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.
I'm so sorry you're dealing with that. Money should never be a barrier for getting help for special needs children or adults but that's the world we live in. It keeps me up at night.
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?
That is an excellent question! It varied. His very first school when he was 2 didn't get very far but that wasn't their fault. He was completely non-verbal at the time. His -second- school made a little headway but it was difficult. His -third- school? Eh. He changed schools as he aged up and moved through NYC's Early Intervention program. They tried assistive tech but it wasn't his thing. He saw it as a toy. :(
When he entered elementary school down here in Virginia, though, he started to make decent progress and then ran into a wall for a year. The poor speech therapist felt terrible but riiiight before she retired at the end of the year, Jordan had a huge breakthrough and really started to talk. She was so thrilled! He's been doing well since then. He's probably never going to be able to have a full conversation but he can tell us what he needs clearly and that's really important.
Almost all of the speech therapists worked really hard and coordinated with his team and us so in this area, we can't complain. In NYC, we had access to a speech therapist outside of school as well so that helped a lot.
Thank you so much for your response, as well as, sharing some of your insight into your son’s experiences, including schooling and supports. I heard the pain in your words, describing the journey and your perspective of what’s to come for him and all of you as a family.
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.
As you know, autism parenting is very stressful and extremely isolating. I try to let others know they're not alone.
It’s the “and someday we won’t be there to care for them” that’s got to be the scariest part.
It absolutely is. It keeps me up at night. A lot of nights.
Yes.
It is appreciated.
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.
I'm so sorry you're dealing with that. Money should never be a barrier for getting help for special needs children or adults but that's the world we live in. It keeps me up at night.
Medicare for all (or something similar).
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?
That is an excellent question! It varied. His very first school when he was 2 didn't get very far but that wasn't their fault. He was completely non-verbal at the time. His -second- school made a little headway but it was difficult. His -third- school? Eh. He changed schools as he aged up and moved through NYC's Early Intervention program. They tried assistive tech but it wasn't his thing. He saw it as a toy. :(
When he entered elementary school down here in Virginia, though, he started to make decent progress and then ran into a wall for a year. The poor speech therapist felt terrible but riiiight before she retired at the end of the year, Jordan had a huge breakthrough and really started to talk. She was so thrilled! He's been doing well since then. He's probably never going to be able to have a full conversation but he can tell us what he needs clearly and that's really important.
Almost all of the speech therapists worked really hard and coordinated with his team and us so in this area, we can't complain. In NYC, we had access to a speech therapist outside of school as well so that helped a lot.
I hope that answered your question. :)
Thank you so much for your response, as well as, sharing some of your insight into your son’s experiences, including schooling and supports. I heard the pain in your words, describing the journey and your perspective of what’s to come for him and all of you as a family.