Catching Up: January Edition

Well, the IEP is behind us now. That Eligibility Meeting was rough, but the IEP went smoothly and I’m very happy with Bean’s team and confident with the new services and support he will be getting. He’s doing pretty well, and there is a stout safety-net being constructed as we transition him towards middle-school next year. Middle-school is scary enough with a typical kid, contemplating it with a Special Needs child is whole new level… Thankful, once again, for the devoted professionals who spend their careers not just educating these children, but educating others so these kids can have successful lives.

Abby is utterly submersed in Harry Potter right now. Her Evil Uncle Willy gave her a magical, light-up replica of Hermione’s wand for Christmas, and she takes it to bed with her each night, illuminating the pages of her books while she softly chants the spells in Latin. She’s asking to take Latin now in high school. Doesn’t your 3rd graders worry about high school classes?

So last week, she decided she wanted her hair cut like Hermione’s. It was probably a good idea, since her hair is thick, naturally wavy, and was easily grazing the small of her back. This is lovely, except when it’s time to comb it, when she howls like a wildebeest in a mud hole. The girl at the beauty shop did a lovely job, and managed to mimic the hair of Hermione exceptionally well. Here’s a stunning example:

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Er… maybe not.

I went mural-painting for a friend’s daughter, who, coincidentally enough, is also nutballs about Harry Potter. It started out as a request for Quidditch hoops to be painted on the wall in her room, and ended up being something along the lines of this:

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Guess what Abby suddenly wants on the wall in her room? Not the Quidditch hoops, which I thought, frankly, turned out quite nicely:

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I guess the holidays were such a whirlwind I utterly forgot to write about any of it- I think I slapped a few picture up on Instagram or Facebook, but that was pretty much the extent of it. It was a lovely December- we were fortunate enough to have a full house for Christmas, and utterly delighted in having all five kids with us. Jon’s family has some wonderful traditions that we seamlessly incorporated into our own. There were matching pajamas, many knitted socks, piles of cookies and icing, and a bunch of happy kids. It was pretty much the best.

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New Year’s Eve came with far less fanfare. We were down to three kids, and never one for wild shenanigans, we did our Virginia tradition, which is having hot chocolate at the LOVE train, and then snuggling down at home for the remainder of the evening. I like NYE to be quiet, when I can reflect on the year leaving, and imagine hopes and dreams and plans for the coming year. It’s a reflective and quiet time for me, and coupled with sugared up kids who can barely make it to midnight, being home is by far my preference.

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Recipe: Kale & Brussels Sprouts with Vinaigrette

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Vinaigrette:

1/4 cup fresh lemon juice
2 tablespoons Dijon mustard
1 small minced shallot
2 garlic cloves, finely grated
1/4 teaspoon kosher salt
Freshly ground black pepper
1/2 cup extra-virgin olive oil

2 slices bacon
1 large bunch kale, thinly sliced
12 ounces brussels sprouts, thinly sliced
1/4 cup sliced almonds
2 Tbsp fresh parmesan

Make the vinaigrette in a jar with a tightly-fitted lid. Combine all ingredients in the jar, and shake vigorously- the mustard creates an emulsion, and despite it being an acid/oil dressing, it generally will not separate when stored in the refrigerator. This vinaigrette is more than needed for this recipe, and is lovely on salads as well. Set aside to chill.

In a large saute pan, crisp up the two slices of bacon. Remove cooked bacon from pan and drain on paper towels. With the pan still hot and containing the bacon grease, add entire pile of kale and brussels sprouts. It will be a lot for the pan, but they will cook and soften quickly. Toss and turn gently with tongs for 1-2 minutes— you just want it lightly wilted— then remove to a salad bowl. Add the crumbled bacon, almonds, and parmesan cheese, and toss with 2 Tbsp of the prepared vinaigrette.

Prepare to be amazed. I could eat this every day, it’s so ridiculously good.

Learning: Raising a Cook

I’ve been sicIMG_2792k. Like, really sick. Like, sicker than I’ve been in years. My allergies and asthma have been under control for so long, I sometimes forget what it’s like to not be able to breathe- then BAM, I get knocked on my butt by a winter cold that settles in and sets up camp in my lungs. Nebulizer treatments for the first time in years and years, prednisone, antibiotics… oh my. So I’ve been holed up at home, and trying to keep from cracking a rib from coughing. That’s not hyperbole.

Then we got snow. And in a bizarre move that made no sense— perhaps an overcorrection for the endless snow days last year— the district didn’t call off classes. I took one look out the window and told the kids to stay in their jammies. No way was I sending out in that. Then we watched twitter explode as local politicians and school board members pointed their fingers at each other while busses slid off the roads all over the county. We made hot chocolate and watched Firefly.

I did give Jeffrey a job for the day- in the spirit of my trying to learn more, I figured if he was missing a day of school, he could learn something too. I told him he had to find a recipe, read it, figure out if we had the ingredients, and then prepare it. I would be available to consult and answer questions, but I wanted him to be the chef and make the calls.

He camped out with my laptop for a bit, and arrived at The Pioneer Woman’s Perfect Potato Soup. Her recipes are always always always a good bet, and we had almost all of the ingredients. I encouraged him to give it shot. He got to work. I curled up on the couch and tried to hold very still.

Bean and Abby played games and colored and built things with Lego. Jeffrey donned Jon’s new apron and got to work. Yes, my husband has an apron. And his sister made it for him. So much awesome.

This is so much better than being in Social Studies, Mom!

This is so much better than being in Social Studies, Mom!

It took Jeff a while and the kitchen was a disaster when he was done, but the soup came out, just as Ree says, perfectly. He made it with gluten flour so I didn’t taste it, but it got devoured. Bean ate English muffins with peanut butter. Some things are as dependable as the sun rising in the east…

Later that afternoon (it never got above freezing and nothing melted) Abby managed to build a snowman. She named him Tom.

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I’m going back to bed now.

Learning: Korean Cooking

My friend Kristen has a marvelous experiment going on at her blog, Humdrum Stick in the Mud. Every week, she challenges herself to do something outside of her comfort zone, and she documents her experiences, good or bad, feast or fabulous fail. Her writing is quirky and honest and funny, and she inspires me. While I know I’d be setting myself up for failure if I tried to manage this every week, I adore her idea of pushing ourselves outside of what is safe, familiar, and easy for ourselves. We are capable of so much more than we often imagine, and it’s truly only through pushing our boundaries that real growth and opening can occur.

With that in mind, I opted to start small, but still push my comfort level. I wanted to learn to cook a Korean meal. It doesn’t get much further from Korea than this Scottish/German, but I love Korean food, and I was determined to learn some new spices and ingredients that are were utterly foreign to me. Going into a grocery store where you don’t know the ingredients, and can’t read the labels, and where even the produce section is full of things you’ve never seen before can be intimidating. A little research ahead helped a lot, I had my list prepared. I knew I wanted to make a traditional Korean beef bulgogi and bebimbap, with all the traditional little delicious side dishes, known as banchan.

You know what? It went awesome. The internet here is truly the great equalizer, because lacking a Korean grandma to teach me, I found some great websites explaining the spices, the sauces, and how to make the banchan pickles and sauces. At the market, I filled my basket with daikon, fresh kimchee (which I opted to buy there, rather than attempt to make), dried shiitakes, daengjang (a fermented miso-like soybean paste), gojujang (a hot pepper condiment and base for many sauces), and a recipe for ssamjang (a pungent, delicious sauce).

Here is the result:

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When I decided I wanted to learn to cook subcotinental Indian food, the hardest part was learning a new canon of spices and flavor combinations- it was the same with Korean food. The flavors are so distinct, and so amazing- but how to get there is a completely different journey than, say, moving from Italian food to Greek food. The ingredients are sometimes utterly different, and are combined in completely new ways- to a westerner. It was a ton of fun, and it came out utterly delicious. I am emboldened to try this further, and find new recipes and meals on which to subject my family, and which my children will turn up their general collective noses. (Jon and I gorged, Abby loved it, and the boys opted-out. Big surprise.)

Recommended support for learning the basics of Korean cooking at Maangchi, and at Kitchn. What new thing do you want to learn?

The Changing Face of Perfection

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What does it mean to be perfect? As the Christmas cards poured into and eventually overflowed my mailbox this year (the mail lady begrudgingly asked me if I knew everyone in the western hemisphere, as she once again put the mail wagon in park at the curb and made her way to my door with the things she couldn’t stuff in our regulation US mail box. I paid her off in a giant box of hazelnut fudge, so don’t feel too bad for her. We’re pals now.) I would stand and the kitchen counter, hoarding the Good Mail and loving tearing open the thick red, blue, green, and cream paper envelopes, hand addressed, calligraphied, stamped, labeled, whatevered… bringing the faces and tidings of loved ones the world over. Everyone picks their best faces for their cards— and every last one of them was perfect. Utterly perfect in all their beautiful, glorious imperfections.

For our own card, Bean was utterly uncooperative and refused to be in any photo without holding a giant stick, which for that day was his best friend. Don’t ask me. I don’t know. But my gloriously talented friend who makes magic with her camera had a stroke of brilliance when Bean refused to climb down from a giant tree in our front yard. Instead of fighting for some imagined ideal, she recognized the moment, and she had the rest of the family gather around the tree. She got a great shot. (that’s the picture at the bottom of the post that went out with our official Christmas card). But to me, even better than this ‘official’ shot twas this one… laden with story. I love the candid look on Jon’s face, and it’s the only photo where Bean is looking right at the camera- of course when almost no one else was, and we were all laughing. It’s us. Truly us.

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So as I looked over the photos and greetings of my friends, I loved them for their humanity, for their humility, for the beauty of trying to get one, or two, or five, or nine kids to cooperate. For the emotions you can see in some faces, and the mussed cowlick that just wouldn’t lie down, the glares at a brother who just wouldn’t behave, and the resignation from the parents that, well, this is as good as it gets.

It’s true. “Perfect” such as it is, is a myth. I’ve been thinking about this a lot, as I navigate our still new family and the life it holds. Each day, it seems is a flux and flow of beauty, laughter, frustration, patience, silliness, stretching, tears, glee, anger, sorrow, elation- all in microcosms as we move through and around each other, defaulting to “love” and it’s various, changing expressions of what that might mean in any given moment.

It can be learning to stand up for oneself, and doing so with support of parents and siblings. It can be learning to trust one’s own intuition. It can be learning to calm oneself down, and to finally find the deep inner resources you didn’t know you had. It can be flinging cookie dough at your sister and laughing hysterically as you spill cookie sugar all over the table. It can be buying presents for your family for the first time with your own earnings and understanding the deep joy that comes from doing for others. It can be holding a trembling hand and wiping tears that just couldn’t stay inside any longer. It can be stating with exuberance that one has four brothers and sisters, without needing to explain or caveat. It can be using a whole roll of wrapping paper with your brothers and presenting your handiwork with pride. It can be holding a stick in family photos and everyone rolling with it. It can be giggling with a sister far past bedtime, illuminated by the purple tinsel Christmas tree you set up in your own bedroom. It can be reaching out in the darkness to find a near, familiar and ever ready hand to hold yours. It can be finding your own hands, your own self, ready and able to hold you up in ways you never imagined possible.

I don’t know what it is where you are, but I know with certainty that it’s there.

It’s all around you, all around me, all around each of us every day. We just have to notice. There is no perfect moment you have to strive for- you’re living in it today, right this moment, now. This day, this family, these people, near or far, this life, this… this is as good as it gets. Even if life is hard, there is still love, there are still sublime moments to be noticed, found, and paused for…this is perfection. Messy, scowling, earthy, sunlit, beautiful, stained with tears of both pain and joy- encompassing it all. Beautiful perfect imperfection.

Happy New Year.

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Life with Autism: Eligibility Meeting

Bean and his Hiding Hat

Bean. Hiding Hat, Heavy Blanket. Happy.

On Wednesday, we had the triennial Eligibility Meeting with the school district for Bean’s upcoming IEP. For those not as saturated in Special Education speak and acronyms as we are, this means every three years, an entire team tests and reassesses your kid to determine if there is continuing need based on disability for and Individual Education Plan. The Eligibility Meeting is a big deal- present will be your child’s teachers (regular classroom – CEd, special education -SpEd, and autism specialist – AS), the school administrator (usually the principal and vice-principal), a district social worker, a psychologist, the district autism liaison, the district speech and language pathologist – SLP, and the district special education coordinator. Yeah, it’s a big table, and the next three years of your child’s education is contingent on what those reports find.

This is the meeting that sets my emotions and fears on edge. IEP’s are the nuts and bolts of how we’re going to help the kid- the Eligibility Meeting is a panel of experts who have been testing and observing your kid, who have statistics, and percentages and recommendations, all laid bare on multi-page black and white stapled and collated reports. On one had, you want to hear how good your child is doing, and maybe— just maybe— they won’t need services anymore. On the other— it’s terrifying to imagine that support net being taken from your child, if the team sees things differently than you do as a parent.

I wasn’t really worried about Bean’s eligibility. We’re now nine-plus years into this journey, and while he’s doing well in so many areas, autism never goes away. Autism isn’t fixed or cured. Ever.

Understanding this academically, knowing this is a fact physiologically and medically, spending hours and hours in SpEd classes at upper college levels, being informed and well-read and intellectually understanding this concept… doesn’t prepare you for the gut-punch of reality.

Bean has autism. He was diagnosed at two and a half, and immediately started a preschool program with intense early intervention, occupational and physical therapy. He went to that school for children with autism for three years, and was then mainstreamed into a typical classroom with an aide. He’s considered a profound success of early intervention and the pathways that intervention therapy can create in young, plastic brains.

The arcs of his scores and the graphs and bell curves of his mind haven’t changed. Of course he’s more mature now, and his language skills, motor coordination and ability to express himself have all matured with him… but adjusted for his age, the reports continue to tell the same story. He’s brilliant— he scored a perfect 100% on the standardized Virginia state test, and his IQ is…high. But his ability to process sensory information, his ability to communicate and reciprocate, his ability to read social cues and navigate interpersonal relations and cope with emotions are still reproductions of the same bell curves.

Even being well educated, I had somehow hoped, just maybe, there would be a change. This is the bitter part. I know better. I know there isn’t anything wrong with him, and this is just how his brain came. And yet, there in the enormous meeting room, with charts projected on the overhead screen and with a team of teachers and specialists, hot tears sprang to my eyes, and gave lie to the notion that I had fully dealt with this all already. Hope springs eternal, perhaps, but without even knowing it, I had been hoping for the wrong thing. And I know better.

Don’t get me wrong. There is tremendous reason to hope. But the hope lies in educating others about autism. The hope lies in a team of specialists and educators who understand this, and who are willing to go to heroic lengths to make life as good as it can be for a little boy with a different way of interacting with the world. Hope lies in the fact that a boy with autism is understood now to be brilliant, and not a throw-away child. Hope lies in the general growing awareness that autism isn’t a discipline problem or caused by a vaccine or something a mother did while pregnant. Hope lies is there being colleges and companies who see the value in the autistic brain and what it can accomplish. Hope lies in Bean’s bright future, not in spite of his autism, but, just perhaps, because of it.

He doesn’t need to be anything beyond who and what he is. The tears? Those were about me, and my own human fragility and foibles. And that doesn’t help my kid at all. Thank you to all the people out there who devote their lives and educations to Special Education programs and to loving, teaching, and supporting children like Bean.

Wednesday night, he sat first-cello in his 5th grade orchestra concert. He was terrified beforehand, faced his fears, and was jubilant afterwards. Then he came home and put on his silencing ear-muffs, hiding-hat, and heavy blanket. And life goes on.

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