Sunday, February 10, 2019

Observations and lessons learned while traveling with a child with special needs

We had a quick trip to Cleveland-less than 48 hours round trip! We like our new provider, he is brilliant. Our appointment lasted about 4 hours. We have a plan in place. We have a myriad of lab tests ordered that once the results are back, will further help to guide us. Here are some nuggets I have gleaned from our trip:

1. Prayer works. I don’t mean like a genie who grants me a wish. God hears our prayers and the prayers of others on behalf of us. Our first travel day-Monday-went smoothly and I give that credit to God for answering prayer. It’s okay to ask for intercession from others! Thankful for my community of prayer warriors.

2. Special needs families live in a totally different way than “typical” families. The planning is intense. We are always hypervigilant and on high alert, attending to our child’s needs and proactively trying to intervene before things go awry. Structure and planning help things to go more smoothly.

3. There are still genuinely nice people in the world. A kind and compassionate mom we didn’t know showed me kindness on two returning flights. Luke was really struggling and I was receiving the brunt of it. To actually be SEEN and not judged was a gift. We need more people like her in the world.

4. Roll with the punches and keep your sense of humor. Be as flexible as possible. Our challenges to get through security in Cleveland was truly comical. First time I’ve ever been patted down by a female officer! Evidently, my insulin pump and Luke’s cochlear implants were a concern. Just remember that these hiccups will make for a great story one day!

5. Don’t be afraid to request help. Two of the best decisions were to ask my dad to come with us and to request wheelchair assistance from the airlines. An extra set of hands is invaluable. Having an escort and wheelchair to help us navigate a large airport and get Luke from Point A to Point B was such a lifesaver, especially when our gate was changed last minute.

6. It’s okay to grieve, but then appreciate what you have. I often miss our old life. The easy, “perfect” life. The life where we didn’t have to plan everything, the life with no meltdowns, the life without communication frustrations, the life before specialists and therapies, the life where money was abundant and life was fun. These thoughts often crop up when traveling for a medical appointment. I compare the life I am living to the life I used to live. But wake up Buttercup! Don’t miss the beauty and purpose of your current life. Others are watching. Your child needs you. Rise up. (Preaching to myself here.)

7. Brave is what you do and brave is who you are. Never forget this. There are so many unknowns and so many questions to answer. If your child isn’t getting the medical care they need or deserve, you need to look elsewhere. Yes, it’s scary. Yes, it’s expensive. But getting on that plane to see a new provider may be the very thing your child needs to begin his journey to healing.

8. Practice Gratitude. We can find many things (big and small) to be thankful for every single day. Diligently look for them. The trampoline in the doctor’s waiting area was definitely one of them!

9. Seek the advice of others. I suggest seeking advice from others who have been there done that (BTDT). The special needs moms you trust and align with in vision. The ones that are have been on the journey longer. The ones who have traveled with their special kiddos. These moms have great insight and are usually willing to share their wisdom.

10. Give yourself grace. You are doing the best you can and you are doing better than you think! You feel as though you have the weight of the world on your shoulders. But dear, it’s not for you to bare alone. Remember to practice small ways of self-care, even when traveling.

-Jo Anna

Thursday, January 24, 2019

Prayers appreciated- upcoming appointment for Luke

As most of you know, Luke became ill in March 2018 with a pediatric autoimmune neuropsychiatric disorder. To say that life has continued to be most challenging is an understatement. My dad, Luke, and I will be flying to Cleveland on Monday. Our appointment with the specialist is on Tuesday and we will fly back to NC on Wednesday.

I am asking for prayer, specifically in these ways:

*safety, health, and protection during the entire trip

*compliance from Luke in doing what is asked of him

*for Luke to be free from anxiety and fear

*no aggression or outbursts from Luke (especially in public)

*good, quiet behavior on flights

*kind, understanding airline staff and folks around us

*wisdom and discernment for the specialist

*good, productive first appointment

*for a treatment plan to be suggested that we can successfully implement, ultimately leading to reduction in symptoms and healing for Luke

We cannot thank you enough for your love, support, and prayers.

-Jo Anna

Sunday, January 20, 2019

Isn't it Ironic?

Life has a funny way of working things out. Things you never thought you would do or say often come to fruition later on in life. So ironic! I never cease to be amazed at how far I have come, ahem, or rather how much I have changed.

I never wanted to get married right out of college. Ha! Scott and I graduated and got married the very same month at the young age of 23.

I said I would never drive a minivan and be “that mom.” Ha-ha! Never say never. And by the way, I do love my minivan.

When we were going through the adoption process, our family felt strongly that we were not equipped to deal with a child who had a significant lifelong intellectual disability. And yet God gave us Luke!

Raise your hand if you hate being at the center of controversy and you avoid confrontation like the plague? This is sooooo me. And yet here we are, with a child who is deaf, who wears cochlear implants, who is nonverbal, and uses sign language. When we first brought Luke home, we received so much grief from others on both sides of the argument over the decision to give him the gift of hearing. Why, oh why, do people have to be so divided? Are we not his parents? Is it not our decision to make? EVERY person’s story is different. One size doesn’t fit all. Let me assure you that we have Luke’s best interests at heart.

You see where I’m getting at don’t you?

Life is ever changing. The process of learning and growing never ends until you take your last breath on this earth.

Let’s talk about advocacy for a child who had multiple specials needs. School issues, medical insurance issues, provider issues, communication issues, therapy issues, childcare issues, lack of resources available. Not to mention there is NEVER enough time or money!

I can tell you from experience, that when a child receives a diagnosis of the big A word (AUTISM), parents feel anxious and uncertain. The magnitude of the situation weighs so heavy. Too many unknowns to wrap one’s mind around. Almost immediately, parents move into the research and learning phase. So overwhelmed with all of the information and being inundated by differing opinions of various treatments available, parents often follow the advice of their beloved pediatrician. Traditional medicine compartmentalizes each symptom. The resulting norm is to send the child to multiple, different therapies to help the child narrow the gap between “normal” development and their deficit. The traditional medical community does not look at healing the root cause but at treating the symptoms.

After a while, we figured things out a bit. We found our way to navigate this world of special needs. Luke made some dietary changes that helped with behavior and we continued his therapies. In came our breath of fresh air, Kelly, and Luke began to blossom! He made remarkable progress in all areas over the span of 3 years. Although it has always been a dance of one step forward, two steps back—we had come so far.

Everything came to a screeching halt in March 2018. Overnight, Luke developed vocal and physical tics, crying outbursts/anger episodes, changes in handwriting, and light sensitivity. We learned that Luke developed PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). Since then, he has lost about 3 years of gains, especially in the areas of behavior.

Isn’t it ironic that our longtime pediatrician who was the first one to diagnose Luke with PANDAS turned her back on us and couldn’t/wouldn’t try to help us? And that this disorder is controversial? And that our large, local pediatric healthcare system as well as an even larger one further east in the state doesn’t support or acknowledge this diagnosis? Why is it so hard to recognize PANDAS as a medical condition?

Thankfully, we have a new local pediatrician who is supportive. We have traveled to SC for medical appointments and we will be in Ohio later this month to see a specialist. All out of pocket. Traditional medicine has failed my son. Yes, we have tried the medication route. The waitlist for Applied Behavior Analysis Therapy is around a year. We have moved to an even cleaner diet and biomedical/functional medicine approach. We won’t quit on our son-we can’t! What would you do?

I have learned so much over the last 10 months. My perspective has broadened. I now see how naïve and close-minded I was on certain things prior to this journey. I am thankful for those dear ones who have helped me navigate this new world and not feel so alone. And so with that, I humbly encourage each one of you to learn, grow, and be open to new thoughts and possibilities.

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