Creating Our Own Support System - By Anonymous

We have struggled finding education and care services for our girls with unique needs that aligns with our preferences for neurodivergent affirming care. It has been heart breaking to be questioned by professionals, told what they can offer is not what we want or that we have the “best” provider they can offer despite it not aligning with our values for care. Despite having the option to work more and pay privately if needed, the options are still minimal, and we are willing to compromise. While we certainly can appreciate that some services are in fact meeting some needs in the community, it leaves much to be desired.

I’ve been a part of a Birth to Five Illinois Family Council in the past. I have also made a career out of helping others navigate the systems. I support neurodivergent families at a mental health therapy practice, protecting them from suspicious diagnoses by navigating and advocating against a system unable/unwilling to adapt to meet their needs. In the past, I’ve advocated at IEP (Individual Education Plan) meetings, supported families with understanding their child’s needs, and taught parents about new ways to support their child.

There’s so much more I wish I could do and I’m always dreaming of what that could look like for our community. I’d love to work towards building a community for families where you are not only welcomed, but you are also fully accepted. Creating a place for rest, support, education, and friends... something so many of us caregivers to children with unique needs are desperately in need of.

Unfortunately, our circumstances and lack of trust in our systems are leading us to homeschooling in the future, which will greatly limit my ability to follow those dreams. For now, I try to find peace in doing all I can despite my limited reach. I’m hopeful this will be a dream I can continue to foster in the future.