All in the Family
We have 3 boys. Our 14yo has moderate autism, 11yo has severe autism with bipolar features, 6yo is our token Aspie with a lot of ADHD.
When everyone in the family has autism, sibling issues take on new flavors. Not only is there sibling rivalry, but when you don't read social cues you don't stop picking and inciting. And when your brother has severe autism, but because of your own autism you don't fully comprehend, it becomes ugly. You don't recognize danger cues. You incite danger without realizing, or because you have too much difficulty switching plans. That is mostly our Aspie. A whirling dervish. But endangering himself more than others.
Because you are not social, and you don't have the skills to be fully independent, there is no escaping the house of torture. There are 2 brothers who do things continuously to aggravate your own sensory issues. And invade your treasured personal space. Even if you have no comprehension of the personal space of others. And brothers continuously get into your stuff, which you never remember to put away. It gets even more interesting
When you are autistic, like us all, you would like your own agenda addressed, but it reaches new levels of need. But when your brother's needs exceed your own, the agenda changes to something unwanted and totally foreign.
Tonight Sam and I were discussing where we would like to live. We were out walking the dog, and I told him I would like to live off Main Street, because I hate the cars always going by. He said he would like to live on that country road also. Then he gave the peculiar jerky walk that tells me (even if he has yet to recognize it) that a spasm of extreme emotion was going through him. "Nathan! I would like to move to my friend's house withOUT Nathan." Ok.
We talked about it. "Nathan is always CHOOSING to be out of control." No, no he's not. He is extremely upset by his own lack of control and this worsens everything.
Tonight Sam is full of all these different plans that would allow us to move out of the house and still allow Nathan to be cared for. His dad nixed the one where HE got all the responsibility of living with him.
And I do understand. I would like to get away from Nathan too many times. I know it hard for Sam. He has only some understanding of what severe autism is and almost none of bipolar. He is autistic, and he doesn't rage. He doesn't bite or break things. He doesn't keep us from doing stuff he wants to do (ok Sam keeps us from doing stuff *I* want to do, but he doesn't see that because of his limited, self-focused world view.)
Isaac just knows that he gets walloped sometimes without warning (at least without him knowing it was going to happen, even if his dad and I had warned him. His stuff gets messed with, Legos taken apart, playdoh eaten, toys broken.
There are reams written about helping typical siblings cope (get them involved in clubs, send them to special friends houses for sleepovers.) And some of it works. I do my best to give each boy special time while working a full-time job and also doing things as a family. But there are no invitations to sleepovers. There is no club where Sam doesn't need some support, usually at night from a parent.
There is little written about families with multiple disabilities. And even less about how to help each child develop without feeling intense guilt over how your efforts seem so insignificant.
When talking to the professionals who work with our family, we mostly get "We really admire you." Yeah? I would like "What has worked for other families is this book of guidance." I need a roadmap. Instead I just keep feeling my way in the dark.
When everyone in the family has autism, sibling issues take on new flavors. Not only is there sibling rivalry, but when you don't read social cues you don't stop picking and inciting. And when your brother has severe autism, but because of your own autism you don't fully comprehend, it becomes ugly. You don't recognize danger cues. You incite danger without realizing, or because you have too much difficulty switching plans. That is mostly our Aspie. A whirling dervish. But endangering himself more than others.
Because you are not social, and you don't have the skills to be fully independent, there is no escaping the house of torture. There are 2 brothers who do things continuously to aggravate your own sensory issues. And invade your treasured personal space. Even if you have no comprehension of the personal space of others. And brothers continuously get into your stuff, which you never remember to put away. It gets even more interesting
When you are autistic, like us all, you would like your own agenda addressed, but it reaches new levels of need. But when your brother's needs exceed your own, the agenda changes to something unwanted and totally foreign.
Tonight Sam and I were discussing where we would like to live. We were out walking the dog, and I told him I would like to live off Main Street, because I hate the cars always going by. He said he would like to live on that country road also. Then he gave the peculiar jerky walk that tells me (even if he has yet to recognize it) that a spasm of extreme emotion was going through him. "Nathan! I would like to move to my friend's house withOUT Nathan." Ok.
We talked about it. "Nathan is always CHOOSING to be out of control." No, no he's not. He is extremely upset by his own lack of control and this worsens everything.
Tonight Sam is full of all these different plans that would allow us to move out of the house and still allow Nathan to be cared for. His dad nixed the one where HE got all the responsibility of living with him.
And I do understand. I would like to get away from Nathan too many times. I know it hard for Sam. He has only some understanding of what severe autism is and almost none of bipolar. He is autistic, and he doesn't rage. He doesn't bite or break things. He doesn't keep us from doing stuff he wants to do (ok Sam keeps us from doing stuff *I* want to do, but he doesn't see that because of his limited, self-focused world view.)
Isaac just knows that he gets walloped sometimes without warning (at least without him knowing it was going to happen, even if his dad and I had warned him. His stuff gets messed with, Legos taken apart, playdoh eaten, toys broken.
There are reams written about helping typical siblings cope (get them involved in clubs, send them to special friends houses for sleepovers.) And some of it works. I do my best to give each boy special time while working a full-time job and also doing things as a family. But there are no invitations to sleepovers. There is no club where Sam doesn't need some support, usually at night from a parent.
There is little written about families with multiple disabilities. And even less about how to help each child develop without feeling intense guilt over how your efforts seem so insignificant.
When talking to the professionals who work with our family, we mostly get "We really admire you." Yeah? I would like "What has worked for other families is this book of guidance." I need a roadmap. Instead I just keep feeling my way in the dark.
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