I love this line, Amy Julia: "For nearly two decades, I’ve also been telling the story of our family in public, not in order to hold us up as exemplars, but in order to help shape an imagination for a good life for families affected by disability."
Thank you! It's such a fine line to walk, especially since I don't share a lot of the harder stuff. But I also know how much I needed an imagination for the future when Penny was little, and how much even glimpses of older kids and adults with Down syndrome helped, so hopefully we are doing our little part towards offering a similar vision.
I'm struggling to know how to respond to this, or even if I should, as the sibling of a disabled person whose parents did get divorced. I don't want to sound a note of doom! I do appreciate this encouraging message and I do know lots of parents of disabled children who have healthy, thriving marriages. I will just say, about the siblings--the major difficulty for siblings is exactly what you've unintentionally described here: the subtle, unintended pressure to be the ones without any problems. I'm definitely not saying you are pressuring your abled children in this way. I think it can often come from inside the child themselves, as they desperately want to provide whatever the family needs from them. I certainly wouldn't have been able to articulate that as a teenager. It has taken me several decades to begin to unpack this.
Sarah--I'm so glad you did choose to respond here. One of my concerns in writing this essay is that so many families do experience strain and hardship related to having a disabled child and divorce is sometimes the outcome. I have friends with kids with disabilities who have divorced, and others who haven't. So I don't take your statement of the reality of your family situation as any sort of doomsday warning, just of truth.
And thank you for your note of caution about siblings. I think we will all be working out our issues for many years to come, and I just hope we are giving our kids permission to feel and eventually to explore what was going on with them.
On another note, I'm hoping that you and Janet (also on this comment thread) might be able to meet each other as adults living with siblings with disabilities...
My brothers, their wives, and I are planning our parents' 60th Wedding Anniversary Celebration for next month. I was born with slight cerebral palsy and a significant speech impairment. I had hundreds of hours of therapy. I earned a Master's degree. While I attended college, my grandma with early-stage dementia lived in our home. My three younger, non-disabled brothers are compassionate men!
It's so hard to know what the factors are that go into any marriage that thrives or doesn't, but I love hearing stories of other families affected by disability where things have gone well! Thank you so much for this beautiful picture of intergenerational faithfulness and love!
I, too, kept hearing about the high rates of divorce among parents with children with disabilities. I, too, did my research because the numbers thrown around didn't match my observations.
In our case, our son has humbled us and brought us closer.
I will share this article with my email list.
I hope Penny gets in the program of her dreams when the time comes. It's so great to see that such programs have become more numerous since we looked at postsecondary programs for our son. The program of his dreams was Riverview School. When he got in, we were more excited than parents whose kids get into every single Ivy League!
I have 3 children. They are now adults. The younger two are twins and one of the is mentally disabled. I have written about her in many of my stories and had a book ( The Shape of Normal) published . I appreciate what you wrote! IIt took me a long time to completely accept it. A journey of acceptance.
Yes--family life is complex. There's a lot for me to accept about myself as a mom and about each of our kids. I feel like that happens over and over again, which leads me back to your words that it is a journey!
I love this line, Amy Julia: "For nearly two decades, I’ve also been telling the story of our family in public, not in order to hold us up as exemplars, but in order to help shape an imagination for a good life for families affected by disability."
Thank you! It's such a fine line to walk, especially since I don't share a lot of the harder stuff. But I also know how much I needed an imagination for the future when Penny was little, and how much even glimpses of older kids and adults with Down syndrome helped, so hopefully we are doing our little part towards offering a similar vision.
I'm struggling to know how to respond to this, or even if I should, as the sibling of a disabled person whose parents did get divorced. I don't want to sound a note of doom! I do appreciate this encouraging message and I do know lots of parents of disabled children who have healthy, thriving marriages. I will just say, about the siblings--the major difficulty for siblings is exactly what you've unintentionally described here: the subtle, unintended pressure to be the ones without any problems. I'm definitely not saying you are pressuring your abled children in this way. I think it can often come from inside the child themselves, as they desperately want to provide whatever the family needs from them. I certainly wouldn't have been able to articulate that as a teenager. It has taken me several decades to begin to unpack this.
Sarah--I'm so glad you did choose to respond here. One of my concerns in writing this essay is that so many families do experience strain and hardship related to having a disabled child and divorce is sometimes the outcome. I have friends with kids with disabilities who have divorced, and others who haven't. So I don't take your statement of the reality of your family situation as any sort of doomsday warning, just of truth.
And thank you for your note of caution about siblings. I think we will all be working out our issues for many years to come, and I just hope we are giving our kids permission to feel and eventually to explore what was going on with them.
On another note, I'm hoping that you and Janet (also on this comment thread) might be able to meet each other as adults living with siblings with disabilities...
Thanks! I don't see Janet's comment?
I think you should be able to see it here (it was a different comment thread): https://amyjuliabecker.substack.com/p/does-disability-mean-tragedy/comment/116795426
My brothers, their wives, and I are planning our parents' 60th Wedding Anniversary Celebration for next month. I was born with slight cerebral palsy and a significant speech impairment. I had hundreds of hours of therapy. I earned a Master's degree. While I attended college, my grandma with early-stage dementia lived in our home. My three younger, non-disabled brothers are compassionate men!
It's so hard to know what the factors are that go into any marriage that thrives or doesn't, but I love hearing stories of other families affected by disability where things have gone well! Thank you so much for this beautiful picture of intergenerational faithfulness and love!
I, too, kept hearing about the high rates of divorce among parents with children with disabilities. I, too, did my research because the numbers thrown around didn't match my observations.
In our case, our son has humbled us and brought us closer.
I will share this article with my email list.
I hope Penny gets in the program of her dreams when the time comes. It's so great to see that such programs have become more numerous since we looked at postsecondary programs for our son. The program of his dreams was Riverview School. When he got in, we were more excited than parents whose kids get into every single Ivy League!
It's amazing how easy it is to pass along negative information--I'm glad we are both helping to correct the narrative here.
I have heard great things about Riverview! I would love to hear more about your experience!
I have 3 children. They are now adults. The younger two are twins and one of the is mentally disabled. I have written about her in many of my stories and had a book ( The Shape of Normal) published . I appreciate what you wrote! IIt took me a long time to completely accept it. A journey of acceptance.
Yes--family life is complex. There's a lot for me to accept about myself as a mom and about each of our kids. I feel like that happens over and over again, which leads me back to your words that it is a journey!