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

February Mom of the Month: Meet Stephanie!

Meet Stephanie!  

Stephanie and I met one evening at a DSAGC sponsored seminar last spring. She was there with her brand new son Eli. I hadn't met too many Moms with boys yet, so my husband, Josh, and I approached her to introduce ourselves. In that moment, I made an immediate friend. She was a fellow Special Ed teacher and also had a daughter the same age as my Eden. She was teaching at the same school where my Dad taught for nearly 30 years. Since then, we continue to find interesting connections on a regular basis and become closer friends. She is just one example of the fact that, without Down syndrome, I would not have found this truly [EXTRA]ordinary friend. She is a member of our [EXTRA]ordinary Friends group (comprised of families with kids who have Ds and were born in 2011).

First Name: Stephanie

Children: Evie - 4 years (spitfire, just like Eden); Eli - 14 months (Ds)

Do you work or volunteer? 

I'm an Intervention Specialist at Colerain High School. (On the northwest side of Cincinnati)

How many years have you been involved with the Extrordinary Friends Mom’s group? 

1 year

Why you like being a part of this group?  

I know it might sound trite, but I've met some really wonderful families through this group and it's very helpful to have other people that just "get it." I've developed close friendships with a few of the Moms and I value that so much. 

Best advice for new parents of a child with T21: 

Don't worry--it's going to be a great life. A hectic, often overwhelming, sometimes scary life. But a really great one if you let yourself relax enough to enjoy the ride. Don't let Down syndrome define your child--remember it's just a diagnosis. Don't let Down syndrome consume you either, but be an advocate. And remember that more than anything, your new baby needs to be loved, just like any other baby. 

Greatest joy in having a child with T21: 

This is a hard question. I get really emotional just thinking about it. As parents of kids with T21, we're sometimes accused of "Disney-fying" Down syndrome (and our lives with Down syndrome). But so many things in my life have gotten better since my son was born. I've deepened my faith and spirituality--that sustained me during his time in the NICU when he was dealing with a life-threatening condition. I've forged meaningful and cherished relationships with new friends. I've evaluated my priorities and made more time for my family and focused less intensely on my career (which I'm sorry to say I didn't do when my daughter was born). And most importantly, Eli is pure joy. He is light and life and love. He has taught me there are no small accomplishments; he has taught me to celebrate little moments and to believe in big miracles. I can't imagine my life without him. 

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

I look back on Eli's time in the NICU, at the level of medical care he required at home, and at all of his surgeries, and sometimes I still can't believe that was our life. I never thought I could get through something like that. But I did. We did. And we're ok. I don't think I'm stronger than other parents, but I do think I'm resilient. Some of the things we went through in his early months--well, I didn't know I had it in me. I use that experience to put things in perspective now, to remind myself when things seem tough, that we've already been to hell and back and it turned out just fine.

Favorite Therapy Trick/Tool: 

Incorporate it into your everyday life--it doesn't have to be a structured activity.

Random question:  

What is your favorite vacation spot and why? 

Anywhere I can slow down and savor time. I love the beach and I love the mountains. Disney is one of my favorites too.

----

Also, read Stephanie's diagnosis story HERE, on her blog, Pacify Me. (Another commonality that we share...we Blog and have a love for expressing ourselves through the written word!)

We are so grateful to have Stephanie, her husband John and her gorgeous kids in our lives!

Stephanie and Eli

Eli: could he be any cuter?!?!

Big sister Evie and little brother Eli

Stephanie and John at their wedding. So sweet!

 

 

Therapy Setbacks and Successes

This week, we experienced a setback in Therapy. It wasn't the first time this has happened. Last year Wyatt was sick for about 2-3 months from December to mid-February. It was frustrating because he regressed in eating and some communication (because of croup, a tummy bug, and recurrent colds). He didn't want to eat many solids and he lost, yes LOST, nearly a pound in a month. At his one year check-up, he weighed a mere 14.5 pounds. The words "failure to thrive" at a group assessment appointment hit me like a Mac truck. Feeding and speech therapy definitely had a set back.

Thankfully, he rebounded and over the last year has gained 6 pounds and grew about 5 inches. He now feeds himself (he pretty much eats what we eat) and he is working on using utensils. He is signing and has a couple of words. He is still tiny, but we are proud of his progress.

This time, Wyatt had a set back in physical therapy. And it's kind of my fault.

Let me back up for a moment. Wyatt is not walking...independently. In October, Wyatt got fitted for, and received Sure Steps (click on the word to see the website) to support his walking. There are two stages of Sure Steps. One is a low ankle support to assist with strength and pronation:

 The other is a higher support, up over the calf, to help with his issues of buckling his knee (he doesn't like to squat). The ankle supports fit into the higher supports for control in both areas:

Fast forward to the past few weeks...We had a decent snow (enough to sled) a few weeks ago, and while taking him sledding for the first time, we had a mishap and his tiny ankle got twisted. We almost made a trip to the ER, but our PT said it wasn't broken, but probably strained. She recommended that we put his braces back on and give him rest.

This means that he has gingerly been using his left foot. He has not wanted to walk like he was before. We are, at this point, back where we were a few months ago. Another setback.

As initially frustrating as this was, I realized that these things happen. Sometimes with our kids it is two steps forward and one step back (literally and figuratively).

So what can we do?

Not all is even close to lost. While the PT portion of our therapy is slightly derailed, we can still focus on other areas. Therapy should not be an all-on assault, but rather a thoughtful execution of the current strengths. Gross or fine motor not moving forward? Focus on another area! In this case, we went back to focusing on speech and signing. And even though PT was at a setback, we saw progress in signing. Wyatt has added "shoes" and "book" to his signing capabilities! We were reading books and modeling signs, with hand-over-hand, guided instruction. And it paid off.

So if you have a stall in one area, be sure to move forward in another. A setback does not mean all is lost. Keep moving forward thoughtfully and you will likely still see growth.

Please Invite "A Wyatt"

Our lives, in the human experience, are built around community. We naturally want to be around others (for the most part). Dinners, parties, celebrations, events, activities: all are valued and shared experiences with others.

What are you doing in the near future?

Are you having a birthday party? A play date? Are you going to the zoo?

If so, I encourage you to invite A Wyatt.

I say "A" Wyatt because I'm not suggesting you necessarily invite him (no, I'm not shopping out my child). But I am suggesting that you just invite someone like Wyatt. In other words: invite a child who is differently abled, or even is culturally different.

This topic is relevant because I have read a few posts this week from friends who are completely elated because their child with a disability was invited - for the first time in some instances - to a birthday party or an event for a "typical" child. (We also have a culturally diverse family, as my nieces and nephew are bi-racial.)

Haven't thought about that much? Well, maybe you should.

An invitation of A Wyatt to an event has many benefits; to both the child (and family of that child) who is differently abled, or diverse...and to the person or family who is doing the inviting. You see, parents of what we, in the disability world, like to call "typical" children (note that I did not say normal) probably do not consciously pay attention to whom they invite to life events. You invite kids who are in your child's circle. That circle is likely comprised of kids who are very much like your child.

Well guess what? Diversity is out there. Your child will likely interact with someone who has a disability, or who is culturally different, sometime in their life. And when they do, I hope that they have been given the life experiences to know that the person is not weird or strange; but rather that your child knows how to value diversity and the differently abled.

Teaching value of all people is a very important lesson in life. Starting to teach that lesson at a young age is vastly important, IMHO. Eventually, we all will likely be disabled, or differently abled at some point in our lives. We all have differences in idealism's and culture. Whether it be heritage, or when we are old, injured or sick. Because inclusion and acceptance of what isn't "typical" is not yet automated in our culture, we need to be purposeful about it. Purposefulness means thoughtfully including a diversified sample (read: disability, culture, age, etc.) of children into your child's life circle.

So invite A Wyatt. And if you do actually invite Wyatt, I promise you, you...and your kids, will not be disappointed. We will be grateful. And your child, and family, just might make new [EXTRA]ordinary friends.

Here is Wyatt interacting in a group with typical kids. Our sitter's son (who is ethnically different than our family...yay!) has completely attached himself to Wyatt : ) Happiness!

BUDDIES! (with Wyatt showing his silly face!)

See how Connor takes care of Wyatt? Awesome! [PS, Eden is second from right]

Patience

Many people tell me that I must be so patient. Many people also have told me that having a child with special needs is a lesson in patience. This week, both of these statements have been either challenged or reinforced.

Having a pre-schooler, a girl pre-schooler at that, has it's own challenges. Eden is a piece of work. We love her dearly, but oh my word....I see her teens flashing before my eyes in the form of eye rolling, drama, attitude and defiance. Most days she is a very well behaved child, with manners and thoughtfulness. But this week has seemed like someone has forgotten that I am The Mom. It has required oodles of patience that I have not necessarily had. Repeating myself sixteen times (or more) is not my idea of fun.

Here is part of my day:

"Eden pick up your toys on the floor."

[two minutes later]

"Eden pick up your toys on the floor."

[two more minutes]

"Eden pick up your toys on the floor."

[and two more minutes]
"Eden pick up your toys on the floor."

No toys are picked up. I yell.

"EDEN PICK UP YOUR TOYS!!!!!!"

Eden cries. *SIGH*

Wyatt also likes to test my patience. For some reason, he loves to scratch his butt when I change his diaper. He has some real doozies. Diaper comes off, I pick up his feet to clean him....hands start scratching.

"Wyatt, stop."

[start cleaning again, Wyatt starts scratching]

"Wyatt, no!"

[put his hands on his chest, start cleaning, Wyatt scratches, putting his hands right in poop.]

"WYATT!! MOMMY SAID NO!"

[before I can clean hands, Wyatt puts fingers in mouth]

"WYYYYAAATTTTTT!"

[I yell, Wyatt cries]

I need to calm down. Kids do things and we cannot always control their actions. I try to have patience with both of my children. Let me clear this up: I do not have [EXTRA]ordinary patience because I have a child with special needs. I do not exhibit perfection in parenting. I am human and I get mad, and I get frustrated. And yes, sometimes, I yell.

I saw my reaction reiterated in an interaction that Eden had with Wyatt. They were playing together (which is awesome) and Eden got frustrated with Wyatt. Then I heard her produce a guttural "Ughhhhh!" She was mad that he had not been playing with her the way she wanted, and she responded with short patience. I took it as a teaching moment and talked her through the appropriate response. But I realized that she is modeling my sometime impatience.

I'm impatient about so many things, currently including Wyatt walking.

I was thinking this week, as many life happenings that weren't so happy, were happening: what if God had that little of patience for me? What if He got so frustrated with me and yelled at me after I had not listened the third (or sixteenth) time to Him? I am grateful that God has such patience for me. I am immensely thankful that I am able to have the grace He so selflessly hands out because He loves me that much. 

Patience is tough.

Patience is a work in progress.

Patience is a virtue.

So tomorrow, after Wyatt scratches his poop covered butt and I ask Eden to clean up her toys for the seventeenth time, I hope I remember God's grace and model that grace with my kids.