Issues Way Beyond My Pay Grade

I am trying very hard not to make this an "all autism, all the time" blog, but let's face it, we're not even a year out from the diagnosis, so there's quite a bit of thinking about autism, talking about autism, worrying about autism, etc. in this house. Bear with me, if you will.

Before the diagnosis (I say that so often that I'm starting to think it warrants its own capital letters: The Diagnosis. Possibly it needs italics as well.), we were waffling about having a second child. Part of it was that Nate was just really awful for the first four, four and a half months. He was generally unhappy about life. And so was I. Because I don't care what kind of sunny disposition you've got, if you're spending 24 hours a day every day with someone who screams a LOT and is only halfway content when he's being carried all the time, even you will be moonbat, spitting cherry pits crazy after a time. I seriously think I had PTSD from this time period. For a long time, when I would hear a baby cry like that in public, I could feel my blood pressure rise and my entire body would tense up. Good times.

Once Nate was past that phase, he became this generally cheerful child, good at amusing himself and oh-so-much-fun. I was not especially eager to go back to the newborn phase. I was enjoying my son and not feeling any particular pressure to have a second child. My husband and I decided to table the discussion until Nate's 3rd birthday.

And then, of course, less than 2 months before that discussion was to take place, we got The Diagnosis. And we started reading (oh, lord, the READING that comes with an ASD diagnosis) and finding all sorts of information. Among the many, many things we digested in the days and weeks after finding out was the scary statistic that as many as 30% of children with an older sibling who is autistic will also have some form of the disorder. (I would link, but there's a lot of information out there, with statistics ranging from 5% to, more recently, 30%.)

Well, shit.

For a lot of people, 30% is not a formidable percentage. After all, 25% of pregnancies end in miscarriage. Not that having a miscarriage isn't a painful and heartwrenching experience, but the 25% statistic isn't enough to put most people off. But this statistic....do you know what's in that 30%? The struggles, the meetings, the therapies (or lack thereof)? And the terrifying possibility that a second child could be more severely autistic than his or her sibling?

We decided that, for us, it wasn't worth the risk. We couldn't bear the thought of bringing someone else into the world to possibly be saddled with the difficulties that autism brings. And I, for one, knew that I would not be a good mother to two children with special needs. A lot of the time, I feel that I'm inadequate to mother the one I already have (which, I have learned, is pretty much universal among mothers, special needs children or no). So, although you could just as easily say "Hey, there's a 70% chance a second child would be absolutely fine," we put aside our vision of us as a four-person family and went on.

And then came the anger. No matter my ambivalence about having a second child before The Diagnosis. No matter that hey, now I could use the third bedroom as a craft room/guest room. No matter that we could unload all the baby stuff I'd laboriously packed and carefully labeled, moving it from our old house to the new one. The decision had been taken out of my hands, I felt, by a faceless thing. I am not one to cry "no fair!" But this time, I did want to cry and wail about the unfairness of it.

I know that this is not the same as infertility, not at all. And it's not the same as miscarrying. I am not equating my experience with those, but for the first time, I felt that I could truly commiserate, even in just a small way, with my friends who struggled with infertility and miscarriages. To have a child taken from you, even just the idea of or hope for a child, by something beyond your control is a terrible thing. There is grief. There is anger. There is humiliation and hurt. I understood that before, but I think I have a greater appreciation for it now. We all want to feel that we're in control of our lives. To be reminded that we are not, that we are not guaranteed success of our best-laid plans, that we are all subject to the whims of the universe, can be quite a blow.

Of course, with this decision comes the fear of what we will say if/when Nate asks why he has no siblings. We're going to have to work out what we want to say before the issue arises, because the very last thing we want to do is to give him the impression that what he has, what he is, is so terrible that we couldn't bear to deal with it again. He is wonderful. Challenging, yes, but I've not yet met a child who wasn't in some way. He is smart and funny and affectionate and the thought that broke my heart when I started to suspect that he was autistic was that other people would dismiss him out of hand and never get to know how wonderful he is because of this label. But he will likely struggle with this all his life. To watch him struggle is hard enough, and we already feel guilty that we contributed to creating what makes him struggle. It wouldn't be fair to any of us to do it again, with potentially worse results. Neither Chet nor I could bear up under the strain of that guilt.

I have largely made peace with our decision. I don't have any particular desire to have a second child. Seeing other people's newborns doesn't fill me with a bitter longing. I feel very relieved, for example, that I will never have to potty-train another child. (That's another blog for another time, provided I survive. Ugh.) But every once in a while, I feel a pang of loss for the family I imagined I'd have. But, hey, three is a magic number.

Something's Got to Give

I have struggled with depression most of my life. Being a mom to a special needs child has not exactly helped with that. (While I'm on the subject, can I just say how much I've come to loathe the term "special needs"? I suppose all children have "special" needs. The term just sounds like they should be wrapped up and coddled and pitied and should never even hope for any semblance of a regular life.) Motherhood brings its own set of neuroses and feelings of inadequacy. Layer a developmental disorder over that and add the attendant guilt, anger, isolation, and yet more inadequacy, and it's enough to make anyone nuts, let alone someone who was already halfway there in the first place.

Things have come to a head for me lately because of many things. It's summer, which means fewer clothes, which means more of the body I hate is on display for public derision. This summer, there's even more of me on display than usual, because Nate loves water and that means lots of going to the pool. My hair is in a state of...I don't even know what. I'm trying to potty-train Nate. (Unsurprisingly, it is not going well--initial success and then lots and lots of failure.) I am feeling very much like a fat, ugly, friendless loser who is failing her child in all sorts of ways and earns only the smallest of points for meeting the bare minimum on the mom and housewife fronts.

The thing is, I know, intellectually, that I'm being way too hard on myself. I wouldn't judge anyone else this harshly. It's one thing to have high standards for one's own behavior; it's quite another to have impossible standards that set one up for perpetual failure. I know these things in my brain. It's that shadowy, dark, whispery part of me that I can never quite stifle that rejects the truth and succeeds in making me miserable.

Let's face it: it's never been easy to be a woman, or a mother. There has always been pressure to align one's looks with the accepted ideal. There have always been standards for how one should dress and behave and what is acceptable and what is not. To an extent, these things are helpful. They help us maintain a sense of law and order. But at a certain point (and I think most of us can agree that we're way past that), these things become a yoke that we've created, oftentimes in order to sell something. At the end of the day, when we're bombarded with endless images of perfection, it's amazing any of us are able to stand under all that psychological weight. We're all damned if we do and damned if we don't. We're either too fat or too thin, too hairy. We wear too much makeup or not enough. Our hairstyles are too frumpy, too extreme, too grey, too long, too short. Our clothing is too cheap, too mumsy, not stylish enough, too tight, too loose. If we stay home with our children, we should feel guilty for not having "real" jobs and contributing monetarily. If we work, we are chided for "letting some one else" raise our children. Our parenting choices will be commented upon, regardless of what we choose to do. And lord help those of us who have children who sometimes have public meltdowns. We're the recipients of hairy eyeballs and muttered disparaging remarks about our disciplining.

So, see, some of this pressure is internal, and some of it is external. I don't have to accept the ridiculous standards that are thrust upon me. I know that. But those standards feed that shadowy part of me. They give it fuel. That part of me that suspects that I don't deserve all the good things in my life (and oh, how many good things I have and am grateful for) grows fat on the disappointment and disapproval that comes with failing to meet those standards. I have yet to figure out how to control that shadowy part, and all I can do is try to beat it down so that it doesn't crowd out the rest of me, who enjoys and is deeply grateful for all of the blessings that are part of my life.

I know that even though I feel that I'm failing, in reality, I'm doing just fine. We do not live in squalor. Messiness, sure, but not squalor. The bills are paid. We are all well-fed (even if the smallest of us seems to exist on peanut butter, boogers, and air, at least that's only by choice). My son is thriving and progressing and he knows he is loved and accepted. And my failure to live up to the airbrushed ideals of marketing campaigns shows that I am an average human.

If my life were a TV show, this is where I'd end this post with some pithy wrap-up that ends it all on a positive note. But this is real life, and it just doesn't work that way. Even though I know all of the above intellectually, there is a great divide between knowing it there and knowing it in the darkest parts of my heart. There is no quick answer, no affirmation that will apply in all circumstances like a soul-soothing balm. I will fight depression for the rest of my life. I know that no matter what I do, I will never feel that it's enough, or that it's right. And most of the time, I can use that to my advantage. I can use it to push myself to do better, to try harder. But every once in a while, I can't. I run out of steam, and it will always be that way. Maybe that dark part of me is too hungry to remain unfed.

I realize that some of this may sound melodramatic and alarming. I promise that I am not in any danger, and I know myself well enough to know that I will pull out of this in a few days, and that it will come back again, and I'll deal with it in the same way again. It's a cycle, and not one I appreciate or am proud of, but it's my own. If you're battling the same thing, I raise a glass to you. Here's to perpetual inadequacy. Ain't it a bitch?

Summertime, and the Living is Angsty

So here is where, if I thought I were actually writing for an audience, I might apologize for failing, yet again, to post more, as I promised. But since I'm pretty well writing for myself (or anyone who might Google "completely pitiful and rarely updated blogs"), skip all that noise.

It is summer, and I am home with Nate every day. And I am trying (and failing--notice a pattern?) to have some sort of schedule for us, and attempting to work on things with him, and I am feeling, once again, completely out of my element. Because my son has autism. And I don't know what will work best for him. And because no matter what I do, I will never feel that I'm doing enough, or that I'm doing the right things, and any future difficulties on his part will be irrefutably traced back to his mother being an absolute tool.

Granted, my son has high-functioning autism, and he's made great progress over the last several months. But I'm not so sure I've made progress. One of the crappiest parts of being the parent of an autistic child is that even though there are so many children with autism, we know next to nothing about it. And because there are so many children being diagnosed, and we're still suffering through a recession, services for these children are severely strained and/or non-existent in most places. Among the reams of things you read as a parent of an autistic child (okay, that's getting cumbersome--how about we say PAC instead?) is that early intervention is key, ABA (applied behavior analysis) is the most successful therapy, and that autistic children should receive 10-40 hours of ABA therapy a week. And most of that is to be done in-home. Which means a sliver of time with a trained ABA therapist, and the rest is to be covered by the PAC.

As if an autism diagnosis isn't stressful and bewildering enough, now you get to search for services. And you get to find out that there aren't many, for the most part. And that magical ABA therapy? Yeah, it might not be available in your area. Or if it is, it may cost you way more than you could possibly afford. Or, if you're like us, lower-cost services may be available...if you're willing to drive 2 hours or more each way. I could go on and on about this, really, but I'll spare you the details, because it's all been said, and much more eloquently/humorously/less stupidly on a million other sites. I'll just tell you what happens when I'm involved.

So! I say to myself, I can do this! Here's this handy book we were given when Nate was diagnosed. Let's read about ABA. We're two college-educated people (and here I am referring to myself and my husband, lest you think the diagnosis jump-started a dissociative identity disorder), and I even minored in psychology! We can figure this out!

On the surface, ABA is fairly simple. But factor in my near-crippling Mom anxiety, my reliance on People With Credentials to reassure me, my tendency to start off at way too high a level for my actual skill set, and my son's nearly-3-year-old attention span (notice how 3/4 of the problem is me-related. Yeah.), and you might as well stand me at a blackboard featuring an impossible mathematical equation, in front of an auditorium full of people, and tell me to solve for x. Oh, and I'm naked. And the audience is made up of mathematical geniuses who also model. And are superior parents. Who also dress well and probably can remember if they've brushed their teeth this morning.

At first, I made some overly-optimistic schedules. It became clear in the first day that those would have to undergo some serious revision. And the more I looked at that, and the more I read about autism, and the more calculating I did about how much time I needed to devote to working with my son, the more depressed and frustrated I got. How in the hell was I supposed to work with my son for up to 8 hours a day, plus do the regular chores that needed doing, cook dinner, and keep myself from resembling a feral cave-dweller? The answer was clear: I could never sleep again. Luckily, before I could follow through with that plan, two wonderful things happened: my son turned three, which meant that his services (which up to then was just speech therapy) would go through the school district, and I discovered that our particular school district had a preschool for children with developmental delays. It was like the heavens opened up and said "Randi, we have created for you a way to save you from yourself." We finished Nate's IEP the day before his birthday, and on the Monday after his 3rd birthday, Nate started going to preschool.

It was glorious. And he was improving. We could go to the park and encounter other children and not immediately have to leave. He was saying more words, and he loved his teacher and would do more for her than he did for us at home. And then my subconscious interrupted all this blissfulness with a tap on my shoulder, saying "uh, it's late April. And school lets out in May. And he'll be here all day, every day. And you have to do something with him." Oh, crap.

So I made another, less overly-optimistic schedule, which was still a failure. But he's still improving. I work with him on sharing and art and other things, and on Tuesday, he starts getting speech and occupational therapy for the month of June. And we're doing fine, really, and I have stopped feeling quite so insecure in all of it, because I have realized something: I'm not ever going to be a perfect parent. He's not ever going to be a perfect child. (Whatever either of those things means, anyway.) But I always let him know that he is loved and safe and it's okay to get things wrong, and how wildly proud his father and I are of everything he accomplishes, and for now, that seems to be enough. Enough to make him feel secure enough to make progress, in spite of his mother's staggering ineptitude.

I'm still going to try to have him potty-trained before school starts again, though. Because what's my life without a near-impossible project?