Wednesday, October 12, 2011

Today's meeting with Dr. Dave

We had our first appointment with Dr. Dave in a few months. A lot of summer travel had intruded.

In truth, we were feeling somewhat downcast coming into the meeting. Secondo has become REALLY stubborn lately and it has had Keen and I at the ends of our respective ropes. Kindergarten seemed to be going well, but it's a bit of a black box. The boys get on the bus at 7 a.m. and we pick them up from aftercare sometime after 5. So, we've had none of the direct interaction to which we were accustomed during preschool. Some issues that we thought were resolved had cropped back up. I'd also solo'd for several weeks with the guys which wiped me out.

Dr. Dave spent over half the meeting talk with the guys. I think it's the first time that his interactions with them have taken center stage. I'm amazed that he got Primo to name most of his classmates. I've been so short on time, I tend to give up. Turns out he knew his entire class. Next up was Secondo. He was pretty stubborn about answering questions

So, then we had a chance to chat a bit. There are still some mild delays. (Mild? Woo hoo!!!) Primo tends to perseverate, Secondo still has some echolalia. Secondo is really, sorry, REALLY stubborn, but that's a personality trait rather than a symptom. So, it seems that for the most part we have a couple of guys who are mostly on track. I bought some nice wine to celebrate.

That's not to say they're typical. By no means. But, hey, it's been a month of kindergarten and I've yet to be called to the principal's office.

Yay!

BB

Tuesday, October 11, 2011

Into the Mystery

[So much for blogging more frequently. I got sick, my better half went out of town for a three week assignment, and well, so much for blogging more frequently. This covers some old ground, but perhaps some new as well. It's a decent perspective on 3 1/2 years parenting AA kids.]

Case closed
I was certain in my youth
God knows
Had my scientfiic proof
And in my mind
I thought I saw the truth
I never looked beyond my lenses
Never saw that it was you

I mentioned that I am a father of children with autism in my introductory post. I thought I might write a little about that. Both of my sons have a diagnosis of Pervasive Developmental Disorder – Not Otherwise Specified. PDD NOS is a bit of a mouthful, so I like the new term—atypical autism. AA is a lot easier to say, even if it does give rise to some amusing images.  Having twins meant that one saved the other who then returned the favor. We’ve used Primo and Secondo, characters from the movie Big Night, as their pseudonyms, so I’ll keep to that.

I’m a let them get dirty, don’t sweat it if your child doesn’t hit the milestone from What to Expect kinduva guy. Kids seemed to thrive pre-Dr. Spock, so let them grow at their own pace. Still, at some point you realize on a deep level that something’s not quite right. We brought up our concerns at their 2 year check-up and got some reassurance. To my everlasting shame, I held back on evaluation. Most of the time, it’s not a big deal. That isn’t the case for my sons.

It was in their second year of life when our concerns grew serious. I’m tempted to say it’s like a stomach ache that doesn’t go away. That happened to the husband of a friend of mine. His stomach troubles turned out to be pancreatic cancer. He didn’t make it. Our children are seen at an excellent pediatric practice. There’s a developmental specialist every other Friday. Once those concerns wouldn’t go away, we made an appointment with her. Incidentally, there’s no coverage for that initial screening. $100 is no big deal for us, but it’s gotta be hard for parents who are just getting by. We quickly got the word that he’s delayed and possibly autistic. I can’t say as it was a shock at that moment.

Out of the Question
Can’t catch the wind inside my fist
No, it’s Out of the Question.
Try to trap you and I know I missed
Out of the Question
You’re closer than the air I breathe
but Out of the Question
and Into the Mystery

I do not know if getting a diagnosis four or five months earlier would have made a difference. Here’s two things that a parent of a developmentally delayed child learns quickly. Every second counts. It is important to get therapy yesterday. Hell, do it in six months ago! Here’s the other thing that you’ll learn. You’ll be waiting months for an appointment. Following that initial appointment, we had a few words of advice, whatever books we could find. We were on our own for a few months, but I think they made a difference. The big point was to engage Secondo. Get him out of his world and into ours.

I wound up inventing a game they still love, though it’s harder on my back now. Hug, beso (kiss), blast-off. The idea being that Primo or Secondo runs from the kitchen to me sitting on the sofa. I give him a big hug, then a kiss, then toss him onto the sofa. It’s a lot easier with a 2 year old than a kindergartener! That summer was pretty much a matter of teaching what should come naturally. It felt great to finally be doing something.

We then got in line. We were told to contact Dr. Jean Thomas, who was head of psychiatry at Childrens National Hosptial. Trust me folks, if you’re told by a professional that this is the specialist you should see, you get in line. It doesn’t hurt that Dr. Thomas works at a premier hospital for pediatric care. At one point, I’d actually given up on getting through with them. The gates may not be barred, my friends, but they’re sticky. Fortunately, Dr. Thomas left a message with us and we got through to Intake.  One also leans the magic words to get past the gatekeepers.

My heart
Brings me to my knees
There’s God
Forest before the trees
Move me
Like the wind will stir the leaves
I give way to the Mystery
Like the Branches in the breeze

The initial evaluation was an interesting experience. You have two terrified parents and a clueless toddler. The team consisted of Dr. Thomas, a colleague, and what I presume were a couple of interns. One problem was that we had to sit in the waiting room for a better part of an hour. Secondo wasn’t at his best by then, which may not have been a bad thing. At the end of it all, we got the news that he had autism and to make a follow-up appointment. My wife broke down upon getting the news. Not that she was crushed by the news, but it was almost a relief to finally have it verified. The hospital isn’t that far from where she used to work frequently, so I dropped her and Secondo off on my way back to work. I’m not sure how I felt that day. I knew it would be a long journey, just didn’t know the path.

We had a follow-up appointment a couple of weeks later. Dr. Thomas introduced us to Dr. Bhavin Dave (he’s Indian). Dr. Dave had interned at Kennedy Krieger (another fine institution in this area) and was about to take up the position of head of Pediatric Psychiatry. Here’s a tough choice. You’re directed to this one person. Mind you, we knew relatively little about the developmental specialist. Still, when you’re clueless and told this is THE PERSON, it’s a tough decision. t was a difficult choice at the time, but we figured it’d be good to get in on the ground floor. We were one of his first patients. He’s become a valued family friend. Early on, I think it was more about keeping my wife and I in the game than counseling Secondo.

And I’m Out of the Question
Can’t catch the wind inside my fist
No, it’s Out of the Question.
Try to trap you and I know I missed
Out of the Question.
You’re closer than the air I breathe
but Out of the Question.
and Into the Mystery

In parallel with this track, I learned a lot about the Americans with Disabilities Act. I’m not necessarily a small government guy (big shock there), but I have always been deeply skeptical of a federal role in education. Some of this comes from having a mother in the primary system—she’s a semi retired speech therapist. It seemed like massive amounts of paperwork for modest amounts of funding. Education has always seemed like a local responsibility to me.

Well, my sons would not be thriving in kindergarten were it not for federal interference in education. To be exact, something called Child Find. It’s a system designed to detect developmentally delayed children and get them services so that they can thrive. My wife and I are pretty well prepared for educating kids. I have a BA in Physics and Mathematics and a PhD in Condensed Matter Physics . My wife actually trained for elementary education before finding her calling as an interpreter. [Bachelor’s at Redmond in Education and a Masters in Translation and Interpretation from the Monterey Institute for International Studies). I’m not throwing the degrees out there to brag. Rather to note that we’re two highly educated parents who are well prepared for the task of getting our children ready. And we didn’t have a fucking clue what we were getting into.

I think we could have cobbled together something, but it wouldn’t have been close to what the “system” did for them. I’m overwhelmed by the care given to my sons. And yeah, it’s because of that interfering federal government. We probably could have worked out something. We both make good money and probably afford specialized schooling. Providing we had a clue what to get. My best friend at work has a son on the spectrum. They didn’t realize his needs until he was hitting kindergarten and dealt with a serious quack. Then I think about parents of delayed kids who couldn’t afford expensive services and specialized education. There was a story in the Post a few years about a woman whose son was “cured” of autism. They went through enormous stress and bankruptcy. How the hell could a family of limited means thread this gauntlet?

OK. End of political sermon. This is one case where I came in general agreement with small government conservatives. Then I saw what effective government could do. It opened my eyes.

Truth is there for finding
But the logic that’s involved.
It’s a mystery unwinding
Not a problem to be solved

I have twin sons. To my thinking, they saved each other. We picked up on Secondo’s delays a lot faster because of direct comparison with Primo. At the point when Primo’s language took off, Secondo seemed to plateau. We pushed for an evaluation earlier than I think we would have had it not been for the comparison. Primo helped to save Secondo. Secondo later returned the favor.

Coming into their second year of life, we had a family friend caring for them in our home. We got Secondo into a pre-K program for developmentally delayed children. It seemed unfair for Primo to stay at home on his own, so we enrolled him in the neighborhood preschool. I think it was two or three days a week, several days a week.

Now, Primo is brilliant. I know it’s natural for a dad to brag, but I don’t know of many kindergarteners that understand exponents. [I’m not kidding. He wrote 6 squared and I assumed that he’d seen it somewhere. He informed me that it meant 6 times 6. OMG.] He was an early reader and has been obsessed with symbols from an early age. We assumed that we had a very bright boy, clueless to the fact that wasn’t all that was going on.

In the first week at the neighborhood preschool, the teacher had concerns. Primo was the old child in his class and was totally freaked out. He’d obsess on the calendar. He wouldn’t join in circle time. He eventually got to the point where he would be willing to sit on a little chair outside the circle. By now we were “pros” at the system and so called Child Find. The plan was that he would continue at the neighborhood preschool and go to the special needs program on other days of the week.

I got a call in August two years ago. They asked why we were going with the morning program. It was mainly to try and match the schedules of the special needs program and the regular preschool I was told that Secondo could continue with his previous teacher (yay!) and asked if we’d be interested in enrolling Primo in a new class that would be half developmentally delayed children and half “peer models”. Yay!!!!!

Out of the Question
The wind inside my fist
No, it’s out of the Question.
Try to trap you and I know I missed
Out of the Question.
You’re closer than the air I breathe
But out of the Question.
And Into the Mystery

Since then, Primo spent 2 years in Bridget Mancke’s class and Secondo joined him the following year. It is overwhelming to me how far they have come. It is not easy raising kids with autism. I want to post about that at a later date. I figured that the story of getting into the system was enough for one.

My kids are in kindergarten now and I think it’s going OK. We’ve had some relapses related to potty training, but I think we’ve got it under control. Other matters are really tough right now. Still, they’re in regular classes and thriving. I’ll take it for now and tell you about day to day at a later date.

Oh yeah, you might be wondering why I keep lapsing into verse. The lyrics are from a song by David Wilcox, Into the Mystery. I was introduced to David Wilcox by my wife almost ten years ago. We’ve seen him perform three or four times. I was searching for the right metaphor and then I realized that David had it right ten years ago. I’m almost 6 years Into the Mystery. It’s a rewarding journey, but oh can it be tought.

BB

Sunday, August 21, 2011

What

I'm beginning to learn what it means to have a good blog. It's pretty much the same thing as being a good writer. A friend of mine has a great blog (snickolett). Mind you, losing your husband to pancreatic cancer while conceiving and raising twins is great material. I don't begrudge her that and wish she'd had a long, well-deserved life with her husband.

I haven't added an entry in few months for a variety of reasons. I didn't have the time to talk about my sons' transition to kindergarten. Their IEP meetings at the new school were revealing. Overall, it was a good experience. In the case of Secondo, the meeting seemed pretty straightforward. We got a formal diagnosis of autism (seems that the fact that he's being counseled by the director of the children's psychiatric program at Childrens National Medical Center doesn't count). The speech therapist at their outgoing school proved to be a surprisingly strong advocate.

Primo was trickier. He's brilliant. Sorry folks, sometimes a daddy's got to brag. I taught myself multiplication at the tail end of second grade (it was in a part of the book after what we were supposed to be doing). Primo has picked it up at the age of 5.The thing is that his intelligence allows him to mask his needs. The speech therapist picked up on this, which is amazing given that she's never met him. Primo is engaging in some higher levels of social speech without having picked up the foundations. So, his speech is "weird". She gave us a clue as to why, more than anything I've received before.

Overall, we're delighted. The general ed teachers who attended the meetings were, to be charitable, unimpressive. I'll chalk it up to the fact that a general ed teacher has to attend the meeting and so it's one of those meetings you have to be at, but have to sit there nodding and pretending to be interested. Let's see how they do with my guys.

Back to the start of the post. A blog should be honest. Brutally so if necessary, but never with cruelty. I've held back for a variety of reasons and so this blog hasn't been what it could be. I've been working on a research paper that means everything to me. I put my heart and soul into it (yes, this happens even when you're writing about transient terahertz spectroscopy). If this blog is to mean something, I need to put the same effort and honesty into it. So, I'll be writing more often and self-editing less.

BB

Saturday, June 25, 2011

Pura Vida

Literally, it means "pure life" in Spanish. It's a catch all phrase in Costa Rica that has all the versatility of "cheers" in the UK and Ireland and "aloha" in Hawaii. Hi, thanks, good on 'ya (having never been to Australia, I'll have to trust Pixar on that one).

Ever since I was lucky enough to have a Tica come into my life, I was lucky enough to be exposed to Costa Rica many times. I wanted to express that in some way, which in Virginia means getting personalized license plates. We evidently lead the nation in the percentage of drivers who can't really get into driving a car labeled X37 2LZ5. For our "new" car, a 2005 RAV4 I bought from my parents, I couldn't resist getting a personalized license plate. One can get up to 7 characters, 6 on some plates. Any variation eliminating one letter sounded odd. Purivia must be a new bottled water. Pravida a Russian newsletter. Puravda the car used to deliver the newsletter. Or maybe the other way around.

Then it hit me. PURA VA. We lives in Virginia, so it's shorthand for Pure Virginia. Anyone who knows Ticos should get the reference. I like the way it works as my two gemelos are Virginians by birth, but I hope will carry a lot of their Tico ancestry with them.

BB

Friday, June 10, 2011

Sic Transit Gloria

It took me awhile to warm to living in Washington, DC. A good deal of that was simply that I'd moved him from a place that fit me like a glove. Boston had everything I loved about living in England, but was back home in the U.S. It didn't hurt to have my first really good paying job of my life and be falling in love with my future wife. It is a great city for dating.

The Metro, for all its next century feel, doesn't have the scope and integration of the T. DC tended to do high end restaurants and inexpensive eateries well. The midrange less so. Bit by bit, I got to know the place. I've got my favorite restaurants. The schools have been incredible for my kids. We're in a good neighborhood.

There is one thing I don't like about DC that will probably never change. That is to say, change. Things just don't seem to last here. We live in a neighborhood of townhouses. There are eight on our block. We purchased ours six years ago. A couple we'd gotten to know was reassigned to Austria (he worked for State, I think. Maybe the military.) The buyer was a staffer for a senator of some recent repute and we've gotten to know and like her. The couple next door had a baby. Then, she got laid off and as he can work remotely, they moved back to Pennsylvania. Then the two units next to use went up on the market and sold within weeks. The new neighbors seem nice, so we look forward to getting to know them. It is remarkable to me that in six short years, we are now the senior owners on our block.

It's change, but seems natural and we get to know interesting people. Then there's change that sucks. My favorite hangout is a place in Alexandria called Food Matters. The owners had worked at various DC restaurants and set up their own place in Cameron Station. I always liked the place and frequently drop by for a glass of wine after work. The food is good and they emphasize local, fresh ingredients. We haven't had dinner there that often, but I always looked forward to becoming a regular once the boys got a little older and we could settle down. I just found out it's closing. I think it's a case of the right concept, but a difficult location.

Committing to a place in DC almost seems like committing to a new TV show. It might disappear in a few seasons with a whole bunch of unresolved plot lines. Ah well. I'll be on the hunt again.

My best to the staff of Food Matters on a great few years. You mattered.

BB

Sunday, May 15, 2011

Social Time

I had a little solo time with Secondo lsat Sunday. He'd slept in late--really late--and we thought that might indicate getting sick. So, Keen and Primo went off to church and I stayed at home with Secondo. As it turns out, he was right as rain. Just decided to sleep in three hours later than usual. Sheesh.

I had brief notions of catching up as he woke up about ten minutes before services were due to start. This was a pure fantasy as it took him a little while to get going. I eventually decided to take him out on a walk. We wandered by a play area behind our local church and I thought to take him over. There was another little boy there.

Secondo and "Alex" proceded to play undirected for about half an hour. They built a web of sticks to help out a spider that Alex spotted. The amazing aspect of this to me is that this was way beyond anything in Secondo's IEP. I think it calls for two or three exchanges, facilitated by a prompt. Half an hour of unfacilitated play seems like graduate studies to me.

Way to go Secondo!

BB

Korea/Kansas fusion

I picked up a round eye roast the other day. I planned to grind it and make a Bolognese sauce. I typically use a chuck roast, but was feeling cheap. Since it cooks for four hours or more, I figured it wouldn't make that much of a difference. I don't have any Italian blood in me, so there's no great grandmother spinning in her grave. Heck, my Scandinavian and Irish forebears might be nodding in approval. As it happens, I had some frozen ground chuck in the freezer and decided to use that instead.

A mild PSA. If you have a food processor, don't buy ground meat at the grocery store. Take some chuck and cut it into chunks. Trim off the bigger chunks of fat (see, it's healthier already!) and process a few times. It works great! We have a stand mixer with a grinder attachment, so I use that instead. It's better, cheaper, and you know what meat you're getting. Also, ever notice those news stories about e Coli contamination? If it's related to meat, it seems like 90% of the stories involve ground meat. Save yourself some worry and grind it yourself.

So, here I am with a roast that needs cooking. Pot roast calls as round eye is a relatively cheap cut that benefits from braising. Still, I wanted to try something a little different. I've gotten into making bulgogi--a Korean dish that literally means fire meat. It calls for slicing meat thinly (flap or flank are great for this), marinating for a few hours, and quickly cooking. We love the flavors and it's a flexible dish. The thought occurred to me that shifting the marinade a bit would make a great pot roast.

I used a kitchen sink worth of various Asian liquids we keep around. Soy and sesame oil are traditional for bulgogi. Also sugar. I like fish sauce and rice wine vinegar, so tossed those in. The mirin adds some sweetness that you need for bulgogi. As this was going to be a pot roast, I used a cup of red wine (Conco & Toro's Frontera brand of cab/merlot blend) and a can of beef stock. OK. Here we go.

Ingredients

2 - 3 lb. roast. I'm a big fan of chuck, but there's lots of options
1 lg. onion, coarsely chopped
[add whatever else you like for pot roast]

Marinade - liquid

1/2 cup soy sauce
1/4 cup rice wine vinegar
1/4 cup mirin (or more vinegar and kick up the sugar)
1/4 cup fish sauce
1 cup dry red wine
1 can beef stock

Marinade - spices and herbs

1/4 cup brown sugar
1 - 2 tablespoons hot sauce (I'd go for Sriracha or a similar chili sauce)
Stalks from one bunch of cilantro, chopped
One bunch of scallions, chopped
1 - 2 tablespoons of chopped ginger (I used ginger paste you can get in Indian grocery stores)
1 - 2 tablespoons chopped/mashed garlic
Fresh ground pepper as you like.
NO SALT. With soy and fish sauce, this dish has all the sodium it needs.

Combine all the ingredients for the marinade and plot the roast in. Let it sit for at least an hour in the refrigerator or as long as you'd like. It won't pick up as much salt as for thinly sliced meat, so an overnight marinade is fine. When you're ready to cook, take the beef out of the marinade and cover with sesame oil. It helps to tie it with twine (and I'm a big fan of hemp twine).

OK. Now for some fun. Heat your oven to 300 degrees or so. Meanwhile, put a heavy bottomed pan or dutch oven over medium heat. Add sufficient sesame oil to coat the bottom of the pan. When the oil is beginning to smoke, add the roast to the pan. Brown on all sides. You're developing flavor here! Take the roast out of the pan when it is browned on all sides and place it on a cutting board. Add the onions and other veg. to the pan and brown. Return the roast to the pan and add the marinade. Bring to a moderate boil, cover, and put into the oven.

Have a couple of beers or some wine. That's as far as I've gotten. The roast is in the oven right now. I did taste the marinade and it's spectacular. Pot roast with an Asian twist. This one will be a keeper.

BB