I share my family’s journey with special needs on my blog, but let me clarify: I’m not a specialist. You might know someone whose child has a condition like Down syndrome or autism, but that doesn’t mean they truly grasp the complexities of raising a child who is tube-fed or relies on a wheelchair. It’s similar to expecting someone battling cancer to fully understand the challenges of living with schizophrenia, or assuming that a person born without legs can relate to the experiences of someone who is deaf. Yet, once you mention that your child has special needs, people often jump to the conclusion that you’re an expert in all things related to disabilities. That’s not how it works.
Most of us aren’t medical professionals, therapists, or educators, and even if we are, it’s often by chance. Personally, I never aspired to be a teacher or a nurse. My upbringing didn’t involve anyone with disabilities, and I certainly wasn’t prepared for the reality of having a special needs child. I grew up in a healthy family and never considered that I might face challenges like these. I was simply a mom welcoming another baby into the world, envisioning a peaceful future where we’d travel the globe once our kids were grown.
Clearly, life had other plans.
I was just a mom who had experienced the joy of raising overachieving babies who crawled, walked, and talked ahead of the curve. When my daughter, Hattie, began to show developmental delays, I naively chalked it up to her being a late bloomer, not realizing the gravity of the situation.
I was just a mom who had to learn about blood tests, geneticists, and various therapies. Suddenly, I found myself thrown into the realm of special needs, armed only with that infamous “Welcome to Holland” essay, which frankly, did nothing but frustrate me.
I spent countless nights searching the internet for information on my child’s challenges, making lists for doctors, caught between a fear of finding answers and the dread of not finding any. I was a mom unexpectedly navigating the world of special education, trying to learn the ropes in the heat of the moment, meeting incredible people who had chosen careers to support children like mine.
Amidst this, I still had three other kids who relied on me and faced their own struggles.
I am an expert on Hattie. I’m well-versed in our specific challenges. I know a fair amount about issues like constipation and seizures, and I could probably earn an honorary degree in speech therapy based on my experiences. However, I still don’t fully understand what it’s like to have a child with significant mobility challenges or severe autism. I recognize my limitations and still have no desire to pursue nursing.
What I do know is that having Hattie broadened my understanding of special needs. I’ve connected with other parents who share their own unique questions and challenges, all while managing the regular chaos of parenthood. These mothers and fathers deal with everyday life – from unloading the dishwasher to crafting Halloween costumes, and even navigating the ups and downs of preteen attitudes.
Some parents have confided in me, saying, “I can’t imagine what it’s like not to have a diagnosis.” Others, like me, are open to discussing everything from the struggles of finding stylish jeans to the joys of singing along to children’s songs.
At the end of the day, we’re still parents. We are experts in our own lives, but fundamentally, we are just moms and dads.
I may have extensive knowledge about Hattie, but I don’t claim to be an authority on all special needs. I’m simply a mom, and with a little listening and learning, you can become more informed too.
For more insights on this journey, check out this other blog post here. If you’re interested in at-home insemination, consider visiting Make a Mom for their reputable syringe kits. Additionally, UCSF’s Center is an excellent resource for pregnancy and home insemination.
In summary, being a mom to a child with special needs is not about expertise; it’s about love, learning, and navigating the complexities of parenthood together.
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