This is one of my best friends, Nikki. She and I have been friends for many years. This is the story of her son’s autism diagnosis. I asked Nikki if she would be interested in writing a post for the blog, and she so graciously agreed. It is surreal when one of your close friends walks through a diagnosis. There was a point in the process that I flat out told her not to hold back with me. I wanted her to know that she could throw not only all of her questions at me, but more importantly how she was feeling; the good, the bad, and the very ugly. I wanted her to know that not only did I understand her devastation, but that I would never be offended by it. Her need to mourn the dreams she had for Andy’s life had nothing to do with Everett’s current life. If I couldn’t help her with what was going on, then who could?!? We have both helped each other in so many ways over the past year. I am so proud of her and Nathaniel with how they have navigated this process with Andy. And y’all… Their little boy is the most precious thing, and not just because he likes me. Andy has already made so much progress in the last few months, and I can’t wait to watch him grow!
Hi! My name is Nikki Darwin Clark. I am the wife of Nathaniel and mom of Alex and Andy. Andy, my three-year-old son, was diagnosed with Autism Spectrum Disorder on January 30, 2020. Our family journey to this diagnosis began WAY before January. Liz is one of my very best friends, and we live in the same very rural town. Here is my Andy story.
Andy was born in October of 2016. It was a typical pregnancy and a typical planned cesarean birth. The first year of Andy’s life was pretty typical… Andy was into EVERYTHING and had NO FEAR! I started noticing at about 16 months that he was behind in certain milestones that most kids over a year usually hit. He didn’t say “mama” or “dada”, he had no interest in playing with his big brother, barely slept, and was easily frustrated. Most people assured me that kids develop differently, but I felt like something was… different.
By 18 months, Andy still wasn’t communicating and had zero interest in other children he came in contact with. It was very hard to take him places because he would run off or throw tantrums. When we did go to the homes of friends and family, I was constantly “redecorating” so that Andy wouldn’t harm himself or break things in their homes. Our house looked bare because we had to Andy-proof everything. Again, I knew something was up, but most people would assure us that things were fine and he would “grow out of it” or “mature” soon.
At two years old, I addressed the issues I was seeing with Andy’s pediatrician. She recommended speech and occupational therapy after taking The Questionnaire (I’ll get to it). So, a friend referred me to a therapist and he began therapy at his preschool in January of 2017. When Andy was two and a half, he still wasn’t verbally communicating. He would grunt when he wanted something and began flapping his hands and hitting his tummy when he got excited.
I decided to start looking into a Neurotherapist in our area and learned REAL QUICK that we just don’t have any. So, I got on the Internet and asked friends and family about resources. We are very lucky to have Liz and she suggested places to call. This next sentence is the part that still makes me sick at my stomach. Everywhere we called, Memphis, Birmingham, Jackson, Atlanta, and Nashville, had an 18 to 24 month waiting list. I still can’t wrap my head around those waiting lists. You hear that early intervention is the key, but how can you get that help when your three-year-old will be five when we get a diagnosis? I cried, A LOT.
Luckily, Silver Linings in Huntsville, AL had a cancelation and we got in for a consultation in November of 2019. I was thrilled! People asked me how I felt about it and I was just relieved we might get some “answers”.
We got to the consultation and Nate and I answered The Questionnaire while the doctor watched Andy play. She suggested a full evaluation based on our answers and Andy’s behavior during our meeting. I was fine; I knew this day was coming. Nate was in shock. I ended up having to drive home that night.
On January 6, 2020, we had Andy’s evaluation and it was the most difficult thing we have ever had to do with him. We filled out The Questionnaire again and the doctor conducted her evaluation. We were in the room, but she asked us not to correct him or try to redirect him. We could hold him and comfort him, but she needed to observe his behavior. Well, watching your child throw fit after fit, hitting, biting, banging his head, and trying to get out of the room for four hours (with breaks naturally) was stressful. All three of us were exhausted.
January 30, 2020, Nate and I returned to the clinic to receive recommendations. At this point we knew what she would say. Autism Spectrum Disorder. We listened to the recommendations and got our copies of the reports and returned home. That’s when we realized that all we had was a diagnosis and some websites to check out. Other than that, it was up to us to find out what the next steps needed to be. This is the part I wasn’t expecting. I guess we thought a diagnosis meant answers. Well, it doesn’t. It means more questions.
Luckily, my sister Beth worked with early intervention when she began her career and she started researching along with me. I leaned on Liz. That week was when the mom guilt hit me for the first time. Did I cause this because I carried him for nine months? I went through everything I ate or came in contact with in my head. I cried for, no joke, two weeks. I had to buy one of those rose quartz rollers in the “As Seen On TV” section at Walmart to depuff my eyes so I could go teach English to teenagers.
Finally, I realized it wasn’t Andy that I was so devastatingly upset for; it was me. I was upset because he might not have sleepover parties. He might not play school sports. He might not go to college. He might not live independently. He might never find a partner and have a family of his own. These things seemed so important to me as a mom. But I had an Oprah moment where I realized that those things were about ME not Andy. Andy was the same Andy he had always been. He doesn’t care about those things. He cares about Ma and Da, Adax (Alex, his brother), and ChooChoos.
The books and blogs don’t lie about the grief. I grieved the loss of the child I imagined I would have. The little boy that would grow up typically. I know that might sound selfish, but it was real. What I do know is that there are no guarantees in life. When I was 14, I lost my little brother, and when I was 32, I lost my little sister and my father. What I would give to have just one more day with them! That’s when I realized that Andy was right in front of me wanting hugs and kisses and a different YouTube train video for the 20th time in one hour. I didn’t LOSE him; I just need to change my priorities and expectations. In that moment, I realized how truly lucky I am to have him.
We have been in therapy for a couple of months and Andy is loving it for the most part. I have learned lots of techniques and therapies that we can do at home. Andy is starting to communicate with us using new words and enjoys playing games with his big brother. Don’t get me wrong, some days are tough. I still cry sometimes. But I know that Andy is happy and thriving. He is teaching our family precious lessons about kindness, patience, and love. Life with Autism Spectrum Disorder changes daily, but it makes you see what’s really important.