Sunday, August 30, 2015

Super Lazy Sunday

We have done literally nothing today.  All the relaxation.  The need to recharge for the coming week is strong.

Sunday, August 23, 2015

River Tripping

As I mentioned on my Facebook page a week or so ago, Flynn and I went on our annual family river trip last week.  We did it last year as well, and it was . . . rough.  Hard on him, hard for me.  The trip last year was only a few months after his diagnosis, and I was having a hard time managing my own emotions, as well as his. This time I was ready.

Flynn did amazing!  By the last day on the river he was tired and struggling, but he pulled through and did awesome.  I'll start at the beginning.

We left after a night at my parents' house, which is nearer to the airport than our own.  Flynn had his headphones on as soon as we got out of the car.  I did curbside check-in for our luggage and, after talking to a airport volunteer, got sent through the staff security check-in line with an escort all the way through security.  It was awesome.  I told them he had autism and we needed an expedited route through security and we were through to the gates in 3 minutes.

Waiting at the gate with his fidget.  Headphones off for the moment.
We took advantage of the pre-boarding for every plane, and the flights were smooth and painless.  He likes flying, but also needs to be entertained.  Thank God for iPads....  He kept his headphones on for most of the flights and throughout the entire trip home.  I think it's more a security thing than anything else, as he tolerates noise better than he used to.  Or maybe I'm just used to his sensitivity and am underestimating it as a result.  Hmmm.

We arrived in Colorado and my brother met us at the airport.  Flynn was happy to see him and was SO entertained by the baggage carousel.

ALL the happy flaps.
Telling me how it works.
It was pretty awesome entertainment for the wait.

We stayed the night at my uncle's house, and got on the river the next morning.  The river is a good 4 hour drive from my uncle's house: the amount of driving out west is a significant source of anxiety for me on these trips, as Flynn doesn't always do well in the car.  However, he did a great job and handled the wait to get on the river well, playing nicely with his cousins the whole time.

Once on the river, he was even better.  He did great with the water fights (a huge thing for our family), telling everyone about his "potato gun" which was "11 times more powerful than a regular water gun" (it was a regular water gun).  I did not need to be constantly at his side, as I had last year, and he was comfortable on the other boats with the other kids.  I could tell he was having some underlying anxiety because he was chewing his lips pretty badly, but he held himself together well. 

Flynn laughing about a joke with my brother (in the background with the hat) and two family friends.

My Uncle John, with his guitar.
So.... then my phone died.  Others, more prepared than I, took a million pictures.  Here are a few good ones.

Flynn and I at our first camp ground.
Flynn batting and my brother catching.  Ball in flight.

Flynn playing with his uncle Paul.
Sunset on the San Juan, Big Stick campground.
After four days on the river we got off and drove to a restaurant, a family tradition which we skipped last year.  On the way, he was cranky and very clearly in the "rumbling" stage of a pre-meltdown, with lots of anger coming out in bursts.  Exhaustion, hunger (thanks, food strike!), and lack of routine were finally catching up to him.  At the restaurant the rumbling continued.  I ordered a massive pile of food as soon as we were seated and asked the waitress to bring it as soon as possible.  She didn't, and he spilled a glass of water and melted, sobbing hysterically into my chest. 

But sometimes a meltdown is the outlet he needs: he'd been holding it together for so long and he just needed to get it out.  After his tears he was fine. The food arrived and he ate more than I've ever seen him eat.

The drive back home was easy, and we slept well that night, waking to get on a plane early the next morning.  He was a rock star the whole trip back, even with the nearly two hour delay while we waited for luggage.

Brief stop in Denver to touch these lights.

Waiting for bags.  Thank god we stopped for fries and apple juice.
Lesson learned: never check a bag.

Getting back to his routine the last couple of days has been hard, as I expected, but it was a great trip and we are looking forward to next year.  Thanks to all the friends and family who made it possible.

Wednesday, August 12, 2015

Drink Your Camel's Milk, Son

Oh, internet.  On good days you bring me humor and joy, with a side of salty gossip.  On bad days you bring me all the semi-rational rage.  Today we got the latter.  See if you can spot the cause:

It's subtle!  I'm sure you're mostly hung up on the fact that I was googling a farm that produces camel's milk, but let's move past that for a second.  I'll come back to it.  For now, just read the second line down in that ad.  You will see, "Helps with Autism."

Now, if there's one thing I know, it's that my son would never drink camel's milk, which they describe as tasting, "just like milk," except "salty." 

However, I'm also pretty sure that if I were somehow able to get him to drink it, I would not see any appreciable behavioral benefit. They base their claim that the milk "helps with autism" on a single (8 page) study of 60 autistic children, whose parents were asked to administer camel's milk for two(!) weeks.  The study was conducted by a government-run university in Saudi Arabia, which I'm sure was in no way influenced by any vested interest in finding medical benefits to a local specialty product.  The study found a very mild (approx. 2 points on a 60 point scale) decrease in CARS scores for subjects who drank camel's milk compared to a cow's milk placebo. 

Now I think the advertisers probably have themselves covered from a legal perspective.  You will note that the "science and research" link on the ad mentions "anecdotal studies."  They're admitting right up front that the claim isn't really based on a whole lot of hard science.  They also note on their website that camel's milk hasn't been tested or approved by the FDA to treat any medical condition. 

But as we know, autism parents are desperate to find anything that will help their kids.  Phony cures and treatments abound, and they range from relatively harmless to outright dangerous quackery .  And while this is on the "mild" range of that spectrum, it still pisses me off to no end to see that the attitudes behind these supposed cures are nowhere near changing.

Do I think anyone is likely to be harmed by drinking a few bottles of camel's milk?  No, probably not.  But it does make me mad that autism parents (who are often quite stretched financially as it is) are being sold on the idea of paying $18 per 16oz. bottle (minimum order six bottles!) for probably a quite minimal behavioral improvement at best.

Are there people desperate enough to do this?  Absolutely.  After last year's infamous broccoli study, parents on a local special needs listserv I follow were lining up to order broccoli extract to add to their child's regimen.

Now, more broccoli also has never hurt anyone, but . . . seriously, people.  Can we stop pathologizing autistic children to this extent?  I can't blame anyone for wanting more words, better functional communication, better executive function, or a greater ability to focus.

But . . . guys, what if there isn't a silver bullet out there?

You know what I have found that works for my kid?  Love and effort.  Lots of patience, tons of love, and a huge amount of hard work from all parties: him, us, his therapists, and his teachers.  Oh, and time.  All of that together has led to huge improvements.  And I'd take that over salty milk any day.

And to any salespeople out there who might be thinking of us as your target demographic because you think our kids are broken?  You can fuck right off.