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Tag: autism mom

  • You’re Not Listening to Her: A Medical Advocacy Story

    You’re Not Listening to Her: A Medical Advocacy Story

    This blog is a tag-team effort between me and AI—think of it as my over-caffeinated intern who spits out ideas while I handle the heavy lifting. I research, fact-check, edit, and fine-tune everything to make sure it sounds like me (not a robot with a thesaurus). AI helps with the grunt work, but the heart, style, and final say? That’s all me, baby.

    I want to tell a story about what happened to my daughter and me in the Canadian healthcare system, because I know we’re not alone. I’ve changed all the names for anonymity, but the story is, sadly, all too real.

    The Pediatrician We Trusted…At First

    Years ago, I was referred to a pediatrician for my daughter Ava. At the time, she was around six and suffering from chronic stomach pain, constipation, recurring croup, and constant anxiety related to school. 

    She had nightmares, meltdowns, and was being ostracized and bullied. I knew something deeper was going on. I didn’t have the words “autism” or “ADHD” yet, but my mom gut told me she was different—and struggling.

    Our pediatrician—we’ll call him Dr. McLecturepants—was very knowledgeable. Ava liked him. He was good at addressing her physical health issues. He took things seriously, referred us to specialists, and was often thorough. 

    But there were red flags. 

    Dismissed, Doubted, and Lectured

    Early on, I was struggling to get Ava to take medication. What I now know is ARFID, sensory aversion, and autistic rigidity was, back then, just a nightmare every time I had to administer meds. 

    Meltdowns, sobbing, trauma for both of us. 

    When I asked for help, he didn’t offer compassion. He gave me a five-minute lecture on how I needed to “take control” and “stop letting her run the show.” It was humiliating. I left feeling like a failure.

    From then on, I was nervous around him. I often wondered, would he speak to me this way if a man were in the room? I was a single mom. White. Tired. Not wealthy. He was a male doctor with a strong accent—possibly Middle Eastern—and although I didn’t want to bring culture or bias into it, I couldn’t ignore the power dynamic. 

    I wrestled with myself for even thinking that cultural background might play a role — not because I wanted to stereotype him, but because I’ve lived long enough to know that gender dynamics can be shaped by upbringing, culture, and society. Still, I sat with the discomfort of that thought and tried to focus on what I knew: I felt talked down to, and I didn’t feel respected.”

    I felt small. 

    Like I was being treated as a hysterical mom, not a capable one.

    Homeschooling: The Best Decision We Made

    When school became unbearable for my daughter, I started researching homeschooling options. It wasn’t a knee-jerk decision. I consulted experts (including a clinical psychologist), read studies, and made spreadsheets. I also began compiling information about ADHD and neurodivergence, trying to be prepared to make my case.

    Dr. McLecturepants dismissed homeschooling outright. Didn’t want to hear about the trauma Ava was experiencing. Didn’t care that her nightmares and pain disappeared within two weeks of being pulled from school. 

    He continued to disapprove, even when I brought up ADHD. That, at least, he was more receptive to, but the lectures didn’t stop. I kept going back because he was knowledgeable about ADHD, and I thought I needed that.

    Rather, I thought my daughter needed that, and I should just shut up and deal.

    The Diagnosis Battle

    But when I brought up autism? He shut it down. Said she couldn’t be autistic because she made eye contact. (Yes, really. Hello, 1955 called and they want their scrubs back)

    Eventually, I demanded a referral. I gave him research. I asked for a specific autism specialist recommended by a trusted friend. 

    McLecturepants reluctantly referred us, but warned me the doctor “diagnosed everyone” and other professionals didn’t like him. I couldn’t believe he was dragging me into some petty professional rivalry when my daughter’s health was on the line.

    The diagnosing doctor met with my daughter, gave a comprehensive evaluation, and said, “Yes. She’s autistic.” 

    I went through ALL the feelings that day—IYKYK—but one of the ones I never expected to feel was validation. Someone else finally listened to me and I wasn’t crazy, which is what my pediatrician had been making me feel like. 

    The specialist did say kiddo might not have ADHD, but I trusted my gut—because comorbidity is common, and I’d done the reading. I was more worried that McLecturepants would react poorly when he read the report, particularly the part about the specialist disagreeing with his diagnosis. 

    It’s not fun to feel you’re caught in a pissing match between two health “professionals,” which only magnified my feelings of “walking on eggshells” with McLecturepants.

    The Funding Form Fiasco

    Fast forward. The Disability Tax Credit needed renewing. We’d been working with a phenomenal ASD counsellor who’d seen Ava regularly and knew the extent of her challenges. The DTC forms went to Dr. McLecturepants. I was told it would take months to fill them out.

    I got emotional. After all, it was our only funding, given we’ve been on waiting lists for years with the Ontario Autism Program and Special Services at Home. (I’m looking directly at you, Doug Ford).

    McLecturepants ended up filling them out quickly over the holidays, which I appreciated—until I read them. He’d minimized kiddo’s struggles. Downplayed how much support she needs. Even checked the box saying her deficits would likely improve over time—as if autism isn’t a lifelong neurotype.

    When I first read what the pediatrician had written, I questioned everything about my reality. Maybe it wasn’t that bad? Maybe I was exaggerating, and making too much out of our struggles. Maybe there was something wrong with ME that I couldn’t handle the extra work required for my daughter?

    Thankfully our counsellor, who at this point had been visiting with my daughter and I for over a year, twice monthly for an hour at a time, also expressed her shock and surprise at how inaccurately Dr. McLecturepants had characterized our daily struggles.

    I was heartbroken. I drafted a letter—respectful, clear, and shared with our counsellor and friends for feedback. After all, I didn’t want to provoke another lecture. I didn’t want to make things worse, or insult our pediatrician’s professionalism, or god forbid, challenge him or hurt his ego.

    I brought in observations from myself, her grandparents, coaches, teachers—any adult in Ava’s life. I asked him to reconsider.

    He refused. Told his receptionist he wouldn’t change it. So I made an appointment. 

    Enough is Enough

    This time, the gloves were off, and I knew the advocate (me) needed an advocate.

    So I brought my mom—who never takes my side in these things; after all, I’m too outspoken, too sensitive, too…(you get the drift).

    But this time she came, because I needed backup. It meant so much to me that she did that, even though I could see she didn’t believe it was as bad as I said it was.

    When we tried to explain, he talked over us. 

    Not once, not twice. 

    Repeatedly. 

    McLecturepants wouldn’t acknowledge the fact that we might have a better understanding of the difficulties my daughter has every day. My mom—stoic, practical, no-nonsense—who never speaks up and hates confrontation, actually shouted: “You’re not listening to her!” after he cut me off yet again.

    That’s when I stood up and said: “We’re done. You’ve lectured me for years. Dismissed me. Put me in the middle of conflicts with other doctors. I believe you’ve treated me differently because I’m a woman, and I don’t feel safe bringing my daughter here anymore.”

    We left.

    One Final Violation 

    I picked up kiddo’s files a week later. On my way to our counsellor’s office, I noticed something strange. Mixed into Ava’s files were records for another child. Operations, procedures—stuff my daughter had never had. A huge privacy breach. I returned them immediately, because that’s what I’d want another parent to do if it were my child’s info. 

    But wow. 

    Just wow. 

    This from the office of a doctor who’d been lecturing me for years about MY incompetence as a mom?

    Blacklisted for Speaking Up

    We’ve been seeing our GP ever since. Lately, I’ve been researching other possible underlying conditions—things like hypermobility, POTS, immune dysfunction—and brought them up with our GP, who was amazing and agreed to help. He referred us to another pediatrician in our town.

    I didn’t realize this pediatrician was at the same office as Dr. McLecturepants. You can imagine the surprise when their office called to schedule the appointment. Still, I knew I would have a longer wait for a pediatrician from other, larger centers, so I agreed to the appointment.

    Why would I go back?

    If you’ve ever had a sick child, you’ll understand that all you care about is making their quality of life better.

    And then, today, after picking up my daughter from school, a call came in from our GP’s office, which I took over our hands free, thinking it was about my upcoming blood tests. 

    We’d been rejected. Well, technically the word they used is, he has “declined.”

    The new doctor wouldn’t take us as patients because of my “issue” with the previous pediatrician. And my daughter heard every word of that rejection.

    The message was clear: they stick together.

    This is what it’s like to advocate for a neurodivergent child in the medical system as a single mom.

    No one’s listening.

    Backing it Up: What the Research Says

    Sexism in the Medical Profession:

    • A 2022 study published on “Women’s Experiences of Health-Related Communicative Disenfranchisement,” found that women are more likely to report feeling dismissed, not believed, or condescended to by medical professionals.
    • Female patients, especially mothers, often get labeled as “anxious” or “overreacting” when advocating for their children, leading to delayed diagnoses and interventions.

    Bias Against Single Mothers:

    • Single mothers are statistically more likely to be perceived as less competent parents by both professionals and the public.
    • These biases can lead to increased scrutiny, less support, and more judgment in medical and educational settings.

    Challenges of Advocating for Autistic Children:

    • Parents often report having to fight for recognition of their child’s needs, with many diagnoses being delayed due to outdated stereotypes like “they make eye contact.”
    • Autistic girls and children with Level 1 Autism (formerly known as Asperger’s) are often underdiagnosed due to masking and lack of understanding by professionals. 

    Privacy and Confidentiality in Canada (PHIPA):

    • The Personal Health Information Protection Act (PHIPA) mandates that healthcare providers protect the confidentiality of all patient information.
    • Sharing or misfiling another child’s medical information, even accidentally, is a breach under this act and can be reported to the Information and Privacy Commissioner of Ontario.

    Medical Ethics & Gatekeeping:

    • Physicians are ethically bound to advocate for patient welfare and make decisions free from personal bias or inter-professional politics.
    • Refusing care to a child based on a parent’s disagreement with another doctor raises serious ethical concerns about bias, access to care, and professional conduct.

    Why Parents Shouldn’t Be Penalized for Speaking Up:

    • Advocacy is not aggression. Speaking up about misdiagnosis, misrepresentation, or mistreatment should never result in being blacklisted.
    • Punishing parents for advocating silences necessary voices and puts children’s care at risk.

    This is my story. It’s also the story of so many parents out there who’ve been dismissed, condescended to, or penalized for doing what they’re supposed to do: protect and advocate for their child.

    We shouldn’t have to shout to be heard. But sometimes we do. And when we do? We deserve to be listened to.

    April is World Autism month. Do your part. Speak up. Advocate. Scream. Pound your fists. Or better yet, write a blog and call the assholes out.

  • Understanding ARFID: A Guide for Parents

    Understanding ARFID: A Guide for Parents

    Ever tried convincing a cat to take a bath? That’s what mealtime felt like with my daughter. For years, I chalked up her eating habits to typical picky eating. There was the year she would only eat Microwave Kraft Dinner, not regular Kraft Dinner—and it had to be the “Three Cheese” variety, not the regular one, followed by the year of hotdogs, cheese strings and chicken nuggets. 

    You get the idea. Little did I know, we were grappling with Avoidant/Restrictive Food Intake Disorder (ARFID), a condition that turned our dining table into a battlefield.

    What is ARFID? Understanding the Disorder Beyond Picky Eating

    So, what’s ARFID? Imagine a world where food isn’t just unappealing—it’s downright terrifying. Unlike your average picky eater who might turn their nose up at broccoli, individuals with ARFID experience intense anxiety around certain foods, leading to a severely limited diet. It’s not about being difficult; it’s about genuine fear and discomfort. 

    For my daughter, the “feel” or texture of specific foods, their smells, spiciness, or even temperatures can cause feelings of revulsion, which often leads to gagging, throwing up, and tears.

    Debunking Myths: ARFID vs. Picky Eating – What’s the Difference?

    Let’s set the record straight: picky eating is a phase; ARFID is a disorder. Picky eaters might refuse spinach today and devour it tomorrow, or they will give in with time and persistence. Those with ARFID have a consistent aversion that can lead to nutritional deficiencies and social challenges. 

    It’s not a choice or a quirk—it’s a serious issue that needs understanding. And for the love of the goddess, don’t blame the parents and suggest they should force-feed their children. It might work in the short term, but you’ll only be adding to their trauma and anxiety and creating more problems in the long run. Oh, and they’ll likely never trust you again…so there’s that.

    From Kitchen Nightmares to Lightbulb Moments: Recognizing ARFID in Children

    Picture this: I subscribed to a fancy cooking kit, thinking exotic recipes mailed to our doorstep each month would entice her. Spoiler alert—she loved cooking but wouldn’t touch the food. After countless failed attempts and a mountain of uneaten meals, the lightbulb finally went off: This wasn’t just picky eating; it was something more. Here are some signs your child might have ARFID:

    • Menu Monotony: If your kid’s diet makes a monk’s look adventurous, sticking to the same few foods day in and day out, it might be ARFID.
    • Nutritional Nosedive: Noticing your child looking more like a wilted lettuce than a vibrant veggie? Fatigue, dizziness, or stunted growth could be red flags.
    • Weight Woes: If the scale’s stuck or moving backward despite your best efforts, and your child isn’t growing as expected, it’s worth a closer look.
    • Sensory Snubs: Does your child treat certain textures, tastes, or smells like they’re toxic waste? This extreme aversion isn’t just being fussy.
    • Fear Factor: Is your child convinced that eating will lead to choking, vomiting, or other disasters, even without past trauma? That’s more than just nerves.
    • Mealtime Meh: If getting your child to eat feels like pulling teeth, and they show zero interest in food, it’s a sign something’s up.
    • Social Sidestep: Avoiding birthday parties or family dinners because of food? When eating habits start dictating social life, it’s time to pay attention.

    The Emotional Rollercoaster: Coping with ARFID and Autism in the Family

    Navigating ARFID alongside autism? It’s like juggling flaming swords while riding a unicycle. The constant worry about her health, coupled with unsolicited advice from well-meaning (but clueless) folks, was overwhelming. But understanding that her eating habits weren’t a choice allowed me to approach mealtimes with empathy and a dash of humour. Here’s a list of more challenges faced when your kiddo has ARFID:

    1. Lunchbox Dilemmas: Managing ARFID in School Settings

    Packing lunch became a daily game of “Will She Eat It?” Spoiler: she usually wouldn’t. The fear of her going hungry or facing judgment from peers was ever-present. Collaborating with school staff to ensure she had access to safe foods was essential, even if it meant becoming “THAT” parent. 

    And the constant reminders to sign up and pay for pizza day? Why spend money when it’s not the specific type of pizza she’ll eat? That’s one good thing about ARFID: you’ll spend less on hot lunches at school.

    2. Sleepover Survival Guide: Preparing for ARFID Away from Home

    Sleepovers should be fun, right? Not when you’re packing a cooler full of “safe” foods and giving other parents the ARFID 101 crash course. Explaining her eating habits often led to raised eyebrows and awkward silences. But hey, at least she didn’t starve. And she got some much-needed social interaction, although THAT didn’t always go as planned. But that’s a topic for another blog.

    3. Growth Charts and Grocery Lists: The Health Impact of ARFID

    Her limited diet had me on a first-name basis with her pediatrician. And that wasn’t necessarily a good thing since I didn’t really like the man, and he most certainly didn’t like me. That’s another thing you’ll find as you balance the many nuances of autism parenting and co-existing conditions like ARFID. Often, you’ll know more about your kiddo and their struggles than the “supposed” experts. 

    This can be infuriating. 

    Luckily, I had specialists to fall back on, and their support and validation gave me the strength I needed to fire him. Trust me, that was the right decision, and our GP stepped in and is doing a fantastic job—all without the constant old-school and somewhat sexist judgment from his predecessor.

    Monitoring your child’s growth and ensuring she got the necessary nutrients when dealing with ARFID felt like a full-time job. When your kiddo only eats a specific brand of her “approved” foods, shopping trips often become scavenger hunts, requiring trips to three or four different stores to make sure you can find everything she’ll eat.

    Regular check-ups and consultations became our norm, highlighting the importance of the right kind of professional guidance in managing ARFID.

    Trial and Error: Our Attempts at ARFID Management

    I tried it all: tough love, sensory play, and bribery (don’t judge). Some methods brought small victories; others were epic fails. The journey was a rollercoaster of hope and frustration, teaching me that progress isn’t linear and that sometimes, you just have to laugh to keep from crying. Here are some strategies recommended by experts that worked (and didn’t) for us.

    • Baby Steps with New Foods: Introduce new foods at a snail’s pace. Start with a microscopic nibble and gradually work up to a full bite. Rome wasn’t built in a day, and neither is a diverse palate.
    • Sensory Shenanigans: Turn mealtime into a sensory playground. Let your child squish, sniff, and even play with food. Engaging their senses can make unfamiliar foods less intimidating.
    • Routine Rules: Establish a mealtime routine that’s as predictable as your morning coffee (or hot chocolate for my fellow coffee haters). Consistency can create a safe space for your child to explore new foods without the element of surprise.
    • Positive Vibes Only: Celebrate every tiny victory like they’ve won an Olympic medal. Positive reinforcement can encourage more adventurous eating. Just remember, no pressure—nobody likes a food drill sergeant.
    • Therapy Tag-Team: Consider enlisting the help of a professional, like a feeding therapist or psychologist. Sometimes, it takes a village—or at least a trained expert—to navigate the ARFID maze.

    We’ve tried everything mentioned above, some with more success than others. For us, a mealtime routine and a specific place to eat worked wonders. Incorporating her preferred foods into balanced meals or forcing her to try new foods? Not so much. This resulted in spending money I didn’t have on food that got wasted.

    Throughout the process, I learned that patience, positive reinforcement, and a well-timed joke worked wonders. And when all else failed, McDonald’s was a reliable backup.

    Walk a Mile in Our Shoes: Seeking Empathy for Families Facing ARFID

    Living with ARFID is like navigating a minefield blindfolded. Judgment and unsolicited advice only add to the challenge. A little empathy goes a long way. Before you suggest “just making her eat,” try understanding the complexities we face daily.

    Support isn’t about offering solutions; it’s about listening without judgment. Educate yourself about ARFID, offer a helping hand, or simply be there. Creating an inclusive environment where individuals feel understood and accepted is invaluable. Trust me, after years of raising a kiddo on the spectrum, this kind of acceptance is still hard to find, yet it is so appreciated.

    Reflecting on Our ARFID Journey: Lessons Learned and the Road Ahead

    Our journey with ARFID has been a mix of tears, laughter, and a lot of McDonald’s takeout. (I can feel you judging me—stop it)! Understanding the disorder empowered me to advocate for my daughter and seek appropriate support. It’s a continuous learning process, but one filled with hope and resilience.

    Sharing our story is a step toward building a community of support and understanding. I invite others to share their experiences, ask questions, and foster a compassionate dialogue around ARFID and its impact on families. Let’s navigate this journey together, one bite at a time.