My son, Viktor, is just over four and a half years old. While he has autism and suffers from communication delay and deficits in social interaction and understanding and emotional understanding, his mind is still able to come up with the same argument a normal four year old would draw upon when they don't want to take a nap.
He's always had sleep difficulties and has always been an early riser. Coming off daylight savings time last week has thrown his schedule into a bit of confusion. The actual time showing on a clock means nothing to him. If the sun is up, in his mind, it's time to wake up, even if the clock shows it's only 6AM. With his bed time being around 9 to 9:30 PM, and keeping in mind that putting him in his bed doesn't mean he goes to sleep right away, he isn't getting adequate sleep at night when he wakes up so early.
Because anyone who doesn't get enough sleep they get irritable and cranky late in the afternoon or early evening, to ensure Viktor gets enough sleep, I try to get him to nap during the day. Like any other four year, he fights it. Where a neuro-typical child would use the argument and language saying, "But it's not night time yet." m son Viktor came to the same conclusion but lacking the language skills to say this exactly, just told me, "Stars all gone." When I realized what he was trying to say, it made me laugh at cry at the same time. I laughed because it was too cute that he was using the typical argument to get out of sleeping, that it was still day time so wasn't time to sleep. I cried because it filled me with hope that the ability to understand such things and come to a normal four year old conclusion was within my son's grasp, even if he wasn't able to use the same language to tell me what was on his mind.
I love my son so much I can't express it in words. I am left feeling alone, isolated, frustrated and exhausted caring for him day in and day out with no break in the routine. The only time I don't have to spend time with and watch Viktor, is when he's asleep. Even then I still worry that he'll wake up before me and leave the house and get hurt or kid napped because he has no sense of danger. So even at night, my sleep is troubled with worry and fear for my son.
My only Viktor free time is when he is sleeping. I can't do dishes or laundry while he's sleeping because he has such sensitive hearing the sound if the dish washer would wake him up. There is also a quiet curfew in our apartments, no running the dish washer or washer/dryer after 10PM or before 7AM. This means the only time I am able to do these things is when Viktor is awake. There isn't anyone here to watch him for me while I'm doing these things and these are usually the times when he decides he's going to act out, screaming, banging and making a lot of noise. My partner works from home doing phone support and could lose his job if it's too loud here.
I find myself overwhelmed and in need of a break away from the stress and worry and frustration that is my current life. I could get a couple hours of respite care where someone else would watch Viktor for me, but I keep thinking, what would I do with that time? I could shower, do dishes, try to organize some things in the house and make it a little more bearable. I could take a nap and try to catch up on sleep I've been depriving myself of in an attempt to escape from the stress of my life during the only hours I am able to focus on something else completely, or I could just sit on my couch and stare at the wall. I don't have a car to go anywhere and I don't have funds to do anything. So I inevitably come around to the same conclusion each time I start thinking about respite care: I wouldn't do anything different then what I do now, I just would be able to do it without having to deal with Viktor at the same time. In my mind, it really doesn't sound like much of of break to me so I end up talking myself out of it.
Viktor needs his therapy, he needs to go to school, he needs me to be able to work with him at home also doing the techniques I'm being taught in the therapy sessions we attend, but I know myself well enough to know, I will start out strong and go at it full force and after a few months of unrelenting, constant working with Viktor either in our home or at therapy, I'll burn out. I can't allow that to happen and yet thinking about it, and all the years ahead of me caring for Viktor, doing the therapy, working with him in the home, I become overwhelmed and start to feel burnt out before I've even started anything.
I need to find a balance so I can give Viktor what he needs but not neglect my other responsibilities to the other members of my family and household, or to myself. Not neglecting myself has never been my strong suit. I push myself beyond my limit and end up a simpering puddle on the floor unable to continue. I can't allow that to happen because without me being there, Viktor has nobody else. I also have nobody I can lean on when I need support. I'm not sure how a person with no support structure can care for an autistic person for their lifetime. I can't count on my family, they have a hard enough time dealing with their own lives, not to mention they decided I wasn't worth their time when I disagreed with their assessment on how I'm living my own life.I don't really have any friends either that I can just call up and say come over I need a break, or I need someone to talk to, or I need help of any kind. I have a neighbor who has a 17 year old son with autism, but she goes to school full time during the day and her evenings are filled with studying and her weekends with her own son and his personal challenges so I don't feel I can dump on her because I am not the center of her world and I wouldn't expect to be. We spend time together, she takes me shopping when I need to go so I don't have to take the bus. She took Viktor for a couple of hours last Friday to give me some time off. I took a shower, did dishes and by the time I was able to start relaxing they came back and all the stress and worry came back.
I don't blame her, and I don't expect her to take him for hours at a time. He knows her and is comfortable with her. That means he will go with her, without me, and not suffer from the separation anxiety he normally gets when he's away from me with someone else he doesn't know or trust. It also means he will freely have meltdowns in her presence which is taxing for anyone.
I don't even know where I'm going with this entry other then trying to work out some things I've been struggling with the past few months and have thus far been unable to sort out and come up with a solution that won't harm anyone, including myself. I know I need to take care of my own needs, otherwise I won't be able to care for anyone else in the manner they need or deserve, but taking care of myself has never been my first priority and when I try to put my needs first I start feeling like I'm being selfish and should be focusing on someone else. Obviously I have some issues. It would be great if I had a friend or two that I could just call and ask, "Can you come over?" and they would be able to jump in there car and come and I could spend some time dumping on them, crying, relieving some of the anxiety I am feeling about my own fitness to care for Viktor. At this point, I'm just rambling, unable to come to a conclusion so I am just going to end this vent on this note: be careful what you commit yourself to, make sure you are really and truly up to the task. If you have any doubt, rethink your decision to take that path.
He's always had sleep difficulties and has always been an early riser. Coming off daylight savings time last week has thrown his schedule into a bit of confusion. The actual time showing on a clock means nothing to him. If the sun is up, in his mind, it's time to wake up, even if the clock shows it's only 6AM. With his bed time being around 9 to 9:30 PM, and keeping in mind that putting him in his bed doesn't mean he goes to sleep right away, he isn't getting adequate sleep at night when he wakes up so early.
Because anyone who doesn't get enough sleep they get irritable and cranky late in the afternoon or early evening, to ensure Viktor gets enough sleep, I try to get him to nap during the day. Like any other four year, he fights it. Where a neuro-typical child would use the argument and language saying, "But it's not night time yet." m son Viktor came to the same conclusion but lacking the language skills to say this exactly, just told me, "Stars all gone." When I realized what he was trying to say, it made me laugh at cry at the same time. I laughed because it was too cute that he was using the typical argument to get out of sleeping, that it was still day time so wasn't time to sleep. I cried because it filled me with hope that the ability to understand such things and come to a normal four year old conclusion was within my son's grasp, even if he wasn't able to use the same language to tell me what was on his mind.
I love my son so much I can't express it in words. I am left feeling alone, isolated, frustrated and exhausted caring for him day in and day out with no break in the routine. The only time I don't have to spend time with and watch Viktor, is when he's asleep. Even then I still worry that he'll wake up before me and leave the house and get hurt or kid napped because he has no sense of danger. So even at night, my sleep is troubled with worry and fear for my son.
My only Viktor free time is when he is sleeping. I can't do dishes or laundry while he's sleeping because he has such sensitive hearing the sound if the dish washer would wake him up. There is also a quiet curfew in our apartments, no running the dish washer or washer/dryer after 10PM or before 7AM. This means the only time I am able to do these things is when Viktor is awake. There isn't anyone here to watch him for me while I'm doing these things and these are usually the times when he decides he's going to act out, screaming, banging and making a lot of noise. My partner works from home doing phone support and could lose his job if it's too loud here.
I find myself overwhelmed and in need of a break away from the stress and worry and frustration that is my current life. I could get a couple hours of respite care where someone else would watch Viktor for me, but I keep thinking, what would I do with that time? I could shower, do dishes, try to organize some things in the house and make it a little more bearable. I could take a nap and try to catch up on sleep I've been depriving myself of in an attempt to escape from the stress of my life during the only hours I am able to focus on something else completely, or I could just sit on my couch and stare at the wall. I don't have a car to go anywhere and I don't have funds to do anything. So I inevitably come around to the same conclusion each time I start thinking about respite care: I wouldn't do anything different then what I do now, I just would be able to do it without having to deal with Viktor at the same time. In my mind, it really doesn't sound like much of of break to me so I end up talking myself out of it.
Viktor needs his therapy, he needs to go to school, he needs me to be able to work with him at home also doing the techniques I'm being taught in the therapy sessions we attend, but I know myself well enough to know, I will start out strong and go at it full force and after a few months of unrelenting, constant working with Viktor either in our home or at therapy, I'll burn out. I can't allow that to happen and yet thinking about it, and all the years ahead of me caring for Viktor, doing the therapy, working with him in the home, I become overwhelmed and start to feel burnt out before I've even started anything.
I need to find a balance so I can give Viktor what he needs but not neglect my other responsibilities to the other members of my family and household, or to myself. Not neglecting myself has never been my strong suit. I push myself beyond my limit and end up a simpering puddle on the floor unable to continue. I can't allow that to happen because without me being there, Viktor has nobody else. I also have nobody I can lean on when I need support. I'm not sure how a person with no support structure can care for an autistic person for their lifetime. I can't count on my family, they have a hard enough time dealing with their own lives, not to mention they decided I wasn't worth their time when I disagreed with their assessment on how I'm living my own life.I don't really have any friends either that I can just call up and say come over I need a break, or I need someone to talk to, or I need help of any kind. I have a neighbor who has a 17 year old son with autism, but she goes to school full time during the day and her evenings are filled with studying and her weekends with her own son and his personal challenges so I don't feel I can dump on her because I am not the center of her world and I wouldn't expect to be. We spend time together, she takes me shopping when I need to go so I don't have to take the bus. She took Viktor for a couple of hours last Friday to give me some time off. I took a shower, did dishes and by the time I was able to start relaxing they came back and all the stress and worry came back.
I don't blame her, and I don't expect her to take him for hours at a time. He knows her and is comfortable with her. That means he will go with her, without me, and not suffer from the separation anxiety he normally gets when he's away from me with someone else he doesn't know or trust. It also means he will freely have meltdowns in her presence which is taxing for anyone.
I don't even know where I'm going with this entry other then trying to work out some things I've been struggling with the past few months and have thus far been unable to sort out and come up with a solution that won't harm anyone, including myself. I know I need to take care of my own needs, otherwise I won't be able to care for anyone else in the manner they need or deserve, but taking care of myself has never been my first priority and when I try to put my needs first I start feeling like I'm being selfish and should be focusing on someone else. Obviously I have some issues. It would be great if I had a friend or two that I could just call and ask, "Can you come over?" and they would be able to jump in there car and come and I could spend some time dumping on them, crying, relieving some of the anxiety I am feeling about my own fitness to care for Viktor. At this point, I'm just rambling, unable to come to a conclusion so I am just going to end this vent on this note: be careful what you commit yourself to, make sure you are really and truly up to the task. If you have any doubt, rethink your decision to take that path.
