The next great adventure

As 2015 comes to an end, so too does our Early Intervention services for Emelyn. And with the end of Early Intervention comes Emelyn’s next great adventure. On January 5, 2016, we send our 26 lb. two-year old off to East Salem Elementary School. Two days a week, she’ll be picked up by a bus in front of our house and taken off to Salem’s preschool special education program. While I wasn’t terribly sentimental about the change, another member of our family couldn’t seem to contain her emotions. Yes, Aubrey! When we casually mentioned Emelyn’s new adventure to Aubrey and she instantly became very sappy. At one point, in a high-pitched, shaky voice she declared, “I may actually cry tears of joy.” (She’s also quite concerned that Emelyn doesn’t have a book bag and school supplies. Emotional and practical, that girl.)

Emelyn and Aubrey visiting Santa in New Castle to
kick-off the Christmas season.

To Aubrey, going to school means Emelyn will learn to talk and walk. And to some extent, she’s right. While I don’t think Emelyn will be delivering messages to Aubrey’s East Salem friends, like Aubrey would like her to, I do have great hopes Emelyn will find her voice in preschool in 2016. It may not be spoken language, but maybe she’ll be able to find ways to “speak” to us using an alternative communications method. And between Emelyn’s curiosity about walking and the goals we put in her IEP (Individualized Education Program), walking independently in a gait trainer is a reasonable expectation this coming year for Emelyn.

For me, I’m also excited to have Emelyn around other children. Being at home this past year has given her the much needed one-on-one attention necessary to gain many new gross motor skills, not to mention some much needed weight. But now it’s time to work on her socialization skills too. While she always scores fairly high on the social/emotional developmental scales, she could definitely benefit from being around other children her age. 

2015 brought many exciting achievements for Emelyn. In the motor skill area, sitting independently without the fear she may topple over, manipulating objects with her hands in a much more meaningful way, transitioning from her belly to a sitting position, crawling on hands and knees/shins, pulling to stand, and even a little cruising on furniture were new for 2015. She’s also increased her receptive language skills, as well as, added a couple of inches of height and about six extra pounds of weight.  What will 2016 bring? While it’s hard to say exactly, we are very optimistic Emelyn’s next great adventure will bring more achievements for our curious little peanut in 2016. Merry Christmas and Happy New Year!

Our family musician

We’re not much of a musical family. Ask me the artist or name of a song and nine times out of ten, I’m going to get it wrong. My ability to carry a tune is equally as impressive. It’s looking like our most musical member of the family is going to be Emelyn. At a very early age we noticed her love of musical toys – you know the ones you banned from your house because they were loud and obnoxious – she loves those! And yes, after depriving Aubrey of them as a toddler, we basically have a full orchestra now – Fisher Price, VTech, LeapFrog – our inventory is vast. 

Emelyn with one of her favorite singing, light up toys
just before her 2nd birthday.

Where my ability to “name that tune” dramatically improves is in the genre of children’s songs. It’s sad, I know, but when Emelyn is downright inconsolable, all I have to do is start singing one of her favorites: Bingo, the Sesame Street theme song, Old McDonald, Itsy Bitsy Spider (bet you don’t know the second verse to Itsy Bitsy Spider), and so on. Yes, the little gal loves to be sung to and she doesn’t even care that my voice is far from in-tune.

When we discovered music therapy last year, we couldn’t help but give it a try. Offered through Easter Seals, the service coordinator for Emelyn’s Early Intervention services, it’s a small group therapy session with Emelyn’s peers. Some have developmental delays, but some do not. It’s very fast paced and surprisingly not chaotic. In the course of 45 minutes, they sing and play instruments to about ten songs. There are big drums and little drums, scarves and parachutes, tambourines and bells, wood blocks and triangles, and all the other fun, kid-friendly instruments you remember from elementary school. 

Emelyn drumming with her music buddies
at music therapy.

At first, Emelyn didn’t have the stamina to stay engaged through the entire class. A year ago, just sitting up for an hour at a time was exhausting, but adding singing, instruments, and other kids was more than she could handle. Recently, I had the chance to attend one of Emelyn’s music therapy sessions. It was exciting to see how far she’s come. She still does a lot of watching – she’s mesmerized by music therapist Hope’s guitar and she doesn’t quite know what to make of the other kids. But, she’s also occasionally using a mallet to hit the drum, shaking the bells during a song, or choosing between instruments when given the choice. She’s also going strong after the 45 minute class, which is impressive.

While it may not look all that impressive,
holding two objects, one in each hand, is a
relatively new skill for Emelyn.

Music therapy has lots of great benefits for kids like Emelyn. It can stimulate cognitive, behavioral, physical, emotional, and social skills. It can also help facilitate the development of communication skills, which is a top priority for Emelyn. Beyond the benefits, it’s been fun to give Emelyn an outlet for her love of music. Who knows, maybe she’ll be a musician someday…or at least be better at “name that tune” than her dear old mom.  

Emelyn has loved music therapist Hope's guitar from day one.

Emelyn’s Got The Moves

Last August (2014) Emelyn made her first moves. She pulled herself about two inches on the floor with her arms – army crawl style. The tiny distance she traveled made it almost questionable to call it a crawl, but we were beyond thrilled. At 17 months old, she was mobile!

Over the course of the next year Emelyn began using her arms and legs to perfect her army crawl. She became quite quick moving around the floor. In physical therapy we worked on trying to get her on all fours, i.e. attempting to get her belly off the floor. However, her upper body strength just wasn’t where it needed to be to bear the weight of her trunk on her arms. Still we persisted. In June Emelyn began showing us her ability to pull herself from her belly to a sitting position using her arms. Each time she did this little Emelyn-style push-up she was strengthening her arms. This led to her newest trick – her swivel hips crawl. I’m still not sure if I’d call it a full crawl since she’s sort of sitting on her legs, but it’s new and it’s pretty efficient for Emelyn. And depending on her route and destination, she uses her new crawl and old crawl interchangeably to get her where she needs to go.

It’s hard to say if Emelyn will ever crawl in typical fashion. I’ve said it before and I’ll say it again, developmentally speaking, Emelyn does what she wants, when she wants. As you saw in a previous post, we’re working on taking steps, but for Emelyn's independence, it’s exciting to see her desire to get herself around on her own. This little gal isn’t waiting around for us – like Elmo, she’s got the moves.

Prayers

I've always found comfort in the stories other parents share about their special needs journey. They were a key part of helping our family not only accept, but welcome our not so "normal" family. As I wrote my latest blog post, I thought maybe other families might find comfort in my words as well, so I submitted them to The Mighty, one of my favorite special needs blogs. You can link to The Mighty and check it out, or read it below. Thanks in advance for your prayers!

My daughter Emelyn’s first year was probably the toughest emotionally. Suddenly my picturesque family portrait wasn’t anything like I imagined — there’s maybe a wheelchair or leg braces or facial dysmorphisms or who knows what. The thought brought me to tears on more than a few occasions.

Now, two years later, I roll my eyes at that picturesque family portrait for more than a few reasons. First, I’m so grateful to have connected with other families who also have children with special needs, and those families have some of the most beautiful family portraits I’ve ever seen. The presence of breathing machines or posturing or forearm crutches is not what I see — it’s a family filled with love and hope that I see. Second, the thought that my family would be something I’d be sad or ashamed of still baffles me. Today, I count my blessings each and every day and will continue to do so no matter what comes next for our family.

As I look back at that first year, I realize now I was still a stranger to the special needs world — to my own situation. I was still very much on the outside, in denial you might say, looking into a world that scared me. It wasn’t “normal.” I pitied myself. I felt sorry for my child and for her sister who would one day see her as a burden. I’m not sure what changed, but I’d like to think it was all those little Emelyn giggles brought to you by God Himself. I didn’t one day wake up to this new perspective in my life, but I’m grateful my pity party didn’t last too long. 

Now, however, I become impatient with others who want to pity me. It’s unfair, I know. They’re outsiders, and it’s impossible to understand when you’re peeking into my life. It’s probably why I took so long to share our journey publicly. It was a regular occurrence to share Emelyn’s diagnosis and developmental delays, only to receive a somber and pitiful, “I’m so sorry,” or “I’ll pray for you,” from the other person. It’s not that I don’t want someone’s prayers. Emelyn is in my prayers every night, and I’m forever grateful to everyone, including perfect strangers, who also pray for her. But please don’t pray for my child because you feel sorry for her.

Pray for her the same as you pray for our “normal” (insert lots of sarcasm here) child. Pray she grows strong and healthy, stays safe, is always loved and happy, and knows and loves God. Those, my friends, are all I ask from you.

There’s no need for pity. I can promise you that Emelyn doesn’t feel sorry for herself. She finds herself to be quite funny, actually. And Emelyn’s big sister, Aubrey, certainly doesn’t see her little sister as a burden. To her, broccoli is a burden; her sister is the most important person in the world to her. I don’t ever see that changing. 

So, it’s with my insider’s view that I share my perspective on what I believe are God’s unique blessings. The next time a friend, co-worker, family member or perfect stranger tells you about their child’s unique challenge, whatever it might be, don’t apologize or take pity on them. Lift them up and share in their hope and love for their child. Don’t be afraid to ask questions. Ask about today. Ask about the future. Ask about ways to support their efforts. You don’t need to pretend to understand or be in their shoes. We get it — you’re on the outside looking in and we’re grateful to have you as a supporter sharing our journey.

And the next time you see a family portrait that isn’t a “normal” family, know that life may not be easy for that family, but it is a blessing nonetheless.

A special thanks to Aprille Tobey Photography for the amazing images of our not so "normal" family!

Facial dysmorphisms = beautiful!

It was December 5, 2013 - Emelyn was nine months old. It was our first meeting with a developmental pediatrician. I had no idea what to expect, but our pediatrician had told us Dr. Pineda would be very warm and kind. After nearly two hour of questions and evaluations, Dr. Pineda closed her laptop and began sharing her thoughts with us. She was indeed warm and kind, but her words still stung. She wasn’t telling us anything we didn’t already know, and therefore, she was confirming our fears. Terms like significantly delayed, medically complex, movement disorder, a number of possible syndromes, and more came from her mouth. Then, at the end, she said something to the effect of, “And you’re going to see a term in the notes that says facial dysmorphisms and I want to explain. Emelyn is a beautiful child, but she does have facial features that could indicate a syndrome…something genetic in nature. I just don’t want you to see that and think the worst or that your child isn’t beautiful, because she is.” For days following the appointment I remember looking at Emelyn and seeing nothing more than a beautiful little girl. Yes, her ears are slightly asymmetrical and her forehead is a bit prominent, but I wouldn’t call them dysmorphic. That sounds so ugly – like she’s disfigured. I’m grateful, however, to Dr. Pineda for easing us into the term that day. To be honest, I didn’t think much about Emelyn’s facial features as we moved past those early appointments. Other doctors would note facial dysmorphisms in their notes and I wouldn’t dwell on it, it was their job to document their medical findings.

Then, on September 16 of this year, we laid eyes on the other girls with DDX3X for the very first time. Patrick and I both looked through the tiny thumbnail pictures in the study sent to us by the genetic counselor and were amazed at how many of the girls resembled Emelyn. Then, that night we connected with other families on Facebook and began seeing family portraits, candid shots, and school photos of the other girls sharing Emelyn’s diagnosis. While our girls do have similar facial features, they also share similar smiles, expressions, and laughs. Other parents post pictures frequently of their daughter’s and I see our Emelyn in their daughter’s faces. They’re all so very beautiful and their smiles are filled with the same happiness as our Emelyn. It’s nothing short of amazing. With permission from some of the DDX3X parents, I’m sharing some of the other young ladies also diagnosed with DDX3X below. I know you’ll agree, our daughter’s share beautiful faces and endearing smiles!

Lucy | 17 months old | California

Emelyn (right) | 2 years old | Virginia
Emelyn is pictured with her big sister Aubrey.

Hadley Mae | 2 years old | Texas

Mila | 3 years old | Illinois

Sparrow | 3 years old | Washington

Vivi | 4 years old | Alabama

Morgan | 4 years old | Texas

Peyton | 4 years old | Illinois

Harper | 5 years old | Arkansas

Ashlyn (left) | 6 years old | Texas
Ashlyn is pictured with her big brother Cameron.

Kate | 7 years old | Oklahoma

Taytum | 7 years old | Alabama

Lanie | 8 years old | South Dakota

Alex | 9 years old | England

Alayna (middle) | 9 years old | California
Alayna is pictured with her big cousin
Lyric and little sister Presley.

MacKenna | 15 years old | Alberta, Canada

Marie | 16 years old | Ireland