Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

Autism - Support Across the Spectrum Autism - Support Across the Spectrum

maagement needs a break

Posted by on Apr. 14, 2014 at 2:42 PM
  • 23 Replies

I have to say... Im tired of managing Sam. Its so exhausting and no one understands or supports it. (except you ladies)
no.. I cant just "go to the store" when I pick Sam up from school-
no.. I cant just "make him" sit in the kids area at the gym so I can work out.
no, If Sam has a playdate on Tuesday then I cant get him to go to the dentist on Wednesday morning. So, sorry, we can just move that playdate from Thursday to Tuesday.. its "planned out".
no, sorry Aunt G, but since Sam has the dentist on Wednesday morning, you cant come over here right after for lunch. He will be grumpy, taxed from the dentist...and then our builder is coming over at 5... and I cant have Sam freaking during that--  and while I appreciate your gesture of "letting me have some time off" telling me on Monday that you have left 12-1:30 wednesday available to help me... when really, in the end thats no help. Sorry.

Its ALL about managing Sam.. and I have to say, I dislike that Hubby and I dont have lives anymore because it is all about Sam.. and what Sam CAN do, and what Sam CANT do.. and where Sam CAN go.. and where he cant go-- and where he may melt, and where we may be able to stretch him.... and UGH...

Where is Scarletts time??? Where is time for hubby and I.. cause we are managing Sam, but we are not managing what we need as a couple.

So ME, Im management.. and I desperately need a break.

Sorry... vent over.

How do you "manage" what you kid can do-- vs what you kid "cant do" and all the stuff you WANT to do-- cause its your life too?

by on Apr. 14, 2014 at 2:42 PM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-10):
SamMom912
by Gold Member on Apr. 14, 2014 at 2:43 PM

and please dont tell me to call call grandparents. we dont have them. Aunt G is the only family, and she is elderly and has the social schedule of a 16 year old cheerleader. (busy!)

kajira
by Emma on Apr. 14, 2014 at 2:49 PM

Honestly, I slap some headphones on and play video games for a couple hours and let him watch a movie.

I stick the kids in bed an hour early and spend an hour with my husband.

I find ways to work around it. I also don't let what he "can't do" stop us. I'm one of those mean mom's who kinda pushed him through all his issues and meltdowns and just wouldn't tolerate them while teaching him coping skills until he could figure it out.

I didn't baby him, and i didn't accept "no" and "I can't" for an answer.

However,I did push him then let him go home and read for 2 hours with out bugging him after said adventure. Or let him watch a movie with out anyone bugging him if he survived an entire day of errands with out complaint (or mimimal issues.)

I rewarded him when we'd do stuff for the desired behaviors and refused to give things to him just because he wanted it. If he wanted mcdonalds, he had to survive the part that had to come first. He learned to cope in order to get what he wanted, even if it was HARD. I also just had to be patient and deal with th emeltdowns and not let them control our life.

with other kids involved too, he just can't always be the center of our univerise, he's not the only person who matters, though he is one of the people in our family who matter, I just never made it all about him because it wasn't all about him every minute of every day, and he's never been allowed to think he controls us or our life, or our schedule with his behaviors.

There's pretty severe consequences for meltdowns in public, I've given him tools, communication and coping strategies, even if it's just saying, mom, I need to go to the bathroom for a few minutes to get away from the stimulation. i'm not unreasonable, but "not doing it" is not an option.

He's alot more functional then he would be if he'd been babied or catered too... and our life would be a lot messier and non functional.

rhiannonaisling
by Melanie on Apr. 14, 2014 at 4:04 PM
You might see about finding a respite agency. In southern California you can contact your local regional center and ask them for a list. I do understand where you are coming from. Between psych appointments, therapy appointments, AAC/speech appointments, karate (a must do for him), dd's cheer, and other ds's basketball (upcoming), and church on Sunday (also a must go for my son) we almost never have time. Luckily my other two are 15 and 13 so I can have them entertain him when necessary so I can have some me time and bed time for him is 8, for the 13 year old it is 8:30 (because they share a room) and dd who is 15 must be in her room by 9 but may stay up until 10. From 9-11 is time for dh and I as well as Sunday morning before the kids come in.
rhiannonaisling
by Melanie on Apr. 14, 2014 at 4:06 PM

Also see if you can figure out why certain things are can't do. If it is noise get noise canceling headphones, if it is visual you might try sunglasses or a blanket for him to cover his head with. Etc.

SamMom912
by Gold Member on Apr. 14, 2014 at 4:35 PM


Quoting rhiannonaisling: You might see about finding a respite agency. In southern California you can contact your local regional center and ask them for a list. I do understand where you are coming from. Between psych appointments, therapy appointments, AAC/speech appointments, karate (a must do for him), dd's cheer, and other ds's basketball (upcoming), and church on Sunday (also a must go for my son) we almost never have time. Luckily my other two are 15 and 13 so I can have them entertain him when necessary so I can have some me time and bed time for him is 8, for the 13 year old it is 8:30 (because they share a room) and dd who is 15 must be in her room by 9 but may stay up until 10. From 9-11 is time for dh and I as well as Sunday morning before the kids come in.

We dont qualify for respite care, I do have 2 sitters who are great with him, but, they "drain" him.. Amd he is unable to do anything after the sitter.. So IF hubby and I go out on a Saturday night, we know Sunday morning, we cant have plans for Sam. Its just that kind of managment that Im kind of frustrated by. 

i dont need "down time"... i have always been a get up and go, go go kind of girl. My best days are packed with stuff to do.. i HATE sitting around... And this kid needs to sit. 


SamMom912
by Gold Member on Apr. 14, 2014 at 4:58 PM

I dont play video games, unless. Im with Sam. 

Im talking about wanting to go to NYC for the day, walk around musesums, shops, go to ball games, good busy, crazy loud indian (too smelly, LOl)  restaurants, take the train (as we are only 40 minutes away) stuff that at 7 and an aspie is too much. i know its too much since running 3-4 errands on a weekend is the limit. Its just management... 

I miss being out in the world for the day. aspies need so much down time. im just getting a bit sit of the structure and routine and being home. Ugh!  

My husband is asleep earlier then Sam since he is off to work in his office in the city at 5:45 am.. Hubby is asleep on th couch by 8:30. 

You make it sound like. I cater. And I dont. i just know the limit is less then how Ive typically lived my life for the past 40 years.. And as an aspie kid, i get "life" like that is too much... i just miss it. 

Quoting kajira:

Honestly, I slap some headphones on and play video games for a couple hours and let him watch a movie.

I stick the kids in bed an hour early and spend an hour with my husband.

I find ways to work around it. I also don't let what he "can't do" stop us. I'm one of those mean mom's who kinda pushed him through all his issues and meltdowns and just wouldn't tolerate them while teaching him coping skills until he could figure it out.

I didn't baby him, and i didn't accept "no" and "I can't" for an answer.

However,I did push him then let him go home and read for 2 hours with out bugging him after said adventure. Or let him watch a movie with out anyone bugging him if he survived an entire day of errands with out complaint (or mimimal issues.)

I rewarded him when we'd do stuff for the desired behaviors and refused to give things to him just because he wanted it. If he wanted mcdonalds, he had to survive the part that had to come first. He learned to cope in order to get what he wanted, even if it was HARD. I also just had to be patient and deal with th emeltdowns and not let them control our life.

with other kids involved too, he just can't always be the center of our univerise, he's not the only person who matters, though he is one of the people in our family who matter, I just never made it all about him because it wasn't all about him every minute of every day, and he's never been allowed to think he controls us or our life, or our schedule with his behaviors.

There's pretty severe consequences for meltdowns in public, I've given him tools, communication and coping strategies, even if it's just saying, mom, I need to go to the bathroom for a few minutes to get away from the stimulation. i'm not unreasonable, but "not doing it" is not an option.

He's alot more functional then he would be if he'd been babied or catered too... and our life would be a lot messier and non functional.


ineedcoffeemom
by Brittaney on Apr. 14, 2014 at 5:48 PM
1 mom liked this

You and Sam have had one hell of a school year. Maybe once summer comes he'll have the day to day downtime he needs in order to handle going places. He still probably wouldn't be able to handle alot of places, but it'd be alot more than you're able to do now. Has he expressed an interesst in going any place at all? Maybe he could help you plan a day trip somewhere. It would ofcourse need quiet places to go while out and about (does he like the library?) but you could at least be out of the house.

Also ... when you have a babysitter, do they try to interact with Sam? I would be curious if you told Sam they would leave him alone the whole time ... he could just have ipad or video game time while you were out ... if that would cause him less stress and you could still have a productive day the next day.

kajira
by Emma on Apr. 14, 2014 at 8:09 PM

No I don't think you cater to sam, I just think you do a lot mor ein one day than I as an autistic adult could handle, so I don't end up in a lot of those situation sbecause I don't ever plan that much for one day...

You describe field trips, going out to eat, then going to your parents house - that as a functional adult woudl make ME need 2-3 days to recover afterwards and I'm not sam.

Part of it, is as an autistic adult myself, I know my own limitations and I don't set myself up to fail most of the time by planning too much in one day.

For someone who's not wired like that, ti would be really hard to understand that to remain functional, you have to cut back on a day to day basis, for long term functionality.

The on the go lifestyle for someone who thrives in it - but for an autistic person who's drained more then stimulated by sensory stuff, or processing, it's just way to much.

I remember as a kid going to school was so bad I'd take 2-3 hours after I got home in my room before I could even come back out and eat food, or do anything else or even look at another human being again.

So, all the extra activities you guys do on a regular basis... I'd have exploded. seriously. I don't know how you guys do it and have him communicate as effectively with you as he does. I personally don't think you cater, I think you do too much and struggle to understand why it's always going to be too much for an autistic person.

Quoting SamMom912:

I dont play video games, unless. Im with Sam. 

Im talking about wanting to go to NYC for the day, walk around musesums, shops, go to ball games, good busy, crazy loud indian (too smelly, LOl)  restaurants, take the train (as we are only 40 minutes away) stuff that at 7 and an aspie is too much. i know its too much since running 3-4 errands on a weekend is the limit. Its just management... 

I miss being out in the world for the day. aspies need so much down time. im just getting a bit sit of the structure and routine and being home. Ugh!  

My husband is asleep earlier then Sam since he is off to work in his office in the city at 5:45 am.. Hubby is asleep on th couch by 8:30. 

You make it sound like. I cater. And I dont. i just know the limit is less then how Ive typically lived my life for the past 40 years.. And as an aspie kid, i get "life" like that is too much... i just miss it. 

Quoting kajira:

Honestly, I slap some headphones on and play video games for a couple hours and let him watch a movie.

I stick the kids in bed an hour early and spend an hour with my husband.

I find ways to work around it. I also don't let what he "can't do" stop us. I'm one of those mean mom's who kinda pushed him through all his issues and meltdowns and just wouldn't tolerate them while teaching him coping skills until he could figure it out.

I didn't baby him, and i didn't accept "no" and "I can't" for an answer.

However,I did push him then let him go home and read for 2 hours with out bugging him after said adventure. Or let him watch a movie with out anyone bugging him if he survived an entire day of errands with out complaint (or mimimal issues.)

I rewarded him when we'd do stuff for the desired behaviors and refused to give things to him just because he wanted it. If he wanted mcdonalds, he had to survive the part that had to come first. He learned to cope in order to get what he wanted, even if it was HARD. I also just had to be patient and deal with th emeltdowns and not let them control our life.

with other kids involved too, he just can't always be the center of our univerise, he's not the only person who matters, though he is one of the people in our family who matter, I just never made it all about him because it wasn't all about him every minute of every day, and he's never been allowed to think he controls us or our life, or our schedule with his behaviors.

There's pretty severe consequences for meltdowns in public, I've given him tools, communication and coping strategies, even if it's just saying, mom, I need to go to the bathroom for a few minutes to get away from the stimulation. i'm not unreasonable, but "not doing it" is not an option.

He's alot more functional then he would be if he'd been babied or catered too... and our life would be a lot messier and non functional.



SamMom912
by Gold Member on Apr. 14, 2014 at 8:18 PM

I think I struggle with finding the balance between what life was and what life needs to be with sam. 

i get I cant do everything I use to do... But Thats how I like life.. My best days are days I dont sit still a d run around going and doing and coming home to get ready to go back out.. i love it!! i dont do it... But to where my day use to contain 6/7 things--- it now contains 3... And Sam would love them to contain 2/3 and I would like to stretch to 5. LOL... At least until he is 12 and I can leave him home for part of the day! :) 


Quoting kajira:

No I don't think you cater to sam, I just think you do a lot mor ein one day than I as an autistic adult could handle, so I don't end up in a lot of those situation sbecause I don't ever plan that much for one day...

You describe field trips, going out to eat, then going to your parents house - that as a functional adult woudl make ME need 2-3 days to recover afterwards and I'm not sam.

Part of it, is as an autistic adult myself, I know my own limitations and I don't set myself up to fail most of the time by planning too much in one day.

For someone who's not wired like that, ti would be really hard to understand that to remain functional, you have to cut back on a day to day basis, for long term functionality.

The on the go lifestyle for someone who thrives in it - but for an autistic person who's drained more then stimulated by sensory stuff, or processing, it's just way to much.

I remember as a kid going to school was so bad I'd take 2-3 hours after I got home in my room before I could even come back out and eat food, or do anything else or even look at another human being again.

So, all the extra activities you guys do on a regular basis... I'd have exploded. seriously. I don't know how you guys do it and have him communicate as effectively with you as he does. I personally don't think you cater, I think you do too much and struggle to understand why it's always going to be too much for an autistic person.

Quoting SamMom912:

I dont play video games, unless. Im with Sam. 

Im talking about wanting to go to NYC for the day, walk around musesums, shops, go to ball games, good busy, crazy loud indian (too smelly, LOl)  restaurants, take the train (as we are only 40 minutes away) stuff that at 7 and an aspie is too much. i know its too much since running 3-4 errands on a weekend is the limit. Its just management... 

I miss being out in the world for the day. aspies need so much down time. im just getting a bit sit of the structure and routine and being home. Ugh!  

My husband is asleep earlier then Sam since he is off to work in his office in the city at 5:45 am.. Hubby is asleep on th couch by 8:30. 

You make it sound like. I cater. And I dont. i just know the limit is less then how Ive typically lived my life for the past 40 years.. And as an aspie kid, i get "life" like that is too much... i just miss it. 

Quoting kajira:

Honestly, I slap some headphones on and play video games for a couple hours and let him watch a movie.

I stick the kids in bed an hour early and spend an hour with my husband.

I find ways to work around it. I also don't let what he "can't do" stop us. I'm one of those mean mom's who kinda pushed him through all his issues and meltdowns and just wouldn't tolerate them while teaching him coping skills until he could figure it out.

I didn't baby him, and i didn't accept "no" and "I can't" for an answer.

However,I did push him then let him go home and read for 2 hours with out bugging him after said adventure. Or let him watch a movie with out anyone bugging him if he survived an entire day of errands with out complaint (or mimimal issues.)

I rewarded him when we'd do stuff for the desired behaviors and refused to give things to him just because he wanted it. If he wanted mcdonalds, he had to survive the part that had to come first. He learned to cope in order to get what he wanted, even if it was HARD. I also just had to be patient and deal with th emeltdowns and not let them control our life.

with other kids involved too, he just can't always be the center of our univerise, he's not the only person who matters, though he is one of the people in our family who matter, I just never made it all about him because it wasn't all about him every minute of every day, and he's never been allowed to think he controls us or our life, or our schedule with his behaviors.

There's pretty severe consequences for meltdowns in public, I've given him tools, communication and coping strategies, even if it's just saying, mom, I need to go to the bathroom for a few minutes to get away from the stimulation. i'm not unreasonable, but "not doing it" is not an option.

He's alot more functional then he would be if he'd been babied or catered too... and our life would be a lot messier and non functional.



kajira
by Emma on Apr. 14, 2014 at 8:32 PM

There are times I can do "a lot" for short periods of time.

Say, like go out and runn erands 10x a day, plus remodel a house, and move and be way more social with strangers then i'm used too -  but after a month, using every coping skill I have, I am dragging so badly now, I can barely get out of bed and take care of myself. I had to come up with a routine just to survive while my body caught up with my brain and vice versa. (okay, lack of sleep while pregnant doesn't help.)

As he gets older, there will be times he can push himself a lot harder, but the harder you push yourself, the longer it takes to recover.

I figure for every activity I do, the length of time it took to do it, is how long it takes me to recover from it.

IT's kind of like gaining weight while pregnant, if it takes 9 months to put on, it will probably take 6-9 months to get back off if done correctly.

That's how life works in just about every area of my life. There are times where I'm less effected by stimuli and sensory stuff, but I notice even if I don't feel it right that minute, or even week, i pay for it later. And when it adds up, it hits me a heck of a lot harder then if I pace myself more carefully.


Quoting SamMom912:

I think I struggle with finding the balance between what life was and what life needs to be with sam. 

i get I cant do everything I use to do... But Thats how I like life.. My best days are days I dont sit still a d run around going and doing and coming home to get ready to go back out.. i love it!! i dont do it... But to where my day use to contain 6/7 things--- it now contains 3... And Sam would love them to contain 2/3 and I would like to stretch to 5. LOL... At least until he is 12 and I can leave him home for part of the day! :) 


Quoting kajira:

No I don't think you cater to sam, I just think you do a lot mor ein one day than I as an autistic adult could handle, so I don't end up in a lot of those situation sbecause I don't ever plan that much for one day...

You describe field trips, going out to eat, then going to your parents house - that as a functional adult woudl make ME need 2-3 days to recover afterwards and I'm not sam.

Part of it, is as an autistic adult myself, I know my own limitations and I don't set myself up to fail most of the time by planning too much in one day.

For someone who's not wired like that, ti would be really hard to understand that to remain functional, you have to cut back on a day to day basis, for long term functionality.

The on the go lifestyle for someone who thrives in it - but for an autistic person who's drained more then stimulated by sensory stuff, or processing, it's just way to much.

I remember as a kid going to school was so bad I'd take 2-3 hours after I got home in my room before I could even come back out and eat food, or do anything else or even look at another human being again.

So, all the extra activities you guys do on a regular basis... I'd have exploded. seriously. I don't know how you guys do it and have him communicate as effectively with you as he does. I personally don't think you cater, I think you do too much and struggle to understand why it's always going to be too much for an autistic person.

Quoting SamMom912:

I dont play video games, unless. Im with Sam. 

Im talking about wanting to go to NYC for the day, walk around musesums, shops, go to ball games, good busy, crazy loud indian (too smelly, LOl)  restaurants, take the train (as we are only 40 minutes away) stuff that at 7 and an aspie is too much. i know its too much since running 3-4 errands on a weekend is the limit. Its just management... 

I miss being out in the world for the day. aspies need so much down time. im just getting a bit sit of the structure and routine and being home. Ugh!  

My husband is asleep earlier then Sam since he is off to work in his office in the city at 5:45 am.. Hubby is asleep on th couch by 8:30. 

You make it sound like. I cater. And I dont. i just know the limit is less then how Ive typically lived my life for the past 40 years.. And as an aspie kid, i get "life" like that is too much... i just miss it. 

Quoting kajira:

Honestly, I slap some headphones on and play video games for a couple hours and let him watch a movie.

I stick the kids in bed an hour early and spend an hour with my husband.

I find ways to work around it. I also don't let what he "can't do" stop us. I'm one of those mean mom's who kinda pushed him through all his issues and meltdowns and just wouldn't tolerate them while teaching him coping skills until he could figure it out.

I didn't baby him, and i didn't accept "no" and "I can't" for an answer.

However,I did push him then let him go home and read for 2 hours with out bugging him after said adventure. Or let him watch a movie with out anyone bugging him if he survived an entire day of errands with out complaint (or mimimal issues.)

I rewarded him when we'd do stuff for the desired behaviors and refused to give things to him just because he wanted it. If he wanted mcdonalds, he had to survive the part that had to come first. He learned to cope in order to get what he wanted, even if it was HARD. I also just had to be patient and deal with th emeltdowns and not let them control our life.

with other kids involved too, he just can't always be the center of our univerise, he's not the only person who matters, though he is one of the people in our family who matter, I just never made it all about him because it wasn't all about him every minute of every day, and he's never been allowed to think he controls us or our life, or our schedule with his behaviors.

There's pretty severe consequences for meltdowns in public, I've given him tools, communication and coping strategies, even if it's just saying, mom, I need to go to the bathroom for a few minutes to get away from the stimulation. i'm not unreasonable, but "not doing it" is not an option.

He's alot more functional then he would be if he'd been babied or catered too... and our life would be a lot messier and non functional.




Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)