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  2020-03-28

  OpEd from an ASD Mom

  As the general population contemplates their loss of physical freedom and financial uncertainty there is an entire population of people being overlooked- the disabled. As a mother of a teenage son on the autism spectrum I am struggling to help him navigate a new world that I myself can barely comprehend. The basic routine and structure that all ASD children need to thrive has all but disappeared. In its place is only chaos and uncertainty, with parents desperately trying to hold things together. On a normal day my son attends a non-public special needs school with primarily ASD students. That school is now closed for an undetermined amount of time. That school does not just provide a special educator but desperately needed occupational therapy, speech-language therapy and behavioral support. My son also receives various outpatient services, many of which he has attended with the same physicians for most of his life. But, for the public safety, those have now closed- so they have been taken from him as well. As we try to maneuver to telehealth to supplement some of those supports the overwhelming truth of it all is clear- I will now be his teacher, OT, SLP and behavioral therapist. I am a fierce mother, but I am but one woman. How will I balance the need to work with his need for structure and medical care? How can I be at all places at once, doing jobs I am unqualified for? And while I am trying to juggle all professions at once, when will I ever just be mom again? My son is afraid. He is uncertain. But the reality is that there is no way for me to truly make him understand. My only solace is the strong community of ASD parents that have rallied to try to bring some sense of normalcy back to daily life. Our children miss their friends. Friendships are not easy to come by for this community, particularly among neuro-typical peers. So, the friendships formed among this group, within this non-public school, are crucial to their mental/emotional well-being. We all know it and we are all worried. Our children are prone to depression and self-harm. How can we keep them from isolating and regressing in a situation where isolation is required? One parent offers daily Zoom meetings. Every day at 3:00pm. If we can get all of the children to join we can only hope that it will fill the void, and help them feel like they are not alone. But we are all we have. The truth is we are all alone. The services we rely on are gone. The teachers are gone. Our routines are in shambles and the world is crashing down around us. We all understand the seriousness. We all understand the why. But as the world now turns to meet the needs of the pandemic the needs of our disabled children lay in the balance unseen and unheard.