Here lately I have been struggling with Beans, and his increasingly aggressive behavior. I don't care as much about about the aggression, or the destruction of my home as much as I care that he seems quite unhappy. I have spoken about it some on my Inner Aspie page, and more on my personal FB page. I tend to keep quite a lot of these struggles to myself, as I know the inevitable wall of advice is bound to come along with anything I post. I don't mind advice, and sometimes welcome it, but in the case of Beans it seems he has a different kind of autism than almost anyone else I have ever met, online, or off. Autism Daddy is probably one of the very few examples I have found that somewhat matched up with my Beans. Though, his son, and ideas on dealing with things differ from mine it is a close approximation.
Last year, for Christmas one of Beans paras took a bunch of photos of his classroom, and put them on a special slideshow/video dvd for the parents. Beans is in a classroom with other kids who are severely affected by autism, as well. He is by far the most delayed. I don't know that I noticed as much until popping that dvd in. I watched the other 2 kids in his class participate in activities while Beans just ran around in the background. Don't get me wrong, the school (usually) is very good at including him in every activity they can. The thing is, he doesn't have the skills to be involved in most of what the rest are doing. In P.E. the other 2 try to mimic what the rest of the 3rd grade class is doing, my son is running around playing tickles with the para. He will play tickles and peek-a-boo all day long. It isn't wrong, and it is engaging socially at his level of ability. I don't have an issue with it, but he is quite delayed in development, but yet his body is growing. His mind is beginning to get flooded with the hormones of adolescence, which delayed or not makes anyone moody, and obstinate.
He is still perfectly content to play with his baby toys. I think this is in part because sensory wise this is where he is. He loves the crinkle books, and the light up mobiles. I also think that he is limited somewhat in his ability to process the actions to do more complex tasks, like use the computer, or play with legos, though most of those things he shows no interest in doing anyway. He wanders through the house emptying every shelf, and drawer looking for fun things to tap on (his stim of choice) or eat due to pica. For this reason I have lots of gates and other measures to keep him contained. I feel bad about that, but if I didn't do it he would be very unsafe. I would love to allow him to be in rooms that I go in and out of, like the kitchen or laundry room, for example, but if I let him in there he never wants to leave, as well as he wants to dig through everything in that room. Enter in the new behavior he is having. If he even thinks that I don't want him to do something, he totally wants to do it. If he gets past gates, and people, and slips outside in the pouring rain he will climb on the trampoline where you can't reach him easily, and refuse to come in. I will be stuck out in the rain until he decides he is ready to come in. This is actually pretty typical behavior for an almost 10 yo. He is letting me know he owns his body, and he is asserting his right to do what he wants. Totally normal, even if the way it is being manifested isn't so much. However, much of the time the things he wants to do is off limits for a reason. I definitely never ever sit around trying to find the easiest way of dealing with him. I try to find the best way in which he can be safe, even if it means more work for me. My job is to care for him, and make sacrifices for him, not the other way around. And, let me tell you a huge chuck of my time is waiting him out until he wants to move from places, or things, even if it's in the pouring rain, or supper is burning.
His meltdowns have increased to the point that I feel meds may be needed. The slightest hint at frustration and his mind just cannot process it. It turns into raging at the drop of a hat. I have tried all else that I can think of, which is a lot considering how much I know about autism, and positive behavior supports. He has become aware that there are things he wants to do, rather than just being completely passive. He has plans, and he can't tolerate those plans being impeded in any way, even if those plans are not safe in any kind of way, or even feasible. Sometimes, he wants to eat junk food, and go swimming all day. That can't be an all the time activity, but I can tell from how he is behaving (he has very little expressive, or receptive communication at all, but behavior is communication) what he wants. Just recently he has begun to grab me by the hand to lead me to things, or push me around to what he wants. This was an exciting new thing, but quickly lead to realize how frustrated he can get when the desired activity cannot be one in which I can allow.
Aggression is my concern now. The slightest frustration leads him to a rage filled fit that I am not big enough to contain. He is outgrowing me. As soon as he gets even a little upset, he starts bashing his head into everything near him, and punching everything. He has a permanent (it seems) bruise on this nose and forehead from this. He hits himself, and breaks everything within reach. This is particularly embarrassing at the store. He can take an entire aisle out in seconds. Anyone who intervenes gets beat up. He is in constant whirlwind of motion. Always looking for things to get into. I have poison control stickers in my kitchen for the times he gets past my gates, and locks. This happens as he learns. He isn't much of a climber, yet, but he is learning. He recently learned that he can push end tables, and chairs around to climb on to reach shelves.
In search for answers, I googled several different terms about severe autism, intellectual disability, and puberty. I could not find many answers on most of those searches. One of them, just a plain search for 'severe autism' brought me to tears. On page one, the second one down, there is a video of a man literally inducing a meltdown in his son as he speaks about his child as if his child cannot hear him. I am not going to share it, because it pisses me the f*ck off. He doesn't need more views. He needs something I am not going to say here, because I don't want you to think I am a violent person. I cannot understand why in the world you would treat your child that way, and why other people would think that it is okay.
Worse than that, underneath where it has other popular suggestions there is the obviously very popular search phrase 'severe autism life expectancy' . Seriously. Does that creep anyone else out? We need more education, and more help for autistics like Beans and their families. That is why I am making this blog entry. There are a lot of places to get support for someone like Bubby. I have met very few people with kids like Beans. I know they're out there. I have a feeling that they shut down from hearing all of the dismissals from others that think/say phrases like:
"Why don't you try _____. Worked for my son."- This one usually involves about a ton of skills my son hasn't even begun to master yet, and possibly never will. But if I say that, I get.....
"I think you're being too negative." Yes, if I try to realistically explain that my son cannot use a pencil, understand how to use a computer mouse, or follow almost any verbal instructions, ect... I get....
"Presume competence" Now, I would never do what I just detailed to you above, which is assume my son can't tell that I am putting him down in front of everyone like he was some kind of science experiment. However, being realistic about where he is, and what he can do is not presuming he is incompetent. It is meeting him where he is at. But if I say that I get,
"You need more support/therapy/to work with him more" Yes, because if my child is more disabled than some people think he should be, it means that somewhere someone is failing him. If I try to explain that I let him be who he is without pushing him into being something that I want, no matter how unatrural it is for him I get...
"You're giving up. Not trying hard enough/ bad mother" Now we really have come full circle. Judgment is rendered on my abilities, and I suspect this in part of why I am finding it difficult to find others in the same boat. I think other parents (especially moms) get their feelings hurt by these sorts of people way faster than me. Sometimes, it hurts my feelings when I hear these things, and it always frustrates me, but aspie me doesn't care enough about what others think of me enough to influence me into silence. Logically, I know that I am not perfect, but I am honest enough with myself to know that I am doing a pretty decent job with all of my kids. I need to help my son, and I can't let my emotions get in the way of doing that, so I don't.
So, this is in part my feeble attempt to putting something out there about severe autism, combined with a cognitive delay going into puberty. I don't have the answers, but I am on a long journey of finding them. One in which I will not give up. I hope that another parent might find these words and be comforted,. even if nothing else to know they're aren't alone. Stay tuned for more if you'd like, and follow me on Inner Aspie, or Here for Twitter, or even email me at the address below if you have anything you'd like to say privately. I always answer emails, even if it takes me a couple wks! I want to facilitate the connection between us parents with severely autistic children, and have these conversations that seem too few and far between.