I have an awesome husband. He is an excellent provider and I know that he loves me and our children with all of his heart. Just last week, he took a day off and spent it with me. We went to lunch, followed by a leisurely walk, passed by Tiffany, where I coaxed him to going in to "just look" and I came out with a brand new necklace. I indulged him afterward by going to a bloody movie, full of violence, which is totally not my cup of tea. But that's what you do for the man you love. A few months ago, he totally indulged me by allowing my mom to move in with us, which involves a whole other level of sacrifice. So far, it's been more of a blessing than anything else.
When it comes to raising our Asperger's children however, I often feel like I'm on my own --like I'm the only one who gets it. My husband has this "old school", traditional mentality. But these are not traditional, atypical children. He sees many of their ASD behaviors as a personal affront to him and/or the rest of the world. Thus, he wants to discipline them as such, weather or not it works to change any behaviors and often despite the fact that it usually makes matters worse. He's a guy -so when he sees my son being aggressive, not listening and driving me batty, he wants to step in even more aggressively than my son is behaving, in order to let him know exactly who is the alpha male in the house. His aggression makes the sons aggression worse. It certainly doesn't teach him anything. I understand the whole I will protect my family 'by any means neccessary' mentality. However what the aspie teen and preteen needs is balance and calm when they are out of control. Yelling or litterally putting them into a corner, will not get them to buy anything that your selling, much less to absorb it into their psyche. Instead they begin to resent and loose respect for you.
That's all well and good as far as hubby is concerned. The problem comes in when I want to leave them with dad so that I can have a reprieve, but they want nothing to do with him because, "he's mean". And that's o.k., I leave them anyway, when I really need a break. However, that makes my homecoming more stressful. It can also mean dozens of phone calls while I'm away. I am actively learning how to ignore these calls or turn the phone off. It's a work in progress...just like the rest of my life.
Granted --he works a full-time, very demanding job. On top of that, he is a perfectionist, work-aholic. He gives 150% to his job and he doesn't have a whole lot left over for anything else. I am a full-time mother. The kids are my job. I spend my days, reading and researching Aspergers, taking them to therapists, dealing with teachers, school-psychologists and counselors -advocating for them to have their needs met in the educational setting, and trying to figure out the best way to parent them. NO ONE else does that. Yet, many people want to have a say on how to discipline them. That would include of course, their father, my mother who now lives with us, and any relative whom they spend time with.
Yesterday hubby had the day off and son had an appointment scheduled with his therapist. Did hubby get up in time to go to said appointment? NO! Why did I want him to attend, so that we could try to get somewhere on the same page when it comes to dealing with him --so that he could perhaps understand why he does some of the things he does to irritate and annoy us. When I try to tell hubby anything with regards to what I've read or what professionals say, he thinks I'm just being an overprotective, coddling mother. It couldn't be that I have any expert knowledge based on what I deal with everyday. "When they go out into the real world -nobody's gonna give a shit that they have Aspergers. I'm trying to prepare them for reality." That's a valid thought process. But does it help us have peace in our house?
Now we have Nana living with us, who is seriously "old school" and bless her heart, she tries to "get it" but she sees some of their behaviors as just plain, rude, obnoxious and annoying. They are just that on the surface, but their are underlying reasons why some things just are. She wants to protect her child who is being driven to the nut house and guess who's driving.
I love them with everything within me -and even I loose my patience at times. I am human. I just find it hard to listen to the advice of those who have not been educated to understand Aspergers. I guess that's another job for me -to try to educate them along with the rest of the world.
Not the expert mom with all the answers...the mom who can't stop looking for them.
Tuesday, March 16, 2010
Am I In this Alone?
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Comments by IntenseDebate
Posting anonymously.
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.
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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