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Sourcing Support for Your Child on the Spectrum During Personal Medical Crisis

Breast Cancer Ribbons
Breast Cancer Awareness

Saying that the past five years have been eventful would be an understatement. In November of 2021, my son was diagnosed with autism spectrum disorder along with a myriad of other similar disabilities. Approximately a month later, I was diagnosed with Stage 3 breast cancer, just three short months after our second son was born. Naturally, having two back-to-back life-changing events occur, my husband and I had little time to process them, so the grieving process was longwinded.

I spent the majority of 2022 going through more diagnostics, chemotherapy, radiation, and surgery while simultaneously sourcing ABA therapy along with speech, physical, occupational, and feeding therapies for my son. Admittedly, I did not know much about the disorder. Thus, I set out to educate myself, reading countless articles, visiting multiple websites, talking with insurance and other parents, investigating various providers, and assessing products that could benefit my child. Through these activities, not only was I better able to navigate the world as a new parent of a child on the spectrum alongside my husband, but I also distracted myself from my medical journey.

Later that year, we lost another family member to cancer, and this particular loss hit hard as she was the cornerstone of my boys' lives. To this day, the loss continues to impact us, but we do our best to keep her memory alive. Jumping to 2024, I was experiencing painful headaches regularly. I visited my PCP, who thought the headaches could be attributed to sinusitis and prescribed me antibiotics. A week later, the headaches persisted, and back to the PCP I went, who then ordered me bloodwork and a CT scan. Upon receiving the CT scan results, my worst nightmare had come true. I had developed a metastatic brain cancer.

I immediately phoned my oncologist to relay the news and develop a treatment plan. In short, I underwent additional testing, including a PET scan and MRI that later confirmed my suspicious CT scan. I had two tumors, one sizing at 3.1 cm in my cerebellum and the other measuring at 1.6 cm in the left hemisphere of my brain. I would need brain surgery to remove the bigger tumor, followed by radiation to treat the surgical site and the smaller tumor.

Due to the amount of swelling in my brain, my oncologist recommended that we be admitted to their ER as there was a risk of seizure. Everything happened quickly. However, my husband and I had to make provisions for our children. Moreover, my son, who is on the spectrum, had a pretty intense therapy schedule, and we did not want him to miss any of his sessions as he had been making tremendous progress as of late.

Fortunately, we have an incredible familial support system, friends, and a compassionate community willing to step in at any moment. We recruited the help of several family members to stay at our home to care for the children and bring our son to therapy. My local Mom's Club president was also a terrific resource as she had created a Meal Train for me and my family. This act positioned us for success as many local families volunteered to make our meals once we were home from surgery and donated so that we could also order out. I was in the hospital for six days, and we can not thank our support system enough. Planning care for a neurotypical child is difficult enough, but adding a child on the spectrum presents its own unique set of challenges.

Thus, if you ever face a crisis, lean on those closest to you. You may be pleasantly surprised at how your community can come together to support you in times of difficulty. Contact your child's school or daycare and communicate your circumstances. You may also contact your local priest, pastor, or church. Not only will you get prayers, but you may also find it a promising avenue for support. Lastly, as challenging as it may be, being public and transparent about what you are going through is a great way to invite support. No one likes to see their friend, family member, neighbor, or community member go through a medical crisis, especially when young children are involved. So do yourself a favor and leverage social media because support is at your fingertips.

Brain Cancer Ribbon
Brain Cancer Awareness


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