Josiah is ten years old. It’s hard for us to believe that a decade has passed since our sweet boy was born. When we found out that I was expecting Josiah, I was going through a particularly difficult time in my life. His birth brought so much joy and hope, and he was truly such a blessing to us all. Sadly, just seven days after Josiah was born, our beautiful baby became very sick. I went to pick him up to feed him, and I realized that he was burning up with fever. We called the UNC nurse helpline for advice since it was on a weekend and our doctor’s office was closed. I was told that I probably just had him over-dressed and swaddled too tightly. I took his clothes off and tried to nurse him, but he was still so hot and lethargic. A few minutes later, the nurse from UNC called back. She felt like her advice had been wrong, and she encouraged us to get him to the hospital as quickly as possible.
Upon arriving at ARMC, Josiah’s fever had spiked to 104 degrees. After a spinal tap and CAT scan, it was determined that Josiah had some form of meningitis and that he had a small brain bleed. We were loaded into an ambulance and sent to Duke Hospital. Josiah was treated with several different antibiotics and antiviral medications while the doctors tried to determine exactly what type of meningitis he had. The testing of his spinal fluid had been inconclusive because he tested positive for two different forms of meningitis. His doctors opted to treat him for the more life threatening form. Josiah had a PICC line placed and he was released via home health care. We were given the job of administering IV antiviral medication every eight hours for the next 21 days. After the 21 days and another spinal tap, we were told that Josiah was medically healthy. We were so thankful that our baby was alive and that we could now put this all behind us.
By the time Josiah reached 18 months, it was becoming painfully obvious that he was physically healthy but something about his neurological development was very off. My husband Jeremy and I sat down one night and pulled up the warning signs for a child with Autism. It was like reading a perfect description of Josiah. The next morning I called our pediatrician and got a referral for a developmental evaluation. Josiah began therapy, and, at the age of two, he was officially diagnosed with Autism.
After the initial diagnosis, we enrolled Josiah in every therapy afforded to us. We took him to a myriad of specialists, and we had brain scans, genetic testing, and extensive blood work done. Our hope was that, with such early interventions, Josiah would make huge strides in his development. But this just never happened. In the face of countless hours of therapy each week, we never saw significant and lasting changes for the better. Over the years, it has become clear to Josiah’s doctors and to us that Josiah has Autism “AND”…. We may never know what the “AND” is exactly. Our suspicions are that he sustained brain damage from his early battle with meningitis. Knowing the “AND” won’t change what “IS.” In the words of our doctor, “Josiah is non-verbal, and has global developmental delay characterized by severe range intellectual disability. He has marked sensory dysregulation. Josiah is markedly impulsive and has very limited affect control. The above are all drivers of Josiah’s severe behavioral challenges. These behaviors include periods of marked hyperactivity and periods of marked agitation. Safety can be compromised during these episodes due to impulsive flight/running/escape, climbing, or ingestion of non-food items, or aggression towards himself or others.”
We have had multiple doctors and therapist communicate to us that Josiah’s Autism is more severe than any other child they have worked with. But what they also communicate to us is the love and affection they see in our boy. His wonderful teacher tells us of how hard he works to last the 45 minutes he attends school each day. And these attributes in our son make us immensely proud! We want to care for Josiah for the rest of his life. Our endeavor and prayer each day is that the Lord will give us wisdom to understand how we can meet his needs. We pray that Jesus will give Josiah a unique understanding of who He is and that knowing Jesus will bring him comfort and peace. And we pray for Joy. Joy for our sweet boy in the midst of facing the difficult and often painful obstacles he encounters daily. And Joy for us as we learn the true meaning of unconditional love.
*Please see the “SPD” tab to get a better understanding of how Josiah’s sensory issues affect him daily.
