Monday, April 2, 2018


Today is Autism Awareness Day

Autism is a spectrum and neurodevelopmental disorder defined by persistent deficits in social communication and social interaction, accompanied by restricted, repetitive patterns of behavior, interests, or activities.

I have never met a parent who wants this diagnosis for their child. It is often full of lifelong challenges for the individual, as well as for the individual’s family. We do not romanticize Autism. We love our son and wish this condition didn’t exist.

So today, let me paint you a snapshot of our current world. Our son, Luke, is 8. He was internationally adopted at age 28 months and is also profoundly deaf. He wears cochlear implants and was officially diagnosed with moderate to severe autism at age 4.

Luke doesn’t understand safety and must be closely supervised at all times.

Luke often approaches strangers and wants to hold their hand or sit on their lap.

Luke is nonverbal and frequently makes very loud guttural noises.

Luke functions on very little sleep and our family often suffers from sleep deprivation.

When Luke gets mad or scared, his strength exceeds a grown man.

Luke is a sensory seeking kid who loves deep pressure and vestibular input.

Luke smells everything, including people’s hands and feet.

Luke is very affectionate and loves to cuddle.

Luke’s emotions are extreme and change quickly. He is often joyful and full of exuberance, but he can be overcome with sadness or anger in an instant.

Activities of daily living such as hygiene and toileting require close supervision.

Getting Luke’s hair cut or bloodwork taken are often insurmountable challenges.

Luke’s diet consists of a wide range of foods but he has no self-control.

Luke’s focus is almost solely on his own wants and needs.

Luke’s current obsessions are bubbles and balloons.
Luke suffers socially with his peers.

Luke loves technology.

Luke is both resourceful and smart.

Luke functions best in a structured setting with a set routine.

Life isn’t what we expected. Autism rocks our world every day. And although there are not nearly enough resources available for families affected by autism, we are thankful for friends, families, organizations, and resources that help us navigate life..

Sunday, February 21, 2016

Are you his mother?

So, this status update from 3 years ago today got me thinking.
The things people say: Primecare MD enters room saying "Buenos Dias!" Me-"Um, doctor, Luke is from the Philippines..." At hospital check-in, nurse continues to question me, "Are you sure you are not his foster mom?" Me- "Um, no..."

Disclaimer: I am not angry. I am not bashing. Although I do believe people should think before speaking, this is a personal reflection of my life meant in no way to offend.

Dear _____,

No, I didn't birth Luke. I wish I had, though. I'm told the day he was born, he was rushed to the hospital with respiratory distress. I wasn't there to comfort him, to advocate for him. I missed out on his first smile, his first steps, his first and second birthday. I wasn't there to question his communication delays, to intervene, and find help.

But he was CHOSEN. The name of the orphanage where he resided in the Philippines is CHOSEN CHILDREN. How cool is that? I prayed daily for "my sons to be" since June 2007. Luke was born January 2010. We met him and Jansen on May 2012.

Yes, I am his mother. Like any mother, I meet his needs. I change his diapers. (Yes, he is 6 and still in diapers at night. But potty training is going great!) I feed him, clothe him, bathe him,comfort him, and am up with him in the middle of the night. I am his biggest cheerleader. I love his contagious giggles and joy. He always keeps me on his toes with his mischief and curiosity!

You know the things most parents take for granted with their child, like eye contact or communication? We had to work HARD for these things. Nothing big or small is taken for granted.

I would do anything for him. Isn't that true of almost all mothers? I slept on the couch for 8 weeks with Luke while he was in a body cast last January. I have advocated tirelessly for his school services. I have traveled to Duke, UNC, MUSC, and Wake Forest Baptist Health to see specialist after specialist. I have asked for help and education from Early Intervention, Family Support Network of Forsyth County, Austism Society of NC. I've read and learned so much about the needs of adopted children, attachment, deafness, autism. I have taken sign language classes and classes on autism. I have taken him to autism therapy, speech therapy, OT, audiologist appts. I have been there with him every time he has had a procedure or surgery--I believe Monday will be his 8th. I have needed to be creative with safety concerns and a mountain of healthcare bills.

Please hear my heart-I do not write all this to pat myself on the back or receive praise.

I do it because I love Luke and he is MY SON.

Luke's special needs are much more than we ever could have anticipated. Life is far from what we expected it to be. But that doesn't make Luke a burden. That doesn't make Luke a mistake. He is neither of these things. I have grown as a person in countless ways all because one boy entered our family.

Yes, Luke is my son.

---Jo Anna

Tuesday, July 28, 2015

"High fives for Luke" T-shirt fundraiser and story behind it

For those of you that don't know Luke's story, he was adopted internationally 3 years ago at 28 months old. He was born deaf, diagnosed at 1 year old and had no mode of communication. It has been a long and unexpected journey trying to figure out the puzzle pieces that make up Luke! About 18 months ago, he was diagnosed with severe autism and Usher Syndrome-a genetic condition that causes blindness in early adulthood. Luke requires extensive autism therapy, occupational therapy, and speech therapy that are necessary to help him gain skills to be all that God has created him to be. He has no understanding of safety at this point and has great deficits in communication and social areas. He requires constant hands on attention. In the last year, he has made good progress in all areas of development! North Carolina is one of only a few states in which medical insurance companies are not required to cover autism therapy. All told, his therapies are over $2,000 a month. We are on a Medicaid waiting list that is 8-9 years long. We are now on year two of paying for his therapies and are tapped out! We would be so thankful if you could help support Luke's cause by purchasing a T-shirt!

It takes a village. Thank you dear ones.

-Jo Anna and family

Thursday, September 18, 2014

2 Years: Reflections and Lessons Learned from a Parent of a Child with Multiple Special Needs

Reflection can be a good thing. But getting lost in one's thoughts of lost dreams and misplaced expectations can leave one with tears gently falling. As I process lessons we have learned over the last two years, our reality no longer resembles our original vision.

Two years ago today, Luke had simultaneous bilateral cochlear implant surgery and our journey began.

Looking back, we were so naive and hopeful. Luke had been home via international adoption a mere 4 months. Luke was now loved unconditionally in our forever family and he had so many opportunities and resources available to help him reach his potential. He was 28 months old when surgery took place. Eye contact was very poor and he didn't seem interested in sign language. After Luke's hearing activation, we began intensive audio-verbal therapy. After a year of slow progress and Luke's eye contact was much improved, we reintroduced functional sign language and Luke's communication began to expand. In the last year, Luke has also been diagnosed with Usher Syndrome (deaf-blindness where vision loss usually begins around age 12), Autism Spectrum Disorder, and Sensory Processing Disorder.

Through the school of hard knocks, we learned some lessons from parenting having a child with cochlear implants and additional special needs. These lessons are applicable to any parent of an adopted child or child with any special need.

1. It's harder than the professionals tell you. Vast amounts of time are necessary for therapy and more intentional attention is needed at home for success. At the time of surgery, parents wear rose colored glasses. We only foresee positive outcomes. None of the professionals discuss the blood, sweat, and tears that have to go into it.

2. It can cause financial stress. Therapy is expensive. As are all the medical appointments and equipment costs. In our state, we don't qualify for Medicaid. Luke is on a Medicaid Waiver Waiting List that is 8-9 years long. This has put significant financial strain on our family.

3. Success doesn't look the same to everybody. Often times, cochlear implant surgery is the first step to finding out what else may be going on with one's child. Once Luke's hearing was "corrected", we were able to tease out what was not related to hearing loss. We were then able look objectively and accurately at the other issues at hand.

4. Celebrate successes no matter how small. Progress sometimes comes in many forms.

5. This is a long-term commitment. Stay focused and consistent.

6. Surround yourself with support. Our team of providers and therapists have been a lifeline and Godsend to our family. These people work tirelessly with our son and they also help support us in the journey. Connect with other families whose situations are similar.

7. Remember that the story isn't over yet. The ending isn't written. What we envisioned for our child may not come to be. It may look different. God sees the big picture, but we cannot. We must remain faithful knowing that God never leaves us and His will is perfect.

8. Sometimes you just have to let go. I have come to realize I cannot do it all and that is okay. Focus on what is important: God, Family, Friends/Community.

9. Take time for yourself. I am a better mother if I am refreshed and not frazzled. Whether it be a coffee date with a friend, or a weekend away at the beach, make sure you schedule times of respite.

10. Never stop learning. There are vast resources and support organizations available. Do not be afraid to seek out the help you need.

11. Say goodbye to the naysayers. Life is stressful enough. Just let those relationships go if they are negatively holding you back.

12. Give back to others. People have ministered to you. Do your part and pay it forward by helping others who may be just starting the journey. Lending a listening ear and showing genuine empathy blesses both the recipient and the giver.

13. Never give up. Always press on. You are the best advocate for your child. They need you. Even on the hard days remember this child is worth it.

Hope for today and strength for tomorrow,

Jo Anna

Friday, May 2, 2014

2 years already! Gotcha Day and an Unexpected Journey

Two years ago today we met our beautful sons.

We were so excited and the future was wide before us. We were new adoptive parents, new to navigating special needs and boys! The last two years have been full of joy, learning, advocacy, and also lots of tears and frustrations. Oh, how the Lord has grown each one of us, molded us, refined us and He is still doing so today in ways we would have never known had we not said yes to these two precious treasures.

The Bible tells us children a gift from God. And they are--each and every one.

1 Samuel 1:26-26 says "[Hannah to the Priest Eli] As surely as you live, my lord, I am the woman who stood here beside you praying to the LORD. I prayed for this child, and the LORD has granted me what I asked of him. So now I give him to the LORD. For his whole life he will be given over to the LORD." (NIV)

Specifically over the last year, we have seen Jansen make remarkable progress in all areas, especially academics and speech. He loves to help others, is always quick to give verbal praise, and is happiest when outside playing with friends or family.

In addition to Luke's special needs of profound bilateral hearing loss and global development delay, over the last year, he has also been diagnosed with Usher Syndrome (deaf-blindness) and Autism Spectrum Disorder. This boy's giggles are contagious. He overflows with joy. His eye contact has improved dramatically, as well as his listening skills thanks to countless audio verbal therapy sessions and cochlear implant technology. He is now really catching on to sign language and has more than 10 signs he uses regularly. We are excited to see what God has in store for this precious puzzle who has stolen our hearts!

I will leave you with the following story that portrays our family's adventure, as well as many others.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

Monday, January 6, 2014

Happy 4th Birthday Luke and Mom's two wishes

Luke loves technology. This picture accurately portrays our little man. Playing on the IPad makes his day.

Luke continues to grow and make strides developmentally in all areas. His eye contact, appropriate displays of affection, and listening skills are his 3 greatest areas of improvement. Luke has a long road ahead of him, but we are thankful for his accomplishments this far. We have a great network of providers who truly have Luke's best interests at heart.

Two attainable goals I would love to see Luke accomplish this year are:
1. Begin speaking some basic words
2. Successful potty training

Mark 10:27
Jesus looked at them and said, “With man this is impossible, but not with God; all things are possible with God.”

Happy 4th birthday to the little boy who holds the key to my heart more fiercely than I could ever imagine, who drives me crazy at times, and who has brought me to my knees in prayer more than anyone or anything else in my life. I can't imagine what life would be without you.

Friday, December 27, 2013

2013- The Year in Review

1.a division or contrast between two things that are or are represented as being opposed or entirely different.

This one word accurately portrays our year. Trials. Love poured out. We have felt so loved by family and friends this year. Sharing life with others has made our journey more joyful and genuine, even in the hard times.

I'm not going to lie. The last 5 years have been difficult for our family in numerous ways: financially, physically, educationally, etc. Each year the intensity has multiplied. Nonetheless, we are thankful. We are thankful for the time and resources God has given us. God never leaves us or forsakes us. We have been saddened to see friends and family go through unthinkable hardships and yet remain hopeful and steadfast. We have witnessed beauty for ashes.

Some of our 2013 highlights and lowlights:

January- Luke began attending the Hearing Impaired Preschool program at Diggs-Latham Elementary. I traveled to London and had a fabulous time with one of my closest and dearest friends.

February-Scott started a new job at Wake Forest Baptist Health as director of the Cancer Center Pharmacy. Scott was a victim of an automobile accident but only sustained minor injuries. Due to multiple ear infections, Luke had surgery to insert ear tubes for drainage.

March-Luke's genetics appointment revealed 2 DNA variants associated with Usher Syndrome (deaf/blindness syndrome). Thankfully, no visual symptoms are present yet, which means no diagnosis is necessary at this time.

April, May-Scott attended Summit9- a national adoption conference in Nashville, TN. We celebrated Luke and Jansen being home one year.

June, July-Jo Anna and kids traveled to PA twice to visit family. We made a stop in OH to visit the Robinson family. We visited Louisville, KY. Our family celebrated Rachael's 13th birthday week at Myrtle Beach. She also had a party with 11 of her closest friends which included a limo ride, pizza at Mellow Mushroom, and dessert at Midtown Café.

August, September-Jansen started kindergarten at Diggs-Latham Elementary School.

October, November-This was the 5th year that Scott volunteered at the Together for Adoption Conference. This year, the event took place in Louisville, KY. Luke had surgery, once again, to insert ear tubes.

December- Scott got a concussion at work, tore a ligament in his foot, and suffered from an awful GI bug that required a hospital visit.

We are looking forward to see what God has in store for us in 2014.

Jo Anna