Our lives became a little [EXTRA] special on February 15, 2011 in a way we never expected.

This is about our journey and the [EXTRA]ordinary people we meet along the way.

Wednesday, February 27, 2013

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!


Monday, February 11, 2013

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.

Friday, February 8, 2013

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]

Saturday, February 2, 2013


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 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.]


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


[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.