Being a parent of a child with special needs is an all-consuming journey, and I find myself utterly drained. This isn’t just the typical fatigue that can be cured with a good night’s rest. This exhaustion is ongoing and comes from the constant need to advocate for my child, manage their care, and navigate a world filled with unsolicited judgments and advice. On top of that, I juggle work obligations, care for my other children, and handle all the normal responsibilities of life.
Caring for a child with multiple diagnoses means there are no breaks or time off. The demands require constant attention, adaptability, energy, commitment, and a well of patience. As my child grows and their needs change, I must also adapt. Each night as I crawl into bed, I feel immense gratitude for being my child’s mom, yet I am also acutely aware of my overwhelming fatigue.
I speak openly about my tiredness, not to elicit sympathy but because hiding it is a burden in itself. There’s a certain relief in sharing my truth, but it comes with its own challenges. Even among those I trust, some responses can be disheartening. I can’t tell you how many times someone has casually suggested I just need to prioritize self-care. As if a spa day or a shopping spree could somehow alleviate the relentless demands of my situation.
Then there are the comments about taking a vacation. Sure, those sound nice, but vacations come with a hefty price tag and require time I simply don’t have. Who would look after my child while I’m away? Certainly not the person who casually suggests I relax with a drink by the pool.
Finding reliable childcare for a child with special needs is another monumental task. We seek caregivers who understand our specific requirements, can follow our guidelines, and possess the creativity to adapt to our child’s unique needs. Often, we’re still figuring things out ourselves, making it nearly impossible to find someone who can step in seamlessly. Plus, this caregiver needs to manage multiple children at once.
My child requires much more supervision than peers their age. This is essential not just for ensuring positive interactions but also for safety. When a child struggles with impulse control and executive functioning, and is also hyperactive, the potential for danger looms large. I need someone who can anticipate my child’s actions before they occur. It’s no small ask.
Parents of children with special needs work tirelessly every day, not just for our kids but also to challenge stereotypes and combat judgment from others. We face questions like, “Why don’t you just discipline them more?” or “Have you tried alternative therapies?” Trust me, if simple solutions worked, we would jump at the chance. Defending our parenting choices only adds to our exhaustion. What we truly need is support—not criticism or unsolicited advice. If you can’t provide that, it’s best to step back.
I don’t feel the need to respond to every piece of unwarranted advice or ignorant commentary. However, those little jabs at my parenting skills accumulate and can feel overwhelming. I have days when I question my abilities. Am I doing enough? Is my child receiving the best care? I want to be an effective parent, not one who breaks down in the shower, overwhelmed by doubt.
I continually advocate for my child, whether it’s in school meetings or social settings. While other parents chat about extracurricular activities, I’m vigilantly monitoring my child, trying to strike the right balance between allowing them freedom and ensuring their safety.
The truth is, I’m always “on.” Even after my child is asleep, I find myself researching how to meet their evolving needs, learning about special education laws, and exploring new therapies. Like all parents, I desire the best for my child. Being their mom is a privilege, and I won’t give up without a fight. Yet, the constant challenges can be incredibly draining. What I truly need are more cheers of support and less judgment from those who don’t understand the complexities of this journey.
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Summary:
Being a parent to a child with special needs can be incredibly exhausting. The constant demands of care, advocacy, and navigating unsolicited advice from others can leave parents feeling overwhelmed. While seeking support is crucial, the journey often requires continuous adaptation to meet a child’s evolving needs. Ultimately, what parents truly need is understanding and encouragement from those around them.