For the next 30 days, I will write about my journey with Autism and process having a new daughter (Nala’s due date is March 12!). Whether it’s in journaling, blogging or preparing for a sermon, I find that writing down words helps me navigate my own emotions. I look forward to journeying through all this with you! If you want to join or learn what the Blogrimage is, click here!
Yesterday, Amreitha and I publicly shared, for the first time, Obi has been diagnosed with ASD (Autism Spectrum Disorder). You can see the picture and the writing below!
If you have questions or subjects you’d like me to cover, please let me know!
I feel like I’ve had two sons.
Until the age of two, Obi hit all of his milestones—crawling, walking and speaking over 40 words. He performed actions for songs and posed for pictures. He imitated our actions and smiled when seeing me. I haven’t seen my son act like this for over a year.
At age two, he stopped making eye contact, stopped engaging with humans, and stopped speaking all but one word. His tantrums started lasting hours instead of minutes and he no longer played catch. Obi is now 3 and has never called Amreitha or me “mom and dad.”
Thinking he’s stubborn or a late bloomer like his father, we brought him to a speech therapy center. After a team observed him for a couple of hours, they told us he needed to be evaluated for ASD (Autism Spectrum Disorder).
Amreitha and I never considered this possibility. Totally blindsided, I asked the therapists to repeat those words again. They did and our family entered a season of despair. Suddenly, like Obi, I lost my speaking ability.
I made a running list of all the dreams starting to die: potty training, Obi making friends, college, getting married, making me a grandpa, inheriting the family business, and living on his own.
After fighting for months and spending lots of money to get him officially evaluated, Obi received a diagnosis from two different doctors—regressive Autism.
1 in 37 boys are diagnosed with Autism.
Therapists told us there’s no hope for recovery and we shouldn’t grieve the loss of our son’s old personality. Rather, we should celebrate that he’s differently brained. We were told that Autism only moves in one direction—regression.
However, I do grieve. Facing this is the most painful challenge I’ve ever encountered. Tears, desperation, anger, and confusion have surrounded us. For months, I felt like I could pray for anything but my son.
Watching neurotypical children give up on playing with my unresponsive son is a pain I never saw coming. I never thought I’d be a father to a child with special needs.
Autism comes from the Greek word “autos” which indicates removal from social interaction. It means Obi is alone.
I try to so hard to enter his world. I pray everyday he’s not alone. Without hesitation, I’d take any disorder from my son and enter his world.
In the midst of this darkness, God spoke to my pregnant wife, “I am healing your son.” Even against those who tell me this Autism only regresses, I cling to these words. I am unwilling to give up on hope. We are fighting for our son. In the last 6 months, we’ve read dozens of books, changed Obi’s diet and enrolled him in 6 therapy sessions a week.
In the first month, eye contact came back. In the second month, he started repeating words again. In the third month, he began pointing for the first time. In the fourth month, he started asking me to read books with him for the first time. In the fifth month, he started potty training. Last Tuesday, he peed in the toilet 11 times without one accident. We are progressing.
I’m okay with adjusting my dreams, and I don’t know what will happen in the future, but I will not give up on hope—while celebrating what makes Obi special and different.
God did not give Obi a disorder, but I believe God will use this for good. God will not leave Obi alone. Autism does not define Obi—God does.
I’m sharing this so you will join us in prayer, support, and this overcoming story. We can’t do this alone. Thank you to all who have gotten us this far.
All in all, as for me and my house, we will praise Jesus. We won’t just glorify God at the beginning or the end, but right here in the middle of the storm.