It’s been a while since I have shared anything about our journey with Jaxon. I wanted to let you know we now have an official diagnosis. Jaxon has mild to moderate autism. While we thought he might be on the spectrum, having an official diagnosis has opened up several avenues for Jaxon to get the therapy he desperately needs.
I met with a pediatric neurologist who came highly recommended by several parents who have children with autism. Getting an appointment with her usually takes several months, but the Lord was good and opened up an appointment for us pretty quickly. We saw the doctor on November 17 to discuss Jaxon’s situation. The doctor was very patient and reviewed all the notes I brought to the appointment. I put together a one-page summary of Jaxon’s struggles and backed it up with notes from therapy sessions.
We talked, and I explained that Jaxon was in therapy three days a week, two hours each session and that I couldn’t afford to do more. After reviewing my notes and asking questions, she determined Jaxon needed to go through an official autism evaluation at her office. The doctor suggested Jaxon needed up to 40 therapy hours a week, and I would not be able to afford it, so she needed to do a formal evaluation to send to his insurance company.
Let’s see what’s available
As we made our way to the front desk, she told the scheduling lady about my situation, that I was private paying for therapy and needed an appointment right away.
“Doc, you know your schedule is packed for months. I don’t know if we can get her back in that quick.”
“I know, but please check my schedule for anything as soon as possible,” the doctor replied.
The doctor walked away, and I stood there nervous and pondering in my mind how much longer we would have to wait. It could be many months before we would be back.
“I am looking at her schedule. What days are best for you?”
“Any day and time is fine with me.,” I replied.
She searched the calendar for what seemed like forever.
“Oh look, I have an opening on December 7 at 9:30,” she said excitingly. “Can you make that appointment?”
“Great. Now let’s see. I might not be able to get you in for a follow-up on the evaluation for a few months. I’m going to keep looking. You can get the evaluation done, but you may not get the results back for a few months. Let’s see what we have available.”
“At this point, I am grateful I got to see the doctor so quickly and that the ball is rolling,” I replied.
“Well, well,” she said. “You must be doing something right.”
“What do you mean?”
“I found an opening for a follow-up appointment on December 14 at 11:00. Can you make it that day?”
“Praise the Lord!” I shouted. “Yes, we can make it.” I couldn’t hide my excitement.
Truly the Lord gets all the credit because from everything I have read on Facebook in autism groups, getting an appointment with this pediatric neurologist can take several months. Getting an official diagnosis can take several months. Here I stand blessed because I started the process as soon as I got custodial custody on October 20, and not even one month later, I met with the doctor and had two more appointments for an official diagnosis before the end of the year.
Praise the Lord indeed!
On December 14, 2021, Jaxon was officially diagnosed with mild to moderate autism. While I sound excited, I am relieved to have a diagnosis so early. I have been told multiple times early intervention and therapy are of paramount importance. The earlier you can start treatment, the more your child will benefit.
I must thank the Lord for hearing my prayers and the prayers of so many praying for Jaxon. Even the therapists who have been meeting with Jaxon say it is unusual to get appointments so quickly. They do not see this happen very often, and it’s hard for those waiting.
It’s not an easy journey. As a custodial parent of a child with autism, not knowing what to do or how to help him is hard. What we think will work doesn’t. The money we spend on things we believe will help doesn’t always help and feels like a waste. Not being able to participate in everyday activities can be lonely and frustrating.
Many parents struggle daily to help their child, sometimes children, get through each day while they wait for an official diagnosis and direction on what to do next.
It can be exhausting mentally, emotionally, and physically.
For years, I watched autism from afar in other families, never fully comprehending what they go through daily. Sometimes I wonder if I could have done more to be supportive by giving them a break for a few hours, listening, or offering some assistance of some kind. Now I am walking those same roads, and I am so thankful for everyone who offers to help, listen, and pray for our family and Jaxon.
We are starting down a path that we pray will lead to a beautiful story. I have moments when I wonder what I will be like a few years from now as I get older and Jaxon gets older. Will I be able to still pick him up, carry him to the car, or run after him when he takes off running down the street? Will Jaxon be able to speak more, headbang less, and eat brightly colored foods?
The Lord has provided so much already, I know he sees Jaxon and us, and it gives me hope that I am not alone on this journey. Only the Lord knows what’s next, and I need to trust in his plan for my life and Jaxon. We will go through this autism journey together, and if sharing our story helps someone else, then my time is not wasted.
You may be one of those parents waiting for a diagnosis or an appointment. Please do not lose hope, but seek the Lord and ask him to open doors and provide everything you need to care for your child/children as you wait. The Lord cares for them, and you, and he is faithful.
Heavenly Father, each day I read story after story from parents struggling with their littles. Sometimes I read about multiple children in the same family, and their parents do everything they can to provide. Lord, I pray you would open doors for families to get the help they so desperately need. I pray for all those waiting on a diagnosis so they can get help. Lord, please provide comfort and strength to each one reading my story. Lord, I pray they are encouraged as they walk their own journey through the spectrum world. Father, thank you for providing everything I need to care for Jaxon. To you be the glory and honor forever and ever. In Jesus’ name, I pray, amen.
The Teaching Lady