For our family, our overarching concern and motto has been, “Henry cannot get sick.” His limited language impacts his ability to effectively communicate how sick he is and what he needs to feel better. He only says, “sick” so finding the source and reason for “sick” can often take time and multiple perspectives.
During this stressful, unsure time, we have lessened Henry’s risk of exposure by significantly reducing his access to anyone beyond his parents and one sibling. He does not go into stores, he does not come in contact with anyone; the scope and range of his life has become significantly small. This is the direct opposite of what we have worked for years to build.
Social distancing is tough for all of us – and especially for Henry. He is an accomplished artist and has a community of artist friends who admire his skills and ability. Now we have told him he cannot hug them, cannot shake their hands and cannot stand next to them. Our worries, however, run much deeper than that.
As a family unit we often rely on each other to help determine what Henry wants or needs - specifically due his limited communication. The current model of care in clinics and hospitals may not be able to support multiple family members to be with Henry, even with masks and gloves. “Henry cannot get sick” is fueled by increased concern that he may not be able to have family there to help interpret his needs.
There are times when Henry’s attempts to communicate fail, and this can lead to challenging behavior out of frustration. In this pandemic, we worry that individuals with autism who may be exhibiting challenging behaviors could be viewed as difficult patients, rather than sick patients in need of an adapted model of care to ensure effective treatment.
The most important thing we did to ensure Henry would have access to care is developing a solid relationship with his primary care provider. We engage in open, frequent discussions with his doctors. We use MyChart to stay in touch and communicate his needs and medication refills. We utilize telehealth visits to keep him well and keep us all informed.
Initially we were afraid – but we began to realize that Henry has more than just access to health care providers; he has a supportive medical team.
Families are equal voices in care and treatment for their children. Cultivating a relationship with your child’s provider is a priority – especially during times of uncertainty.
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