Raising a child with autism and another with a blood disease has changed how I see the world. It’s put me in categories I never imagined. It’s shown me, over and over, who the world caters to and who continually gets left behind.
Our lives revolve around costly medications, doctor visits, therapies, school meetings, and careful planning. Constant adjustments and preparations to make sure our children can thrive in a world that often feels stacked against them.
I’ve learned to see public policies and social norms with new eyes, aware that so many decisions directly impact my children’s ability to simply participate in society with dignity and safety.
For our child with autism, laws like the Individuals with Disabilities Education Act (IDEA) and the individualized education program (IEP) it provides aren’t just beneficial; they’re essential.
Without these protections, my child’s educational path would look vastly different, likely marked by misunderstanding and inadequate support rather than the meaningful growth every child deserves.
Government programs like Medicaid waivers and community-based support are also life-changing.
These programs don’t just provide opportunities and resources, they create a sense of belonging and dignity that my son might otherwise miss.
Similarly, my daughter’s blood disorder demands extensive medical attention, treatments, and costly medications.
Access to affordable healthcare and vital protections ensure that she can live without the constant fear that these lifelines could disappear.
When these essential supports are viewed as “extras” or as costs to be trimmed, it feels as though the world is dismissing my children’s basic right to live and thrive. I’m scared this is where we’re headed. I’m scared they’ll be forgotten.
Without these protections, our children would face even more obstacles in a world already designed without them in mind. I wish others could see that these resources don’t just help my children, they reflect our humanity and belief in equity.
I don’t know where we are heading and I hope I’m wrong. But I feel like so much of this is now threatened.
Removing these safeguards not only risks isolating and harming individuals but also fundamentally changes the positive direction I feel our society has been moving in.
I hope the policies and laws that protect the vulnerable will not only be preserved but strengthened. I hope there’s a lasting commitment to ensuring that every person, every child, has the chance to be included, valued, and safe, with access to the healthcare and education they need.
For families like mine, this isn’t just a matter of politics. It’s about survival, dignity, and the hope that each of our children has a rightful place in this world.
I love these two so much. They deserve health, happiness and too belong. My only wish as a mother is that our country, government and community see that they deserve those things, too.
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