Something that I think people often underestimate about special needs parenting is just how exhausting it is. I can personally attest to how exhausting it is.
In fact, I’m exhausted right now.
Special needs parenting is 25 hours a day, eight days a week and 366 days a year for the rest of our natural lives. It’s all hours of the day and night. Personally, I don’t even remember the last night of uninterrupted sleep we had in our house.
Very few things come easy, and most things are in fact, a constant struggle. Whether it’s potty training or just trying to get a sensory sensitive child to eat, there’s always something that needs your complete attention.
Don’t even get me started on school.
If you have a special needs child, you will likely have to fight, not only for your child’s rights but for the services and therapies they require to learn. Some families are lucky and have an excellent school system but sadly that’s not the case for a large number of others.
Even if you have services in place, bullying is a huge issue that’s very hard to address and is all too prevalent in the lives of our special needs children.
Things that most families take for granted, like their kids making friends, being able to express themselves or for that matter even talking, are things that many special needs parents struggle without.
Can you imagine if your child was unable to tell you about what happened at school? Perhaps they don’t feel well or are scared but have no way to let you know what’s going on? Many special needs parents don’t have to imagine because they live with these situations, each and every day.
Special needs parents are constantly on alert, even in the middle of the night. Living a life of hypervigilance is utterly exhausting and stressful.
Trying to live in the moment can be difficult because so many are terrified about what the future holds for the child they love, and that can be all-consuming.
I could go on and on because there are so many reasons that special needs parenting is exhausting. Perhaps one of the most exhausting parts of special needs parenting is that fact that the world doesn’t slow down. Not only do special needs parents have to worry about these and many other things, they also have to worry about the same things that everyone else in the world has to.
There’s no way around the fact that special needs parenting is exhausting. It should be known that special needs parenting is also very rewarding as well.
My goal with this article is to show just a few of the reasons that special needs parenting is or at least can be exhausting.
Something else to help put things into perspective is this. Some studies show that the stress level experienced by Autism Moms is most closely related to that of combat soldiers.
Hopefully, this gives you a better understanding of what it’s like to be a special needs parent. This is just one aspect of special needs parenting, but it’s an important one.
And some of us won’t have to worry about the “empty nest” syndrome, they will most likely be with us always. I really don’t see my son going off to college, starting a career, getting married, etc. I suppose he could live in a group home eventually but that still leaves room for concern. Just thinking about the future is exhausting also….
I get it.. My Gavin will be the same way. There would have to be some level of constant supervision for him and the future is scary..
You are not alone…
I am there with you. My daughter will be 9 in March. She has Down syndrome and autism. She is non-verbal and still in diapers and we are pretty sure that will always be the case. She will always be with us. My big fear is what will happen to her when my husband and I pass. While every parent’s nightmare is their child passing before them. For me sadly it is the opposite. I want her to go minutes before me. I could not imagine life without her but also can’t imagine leaving this earth knowing no one will care for and love her like we will. I just hope I live a really long life because I want her to have a long life too. While I know I don’t have a future of relaxating with my husband and enjoying our golden years traveling and having time to ourselves I am kind of comforted knowing I will never feel the sadness of my baby moving out.
I feel you! Had one (Asperger) and it was…difficult!
Happy to report that thanks to intense ther… https://t.co/g8cImEyvZT
Both my parents were. My brother had severe ADHD in the 80s with a severe learning disability. He s… https://t.co/qawUEnjFkE
I am neither a night owl nor an early bird. I am a #PermanentlyExhaustedPigeon. Some days we sleep… https://t.co/SglyOGa2TP
Oh, I can totally relate. https://t.co/gJx5UtRNTq
Yes. You keep fighting. To get through the day. To make them happy. To bring that smile, even if it… https://t.co/W5sfENpOvb
Shoot all I know is tiered and loneliness
I do know
I’m reminded every single day. I need a nap right now…..
Yes I do! Sometimes I look back and wonder how I got this far . Then I remember I had no choice
Yes I have 3 with health needs. My eldest has behaviour issues & sleep issues (possibly Asd still w… https://t.co/JAfqPWBebe
Yes I do.
This is so true. Worrying about their life at school (with the bullying, isolation, not receiving mods/accommos) takes up must of my day while I also teach full-time. It’s mentally and emotionally exhausting. I prefer not to leave the house once I get home from work bc I’m totally exhausted. People don’t understand.
Count me as someone who understands.. ☺
my son is 33, and I’ve been a single mother for most his life… I am exhausted. *sigh 🙂 yet I know I have choices always, and chose to keep him home with me as the alternatives are painful to even consider, so I hate to complain about it. …… Oh, and he has a dual diagnosis. Still he is the light of my life so exhausted or not I will care for him always
More then 1/2 my stress evaporated when I pulled my son out of school and removed everything that would stimulate him that I could from sight and only presented what I had to and what he wanted. Once he adjusted I slowly over yeas added back into our house and he is well adjusted and undamaged. He’s autistic without the excess anxiety. He won’t go places that are too ‘peoply’ unless he absolutely needs too but he can. He still doesn’t use the phone but he can. We’ve looked for ways he can be in life and still be autistic the same way a deaf or blind person would. I even design our menu with him learning how he can cook healthy without using sharp things that make him nervous or having to touch things that he’s sure will make his head explode. I’m not going to try to make him fit into others lives. I’m going to teach him to build the one he wants that will see him happy, healthy and successful to the degree that he’s pleased with.
That’s called a sensory diet and that’s not easy to do, so good on you.. ☺ How old was your son when you pulled him out of school? Did you have issues with the school fighting you on that?
second grade was the 1st full time home schooling and even though they were glad to see him go they would do nothing to help like advice on what he should be learning so I punted. i’ll take him in to get his GED eventually but he’s 15 and learning college level programming. Computers will be his life so i’m not wasting any time getting him trained up. He’s learning to develop video games and build websites so he has many eggs in his basket so he should have any problem making a living for himself and his progress has already been noticed. proud doesn’t begin to explain how I feel about him.
And some of us won’t have to worry about the “empty nest” syndrome, they will most likely be with us always. I really don’t see my son going off to college, starting a career, getting married, etc. I suppose he could live in a group home eventually but that still leaves room for concern. Just thinking about the future is exhausting also….
I get it.. My Gavin will be the same way. There would have to be some level of constant supervision for him and the future is scary..
You are not alone…
I am there with you. My daughter will be 9 in March. She has Down syndrome and autism. She is non-verbal and still in diapers and we are pretty sure that will always be the case. She will always be with us. My big fear is what will happen to her when my husband and I pass. While every parent’s nightmare is their child passing before them. For me sadly it is the opposite. I want her to go minutes before me. I could not imagine life without her but also can’t imagine leaving this earth knowing no one will care for and love her like we will. I just hope I live a really long life because I want her to have a long life too. While I know I don’t have a future of relaxating with my husband and enjoying our golden years traveling and having time to ourselves I am kind of comforted knowing I will never feel the sadness of my baby moving out.
More then 1/2 my stress evaporated when I pulled my son out of school and removed everything that would stimulate him that I could from sight and only presented what I had to and what he wanted. Once he adjusted I slowly over yeas added back into our house and he is well adjusted and undamaged. He’s autistic without the excess anxiety. He won’t go places that are too ‘peoply’ unless he absolutely needs too but he can. He still doesn’t use the phone but he can. We’ve looked for ways he can be in life and still be autistic the same way a deaf or blind person would. I even design our menu with him learning how he can cook healthy without using sharp things that make him nervous or having to touch things that he’s sure will make his head explode. I’m not going to try to make him fit into others lives. I’m going to teach him to build the one he wants that will see him happy, healthy and successful to the degree that he’s pleased with.
That’s called a sensory diet and that’s not easy to do, so good on you.. ☺ How old was your son when you pulled him out of school? Did you have issues with the school fighting you on that?
second grade was the 1st full time home schooling and even though they were glad to see him go they would do nothing to help like advice on what he should be learning so I punted. i’ll take him in to get his GED eventually but he’s 15 and learning college level programming. Computers will be his life so i’m not wasting any time getting him trained up. He’s learning to develop video games and build websites so he has many eggs in his basket so he should have any problem making a living for himself and his progress has already been noticed. proud doesn’t begin to explain how I feel about him.
And some of us won’t have to worry about the “empty nest” syndrome, they will most likely be with us always. I really don’t see my son going off to college, starting a career, getting married, etc. I suppose he could live in a group home eventually but that still leaves room for concern. Just thinking about the future is exhausting also….
I get it.. My Gavin will be the same way. There would have to be some level of constant supervision for him and the future is scary..
You are not alone…
I am there with you. My daughter will be 9 in March. She has Down syndrome and autism. She is non-verbal and still in diapers and we are pretty sure that will always be the case. She will always be with us. My big fear is what will happen to her when my husband and I pass. While every parent’s nightmare is their child passing before them. For me sadly it is the opposite. I want her to go minutes before me. I could not imagine life without her but also can’t imagine leaving this earth knowing no one will care for and love her like we will. I just hope I live a really long life because I want her to have a long life too. While I know I don’t have a future of relaxating with my husband and enjoying our golden years traveling and having time to ourselves I am kind of comforted knowing I will never feel the sadness of my baby moving out.
my son is 33, and I’ve been a single mother for most his life… I am exhausted. *sigh 🙂 yet I know I have choices always, and chose to keep him home with me as the alternatives are painful to even consider, so I hate to complain about it. …… Oh, and he has a dual diagnosis. Still he is the light of my life so exhausted or not I will care for him always
my son is 33, and I’ve been a single mother for most his life… I am exhausted. *sigh 🙂 yet I know I have choices always, and chose to keep him home with me as the alternatives are painful to even consider, so I hate to complain about it. …… Oh, and he has a dual diagnosis. Still he is the light of my life so exhausted or not I will care for him always
More then 1/2 my stress evaporated when I pulled my son out of school and removed everything that would stimulate him that I could from sight and only presented what I had to and what he wanted. Once he adjusted I slowly over yeas added back into our house and he is well adjusted and undamaged. He’s autistic without the excess anxiety. He won’t go places that are too ‘peoply’ unless he absolutely needs too but he can. He still doesn’t use the phone but he can. We’ve looked for ways he can be in life and still be autistic the same way a deaf or blind person would. I even design our menu with him learning how he can cook healthy without using sharp things that make him nervous or having to touch things that he’s sure will make his head explode. I’m not going to try to make him fit into others lives. I’m going to teach him to build the one he wants that will see him happy, healthy and successful to the degree that he’s pleased with.
That’s called a sensory diet and that’s not easy to do, so good on you.. ☺ How old was your son when you pulled him out of school? Did you have issues with the school fighting you on that?
second grade was the 1st full time home schooling and even though they were glad to see him go they would do nothing to help like advice on what he should be learning so I punted. i’ll take him in to get his GED eventually but he’s 15 and learning college level programming. Computers will be his life so i’m not wasting any time getting him trained up. He’s learning to develop video games and build websites so he has many eggs in his basket so he should have any problem making a living for himself and his progress has already been noticed. proud doesn’t begin to explain how I feel about him.
my son is 33, and I’ve been a single mother for most his life… I am exhausted. *sigh 🙂 yet I know I have choices always, and chose to keep him home with me as the alternatives are painful to even consider, so I hate to complain about it. …… Oh, and he has a dual diagnosis. Still he is the light of my life so exhausted or not I will care for him always
More then 1/2 my stress evaporated when I pulled my son out of school and removed everything that would stimulate him that I could from sight and only presented what I had to and what he wanted. Once he adjusted I slowly over yeas added back into our house and he is well adjusted and undamaged. He’s autistic without the excess anxiety. He won’t go places that are too ‘peoply’ unless he absolutely needs too but he can. He still doesn’t use the phone but he can. We’ve looked for ways he can be in life and still be autistic the same way a deaf or blind person would. I even design our menu with him learning how he can cook healthy without using sharp things that make him nervous or having to touch things that he’s sure will make his head explode. I’m not going to try to make him fit into others lives. I’m going to teach him to build the one he wants that will see him happy, healthy and successful to the degree that he’s pleased with.
That’s called a sensory diet and that’s not easy to do, so good on you.. ☺ How old was your son when you pulled him out of school? Did you have issues with the school fighting you on that?
second grade was the 1st full time home schooling and even though they were glad to see him go they would do nothing to help like advice on what he should be learning so I punted. i’ll take him in to get his GED eventually but he’s 15 and learning college level programming. Computers will be his life so i’m not wasting any time getting him trained up. He’s learning to develop video games and build websites so he has many eggs in his basket so he should have any problem making a living for himself and his progress has already been noticed. proud doesn’t begin to explain how I feel about him.
And some of us won’t have to worry about the “empty nest” syndrome, they will most likely be with us always. I really don’t see my son going off to college, starting a career, getting married, etc. I suppose he could live in a group home eventually but that still leaves room for concern. Just thinking about the future is exhausting also….
I get it.. My Gavin will be the same way. There would have to be some level of constant supervision for him and the future is scary..
You are not alone…
I am there with you. My daughter will be 9 in March. She has Down syndrome and autism. She is non-verbal and still in diapers and we are pretty sure that will always be the case. She will always be with us. My big fear is what will happen to her when my husband and I pass. While every parent’s nightmare is their child passing before them. For me sadly it is the opposite. I want her to go minutes before me. I could not imagine life without her but also can’t imagine leaving this earth knowing no one will care for and love her like we will. I just hope I live a really long life because I want her to have a long life too. While I know I don’t have a future of relaxating with my husband and enjoying our golden years traveling and having time to ourselves I am kind of comforted knowing I will never feel the sadness of my baby moving out.
my son is 33, and I’ve been a single mother for most his life… I am exhausted. *sigh 🙂 yet I know I have choices always, and chose to keep him home with me as the alternatives are painful to even consider, so I hate to complain about it. …… Oh, and he has a dual diagnosis. Still he is the light of my life so exhausted or not I will care for him always
More then 1/2 my stress evaporated when I pulled my son out of school and removed everything that would stimulate him that I could from sight and only presented what I had to and what he wanted. Once he adjusted I slowly over yeas added back into our house and he is well adjusted and undamaged. He’s autistic without the excess anxiety. He won’t go places that are too ‘peoply’ unless he absolutely needs too but he can. He still doesn’t use the phone but he can. We’ve looked for ways he can be in life and still be autistic the same way a deaf or blind person would. I even design our menu with him learning how he can cook healthy without using sharp things that make him nervous or having to touch things that he’s sure will make his head explode. I’m not going to try to make him fit into others lives. I’m going to teach him to build the one he wants that will see him happy, healthy and successful to the degree that he’s pleased with.
That’s called a sensory diet and that’s not easy to do, so good on you.. ☺ How old was your son when you pulled him out of school? Did you have issues with the school fighting you on that?
second grade was the 1st full time home schooling and even though they were glad to see him go they would do nothing to help like advice on what he should be learning so I punted. i’ll take him in to get his GED eventually but he’s 15 and learning college level programming. Computers will be his life so i’m not wasting any time getting him trained up. He’s learning to develop video games and build websites so he has many eggs in his basket so he should have any problem making a living for himself and his progress has already been noticed. proud doesn’t begin to explain how I feel about him.
And some of us won’t have to worry about the “empty nest” syndrome, they will most likely be with us always. I really don’t see my son going off to college, starting a career, getting married, etc. I suppose he could live in a group home eventually but that still leaves room for concern. Just thinking about the future is exhausting also….
I get it.. My Gavin will be the same way. There would have to be some level of constant supervision for him and the future is scary..
You are not alone…
I am there with you. My daughter will be 9 in March. She has Down syndrome and autism. She is non-verbal and still in diapers and we are pretty sure that will always be the case. She will always be with us. My big fear is what will happen to her when my husband and I pass. While every parent’s nightmare is their child passing before them. For me sadly it is the opposite. I want her to go minutes before me. I could not imagine life without her but also can’t imagine leaving this earth knowing no one will care for and love her like we will. I just hope I live a really long life because I want her to have a long life too. While I know I don’t have a future of relaxating with my husband and enjoying our golden years traveling and having time to ourselves I am kind of comforted knowing I will never feel the sadness of my baby moving out.
my son is 33, and I’ve been a single mother for most his life… I am exhausted. *sigh 🙂 yet I know I have choices always, and chose to keep him home with me as the alternatives are painful to even consider, so I hate to complain about it. …… Oh, and he has a dual diagnosis. Still he is the light of my life so exhausted or not I will care for him always
More then 1/2 my stress evaporated when I pulled my son out of school and removed everything that would stimulate him that I could from sight and only presented what I had to and what he wanted. Once he adjusted I slowly over yeas added back into our house and he is well adjusted and undamaged. He’s autistic without the excess anxiety. He won’t go places that are too ‘peoply’ unless he absolutely needs too but he can. He still doesn’t use the phone but he can. We’ve looked for ways he can be in life and still be autistic the same way a deaf or blind person would. I even design our menu with him learning how he can cook healthy without using sharp things that make him nervous or having to touch things that he’s sure will make his head explode. I’m not going to try to make him fit into others lives. I’m going to teach him to build the one he wants that will see him happy, healthy and successful to the degree that he’s pleased with.
That’s called a sensory diet and that’s not easy to do, so good on you.. ☺ How old was your son when you pulled him out of school? Did you have issues with the school fighting you on that?
second grade was the 1st full time home schooling and even though they were glad to see him go they would do nothing to help like advice on what he should be learning so I punted. i’ll take him in to get his GED eventually but he’s 15 and learning college level programming. Computers will be his life so i’m not wasting any time getting him trained up. He’s learning to develop video games and build websites so he has many eggs in his basket so he should have any problem making a living for himself and his progress has already been noticed. proud doesn’t begin to explain how I feel about him.
And some of us won’t have to worry about the “empty nest” syndrome, they will most likely be with us always. I really don’t see my son going off to college, starting a career, getting married, etc. I suppose he could live in a group home eventually but that still leaves room for concern. Just thinking about the future is exhausting also….
I get it.. My Gavin will be the same way. There would have to be some level of constant supervision for him and the future is scary..
You are not alone…
I am there with you. My daughter will be 9 in March. She has Down syndrome and autism. She is non-verbal and still in diapers and we are pretty sure that will always be the case. She will always be with us. My big fear is what will happen to her when my husband and I pass. While every parent’s nightmare is their child passing before them. For me sadly it is the opposite. I want her to go minutes before me. I could not imagine life without her but also can’t imagine leaving this earth knowing no one will care for and love her like we will. I just hope I live a really long life because I want her to have a long life too. While I know I don’t have a future of relaxating with my husband and enjoying our golden years traveling and having time to ourselves I am kind of comforted knowing I will never feel the sadness of my baby moving out.
Ho yes we do we have 2 with and 2 without xjx
O YES I DO.
Yes. Yes we do. I care for the kids when Mark is struggling and vise versa… Many days we struggle even with team parenting. You and many other families are in our prayers daily! Keep your chin up!
I know. Hang in there U0001f340
Can I please share this is a good read!
my son is 33, and I’ve been a single mother for most his life… I am exhausted. *sigh 🙂 yet I know I have choices always, and chose to keep him home with me as the alternatives are painful to even consider, so I hate to complain about it. …… Oh, and he has a dual diagnosis. Still he is the light of my life so exhausted or not I will care for him always
More then 1/2 my stress evaporated when I pulled my son out of school and removed everything that would stimulate him that I could from sight and only presented what I had to and what he wanted. Once he adjusted I slowly over yeas added back into our house and he is well adjusted and undamaged. He’s autistic without the excess anxiety. He won’t go places that are too ‘peoply’ unless he absolutely needs too but he can. He still doesn’t use the phone but he can. We’ve looked for ways he can be in life and still be autistic the same way a deaf or blind person would. I even design our menu with him learning how he can cook healthy without using sharp things that make him nervous or having to touch things that he’s sure will make his head explode. I’m not going to try to make him fit into others lives. I’m going to teach him to build the one he wants that will see him happy, healthy and successful to the degree that he’s pleased with.
That’s called a sensory diet and that’s not easy to do, so good on you.. ☺ How old was your son when you pulled him out of school? Did you have issues with the school fighting you on that?
second grade was the 1st full time home schooling and even though they were glad to see him go they would do nothing to help like advice on what he should be learning so I punted. i’ll take him in to get his GED eventually but he’s 15 and learning college level programming. Computers will be his life so i’m not wasting any time getting him trained up. He’s learning to develop video games and build websites so he has many eggs in his basket so he should have any problem making a living for himself and his progress has already been noticed. proud doesn’t begin to explain how I feel about him.
And some of us won’t have to worry about the “empty nest” syndrome, they will most likely be with us always. I really don’t see my son going off to college, starting a career, getting married, etc. I suppose he could live in a group home eventually but that still leaves room for concern. Just thinking about the future is exhausting also….
I get it.. My Gavin will be the same way. There would have to be some level of constant supervision for him and the future is scary..
You are not alone…
I am there with you. My daughter will be 9 in March. She has Down syndrome and autism. She is non-verbal and still in diapers and we are pretty sure that will always be the case. She will always be with us. My big fear is what will happen to her when my husband and I pass. While every parent’s nightmare is their child passing before them. For me sadly it is the opposite. I want her to go minutes before me. I could not imagine life without her but also can’t imagine leaving this earth knowing no one will care for and love her like we will. I just hope I live a really long life because I want her to have a long life too. While I know I don’t have a future of relaxating with my husband and enjoying our golden years traveling and having time to ourselves I am kind of comforted knowing I will never feel the sadness of my baby moving out.
my son is 33, and I’ve been a single mother for most his life… I am exhausted. *sigh 🙂 yet I know I have choices always, and chose to keep him home with me as the alternatives are painful to even consider, so I hate to complain about it. …… Oh, and he has a dual diagnosis. Still he is the light of my life so exhausted or not I will care for him always
More then 1/2 my stress evaporated when I pulled my son out of school and removed everything that would stimulate him that I could from sight and only presented what I had to and what he wanted. Once he adjusted I slowly over yeas added back into our house and he is well adjusted and undamaged. He’s autistic without the excess anxiety. He won’t go places that are too ‘peoply’ unless he absolutely needs too but he can. He still doesn’t use the phone but he can. We’ve looked for ways he can be in life and still be autistic the same way a deaf or blind person would. I even design our menu with him learning how he can cook healthy without using sharp things that make him nervous or having to touch things that he’s sure will make his head explode. I’m not going to try to make him fit into others lives. I’m going to teach him to build the one he wants that will see him happy, healthy and successful to the degree that he’s pleased with.
That’s called a sensory diet and that’s not easy to do, so good on you.. ☺ How old was your son when you pulled him out of school? Did you have issues with the school fighting you on that?
second grade was the 1st full time home schooling and even though they were glad to see him go they would do nothing to help like advice on what he should be learning so I punted. i’ll take him in to get his GED eventually but he’s 15 and learning college level programming. Computers will be his life so i’m not wasting any time getting him trained up. He’s learning to develop video games and build websites so he has many eggs in his basket so he should have any problem making a living for himself and his progress has already been noticed. proud doesn’t begin to explain how I feel about him.
And some of us won’t have to worry about the “empty nest” syndrome, they will most likely be with us always. I really don’t see my son going off to college, starting a career, getting married, etc. I suppose he could live in a group home eventually but that still leaves room for concern. Just thinking about the future is exhausting also….
I get it.. My Gavin will be the same way. There would have to be some level of constant supervision for him and the future is scary..
You are not alone…
I am there with you. My daughter will be 9 in March. She has Down syndrome and autism. She is non-verbal and still in diapers and we are pretty sure that will always be the case. She will always be with us. My big fear is what will happen to her when my husband and I pass. While every parent’s nightmare is their child passing before them. For me sadly it is the opposite. I want her to go minutes before me. I could not imagine life without her but also can’t imagine leaving this earth knowing no one will care for and love her like we will. I just hope I live a really long life because I want her to have a long life too. While I know I don’t have a future of relaxating with my husband and enjoying our golden years traveling and having time to ourselves I am kind of comforted knowing I will never feel the sadness of my baby moving out.