Beneath The Surface

I often read and hear about other parents of a child with Down syndrome, saying they don't even think about Down syndrome anymore. For me, although I don't think about it in the same way I did when Ari was first born, it's definitely something I think of several times a day, at least. 

Thinking about it is one thing, grieving over it is another. I often end the story of Ari with a line about how things were hard, but now it's all great and we couldn't be happier. Most of the time, I actually feel this way. However, I recently realized that I still have grief over his diagnosis; it just hides there in the back of my mind and deep down in my heart, not even obvious to me...until it is. 

I think his being in school full time, around other kids his age (most typically developing), has brought some emotions to the surface for me. I know that comparison is the thief of joy, and yet, it isn't that easy to turn the comparison radar off. I love that he is thriving in school and I am so happy to see all that he is learning, but some days are just hard for me. When he was a baby, his cuteness- his absolute heart-melting adorableness, made it easier for me to look past his delays and differences, and he got a lot more positive attention from strangers. Now, although he's still darling, it is just different. I think people notice him less as cute baby, and more as a child who is different than other children. 

Violet is a typical child, maybe even developing ahead of the curve. I have so enjoyed getting to see the timeline unfold in the typical fashion with her, and yet, even that makes me tear up sometimes. I really do love that Ari has his own timeline and is his own person, and I love how much that has taught, and will continue to teach us. But, I guess Violet's progress gives me a comparison I never had before, since Ari was our first. And it causes me to envision the future in a different way as well. What happens when Violet passes Ari up developmentally? I don't know what that will look like or feel like, and in some ways it will probably be cool, but I know it will likely bring that grief to the surface as well. 

I realize that most parents probably don't understand my sentiment, but I am trying to be as open and honest about my feelings as I can be, without worrying about if it will make me look like a bad parent. I know I am a good parent, and that I love my children more than the world. I also know that I am human and flawed, and just trying to get through each day with more smiles than tears, more laughter than frustration, and more hope than fear for Ari's future. 

As I wrote in an older post, "without the grief, my heart never could have opened up enough to receive the love that my son was bringing into it." Now, the grief just stays hidden, deep beneath the surface, to make sure I continue to keep my heart open to the love and joy and wisdom that my son will continue to impart.


Also, Happy Halloween from the Oz crew!

Reeve's Tees

I am excited to feature a very near and dear company to you today: Reeve's Tees! Many of you know that a photo was taken of Ari sporting a very popular style of Reeve's Tees, making him skyrocket into Facebook fame, after it was posted to the Global Down Syndrome Society's Facebook page. The original post has nearly 150,000 likes and over 85,000 shares! Ok, enough bragging, but seriously, how often does this kind of thing happen in life?! 

We owe it all to Reeve's Tees for making such a great shirt. The first time I saw this shirt, I bought it immediately. I love that it is funny without poking fun. For me, putting him in shirts with these kind of messages is a way of answering the question that might be in someone's mind (does he have Down syndrome?), but that they don't feel comfortable asking. It is way to put a smile on someone's face. It is mostly a way to show that I am so proud of Ari and all that he is, not ashamed of him. 

I asked Shana of Reeve's Tees to answer some questions, and give some details about her awesome company. I hope you enjoy! 

Shana, can you tell us a little bit about yourself?

On the personal side - I've been married to my husband Jason for over ten years.  He's a pilot in the Air Force, which means that we've had an adventure-filled life involving lots of deployments and cross-country moves. We are currently living in Ohio. We have two sons - Colby (age 9), Reeve (age 1), and another boy due in February.

On the professional side - I've been a business consultant in the financial industry for about 13 years. Six years ago I left work to study business full-time at University of Michigan. In 2011, I graduated with an MBA focused on strategic marketing. After graduating, a classmate and I founded a boutique consulting firm where we provide outsourced strategy, marketing, and web development to small businesses that do not have these departments in-house.

When and how did you decide to start a tee shirt company?

I mention my business background because it played a huge role in my decision to start Reeve's Tees.  As a marketing consultant, I help companies who are struggling to effectively communicate their identity to the public.  

Two years ago, in my first trimester, Jason and I found out that the baby we were having (Reeve) had Down syndrome.  At that time, I had never personally met a person with the condition.  At first the news was very heart-breaking.  There were a lot of "I'm sorry"s, "I feel bad for you"s, and general discomfort when discussing Reeve's condition with others.

While I was still pregnant, I decided to become involved in our local Down syndrome organization (Miami Valley Down Syndrome Association - MVDSA). Our family also started going to a local tennis program called BuddyUp tennis for kids and adults with Down syndrome.

As we met more families, and spent more time with individuals who had Down syndrome - I noticed a complete misalignment with the public perception of Down syndrome (sadness, discomfort, and pity) with what was really going on within the Down syndrome community (joy, love, acceptance, and pride).  Families were not sad at all - they were proud - so so so so proud!

This inspired me so much - both as a new mom, and also as someone who has focused my career on helping others communicate their unique personalities to the public.  I wanted to bridge that gap between public's perception of Down syndrome with the true nature of the Down syndrome community.  

I felt that the easiest way to do that would be to make t-shirts to change the paradigm.

What makes your company unique? 

I believe that there are three things make our company unique... the first one is our edgy brand of loving humor, the second is our packaging process, and the third is that we are a for-profit company by design.

As a marketer, I know that to capture people's attention, one must be both pithy and interesting.  Prior to starting Reeve's Tees, I had seen a number of Down syndrome awareness t-shirts that said things like "I love someone who has Down syndrome."  Those were great, but I didn't think that they captured the magical flavor of love and acceptance within the Down syndrome community, nor did they turn heads or cause people to think differently about the condition.

I wanted a new voice for the Down syndrome community - one that was a little edgy - a little shocking - and a little bit humorous.  I needed this voice to grab attention, change perceptions, and most importantly, to communicate to people that they can feel comfortable around those with noticeable differences.  As they say: humor is often a great way to diffuse awkward situations.  

With humor, one has to be very careful.  Historically, humor has been used at the expense of individuals with Down syndrome.  I wanted our brand of humor to express love and invite connection to people with Down syndrome.  

Through my own anecdotal experiences, I noticed that saying "My baby has Down syndrome" created silence, distance, and awkwardness.  On the other hand, saying that "My baby is a homie with an extra chromie" led to smiles, comfort, and even genuine curiosity and heartfelt questions about Reeve's condition.

Reeve's Tees are different because they defined by this voice within the Down syndrome community which expresses a unique brand of loving humor.

The second differentiator is more operational - it is our packaging process.  For anyone who has ordered a t-shirt, we hope that they were pleasantly surprised by the work, thought, and care that has gone into the packaging. 

Our tees are packaged by adults with Down syndrome or by special education students who work with us as part of their vocational training.  Each of our packagers has unique intellectual and/or physical challenges, and packaging these tees has been a means for them to refine their skills, show off their capabilities, and become proficient in a process for which they can feel proud.

For adults with Down syndrome, finding work can be challenging.  Packaging for Reeve’s Tees is a way for them to earn money and save up for their own personal goals.

The care and dedication that our homies put into their work is amazing - consequently, our packaging has become another way in which we express the pride felt within the special needs community.

Lastly, most organizations focused upon raising awareness for individuals with Down syndrome are non-profits funded by donations.  We are a for-profit company funded by revenue.  I wanted the individuals who work for Reeve’s Tees to be a part of the economic process. 

It was important for me to be able to tell them: "You are doing important work that creates value.  You are making money because what are you are doing has meaning.  You are earning money because people respect your abilities and appreciate your hard work."  

While we are "for-profit" - we are also a very generous company that donates both cash and merchandise to non-profits whose missions are to empower, educate, and/or provide research to enhance the lives of individuals with Down syndrome.  But for ourselves, we are proud to say that we are completely funded by our customer's loyalty - for which we are most appreciative!

Most revenue goes back into growing the business so that we can continue to expand our company and further our mission – to help others “Get comfortable with difference!”  Soon we will be selling shirts that help raise awareness for other genetic conditions.

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Thanks to Shana for doing such wonderful work. You are an inspiration! Here are some more images of the staff at Reeve's Tees and a couple of videos that show the love that goes into the packaging! 

My family teamed up with Reeve's Tees and Virginia Stiles Photography to get some images for marketing, and we had a blast! 

I am happy to announce that I am doing my first blog giveaway! If you would like to win this Reeve's Tees homies tote bag, simply leave a comment below, telling us what you love about Reeve's Tees. Winner will be chosen on Sunday night. Make sure to check out all the great products Shana has available at www.reevestees.com! 

Let's make a change.

A common topic among those of us in the special needs community is the use of the word "retard" or "retarded" in a non-medical, non-musical, but slang sense.  Of course we know, as a society, that using the word towards or at someone with an intellectual or physical difference is hate speech; where we are divided is regarding the use of the word in everyday life as a slang term meaning stupid, unintelligent, idiotic. etc.  It is thrown around with such frequency and is so wide-spread, that people have begun to accept it as a normal and acceptable term to use.  This is especially true in our younger generations who are growing up hearing it and not being made aware of the fact that it is not appropriate.

I used to say it, and I am ashamed to admit that is took the birth of my son to change that for me.  I wish I would have know someone with an intellectual difference growing up, or that someone had told me that it wasn't right to say and that it actually hurt people who heard it.  I would have listened and changed.  I, like most people who haven't been educated about it, thought "everyone says it!" or "I don't mean it in that way."  I try to educate people now, and most are extremely receptive and apologetic, understanding of my feelings.  What I have a very hard time with are the people who get defensive and mean, telling myself or others that we are overly sensitive and ridiculous to fight against this word.

Sephora is marketing a product that has brought these insensitive people out of the woodwork.  It has also provided an opportunity for the advocates (parents, siblings, and friends) of someone with special needs to try to make a difference.  Kat Von D, a tattoo artist, designs a line of makeup specifically for Sephora.  This week, Sephora actively marketed a lipstick by Kat Von D named "Celebutard." Wiktionary defines this word as a "blend of celebrity, debutant, and retard," or "a celebrity viewed as unintelligent; especially a celebrity who behaves badly in public."

Sephora's Facebook page and website have been slammed with comments and requests to take the product off the shelves or simply rename the shade of lipstick.  They haven't yet taken any action to make it right, but we will continue to fight to make it happen.  We can't make the whole word stop saying this word, but this is something we can do.  Naysayers tell us we are overreacting.  They ask "what does it matter anyway?" As Kat Von D herself responded, "It's just a F***king lipstick."  Yes, it is.  But that fact remains that every time something like this is allowed to be marketed and sold, the R word or the use of it in mash-up terms like this, just perpetuates the idea that it is somehow funny and acceptable to say.  And as a friend of mine asked, "can I not even go and buy makeup without having to hear that word?!" I want you to know that I am not getting involved in all of this because I like to fight about stuff.  I assure you that every time I hear the word used, it feels like a stab to my heart.  Truly.  It hurts.

Ari is going to have challenges in his life.  We live in a society that doesn't always see his value as a human being.  He will work harder than most to achieve his goals and he will be doubted at every turn. He may have additional health concerns to face in his life.  Does he also need to fight to live in a world where he doesn't constantly hear a word that demeans and hurts him?  Really?  So, maybe this seems to some like a battle not worth fighting, but it is one I can fight, and I will do anything, no matter how silly some might think it is, to change the world he will grow up in.  He deserves it.

If you would like to help in this cause, you can sign a petition here. Update: The lipstick has been pulled from the shelves.  Here is an article about it.

I also found a great video today by Robb Scott.  It is a spoken word poem he wrote for his son.  You can see the video here.  I wanted to post the words here as well. Enjoy! And please spread the word to end the word!


Breakin' Labels - by Robb Scott

Retard!

It's a word you woulda heard me use a lot,
to describe my thoughts on a rotten situation.
Like that attack on Iraq - that lacked any facts, 
I sat back and said "now that's a retarded altercation".

I didn't use the word as a way to demean or be seen as being hateful.
Only to let you know you ate your weight in stupid,
and you still got a plate full.

So it was ok. It was playful.

But I didn't realize, tied to the other side of that word,
was a slur and people cried when they heard it.
I was oblivious to the insidious nature of the term.......

but I was about to learn it.

When my wife gave birth, there was no plan to rehearse
for the worst, no test for this lesson.
I was stressed and confused, I cried at the news,
This ain't the son that I guessed I was getting!

He's ailing and sick and thin as a stick,
he's too frail to even come home.
They said he'd be slow, success would be low, 
and oh! he's got Down syndrome.

And that's when it all changed....

and I became estranged from that word you heard me use a lot,
my son was the one who rearranged the plot.
and taught me words aren't after-thoughts,
they're weapons -- they're used for good or not. 

So I got to build him an armoured heart,
so this word won't rip my son's apart,
but I don't know where or how to start,
and that right there is the hardest part.

Because I can't protect him.

So I expect when he roams this world alone,
he'll find this word under every stone,
he'll flip it over and bring it home,
and go over it with a fine tooth comb.

And he'll examine all the ways it's said,
the nouns, the verbs, the adjectives.
But I hope at night when he goes in bed,
this word won't stay inside his head.

Instead, 

I hope he dreams of this scene in France,
where he sees the word and they exchange a glance,
he extends his hands and takes the chance, 
and asks the word, "would you like to dance?"

And they prance, and play all day and get dirty, 
spread their wings and sing like a birdy,
Then he tells the word, "I know that it's early"
"but I got to go now that I know you can't hurt me."

And then he goes, and shows the world what we see,
a heart so big you'd hardly believe me,
and though I know it won't be that easy,
he'll break these labels, so he's able to breath freely.