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It was a simple question, asked at a party of people I hadn\u2019t seen in years. \u201cWhat grade is Justin in now?\u201d was the query, but the truth is I had to stop and think about it because they don\u2019t really do grades at his private autism school. \u201cHe\u2019s in ninth\u201d I replied, and we moved on to talking about our other kids and people we had in common. Soon a friend of my friend captured her attention, and I was left for a moment alone, with chicken on a stick, some good pinot grigiot, and my thoughts.<\/p>\n
Ninth grade. High school.<\/p>\n
My boy is in high school.<\/p>\n
One would think that realization would have occurred to me in August, not September after he\u2019d already been back in school several weeks, but honestly the end of August\/beginning of September is such a blur I\u2019d only been able to retain one kid\u2019s grade (5th, so proud of myself), and hadn\u2019t really given much thought to such a momentous leap on my eldest\u2019s part. As I savored my poultry and looked around the room the enormity of his age, his maturity (and mine) hit me.<\/p>\n
If he wasn\u2019t severely autistic, in three years he\u2019d be going to college like all the children of everyone else in this room who had their progeny at a decent age.<\/p>\n
I won\u2019t lie to you, this realization hit me like a ton of bricks. Since my other child is younger than Justin I haven\u2019t yet been a high school or college mom, so I\u2019ve only watched vicariously as my nieces and nephews and friends\u2019 kids have gone off to the big time. I\u2019ve hugged the parents of those children, reassured them that they are fully \u201ccooked\u201d and will do fine. I\u2019ve consoled them when empty nest syndrome ruled the day. I\u2019ve listened to their fears and concerns (will one ever sleep, will one party his tuition away), and have reinforced my feelings that their kids will be okay, they\u2019ve been given the tools to move on to their (more or less) independent lives.<\/p>\n
An independent life. That was the brass ring for me for Justin\u2019s hoped-for progress when he was diagnosed at seventeen months a decade-and-a-half ago, and it\u2019s been the hardest thing for me to relinquish in my dreams for him.<\/p>\n
Don\u2019t get me wrong. Sometimes I\u2019m sad that he\u2019ll never go to the prom, attend college, have a career, or get his license (okay, maybe not so much that one) too. I will probably mourn these things my entire life, not because I want to relive these events through him, but because I know they would have brought him pleasure. I have read articles over the years chastising parents for feeling this way, and to that I literally say \u201cphooey.\u201d These events are precursors to finding love, learning skills, and the holy grail, independence.<\/p>\n
It\u2019s okay to be sad sometimes.<\/p>\n
But the truth is my sadness is tempered by the fact he will never know what these things are, and won\u2019t miss what he doesn\u2019t know. My boy revels in routine, in having his mom greet him when he gets off the bus, in making him his expensive pretzels, and singing him the same three songs he\u2019s listened to since babyhood. He\u2019s happy, gloriously so.<\/p>\n
And trust me, having a severely autistic teenager in the house who\u2019s predominantly happy is the holy grail too.<\/p>\n
I\u2019ve learned to shelve my fears over his future both so I can function, and because I choose to enjoy my present life, which despite the challenges of raising an autistic child is pretty great. I don\u2019t want to miss a moment. He is joyous, and safe. He loves his life.<\/p>\n
And for that, I am eternally grateful.<\/p>\n
Being a caregiver to a disabled person is rewarding, and challenging, fulfilling and grueling all at once. My husband and I don\u2019t know if we\u2019ll be doing this full-time for twenty-five years or fifty. We struggle with determining what we think will be best with Justin, all the while knowing we may not have many different options for his lifetime care. I struggle also with figuring out what\u2019s best for me- I seesaw between a need to regain my own independence and keeping him with us until the last possible second. I\u2019m not sure what\u2019s best for us.<\/p>\n
More importantly, I\u2019m not sure what\u2019s best for him.<\/p>\n
I\u2019m hoping the decision becomes crystal clear for me down the road, revealing our best option like a good series finale that answers those questions you\u2019ve been carrying about for seven seasons. I don\u2019t yet know what I\u2019ll decide.<\/p>\n
But I do know this.<\/p>\n
My youngest, who is mildly autistic, has a great shot at college, a career, a wife, and a life away from his mom and dad. Will I miss him when he goes? Absolutely.<\/p>\n
Will I revel in the fact that he can leave? Absolutely too.<\/p>\n
Will I forever mourn and simultaneously just deal with the fact that Justin will always need help to make it through the day? Yup, that too.<\/p>\n
Our decisions are not clear cut. Our feelings don\u2019t have to be black and white.<\/p>\n
I\u2019m pretty sure for a good long time I\u2019ll be dwelling in shades of gray.<\/p>\n
For more on my family visit my blog at autismmommytherapist.wordpress.com<\/em><\/p>\n Follow me on Facebook at Autism Mommy-Therapist<\/em><\/p>\n