Nancy, these photos of Sheila are precious. As I read, I was rallying in my heart for you and for Sheila. I remember having to educate some of Sarah's specialists on the use of language concerning her diagnosis and personhood--that who she is as a person is not limited to, nor defined by, her diagnosis but that her diagnosis was, of course, an aspect of her life that required support.
I could see your mama's heart in this letter advocating for Sheila. And I know how much you love her, Nancy. I'm so grateful you keep sharing her with us.
Jeannie, it seems sad we have to remind specialist of our children's humanity. At least most of the specialists I've known were teachable. Except for one notible one.
I just noticed above the word *divinity. It was supposed to be *dignity, auto correct changed it to *divinity and I changed it back to *dignity before hitting send. But autocorrect and divinity had the last word, apparently.
How's your day going? Sheila appears to be messing with mine. 😂
I agree so much with everything you say. If all of us could look at other people with eyes that saw first all that they were capable of, how differently we would see the world. Using people’s strengths as a foundation upon which to build, and as a springboard to further growth….how inspired, and how inspiring! What a wonderful way to choose to look at the world and at our fellow travelers in life.
I love this so much Nancy. What a powerful advocate you were for Sheila. I agree with everything you say…but would like to add that, having seen many children with Downs included in mainstream classroom settings, the other children also benefitted hugely…it was an important humanising experience for them too.
Nancy, thank you for tagging me in your share of this. I know I only "know" you from comments on my own page, but since my audience over here is smaller, I do actually feel like I "know" you in a way! I am honored to be able to read this about your daughter, it's an absolutely beautiful piece of writing and an incredibly essential reminder (especially in today's political climate) that viewing children, including children with disabilities, as capable, worthy of respect, equal to others, etc is not some modern newfangled idea but a rallying cry for years!
Kelsie, I've been following on Facebook as Nancy E Ed as well. I admire and respect the way you see past children's behavior and recognize possible causes. The fact that you stress play based therapies is exactly what we were looking for with Sheila. Wishing you the best in your newest adventures!
This was a wonderful article about Sheila and I'm so sorry you lost such a beautiful child. Thank you for letting me know a little about her. This brightened my day in a sobering way. I'm so sorry you both had to go through all of that, but I'm so happy she had you to advocate for her. 🫂
Thank you Nancy for sharing this article about your daughter Sheila along with the delightful pictures😎. It is so needed (and perhaps, showing my bias), for nurse/public health nurse home visitors to read. Your important message can be overlooked and frankly, not considered by folks who should know this.
Thank you for sharing this letter and your experiences with us! It is clear you understood your daughter's needs and abilities far better than the "professionals". And as we are all amateurs in regards to each other, it is a great reminder to put away our need for sameness and embrace everyone's uniqueness. ❤
Nancy A thank you. We learned early on the parents live with their children and care for their babies 24/7. We are there, we are immersed in what are children are doing. Yes, professionals may have education, book knowledge, but that is not the same as every day hands on care.
We have a perspective that the best professionals listen to and respect. We can learn from each, and we should to bring the best out of our children. All of our children, with and without disabilities.
When we see each one as a unique individual, that is when they get the best from us.
I couldn't agree with you more, Esther! We lived in a small, rural community. We couldn't go anywhere without someone coming up to Sheila, greeting her, then introducing themselves and telling us how they knew her. Many of these folks where parents or grandparents of students that knew Sheila from school.
Nancy, these photos of Sheila are precious. As I read, I was rallying in my heart for you and for Sheila. I remember having to educate some of Sarah's specialists on the use of language concerning her diagnosis and personhood--that who she is as a person is not limited to, nor defined by, her diagnosis but that her diagnosis was, of course, an aspect of her life that required support.
I could see your mama's heart in this letter advocating for Sheila. And I know how much you love her, Nancy. I'm so grateful you keep sharing her with us.
Jeannie, it seems sad we have to remind specialist of our children's humanity. At least most of the specialists I've known were teachable. Except for one notible one.
It is sad, Nancy. I am thinking more about this today, because there seems to be a theme showing up in my comments from people in one of three groups:
Educators who worked in special education;
People who share specific memories of someone they knew/loved who had a disability and whose influence profoundly shaped their worldview and lives;
People who have a diagnosis or disability and what their lived experience is like.
Which makes me wonder: what does this mean? It seems that more work needs to be done to educate the world about recognizing the dignity in all people.
Yes, recognizing the divinity in all people is an area where more work needs to be done.
Sometimes it feels like a bucket with a hole in the bottom. It's a never ending chore to fill that bucket.
A great metaphor, Nancy—a bucket with a hole in the bottom.
I just noticed above the word *divinity. It was supposed to be *dignity, auto correct changed it to *divinity and I changed it back to *dignity before hitting send. But autocorrect and divinity had the last word, apparently.
How's your day going? Sheila appears to be messing with mine. 😂
You know what, Nancy? When I read divinity, it made sense to me. So I guess it was supposed to remain as that word.
How is Sheila messing with your day? Anything specific? I am just enjoying this gorgeous spring weather!
I agree so much with everything you say. If all of us could look at other people with eyes that saw first all that they were capable of, how differently we would see the world. Using people’s strengths as a foundation upon which to build, and as a springboard to further growth….how inspired, and how inspiring! What a wonderful way to choose to look at the world and at our fellow travelers in life.
Thank you. Having a child with a disability taught me so much! The biggest take away is that we need to build on our own and other people's strengths.
I love this so much Nancy. What a powerful advocate you were for Sheila. I agree with everything you say…but would like to add that, having seen many children with Downs included in mainstream classroom settings, the other children also benefitted hugely…it was an important humanising experience for them too.
Nancy, thank you for tagging me in your share of this. I know I only "know" you from comments on my own page, but since my audience over here is smaller, I do actually feel like I "know" you in a way! I am honored to be able to read this about your daughter, it's an absolutely beautiful piece of writing and an incredibly essential reminder (especially in today's political climate) that viewing children, including children with disabilities, as capable, worthy of respect, equal to others, etc is not some modern newfangled idea but a rallying cry for years!
Kelsie, I've been following on Facebook as Nancy E Ed as well. I admire and respect the way you see past children's behavior and recognize possible causes. The fact that you stress play based therapies is exactly what we were looking for with Sheila. Wishing you the best in your newest adventures!
This was a wonderful article about Sheila and I'm so sorry you lost such a beautiful child. Thank you for letting me know a little about her. This brightened my day in a sobering way. I'm so sorry you both had to go through all of that, but I'm so happy she had you to advocate for her. 🫂
Even when she was an infant, I knew our time would be limited with her. We ended up having 36.5 years with her. But, oh how she is missed.
I still feel we were blessed by an endearing presence of selfless love.
Thank you Nancy for sharing this article about your daughter Sheila along with the delightful pictures😎. It is so needed (and perhaps, showing my bias), for nurse/public health nurse home visitors to read. Your important message can be overlooked and frankly, not considered by folks who should know this.
Sharon, thank you for reading this. Please, don't hesitate to share it with people you think it might help.
I will. 👍🏽🥰
Thank you for sharing this letter and your experiences with us! It is clear you understood your daughter's needs and abilities far better than the "professionals". And as we are all amateurs in regards to each other, it is a great reminder to put away our need for sameness and embrace everyone's uniqueness. ❤
Nancy A thank you. We learned early on the parents live with their children and care for their babies 24/7. We are there, we are immersed in what are children are doing. Yes, professionals may have education, book knowledge, but that is not the same as every day hands on care.
We have a perspective that the best professionals listen to and respect. We can learn from each, and we should to bring the best out of our children. All of our children, with and without disabilities.
When we see each one as a unique individual, that is when they get the best from us.
I couldn't agree with you more, Esther! We lived in a small, rural community. We couldn't go anywhere without someone coming up to Sheila, greeting her, then introducing themselves and telling us how they knew her. Many of these folks where parents or grandparents of students that knew Sheila from school.