By: Jenna Carter
Date: Jan. 3, 2018
“When you can’t find the silver lining, I will be here with you in the shadows.” — Unknown
Receiving a diagnosis of autism for your child, or any neurological condition, can be overwhelmingly frightening. Perhaps you had an inkling of what was to come, or perhaps you were completely unaware. Either way, in a heartbeat, your world is transformed.
The same child… but an entirely different future. This change isn’t just about your child; it extends to your entire family. For me, it felt as though a label had been stamped on both my son and myself. I feared that this label dictated our destiny. It was terrifying.
To complicate matters, those around me seemed to lack understanding or the ability to support me. I took my little boy to the appointment, filled with hope. Just look at him! He is perfect in every sense. Yet, despite my love for him, every day felt like an uphill battle. He struggled to sleep, was perpetually restless, and communication was nearly impossible. No matter how much effort I put into connecting with him, I felt like I was failing.
Then came the reality check—a paper with a diagnosis from the psychologist. Our child was autistic. In that moment, it felt as if time had stopped. My life, as I knew it, was irrevocably altered. I was caught in a whirlwind of emotions, wanting to fix everything while also feeling paralyzed. The weight of his diagnosis settled heavily on my shoulders, and nearly four years later, it remains.
Looking back at photos from when my son, Leo, was three fills me with sorrow. I have two wonderful boys, yet I struggle to revisit those memories. In this particular image, Leo is in constant motion, as he often was. He appears to be pushing away from me. I’m smiling, but inside I feel like I’m drowning in sweat and anxiety. We were at a public gathering, and there was no hiding the fact that my child was experiencing the world differently. He didn’t speak; he didn’t engage in play. Instead, he ran, he screamed, and anxiety consumed him.
After that day, I spent hours crying. It was one of those pivotal moments that forever etches itself in your memory. What many don’t realize is that part of the grieving process involves simply sitting with your feelings. It’s essential to acknowledge your sadness. I felt resentment for those who rushed me to see the bright side, who had no clue what I was enduring. They wanted to expedite my grief, and that wasn’t what I needed. I needed to confront the uncertainty of our future with significant autism, and that was perfectly valid.
I had to come to terms with the fact that this wasn’t something that would just disappear; it was a lifelong reality. We couldn’t escape it, and it would alter everything.
Pause for a moment and reflect on this. I was just a mother—like you—full of hope. I prepared, I prayed, and I welcomed a beautiful baby boy into the world, instantly falling in love. In those first few days, I envisioned a future filled with sweet conversations, hugs, baseball games, school plays, and choir concerts.
But everything changed. My son didn’t engage in those experiences, and I was left unsure if he ever would. No one could predict what lay ahead. I felt isolated, scared, and desperately needed a friend who wouldn’t try to “fix” things but would simply listen and allow me to express my sorrow.
What I truly yearned for was someone to sit with me in the darkness for a while. And that’s okay to admit. I wasn’t prepared to see the silver lining or count my blessings yet. I needed to process my emotions, and I believe it’s entirely acceptable to do so because, eventually, you will emerge stronger and ready to champion the most extraordinary human being. But first, I had to navigate those sorrowful moments and mourn the life I had envisioned before I could embrace the one I was given.
My hope for you, after navigating your own diagnosis journey, is to become that support for someone else. Allow them to express how difficult it is. Let them voice their anger towards autism and their feelings of being cheated. They need to hear these truths. It’s imperative to let them cry and feel lost. Be there for them—just like someone did for you.
Encourage them to articulate their frustrations and fears, to voice their feelings of inadequacy. Respond to those late-night texts and early morning calls. If they seem distant, reach out to them; that’s often when they need support the most. Simply showing up can make a world of difference. Help them take a moment for themselves, whether it’s a shower, a nap, or just a good cry.
Grief isn’t a linear journey. It may linger for days or even resurface unexpectedly. Your presence matters during this time. And when they’re ready, guide them toward the brighter side that follows the darkness. Help them see the beauty in providing a vulnerable child with the best possible life.
They will find their way, just as you did. Just as we all will. If this resonates with you, then you truly understand the experience of raising an autistic child. It’s not about love or commitment; it’s about navigating a path that can be terrifying and confusing.
Be kind.
For those who are interested in exploring pregnancy options, check out this link for an at-home insemination kit. Additionally, you can find authoritative insights on this topic at Modern Family Blog, and an excellent resource for pregnancy and home insemination can be found at the Mayo Clinic.
In summary, navigating the world of autism diagnosis is a profound journey marked by grief and acceptance. Allow yourself or someone you love to feel the weight of their emotions. Ultimately, connection and understanding will foster resilience and strength.