Do you know how exhausting special needs parenting is?



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.

 

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  

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Valerie
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Valerie

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….

Rob Gorski
Admin

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…

Kimberly
Guest
Kimberly

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… Read more »

Guest
Guest
Guest

Can I please share this is a good read!

Guest
Guest
Guest

I know. Hang in there U0001f340

Guest
Guest
Guest

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!

Guest
Guest
Guest

O YES I DO.

Guest
Guest
Guest

Ho yes we do we have 2 with and 2 without xjx

Valerie
Guest
Valerie

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….

Rob Gorski
Admin

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…

Kimberly
Guest
Kimberly

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… Read more »

Valerie
Guest
Valerie

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….

Rob Gorski
Admin

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…

Kimberly
Guest
Kimberly

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… Read more »

Valerie
Guest
Valerie

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….

Rob Gorski
Admin

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…

Kimberly
Guest
Kimberly

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… Read more »

Valerie
Guest
Valerie

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….

Rob Gorski
Admin

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…

Kimberly
Guest
Kimberly

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… Read more »

Valerie
Guest
Valerie

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….

Rob Gorski
Admin

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…

Kimberly
Guest
Kimberly

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… Read more »

Valerie
Guest
Valerie

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….

Rob Gorski
Admin

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…

Kimberly
Guest
Kimberly

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… Read more »

Valerie
Guest
Valerie

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….

Rob Gorski
Guest
Rob Gorski

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…

KWedel
Guest
KWedel

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… Read more »

digger22
Guest
digger22

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… Read more »

Rob Gorski
Admin

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?

digger22
Guest
digger22

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… Read more »

digger22
Guest
digger22

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… Read more »

Rob Gorski
Admin

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?

digger22
Guest
digger22

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… Read more »

digger22
Guest
digger22

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… Read more »

Rob Gorski
Admin

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?

digger22
Guest
digger22

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… Read more »

digger22
Guest
digger22

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… Read more »

Rob Gorski
Admin

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?

digger22
Guest
digger22

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… Read more »

digger22
Guest
digger22

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… Read more »

Rob Gorski
Admin

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?

digger22
Guest
digger22

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… Read more »

digger22
Guest
digger22

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… Read more »

Rob Gorski
Admin

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?

digger22
Guest
digger22

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… Read more »

digger22
Guest
digger22

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… Read more »

Rob Gorski
Admin

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?

digger22
Guest
digger22

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… Read more »

Robyn Lundeen
Guest
Robyn Lundeen

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

Robyn Lundeen
Guest
Robyn Lundeen

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

Robyn Lundeen
Guest
Robyn Lundeen

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

digger22
Guest
digger22

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… Read more »

Rob Gorski
Guest
Rob Gorski

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?

digger22
Guest
digger22

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… Read more »

Robyn Lundeen
Guest
Robyn Lundeen

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

Robyn Lundeen
Guest
Robyn Lundeen

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

Robyn Lundeen
Guest
Robyn Lundeen

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

Robyn Lundeen
Guest
Robyn Lundeen

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

Robyn Lundeen
Guest
Robyn Lundeen

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

Lindy L Cavness
Guest
Lindy L Cavness

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.