A Glimpse Inside the Mind of a Mom Raising a Child with Special Needs

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Navigating the complexities of our middle child’s unique brain has become a significant part of my husband’s and my daily life. When a rare medical diagnosis looms over your infant, it’s like being thrust into a chaotic whirlwind of uncertainty. You often find yourself wishing you could predict the future, but instead, you learn to embrace each moment as it comes.

This is where my brain steps in—a bustling hub of thoughts and emotions, often without a clear map. It’s a reservoir where only so much information can fit before it starts to overflow in unexpected and sometimes comical ways.

Remember those old public service announcements that equated a brain on drugs to an egg frying in a pan? If that’s the case, then a special needs mom’s brain is like a fully loaded omelet, packed with everything from cheese to veggies and a sprinkle of bacon. It’s a delightful mess of thoughts, experiences, and worries all rolled into one.

Questions race through my mind daily: Will he walk? Will he talk? Will he find love? Will he have friends? Will the world show him kindness? Are we financially secure? Will we ever have enough time? And then there’s the ever-elusive sleep.

Is this email too lengthy for my son’s teacher? My inner voice screams “YES,” yet I find myself revising and revising. But how can you condense your child’s story? So, I hit send and take a deep breath.

Sometimes, I wonder if I should have pursued a career in law; it would have made navigating the labyrinth of IEP paperwork a lot simpler. But, between managing my own students’ papers and sitting in the waiting room of occupational therapy, I realize I’m already juggling a full plate.

One of my students recently conquered a significant learning hurdle, and I feel the urge to share my pride with his mother, who sacrificed her career to support him. I picture her pacing the floor in the quiet of night, and I can’t help but feel a connection to her.

It’s illegal to communicate with parents in college, but I imagine her walking through life, grounded and strong. My student is thriving, learning differences and all, and I can’t help but feel a sense of triumph for both him and his mother. I try to high-five a mom from afar, but instead, I accidentally honk my horn. No one seems to notice, which is another aspect of the special needs mom brain—lots of isolation, highs and lows, and thoughts too intricate to share even with those closest to you.

At the grocery store, the checkout clerk with kind eyes is often the one who sees through the chaos. Years ago, she made the mistake of asking, “How’s your day?” This question can open the floodgates for a special needs mom. On that day, fresh from an IEP meeting, I shared everything with eager enthusiasm, detailing our advocacy efforts as if I had indeed studied law. Thankfully, there was no one in line behind me because the words kept rushing out.

As it turns out, she has a daughter with an IEP too, highlighting another trait of special needs moms: we are drawn to one another. Whether in stores or online, we find our tribe, united in our unique experiences.

Am I giving enough attention to my other children? I hope so. Are they learning compassion and inclusivity? I believe they are. For every challenge, there’s a unique gift that comes from the intertwined experiences of a special needs mom. Each small victory transforms into a monumental achievement, hard-earned reminders to stay hopeful. Life, after loss, is felt deeply, leading us to laugh harder, fight stronger, and dig deeper.

Sometimes, I wish I could earn Fitbit points for the constant movement of my mind. Before becoming a mom, overthinking was a burden; now, I see it as a superpower fueling my busy brain.

Paid the tutor (check). Rescheduled the endocrinology appointment (check). Forwarded the referral for neurological ophthalmology (done). Extra work request sent to the teacher (done). Music lessons are booked. I’ve sewn the taekwondo badge to the uniform—oops, I expected iron-on patches. Seven precious minutes for myself (a shower!). Homework completed (check). Fed the hungry horde (they certainly don’t eat at school). I mentally check off my imaginary list and remind myself to breathe.

Recently, my husband found a 21-year-old with the same condition as our son. He’s thriving and shares his story online, encouraging parents to persevere. I see my husband relax as he shares this news, realizing that the special needs dad brain also works tirelessly.

The young man mentions missing early interventions due to a late diagnosis, and I feel compelled to reach out. He seems to be doing fine, but I want to ensure he has the support he needs. My brain is a vault of knowledge on scientific, nutritional, and therapeutic aids, and at my core, I’m a mom whose heart feels limitless.

Speaking of which, I need to remind my husband about the vasectomy; I have plans to adopt every child with a rare condition. It’s already Wednesday, and we haven’t had our weekly conversation about our reproductive choices. It all comes back to that beautiful child of ours, destined to impact the world with his smile. That smile calms the chaos and brings joy, reminding me that he might just be the antidote to any lingering doubts.

Summary:

This article provides an intimate look into the life of a mother raising a child with special needs. It explores the emotional turmoil, advocacy efforts, and daily challenges she faces, all while celebrating the small victories that come from her unique experiences. The narrative highlights the connections formed with other moms in similar situations and emphasizes the importance of compassion and resilience in this journey.

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