Oh, and another thing...

I was SO excited to take Jonah to speech therapy today. Any time he has a new trick, I can't wait to tell someone. Look! Autistic, but genius! Lately, he has been working with his magnet board, placing letters on it, and (correctly) naming the letters as he goes. Okay, Gabby can't even do that. They're two years old. Awesome, right? Nope.

Now it seems that Jonah might be hyperlexic. Honestly, I'm not even totally sure what it means yet. Something like, he's learning letters almost like he's seeing a picture or a shape, rather than understanding what they are and what they do. Precocious reading is, evidently, not good news.

My reaction? Come ON. Even the things that seem promising to me are in fact things that need to be overcome, minimized. I feel like I can't even trust my own reaction to anything he does without wondering... okay, is he sensory seeking or does he just really like to swing? Every little thing feels tainted. I'm so frustrated and madmadmad. I want to be able to just let him play how he wants to without thinking- okay, time to redirect- where are my flashcards?

I guess my mistake is to have any expectations at all. I keep thinking I know what we're dealing with and then something new comes up. And that, I guess, is autism. And if I'm being totally honest with myself, I guess I haven't given myself over to this "new normal" as completely as I thought.

Speech Fairy

While Elena doesn't know the whole score with Jonah, some differences are obvious to her, and his freakishly full schedule does not go unnoticed. I explained that he is having a little trouble learning to talk, so we are taking him to speech therapy so that a special teacher can help us teach him to talk. Somewhere in this process, she must have spaced out (no, really) or misheard me, but now when we take Jonah for his appointments, Elena says that we are going to the Speech Fairy. Which I refuse to correct because it is both cute and apt.

When we first started speech therapy about 8 months ago, Jonah could say Mama, Daddy and uh-oh and not much else. Now, we can go through whole stacks of flashcards, and he can name every picture I show him. More than that, it's like he was sort of locked inside himself, and Ms. K (the speech fairy) knew just how to turn the key and open him up to us. HE talks to ME. HE tells ME, "I love you" or "sweet dreams". Magic. It's just- she flipped the switch to "ON".

And he gets such a thrill out of this new "Hey, I can control the universe with my words" thing. Like, that's right Mama, I just asked for "more" puzzles like a badass. Probably the thing he says most is "good boy!" which we scream at him every 10 seconds for some reason or another, and he laughs and claps and is just 100% WITH us.

So, thank you, Speech Fairy. You can't imagine how much this means to us.

First Day of Preschool

Jonah was not so much a fan of the backpack. Fair enough. It was pretty heavy with all the first day junk and Gabby took several steps backward, windmilling her arms when I put hers on. Anyway, he quickly recovered and had a great first day. Both of them were all smiles when I went to pick them up, though it was suggested that they were a little troublesome during naptime. You don't say. Anyway, cute pics:

House For Sale

I have tolerated the wildlife around here with as much grace as I can muster. Roaming packs of deer punks- fair enough, they were here first. Scorpions have been a bit trickier, as they sting like hell and I've had to slap one off of my son's face. I don't like them one bit, but they don't keep me up at night. Finally, I must admit defeat, and put our home on the market. Upon entering my garage this morning, I came face to face(s) with this:



Now, I don't want to overstate my feelings about spiders, but our relationship goes something like this:



In other words, I fear them like grim death, but if I am backed into a corner, it is kill or be killed. Needless to say, I unloaded about eight ounces of wasp/hornet spray on this thing. Okay, if any of you are thinking, "Aww... she killed that sweet mommy spider and her hundreds of cute tiny babies", first of all- you are a freak. Secondly, we are no longer friends. If you see anything other than a snarling mass of evil, there is something seriously wrong with you, and it's probably best if we never speak again.

I do fear that this problem is more of a central Texas thing in general, rather than specific to this home. Before we built this house, we lived in one of those fake new/old neighborhoods with white picket fences and alley parking. One very unfortunate afternoon, I found a tarantula in our back yard. Okay, it was outside, where it belongs, but WAY too close to my back door. Clearly, I had no choice but to smash it to smithereens. Unfortunately, this took quite a bit of mental preparation. For an inordinately long time, I stood in my back yard with a large garden shovel hoisted above my head, paralyzed by fear, shaking and sweating like Kathy Bates in Dolores Claiborne. When you are trying to conceal a sociopathic drive to kill, the lack of a privacy fence is less than ideal.

So. Brunch at my house, ladies?

Me & Jim at the Emmys

Okay, not really. But I'm SO excited to watch tonight, and see him win (oh, yes he will, if the universe knows what's good for it).

And PS- yes, I realize that the dress I'm wearing is A) white B) satin C) shirred and D) has puffy sleeves. And the tights are sparkly. In my defense, it was 1991, and nobody ever accused me of being a fashion icon. I further realize that I am sporting the brow of early man. I did separate the mono-brow into the more socially acceptable two brows in the fall of 1992, and have been enjoying a dual-browed existence ever since (though they require intense daily maintenance).

Anyway- go get 'em Jim Parsons. You've got swarms of loony Texans rooting you on.

First Week

Having increasingly strange nightmares. Last night's episode featured characters from Top Chef Masters. REALLY need to get my stress level under control. The main problem is, every time we think we've made a decision regarding Jonah's care, a voice of dissent comes along, or the program turns out to be kind of sucky. Which is not so much what we're looking for. At this point, Jonah has: two speech therapists, an occupational therapist, a nutritionist, and an early childhood intervention specialist. Plus he needs a BCBA, which we're still sorting out. I'm starting to wonder when I'm going to actually have time to implement any of these tools/lessons/skills we're supposed to be working on. On the plus side of things, he's added yogurt back to his list of foods, so... well, maybe at least now I'll have one kid who can poop without assistance.

I cannot believe I actually made it through this first week of kindergarten. Laney got the teacher we were hoping for, and I have to say that her school pretty much rocks. It's like they had a contest to see whose room was decorated in the most interesting/warm/welcoming way, and it just feels good walking around in there. Also, the school got another TEA excellence rating last year, so I feel good about sending her there (at least that's one decision made, with a pleasing result).

It's impossible to get any information out of her, though. Her reportage tends to be, well, creative. This week, she has informed me that one of the boys was teaching her how to "tongue fight" (umm... that BETTER not be true) and that a girl in her class slapped her, but her teacher thought it was funny and so rewarded the girl and punished Laney. I know she thinks she's hilarious, but I'm a woman on the edge here. Don't mess with me, girl. Just tell me what letter your class is working on!

Next week, the babies start preschool. God help us all.

The Bahn

Okay, so... Schlitterbahn rocks, and I can't believe I'm just now figuring that out at 37. By far, our favorite was the Torrent River, which is like a lazy river, except not lazy. We spent the better part of the day on that loop, Laney warning me about coming waves and me holding on to her tube and gazing restfully at the clouds rolling by above us. Honestly, it's been a while since I've been so relaxed. In a bathing suit no less- in public! I'm so, so glad I had this time with my big girl before she is stolen away by the Texas public school system. Sniffle-sob.

When we got home, though, there was a price to be paid. Gabby ran at me, and just about knocked me over. Jonah? Well. His sneer of disdain said it all. Oh, so you think you can just waltz out on me for a 48-hour girl party, and then expect to be welcomed back? Think again. You will pay handsomely, and I will withhold my infinite cuteness from you. Or possibly- Hmm... you do look familiar, but I just can't quite place you. Hey! Keep your hands off me! Daaaaddyyyyyy! Anyway, day 2 he wouldn't let me put him down and today was business as usual.

Meanwhile, I'm considering which of my organs I can possibly sell on the black market to pay for all the services we're going to need. For example, if he goes to ABA 3 half-days a week, that's $1300 a month. Right. I'm still trying to figure out what, if anything, my insurance will cover, but I have my doubts. They only paid for 20 visits with the speech therapist. Sure, 20 visits should be ample time to correct any and all speech deficits. Shame on them. Anyway, my liver is in good shape... any takers?

Justice League

Today, Elena (5) was assigning a super power to each of us. Jonah's was the power to chew things- like books, she said. Yes, well. Too true. Every single book in this house has rounded corners. Books he'll eat- it's food that he refuses. Still, good roughage. Anyway, I asked if my powers could be super energy and the ability to make decisions. She declined and instead assigned me the power to make dinner. Right.

I am paralyzed to make these decisions about Jonah's care. I mean, if I pick the wrong ballet class for one of my daughters, no biggie. Just pick another one next time. If I choose the wrong program for Jonah, it could seriously impact his future, and I break into a cold sweat just thinking about it. Again, I could change something if what we're doing is clearly not working, but there's only so many times I want to jerk him in and out of relationships with care providers. At the moment, I'm trying to decide about home-based vs. site-based ABA, and then which program either way. And like I said- paralyzed.

We are starting a team for the 2010 Greater Austin Walk Now for Autism Speaks (Oct 9th). I'll try to post a link so y'all can join the team (technology is not my strong suit). Hope to see you there, and if not, feel you cheering from miles away. These little guys need all the help we can give them!

Sleepless in Central Texas

Late at night is when the trouble starts. I can be positive and purposeful all day, and as soon as I lay down, doubts and fears rush in to meet me. Last night, I was lying there thinking about how much I've looked forward to this first year of preschool for the twins. I had a very clear image in my head of the two of them with their little lunchboxes, walking into their class. After all the work of having twin babies, I would have the pleasure of knowing that they would be doing this together- little buddies going off to preschool. And now I just feel sad, sad, sad. I'll still have this first (and only) semester for them to do that (before Jonah qualifies for PPCD), so I'm grateful for that. I just keep telling myself, "Get over it. It's over. Who ever gets what they expect anyway?", but I'm still just disappointed as hell. I just hope so much that they can be in kindergarten together, that he can catch up enough to do that.

I'm trying to sift through all the literature out there, and it's a mess. There is such divisiveness amongst parents of autistic kids, and if I see one more mention of Jenny McCarthy and that Andrews quack, I'm going to scream. Really, should we be taking medical advice from a playboy bunny and a "doctor" who lost his license and caused a world health crisis to boot? No thanks. You tell me autism is caused by PB&J? Fine, show me the data, and I'm on board. Sorry, but I feel strongly about this vaccination debate. So much time and money has been wasted refuting the assertions of a nut job. Time and money that could be spent looking for effective prevention and treatment options. Grr. ANYWAY... I have a big 'ol shopping cart going on Amazon, and about a million calls and emails out to service providers. I guess I just needed to hear the word, and now I'm ready to roll. Look out, Temple Grandin :)

Nut Job

Okay, so I'm having kind of a weird reaction to this whole thing. I feel oddly hopeful, energized, purposeful, etc. I'm wondering if A) this is my greater purpose and I'm ready to move forward or B) I'm a crazy person in denial of my true feelings. I mean, don't get me wrong- I'm sad and scared and worried too, but in a bizarrely peaceful way. It reminds me of how I felt when I found out I was going to have twins. So completely all over the place. The blessings are obvious, but so is the work load.

I'm so grateful to all of my friends and family who have supported us this week. I was especially glad to talk to my friend Shauna who has the dual credentials of friend-for-20-years and school psychologist. A handy person to know, and the best friend and supporter you could ask for.

And okay, I admit it, I watched the movie Temple Grandin. Twice. If you want to feel better about the whole autism thing, it's not a bad idea. Hard to watch how much pain she had growing up, how much difficulty she had relating to others, but certainly an amazingly successful woman, regardless of her diagnosis.

The little man continues to thrive. He's expanding his vocabulary just like an 18-month-old might (almost). Every day, he adds new words and is speaking more purposefully. Can't beat that smiley, "Hi, Mommy" I get in the morning! Well, maybe the, "I... love... YOOOOOOOOU!" he does at bedtime. Meanwhile, we're working on adding OT and ABA to the speech therapy we're already doing. In a way, I can't wait for him to go to PPCD and be immersed in these programs on a daily basis, but then again I'm barely ready to let Laney go off to kindergarten next month. I certainly wasn't planning on handing over my 3-year-old for 5 hours a day, but I have to remind myself that his needs FAR outweigh my need to smother him with kisses several times an hour. It will also be good for Gabby- I'll get some alone time with her that is hard to come by with twins.

Yeah, like I said- all over the place.

Day 2

We got the official diagnosis of autism for Jonah yesterday, but really, it's been a long time coming. Since he is a twin, it's been easy to see, along the way, the subtle (and not-so-subtle) differences. The eye contact that was so much harder to get at 6 months. Spinning toys at 9 months. Failure to develop language at 12-18 months. Preference for playing alone that still persists. I really do think, though, that all of these symptoms are milder than they could be. I can tell you that, just from observing other children in the waiting room at speech therapy, we are lucky-lucky-lucky.

And of course, that's not the only way we are lucky. I couldn't be more proud of Jonah. Of who he is, of what he's accomplished. Today, when he wanted me to sing along with a song on the radio, he walked up to me and put his little fingers on my lips. Smiled like crazy when I obliged- no accounting for taste :) He has his own way of letting us know what he needs now, and it's such a pleasure to finally be able to do that. Also, he's darn cute, if I say so myself.

I cried for most of the day yesterday, but today what I feel most is relief. We waited so long to get the appointment with the pediatric neurologist, and we spent all that time questioning whether we were worried for no reason or (more likely) wasting valuable time. Honestly, I'm glad it's over and ready to just dive in and get him what he needs. What that is exactly is hard to say. There seems to be no road map, no concrete plan of action. It's probably impossible to have one with such a varied spectrum.

So, anchors aweigh.