Interaction

With winter coming, our summer routine of parks every day will be coming to an end and yesterday we headed to the children's museum. We've been going to various children's museums regularly since moving to the northwest, they're a real sanity saver during the long wet winter when playgrounds are miserable. The more I learn about autism though, the more surprised I am that Merry has very little trouble with what must be a crazy sensory overload situation.

Merry loves to visit the museums and handles the noise and bustle very well, but I suspect he copes by he going into heavy focus mode. He'll pick one activity (trains are a big favorite) and disappear into his own little world. Good luck trying to suggest a new activity or area, or trying to introduce interactive play--this boy is gonna do his own thing.

Yesterday while he was running excited, overjoyed laps around the electric train display Merry picked up a couple of companions:  a little boy in a blue shirt who was probably a bit older than he was and a girl who was probably a bit younger. I don't think Merry ever spoke to them or even looked directly at them but they were all having fun watching the trains, pushing the buttons and running around.

Then Blue Shirt decided he wanted to play in a different room--one that projects the kids' movement onto a colorful psychedelic screen. It had never been a hit with Merry (visual overload, much?) but Blue Shirt wanted his new friends to come along. He asked Merry repeatedly, tugged on his sleeves, very persistent. But it was a no go. Eventually Merry ran off to the airplane exhibit and the other two followed him. It was both heartwarming and worrying to watch them follow Merry's lead through several different exhibits, join him in the cockpit of the airplane to push buttons, run through the farmyard and toss beanbags around. But although I think Merry enjoyed the company, I didn't see him actually interact with the other kids. When they got distracted and stopped following him around, he didn't turn to rejoin whatever new play they'd discovered or attempt to keep up the following game.

There are several areas where I'm confident that Merry's problems are temporary, areas that simply need more work and support, but this social oblivion is a different beast. I've heard it called the root of autism, and I suspect going forward that it's going to be our biggest challenge.

Small Happy Places

Thanks to God's grace disguised as coincidence, we live close enough to Sam's preschool to walk him to school in the mornings. I absolutely love this; the exercise and the chance to get outdoors is so good for all of us.

As the year goes by we can see the season's changes in front gardens, field and roadside that become familiar as beloved faces over time. There's one tree in particular that I notice every day after the droppoff on the way back home. It's a maple that overhangs a border wall, giving me a quick glimpse under its canopy of elegant spreading branches dressed in spots of moss. Glowing green or gold, shining with rain or boldly winter bare, it's a small dose of beauty that warms the heart.

Maybe I associate it with the peaceful glow in the small accomplishment of getting my boy to school, or maybe the familiar but unlooked-for* beauty turns my mind outward to gratitude, but either way it's a happy place.

*and now that I've put this all into words, it'll be harder to keep it this way :-p

"Say your prayers in a garden early, ignoring steadfastly the dew, the birds and the flowers, and you will come away overwhelmed by its freshness and joy; go there in order to be overwhelmed and, after a certain age, nine times out of ten nothing will happen to you."
-- C.S. Lewis, The Four Loves

Vancouver Adventures

Vancouver BC--downtown tourism and outdoor beauty at one go! We had a wonderful trip over Labor Day weekend, at once too short and just long enough. I would have loved to stay longer, but traveling with the kiddos is exhausting and we needed the two days to recover that we included in our vacation planning.

We decided to ride the train instead of driving; none of us had ever traveled by Amtrak before and Merry loves trains. It was a fun experiment: the scenery was beautiful, the train was comfortable and convenient, the Gaffer enjoyed not doing most of the driving, and Merry was on cloud nine because train! and tunnels! There were a few drawbacks though--Pippin is at the age where he wants to crawl around all the time so juggling him for 4 hours each way was wearing for all of us, while in the car he'd be securely strapped in place. Going by train also meant relying on public transit; not a huge problem, especially since Vancouver has a very nice system, but it did impose a few limitations. Next time we'll probably take the minivan, but we'll def keep Amtrak in mind for future travels.

Once we made it to town, it was basically all Stanley Park. This huge city park is right next to downtown, and offers gardens, playgrounds, beaches, a miniature train ride (moar trains!), aquarium, hiking, and probably more that we didn't have time to discover. I loved being able to stay in the elegant downtown area with comfy hotel (even though we didn't get to take advantage of the nicer restaurants *sniff*) and then take a short bus trip across to the beautiful park.

Here's some tips and recommendations:

• Second Beach. Beautiful, tons to do! There's a playground, the beach, and an outdoor heated "pool" that's more like a small water park.
• White Spot restaurant. Family friendly, gfcf options, tasty food!
• Bella Gelateria. Amazing gelato! We Yelped the closest gelato/ice cream spot and I popped out after the boys were asleep, planning to get a quick treat to bring back to the hotel room. But apparently it's a Really Big Deal and I ended up spending half an hour in line before triumphantly bringing home a bowl of Texas pecan with sour cherries and salted chocolate. Totally worth it! Dairy free options were available, but we never made it back while Merry was awake because we're terrible or something.
• DeDutch. Delicious breakfast, gfcf options, and the location near the convention center looks over Vancouver Harbor.

GFCF Chocolate Chip Cookies

The first batch of GFCF chocolate chip cookies I made were a bit of a disappointment. Merry and the Gaffer had no complaints, but I thought they were greasy, flat, slightly gritty and had a starchy taste. But with help from America's Test Kitchen I was able to tweak the recipe and the second batch was a huge improvement. Excellent structure and texture, soft and chewy, wonderful chocolatey goodness. If you didn't know ahead of time, you'd never guess they were GFCF. Below the recipe I give a blow-by-blow of my changes.

GFCF Chocolate Chip Cookies
Adapted from The How Can It Be Gluten Free Cookbook.

8 oz (1 3/4 c) GF Flour Blend (I like Pamela's or King Aurthur)
1 tsp baking soda
3/4 tsp xantham gum (1/2 tsp if your flour blend has xantham gum in it already)
1/2 tsp salt
3 tbs canola oil
5 tbs coconut oil, melted
3/4 c light brown sugar
1/3 c granulated sugar
1 egg
2 tbs almond or coconut milk
1 tbs vanilla extract (slightly less if using vanilla-flavored milk)
1 c chocolate chips
1/2 c toasted pecans (optional)

Whisk flour blend, baking soda, xantham gum and salt together, set aside. Whisk oils and sugars until smooth, then whisk in egg, milk and vanilla until smooth. Stir in flour mixture with rubber spatula and mix until a soft homogeneous dough forms (dough will be sticky). Fold in chocolate chips and pecans, if using. Cover bowl with plastic wrap and rest for 60 minutes.

Line baking sheets with parchment paper, drop about 1-2 tbs of dough 2 inches apart. Bake until cookies are golden brown, with set edges and soft centers, 11-13 minutes. Rotate the sheet halfway through baking.

GFCF cookies do not last as long as regular homemade cookies, I usually freeze most of the batch and leave a few out to eat that day. You can also freeze the dough as individual cookie lumps and bake a few at a time, straight out of the freezer (increase baking time by 2-5 min).

• My original alterations were to substitute refined coconut oil for butter, almond milk for regular milk, and Namaste Foods GF flour blend instead of the recommended ATK flour blend.
• To correct the greasiness I thought about cutting back on the amount of fat, but I found that in other recipes ATK calls for a combination of butter and vegetable oil to prevent greasiness, so I tried a combination of coconut oil and canola oil.*
• The purpose of the milk in the original recipe is simply to provide more moisture, so I kept the almond milk as it was.
• ATK recommends a 30 minute resting period for the dough before baking in order to let it hydrate and stiffen in order to prevent grittiness and give the cookies better structure. I noticed that the last tray of my first batch turned out the best, and the dough had been sitting considerably longer while the other cookies baked, so for the next batch I increased the rest time to 1 hour.
• Because the flour blend I was using already included xantham gum, I decreased the amount in the recipe from 3/4 to 1/2 a teaspoon. No idea what happens when you get too much xantham gum, but I assume the minimum amount necessary for structure is best.

*I'm slightly confused as to why this worked. ATK's scientific explanation for the difference in baking with butter vs vegetable oil is that butter gives baked goods a greasier feel because butter's combination of fat and water does not combine evenly with flour proteins but remains in small clumps and pools. This problem is worse with GF flours because of the lower protein content. Oil, on the other hand, has no water and combines with flour particles much more evenly. There shouldn't be a difference between water content for coconut oil and canola oil, so I'm wondering if saturated vs unsaturated fats are important too.

GFCF Baking

I absolutely love to bake. Cookies, bread, muffins, pancakes, biscuits, popovers, anything and everything. So at the prospect of going GFCF it was only a matter of when, not if, I would figure out how to adjust making my favorites.

I knew from browsing Pinterest that the internet was a great source for ideas and recipes of various and unknown quality, but when the Gaffer found The How Can it Be Gluten Free Cookbook from America's Test Kitchen it was the key to cracking the code. I fell in love with the Best Recipe series from ATK several years ago because of their analytical, scientific approach to kitchen alchemy, and sure enough their GF cookbook is exactly what you need for a strong start in GFCF baking.

The first section provides the basic science of baking with gluten, the challenges presented in removing it from traditional recipes, and their solutions. There's tips for adjusting your existing recipes, analysis and reviews of commercial GF flour blends, and because ATK thought they could do better than any of them, a recipe for blending your own mix. Then there's reviews of various GF sandwich bread, pastas and an overview of the various ingredients you might need on hand for GF cooking and baking.  What's with all the different flours? And what in the world are xantham gum and pysllium husk? Your answers are here.

Then they get into the recipes. I've had excellent results with their peanut butter cookies and banana bread so far, just substituting coconut oil for butter to make them caesin free as well.

It is important to note that it's not a GFCF cookbook, and dairy ingredients are present in most recipes. The authors dedicate one page to suggestions for other dietary restrictions including dairy, but they fail to mention substituting coconut oil for butter, which has worked really well for me. Almond and coconut milk have worked so far, but I haven't even tried to work out a cheese substitute yet. Kind of suspect there isn't a good one, unfortunately.

This weekend I had slightly less success with their chocolate chip cookies and blueberry muffins. Both were tasty, but not quite excellent. I've been using a different flour blend and had to experiment with non-dairy yogurt, so I suspect one or two more tries will give better results.

Overall, I highly recommend The How Can it Be Gluten Free Cookbook. I'll try to post occasionally with which recipes work and which ones require a little more tweaking.

Half a Year!

Pippin is 6 months now, and I'm floored by how quickly the time has flown. Merry's first six months seemed to creep by in a happy baby daze, but although the joy has been no less intense, the time has gone so much faster! Now that this thought is actually verbalized, I can see how obvious a revelation it is, (more kids to care for = time moving faster) but it's a side effect of kid #2 that I hadn't considered before.

Also like every other parent in the history of forever, I spend too much time comparing my second child with my first. But in any family with a kid on the spectrum, the analysis of that new baby has a sharper, more desperate and anxious note. The statistics are scary, and siblings of kids with ASD have a higher chance of being on the spectrum; I've seen as high as 1 in 5. 

From the very beginning, Pippin has been a reassuring baby. He smiled and laughed much earlier than Merry, who hit those milestones a bit later but not quite in the "talk to your doctor" range. Pip makes excellent eye contact, and although he isn't babbling yet, he's plenty talkative in early baby coos, ahhhs, and shrieks. Shrieks are a fun learning phase, aren't they? Baby's all "Ohhh, what a fun sound I've discovered, and look how everyone jumps when I make it!"

So I was feeling much better about the ASD cloud over our heads when this article came out. It's an excellent, moving piece on autism, about a boy and his family who learned how to connect and communicate through Disney movies. But it was also the first time I'd heard of regressive autism, how normally developing children can lose the ability to talk or make eye contact, changing from a bright, talkative toddler to become withdrawn, anxious, and uncommunicative. 

The return of the fear was a punch to the gut. Not out of the woods after all! Three years of watching, comparing, knowing that the sword is hanging over our heads.

Merry never went through a period of regression, his social and communication skills simply stopped following the normal development. And the fear that lurks in the background isn't so much that Pip will follow Merry's development. It's the deeper more ancient fear of the changeling, of autism spiriting away this beautiful happy baby and replacing him with a stranger.

For now I try not to focus on it, not to dwell. There's too much to enjoy, too many happy baby giggles, sweet smiles and chubby legs to kiss. Too many adorable brother hugs, shared laughter and peekaboos to let future troubles cast shadows that may never be. 

Terminology

Even though ASD wasn't on our radar yet, I heard about the combination of Asperger's and autism into a single diagnosis. It made a lot of sense--the spectrum designation is a great way to describe the various forms and severity of autistic symptoms. But now that terms like autism and ASD are on my mind and in my mouth on a daily basis, I see the limitations of combining so many different forms of autism without subdivision.

I haven't found any kind of official scale for autism severity, but the mental one I've developed so far looks like this:

PDD-NOS
Sensory processing disorder

On the spectrum

Asperger's 

High functioning autism

Autistic 

Non-verbal autistic

Severely Autistic

Not a very good scale, inaccurate and overlapping and whatever, but it's what I have at the moment. And I feel like its important to have words that describe the differences on the spectrum, because it's hard enough to talk about autism issues without having to use confusing or obscure terminology. Or insulting someone; I've read at least one article from a parent who considered the term "autistic" to be offensive.

Is there a scale that the professionals use? Has one not been developed because it's just too difficult, or am I an insensitive twat for thinking that it would be more helpful than hurtful?

I've read several articles like this one about coming to terms with autism in your child. The general theme is that autism is not just a disability, a burden or a curse, but different way of experiencing the world that has its advantages as well as its disadvantages. I love this attitude, and for many families this is a beautiful and accurate way of approaching the challenges their children face. But every time I read such an article, the nagging thought in the back of my mind is "easy for me to say."

When you think of the full range of symptoms and severity that the autism spectrum covers, it seems at best naive and at worst a gross misrepresentation of the trials and obstacles that many families and individuals deal with. Love and acceptance is definitely the right path and it's available to everyone. But it seems a bit rich to say "this is the way your child is meant to be, think of it as a gift, why would you want it to be different?" when some parents aren't sure when or if their child will talk, potty train, or be able to live independently. And I'm sure that's not what any of the authors of these articles are trying to say, but that's the problem with writing and sharing about a condition that varies so widely.

We're still waiting on a diagnosis, but we're fairly hopeful that Merry will fall into the "high functioning" range of the spectrum, what would have been called Asperger's before the two were combined. Or do we still use the Asperger's term anyway because it's so darn useful? Either way, our experience is worlds different from many kids on the spectrum, and it seems like just saying "he's autistic" is going under too big of an umbrella.