I loved listening to your conversation with Katherine Wolf this week! We are at the beginning of our journey with our daughter with disabilities (physical and intellectual) as she is still a toddler, but I guess the questions I am currently pondering as we think about the future are 1.)to what degree do we pioneer a space for her that has what she needs where we already are (or want to go)—both in resources and community—and to what degree do we find them elsewhere? I guess what I mean is: when do we create the structures and when do we go looking for them, whether through a physical move or through commuting to places where they already exist? 2.) To what degree is it important for our family’s community to include others who are also navigating disability?
Thanks so much for sharing these questions—I hope I’m able to address some/all of these! And my short answer is that it’s both—you both pioneer and adapt and invite your community to receive her and their own different, expansive way of being…
All of the above! Reimagining Adulthood is so key, especially with busy and high achieving siblings. Anxiety and fears, in the context of living and loving in the moment. Trusting and building community when it can feel so exhausting- with the ebb and flow of therapists, teachers, caretakers, the emotional energy that comes from attaching and then grieving loss is exacerbated for kids/adults with special needs…and the family caretakers finding and nurturing friends and community both with and without their loved one with IDD. Staying strong and physically healthy. Nurturing marriage. How to separate from loved one with iDD to allow for true independence without mom and dad? So many relevant and important topics!! Thank you Amy Julia!! Betsy
I know--there's SO much and yet finding a way to just take the next step and not get totally overwhelmed by all of it is part of what I think we all need. Thanks for these thoughts!
How can we find a community we trust to care for our child that will help her be more independent? Can we have this without having to do all the work ourselves? Will we ever feel like we can stop advocating?
Being a caregiver in my elderly years. I am having a hard time imagining how I can be healthy enough to do this with the strain of caregiving right now impacting my health.
What gets in the way of imagining a good future for your family?
The uncertainty of not knowing if your child will a) be capable of independence 2) want it. Are we pushing (all the therapy, IEP, medical interventions) for independence too hard now, when we aren't sure what the child will want as an adult?
What would help you believe a good future is possible?
Seeing varying examples of other families with disabled adult children thriving.
Thank you so much for these--they are so helpful in thinking about how an abstract concept like "connect to community" becomes a lived reality that addresses things like being a caregiver in elderly years and more.
Allowing the various stages of grief to not overwhelm-- these days it's knowing that my son (9, Ds) is appreciated by friends, but never invited to the birthday parties. How do we grow into those truths without letting them drive the bus of our emotions and reactions? The slog of advocacy-- the never ending marathon of engaging spaces negotiating where your child fits, and asking, begging, and sometimes yelling, for what they need-- how do we also treat those who have the power to allocate those resources as human (and flawed) as well? "This isn't how I thought it would be": I like the idea of Reimagining Adulthood from what we expected, to what we have received. Thank you always for your invitations :)
Thank you for these insightful comments. I so appreciate your awareness of the humanity of the people who sometimes disappoint us. And I am so with you on the friendship piece and figuring out how to care for ourselves and our kids.
Fear is always getting in the way. A low level of anxiety as well. It’s knowing that at any moment all things could go wrong. But also it could be ok. But holding our breath hoping that somehow we will accomplish whatever the goal is at the moment.
Yes, how do we live in the vulnerable place of love without being overwhelmed by fear? And how do we face the things that do go wrong with hope? There aren't easy answers there, but they are great questions relevant to many of us. Thank you!
For disabled people! What goals and dreams do parents have for their disabled children’s future? What does living a purposeful life look like? What supports will they need? What does it look like for church and society to embrace disabled adults?
That’s what I thought—thanks for confirming! I think I have two books to write—one that is more individual focused (which is what I’m working on) that has to do with disabled kids and adults and their family members believing that a good future is possible and taking steps towards that future. But then there’s another book—probably for the church?— about the role that society/culture/institutions play in making that future possible…
I loved listening to your conversation with Katherine Wolf this week! We are at the beginning of our journey with our daughter with disabilities (physical and intellectual) as she is still a toddler, but I guess the questions I am currently pondering as we think about the future are 1.)to what degree do we pioneer a space for her that has what she needs where we already are (or want to go)—both in resources and community—and to what degree do we find them elsewhere? I guess what I mean is: when do we create the structures and when do we go looking for them, whether through a physical move or through commuting to places where they already exist? 2.) To what degree is it important for our family’s community to include others who are also navigating disability?
Thanks so much for sharing these questions—I hope I’m able to address some/all of these! And my short answer is that it’s both—you both pioneer and adapt and invite your community to receive her and their own different, expansive way of being…
That is helpful! Thank you!
All of the above! Reimagining Adulthood is so key, especially with busy and high achieving siblings. Anxiety and fears, in the context of living and loving in the moment. Trusting and building community when it can feel so exhausting- with the ebb and flow of therapists, teachers, caretakers, the emotional energy that comes from attaching and then grieving loss is exacerbated for kids/adults with special needs…and the family caretakers finding and nurturing friends and community both with and without their loved one with IDD. Staying strong and physically healthy. Nurturing marriage. How to separate from loved one with iDD to allow for true independence without mom and dad? So many relevant and important topics!! Thank you Amy Julia!! Betsy
I know--there's SO much and yet finding a way to just take the next step and not get totally overwhelmed by all of it is part of what I think we all need. Thanks for these thoughts!
How can we find a community we trust to care for our child that will help her be more independent? Can we have this without having to do all the work ourselves? Will we ever feel like we can stop advocating?
Thank you so much for sharing these-- you aren't alone in asking these questions.
What feels impossible to you right now?
Being a caregiver in my elderly years. I am having a hard time imagining how I can be healthy enough to do this with the strain of caregiving right now impacting my health.
What gets in the way of imagining a good future for your family?
The uncertainty of not knowing if your child will a) be capable of independence 2) want it. Are we pushing (all the therapy, IEP, medical interventions) for independence too hard now, when we aren't sure what the child will want as an adult?
What would help you believe a good future is possible?
Seeing varying examples of other families with disabled adult children thriving.
Thank you so much for these--they are so helpful in thinking about how an abstract concept like "connect to community" becomes a lived reality that addresses things like being a caregiver in elderly years and more.
Allowing the various stages of grief to not overwhelm-- these days it's knowing that my son (9, Ds) is appreciated by friends, but never invited to the birthday parties. How do we grow into those truths without letting them drive the bus of our emotions and reactions? The slog of advocacy-- the never ending marathon of engaging spaces negotiating where your child fits, and asking, begging, and sometimes yelling, for what they need-- how do we also treat those who have the power to allocate those resources as human (and flawed) as well? "This isn't how I thought it would be": I like the idea of Reimagining Adulthood from what we expected, to what we have received. Thank you always for your invitations :)
Thank you for these insightful comments. I so appreciate your awareness of the humanity of the people who sometimes disappoint us. And I am so with you on the friendship piece and figuring out how to care for ourselves and our kids.
Fear is always getting in the way. A low level of anxiety as well. It’s knowing that at any moment all things could go wrong. But also it could be ok. But holding our breath hoping that somehow we will accomplish whatever the goal is at the moment.
Yes, how do we live in the vulnerable place of love without being overwhelmed by fear? And how do we face the things that do go wrong with hope? There aren't easy answers there, but they are great questions relevant to many of us. Thank you!
“Reimagining Adulthood”! That’s the chapter I want to read. Thanks for your work!
Okay, I'm curious to hear more--reimagining adulthood for you personally? For your brother/family? Thank you!
For disabled people! What goals and dreams do parents have for their disabled children’s future? What does living a purposeful life look like? What supports will they need? What does it look like for church and society to embrace disabled adults?
That’s what I thought—thanks for confirming! I think I have two books to write—one that is more individual focused (which is what I’m working on) that has to do with disabled kids and adults and their family members believing that a good future is possible and taking steps towards that future. But then there’s another book—probably for the church?— about the role that society/culture/institutions play in making that future possible…