What a cutie Sarah is! I have not seen her on video before, and this was a delight. Please share with her that I love that she is able to speak to us all so freely (with your wise support) and is willing to educate me about the kinds of things she has to go through, just because of being born a bit different. It is opening my mind and allowing my compassion to flow through. That's got to be good for everyone!
Thank you for sharing that, Jane. Sarah is opening up more and her counselor tells me that this is good for her social skills development and in building her self-confidence!
I loved getting to hear from Sarah. She's a light. The videos will be great for her self-esteem and all kinds of good stuff, but having you right there with her, having her back and knowing she can count on you, is so special, too. I look forward to hearing more from y'all!
Thanks, Emma. I think you're right that there's something extra special about the dynamic of both of us doing these videos together. Thank you for noticing that.
Sarah is growing up to be a wonderful ambassador for Apert syndrome. She is truly becoming a spokesperson with your support and assistance. Blessings to you both.
That’s a great point, Nancy—that Sarah is an ambassador of sorts. I have heard others say this, too, and it makes me think about her condition and how she is internalizing what her diagnosis means to her. I appreciate your perspective so much!
Emily Perl Kingsley was a writer for Sesame Street. She had a son with Down syndrome in 1974. She decided it was important to start including children with disabilities on the show. Her son, Jason, would be one of the first. Sheila got to see him in re-runs of the show. It is not only important for the Jasons, Sheilas, Sarahs and other children with disabilities, to be able to see themselves to internalize what her diagnosis means to her. It is so important for typical children to see what people with disabilities are capable of. Our children are so much more than just a diagnosis.
Oh yes, Nancy, to all of this! When Sarah started preschool, I thought of how good it was for the kids in her class to get to know someone their age who was born with a disability—to learn that Sarah liked grilled cheese and Minnie Mouse and blowing bubbles and listening to Raffi songs, just like they did. That she knew how to smile and play on the swings and eat an ice cream cone, just like they did. I didn’t grow up around a lot of people with disabilities, but the few I did know profoundly touched my life. What you wrote here reminded me of that. Thank you.
Sarah I want to wish you a happy belated birthday 🎁 🎉 🎂 for the BIG 12 years old I am sorry that I missed it but I did not know you then but I do now so here it comes…. Happy Birthday Sarah 🧡🩵💛💚🩷🙏🏽🙏🙏🏻 and now that we are becoming acquaintances I will not miss your birthday celebration next year when you will be 13…. Did the Easter 🐣 bunny 🐰 stop bye ✌️ 👋 to see you today ? I hope 🤞🏼 so otherwise I will tell Mr. Bunny 🐰 I am not happy with him.. please let me know if he came to visit you when you was asleep.
I want to wish you a H And I will say a prayer to Jesus for your entire family on Easter Sunday! May God bless you mom and dad and your brothers and sisters..🙏🏻🙏🏽🙏✝️☮️💜☀️🌞🌸🌼🌺 bye Sarah your new friend..
What a cute little note, James! Sarah got a gift card for some earrings from the Easter Bunny (she recently got her ears pierced), along with some chocolate and a kitty coloring book. She was happy!
I've watched "The Sarah Effect" here on Substack, and it is absolutely phenomenal. She has such a presence, and your support of her is a whole other level of amazing.
Back in 2000, I took a year sabbatical from my teaching job to live with my cousin (who was going through a divorce, changing his career, and relocating his home to a new state all at the same time) and care for his son with autism. I had the pleasure of taking classes at Rutger's in autism research, and being trained in ABA therapy and being one of his many therapist (he did 30 hours of ABA a week - it was intense. When I did this, my aunt and uncle lived with my cousin as well. It took us four adults to care for this one child and manage all his health care and get him ready for kindergarten. I"ll never forget that time in my life.
That’s really incredible, Teri Leigh, and a testament, really, of the level of unique care it takes to help a kiddo with ASD to live a full and complete life! I appreciate you being here with us. Sarah loves doing these videos with me. She requests them now. :) And we call all of you our “Substack friends,” but you are an especially special friend, Teri Leigh. I appreciate you and the gifts you share so generously with me and with others.
there was something so precious about that ABA time with my cousin Abraham. His autism is so severe that he now lives in a group home where he can get 24/7 care. he’s still non-verbal and has significant self-injurious behaviors, but he is also the most brilliant expression of joy I have ever seen.
Well that was precious. I’m looking forward to more of your essays and more of Sarah’s unfiltered wisdom. I laughed out loud when she asked what you were wearing during the birth.
Thank you, @Alysa Miles ! And thank you for your generous financial offering, too. That means a lot. I hope you will be happy with the quality of the work I offer here.
Happy Birthday, Sarah! Thank you for sharing with us, especially the part about "You are brave, and you can do anything." I wish someone had told me that when I was your age.
Jeannie, I'm so glad you are asking for help. I know how hard it is. But you should always ask. It takes a village to raise one child, not five, and not a child with Apert syndrome. I cannot even imagine how hard it must be, on a daily basis.
And/ But, Sarah is just a gift! I laughed out loud when she asked you what you were wearing when you gave birth to her. It was a beautiful moment. And cried when she asked you if she was going to die soon. Her message that "I'm here. I didn't die" is a message to every one of us, to remember every day, not just on our birthdays. Every day we are alive and are loved is a miracle. Sending you both so much love.
That's a beautiful and poignant point you make, Imola - that "every day we are alive and are loved is a miracle." It's strange how a brush with our mortality sharpens this reality. I guess I've lived with life in one hand and death in the other since the day Sarah was born. Thank you for your love ❤️
Beautifully written, Jeannie. Your intelligence, compassion and energy continue to astound me. Sending kindest thoughts and prayers for you and your lovely family. And belated birthday wishes for Sarah from my wife and me. And to Sarah: fantastic job, young lady!
That means a lot, Rafael. Glad to see your name pop up here today, since it's been a while! I'm glad the videos are really solidifying Sarah's story and the relationship she and I share.
Hey there Miss Sarah. Happy Bday from Montana. Just think next year you will be 13 and a teenager. Have a wonderful day young lady. Love you muchly, 'Berta
Hi 'Berta! Thanks for the well wishes for Sarah. I have been showing her all the outpouring of love from her "Substack friends," as we call them. Wish we could visit you in Montana--I love that state, so beautiful!
Happy belated Birthday Sarah. My birthday was also Sunday March 16th. I am 61 years. I have a feeling I am going to really enjoy this page and your story.
What a cutie Sarah is! I have not seen her on video before, and this was a delight. Please share with her that I love that she is able to speak to us all so freely (with your wise support) and is willing to educate me about the kinds of things she has to go through, just because of being born a bit different. It is opening my mind and allowing my compassion to flow through. That's got to be good for everyone!
Thank you for sharing that, Jane. Sarah is opening up more and her counselor tells me that this is good for her social skills development and in building her self-confidence!
I loved getting to hear from Sarah. She's a light. The videos will be great for her self-esteem and all kinds of good stuff, but having you right there with her, having her back and knowing she can count on you, is so special, too. I look forward to hearing more from y'all!
Thanks, Emma. I think you're right that there's something extra special about the dynamic of both of us doing these videos together. Thank you for noticing that.
Sarah is growing up to be a wonderful ambassador for Apert syndrome. She is truly becoming a spokesperson with your support and assistance. Blessings to you both.
That’s a great point, Nancy—that Sarah is an ambassador of sorts. I have heard others say this, too, and it makes me think about her condition and how she is internalizing what her diagnosis means to her. I appreciate your perspective so much!
Emily Perl Kingsley was a writer for Sesame Street. She had a son with Down syndrome in 1974. She decided it was important to start including children with disabilities on the show. Her son, Jason, would be one of the first. Sheila got to see him in re-runs of the show. It is not only important for the Jasons, Sheilas, Sarahs and other children with disabilities, to be able to see themselves to internalize what her diagnosis means to her. It is so important for typical children to see what people with disabilities are capable of. Our children are so much more than just a diagnosis.
Leaping off my soapbox now.💙💛💙
Oh yes, Nancy, to all of this! When Sarah started preschool, I thought of how good it was for the kids in her class to get to know someone their age who was born with a disability—to learn that Sarah liked grilled cheese and Minnie Mouse and blowing bubbles and listening to Raffi songs, just like they did. That she knew how to smile and play on the swings and eat an ice cream cone, just like they did. I didn’t grow up around a lot of people with disabilities, but the few I did know profoundly touched my life. What you wrote here reminded me of that. Thank you.
Thank you for sharing your story. Sarah has a beautiful pure spirit and we're privileged to meet both of you here on Substack.
I'm happy to read how dedicated you are to your family. Genuine love has no limits.
Thank you for being a light in this dark world by sharing your stories.
Ciska, I am so glad you have found some light in our little Substack corner. We are glad you are here with us!
Sarah shares her beautiful and wise soul so freely and generously!
Thank you, Kitty. She is learning how to grow into taking more ownership of her story - what is told and how or when it is told.
Sarah I want to wish you a happy belated birthday 🎁 🎉 🎂 for the BIG 12 years old I am sorry that I missed it but I did not know you then but I do now so here it comes…. Happy Birthday Sarah 🧡🩵💛💚🩷🙏🏽🙏🙏🏻 and now that we are becoming acquaintances I will not miss your birthday celebration next year when you will be 13…. Did the Easter 🐣 bunny 🐰 stop bye ✌️ 👋 to see you today ? I hope 🤞🏼 so otherwise I will tell Mr. Bunny 🐰 I am not happy with him.. please let me know if he came to visit you when you was asleep.
I want to wish you a H And I will say a prayer to Jesus for your entire family on Easter Sunday! May God bless you mom and dad and your brothers and sisters..🙏🏻🙏🏽🙏✝️☮️💜☀️🌞🌸🌼🌺 bye Sarah your new friend..
James
What a cute little note, James! Sarah got a gift card for some earrings from the Easter Bunny (she recently got her ears pierced), along with some chocolate and a kitty coloring book. She was happy!
And Sarah deserves those Easter 🐣 moments.. 🐰
I've watched "The Sarah Effect" here on Substack, and it is absolutely phenomenal. She has such a presence, and your support of her is a whole other level of amazing.
Back in 2000, I took a year sabbatical from my teaching job to live with my cousin (who was going through a divorce, changing his career, and relocating his home to a new state all at the same time) and care for his son with autism. I had the pleasure of taking classes at Rutger's in autism research, and being trained in ABA therapy and being one of his many therapist (he did 30 hours of ABA a week - it was intense. When I did this, my aunt and uncle lived with my cousin as well. It took us four adults to care for this one child and manage all his health care and get him ready for kindergarten. I"ll never forget that time in my life.
this is all to say, I'm in awe of you.
That’s really incredible, Teri Leigh, and a testament, really, of the level of unique care it takes to help a kiddo with ASD to live a full and complete life! I appreciate you being here with us. Sarah loves doing these videos with me. She requests them now. :) And we call all of you our “Substack friends,” but you are an especially special friend, Teri Leigh. I appreciate you and the gifts you share so generously with me and with others.
there was something so precious about that ABA time with my cousin Abraham. His autism is so severe that he now lives in a group home where he can get 24/7 care. he’s still non-verbal and has significant self-injurious behaviors, but he is also the most brilliant expression of joy I have ever seen.
I believe that wholeheartedly, Teri Leigh. I have witnessed that myself in people with profound disabilities.
Well that was precious. I’m looking forward to more of your essays and more of Sarah’s unfiltered wisdom. I laughed out loud when she asked what you were wearing during the birth.
Thank you, @Alysa Miles ! And thank you for your generous financial offering, too. That means a lot. I hope you will be happy with the quality of the work I offer here.
Oh, I already am! It is my pleasure!
Birthday Blessings sweet Sarah...You are a brave, courageous girl and you too can do anything! Thank you for sharing your wisdom with me today. 💕
Aww, thank you so much, Casey. Your kindness means a lot to us, and I'm glad Sarah's message touched your heart.
Happy Birthday, Sarah! Thank you for sharing with us, especially the part about "You are brave, and you can do anything." I wish someone had told me that when I was your age.
Thanks, Doreen. The beautiful thing is, we can learn that we are brave at any age!
Jeannie, I'm so glad you are asking for help. I know how hard it is. But you should always ask. It takes a village to raise one child, not five, and not a child with Apert syndrome. I cannot even imagine how hard it must be, on a daily basis.
And/ But, Sarah is just a gift! I laughed out loud when she asked you what you were wearing when you gave birth to her. It was a beautiful moment. And cried when she asked you if she was going to die soon. Her message that "I'm here. I didn't die" is a message to every one of us, to remember every day, not just on our birthdays. Every day we are alive and are loved is a miracle. Sending you both so much love.
That's a beautiful and poignant point you make, Imola - that "every day we are alive and are loved is a miracle." It's strange how a brush with our mortality sharpens this reality. I guess I've lived with life in one hand and death in the other since the day Sarah was born. Thank you for your love ❤️
Thank you and Sarah for this important reminder!
Thanks, friend! I will get to your voice message soon.
Happy birthday, Sarah 🎉
Thank you, Jonathan! And for your generous offering, too.
Beautifully written, Jeannie. Your intelligence, compassion and energy continue to astound me. Sending kindest thoughts and prayers for you and your lovely family. And belated birthday wishes for Sarah from my wife and me. And to Sarah: fantastic job, young lady!
That means a lot, Rafael. Glad to see your name pop up here today, since it's been a while! I'm glad the videos are really solidifying Sarah's story and the relationship she and I share.
WOW Jeannie - complicated is an understatement! Thank you for sharing Sarah with us and for being an amazing mama!
I'm so glad you're here with us, Stephanie. Yes, I suppose complicated is an understatement, but I didn't have a better way to explain it hahaha! :)
I can only imagine Jeannie.
Hey there Miss Sarah. Happy Bday from Montana. Just think next year you will be 13 and a teenager. Have a wonderful day young lady. Love you muchly, 'Berta
Hi 'Berta! Thanks for the well wishes for Sarah. I have been showing her all the outpouring of love from her "Substack friends," as we call them. Wish we could visit you in Montana--I love that state, so beautiful!
I would love to show Sarah my state.
Maybe someday, 'Berta!
Happy belated Birthday Sarah. My birthday was also Sunday March 16th. I am 61 years. I have a feeling I am going to really enjoy this page and your story.
Wonderful, Daniel. Happy belated birthday to you! We wish you the best and hope that being 61 is a great year for you. Happy to have you with us!