Inspiration Through Opportunity*

Inspiration Through Opportunity*

By Kristen Faulkner Pfafftown, NC

Nearly eight years ago, our son, Ethan, was born. We had no idea what was in store for us — even before we got the news Ethan has Down syndrome! My husband, Scott, and I chose to focus on our baby and not the fact that he was sporting an extra chromosome. While we appreciated people further along in this journey offering us support, it was overwhelming to hear about what their older kids were doing. We just wanted to love Ethan and enjoy his babyhood...

We immediately enrolled Ethan in Early Intervention (EI). Monthly home visits increased to weekly with constant reassurance that Ethan was “right where we expect him to be.” Not having other children or direct involvement with other children with DS, those words were blissful music.

Ethan will be a superstar and prove everyone wrong about how successful a person with Down syndrome can be!

Time passed and it became obvious Ethan was not where he should be developmentally. We asked for more EI visits, physical, occupational and speech therapy. The news was discouraging with limited therapy options and an hour plus drive to see a private pediatric therapist. Our speech requests were denied since “children with DS don’t talk until they are older than three anyway.” After running in circles trying to get Ethan the necessary services, a door opened… across the country!

Based on his needs, Ethan was accepted into a five-star developmental day preschool program, passing over six children on the waiting list ahead of him. It was heart-wrenching to leave our family, friends and everything familiar to give Ethan the opportunity to catch up in his development in an inclusive preschool with all of his therapists in one setting. We felt we had to take the chance. We were so fortunate to have found such an amazing school.

We were confident Ethan would catch up and prove that children with DS can do anything if given the opportunity!

 Unfortunately, Ethan’s health rapidly declined soon after we arrived in our new home. After four months of continuous infections, antibiotics, fevers and restless nights, a blood test revealed all of Ethan’s blood counts were dangerously low. Not just anemic, but requiring a blood transfusion.

A repeat CBC and a referral to our local children’s hospital confirmed Ethan was about to face the fight of his life — quite literally. Three months shy of his third birthday, Ethan was diagnosed with Acute Lymphoblastic Leukemia (ALL) and underwent surgery to have a port-a-cath placed in his chest to begin chemotherapy treatment.

Over the course of the nearly three-year course of treatment, including daily doses of chemotherapy, Ethan was hospitalized countless times. (The parking deck employees actually thought that I was an employee because they “saw me all the time.”) From blood infections and pneumonia, to an actual Code Blue and induced coma in the PICU due to a bronchoscopy gone terribly wrong, the hospital was our home away from home.

During his treatment we discovered Ethan also had dysphasia and required thickened liquids, severe acid reflux and a B-cell deficiency. These discoveries added to Ethan’s time in the hospital due to aspirate pneumonia from both food being swallowed AND reflux coming back up. We couldn’t focus on therapy. Our main concern was for Ethan to beat his battle with cancer.

When we could finally claim victory over the cancer, I began my own inner battle. I needed to move on to the next challenges…walking…talking…chewing food….

It has been incredibly difficult to watch children younger than Ethan surpass him in their development. To see children — born years after Ethan — walking or communicating leaves emptiness within my husband and me. But, we continued to remind ourselves that chemo and hospitalizations are not a desirable combination on any day, particularly for a child with special needs who developmentally may rapidly regress.

For some reason, Scott and I focused on walking. I think we just wanted him to be up and about with his peers. I figured that if Ethan was running around with other kids, communication would soon follow. The same was true with oral motor skills and eating...if other kids were doing it, so would Ethan. We had to start somewhere; and, for us, that was walking.

A year after finishing treatment, Ethan still did not attempt to walk or do more than minimal weight bearing. Someone told me about a rare neurological condition called Tethered Cord Syndrome (TCS). The more I looked into it, I felt there was a strong possibility that Ethan had TCS. I asked the doctor, a local neurosurgeon, to order an MRI to confirm the diagnosis. He refused, saying TCS “is not Down syndrome-related.” I persisted and finally, nearly a year later, a MRI confirmed Ethan had been born with TCS.

This taught me an important lesson about following instincts. When I have a gut feeling about something regarding Ethan, I pay attention. I urge other parents to do so, too.

Three months ago, a different neurosurgeon performed the surgical repair. The new doctor said there was no doubt Ethan needed the surgery and that it was likely the main cause of his slow growth and difficulty with walking. Since the surgery, we have seen an amazing improvement in Ethan’s walking. He is visibly excited to be up and independent.

Technically, Ethan’s needs classify him as “severe and profound delayed.” This still brings moments of sadness. We remind ourselves that this sweet child of ours has faced more challenges than average. In addition to everything else, Ethan has also been diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS), a form of autism.

Because of Ethan’s severe delays, I feared he would never get to know students outside of his classroom, but his neighboring students love Ethan! My son is a little celebrity at school. The kids say “hi” and “bye” to Ethan in his very own ESL (Ethan Sign Language). His fellow students want to help him walk and learn. They want to know Ethan. The kids describe Ethan as sweet, fun, nice, loving, friendly, smart and walking. They see a friend who is a good kid, likes to play, is part of their school family and says "hello" in a special way.

Recently, some of the students wrote letters to Ethan. When I read them, my heart bursts with happiness and pride:

• “When you laugh, it makes me happy.”

• “I love having you in our class.”

• “Ethan, you’re awesome!”

• “You are an intelligent person.”

• “You make a difference in my life.”

• “Every time you come in our classroom, if someone is sad and you give them a smile, then they feel happy again.”

• “I have seen you mad, sad, happy, and glad. I have seen all your feelings. I love being with you.”

• “You’re really not that different than me — you just have harder hair.”

• “After getting to know him, my children grew to love Ethan and realized the beauty of children with special needs.” (from a parent and teacher)

Ethan’s school principal says:

Ethan brings such a great perspective to our daily lives.  He is absolutely the most popular young man in our school! Our students love him for who he is.  They have learned about his struggles and assist him in such a caring and loving way. They do not see him as “different,” they see him as “theirs.” They embrace him and help him learn..and all the while he is helping them learn...he helps us all learn about mutual respect, persistence, consistency, patience, kindness, and genuine happiness. We are better because we know Ethan.

Over the past few years, I have found myself feeling as if I didn’t belong in the DS “club” anymore because of Ethan’s delays. We did not fit the profile of a DS “superstar.” That felt very isolating.

Now, while Ethan may never be the keynote speaker at a podium or a world-class athlete, I know that he is a superstar in his own right. Ethan has already overcome so many obstacles in his life and has inspired so many people. Today, I celebrate my son and his successes, be it nail trimming without a tantrum or that first independent step.

*Reprinted from 2009 by request, original blog reference here.