So my son has autism. He got the educational label last June and the medical diagnosis on Tuesday (May 31). So here's the rest of the story. I'm a single mom, I have a 'partner' meaning someone I live with and share a bed with. His 15 year old daughter lives with us also and she essentially has free reign to do whatever she wants when she wants as long as she calls and checks in with dad occasionally and gets her homework done. She's rarely here, that might change if she had her own room, but I doubt it. I don't work since I got fired from my job in October and job market is pretty slim for most people let alone someone who has no formal education including a high school diploma.
My partner was diagnosed about 6 months ago with PTSD, anxiety and Schizotypal Personality Disorder (a milder form of schizophrenia) and has difficulty leaving the bedroom, let alone walking outside the apartment to go somewhere people might be. Even the thought of talking on the phone to someone he doesn't know can cause anxiety induced pain that travels through his body in waves and completely debilitates him to the point he can only lay down in bed and wait for it to pass, which can sometimes take hours.
With my son's autism diagnosis, this means extensive appointments for therapy, visits to the doctor and other specialists that will need to happen several days each week. That being the case, my partner won't be able to take him to these appointments. That leaves it on me to be available to take him which takes me out of the job market even if there was a job I could find. I don't have a car so have to use public transportation to get anywhere. Most locations we'd need to go to are at least two bus transfers and at least one hour of travel or waiting time. If the appointment takes two or three hours, then we are looking at an all day venture which would be impossible for me to do if I was working full time to support my household as needed (we're talking, rent, food, bills and basic necessities like soap, shampoo, toilet paper, bus tickets, diapers) and not allowing for anything extra or fun (like clothes or movies) because we aren't able to justify that expense. I can't be there to take my son to his appointments and work with him at home during the day, as well as work full time. Taking several days off work each week to be able to take my son to his appointments wouldn't be full time work, even if I had unlimited paid time off which most companies don't give. I could work grave yard or swing shift, but then I'd have to wonder when I would sleep or spend time with my son? My son already gets SSI disability which isn't enough to even cover rent, let alone any of the other expenses we have. We are living off food stamps which thankfully allow us to eat. My son is four and still in diapers which are a fairly major expense (we spend more on diapers and baby wipes then we do on toilet paper, shampoo and shower soap combined).
I have no friends that aren't cyber friends and my family pretty much gave me up as a bad job a few months after my son was born. Friends to turn to for support? Non existent. Family to help out and provide assistance and support? That's a laugh, they didn't help or support me when we were talking unless constant criticism and put downs is considered help and support. My family couldn't add anything positive to my life so I had to sever contact, which they were all too happy to agree to. I'm apparently the black sheep of the family because I have a mind of my own and my own idea of what makes me happy and it isn't following the same things they do (I've seen their lives and I wouldn't call what they have happiness but misery). I got tired of them telling me what was wrong with my life and trying to tell me I'm stupid for living the way I do. What's so wrong with it anyway if I'm happy and content, for the most part? Obviously I didn't plan on having autism be part of my life, but then who does? You would think, since I am happier now then I ever was before when trying to live the way I'd been told all my life I should in order to gain happiness, that my family would be happy for me. But no, since I'm happy, and obviously they aren't, they need to try and pull me down to their level of misery because misery loves company and who better to share that misery then your siblings? But I don't want to spend the rest of my life miserable, I want to be happy, I like being happy so I had to politely decline to take part in their cycle of judgment, bad attitude and hearing all the time what was wrong with me and my life. Last time I checked it was my life and, like it or not, if it works for me, that's all that should matter to people who are supposed to care about me.
Anyway, went off on a tangent there a bit, I still obviously have some bitter feelings I need to overcome. I miss my family and I do love them, but I don't want them to be telling me what's wrong with me anymore. I don't want them putting me down and making me feel bad. All that does is lead a person to resent the company of the people they spend time with. I don't think I'm unique in feeling this way, it's just a shame when it's family because even though we don't speak, there's still that blood connection that will always be there. It's a shame for them because they are missing out on being a part of the life of my adorable, uniquely gifted and challenging son and sharing his accomplishments and progress with him and the pain of living with autism. Obviously I don't wish pain on them, although they might disagree with that, but sharing grief and pain makes it easier to handle and cope with. But my pain isn't their pain because autism doesn't touch their lives.
So what can a person do when life is such a struggle and there are times when a person wishes life would end and the struggle would be over? Nothing. Continue on. Live day to day and sometimes hour to hour or minute to minute. Rejoice in the days that pass without a meltdown and food that is given is eaten without a fight. Take pride in the progress you see your child make even though other children his age can dress themselves, go pee pee and poo poo in the potty, know what their favorite food is and can tell you or even have the ability to have a conversation or tell you a story or sit still to read a book together rather then just watch the pages turn because they like the way it looks. Learn to cherish each hug and kiss, even if you have to ask for it and they are only given when the child feels like doing it. Be patient when you call his name or ask a question knowing eventually it will get there and he will give a response and we'll be able to move on to the next task at hand. Try to block out the movies that he wants to watch over and over and over, all day, every day for weeks on end until you just can't take it anymore. Hope that some day you'll find someone you can talk to, who will relate to you, who doesn't mind coming for a visit because you can't get to them for various reasons. Try not to dwell on how lonely you feel, how isolated you are and how some people will give you dirty looks or impatient derisive snorts when your son loses it on the bus or in the grocery store or even while you're crossing the street (because someone felt the need to lay on their horn at someone who cut them off and the sound is too much for your child). I've often contemplated getting a couple sheets of poster board, making one of those sandwich posters that people wear that says, "My son has autism. He may scream, yell, hit me or do other strange things. Please be patient and DON'T try to tell me I need to discipline him more." If I wear that every time I go outside, maybe then people would begin to understand. Maybe people are just so intolerant that they won't care and say I should stay home if I can't control my child. To those people, who have been many, all I can think to say is you try living one day with a child with autism and see if you do any better and giving them the middle finger. Spankings? Yeah, right! A child with autism isn't phased by discipline like that. In my son's case, he either laughs or he starts to hit himself. All I can do is try to calm him down. If we are grocery shopping I can't do what the 'experts' suggest and leave the store and go shopping on another day. That is money I can't afford to waste on a bus ticket. When we go shopping, I have to get it done, even if my son doesn't want to cooperate because there's too much noise and too many people.
So this is the life of a person with a child that has autism. No freedom to do what you want. Inability to look toward a future and plan. Great consideration must be made days, weeks or months in advance, and telling your child what is happening ahead of time so he's ready for it when it comes, or at least as ready as he can be. I have no control over the jerk who decides he's going to talk on his cell phone really loudly, or the teenage girls who keep laughing really loud, nor can I control the people who feel they need to correct me on my child rearing abilities every time they see me. I can't make plans to go out on the weekends. For me there is no weekend. It's just one day the same after the other with the exception of maybe going somewhere on the bus but it's generally something that is needed rather then an outing meant for fun.
I miss being around adults, playing pool, being able to have people over who doesn't mind toys in little lines or circles all over the house that have to be left where they are so my son doesn't have a meltdown. We don't clean up toys because if they were moved from where he puts them, it's like a part of his world has ended and he won't be calmed until he can put them back where he needs them to be. I haven't even mentioned sleep deprivation because my son doesn't go to sleep right away when I put him to bed and if I didn't stay up to make sure he falls asleep, there's a constant worry about him walking out the front door to go and chase down the spinning tires on the cars that drive along the freeway. Not to mention if the noise level in the morning is too high when my partner's daughter is getting read for school, my son will wake with her and be awake from that point on. That happens as early as 5AM, sometimes 6, if I'm lucky he'll sleep until 8AM. I never get to sleep until noon or even 10AM, so even if I could afford to go out for fun, I wouldn't be able to because I wouldn't be able to function the next day. I don't even want to think what kind of trauma it's going to cause him when and if we are able to move. Everything will be different then and it will take several days, maybe even weeks or months to get everything unpacked and put away once we do move.
This is why I do day by day or hour by hour. Anything else is just too much to think about because I start to panic because I don't know if I can do that and can't make any plans for it in case I can't. Would you like to trade places with me? My guess is you wouldn't.
My partner was diagnosed about 6 months ago with PTSD, anxiety and Schizotypal Personality Disorder (a milder form of schizophrenia) and has difficulty leaving the bedroom, let alone walking outside the apartment to go somewhere people might be. Even the thought of talking on the phone to someone he doesn't know can cause anxiety induced pain that travels through his body in waves and completely debilitates him to the point he can only lay down in bed and wait for it to pass, which can sometimes take hours.
With my son's autism diagnosis, this means extensive appointments for therapy, visits to the doctor and other specialists that will need to happen several days each week. That being the case, my partner won't be able to take him to these appointments. That leaves it on me to be available to take him which takes me out of the job market even if there was a job I could find. I don't have a car so have to use public transportation to get anywhere. Most locations we'd need to go to are at least two bus transfers and at least one hour of travel or waiting time. If the appointment takes two or three hours, then we are looking at an all day venture which would be impossible for me to do if I was working full time to support my household as needed (we're talking, rent, food, bills and basic necessities like soap, shampoo, toilet paper, bus tickets, diapers) and not allowing for anything extra or fun (like clothes or movies) because we aren't able to justify that expense. I can't be there to take my son to his appointments and work with him at home during the day, as well as work full time. Taking several days off work each week to be able to take my son to his appointments wouldn't be full time work, even if I had unlimited paid time off which most companies don't give. I could work grave yard or swing shift, but then I'd have to wonder when I would sleep or spend time with my son? My son already gets SSI disability which isn't enough to even cover rent, let alone any of the other expenses we have. We are living off food stamps which thankfully allow us to eat. My son is four and still in diapers which are a fairly major expense (we spend more on diapers and baby wipes then we do on toilet paper, shampoo and shower soap combined).
I have no friends that aren't cyber friends and my family pretty much gave me up as a bad job a few months after my son was born. Friends to turn to for support? Non existent. Family to help out and provide assistance and support? That's a laugh, they didn't help or support me when we were talking unless constant criticism and put downs is considered help and support. My family couldn't add anything positive to my life so I had to sever contact, which they were all too happy to agree to. I'm apparently the black sheep of the family because I have a mind of my own and my own idea of what makes me happy and it isn't following the same things they do (I've seen their lives and I wouldn't call what they have happiness but misery). I got tired of them telling me what was wrong with my life and trying to tell me I'm stupid for living the way I do. What's so wrong with it anyway if I'm happy and content, for the most part? Obviously I didn't plan on having autism be part of my life, but then who does? You would think, since I am happier now then I ever was before when trying to live the way I'd been told all my life I should in order to gain happiness, that my family would be happy for me. But no, since I'm happy, and obviously they aren't, they need to try and pull me down to their level of misery because misery loves company and who better to share that misery then your siblings? But I don't want to spend the rest of my life miserable, I want to be happy, I like being happy so I had to politely decline to take part in their cycle of judgment, bad attitude and hearing all the time what was wrong with me and my life. Last time I checked it was my life and, like it or not, if it works for me, that's all that should matter to people who are supposed to care about me.
Anyway, went off on a tangent there a bit, I still obviously have some bitter feelings I need to overcome. I miss my family and I do love them, but I don't want them to be telling me what's wrong with me anymore. I don't want them putting me down and making me feel bad. All that does is lead a person to resent the company of the people they spend time with. I don't think I'm unique in feeling this way, it's just a shame when it's family because even though we don't speak, there's still that blood connection that will always be there. It's a shame for them because they are missing out on being a part of the life of my adorable, uniquely gifted and challenging son and sharing his accomplishments and progress with him and the pain of living with autism. Obviously I don't wish pain on them, although they might disagree with that, but sharing grief and pain makes it easier to handle and cope with. But my pain isn't their pain because autism doesn't touch their lives.
So what can a person do when life is such a struggle and there are times when a person wishes life would end and the struggle would be over? Nothing. Continue on. Live day to day and sometimes hour to hour or minute to minute. Rejoice in the days that pass without a meltdown and food that is given is eaten without a fight. Take pride in the progress you see your child make even though other children his age can dress themselves, go pee pee and poo poo in the potty, know what their favorite food is and can tell you or even have the ability to have a conversation or tell you a story or sit still to read a book together rather then just watch the pages turn because they like the way it looks. Learn to cherish each hug and kiss, even if you have to ask for it and they are only given when the child feels like doing it. Be patient when you call his name or ask a question knowing eventually it will get there and he will give a response and we'll be able to move on to the next task at hand. Try to block out the movies that he wants to watch over and over and over, all day, every day for weeks on end until you just can't take it anymore. Hope that some day you'll find someone you can talk to, who will relate to you, who doesn't mind coming for a visit because you can't get to them for various reasons. Try not to dwell on how lonely you feel, how isolated you are and how some people will give you dirty looks or impatient derisive snorts when your son loses it on the bus or in the grocery store or even while you're crossing the street (because someone felt the need to lay on their horn at someone who cut them off and the sound is too much for your child). I've often contemplated getting a couple sheets of poster board, making one of those sandwich posters that people wear that says, "My son has autism. He may scream, yell, hit me or do other strange things. Please be patient and DON'T try to tell me I need to discipline him more." If I wear that every time I go outside, maybe then people would begin to understand. Maybe people are just so intolerant that they won't care and say I should stay home if I can't control my child. To those people, who have been many, all I can think to say is you try living one day with a child with autism and see if you do any better and giving them the middle finger. Spankings? Yeah, right! A child with autism isn't phased by discipline like that. In my son's case, he either laughs or he starts to hit himself. All I can do is try to calm him down. If we are grocery shopping I can't do what the 'experts' suggest and leave the store and go shopping on another day. That is money I can't afford to waste on a bus ticket. When we go shopping, I have to get it done, even if my son doesn't want to cooperate because there's too much noise and too many people.
So this is the life of a person with a child that has autism. No freedom to do what you want. Inability to look toward a future and plan. Great consideration must be made days, weeks or months in advance, and telling your child what is happening ahead of time so he's ready for it when it comes, or at least as ready as he can be. I have no control over the jerk who decides he's going to talk on his cell phone really loudly, or the teenage girls who keep laughing really loud, nor can I control the people who feel they need to correct me on my child rearing abilities every time they see me. I can't make plans to go out on the weekends. For me there is no weekend. It's just one day the same after the other with the exception of maybe going somewhere on the bus but it's generally something that is needed rather then an outing meant for fun.
I miss being around adults, playing pool, being able to have people over who doesn't mind toys in little lines or circles all over the house that have to be left where they are so my son doesn't have a meltdown. We don't clean up toys because if they were moved from where he puts them, it's like a part of his world has ended and he won't be calmed until he can put them back where he needs them to be. I haven't even mentioned sleep deprivation because my son doesn't go to sleep right away when I put him to bed and if I didn't stay up to make sure he falls asleep, there's a constant worry about him walking out the front door to go and chase down the spinning tires on the cars that drive along the freeway. Not to mention if the noise level in the morning is too high when my partner's daughter is getting read for school, my son will wake with her and be awake from that point on. That happens as early as 5AM, sometimes 6, if I'm lucky he'll sleep until 8AM. I never get to sleep until noon or even 10AM, so even if I could afford to go out for fun, I wouldn't be able to because I wouldn't be able to function the next day. I don't even want to think what kind of trauma it's going to cause him when and if we are able to move. Everything will be different then and it will take several days, maybe even weeks or months to get everything unpacked and put away once we do move.
This is why I do day by day or hour by hour. Anything else is just too much to think about because I start to panic because I don't know if I can do that and can't make any plans for it in case I can't. Would you like to trade places with me? My guess is you wouldn't.
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