How can you write about being an Aspergers mom without addressing the issue of marriage...that is if you make it past diagnosis with your marriage still in tact. A lot of men...just can't deal with the amount of time and attention that we as mothers have to spend taking care of of the special needs child...and I have 2 of them. Via this blog and in my internet autism community, I've met so many moms who have 3 or 4 kids with unique needs, so who am I complain right?
Mothering a special needs child ultimately takes time away from time that I would otherwise spend with selfish endeavors, like taking care of own personal needs, having a semblance of a career, personal growth and even my own health. It definitely takes away from time spent with my spouse. After a full day of dealing with the boys, I am left feeling like, 'Hey...he is a grown-ass-man, he can take care of himself.'
Or can he?
"Is there any coffee?" Which means, "Can you bring me some coffee?"
Then there's "Honey, what am I supposed to eat for lunch?" he asks without even looking up from his computer, while tied to his phone on conference call after conference call, when he works at home during the day. Seriously, sometimes this man will go all day long without feeding himself. Not healthy...at all.
Or there's the late phone call from the office, "Is there anything for dinner?" To which, sometimes reply, "The kitchen is closed. We ate 2 hours ago."
Sometimes I wonder if I have the sign "Food Lady" tattooed on my forehead.
Lord...don't let the man get sick! Then, I definitely have another child on my hands.
As the vows say, "For better for worse" right? I did say that 18 years ago, who knew what it really meant?!
Lately, we are both so spent physically and emotionally from dealing with these boys, recovering from or avoiding meltdowns, refereeing the bickering and fighting. Taking them here, there and everywhere. There isn't much energy left to put into taking care of our marriage. We don't live in the most romantically, conducive setting with teens on the spectrum who knock quickly and burst through the bedroom door, and a mother-in-law in the house. We can hardly watch a movie together un-interuppted, much less anything else without disturbance. (And I thought it would get easier as they got older!)
My husband puts a great deal of energy into his career and our personal finances. That takes up a lot of his time. Sometimes, I think he sees to it personally, that his job takes up as much of his time as possible. He often travels for business. I think secretly, he LOVES these frequent get-aways. I find myself resenting his freedom to travel regularly, spending evenings out dining on the companies dime, socializing with peers or simply coming back to an empty, quiet hotel room, with a door that he closes and locks, with no threat of anyone bursting through it. Who wouldn't love that right?
Other times, I'm glad he's gone. It means one less person to take care of.
We have parenting style difference, to put it mildly. He thinks I am a push-over, a softy, when it comes to discipline. He believes that Red manipulates me on a regular basis, and that both boys take advantage of my kindness. He's right to a degree. I can admit that.
I feel like he doesn't get it. He doesn't completely understand their disability. He doesn't have the time or energy to do the kind of reading and research, to attend every school meeting, answer the phone calls from school, read blogs, research medications, talk to doctors, nurses and therapists about what is going on with our boys. He has the life experience of living with them, and his own experience of the way he was raised. But is that really enough to raise these boys most effectively? He gives these long round-about lectures. He uses that loud, abrasive, manly tone that sets them off and hurts their feelings. Of course, he does not see it this way.
He is famous for saying, "The world isn't going to give them any special treatment! They may as well get used to it!"
The other famous line is, "I'm a man! Not a woman! A father...not a mother! I will never be the same as you!" Well...that's for damn sure.
I know there is a reason why God gave children 2 parents, to hopefully balance each other out. I get that whole, "The hard cold world scenario." However, I want peace in my house right now...today and I am willing to do whatever it takes have it. Why constantly trigger them into full-meltdown to teach them a lesson about the cold-hard world?! I just want some freakin' peace around here. Too often I am left playing the referee between them. It's mentally exhausting and leaves me feeling frustrated and sometimes...resentful.
The way that I have been feeling lately is not conducive to a happy married life. If we're not careful, the whole thing can unravel. Fortunately, we are both in this for the long haul. My husband is not the type to bail on his responsibilities, and neither am I. Although I am sure that there are times when we both feel like it. I'm the first to admit I dream about having another life. A life of freedom and choice, where my time is my own. Where the only person I have to take care of is myself. I could live where I want to live, do what I want to do.
I can tell that he is frustrated too. Last week on Sunday afternoon, he disappeared for the entire day and night. He went in to the "office" to take care of some expense reports and some other "business." Problem is...he was gone from 1 p.m. until after 11 p.m. No phone call...no text to say, "I'm still alive." Nothing!
At first I just stewed and simmered, refusing to call him to see when he was coming home. Dinner time came and went. Helping with homework, refereeing, making sure showers were taken, medicine was dispensed...trying to ignore the hours passing, but starting to fume. By say, 11 p.m. I am livid! I mean how nice to be able to disappear for the entire day, while I wrangle your children right?
Part of me begins to worry. Did he fall over and have a heart attack at the office. No one is in the building. It's secured and locked. How would I know if he ever even made it there? The truth is I don't really know where he is or if he's been in an accident.
Finally, I send a text. "Are you still alive?" 15, 20 minutes pass...no response. Five minutes later, I think I here his car. A few minutes later, he moseys on up the stairs taking his time. He walks through the bedroom door without saying a word...as if this is acceptable! Oh hell no!
I light into him like a madwoman! He probably thought he had wandered into the wrong house. Who is this crazy woman cursing like a sailor? And what did she do with my wife?
How dare him have me worrying like that!
I mean...fine you need to disappear for a while. Don't we all?
Fine, you don't feel like talking to me. That's o.k. too!
But how much trouble would it be to send a freakin' text message,"still here @ the office."
The following day I receive flowers, a sincere apology and a beautiful card. The sentiment of the message is this, 'We need to take some time for us, away from all of the things that get us down. We need to re-charge our marriage and get back to the most important thing...our love."
We've all heard the analogy of a marriage being like a garden, you have to water it, get rid of the pests, pull out the weeds and make sure that your plants get plenty of sunlight and fertilzer. If you leave the garden unattended, your flowers will not blossom, and your plants will surely wither and die.
Soon we will be taking a short trip together. We will leave our worries and our children behind. Of course, I am worried about leaving them. But I keep telling myself...as long as they're still alive when I get home, that's all that matters. No, they may not be happy while I'm away. But they're not happy when I 'm here anyway.
We have to water our garden, to nourish our marriage and ultimately our family.
Mothering a special needs child ultimately takes time away from time that I would otherwise spend with selfish endeavors, like taking care of own personal needs, having a semblance of a career, personal growth and even my own health. It definitely takes away from time spent with my spouse. After a full day of dealing with the boys, I am left feeling like, 'Hey...he is a grown-ass-man, he can take care of himself.'
Or can he?
"Is there any coffee?" Which means, "Can you bring me some coffee?"
Then there's "Honey, what am I supposed to eat for lunch?" he asks without even looking up from his computer, while tied to his phone on conference call after conference call, when he works at home during the day. Seriously, sometimes this man will go all day long without feeding himself. Not healthy...at all.
Or there's the late phone call from the office, "Is there anything for dinner?" To which, sometimes reply, "The kitchen is closed. We ate 2 hours ago."
Sometimes I wonder if I have the sign "Food Lady" tattooed on my forehead.
Lord...don't let the man get sick! Then, I definitely have another child on my hands.
As the vows say, "For better for worse" right? I did say that 18 years ago, who knew what it really meant?!
Lately, we are both so spent physically and emotionally from dealing with these boys, recovering from or avoiding meltdowns, refereeing the bickering and fighting. Taking them here, there and everywhere. There isn't much energy left to put into taking care of our marriage. We don't live in the most romantically, conducive setting with teens on the spectrum who knock quickly and burst through the bedroom door, and a mother-in-law in the house. We can hardly watch a movie together un-interuppted, much less anything else without disturbance. (And I thought it would get easier as they got older!)
My husband puts a great deal of energy into his career and our personal finances. That takes up a lot of his time. Sometimes, I think he sees to it personally, that his job takes up as much of his time as possible. He often travels for business. I think secretly, he LOVES these frequent get-aways. I find myself resenting his freedom to travel regularly, spending evenings out dining on the companies dime, socializing with peers or simply coming back to an empty, quiet hotel room, with a door that he closes and locks, with no threat of anyone bursting through it. Who wouldn't love that right?
Other times, I'm glad he's gone. It means one less person to take care of.
We have parenting style difference, to put it mildly. He thinks I am a push-over, a softy, when it comes to discipline. He believes that Red manipulates me on a regular basis, and that both boys take advantage of my kindness. He's right to a degree. I can admit that.
I feel like he doesn't get it. He doesn't completely understand their disability. He doesn't have the time or energy to do the kind of reading and research, to attend every school meeting, answer the phone calls from school, read blogs, research medications, talk to doctors, nurses and therapists about what is going on with our boys. He has the life experience of living with them, and his own experience of the way he was raised. But is that really enough to raise these boys most effectively? He gives these long round-about lectures. He uses that loud, abrasive, manly tone that sets them off and hurts their feelings. Of course, he does not see it this way.
He is famous for saying, "The world isn't going to give them any special treatment! They may as well get used to it!"
The other famous line is, "I'm a man! Not a woman! A father...not a mother! I will never be the same as you!" Well...that's for damn sure.
I know there is a reason why God gave children 2 parents, to hopefully balance each other out. I get that whole, "The hard cold world scenario." However, I want peace in my house right now...today and I am willing to do whatever it takes have it. Why constantly trigger them into full-meltdown to teach them a lesson about the cold-hard world?! I just want some freakin' peace around here. Too often I am left playing the referee between them. It's mentally exhausting and leaves me feeling frustrated and sometimes...resentful.
The way that I have been feeling lately is not conducive to a happy married life. If we're not careful, the whole thing can unravel. Fortunately, we are both in this for the long haul. My husband is not the type to bail on his responsibilities, and neither am I. Although I am sure that there are times when we both feel like it. I'm the first to admit I dream about having another life. A life of freedom and choice, where my time is my own. Where the only person I have to take care of is myself. I could live where I want to live, do what I want to do.
I can tell that he is frustrated too. Last week on Sunday afternoon, he disappeared for the entire day and night. He went in to the "office" to take care of some expense reports and some other "business." Problem is...he was gone from 1 p.m. until after 11 p.m. No phone call...no text to say, "I'm still alive." Nothing!
At first I just stewed and simmered, refusing to call him to see when he was coming home. Dinner time came and went. Helping with homework, refereeing, making sure showers were taken, medicine was dispensed...trying to ignore the hours passing, but starting to fume. By say, 11 p.m. I am livid! I mean how nice to be able to disappear for the entire day, while I wrangle your children right?
Part of me begins to worry. Did he fall over and have a heart attack at the office. No one is in the building. It's secured and locked. How would I know if he ever even made it there? The truth is I don't really know where he is or if he's been in an accident.
Finally, I send a text. "Are you still alive?" 15, 20 minutes pass...no response. Five minutes later, I think I here his car. A few minutes later, he moseys on up the stairs taking his time. He walks through the bedroom door without saying a word...as if this is acceptable! Oh hell no!
I light into him like a madwoman! He probably thought he had wandered into the wrong house. Who is this crazy woman cursing like a sailor? And what did she do with my wife?
How dare him have me worrying like that!
I mean...fine you need to disappear for a while. Don't we all?
Fine, you don't feel like talking to me. That's o.k. too!
But how much trouble would it be to send a freakin' text message,"still here @ the office."
The following day I receive flowers, a sincere apology and a beautiful card. The sentiment of the message is this, 'We need to take some time for us, away from all of the things that get us down. We need to re-charge our marriage and get back to the most important thing...our love."
We've all heard the analogy of a marriage being like a garden, you have to water it, get rid of the pests, pull out the weeds and make sure that your plants get plenty of sunlight and fertilzer. If you leave the garden unattended, your flowers will not blossom, and your plants will surely wither and die.
Soon we will be taking a short trip together. We will leave our worries and our children behind. Of course, I am worried about leaving them. But I keep telling myself...as long as they're still alive when I get home, that's all that matters. No, they may not be happy while I'm away. But they're not happy when I 'm here anyway.
We have to water our garden, to nourish our marriage and ultimately our family.
Adelaide Dupont · 285 weeks ago
And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.
I especially appreciated points 5, 7 and 10.
And young women not settling or settling down yet is a good thing.
"It's never too late to live our dreams" - but it may be too early for some of them!
And 8 of course.
nicole · 243 weeks ago
Risa · 230 weeks ago
LAH · 221 weeks ago
Maira L. Coral · 216 weeks ago
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
Gavin Bollard · 209 weeks ago
Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.
I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.
She needed more care and she needed to be less alone. I'm so sorry that this has happened.
For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.
Kate was a beautiful soul and she will be sorely missed by all of us.
diyalabs6192603 11p · 192 weeks ago
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Spoil your cat · 122 weeks ago
Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.
The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
Duncan · 112 weeks ago