Life is filled with well-meaning advice, some of which sticks with you, while others fade into the background noise. There’s that golden nugget of wisdom you embrace and carry with you, and then there’s the advice you hear and think, “What were they smoking?”
One of the most memorable pieces of advice I received came from my grandmother when I was in third grade. After making it to the final round of the spelling bee, she excitedly told me, “Just remember, sweetie, spell it like it sounds!” That guidance seemed solid until I was faced with the word “anxious.” I began with “a, n” and froze, recalling her words. I ended up spelling it “c, h, i, o, u, s.” Spoiler alert: it didn’t end well. Looking back, I doubt any advice could have saved me from that spelling disaster, but the fact that her words echoed in my mind was telling.
Fast forward to three years ago, when I had that gut feeling my son was on the autism spectrum. After a diagnosis five months later, I found myself grappling with emotions I never expected. The first week of accepting this truth was the hardest, a whirlwind of despair and fear over what lay ahead for my little boy.
I cried in the shower, in the car, and when I tried to say the word “autism” to friends and family. I was mourning not just for him, but for the dreams I had for our family — soccer games, birthday parties, and sleepovers. My fantasy was replaced with worries about his future and my perceived inadequacy as a mother.
In my quest to understand autism, I turned to Google and devoured books on the subject, often feeling like I was stranded on an island of isolation. I didn’t express my feelings well, which my husband can attest to; he once thought I didn’t even like him in the early days of our relationship. I was overwhelmed and wrapped up in my grief.
Reaching out to family and friends for support was crucial. Their encouragement helped me push through, even if much of it didn’t resonate at the time. Yet a few pieces of advice have stuck with me.
You Know Your Child Better Than Anyone Else.
A dear couple I’ve known for years offered to meet with my husband and me during those early weeks. Their son is on the spectrum, and they shared their experience with us. They reminded me of the saying, “If you’ve met one child with autism, you’ve met one child with autism.” Autism isn’t a one-size-fits-all condition; every child has unique strengths and challenges. The professionals may be knowledgeable, but no one knows your child like you do.
I learned to stand up for my son — fire the therapist who doesn’t engage him, seek a new speech pathologist if the current one is wrong. You are your child’s best advocate, and it’s okay to be fierce about it.
This Diagnosis Doesn’t Define Who He Is.
In my emotional haze, I reached out to my mom, and she reassured me with a crucial truth: autism doesn’t overshadow my son’s essence. While I was busy advocating for him, I was losing sight of his personality — sweet, stubborn, hilarious, and loving. A diagnosis can provide clarity and direction, but it shouldn’t be the label that defines him.
Everything Will Be Okay… Eventually.
At one point, someone told me, “I’m sure everything will be just fine,” and I bristled. It sounded dismissive, as if my concerns were baseless. But this taught me about human nature; people often want to soothe feelings rather than engage with the reality of the situation. I realized that their intentions were good, and I needed to allow space for their support.
Find Your Support Network.
I actively sought connections with parents of children on the spectrum, joining local support groups. However, some of the strongest relationships formed naturally. While waiting in the lobby as my son attended therapy, I chatted with other caregivers. We bonded over shared experiences, from the struggles with insurance to the everyday chaos of raising a child on the spectrum. This community understood me.
Be selective about who you let into your circle. Life is too precious to waste on toxic relationships. Surround yourself with those who uplift you, who won’t judge you for the messiness of life.
You Will Have Good Days and Bad Days.
A “warrior mom” in my network once reminded me that the journey isn’t linear. While the early days were challenging, I still have my moments of tears and frustration. Whether it’s watching my son struggle with a toy or sending him off to school, the emotions can hit hard.
But there’s so much joy, too. I celebrate the milestones he achieves, and I know the journey continues.
To any mom who has recently received a diagnosis, I see you. The dreams you held may have shifted, but they can still be realized. There’s a vibrant life ahead full of friendships, love, and connections that enrich our lives.
Amid the challenges, remember that love is the foundation. That unconditional love is paramount, and it’s what your child needs most.
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Summary
This piece reflects on the emotional journey of coping with a child’s autism diagnosis and the valuable advice received along the way. It emphasizes the importance of self-advocacy, community support, and maintaining a focus on the child’s unique identity beyond their diagnosis.