Gratitude and Grief: Our Journey to an Autism Diagnosis

0
autism
©Karolina Grabowska via Canva.com

Our middle child was diagnosed with autism in 2022. The journey has been one of gratitude and grief.

I knew something was different about our precious boy, even from infancy, but I could never put my finger on it. Right after he was born and we were in the recovery room, he kept crying—more so wailing—loudly. My husband and I were perplexed by this, as our firstborn was quietly content and had the softest little mew rather than a cry. We asked the nurse what was wrong, and she said, “Oh, some babies just cry more than others.” This is, of course, true and a totally plausible explanation. However, looking back, I truly felt I knew our precious boy was special and had some unique challenges from these first moments.

He was a wonderful baby but had great difficulty self-soothing. He was extremely attached to me. I often said I had never felt so needed and so loved, which was both incredible and exhausting. In the toddler years, he continued to meet all of his milestones on time—walking, talking, making eye contact, etc. However, he was easily overwhelmed in social settings and could not seem to calm down. I joined a playgroup when he was one, and we often ended up leaving early because he would get so upset. He seemed to be in sensory overload. I felt isolated, discouraged, and hesitant to try new settings.

In preschool, he did well overall. His speech was difficult to understand, so we took him for an early intervention assessment. He did not qualify for early intervention because they reported that his language skills were excellent, and his speech delays were considered developmentally appropriate. This was both encouraging and disheartening, as I was one of the few people who could understand what he was saying. His teachers, peers, and other family members struggled to understand him, which was frustrating for him and others.

He did not grow out of the speech issues, so we began receiving private speech services and occupational therapy when he was in first grade. I remember asking our pediatrician and therapists if there was any chance he had autism, and I was always quickly assured that no, he was just a typical little boy his age and would likely outgrow the speech and social issues. This was good news, I supposed, but at the same time, I was watching my child continue to struggle and didn’t know how to support him.

He began saying how he felt different. He often said he had really big emotions and felt out of control and didn’t know why. Toward the end of first grade, I found out that he had been hiding under his desk on a regular basis. His teacher seemed to think this was a behavioral issue. I, however, sensed once again there was more going on.

We moved to Indiana the summer between his first and second grade years, and our children started public school for the first time. I immediately reached out to the school speech pathologist to ask about our son receiving speech services. Thanks to a dear friend’s recommendation, I requested a full battery assessment through the school. At our initial meeting, I was caught off guard when not only the speech pathologist was present but also my son’s second-grade teacher, the school psychologist, the principal, and a special education teacher. The special ed teacher asked me if anyone had ever mentioned autism because she had noticed a few things. I let the team know I was absolutely more than okay with assessing for this and had wanted him to be evaluated but had always been told he was not autistic.

When the day came for our meeting to discuss the evaluation findings, I was so nervous. Honestly, my biggest fear was that we would sit down and be told, “We found absolutely nothing. You just need to do a better job parenting and disciplining your child.” In other words, I was terrified that I had failed my child and was continually failing as a mother. Instead, the team let us know he qualified for an IEP based on the evaluations and observations. Autism was listed as the primary disability.

I left so relieved and thankful that we finally had some answers after eight years of wondering and wanting to help our son. I was thrilled he would begin receiving the services and accommodations he so desperately needed.

But very soon after the gratitude, I was overcome by a surprising flood of grief. Why was I grieving? This was what I had asked, hoped, and prayed for—an answer, services, and support for my child. But my mind started running through all the what-if scenarios. What if people think he’s weird? (They often do.) What if he can’t function in everyday life? (Sometimes, it’s really hard for him.) What if he can’t get married and have a family of his own one day? (As his mom, I dream of this for him, and he also talks about looking forward to this one day.)

There are even harder what-ifs that I don’t even like to say (or write) out loud. What if I don’t do enough as his mom? What if we don’t know how to help him? What if we (I, our family, the school, and society, collectively) fail our amazing kid, and he struggles—I mean really struggles—for his entire life? What happens when I’m not here one day to care for him?

I am beyond grateful to have such an amazing team working with my son and our family. The doctors, nurses, therapists, and school staff have truly gone above and beyond. I also have a wonderful community of friends who are walking this same journey with their children, and we listen, share, and support one another. My family and I have felt seen, heard, understood, and valued. Our son feels safe and comfortable openly talking about autism. Because of his amazing support system and how we insist autism is something special about him, not something “wrong” with him, he feels comfortable in his own skin and embraces who he is. Again, that’s not to say it’s not hard and that he doesn’t really struggle at times—he does, and our family does.

As I write this, we just finished up a long appointment at Riley Children’s for confirmation of diagnosis. The psychologist did, in fact, confirm the school and Riley team’s initial autism diagnosis. Once again, I am flooded with a mixture of emotions. On one hand, I am glad to know he will continue to qualify for additional services and resources in the community. But on the other hand, part of me still secretly hoped there might be a different, easier-to-solve explanation—one that could be “fixed” so he wouldn’t have these struggles throughout his life.

I’m learning both things can be true. I can struggle and grieve while also being grateful and filled with hope and joy. I look at our son and marvel at who he is and who he is becoming, and I am so thankful he is mine.

LEAVE A REPLY

Please enter your comment!
Please enter your name here

This site uses Akismet to reduce spam. Learn how your comment data is processed.