January, 2024:
“Please God, let us get the news that we need to hear right now in order to help her. Whether or not it is what we were expecting to find out.” I find myself saying this prayer in the waiting room of the doctor’s office. We had been there for close to two hours at that point undergoing testing and evaluations. At the end of the evaluation, the doctor told us normally he can tell what’s going on with kids the same age as her, but he’s on the fence this time. He asked us to go sit in the waiting room while he tallied up the scores from his part of the evaluation that day so he could at least give us more of an indication of what to expect.
Finally, he comes out and calls us back to the office and begins to explain what his scores show. It’s what I was expecting to hear. What I’ve been considering as a possibility since last summer and slowly accepting. “Thank you, God.”
Skip ahead to beginning of March, where we receive the official diagnosis; Autism, level 2.
Agony in the Garden
“He advanced a little and fell prostrate in prayer, saying, ‘My Father, if it is possible, let this cup pass from me; yet, not as I will, but as you will.'”
Matthew 26: 39 NAB Holy Bible
The moment I share at the very beginning of this post is when I related to Jesus in the agony of the garden. The whole process of getting my daughter evaluated for Autism left me relating to this scene from the stations of the cross. I was living out the agony in the garden every day until finally receiving her diagnosis.
Early Suspicions
We first suspected something more was going on with Shiloh when I took a trip home last summer to visit my parents. Shiloh was already receiving early access services at home to help with behavior and speech, but during our trip things escalated. Shiloh would wander off in the house, and lost most communication abilities except for grunting. I could tell she felt stressed to be in a new environment.
One day I had to bring Shiloh downstairs to the bedroom where she was sleeping at in my parents house to keep her safe, and broke down because I felt defeated. Why are things so difficult with her? My sister came downstairs to join me and gently asked if I thought Shiloh could have autism. I just thought it was a speech delay and all the behavior was a result of her frustration with not being able to communicate. She also needed tubes put in her ears a few months prior to that trip, which convinced me it was just a speech delay as a result of not being able to hear things clearly for so long.
But that suggestion started making more and more sense to me, to the point where when we got home, I spoke with the specialists she was working with. They told me they also noticed some red flags that could suggest autism as well. I began the process of trying to get a referral for an evaluation.
Call after call I felt even more discouraged than before. Waitlists in this area are anywhere from 18 months to 2 years long! I felt so helpless. I even had to beg one of the places to put her on the waitlist; their response: “we’ll reluctantly add her on.”
Thankfully, my therapist told me about a child psychologist that just joined their office and I was able to get Shiloh seen in 6 months! I immediately felt relieved and started counting down the time until her evaluation. During that waiting period I was able to study books and met other families who also had kids with autism and were able to give me advice and offer resources.
How I felt during this process
I hated feeling like there was nothing I could do for Shiloh, and I think there should be a way for families to get seen sooner, but I have no idea how the system can get fixed or what the solution is. There might just be a shortage of people who complete these evaluations, in which case, there’s really nothing that can be done.
I had lots of moments where I was surrounded by doubt, worry, guilt and grief. I also had some well-intended comments from people who I believe were trying to be kind but ended up making me feel less understood. I think it’s one of those things where you can only truly understand the difficulties if you also are going through it.
When we got her diagnosis I felt relieved and validated that our struggles we had been experiencing at home were real. There was a reason for the difficult moments that made no sense to me at the time. There was a reason that she wouldn’t stay with me when we’d go out places. My anxiety about her running away or getting hurt felt justified. I don’t know how else to explain it.
I also felt surprised that she was diagnosed as a level 2, meaning that she will need more support. I guess I just assumed her diagnosis would have been more mild because she is speaking and making a lot of progress from where she started. She does well in school (they actually don’t witness a lot of the concerning behaviors we do at home). But then we have bad days and bad moments where the diagnosis really does make sense. I guess I’m just surprised at how surprised I was to get it. I thought I had already processed everything during the wait period.
God Provides
I do see how God played a role in this. He put people in my life when I needed them. The waiting period gave me enough time to learn more about autism. My therapist that I started seeing while I was pregnant with Shiloh, coincidentally, is the one that referred me to the psychologist that was able to get her in and give us answers. I kept meeting other families who had a child that had autism and have been able to get support and resources from them, as well as talk with others who understand the challenges that we are experiencing at this time.
I know that God has a plan for our Shiloh. And I can already see all the joy she brings to others. I also know that this is a cross that we will all carry together as a family, as we learn to adjust our way of life in order to best accommodate her struggles while still making sure our other kids get the experiences they need too. It’s a long road ahead, but with the right support, I know we can do it.
We are still learning more and processing this new diagnosis, and appreciate any prayers you can send our way.
