What I Wish Others Knew as a Parent of Multiple Children with Unique Needs

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As the years go by, my list of challenges keeps expanding — I deal with asthma, dysautonomia, and chronic fatigue, among other health issues. Once I became a parent, the list grew even longer: I have a child on the autism spectrum, another with food allergies, and yet another facing speech apraxia. With all of this, the question “How are you?” becomes a loaded one.

So how am I? Well, it’s 9 p.m., the kids are finally asleep, and I’m eyeing the cookie dough in the fridge… so I’d say I’m doing pretty well in this moment! Is that misleading? I don’t think so. But I do wonder about those who care about us.

For parents like me, who can’t just pick one struggle from a list, life can feel overwhelming. If I share only the positive aspects, I’m often accused of being insincere. If I focus on the challenges, I risk being labeled as negative or receiving unsolicited advice. What do we do when there’s just too much to share?

We find our community. One of the most significant challenges of living with chronic conditions is the loneliness that often accompanies it. I’m not just a parent to children with special needs; I’m juggling my own health issues while managing therapies for three little ones. I don’t need someone to mirror my exact situation; I need someone who is not daunted by the complexity of my life. I crave a connection with people who understand the full spectrum of struggles without needing constant explanations.

We cannot simply “pick a struggle,” and if you can’t handle the whole picture, then it’s best to step aside — this is deeply personal. My family’s story is not solely defined by our hardships or our triumphs; we are so much more.

While our struggles don’t define us, they are part of our daily interactions. Here are a few things I’d like you to know:

1. When I say I’m tired, it encompasses a myriad of factors. Please ask questions rather than make assumptions.
2. My children have diagnoses that help us seek necessary support; these labels do not dictate who they are or excuse any misbehavior. They provide us with the insight needed to support them.
3. Even when well-intentioned, questioning our diagnoses is inappropriate. We conduct research and multiple consultations to navigate our path. If you’re curious, just ask — there’s a lot happening that you might not see.
4. Some periods in our lives are more challenging than others. Between autoimmune issues and everyday family drama, everything can suddenly feel overwhelming. Please be patient with us.
5. We may show resilience, but please don’t idolize us. If given the choice, we wouldn’t choose this journey. Phrases like “you’re so strong, I couldn’t do that” can feel dismissive. We take life moment by moment, holding onto a messy, realistic form of hope.

If you’re still with me, can you appreciate the complexity? We don’t need to choose one struggle over another; life is a buffet of challenges and joys.

For more insights, check out this informative resource on home insemination here or explore the options available at BabyMaker for those considering their family-building journey.

In summary, being the parent of children with special needs is both a challenge and a privilege. It involves navigating a complex landscape of emotions, therapies, and daily life, all while seeking understanding and connection with others.