Friday, April 27, 2012

Milestones

We are not planning on attending/participating in our daughter's 8th grade graduation next month. Crowds, noise and waiting -- three things Diana does not care for. On the one hand, it's an opportunity to participate in an event with her peers. On the other, it's a situation that could spell several days of overloaded kid. It's a milestone that should be celebrated, but by abstaining, we're respecting her limitations. If we go, it's for us; if we don't, it's for her. Who's more important?

In the grand scheme of things, missing it isn't much of a big, right? In our old (smaller) school district, there was kindergarten graduation and graduation from grade to middle school. They were smallish ceremonies that she seemed pretty oblivious to, honestly, other than to want to leave sooner than later. So why make her uncomfortable for something that we don't have to attend?

I got email from her teacher this afternoon, asking if we were planning on letting her participate. My husband and I had talked about it when she came home from school with graduation information in her backpack last week, so I was able reply immediately. And wondered as I did if she'd think we were doing something wrong by not giving our daughter a chance to grow with her classmates. I suppose all parents second-guess their decisions, but sometimes it seems like that's all I do...

Uncertainty and doubt abound when you have a child who can't necessarily communicate clearly. That can be a sharp jab in the chest sometimes. Hallmark managed to dig the knife pretty deep last night, in this commercial. If you don't want to go watch (it's pretty short), here's a transcript:
[various moms speaking]
Tell me that I've been a good mom.
That I actually taught you something.
Tell me I'm ready. [listening to a sonogram]
That you look up to me.
Tell me you like spending time with me.
That I'm doing this right. [with an infant]
Even if I'm doing it alone.
Tell me you're proud of who we are.
Just tell me.
[voiceover] For everything moms need to hear, there's a Hallmark card.
I think I can count on one hand the number of times I have gotten a spontaneous I love you from my daughter. There's nothing on that list of things "moms need to hear" that I am ever likely to hear from her. She's happy and healthy and that counts for a helluva lot, in my book. Every unasked for gesture of affection, every silly smile, every thing done without being asked -- these are the milestones that are truly important. Those are the moments truly worth cherishing. But oh god, that doesn't mean it wouldn't be nice to hear the words anyway...

Tuesday, April 24, 2012

The Blame Game


I originally started writing this in response to another mom's blog post, but didn't want to hijack her blog with my rants.

What is it about being a mother that seems to be steeped in guilt? I think that somehow, somewhere, women are either hard-wired to self-blame, or it's passed from generation to generation like a gene for cancer. I wanted to have a child, but my husband was unconvinced the time was right. Three years after her birth, she was diagnosed with autism. Shortly after, I started looking for the reasons why it was my fault. I wanted the baby, so my selfishness was being punished. Then the usual suspects: I didn't read to her enough, I didn't nurse her long enough, I didn't hold her enough/held her too much...

Mothers need to stop this line of thinking, immediately. I don't know how much of this is linked to Bettelheim's Refrigerator Mother theory (may he roast in hell) and how much is just a legacy of guilt we carry from mothers to daughters, but we have to stop. We do such a disservice to our children, and to our SELVES.

Along with the guilt and shameful thoughts, there's the things people say intending to comfort. (And then more guilt for feeling resentful about words meant in kindness.) People have told me that A) God has a plan, he meant her to be this way; B) She chose to be like this on this turn of the incarnation wheel; C) I have something to learn in this life, and she was given to me to learn; D) God never gives us more than we can handle. Bear with me, I'll take those one at a time. (And very likely offend people on the way.)

A: God's Plan
I refuse to believe in a god that would deliberately make a child's life painful and difficult. That is not the action of a loving god, that is the action of a psychotic god. Autism isn't just some little ordeal to overcome, it's a life-long challenge of sensory overload, a lifetime of being misunderstood and frustrated, years of being locked in a body that can't communicate effectively. You can keep your god, I want no part of him.

B: Choosing the Challenge
Certain ideas around reincarnation suggest that the soul being reincarnated gets to choose his/her parents, as well as the sort of life that he/she will have in the next lifetime. I'm not convinced that there is reincarnation, but choosing life with autism seems insane to me. The sort of thing that only a very holy person -- someone on the verge of attaining Nirvana -- might do, just to see what it was like. I call bullshit.

C: Lessons for Mom
Another reincarnation idea -- Diana has a challenged life so I can learn something. OK, let me get this straight: this innocent child has a lifetime of difficulties because I need to learn something in this lifetime? I suppose a Tibetan would tell me that she B, chose the challenge, because C, I needed to get something out of this life. B and C are hand-in-glove, I suppose. Bullshit again. I'm just not Buddhist, and I can't subscribe to this.

D: You Can Handle It
This is one of those trite little homilies that's handed out like Hallowe'en candy whenever there's a tragedy or challenge involved. God never gives us more than we can handle. (And if you mention suicide, people will just say that god planned that, too.) Frankly, I prefer Nietzsche: "What does not kill, me makes me stronger."

There are days I cling to life by my fingernails; every day brings a new challenge -- and they're cumulative! It's not like a clean slate every morning. When each fresh challenge piles on top of a new one, by the end of a week, it's a lot. Now imagine the end of a month. Now a year. Now fourteen... I've handled it so far without losing my sanity or my will to live,  but who's to say what might be the final straw? Oh wait, "god" knows, and he won't pile on too much. (And there's just no arguing with the faithful.) With every night I lie awake with despair, with every thought I have at walking away, the guilt I feel for bringing her into the world in the first place... this eats at my Self. All that erosion is bound to wear me to nothing, eventually. Until you know what it is to live my life, don't tell me what I can or can't handle.

I can appreciate that people who have said these things to me have meant it as comforting. But when you are neither Christian nor Buddhist, the words are meaningless. Autism is biological. It is a brain condition, probably genetic in origin. It's not divine, it's not a choice. I suppose if I was going to be really harsh about it, I'd call it a defect, insofar as we understand the brain and how it works. I don't care for the idea that my child's brain is defective, but there it is. I didn't cause it. Possibly a combination of genes from her father and me meshed in such a way to produce enough "on" switches in her DNA to produce the condition we call autism, but there is no blame to assign. I didn't cause it. My husband didn't cause it. It just IS.

Believe it or not, there's a part of me that envies people who do have faith. They are comforted by the words of their priests and pastors, ministers and monks. I am not. I want facts, not fantasy. I want data I can read, science that is replicable, numbers that add up. Numbers aren't comforting, though, numbers don't reassure that everything will work out. However, numbers don't offer false comfort, either. They won't tell me that everything will work out, when there is absolutely no way to know that for certain. Hope was the last thing in Pandora's box; that and a buck will buy you a candy bar. (Which you will then feel guilty for eating, because it cheats on your diet.)

Miss Mary Sunshine, I ain't. Polly Pragmatism, maybe...

Friday, April 13, 2012

Reevaluation Results

This morning, my husband and I go for the results of our daughter's neuropsychological evaluation. I'm not much looking forward to it. I keep telling myself, we already have a diagnosis of autism, there shouldn't be any surprises. But that's usually when the Universe does something tricky and throws you for a loop. (Oh it's fun being me sometimes...)

So anyway, the idea is that we will be able to have this conversation with the doc uninterrupted; the appointment was made when Diana'd be in school and my husband took the day off. The doctor will discuss her findings with us, she'll give me back my file box (yes, a whole file box of paperwork - autism generates a ton of it), the end. I guess what has me so anxious about her findings is the recollection of overhearing some of the things that I could hear Diana saying/responding to the tests she was given. She was asked to identify photos of children and adults as "happy, sad, angry or fearful" and then identify tones of voice (children and adults) with the same four options. The test administrator nearly always gave the options in that order, and in those words. Diana most often responded - when I could hear her - with "fearful," parroting the last option. It was the end of the second day and she was tired and frustrated; just how useful can those test results be? I know she knows facial expressions. I know she can recognize tone of voice. But A) the administrator should have mixed up the options more, and B) "fearful" is a stupid word (particularly with a learning disabled child); "afraid" or "scared" are better choices. It won't make any difference with the results, but I do intend to bring that up with the doctor - she wasn't the test administrator, and I don't know if she was in another room observing or if that session was recorded, but she should know.

Because there was at least one test that I know Diana did poorly with, I suspect she didn't test well the whole two days. It's hard for strangers to get information out of her; that's been an issue all along. When she gets to know the people she works with, and likes them, she typically works very hard. Her team at school always tells me that she makes good progress, works hard, and is a joy to work with. I know the doctor will not have seen that from her.

And I guess that is what has me conflicted. Part of what we're attempting to do here is indicate that she's not capable of being independent when she's 18, and become her court-appointed guardians. We can't just show up at a courthouse on her 18th birthday and announce this without some proof on our side. What we're doing is laying groundwork for her becoming our ward. Unless she has some very significant growth and progress in the next three years, that's exactly what will need to happen. The worse she does on tests like these, the better our case for guardianship. But this is my child - I don't want her to test badly. I'm really not looking forward to this morning.

Several years ago, I had a meeting with Diana's social worker, apart from the typical IEP setting. At some point she asked me how I felt about all this -- "this" being the tests, the meetings, the special education process. I told her flat-out that it was depressing, it makes me angry and sad, and that I hated it. I love my daughter and will do anything for her, but I hate the process. She looked flat-out stunned. I don't know if it was my matter-of-fact tone of voice that made the statement so badly, or if I was the first person to ever answer her question that way. I don't know, and didn't ask. At the time, I was a little amused; still am, actually. (Shocking people has always been entertaining for me, particularly when I'm shocking them with truth.) It's been probably 8 years since then; I still feel the same way.

UPDATE, RESULTS: I really like this doctor, and my husband seemed to like her as well. She's candid without being harsh. Unfortunately, her news was not what you'd call uplifting. There were no surprises; we live with this child, we know, roughly, what she can/can't do. And the news was that she's functioning at levels between kindergarten and second grade, depending on the skill. We know the abilities are in there, somewhere, but the tests can't pull those things out of her head, she has to produce them herself. And she can't.