Margot’s Summer

“I'm not giving up, I'm not giving up, giving up, no not me
Even when nobody else believes
I'm not going down that easily
So don't give up on me“

- Andy Grammer

(Margot’s favorite song)

My daughter, Margot, smiles a lot. Like, a lot. But I’ve never seen her smile the way she did at summer camp last year.

After being diagnosed with Apraxia* and Global Developmental Delay** around the age of 3, a global pandemic causing virtual school/therapy and a series of other unfortunate circumstances, my husband and I were determined. Determined to “catch Margot up”, “accelerate her speech” and “get her ready for Kindergarten”. We searched high and low for a summer program that would be a good fit for Margot and our family. We were disappointed to learn we have nothing close to home. Ultimately, we decided on Camp Communicate at Speech Pathways in Oklahoma City. We packed up our 3 daughters (including 1 newborn) and our 55 pound dog then drove across the country for our 2 week adventure.

The camp was an intensive speech camp for Apraxia kiddos and kids diagnosed with Autism Spectrum Disorder. From the moment Margot walked in the door she was surrounded by support. Speech Language Pathologists, speech students, and other professionals were constantly at her side. Lots and lots of play based learning, and many therapy sessions. Their model was really something to see.

The parents were able to attend learning sessions, had the opportunity to network with other parents and my favorite, we were able to observe Margot amongst her peers. Because of COVID, we hadn’t been able to observe Margot at school in a long time.

My daughter has always been friendly, but she has never been understood. She has always played with others well, but had difficulty making same age friends on her own. Her symptoms make her seem immature and talk like a baby, for lack of a better phrase.

There was no hiding the confidence bursting from Margot during our observations. She was grinning ear to ear and barely looked up to notice us. She was focused and following directions. She was happy, truly happy. We quickly realized that Margot had never met anyone “like her”. She’s never had a friend the same age that “talked funny” or was hard to understand. She hadn’t had conversations with others using their augmented alternative communication devices (AAC). It was first time ever that a peer genuinely invited Margot for a play date.

We may not have caught Margot up in one summer and she didn’t just start speaking sentences over night. She was very successful at camp and the sounds and words she worked on improved greatly. However, the smile on Margot’s face was the boost of confidence was just what she needed to jump into Kindergarten. It reminded us to believe in Margot and what she is capable of, given lots of hard work and support.

With all of the resources and education in Nashville, our hometown, why don’t we have a camp here? I’ve made it my mission to utilize resources and our support systems here to find a camp(s) for Margot this summer. I’ll be Margot’s voice until she finds hers. Big or small, don’t give up on whatever your little one is battling.

— Ashley Kimball — Nashville Mom of 3

connect with her on instagram @ashleypittmankimball

*WHAT IS CHILDHOOD APRAXIA OF SPEECH?

Childhood apraxia of speech (CAS) is a motor speech disorder that makes it difficult for children to speak. Children with the diagnosis of apraxia of speech generally have a good understanding of language and know what they want to say. However, they have difficulty learning or carrying out the complex sequenced movements that are necessary for intelligible speech.

apraxia-kids.org

**A child with Global Developmental Delay (GDD) typically presents with a delay in multiple developmental areas. Areas of delay may include speech and language, social, cognition, play and motor skills. Children with GDD will typically present as younger, or behind, their typically developing peers.

www.mosaicearlyintervention.com.au/blog/global-developmental-delay

Diagnosis Day

If you’re reading this, there’s a decent chance you are a parent who has received a diagnosis for your child, maybe you’re still seeking a diagnosis, or perhaps you’re a provider who has witnessed families digest the news of a diagnosis.  Whether you are remembering a certain moment, longing for that moment, or trying desperately to block the moment out of your mind, you are not alone.  Within the disability community, I’ve heard the anniversary of a diagnosis referred to as: “D Day,” the day that I started to view my child differently, the doctor’s appointment when I was told my child would never be able to live alone, the date where our lives changed forever.  The list of descriptions go on and on.  Some of them may make us cringe, others make us smile, and many may make us cry.  Whatever your experience was, that date is significant. 

Every January 18th, my husband and I reminisce about the day we learned that our then five-month-old son, Will, had a rare genetic condition called Williams Syndrome. His cardiologist was the first to tell us that his heart condition looked like WS.  The blood test results from his geneticist would later confirm that he was in fact missing a set of genes on the 7th chromosome, confirming the WS diagnosis.  

We squeezed each other's hands so tightly and tears streamed down our faces.  The immediate days and weeks that followed are sort of a blur, but I remember moments.  I remember the moments when the anxiety and grief were so strong that I didn’t recognize myself.  I also remember the moments when loved ones said or did the perfect thing to remind me that it was all going to be ok.  He was going to be ok.  We were going to be ok and we were going to figure out this new normal together.  

It goes without saying that there were MANY moments in between before I really believed it was all going to be ok.  I will forever be on this complicated journey filled with a roller coaster of emotions that began on January 18, 2017.  HOWEVER, my husband and I decided that day that we would never let that date be a day to mourn.  We would celebrate every 1/18 because William deserves to be celebrated.  Because we want his sisters to grow up celebrating what makes our family unique, celebrating their own resilience as they manage the struggles of having a brother with a disability, and celebrating the differences in all people. We also just love a reason to celebrate :) 

Soooo every 1/18, we have a pizza party in the Lenihan house.  Little did we know when we established this tradition, that pizza would be one of the very few foods that Will likes to eat :).  We spend time talking about what Williams Syndrome is and why it means that Will has “extraordinary gifts and unique challenges ” (williams-syndrome.org).  It often ends with a dance party and we’re reminded of how far we’ve come since that diagnosis day.  There is more joy in our lives than we ever could have imagined. 

As Tulip continues to grow, I look forward to hearing all of your stories.  What was the diagnosis experience like for you?  How do you remember that date when it comes around each year?  We have so much to learn from each other and it often starts with sharing memories of a diagnosis, so we hope you’ll share yours with us.  It would be an honor.