Grieving the Child I Envisioned and Accepting the Child I Was Given

Dreaming Of A Future 

If you are anything like me then in your younger years you dreamed about what your life would be like when you were older. College, marriage, career, children…

When my husband and I were first married (seven years ago) we talked about starting a family. We envisioned having four children, raising them in the Catholic faith, sending them to private school, enrolling them in sports, and being their biggest cheerleaders. We had it all planned out and our life was going to be perfect! Looking back on what I envisioned as perfect makes me feel naive. After our first child was born we quickly realized our “vision” was far from reality.

This is where our parenting struggle began. 

Hindsight is 20/20

It was our first baby. We thought we were prepared. I had TONS of experience with children and I was convinced I knew what I was doing. I was quickly humbled when our son, Teddy, NEVER slept and NEVER stopped crying. You are probably thinking, “Duh, Rachel…babies do not sleep and they cry to tell you they have needs” however this was anything but normal. I did not want to complain and I most definitely did not want to ask for help. In my mind that was a sign of weakness.

Over the course of six months, I had taken Teddy to the pediatrician almost weekly. I was searching for an answer. I was convinced something was wrong with my child. At four months old I remember looking at the pediatrician with tears streaming down my face and asked him if my son could possibly have cancer. I was convinced my child was dying because why else would he cry for 20 hours a day. Our pediatrician is the most amazing doctor I have ever met. Having been my pediatrician my whole life he knew me very well. He wanted to help me and he offered to do blood work if it would ease my mind. The doctor told me over and over that Teddy had colic and acid reflux. He reassured me that it would all be better with time and sleep would happen as he grew. 

By 18 months Teddy still had never slept through the night, the reflux was still there, extreme meltdowns started occurring, and he had yet to say his first word. Everyone told me that boys talked later than girls and that we would hear the words by 2-years-old. 

The Call That Changed Our Lives 

After 18 long sleepless months, I finally was at my wit’s end and I made a call to Lucas County Help Me Grow (Early Intervention). I was not quite sure what they could do for me but I had run out of options. The day of Teddy’s evaluation I prayed that they would have answers or at the bare minimum accept him into the program. 

Teddy was accepted into the program and for the first time in nearly 2 years, I felt like my concerns were finally validated. 

The team of early intervention specialists observed several things about Teddy that I had never noticed. Ranging from weak fine motor skills, a tongue tie, a hand tremor, and of course his lack of speech. He began speech and occupational therapy along with weekly playgroups through the early intervention program. We continued to chug along but every session of therapy was met with meltdowns, noncompliance, and little progress.

The Google Rabbit Hole 

The more I googled the more I came across the similarities in Teddy’s behavior to those of an Autistic child. There are several immediate red flags in an Autism diagnosis and Teddy had a few but he did not have them all. At 2.5-years-old I decided to have him evaluated for Autism. I was not quite sure what would come out of an evaluation and I was very aware that a diagnosis would bar him from certain career paths. In March of 2019, Teddy was officially diagnosed with high-functioning Autism. After reviewing his test results and receiving the diagnosis I thought I would feel a sense of relief but it was anything but relief.

It was grief.

From day one I knew that something was not neurotypical about my child. I spent 2.5 years chasing an answer and now that I had my answer I had more questions but ultimately I had more realizations. My child would not be able to do all the things I had envisioned for him. Attending private school was no longer something attainable due to the need for an IEP and various therapies provided by a public school system. My child would spend more time sitting in a plethora of waiting rooms, therapy sessions, and doctors appointments than he would be playing sports or attending playgroups. 

Acceptance Of The Future 

I was never in denial over my son’s diagnosis but I did grapple with my feelings. It took me nine months to publicly share our struggle. But once I opened up I realized that my son was going to do so much more than I could have ever envisioned. Teddy is the most kind-hearted soul I have ever met. He is empathetic, hard-working, and truly embraces life. He attends ABA therapy, occupational therapy, speech therapy, and public preschool. My son works harder than anyone I know, adults included. He is making progress in every aspect of life and he even found his niche in a sport, swimming! 

Don’t get me wrong, I still have my days when I have a hard time looking forward. I wake up every morning (exhausted) and I take on yet another day of uncertainty about the future. However, I can say with confidence that I know in my heart it’s all going to be okay. At the end of the day, Autism is just a diagnosis and it will never define my child. He will go on to define his life in his way and I will always be right there cheering him on.