World Down Syndrome Day: Who Am I?

World Down Syndrome Day is tomorrow (3/21). What a difference two years makes! There was a call for posts from the International Down Syndrome Coalition to write about: Who Am I?

Here is my response:

I am not what you think I am at first look.
My size, my eyes, my unintelligible cries;
They confuse you, make you sympathize.
But I’m telling you, I’m not what you think I am at first look.

There is a mystery to you of who I am.
Your outside stares, glares and whispered snares;
That’s not on me, it’s theirs.
But I know there is a mystery to you of who I am.

I am not what you think I am at first look.
My fingers, my toes, my flat-bridged nose;
They bewilder you, make you pose.
Believe me, I am not what you think I am at first look.

There is a judgment from you of who I am.
Paint your little box, stocked with rocks;
Ready to throw out, head cocked.
I feel the judgment from you of who I am.

I am not what you think I am at first look.
My strength, my joy, my place in this world.
Ha Ha! I might just have you foiled.
Maybe you know, I am not what you think I am at first look.

There is a part of me
That you just cannot see
Simply by looking.

For who am I?
I am the strength you wished for,
[The determination that only comes from the heart.]
I am the unbridled joy you wished for,
[The love that only comes from the soul.]

I am more than my boundaries;
I am more than numbers.
I am more.

More than you knew you wished for.

I am not what you think I am at first look.
My size, my eyes, my “mama” cries;
They now fill you; I’m your little prize.
I told you, I’m not what you think I am at first look.

 

March Mom of the Month: Meet Leesha!

One afternoon, late summer 2011, I believe, I came home and received a phone call from the DSAGC. At this point, Wyatt's diagnosis was settling in and I had started to get fairly involved with the Ds Community in Cincinnati. The DSAGC contact said that there was a new Mom who was having some ups and downs with her new diagnosis, and they thought that I would be a good person for her to connect with. They gave me her number, and we eventually connected. We decided to meet at the Hyde Park Panera with our babies. I walked in and proceeded to meet Leesha and her gorgeous daughter Jaia. We ate and talked, and found lots of things in common, including our inner fears about our children's futures and many joys as well. We have since grown from that first meeting into having a deep and meaningful friendship. Leesha is beautifully honest, funny as heck and is incredibly smart (did I mention she has her Ph.D?). She dresses Princess Jaia in some killer duds, too.

I admire so many things about her, including her strength...and her spunk.

And Jaia is now Wyatt's fiance, until further notice at least ; )

First Name:  Leesha

Children:  

Jarren, age 12, basketball enthusiast and future entertainment lawyer or TV personality; Jaxson, age 5, video game expert, bundle of energy, future superhero; Jaia, age 20 months, princess who is adored by her brothers who serve as her loyal subjects, destroyer of jewelry, diva rockin’ the extra chromosome.

Do you work or volunteer? IF yes, what do you do (besides being a great Mom!)?

I am a professor in the Communication department at Cincinnati State College.

How many months/years have you been involved with the Eastside or Extraordinary Friends Mom’s group?   

The groups that I am most involved with are the African American Family Network and the (Extra)Ordinary Friends Playgroup.  I have been a part of the AAFN since Jaia was about 2 months old.  We officially formed (Extra)Ordinary Friends in April 2012. [Leesha named this group, which was the inspiration for starting, and naming, my Blog!!]  I stay involved with some of the other groups and with the DSAGC,  though I would say that those two groups have been my lifelines through this process.

Why you like being a part of this group?  

I love being a part of the (Extra)Ordinary Friends because we are all going through the same stages together.  Our children will grow up together.  I have no doubt that they will form lifelong friendships with each, and I know that I have formed lifelong friendships as well.  The African American Family Network is so important to us because we share a cultural connection.  Our families have children of varying ages so we have mentors that we can connect with for advice and to see what comes next with our children’s development.  I am more politically passionate about the AAFN because of the stark racial disparity of life expectancy for African Americans as compared with Caucasians who have Down syndrome.

Best advice for new parents of a child with T21:  

I will share the best advice that I received.  “It’s always going to hurt, but it won’t always hurt this much”.  Someone told me that when Jaia was very young, and I held onto those words for dear life!  And I have found it to be true.  Does it still hurt sometimes?  Absolutely.  Does it hurt as deeply as it did the first year?  Absolutely not.

Greatest joy in having a child with T21:   

Well of course I love the Ds community and the friends we’ve made.  We have an instant family.  One of my two joys has been watching how accepting my children are of differences.  I always talked to them about being aware and being kind.  But no amount of lectures can replace their experiences of having a sibling with T21 and interacting with people who have T21 or other special needs.  My second greatest joy has been educating others, and educating myself.

What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends?  

It’s okay to be sad.  I think there’s a pressure from the Ds community, unintentional as it may be, that you have to be happy and joyful about Down syndrome to really love your child.  You can love and adore your child and still wish they didn’t have Ds.  There is no time frame to grieving.  I wish we would allow each other the space and opportunity to be authentic about how we are feeling.  I have found the acceptance to do that in the African American Family Network and the (Extra)Ordinary Friends group, and I am always grateful for that.

Favorite Therapy Trick/Tool:   

When we were working on “tummy time” so Jaia could get upper body strength, I would spread the blanket across the pew at church and lay her on it.  She kept trying to lift her head because she heard the music and the preaching.  Instant therapy for 2 hours!

Random question: What did you do during your childhood summers that you loved the most?  

Hmmmm….visit the ice cream truck?  I worked at the Cincinnati Zoo in high school.  It was definitely one of my favorite jobs ever.

If you feel like it’s not too personal, can you share your diagnosis story?  

Let’s just say I didn’t know prenatally, and for me acceptance was a choice, not a foregone conclusion. 

Thank you, Leesha for being an [EXTRA] ordinary inspiration, advocate, and friend!

The beautiful Dr. Leesha!

Princess Jaia at her baptism

Leesha's supper handsome sons

Sweet kisses from Jaia!

The Double Edged Age Question

This post was in edit mode. But then the topic popped up on one of our Mom's groups FB pages, so I thought it was a good time to share.

The other day, I picked up my kids from the sitter as I usually do on Friday's. I was late and rushing. I walked in and my sitter was getting ready to leave. I offered to stay so she could make a friend's birthday party. While I was waiting for another Mom to arrive, I interacted with one of the kids I had not really seen before. He was standing, playing and then I picked him up to put his shoes on.

He was heavy, likely weighing more than Eden, my 4 year old. He was trying to talk and I was attemping to understand him. His mother arrived and we exchanged pleasantries.

Then I asked her...

"When is his birthday?" I said with intrigue.

"August....(something)" she said.

'So will he be 2 or 3?" I questioned.

She looked at me a little odd.

"He will be 2," she said, then continued, "how old is your son?"

I was not sure I wanted to answer.

"He just turned 2 last week," I responded.

The look I received back told a whole story in a matter of seconds: confusion, pity, questioning, empathy...

I was affected. Maybe I read into it too much, but still. This child was obviously leaps and bounds ahead of Wyatt, and that is my reality. I don't see it often because I'm so focused on what Wyatt can do versus what he can't or isn't. I felt slapped in the face with Wyatt's delays.

On top of that, I noticed that she did not ask about Eden. This is a scenario with which I am often faced.

We Mom's like to ask how old other kids are. But with Wyatt, and other kids like him with Down syndrome, it can be a question that is tough. People seem to ask about our cuties, likely with great intent on paying attention to, and offering compliments to our kids with special needs, in an attempt to graciously acknowledge our kids. This is great, but it can also leave us feeling like our "typical" kids are ignored. And it can bring up a whole host of other feelings.

I don't know why this is such a sticking point. Maybe that question is a reminder that our kids are "unique" or maybe it is a reminder that our kids are behind. Especially for me, since most people guess that Wyatt is a full year younger than he actually is. Don't get me wrong...I'm completely guilty of this ageist mis-fire. Once I asked a Mom if her son was 3. He was actually 6. (Open mouth, insert foot.)

I spent much of the ride home that Friday justifying Wyatt's accomplishments, making a mental list off all the things Wyatt could do and the other kid couldn't. I bet that kid can't sign. I bet that kid can't focus in therapy like Wyatt can. I bet that kids doesn't eat like Wyatt or is as well behaved as Wyatt. I bet that kid is...blah, blah, blah...

Once home, we sat down to a quick $5 pizza dinner and I felt compelled to address what it means to be small. A few weeks ago at church, they taught Eden about David and Goliath. I asked Eden if she remembered the story. With prompting, she vaguely recalled the story and I filled in the gaps.

"Eden, you and Wyatt are probably always going to be smaller than others in your class, " I told her. "Mommy was almost always the smallest. But you know what? Being small doesn't mean you are not strong," I told her. 

I don't know why I felt the need to address this directly that day, or why I explained it to Eden. Looking at the reality of Wyatt's delays sometimes hits hard, with me likely over-exaggerating his actual delays. I felt like I not only needed to defend Wyatt's delays and small stature, but I also related it to Eden. My kids are only about 10 pounds apart, with Eden currently weighing about 32 pounds at 4 1/2 years and Wyatt maybe kissing 22 pounds at 2 years.

But after all my soul searching, I justified it: my kids are small. But they are small...and mighty!And who cares what age others think they are!?! They are doing just fine - no matter their size.

The age question can be a double edged sword. Asking can evoke emotion, but ignoring the "normal" Mom question can seem dismissing. But it doesn't have to be that way.

The next time you see a kid with special needs, feel free to oooh and aaaah over their cutness. But also, do us a favor - do the same for our other children...and don't try and guess their age, just ask how old they are. And when we answer you, please respond with something more positive than a confused or sympathetic look. Like maybe try, "oh he is such a big boy! And on top of that, your daughter is beautiful!"

That would be nice, and appreciated.

Here are a few random photos of my Small and Mighties:

Eden and Wyatt watching Backyardigans on the iPad

Sleepy Wyatt and Eden on Daddy's lap for movie night

My beautiful, petite Eden

Wyatt's baptism...let's face it, we are not going to ever have giant kids...

My handsome little man getting his hair cut