I'm at another one of those frustrating points where I just feel like I'm not the right mother for Liberty. Because, a Saint, I ain't. I wish I was all Mother Love and Pure Patience and Tolerance, but I guess everyone has their breaking point. Kind people will write to me and say that I just need a break, to get off by myself, to get a massage, etc. But, what I need the most is a change in perspective. Would that I could call Dr. Bombay (come on you remember from Bewitched?)
I'm a person who is really great at detail. It's why I'm good at my job. I pay attention to the fine points. I have the kind of energy some people might label Mouse Energy, which is the ability to see up close as opposed to Hawk Energy which is the ability to rise above and see the parts as the whole. I've said before that Lib is under the microscope like a lot of children who are undergoing treatment. Parents are always observing reactions to new supplements, lack of supplements, judging quality of poops, you name it, we're observing it.
But I'm too up close to Liberty most of the time. I don't have the ability to pull back and "put it all in perspective" like my mother used to say. This is where I need to lean on others to help me correct my vision. I'm sending out my SOS.
I do exercise gratitude, though. It's not that I cannot count my blessings. I am actually in the habit of that now. I don't lose sight of my blessings because it can always be worse.
I'm a person who is really great at detail. It's why I'm good at my job. I pay attention to the fine points. I have the kind of energy some people might label Mouse Energy, which is the ability to see up close as opposed to Hawk Energy which is the ability to rise above and see the parts as the whole. I've said before that Lib is under the microscope like a lot of children who are undergoing treatment. Parents are always observing reactions to new supplements, lack of supplements, judging quality of poops, you name it, we're observing it.
But I'm too up close to Liberty most of the time. I don't have the ability to pull back and "put it all in perspective" like my mother used to say. This is where I need to lean on others to help me correct my vision. I'm sending out my SOS.
I do exercise gratitude, though. It's not that I cannot count my blessings. I am actually in the habit of that now. I don't lose sight of my blessings because it can always be worse.
I just cannot seem to find a good feeling place regarding my son. I know that I have to do that in order to obtain peace.
The thing I am having trouble with is acceptance of what is, because I don't know what "what is" IS. Does that make sense? Sometimes I think Lib is progressing nicely and I am kind of in this steady state, and then other times, I look at him and I think, "Oh God, he's going to be six years old, he's been under a DAN doctor's care for almost a year and...he's not progressed very far." Of course, I am measuring progress by speech. I'm telling ya people, this is starting to really get to me. I want to talk to my son. I want to hear his voice. I want to know what he feels. I want to know him.
And, as you can see, I think these depressing thoughts and then I react to them as if they are real. I am not unconscious about this process. I see what's happening.
The thing I am having trouble with is acceptance of what is, because I don't know what "what is" IS. Does that make sense? Sometimes I think Lib is progressing nicely and I am kind of in this steady state, and then other times, I look at him and I think, "Oh God, he's going to be six years old, he's been under a DAN doctor's care for almost a year and...he's not progressed very far." Of course, I am measuring progress by speech. I'm telling ya people, this is starting to really get to me. I want to talk to my son. I want to hear his voice. I want to know what he feels. I want to know him.
And, as you can see, I think these depressing thoughts and then I react to them as if they are real. I am not unconscious about this process. I see what's happening.
Still, I cannot find that place of rest with What Is. Can I just order one of these?
At this writing, Liberty is in the kitchen eating his pretzels and making a kind of "whoop, whoop" noise. Prior to this he was eating his yogurt by himself which is a major accomplishment because he will even wipe his mouth with a napkin (wipe his nose with a Kleenex, too!) but then he can't resist mashing the yogurt that has glopped on the floor into the carpet and playing in it like he is a baby/toddler.
He came home from school and I knew he wanted to go watch Finding Nemo. It's his new favorite thing. He wants to watch it over and over again. I guess this is where I use the word "perseveration," or do I? Am I really obliged to use the lexicon of the autism diagnosis, really? Do I really give a crap about all of that anymore? My personal experience of Liberty has been turned into the lingo of the diagnosis. He "stims" and "perseverates" and has a "need for sameness" and doesn't know where his body is in space, and...OH GOD I'm drowning in the language of the disorder.
He came home from school and I knew he wanted to go watch Finding Nemo. It's his new favorite thing. He wants to watch it over and over again. I guess this is where I use the word "perseveration," or do I? Am I really obliged to use the lexicon of the autism diagnosis, really? Do I really give a crap about all of that anymore? My personal experience of Liberty has been turned into the lingo of the diagnosis. He "stims" and "perseverates" and has a "need for sameness" and doesn't know where his body is in space, and...OH GOD I'm drowning in the language of the disorder.
You know I was more at peace when Liberty was so much more mine - when he was not the property of the school system and the experts. So much mine.
I don't want to know the why anymore...(unless I find out he is having seizures after all and boom here's your medication and you're done - or was that a dream I had?)
Today, as I was driving in the car, I was thinking about this obsession with Nemo over the last weekend. My son loves the movie and I think it's one of the best animated films. It has no offensive soundtrack, and it's fun to have on because it is all underwater and mostly ocean scenes. I dig that, too. It's doubly fun for Lib because there happens to be a tv in our bedroom (not hooked up to cable, thankfully) that he can watch the movie on and he likes me to get in bed with him and hug him tight during all of the exciting and scary scenes. This is kind of cool - a new kind of sharing because he is looking intensely at my face and he is sharing emotion with me. ALL of that is great.
B U T ... as I stated before, I knew when he got off the bus, the first thing he wanted was for me to turn on the tv. I wanted him to go to the bathroom and sit on the potty. He can't talk, so he just gets intense and kind of holds me tight and makes a noise and a face that lets me know he is mad. I say no and tell him to go to the bathroom first, then we will put on the movie. He gets even more intense with me and that is when I just lose it and yell at him. He stops and looks at me with those big eyes and then I feel like the shrew of the year. The worst mother. But, he does go in the bathroom and he obeys me from then on. I don't strike him or anything. I just raise my voice but I'm at the point I want to scream bloody murder, do you know what I mean?
And, trust me I have screamed into pillows to God. Oh boy has God gotten an earful from me.
I'm SICK OF AUTISM. And, I do not consider anything about it to be "awe-some".
Sure, there are some children who are completely verbal with a diagnosis of autism and they will knock your socks off with their insights. That IS cool. But it is NOT where Lib is concerned. It's a constant heartache. And yes, I need to let go of that analogy because I get lots of pain in my chest.
These blogs that talk about encouraging neurodiversity and "leaving their kids alone" just piss me off. I think they are not still scraping poop off the walls. If they were, they might sing a different song. Autism ain't so beautiful then. I know in my heart of hearts this is mercury poisoning.
I thought when I had a DAN doctor, I'd feel better. But, the DAN is so busy, I don't get to talk to him much. When I do, it's just kind of a once over of the chart, and a few ideas to try...and another year goes by and my boy is still lost somewhere in it. [I even had a dream that we drove all the way up to New York to see the doctor and the doctor and the whole staff were smashed, just drunk as skunks. And I was so pissed! ]
The only hope that I can muster right now is that Liberty did get into an autism camp this summer. Not the sleep over kind, but a day school where he will be privileged to have ABA therapy all day long with one-on-one attention. We are having to do a fundraiser for the camp just so we could get him in because we could not afford the $4,000 it costs for each child to go. So many children made advances last year (for instance all of the children were potty trained after six weeks, some began speaking) that I was sorry we were not able to get him in last year when it was only $400. All of the kids that got in last year were automatically enrolled this year. We were on a waiting list.
Ah well, as another mom of a child with autism said, "What can you do? Life goes on..." I suppose that is the bottom line.
I feel the need for an I Love Lucy marathon coming on. Besides a couple of beers, it's the only thing that can help me now, I think!
Not to mention the love I get from fellow bloggers. I need you guys. Greatly.
4 comments:
Halfway through your post, I thought instantly of what you taught me: FEAR - Future Events Appearing Real. I know for me it's hard not to "worst case scenario" a situation in order to be prepared, whatever happens. And in doing so, I certainly don't make room in my thoughts for the positive possibilities I can't foresee because they aren't concrete at the time.
I send LOVE to you and Liberty. When does camp start?
I have been there. And yet not exactly. But I hear you and I support you.
All I can say.
Love.
I love the Hawk Energy versus Mouse Energy analogy, but I think you might be underestimating your energy by labeling it mouse (hawk eats mouse etc.). There must be another name for it that would increase your feeling that it is a gift. (I wish I had more attention to detail.) Or at least remember that a tiny mouse has the energy to scare a gigantic elephant.
Also don't feel guilty that you have to grieve for the loss of your plans and the child you know could be. Sometimes you have to embrace those feelings before you can move through them.
Honestly, we may not be exactly where you are, but all of us have yelled more than we should and have been guilty of not showing gratitude. Sometime I convince myself that the same energy that causes us to be impatient etc. is the same energy that our kids need to get better. If we deny one then we deny the other.
One hour at a time.
I want to be all cheery and bright side with you, but the fact of the matter is, where you are right now is HELL! I've been to Hell, too. Hell is hell, no matter how you slice it.
For me, I wish I'd just accepted that I was in Hell, and not tried so hard to pretend I wasn't. Now that it's passed, I have so much residual resentment, that's the fresh hell, trying to peel all that back and recover. Fully. It's a process, for sure, much easier some days than others!
Sending you love, love and more love.
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