I love your Substack, but do not leave comments. However, today is the exception. Your piece was courageous and certainly not fodder. Thank you for sharing.
I’m a pediatrician and often see dads struggle with the complexity of the emotions you so eloquently describe. I’ll direct them here in the future. Thank you for sharing.
“I love him, but I don’t know what to expect for him. One difficulty of this situation is that you’re not only coping with it but also grappling with the unknown. If we understood exactly what this was, we could perhaps more easily move beyond what is, admittedly, grief. We’ve suffered what feels like a loss, but aren’t sure of its magnitude. We’re told that, in due time, it might look like we’ve suffered nothing at all. We know what to hope for, but should we hope at all?”
This part put into words feelings I have had trouble expressing since my daughter, also the idyllic 7 month old, suddenly started having seizures. Seven years later and she is completely nonverbal and severely developmentally delayed, and will be so for life. The grief is unique, not like for a loved one who passed away, but a grief you carry around as you hoist her on to the changing table at 3AM after she has a bowel movement, knowing you will be doing this for the rest of your life. Grief knowing that as I take my final breath on this earth, my last thought will be will she be ok. Grief of transferring this burden to our typical son, as you also mentioned. Grief seeing her cousins and our friend’s kids grow and develop normally with all the activities and outings that she has no interest in, while a simple trip to the grocery store can end in a tantrum of banging her head on the floor and biting herself. It’s a living breathing grief that is ever present and never goes away completely.
One thing I have tried to do as it becomes more clear that she will never live a normal life is to let go of this grief, don’t apologize for her, face the challenge directly and know that there is dignity in raising her and giving her the best life possible. The joy that she gives us on her good days is special, and though I would give anything to snap my fingers and make her a typical kid, she is my daughter and I will spend every day of my life giving her everything she needs.
Hope you can find some peace as you face the unknown, Ethan. Time will give you the understanding and the wisdom you need to move through this with your son. Thanks for your words.
Thank you for sharing this Kevin. Similar to Ethan, I think you’ve really captured the essence in a well-written manner of how I feel with a profoundly autistic son with a second neurotypical child.
I have a 21 year old son who has not said a word in 17 years. He was never conversational but talked early on and then just stopped. He is on the very low end of the spectrum. 3 years ago we moved him into an assisted living facility and it was the worst experience of my life because I felt like I gave up on him. Worse I could not properly explain why we were doing that in the first place. Felt like I ambushed him but we had no other choice by then. It has gone fine. But I will tell you based on my own experience. Words are just one form of communication. You never know how important a smile can be when that is all you have to work with. He knows you're his dad, loves you unconditionally in a way that even your normal functioning kids will not. You will learn to accept that he is not going to be student body president or the varsity quarterback and that's ok. The goal is to do the things that will put a smile on his face. Meet him where he is. Take him to the park, take him swimming, and anything that will make him happy. It's very hard at times. Loneliness is a thing. Your friends, no matter how empathetic, will never understand what it is like. Challenges will stop and new ones will emerge but you will be a better person for having gone through it. Oh and Freddie has written extensively on the topic and can be a resource for you.
Ethan, this is beautiful. If this is not public, please consider making it so; it can bring comfort to a lot of people who don't have your gift for language and expression.
I'd like to type out some amazing comment, but it would surely pale in comparison to your piece. Thank you for the honesty and openness to share what is the best capture of parenting I have ever read. Nothing but the best wishes to you and your family.
It’s good to see your piece both because of the general quality of your writing but also because much commentary I see, for a whole host of reasons, I’m sure, come from mothers.
I’ve learned something from all these mothers for sure (especially author/academic Amy Lutz), but when I read or hear them versus when I am lost in my thoughts about my son, my thoughts somehow resemble the spirit of your essay more than anything I’ve come across.
All in all - thank you for sharing this piece of your life with us.
Thanks for sharing. “Then life stops going according to plan, as it does for us all, and you realize how little of what matters can actually be authored” The realest words ever written.
I respect having the courage to talk about the selfish feelings about what you wanted for your son and the reality it may not happen. And how you deal with that. All parents have dreams that they have for their kids and it’s difficult when concept of them may get shattered.
Writing that made me feel like a weight was pressing down on my chest. Prayers for the family and both your kids. No better parents for your son than you and your wife.
I love your Substack, but do not leave comments. However, today is the exception. Your piece was courageous and certainly not fodder. Thank you for sharing.
I’m a pediatrician and often see dads struggle with the complexity of the emotions you so eloquently describe. I’ll direct them here in the future. Thank you for sharing.
“I love him, but I don’t know what to expect for him. One difficulty of this situation is that you’re not only coping with it but also grappling with the unknown. If we understood exactly what this was, we could perhaps more easily move beyond what is, admittedly, grief. We’ve suffered what feels like a loss, but aren’t sure of its magnitude. We’re told that, in due time, it might look like we’ve suffered nothing at all. We know what to hope for, but should we hope at all?”
This part put into words feelings I have had trouble expressing since my daughter, also the idyllic 7 month old, suddenly started having seizures. Seven years later and she is completely nonverbal and severely developmentally delayed, and will be so for life. The grief is unique, not like for a loved one who passed away, but a grief you carry around as you hoist her on to the changing table at 3AM after she has a bowel movement, knowing you will be doing this for the rest of your life. Grief knowing that as I take my final breath on this earth, my last thought will be will she be ok. Grief of transferring this burden to our typical son, as you also mentioned. Grief seeing her cousins and our friend’s kids grow and develop normally with all the activities and outings that she has no interest in, while a simple trip to the grocery store can end in a tantrum of banging her head on the floor and biting herself. It’s a living breathing grief that is ever present and never goes away completely.
One thing I have tried to do as it becomes more clear that she will never live a normal life is to let go of this grief, don’t apologize for her, face the challenge directly and know that there is dignity in raising her and giving her the best life possible. The joy that she gives us on her good days is special, and though I would give anything to snap my fingers and make her a typical kid, she is my daughter and I will spend every day of my life giving her everything she needs.
Hope you can find some peace as you face the unknown, Ethan. Time will give you the understanding and the wisdom you need to move through this with your son. Thanks for your words.
Thank you for sharing this Kevin. Similar to Ethan, I think you’ve really captured the essence in a well-written manner of how I feel with a profoundly autistic son with a second neurotypical child.
I have a 21 year old son who has not said a word in 17 years. He was never conversational but talked early on and then just stopped. He is on the very low end of the spectrum. 3 years ago we moved him into an assisted living facility and it was the worst experience of my life because I felt like I gave up on him. Worse I could not properly explain why we were doing that in the first place. Felt like I ambushed him but we had no other choice by then. It has gone fine. But I will tell you based on my own experience. Words are just one form of communication. You never know how important a smile can be when that is all you have to work with. He knows you're his dad, loves you unconditionally in a way that even your normal functioning kids will not. You will learn to accept that he is not going to be student body president or the varsity quarterback and that's ok. The goal is to do the things that will put a smile on his face. Meet him where he is. Take him to the park, take him swimming, and anything that will make him happy. It's very hard at times. Loneliness is a thing. Your friends, no matter how empathetic, will never understand what it is like. Challenges will stop and new ones will emerge but you will be a better person for having gone through it. Oh and Freddie has written extensively on the topic and can be a resource for you.
Thank you for sharing. Wonderful piece.
This was excellent. Some of your best writing -- and that's saying a lot
Ethan, this is beautiful. If this is not public, please consider making it so; it can bring comfort to a lot of people who don't have your gift for language and expression.
Truly generous of you to give us this piece. The loneliness I often feel completely evaporated while reading
We all thank you for sharing, Ethan. 🤎
❤️
I'd like to type out some amazing comment, but it would surely pale in comparison to your piece. Thank you for the honesty and openness to share what is the best capture of parenting I have ever read. Nothing but the best wishes to you and your family.
I’ve gone through (much of) the same.
It’s good to see your piece both because of the general quality of your writing but also because much commentary I see, for a whole host of reasons, I’m sure, come from mothers.
I’ve learned something from all these mothers for sure (especially author/academic Amy Lutz), but when I read or hear them versus when I am lost in my thoughts about my son, my thoughts somehow resemble the spirit of your essay more than anything I’ve come across.
All in all - thank you for sharing this piece of your life with us.
Been reading since the early True Hoop days before the Warriors first championship. Never stopped reading. Thanks for sharing, beautiful piece.
Thanks for sharing. “Then life stops going according to plan, as it does for us all, and you realize how little of what matters can actually be authored” The realest words ever written.
I respect having the courage to talk about the selfish feelings about what you wanted for your son and the reality it may not happen. And how you deal with that. All parents have dreams that they have for their kids and it’s difficult when concept of them may get shattered.
Writing that made me feel like a weight was pressing down on my chest. Prayers for the family and both your kids. No better parents for your son than you and your wife.