An Update

It's been awhile, right? I've relished in Josh's recent motivation to blog more, and was grateful that it took the pressure off of me. Because, quite honestly, I wasn't feeling it. Maybe it's the cold, rainy weather with no foreseeable hope of spring. Maybe it's my frustration and disappointment with myself as a mother. Maybe it's because I've been involved in other, much more worthy endeavors (though this one is entirely untrue). Regardless of the reason, I've really wanted to update everyone on what's been going on in our lives. Since this blog caused such an amazing outpouring of love and support from family and friends, I didn't want any of those people to think that their words and love were overlooked or taken for granted. I received great advice, was led to books and resources that were extremely helpful, and, most of all, felt that not only I was loved, but that my son -- my dear, sweet, trying son -- was loved for who he is, without any other expectation.

So here's what we've been up to, intermingled with some photos from a recent trip to McDonald's. (Yes, we go there. No, we've never caught malaria.)

Lila: Let's start with this lovely.

She continues to be the tangible manifestation of God's love for me. It's not because I love her more, even though Josh's post said so, inciting an exasperated outrage in the process. It's just God saying: "Hey! I know you've tried and tried and tried with the boys, and they continue to ignore you/run around aimlessly when given directions (oftentimes naked)/have no ability to complete any given task/wish your face would turn into a wii. Welcome to Lila. She'll learn to say 'No, thank you,' put on her clothes and shoes by herself, and say, 'I love you, momma' 3.5 years before your boys. She'll amaze you with her ability to calm your nerves, make your boys laugh, distract Noel from a meltdown, and get her dad to do anything she asks. She'll also look really stoically old-fashioned while at a recent playdate."

But, let's not forget that she's turning two. So she's simultaneously screaming louder, demanding more, and being irrationally stubborn, while also becoming all sorts of gorgeous as each day passes.

And then there's this one.

Here's the thing about Jonah. (And yes, his lips are really that big and red. There are ladies all over America who would kill for those lips.) He's maddening. And annoying. And you know why? Because it's like having a really slow-to-speak parrot, who listens quietly, and then starts spewing out the words and attitude that you've been throwing around for the last six years. And, guess what? It's too late. The damage has been done. So when he says to his brother, "Really?!?!? You thought that was a good idea to stand in front of the TV while I'm playing wii? That was really great, Noel." I bow my head in shame, send him to time-out, and hope he never starts calling me a hypocrite. Apparently, sarcasm really IS ugly!

Here in Oregon, we have a week long Spring Break. I'll pause for the collective moans of the moms out there. Also, here in Oregon, we have Spring Break at a time that will almost guarantee rainy, cold weather. But, amidst the frantic attempt to entertain my boys before they destroy everything we own, I have come to realize something about Jonah. He's awesome. He can entertain himself for hours on end, most often with a paper and pen, drawing page after page of Mario-themed tracks and characters, and then, in an agonizingly long manner, demonstrate how each 100 mile track works. He's also so sweet to his sister.

Oftentimes, after we put him to bed, Josh or I will say to the other, "I like Jonah so much." Because it's true. We love him unconditionally. But we also like him a whole lot.

And, finally, there's this one.

Here's why sometimes things suck:

1) Our attempts to get him evaluated and find the right path for therapy have been thwarted. We saw the developmental therapist, who had the personality of a bag of hair. And not that fabulous weave stuff that Tyra insists on each cycle, but dry, uninteresting, thinks-it's-smarter-than-everyone hair. When a doctor is going to diagnose and treat my son, yet won't say two words to him, other than to reprimand his every action, I don't consider this a good sign.

2) My failures as a mother are amplified to the nth degree. I'll admit it. As a mom, I'm inconsistent and oftentimes a pushover. Would I rather clean their room than fight them for an hour, even though it's their daily chore? A thousand times, yes. But I try. I've made charts, tried punishing, tried rewarding, and done a song and dance. But I have yet to find ANYTHING that motivates Noel (good or bad). I know it's the Aspergers. But it doesn't make me feel any better as I continue to avoid doing the things that I KNOW are going to make him a better person, but that will be a long, arduous process to teach.

3) Spontaneity is out the window. I hope you watch Parenthood. Not only because it's a good show, with great performances, but because their son is my son. There was a recent episode in which the father, thinking he was doing a great thing, takes his son to an amusement park instead of school. And the ride breaks down. And the meltdown ensues. And he realizes that he just can't do that. I've recently come to the sad realization that the same thing is true for our family. How badly I want to say, "Hey! If you guys are good today, we'll go swimming tomorrow!" or "Clean your room for a week and we'll go get an ice cream." My son only hears, "We'll go swimming!" and "We'll go get an ice cream." and then you can either drop everything you're doing and carry through with it, or you can suffer the consequences. And you don't want to suffer those consequences.

Here's why there's hope:

1) He's doing well in school. The teachers continue to be a God-send, going out of their way to transition him to new routines and understanding his limitations. And he just has fun. So, while I anticipate an ugly learning curve each school year, I know we can do it. He even said "Bye!" to some of his fellow preschool attendees (I won't go so far as calling them his "friends") the other day. I was pleasantly shocked.

2) We are on the waiting list for another evaluation/treatment program, that I think will be really good for him, if we can ever manage to get an an appointment. One thing I've learned over this process is that there are way few resources for such an ever increasing need. And I was led to this program by a friend from church who linked me to a local woman's blog, who I emailed, and who then told me about it. Which is a miracle in itself, is it not? Could I ever say that God is not distinctly aware of our lives and our challenges?

3) Thank you, TV. TV gets a bad rap. But thanks to some recent depictions of characters with Aspergers (like Parenthood, and Abed from Community), it helps us all understand it a little better. And not be afraid of it. Seriously, who is cooler than Abed? No one, I'd argue.

3) I have my husband. And he's the best. And we're both learning. I'm not going to sugarcoat it. Noel's Aspergers brings out the very worst in both of us. I've never, ever seen Josh get so mad. I never thought I'd say or do some of the things that I do -- the worst things at the worst moments. But we're figuring some things out. There are some days that go well, most often days that nothing out-of-the-ordinary is asked of Noel, that we manage to stick to the routine, and that no video games are involved. Then there are other days when I wake up to a meltdown after a long, sleepless night of periodic wakings from Noel, and I think, "I will not make it through this day." But I do. I could handle it without Josh, but I'm sure glad I don't have to. And it makes those retirement years that much sweeter, right?

So, there you go. As I read the post I wrote those months ago, soon after learning Noel's diagnosis, I cringe at my naivete'. The reality is much less succinct. But the general sentiment is still the same. He's my Noel. I love him. I always will. And I'll be a better person because he's in my life.