by Justin Rosario My feelings about autism are not at all complicated. They are so uncomplicated that they can be well and truly encapsulated in two words: “Fuck Autism.” There’s not a ton of grey area to explore. I love my son Jordan but autism has taken away everything he was supposed to be so autism can go fuck itself forever. If the word “ableist” is bubbling through your mind right now, this article is not for you. Move on and police someone else’s feelings.
You could have been describing my life, and my son’s life, except he is now 38 years old and living in a group home. I’d love to tell you it will get easier, but that would be a lie. Just live your life, one day at a time, and soak in all the love he feels for you even if he can’t express it.
We are in complete agreement . . . . FUCK AUTISM!!
Your fierce paternal love always gets me. You have my deepest respect! Reading your article I just realized again how blessed I am to have a bit of empty nest syndrome with kids in their twenties because it means they find their way around in the world without me.
I raised a kid on the Spectrum. Because he is smart, no one diagnosed Autism until he was 28. So he fell through all the cracks. We'd go a few days before another limitation would become apparent. Each appearance of a new or worsened limitation would be a death, with mourning. Every time I thought maybe he's growing out of it, another death with mourning. He's been able to accomplish a lot, while suffering high anxiety and diminished executive function, and he seems happy sometimes, yet we always wait for another shoe to drop. He's an adult now, and we still pay for meds, psychiatry, psychology, etc. None of which are cheap. But we now live on a small pension, and we're worried that we are becoming unable to meet our health copays, or live in our house. We keep waiting for the next shoe, and try not to flinch when the phone rings.
Do you feel that the schools (over the years) did enough and/or effectively cultivate recognized & meaningful speech instruction with your child?Even with the use of assistive technology? And did they help to coordinate for more resources in the community?
Tough read, but thank you for sharing a glimpse into the challenges you and Deb face with Jordan.
For reasons, I always find your articles about the challenges you and your wife face raising and caring for Jordan helpful and hopeful.
Thank you for sharing.
You could have been describing my life, and my son’s life, except he is now 38 years old and living in a group home. I’d love to tell you it will get easier, but that would be a lie. Just live your life, one day at a time, and soak in all the love he feels for you even if he can’t express it.
We are in complete agreement . . . . FUCK AUTISM!!
Your fierce paternal love always gets me. You have my deepest respect! Reading your article I just realized again how blessed I am to have a bit of empty nest syndrome with kids in their twenties because it means they find their way around in the world without me.
You have my eternal respect, Justin. You are a wonderful father and your wife a terrific mother.
I raised a kid on the Spectrum. Because he is smart, no one diagnosed Autism until he was 28. So he fell through all the cracks. We'd go a few days before another limitation would become apparent. Each appearance of a new or worsened limitation would be a death, with mourning. Every time I thought maybe he's growing out of it, another death with mourning. He's been able to accomplish a lot, while suffering high anxiety and diminished executive function, and he seems happy sometimes, yet we always wait for another shoe to drop. He's an adult now, and we still pay for meds, psychiatry, psychology, etc. None of which are cheap. But we now live on a small pension, and we're worried that we are becoming unable to meet our health copays, or live in our house. We keep waiting for the next shoe, and try not to flinch when the phone rings.
Do you feel that the schools (over the years) did enough and/or effectively cultivate recognized & meaningful speech instruction with your child?Even with the use of assistive technology? And did they help to coordinate for more resources in the community?