Our Journey to Noah’s Autism Diagnosis….Part 2.

Noah’s 1st Day of Pre-K

(if you missed part one, you can find it here). 

When Noah was 4 years old, Mark and I reached out to our pediatrician. For the longest time, we had thought Noah was simply a strong-willed child. I read the books, listened to podcasts about strong willed children, and talked to other moms around me, but something just wasn’t adding up. 

We went into the pediatrician’s office and told her everything that had been going on. (We had mentioned some of it in past appointments, but never in great detail like this.) Noah had started Pre K this year, and although we weren’t seeing huge behavioral problems in school, he was showing signs of anxiety. He wouldn’t raise his hand and engage much at school. He didn’t make a ton of friends. We noticed something was different.

I will never forget his Christmas concert that year. I had dressed him in this adorable Christmas sweater and forced him to wear it (That was a battle that morning at home and I literally had to hold him down to get this sweater on him.) He was so off that whole morning, and so anxious about having to go on stage to sing. We watched as he went up there with his class and proceeded to chew on his sweater sleeve as hard as he could. He never sang a single word (even though we knew he knew every word and loved to sing).

Our pediatrician suggested that we start testing at Kennedy Krieger, an institution about 2 hours away from us that specializes in children with developmental disabilities and disorders. I will tell you that the process of getting this started was awful. It took months to even get our first appointment, and being in the depths of despair like we were, it felt like years. We finally got an appointment for a telehealth screening, nearby, a couple months later. We met with a doctor for about 30 minutes and she watched Noah play in the background of this office from her screen. She told us that she believed he just had anxiety. We were told to continue additional testing at Kennedy Krieger. We had appointments for 2 full days of assessments, booked for the following month.

The following week I received an upsetting phone call from Kennedy Krieger. They called to confirm Noah’s upcoming appointments/assessments, and to let me know that our insurance would not be covering these assessments. They informed me that each assessment was going to cost over $8000 (EACH!) and asked how we would like to pay for it. I was sitting in my classroom when I got that phone call, and I remember literally just sitting there in silence. I knew there was no way we could come up with over $15,000 in a couple weeks. Nor did we have that amount of money in savings. I immediately got off the phone and cried. I felt like we were hitting a wall once again. 

After talking with our pediatrician again, she didn’t think it would be logical to pay out of pocket for those assessments. She was able to diagnose him with ADHD and Sensory Processing Disorder, but she also recommended we go through the public school system to get him tested, and then also seek out a child psychiatrist. (For time's sake, I am skipping a whole part where we somehow went to a child neurologist for a time. He agreed something was off and prescribed medicine. But we never got very far with him other than that.) 

A full 10 months after that first conversation with our pediatrician, we walked in the child psychiatrists office. We met with him first for a while, and then he met with Noah for a bit. He pulled us both in afterwards and said as straight blank as possible…. “Noah is autistic.” I could do all kinds of assessments and tests before I tell you that, however, from what you’ve already told me and meeting with him today, I have no doubt that he is on the autism spectrum.” 

I honestly didn’t cry. Looking back now, I am not sure why. The only emotion I really felt was relief. I finally understood why nothing up till that point had made sense. I now had an explanation for all of the breakdowns, the flipouts, the odd things that triggered Noah. It now all made sense. 

Noah's Kindergarten Graduation, 3 month after his diagnosis

I would be lying if I said that everything got better after that. I have learned from Dr. Wade (Noah’s psychiatrist) that I have to accept the fact that I have a child with autism. There will be good times where things seem good, but there will also be hard seasons. “This is normal”, he said. Honestly, this has been a hard reality to accept. Everytime we face a new, hard season, I struggle, however, I no longer struggle in silence.

 I now realize two things. First, that God is allowing us to walk through this journey to help others around us. I will never claim to have it all together or to be handling it all well. But I will promise to keep it real. I will continue to share my story in hopes that it can help just one person who feels alone in this journey. If you feel like you are drowning and no one gets it, I get it. You are not alone. Don’t hesitate to reach out for help and find others who get it. I am always open to talk to anyone, or just be a listening ear. Secondly, I believe God will use this situation and Noah, for His glory.  This gives me peace and hope.

Be encouraged today friends.