Stumbled Upon

Things have been crazy. I have ideas about genuine posts brewing, and will get back eventually, when I have a few minutes to rub together. I am creating things, though, which is important because it's awesome and because the holidays approach... And we are forever busy shuttling from one place to another, doing laundry, and trying to become experts in, well, Holland.

I found this today, and it so encapsulated things I've been thinking I wanted to share it. Mostly because it's more clear than I can be, but also because it's a little meaty at this moment when I just don't have the time and energy to bring the writing A-game myself.

Love.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

All Too Typical

This morning:

While walking by Henry's room to go make breakfast, I glance in, see Henry in underpants and a shirt reading a book on the floor. I also think I see poop squished in the carpet.

Me: Oh my God! Is that poop on the floor behind you?!?

Henry: (not even looking up) What? Where?

Me: (walking into the room, looking closer) There, behind you, in the rug...(sigh of relief) Oh, never mind, it's just a letter.

Henry: (turning around, looking at the floor, searching) What letter is it?

Me: (still just relieved it's not poop) I think it's the letter J.

Henry: oooh! OK. (goes back to reading, because J is not a favorite letter)

As I walk out, I hear Bret laughing, and only then realize that this scenario is kind of crazy. Well, crazy anywhere but our house.

Loving This Today

My grandmother Thea made this for my mom when I was born, and I've had it in my laundry room since Henry was born. I love it. I wish I'd spent even less time stressing out and more time just rocking my babies. Yes, even more.

I'm learning (well, teaching myself) how to embroider right now, so at the moment I am smitten with the beautiful stitching my grandmother did here. I'm wishing I spent more of my younger days hanging out in her craft room learning needlework, because she is so talented. She taught me to knit, and it's taken years to get respectable. Now that I'm doing needlework, her first love, I'm really wishing I had the time in Vero to learn from her - all the time, not just visits!

So, today I am loving this. For everything.

Toby

Celebrating Autumn

The weather has gotten marginally cooler. The humidity has dropped below 80%. Early morning bike rides call for a light sweater. Welcome autumn! Here's a little celebration ring just for you.

I made something, on Friday.

These are custom magic pillows for two magic little ladies. Can't wait to deliver to the person who ordered them! Love.

Week in Review (crafts)

I finished knitting 2 dishtowels/washcloths, three magic pillows, a celebration ring, and got Toby excited about knitting. All in all, a win for the week. Now on to the weekend, for jam-making, more magic pillows, experimenting with knitting socks, and dinner party with Henry's bestie and family. And welcoming fall weather, finally! Score.

Celebration! Celebration Ring, that is...

Magic Pillows

I made these in a couple of nights. Hand-sewing is awesomesauce. These little pillows cure all aches, because they are filled with magic beans. Henry's symbol at school is the owl, and Toby requested a gnome. I'm pleased as punch with the outcomes!

At what age do I have a moral obligation to make sure he's wearing pants when we go out? Because I don't, kind of a lot.

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.

Pinterested?

While it's doubtful that I am ahead of the curve on these sorts of things, I have found and LOVE Pinterest. Mostly I love it because I can save all my "to do" and "i love that!" links in a place that is not my bookmark bar, but I also love that I can SHARE these little gems with others. Not that I am finding gold from places others have not looked; I assure you, I'm getting most of my pins from craftgawker and that sort of thing. But it's great fun, nonetheless.

I only have one "follower," so it's not as if I am trend-setting; however, I like to think that with time I will stop having five zillion bookmarks in my "craft projects" and "inspiration" Firefox folders, and will use the handy thumbnails and descriptions on my personal, virtual Pinboard for good. And perhaps, should you wind up on the Pinterest, you'll follow me and get some inspiration too.

Just a thought.

Mama Monday

I was going to write a really meaty post about balancing parenting children with special needs, and attempting to simplify schedules and life while also getting kidlets all the therapy they can possibly need... But then Toby got kicked out of naptime at school (awesome phone call) and I can barely keep thoughts in my head. Sleepy two ear olds are a challenge. Oh, and two little kids were mean to Henry at school (creeps) and I miscalculated my knitting night so I don't get to do that until next week. I also didn't manage to get dinner started on time (soup from scratch is easy but takes time) so what are we eating for dinner? You tell me.

Good things: tomorrow I have a date with my knitting basket and the new Helen Mirren thriller, Henry and I have hyperbaric, my sitter is here all day, including cleaning hours, and we are headed to Vero Beach for the weekend on Thursday morning.

So, now I just need to do laundry and pack, make a cleaning checklist, figure out how to make my 2 year old not a terror (and also make him a child who naps!), and figure out dinner. Seriously, what's for dinner?

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

Evil Witch of the East Coffee Cake

Every now and then you crave something sweet, absurdly easy, terrible for you, but really delightfully delicious.  This cake is great warm from the oven, and keeps beautifully, for days in the fridge. It's great for a completely unhealthy breakfast, tea and coffee treat, or as full-on dessert. It's a little trashy though. I stole the recipe from my ex-boyfriend's mother, who was a wretched witch, trust me.

I was going to make this coffee cake when we were visiting my brother and his wife last weekend, but due to those little "sugar free" pudding packets, my plans were thwarted. No, this recipe requires full sugar, instant pudding, so don't go trying to be healthy. This is EVIL cake. Be careful shopping - the sugar free and "cook to serve" packets will try to trick you. I made it this week after spending spending an inordinate amount of time looking at the pudding shelf in the grocery store.



Evil Witch of the East Coffee Cake*

Cake:
1 box yellow cake mix (go with whatever is the cheapest)
1 small box instant vanilla pudding mix
1 small box instant butterscotch pudding mix
4 eggs
1 cup oil
1 cup water

Topping:
1 cup brown sugar
1.5 cups chopped walnuts
1-3 tsp cinnamon

Preheat oven to 350. Mix topping, using more or less of the three ingredients to taste (it's just supposed to be a yummy mix, use lots of what you like). Set aside topping.

Mix up all cake ingredients until well-combined. Pour half the batter into an ungreased 9x13" pan. Crumble half the topping mix over the top. Pour the rest of the batter out on top, as evenly as you can (it will clump, that's OK - just try to get some mostly all over). Crumble remaining topping over the top.

Pop that evil beast into the oven for 10 minutes, then turn down the heat to 325 and let her cook another 35 minutes more.

*To make it Evil Witch of the West Cake, like I did for the photo below, substitute pistachio pudding for butterscotch. Green and deliciously evil.

 

Summer Vacation

Remember that aspirational blog schedule? Yeah, me either.

I'm on summer vacation. Of course, by summer vacation I mean frantic driving about town to an absurd number of appointments, juggling kid schedules that keep changing, and trying to do all of this in the air conditioning because we live in a Florida swamp.

But seriously, I have actually been meeting up with mamas for knitting, and doing things like canning and baking and yogurt making. We are making fresh peach vodka (hello!) and some fun and fancy meals that I have pleased me. We've made pickles and jam and bread galore, and I am shopping as much as possible for whole foods and raw foods at the co-op, or bartering with friends, and things are kind of awesome. We are finally (finally!) moving into some real, actual, working progress in the remodel arena, and planning a yard sale this weekend. Seriously, I think we are getting life together, bit by bit, so the blog has been neglected.

But here are some fun pictures of my canning escapades last weekend. We got some new equipment, which is lovely, and I salvaged some old equipment from my mother's days of canning madness. This year I got started late, so I'm making jam from fresh-frozen berries we picked, hulled, and froze months ago. Fortunately, things are working OK. Henry. Maya, and Lantz have all, so far, given it seals of approval, and that's a tough crowd.

I'll be back on the blogging track after Labor Day. We head out to Alabama for Labor Day weekend to visit my brother and his lovely wife in Birmingham, and when we return, both boys will be in preschool. So, even though the whole construction thing will be stressing me out and all that, I have a feeling I will finally have some time to sit, and think, and write a few things down. Possibly even not-kid-related things. Jeezey creezey.

So canning fun - strawberry jam - let me know if you want some, I need to share and keep rolling it out, we have lots of frozen berries!

Open Letter to my label maker

Dear Label Maker,
When I rescued you from the trash at my mom's house I never imagined the live affair we would have. You had me at "this is a test" and I can't imagine life without you.
I have to warn you, Bret knows. But I suspect he will let it slide and we can continue to make beautiful informational stickers together (presuming I can still find replacement tape and toner, but I can't even begin to contemplate a world without you, so let's put that aside!)
Love, v

Weekend plans

Saturday:
Movies and dinner with kids (check!)
Cleaning around the house
Mall shopping and returning and playing and lunching
Mad Men (three episodes, oh my)

Sunday:
Canning (jam)
Cooking (soup)
Brewing (beer)
Kombucha (tasty and healthy grossness)
Baking bread
Installing shelves
Setting up new printer
Planning for first day of school for Toby
Oh, and mama gets to sleep in (ROCK!!!!!!)

Yeah, it's a good weekend. We will also do plenty of playing and creating and running and sweating, but you know, goals serve lists far better than fun.

Love, V

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Sent from my iPhone.

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

I want to go there. Now.

Diagnosis: Tendonitis. Boo.