My daughter, Aleah, was a bit of a medical mystery. She didn’t quite fit into the criteria for any specific diagnosis, but we knew she was missing milestones. We started Early Intervention after expressing our concerns to her pediatrician, and we started getting so many referrals that it seemed hard to keep up with them all. Thankfully, her developmental pediatrician was thorough, and after she exhausted all of the testing within her scope, she sent us to genetics. The genetics team was not exactly sure what they would find, but highly recommended doing Whole Exome Sequencing (WES). Aleah’s insurance automatically denied this test and the following appeal; however, the genetics counselor was able to use a resource fund that the hospital had for families, like ours, that could not otherwise afford the needed testing when the genetics team felt confident that there would be a finding. I often reflect on how different our lives would be without this resource that made the testing possible and ultimately gave us a diagnosis. With Aleah’s diagnosis, we have not only been able to create a long-term care plan for her, but we’ve also been able to find our tribe.
Aleah’s genetic testing gave us her diagnosis of Rett Syndrome, and while we were grateful for the answers that provided, early on after the diagnosis, it felt like we were just kind of rolling through the motions. We found that what no one really wants to talk about openly is what it’s like for parents of newly diagnosed children to have waves of grief. We found ourselves balancing this grief alongside all of our appointments, our other children’s sports and activities, and with a sudden lack of financial resources to take care of it all. The feeling of seclusion was real, and it was intensified as I realized that I needed additional resources, but wasn’t sure where to look.
By the time of the test, our family of five had already adjusted from two-incomes down to one. I had resigned my job to become Aleah’s full-time caregiver because we had so many appointments and no daycare centers would accept her not walking. I remember shortly after we bought our house and Aleah was aging out of First Steps, I looked around at my girl growing up and realized that my end tables were turning into medical carts, the fancy dress shoes that I dreamt she would wear had turned to shoes that zipped around orthotics, and my love for sedan style cars became a desperate need for a fully accessible van.
We had been denied over and over for multiple pieces of equipment that Aleah needed, and I had to find a solution. I remembered the folder Riley had given me at the time of diagnosis, and I went through it and found Indiana Family to Family (formerly Family Voices Indiana at that time). I reached out to them, and that is when things really started to elevate for us. I learned how to be a better advocate for my child, how to fundraise, how to look for grants, what SSI was and how to apply, and also how to plan for an IEP. We had also previously been given information abut Indiana’s Medicaid Waiver programs and Children’s Special Health Care Services (CSHCS). All of these resources have not only been helpful to my family, but I’ve also been able to pass information along to other families as I share my story with them. Things felt like they were finally falling into place as I connected with other families like mine.
In addition to my ability to share my story with other families, I have also had other families share their stories and successes with me. We have had a lot of help from a charity organization out of Cincinnati where we are able to do a lot of equipment swapping with other families. Things like this are huge for families like mine because when we have to wait several months for new medical equipment, having a loaned item for a short time can really make those months of waiting easier.
It sometimes felt as if the hardest part of this whole process for me was accepting that I needed help and taking the step to ask for it. Once I figured out how to do that, I quickly learned that help was there. Help comes in many forms. Help may look like a listening ear, a resource for equipment, information on what some of the new terminology means, or even how to look for additional financial resources. I found each of these things- and more- within Indiana Family to Family.
Families of children with additional health and education needs are all swimming in the same sea of life, but we’re surfing different waves. Sometimes we may need an anchor or a float, and sometimes our neighbor may need to borrow ours. I hope that more parents come to know and believe that it is okay to ask for help, and I hope that we can all elevate each other along the way.