Thank you for this. My son is 30 has DS and autism. The older I get the harder it is to manage our lives as a family. Most days my husband and I feel very alone. Others have no idea what it is like.
Thank you so much! You're telling my story ... My son is 17 with multiple needs and I'm a single mom doing it all. I felt so alone and it's nice to know that I'm not. I'm looking forward to watching the unseen movie when it's available
I could not have said it better. Total truth in all your words. I have a 39 yo son with Down Syndrome and autism. I feel like I do not belong with either groups. My son moved into an adult family home in September 2019 he was kicked out September 2024 due to aggressive behaviors. He is now back home. Over the years in this adult family home (AFH) so many negative things happen to him. His overall experience there was horrific! When he was asked to leave I had already been looking for other living arrangements for him. So many of his behaviors came about during his years there plus he has acquired many health issues. A week after moving in he ended up in the ICU on a ventilator for RSV. He was hospitalized 6 weeks and came very close to dying. He was intubated and reintubate 3x, he had a couple of major seizures and coded, (no history of seizures) and a blood clot. He has never been the same since. He has also developed many other medical problems. Early 2020 -2 months of recovering from his RSV, Covid hit. His AFH went into lockdown. It just spiraled from there. So often I see the pictures of my son from birth to teens and he was so cute and so loving and life was kind of like having any other child. I mean we had all his therapies and he reached milestones later but he was so darn cute! I wonder too what happened to that cute little boy. How I want him back. Live seemed so much easier back then. When I see these FB support groups for Down Syndrome and see all the so very cute little ones and hear the hopes and dreams of the parents and their excitement, I want to say you have no idea what awaits you and your child. However right now I believe they need that and feel it. When harder times hit they will have formed that very strong bond with their child. I remember all those feelings so well. You are right about supports trying to find them as our children age becomes harder and harder and by the time they are 18 and considered adults and move into a new phase of their lives supports seem almost nonexistent. You read articles about the need to support caregivers but they are always referring to children taking care aging parents. I have been there too. However they fail to recognize the parents taking care of the children with disabilities, which is a lifetime commitment. They just don’t seem to recognize it of just don’t think about it. We have to be louder and visible because most people have absolutely no idea and just haven’t made a connection.
I have 2 children non verbal with severe autism a girl and a boy. I relate to this so much and the feeling of isolation and worry I feel is unbearable at times.
My son is 19. He lives in a residential school. I miss him so much every day. It's terrible. I think about this every day. To me he will always be my adorable baby boy. But to the outside world he probably looks like a deranged man. I need help really bad.
You are not alone. You sound like an amazing mom and caregiver. Have you ever consider having professional help for your son either at your house or residential facility? Sounds like either you, someone else or even himself could be seriously injured if he is not managed professionally.
Thank you Jesse, yours and your families commitment is amazing. I'm caregiver for family member. So much more you manage when carerecepiant is your child. I think we also need to step up if we see a parent or family member being hurt, they matter as much as person with disability. We do need to give more funds and choices for family members caring for special needs child, government prayfully see important and difficult job you and family do. Jesus cares, He is way...John 14:6, praying
I think even at age 9, 10, anything that isn’t toddler or early elementary, maybe depending on the size of the boy (I think especially boys), are looked at with disdain and fear. My son is 9 years old, and I don’t take him to parks or stores any longer. I just never know when he might get triggered and scream and yell profanities (the profanities he learned from his therapeutic school he attends). And the looks are from everyone, even the children, and of course other parents, nannies… and often a few comments as well on how undisciplined he is, how he needs a spanking, or how spoiled he is. So now the only place I’ll take him is the beach, but even that is getting tough. We have to go on an off day so there aren’t too many people there. But yeah, he’s too old now for people to have sympathy and view him as “cute”… at age 9, he’s almost as tall as I am. What am I going to do when he’s taller and weighs more than I do? What if something happens to my husband, and I’m the sole care taker? And we’ve gotten him every service under the sun, even when it’s like finding a needle in a haystack finding providers in our area… not to mention expensive.
Thank you for this. My son is 30 has DS and autism. The older I get the harder it is to manage our lives as a family. Most days my husband and I feel very alone. Others have no idea what it is like.
💙💙
💛💙💛💙
Thank you so much! You're telling my story ... My son is 17 with multiple needs and I'm a single mom doing it all. I felt so alone and it's nice to know that I'm not. I'm looking forward to watching the unseen movie when it's available
I have left parks this way so many times!
I could not have said it better. Total truth in all your words. I have a 39 yo son with Down Syndrome and autism. I feel like I do not belong with either groups. My son moved into an adult family home in September 2019 he was kicked out September 2024 due to aggressive behaviors. He is now back home. Over the years in this adult family home (AFH) so many negative things happen to him. His overall experience there was horrific! When he was asked to leave I had already been looking for other living arrangements for him. So many of his behaviors came about during his years there plus he has acquired many health issues. A week after moving in he ended up in the ICU on a ventilator for RSV. He was hospitalized 6 weeks and came very close to dying. He was intubated and reintubate 3x, he had a couple of major seizures and coded, (no history of seizures) and a blood clot. He has never been the same since. He has also developed many other medical problems. Early 2020 -2 months of recovering from his RSV, Covid hit. His AFH went into lockdown. It just spiraled from there.
So often I see the pictures of my son from birth to teens and he was so cute and so loving and life was kind of like having any other child. I mean we had all his therapies and he reached milestones later but he was so darn cute! I wonder too what happened to that cute little boy. How I want him back. Live seemed so much easier back then.
When I see these FB support groups for Down Syndrome and see all the so very cute little ones and hear the hopes and dreams of the parents and their excitement, I want to say you have no idea what awaits you and your child. However right now I believe they need that and feel it. When harder times hit they will have formed that very strong bond with their child. I remember all those feelings so well.
You are right about supports trying to find them as our children age becomes harder and harder and by the time they are 18 and considered adults and move into a new phase of their lives supports seem almost nonexistent. You read articles about the need to support caregivers but they are always referring to children taking care aging parents. I have been there too. However they fail to recognize the parents taking care of the children with disabilities, which is a lifetime commitment. They just don’t seem to recognize it of just don’t think about it. We have to be louder and visible because most people have absolutely no idea and just haven’t made a connection.
I have 2 children non verbal with severe autism a girl and a boy. I relate to this so much and the feeling of isolation and worry I feel is unbearable at times.
My son is 19. He lives in a residential school. I miss him so much every day. It's terrible. I think about this every day. To me he will always be my adorable baby boy. But to the outside world he probably looks like a deranged man. I need help really bad.
Love you, Rivkah💙💙
You are not alone. You sound like an amazing mom and caregiver. Have you ever consider having professional help for your son either at your house or residential facility? Sounds like either you, someone else or even himself could be seriously injured if he is not managed professionally.
Thank you Jesse, yours and your families commitment is amazing. I'm caregiver for family member. So much more you manage when carerecepiant is your child. I think we also need to step up if we see a parent or family member being hurt, they matter as much as person with disability. We do need to give more funds and choices for family members caring for special needs child, government prayfully see important and difficult job you and family do. Jesus cares, He is way...John 14:6, praying
Your not alone Jess. I also understood the demands of caregiving for my medically fragile big boy son in diapers🙏♥️
Magnificent My friend
I think even at age 9, 10, anything that isn’t toddler or early elementary, maybe depending on the size of the boy (I think especially boys), are looked at with disdain and fear. My son is 9 years old, and I don’t take him to parks or stores any longer. I just never know when he might get triggered and scream and yell profanities (the profanities he learned from his therapeutic school he attends). And the looks are from everyone, even the children, and of course other parents, nannies… and often a few comments as well on how undisciplined he is, how he needs a spanking, or how spoiled he is. So now the only place I’ll take him is the beach, but even that is getting tough. We have to go on an off day so there aren’t too many people there. But yeah, he’s too old now for people to have sympathy and view him as “cute”… at age 9, he’s almost as tall as I am. What am I going to do when he’s taller and weighs more than I do? What if something happens to my husband, and I’m the sole care taker? And we’ve gotten him every service under the sun, even when it’s like finding a needle in a haystack finding providers in our area… not to mention expensive.