Schedules and more!

I've been neglecting thoughtful blog posts lately, mostly because I have hardly had the time to breathe, what with boys, lunches, therapies, cleaning, trips, getting sick, knitting, and sleep. (Don't knock those last two, they make all the others possible I tell you). Today I'm writing for real, juggling two topics, and hoping I manage to get to everything in a moderately coherent few paragraphs.

Topic #1: The Second Child Syndrome
I realize that every second child gets a little less attention that their older counterpart, just by virtue of the math involved. Twenty-four hours in a day can only be divided so many times, and every child has to take a bit, so siblings get just a bit less than than eldest did when s/he was solo. In our house, Toby gets probably a little less attention than most second kids, since Henry requires a lot of time and energy. Aspergers is a tough nut, especially before age five, so while mommy and papa work very hard on making sure Henry keeps it together, Toby gets to fight for attention.

This fight he's learning might be a good thing, except that he is really working for the attention hard, all the time, and it's affecting him at school. Today he went back to try to do naptime again, since he has been doing really well with lying still for naptime at home. We are fully bribing with Oreos, but I need the kid to nap, and I really really need him to nap at school because otherwise my schedule becomes this completely unruly beast that might well be the end of me.

With Henry, we had to focus on ten million things all at once, and were working on getting him to learn about talking and having a conversation, and also trying to teach him self-control. His melt-downs were just not the same beast as Toby's very typical two-year-old tantrums, and Henry was simply not the little demand-machine that Toby is most of the time. We are novice parents again, but novice parents who are stretched absurdly thin trying to manage getting a four year old with Aspergers ready for life. Toby's missing out a bit, and I'm not sure how we fix that. We need to. He needs us to fix it, because he needs to learn things from us. And we need to be teaching him and feeling good about that, rather than feeling guilty, exhausted, and frustrated - especially when he gets sent home from school for disrupting naptime. (Fingers crossed, today is his magic turn around day. We need your vibes!)

And all that brings me to... Topic #2: The Schedule Dilemma

Striving for a simple schedule is a fundamental element of the parenting philosophy that I want desperately to embrace. After seeing Kim John Payne talk, listening to his CDs, reading his books, I feel him. I do. I'm having a rough-as-hell time integrating simplicity into our home life, in large part because I have this conflicted feeling about scheduling.

Everyone says that kids with autism and Aspergers need to get as much intervention as possible before age five - that this window is crucial to their development, their chances for success now and in the future - this is the make-it-or-break-it period. So we are getting Henry as much therapy as we can. We are also encouraging peer interactions by having him in his Waldorf school five days a week, which gives him space for free play with peers, a rhythm for the day and week, a community for friends, and space for mama to get some things done when she can focus on them fully. Henry's schedule is nuts, though.

Here, you be the judge - sample week:
Monday: Speech therapy 8:30-9, Hyperbaric 9:15-10:15, School 10:30-1:45, ABA therapy 2-5, Social Skills Group 5-6. Dinner, bath, bed at 7:30.
Tuesday: OT 9-10, School 10:15-3
Wednesday: OT 9-10, School 10:15-2:45, ABA 3-5
Thursday: Speech 8:30-9, Hyperbaric 9:15-10:15, School 10:30-3:00
Friday: School 8:30-1:45, ABA 2-5
Saturday: Speech Language Pathologist student meeting, Therapy Center Kids Fun night
Sunday: School Michaelmas Celebration

I'd love it if we could have a simple schedule, but I'm genuinely not sure how to make that happen without sacrificing some of the therapeutic opportunities for Henry. Oh, and this schedule ignores the fact that he and his brother get sick, his brother has to see the eye specialist about every month or so, and we inevitably have to rearrange things to accommodate things like the school district evaluation he has tomorrow (all day? I have no idea) because they want to judge for themselves, not trust all of his therapists about how he is doing.

Also playing into this dilemma - Toby and the naptime... I drop Toby at school at 8:40, and if he doesn't stay for naptime, I have to pick him up at 11:45, before lunch. Then I have to feed him and figure out how to make a nap work, and ALSO figure out how to manage driving Henry around in the afternoon when Toby is sleeping. You see, kid needs to nap at school, so I can pick him up at 2:40, making every day but Wednesday completely manageable. For me.

I have knitting in Mondays most weeks, and Bret has work many Wednesday nights. We juggle all of this but it's getting a bit absurd. Oh, and trying to potty train kids with this schedule - honestly, just thinking about it is making me want to stab a fork in my eye. Especially because Toby wants attention, so he'll tell you he has to go potty, ALL THE TIME. But still pee his pants. It's rad.

If I was trying to work right now, I would completely lose it. I know that millions of parents do juggle all this crap, four other kids, and also two full time jobs, and MY GOD THEY ARE AWESOME. They are not me.

So, superhumans, or regular humans with brains that can figure out these things: thoughts on getting Toby in line? Thoughts on getting our schedule into a more manageable state? Thoughts on finding joy in this chaos? I'll take it all.

Now, looking back over this, I'm feeling like this is more of a rant than a post that is meaningful and helpful in any way, and I feel badly about that. I'm not going to change it, however, because I really don't have any answers here. I'm feeling my way through blind, so a little complaining is about what I've got. For now. I do see things getting better. I have a feeling I'm getting better at managing things, even though it seems like I am not better at it most days. It's the rare occasion that someone asks me a question, and I have an answer, or Henry initiates a peer interaction that is totally normal, or Toby and Henry get wrapped up in giggles chatting across the dinner table that I think, wow, this is OK. And because I have those moments, I do know it's all OK, even when I moan about it.

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Totally unrelated to my ramblings, my sister-in-law has a lovely blog, and a lovely giveaway running until Wednesday, and since she is lovely you should visit The Lovely Owl today. And every day.

Open Letter to People Who Talk to My Kids

Dear anyone who might ever talk to my kids,

There are a few things you should understand about my children, lest you have a conversation with one or both of them and start getting some deep concerns about our family.

1. Henry has Aspergers, and he can seriously, truly, I-kid-you-not read and remember details of everything you say and just about everything he reads. He will call you out on whatever he can, because it's fun for him. He will read something and ask you what words mean. He is genuinely asking you for a definition, in the abstract. If he's quizzing you and you mess up, he will tell you you are wrong. If he just wants to know what it means, he will try to make sure he gets the meaning by saying, "so it's like..." and making an analogy. These are often not quite right. Defining words is serious business, don't screw around. He will freak out on you, and he will not let it go. And yes, he can READ ANYTHING, so don't try to be tricky.

2. Henry sometimes makes associations that are off, and it can really screw you up if you don't follow him mentally. Sometimes you have to pretend you get it until you can figure it out. Oh, and his information on people, places, and things is not always accurate, or not exactly. For instance, today we had to pick Bret up after work because it was raining and he had ridden his bike. We couldn't drive in front of his office due to a downtown street festival, so we picked him up in front of Court Services under an awning on the next block. Henry says, "Hey Papa, so you're all done with Drug Court?" He read the sign on the window. Bret is not involved with drug court, promise.

3. Toby likes pretend play, and like most two year olds, he likes mimicking what he sees at home. Please don't freak out if he takes a baby doll, points at it's butt, and says "baby has to be brave. I have to put it in. Be brave baby." Remember, Henry has Aspergers! Part of his protocol is a small shot in the butt cheek every other night. I've gotten better at doing it, he's gotten braver, but it makes things sound totally sketchy. They aren't.

4. When out in public, Henry sometimes throws a fit and we have to physically pick him up and move him. He's usually screaming, and lately it's been screaming things like "you are hurting me! Stop hurting me!!" I assure you, even when frustrated, we are very gentle. In these situations we are even more gentle, because he's list in an Aspie world and we can't even be genuinely mad at him, just help him through to the other side. Toby mimics. We aren't hurting him either, I swear!

5. They make up words. I got nothing for you there.

6. They might ask you about your boobs. Toby especially. He was really into nursing, that's all I got. I apologize in advance. They mean no harm.

7. They like crashing. If conversation stops mid-sentence and one or both throws himself at you, be tough. Be prepared. They are both heavy, so don't engage in a throwing them in the air game after crashing begins, you'll wreck yourself, I swear.

There are seven million more things, but here's a start.

Oh, and thanks for being my platform to test the new Blogger app - it's not bad!

Love, V

Open Letter to Toby, on this stormy night

Dear Toby,

I know that the sudden thunderstorm that had lasted through the late afternoon into the evening has been different. We don't usually get them for so long, so I can tell you are a little shaken. You are sleeping in a new bed, and you are learning all these new words, and your imagination is running wild. But here's the thing:

Tonight is not the night to spontaneously decide that the sound of thunder is really the sound of a monster coming, and therefore terrifying. It's also not the night to start screaming this at your brother, and freaking him out a little bit (even though he really doesn't think it's a monster coming. He just doesn't like unpredictable, loud sounds, and once he's a little on edge, the sound itself freaks him out. You aren't helping).

Last night you woke us up at midnight, and got papa and Henry up for the day around 4:00am, so while YOU got a nap, no one else did and everyone else could really use a peaceful night. Of sleep. Seriously, sleep. This monster business just will not do.

So, sweet darling, enjoy the slushy sound of the rain, and the cars driving on wet roads, let the thunder rumble through you, relax and go to sleep. Please. Please. Please.

Love and kisses,
Mama

Wordless Wednesday: ASA Conference, Day One.

Pre-Conference workshop (awesome) and bizarr-o Gaylord Palms Hotel. Home for next three days is weird, but filled with interesting information. And monkeys.

Fantastic; I couldn't have said it better, so I steal (with credit)

"I would like to establish a few things about myself: I am not a saint, nor am I unusually patient. In fact, on most days, I would argue that I am decidedly impatient. I have not been "blessed" with my boys because I am in some way more worthy or special than you, and you probably could imagine how I do it every day, you just don't because it makes you uncomfortable."

Heather Newman, in an essay from _My Baby Rides the Short Bus_, an anthology everyone should read because it is awesome.

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Sent from my iPhone.

http://hamstocks.blogspot.com/
http://radicalmamalaw.blogspot.com/

Open letter to Parenthood, the TV show

Dear Parenthood,

It creeps me out that you came along just when you did. I don't really like being so emotionally invested in anything on TV, but the aspergers storyline... It's really so close to home. And so good. And so well done. And all the related issues. Yeah.

Seriously, I hate to be that moved by tv, but you got me. Thanks. (note the complete absence of sarcasm here, I mean it.)

Love, v

Wordless Wednesday: Tony Attwood Workshop

Open Letter Weekend

This open letter may not be of the usual ilk, so bear with me. It's been an exceptionally long week, and long weekend, so I'm not feeling prickly or perky or funny or any of those things that make for a good, fun open letter. I prefer that sort, but tonight you get me as I am, which is this:

And Open Letter to Parents of Neuro Typical Children, and Parents of Children without Major Medical Issues:

I understand. It's a mama law. Where one is standing feels like the clearest place in the world, even when it is difficult. One's own struggle feels like it is the most important, and one's own experience feels like it is somehow both linked to all others and somehow completely unique. I understand the reflex to compare children, to compare experience, to relate the experience that you are hearing from another parent to your own experience as a parent, or to a parent that you know, or the parent you saw on a TV show. I understand.

I beg you to stop.

As the parent of one child with Asperger's Syndrome and hyperlexia, and another who wears contacts and/or glasses due to surgeries in his first few weeks of life to remove congenital cataracts, I plead with you to stop. My struggle with their issues is my own, and I admit that I feel like it's the most important thing in the world. Their struggles (and my own) feel like they are connected to all other children's issues and also unique. Both of these things are true, but we are living a different life that you genuinely can't understand. It's OK. We are OK.

The thing is, it's been a long week. Potty training an almost four year old boy with Asperger's is damn hard. Potty training is never fun, I know. There is SO MUCH poop, why doesn't anyone ever get real about the poop? But here's the thing: even though Henry is very high functioning, it might take years to potty train him. Please, please stop telling me that "you've never seen someone wearing diapers in his dorm room!" because the reality is that there are autistic people who are not toilet trained at sixteen. There is so much neuro-typicality baggage in that one statement that I have heard countless times since Henry turned three, I can hardly unpack all of it. It's time to step back, and just let us work through this one. If your kid is potty trained, I'm so so so glad for you. Please, unless I am asking, don't tell me more.

I sometimes wonder if I am the only mama with an ASD child that feels like the weight of the world makes my connections with other parents far more difficult. I've come across some amazing blogs by mamas of ASD kids recently that have helped me cry, embrace some of the emotional weight I am carrying about, and realize that while isolated in some ways, I'm not alone. My world has shifted, but if you are a mama I love with a neuro-typical child, please understand that I love you to bits and pieces; I just have fewer pieces of myself to hand about right now. I still need you in my life, I still miss you. I'm just juggling so much with therapy and everything else that the thought of trying to explain all of this every time it comes up is, well, overwhelming.

And at the same time, I feel the weight you must when it comes to talking to me. How many times have I thought "How lucky I am to have two beautiful boys, who are doing so well, and who don't have a major medical issue that requires full time nursing care?" or "How lucky I am that my children can move on their own and feed themselves?" I shouldn't feel like my issues are the worst, because I know that they aren't. But, I am every parent. My children are the center of the universe. It's a mama law. It's OK. I understand. I do.

With love and care,
Virginia