I learn so much from you, every single essay. There are so many people who need to feel like they've just been seen -- and this will do it for many. Desi is very lucky to have you and David as her parents. Hopefully, with medical breakthroughs every day, there will be a way for Desi to live life fully, even after you are gone!
I understand about Rafi's hunger that will live with him forever. We have my son's-in-law oldest sister who lives with us. She was denied food during her childhood and then with the men in all three of her major relationships. She still (after 4 years of living with us) sneaks food, eat three helpings, and has snacks hidden in her bedroom and her bathroom.
She will be 49 next week so when we had our first conversation about how there was no need in hoarding food because we would just get more. She told me about her last "boyfriend" kept a locked cabinet in the kitchen with "his foods" even though she paid for every bit of it plus paid the bills. When I asked what food was in there, it took every single ounce of willpower I had to not laugh out loud when she told me Vienna Sausage and Sweet Sue chicken and dumpling cans.
She still has three helping dinners sometimes and sneaks food late in the evening, but no one ever says a single solitary word to her and then she'll lay off for a while.
WOW just wow! It is inconceivable to me what kind of fortitude and courage it takes, what kind of self-regulation is required of you and David and the thousands of other families out there dealing with similar situations to stay steady in the face of such drama. I stand in awe of your selflessness! And to show up so full throttle for your own life, for all you produce, create, and contribute! Really! You are remarkable people! 🌟🌟🌟🌟💖
Thank you so much for writing this. I’m glad you didn’t save it for your journal. I needed to read this. Our great grand is six years old. She’s been diagnosed on the spectrum and has been nonverbal until about six months ago. She was singing for a few years, no words, mostly humming and la la la kind of singing. I worry about her future. The kids are south of us and we see them twice a year. Thank God for online. My story, your story, these stories are more common than not. Thank you for sharing some light. I love the art of the meltdowns! Thank again for sharing all of this, all of you. I think we should all write more that is intended for our journals. xo
Thank you for this amazing article. You made me feel like I am there with you. Such a brilliant description of what you experience and the love you both have and give to Desi.
Once again, thank you Kim (and David) for your honesty, your vulnerability and your insight. It is also timely for me as one of my granddaughters over in Canada is currently in the process of being assessed, if that’s the right word. I know very little about the reality of living with autism but I suspect I’m about to find out a lot more very soon. Warmest regards.
I call the "rumble" the volcano getting ready to erupt lava all over you and your family, including Desi. I have my child clients draw, if they can, volcanos, adding on the left side things that set them off, and on the right side, things that calm them down.
Maybe we adults need to draw our own volcanos and what calms us.
I think the world of anyone who adopts children. ❤️
Thank you for this. There is so much resonance for me here relating to my journey parenting my own ASD/PDA teenager (who is high-masking, so we cannot get a diagnosis and thus cannot get funding for any appropriate support... I feel daily like I'm deep in the woods without a compass, blanket, water or food).
A wonderful, but horrifying family story. Every parent has deep empathy for you and respect for how you and your husband handle the pain every day. God bless your family. Write on.
Thanks for *not* just putting it in your journal Kim. As a parent this is something I’ve never experienced, and to hear it told it’s equally frightening and amazing.
I had an acquaintance whose 19 year old non verbal son would have meltdowns. He was 6”8” and over 280 lbs. He didn’t throw things, he just moved them across the floor - including the full refrigerator or the living room couch with the family seated on it.
“Does it scare you?” I asked her. “Only in that I think he might hurt himself” she said. “You learn to cope.”
All the best to you and your family in the journey ahead ❤️
This stage of parenting was the hardest for my marriage. We ended up buying a little house in the country to have a refuge for my wife (and I) to escape to and regulate. The intensity of teenage neurodivergant kids is terrifying.
Sometimes it settles well and sometimes it doesnt. I have one kid in each camp right now in early adulthood and the divergence is a lot to take in.
Protecting my own joy and happiness needs to be a priority along side raising these girls. I can only help when Im ok.
This is such an excellent description of what I called hormonal rages in our middle daughter. I did better with remaining calm through it, while my husband would get caught up in his own meltdown.
I know I’ve told you a million times I love your writing, mostly because I’m comforted that we aren’t the only ones living like this.
All that matters to Desi, is that you were there. And that you will remain.
❤️❤️
Bless you, Kim. You got this!
You love her so dearly and so well. ❤️
I learn so much from you, every single essay. There are so many people who need to feel like they've just been seen -- and this will do it for many. Desi is very lucky to have you and David as her parents. Hopefully, with medical breakthroughs every day, there will be a way for Desi to live life fully, even after you are gone!
I understand about Rafi's hunger that will live with him forever. We have my son's-in-law oldest sister who lives with us. She was denied food during her childhood and then with the men in all three of her major relationships. She still (after 4 years of living with us) sneaks food, eat three helpings, and has snacks hidden in her bedroom and her bathroom.
She will be 49 next week so when we had our first conversation about how there was no need in hoarding food because we would just get more. She told me about her last "boyfriend" kept a locked cabinet in the kitchen with "his foods" even though she paid for every bit of it plus paid the bills. When I asked what food was in there, it took every single ounce of willpower I had to not laugh out loud when she told me Vienna Sausage and Sweet Sue chicken and dumpling cans.
She still has three helping dinners sometimes and sneaks food late in the evening, but no one ever says a single solitary word to her and then she'll lay off for a while.
WOW just wow! It is inconceivable to me what kind of fortitude and courage it takes, what kind of self-regulation is required of you and David and the thousands of other families out there dealing with similar situations to stay steady in the face of such drama. I stand in awe of your selflessness! And to show up so full throttle for your own life, for all you produce, create, and contribute! Really! You are remarkable people! 🌟🌟🌟🌟💖
Thank you so much for writing this. I’m glad you didn’t save it for your journal. I needed to read this. Our great grand is six years old. She’s been diagnosed on the spectrum and has been nonverbal until about six months ago. She was singing for a few years, no words, mostly humming and la la la kind of singing. I worry about her future. The kids are south of us and we see them twice a year. Thank God for online. My story, your story, these stories are more common than not. Thank you for sharing some light. I love the art of the meltdowns! Thank again for sharing all of this, all of you. I think we should all write more that is intended for our journals. xo
Thank you for this amazing article. You made me feel like I am there with you. Such a brilliant description of what you experience and the love you both have and give to Desi.
Once again, thank you Kim (and David) for your honesty, your vulnerability and your insight. It is also timely for me as one of my granddaughters over in Canada is currently in the process of being assessed, if that’s the right word. I know very little about the reality of living with autism but I suspect I’m about to find out a lot more very soon. Warmest regards.
Thank you, KIM for sharing!!
I call the "rumble" the volcano getting ready to erupt lava all over you and your family, including Desi. I have my child clients draw, if they can, volcanos, adding on the left side things that set them off, and on the right side, things that calm them down.
Maybe we adults need to draw our own volcanos and what calms us.
I think the world of anyone who adopts children. ❤️
Thank you for this. There is so much resonance for me here relating to my journey parenting my own ASD/PDA teenager (who is high-masking, so we cannot get a diagnosis and thus cannot get funding for any appropriate support... I feel daily like I'm deep in the woods without a compass, blanket, water or food).
A wonderful, but horrifying family story. Every parent has deep empathy for you and respect for how you and your husband handle the pain every day. God bless your family. Write on.
What powerful story telling. What a powerful story. What good people you are for what you do.
Thanks for *not* just putting it in your journal Kim. As a parent this is something I’ve never experienced, and to hear it told it’s equally frightening and amazing.
I had an acquaintance whose 19 year old non verbal son would have meltdowns. He was 6”8” and over 280 lbs. He didn’t throw things, he just moved them across the floor - including the full refrigerator or the living room couch with the family seated on it.
“Does it scare you?” I asked her. “Only in that I think he might hurt himself” she said. “You learn to cope.”
All the best to you and your family in the journey ahead ❤️
This stage of parenting was the hardest for my marriage. We ended up buying a little house in the country to have a refuge for my wife (and I) to escape to and regulate. The intensity of teenage neurodivergant kids is terrifying.
Sometimes it settles well and sometimes it doesnt. I have one kid in each camp right now in early adulthood and the divergence is a lot to take in.
Protecting my own joy and happiness needs to be a priority along side raising these girls. I can only help when Im ok.
This is such an excellent description of what I called hormonal rages in our middle daughter. I did better with remaining calm through it, while my husband would get caught up in his own meltdown.