help raise money to fund advocacy and education in our own Northeast Ohio.  As a team we raised over $11,000.  How do we begin to thank you all for your love and compassion? It was remarkable.  

My best friend from childhood flew in from Maryland with her daughter.  My sister and her daughters traveled from our hometown to walk.  A woman I went to high school with almost 20 years ago (yikes!  that is scary to write) drove up the day of the walk and brought her daughter.  Cousins from New Jersey and Akron walked with us and helped carry the sign.  The children banded together and all carried the Joey's All Stars banner.  One of my best friends in Akron drove around and delivered team shirts despite being in a "boot" for a stress fracture.  

Two of our wonderful friends, Mark and Jon, picked up the gluten-free pasta for the Club Bud and drove it up to Progressive Field.  Nat took amazing photos to document to the day. Friends brought newborns with them and Maureen had her precious newborn, Sasha, there in spirit while she stayed back in the NICU getting stronger to come home.  The list goes on and on.  Team members raised money on their own to donate to the team.  Our friends, our friends' families and our families all banded together for a few hours on a hot Saturday morning to say, "We accept Joey just as he is and we love him." 

Could he be more relaxed with his donut?

Kelly with her boot.

We tried to thank each and every person who donated and also every person who walked.  I hope that we were able to express just how much your participation and love mean to our family. 

"Walking" seems to be a big theme in our lives right now.  I'm working on another post called "Strategies for Parents of Non-Walkers" and as it gets pushed back for other posts, Joey is actually making remarkable progress in his crawling and pulling to stand.  It's an emotional topic.  For the better part of a year I grieved that Joey wouldn't walk by the time he was two.  His older brother, Tommy, didn't walk until he was 17 months old and he was medically a "typical" child.  Joey, on the other hand, had heart surgery, eye surgery, ear surgery, a helmet and a litany of other issues in between and I'm finally realizing that him not walking by the time he will be 24 months old (in only a couple of weeks!) has suddenly become a non-issue.

For many, many months while he struggled and worked so hard to Army crawl I could never even envision a time when he would possibly walk.  My vision is changing.  My faith is renewed.  I BELIEVE!!!  I finally went out and bought him a super sturdy pair of Saucony shoes and they seem to be giving him some good support.  He has gained some confidence and seems much more motivated than he used to be to try and stand up.  It would appear that now Super Joe also BELIEVES!!!

What also helps is the team of professionals that treat Joey who also believe in him.  His Occupational Therapist told us last week with conviction and passion that he wants Joey to be able to walk in the 2013 Buddy Walk.  I had settled on him not walking until 2014, but now I BELIEVE! 

Tonight the topic is a little raw because tomorrow he will get casted for his leg braces.  All I can picture in my mind is Forrest Gump and those horrible metal braces he wore.  On the other hand, I know that this is just another part of our journey and I know that these braces will help Joey to achieve new potentials.  It's kind of like when we had the helmet.  It didn't really bother me.  It was kind of a pain to clean and get him to wear, but he looked adorable in it.  What did bother me (in the beginning) were the stares.  I know-- not everyone is used to seeing a baby in a helmet.  I'm sure that not everyone is used to seeing a little almost-2-year-old in full leg braces either, but it will become our new "normal" just like everything else does.  It's more the stares.  The stares kind of get to me.  The problem is-- I forget that Joey has Down syndrome.  I can never figure out why people are looking at us.  It's almost become comical.  On one hand, we live, breath and eat Down syndrome, but on the other hand, we don't ever really think about it. 

These theme of the walk and walking is a continued thread in our lives right now.  A huge thank you to every single person who bought a shirt, donated, walked, prayed and supported the 2012 Buddy Walk in so many different ways. 

In the meantime, I have to share this wonderful story and photo I found.  I have so much admiration and respect for Oliver Pistorius and his Olympic journey.  I have so much respect for the BELIEF his family had in him and that he had in himself.  He is helping spread awareness and change expectations in so many amazing ways.  In a world where there are still disturbing stories like this that show the ignorance and hate individuals with disabilities have to fight against (STILL!), it is so inspirational to watch Oliver and how he is helping educate the world. 


Joey-- we need to go get your different shoes!

What inspired you this week?  Do you have the Olympic spirit?  What do you BELIEVE in?