Autism; Aging Out in a Covid Pandemic – Part I

"Aging Out" - A Mom Releases Fear Built Over a Lifetime. 

For years I have lived with fear. Fear that feels like a quiet hum; always buzzing on the fringe of my consciousness. Fear, I think every parent who has relied on educational and therapeutic support for their child's care can relate to. 

It is fear of what those of us in the developmental disabilities community calls “Aging Out”, and it’s our collective Boogie Man!

For most of our children there will be no ongoing education, no higher-level learning, no exciting jobs, careers, dating, independent travels, marriage or children. Like other kids they graduate from high-school with lots of congratulations and accolades for a job well done, but the words fall flat when they are sent home to nothing or lack luster day programs. 

Since his diagnosis, I imagined by the time he graduated from high school there would be a variety of viable educational, work and life programs for this growing population. That has not been the case. The pickings are slim and although many programs sound good and the brochures look great, underneath, today's programs are not much different than the day programs of the past.  That is why I see images of my son – who deserves to continue to grow and learn like everyone else – overweight, being driven around town in a white van, eating donuts and junk food walking with a colorful rope tied around his waist. The rope connects him to another person with developmental disabilities, who connects to another and this continues until the group forms a long line connecting them as they all walk shopping malls and assorted destinations with no real purpose. The thought of that being his life once he “aged out” is what I have been afraid of since he was diagnosed with autism 20 years ago.

But few things happen exactly as we imagine, including “Aging Out”. Thanks to Covid 19 Nick effectively aged out sooner than planned.  But it wasn’t just our household facing this drastic shift, the entire world was sent home, not just Nick.   And instead of going from graduation to no supports, last March we were thrown into a different kind of chaos eliminating school, friends and supports over a 5-month period instead of overnight.  

Instead of his school experience and supports ending the summer school concluded, Nick went from school to home, to online school (not useful for Nick) to online graduation, to online summer school, to nothing. Amidst the chaos of Covid all families were stressed with change, everyone was home, and there was nowhere for him to go because everything was closed. So instead of “Aging Out” being the biggest concern in my world, it was just one of them.

 I was not alone is sudden change, which in a weird way seemed to soften the impact of the moment and what was to come. I was just like every parent in the country struggling to figure out what to do with children who were suddenly home all day!   I was like all the other parents struggling to be their kid’s teacher, coach and playmate while trying to work myself in a Covid-19 world.  I don’t mean to be a jerk, but there was something oddly comforting about knowing I was not alone, because in a way all of our kids had just “Aged Out”, even if only temporarily. Ironic that families around the world were experiencing the pain and panic I knew was coming, but they never expected.

I however, did have an advantage over most parents because this is not my first fear rodeo! This phase mirror’s the early stages when Nick was diagnosed with Autism. While other 2- and 3-year old’s were going to preschool, I was sent home, with my nonverbal 2-year-old kiddo in tow, to figure out our life on our own. Armed only with the knowledge that autism was a lifelong developmental disability with no known cause or cure that would require lifelong care. I remember feeling like I was staring into the abyss with no idea what to do, where to go, what would come next or how we would handle it.  It’s been a long journey from diagnosis to aging out. Yes, I am fatigued, but I am so grateful to have made it here. As I stare down the tunnel of what’s next, I am hoping the bright light, is a flashlight to guide me and it is not a train.

Parents of most neurotypical children anticipate a life after high school graduation for their children as a stepping stone into the future. A future, commencement speeches describe as filled with purpose, hope and optimism. That is not the reality of most families raising children with autism and other developmental disabilities. We don’t experience graduation as the start of a new chapter filled with exciting possibilities, purpose, college or work, dating, marriage and children. Instead the landscape for life after high school for our children looks like the end of their best times, a downhill slope offering little or no hope for the future.

Why? Because the world does not value investing in their ongoing education or building a future for our children.  I took Nick off the diploma track to delay this moment as long as I could. Leaving the diploma track meant he could stay in school until he turned 22. Staying in school provided an opportunity for him to continue to learn, while staying engaged in a safe regular routine with his friends for as long as possible. I took him off the diploma track while he was in middle school specifically to postpone the inevitable; the day school would end and with it  options for an engaging fulfilling life. 

Since his diagnosis, I imagined by the time he graduated from high school there would be a variety of viable educational, work and life programs for this growing population. That has not been the case. The pickings are slim and although many programs sound good and the brochures look great, underneath today's programs are not much different than the day programs of the past.  That is why I see images of my son – who deserves to continue to grow and learn like everyone else – overweight, being driven around town in a white van, eating donuts and junk food walking with a colorful rope tied around his waist. The rope connects him to another person with developmental disabilities, who connects to another and this continues until the group forms a long line connecting them as they all walk shopping malls and assorted destinations with no real purpose. The thought of that being his life once he “aged out” is what I have been afraid of since he was diagnosed with autism 20 years ago.

But few things happen exactly as we imagine, including “Aging Out”. Thanks to Covid 19 Nick effectively aged out sooner than planned.  But it wasn’t just our household facing this drastic shift, the entire world was sent home, not just Nick.   And instead of going from graduation to no supports, last March we were thrown into a different kind of chaos eliminating school, friends and supports over a 5-month period instead of overnight.  Instead of his school experience and supports ending the summer school concluded, Nick went from school to home, to online school (not useful for Nick) to online graduation, to online summer school, to nothing. Amidst the chaos of Covid all families were stressed with change, everyone was home, and there was nowhere for him to go because everything was closed. So instead of “Aging Out” being the biggest concern in my world, it was just one of them.

 I was not alone is sudden change, which in a weird way seemed to soften the impact of the moment and what was to come. I was just like every parent in the country struggling to figure out what to do with children who were suddenly home all day!   I was like all the other parents struggling to be their kid’s teacher, coach and playmate while trying to work myself in a Covid-19 world.  I don’t mean to be a jerk, but there was something oddly comforting about knowing I was not alone, because in a way all of our kids had just “Aged Out”, even if only temporarily. Ironic that families around the world were experiencing the pain and panic I knew was coming, but they never expected. 

I however, did have an advantage over those parents who had not been caring for their children 24/7, because this was not my first fear rodeo! I had experience providing all of his education at home, and I since my son didn't have friends, or playdates I was used to providing his social life. Who, know that would be an upside! But it was because this phase of our journey mirror’s the early stages when Nick was diagnosed with Autism. When I was sent home armed only with the knowledge that autism was a lifelong developmental disability with no known cause or cure, that would require lifelong care. While other 2- and 3-year old’s were going to preschool, I was home with my nonverbal 2-year-old kiddo trying to figure out life on our own and learning how to be everything to my child. 

I remember feeling like I was staring into the abyss with no idea what to do, where to go, what would come next or how we would handle it.  
It’s been a long journey from diagnosis to aging out. Sometimes moving unbelievably fast, and other times painfully slow.  But we made it. We are staring down the tunnel of what’s next. Praying and hoping the bright light at the end, is a flashlight to guide us and it is not a train.