6 tips to advocate for your child’s special needs even in a time of crisis

Stephanie Duesing

Any parent of a child with disabilities that are not readily apparent knows how it feels to come up against brick walls when searching for help. Now, factor in the global crisis we all face in battling COVID-19, a time when services considered nonessential are being curtailed. If you feel scared and forgotten, you are not alone. 

In January 2017, I discovered my 15-year-old son Sebastianan honor student, painter, sculptor, potter and water polo-playerwas almost completely blind. When going through old photos, we realized he couldn’t recognize himself or anyone else in any of the pictures. Sebastian had taught himself to count his steps and turns as a toddler, and had been navigating our own home as a blind person would, all his life. He had also taught himself early on to process his vision verbally, using words to help him “see.” Nobody knew he was blind. Not even him.

An epic struggle to get a medical diagnosis ensued. We heard the same answer over and over again: “I can’t help you.” 

It took almost six months to learn that Sebastian is one of tens of thousands of people in the U.S. who has cerebral/cortical visual impairment (CVI), and to get him the basic services he needs. The stakes are even higher now, up against quarantines, uncertainty, and the collective trauma caused by a global pandemic. 

But parents, don’t lose heart. You can still advocate for your child even during these scary times. Here are six things you can do when it feels like medical professionals aren’t listening: 

Trust your gut 

You know your child better than anyone else in the world. If you see a symptom or behavior that worries you, listen to your instincts. Sebastian’s symptoms were very subtle when he was little, but once we figured it out, I knew without a doubt what his condition was. That certainty gave me the confidence to keep going.

Listen to your child

Listening doesn’t just mean hearing what they tell you with words. It means paying attention to what they may not be able to say. Crying is communication. So are fear, anxiety, anger and pain If your child is verbal, talk to them about what distresses them. If they’re too young for conversations, or nonverbal, closely examine those behavior patterns.

Be persistent

Doctors are only human. They only know what they’ve been trained to know. As we are discovering with COVID-19, new infections and medical conditions are discovered regularly, and many older ailments are still poorly understood. If one medical provider fails to  answer your questions or provide your child with the necessary care, find another. 

Document everything!

I have 36 single-spaced typed pages of documentation of what we went through to get a diagnosis for my son’s vision impairment. I wrote down everything, from notes I’d taken at each  medical appointment to discoveries we made about Sebastian’s visual processing along the way.Your persistence can mean the difference between getting help for your child or not.

Think beyond the medical community

Different professions vary in how quickly they educate their members on new medical and scientific information. Educators, occupational therapists, science researchers, speech pathologists, or any other related field may sometimes be a parent’s best resource. In our case, help came thanks to The Seeing Eye guide dog organization, who connected us to the best vision and brain experts in the world. 

Be ready for a marathon

It took us 15 months to complete our medical journey. We saw approximately 20 different doctors and waded through research studies to finally receive a conclusive medical diagnosis of CVI from Dr. Barry Kran at the end of March 2018. The head of optometrics from the New England Eye Low Vision Clinic, Dr. Kran is a leader in the field and continues to be an incredible support for our family.

Remember, you are your child’s best advocate. If you are having trouble finding medical or educational assistance, trust yourself, don’t give up, and be ready to go long. Parents of children who have disabilities are a brave, persistent and knowledgeable lot! Finding professionals who understand this fact and are willing to listen is half the battle. 

Stephanie Duesing is devoted to raising awareness of Cerebral/Cortical-Visual Impairment (CVI) and advocating for patients with this prevalent but largely unacknowledged cause of visual impairment. A music educator, Stephanie has taught elementary and middle school music and chorus, as well as private voice and piano. She also opened her own Musikgarten studio, where she taught classes for families with babies, toddlers and preschoolers.