Friday, January 30, 2015

The Plot Thickens

I really don't know how I feel about this.

Research on 85 families found that siblings with autism had the same genetic risk factors less than one third of the time. In nearly 70% of cases, tests on the siblings revealed little or no overlap in the mutations known to contribute to the condition.
The findings challenge the presumption that the same genetic risk factors are at work when autism runs in families. “We knew that there were many differences in autism, but our recent findings firmly nail that down,” said Stephen Scherer at the University of Toronto.

 My sons and myself all had blood drawn in order to contribute to Dr. Scherer's research. When an article was published last year highlighting some of his work, I immediately got in contact and begged for my children to be included. My youngest was less than a year old, and I was desperate for any answers. While he very graciously allowed us to be included, the results are a long time coming. Hopefully we'll have some answers by summer.

My hope was that someone could point to a glitch in the tall one's genetic code, and say, "Look! Here it is! This is why!" I was hoping that the same person could point to the short one's code and say that the glitch isn't there. As time passes, I realize more and more that it's a little more complicated than that.

Thursday, January 29, 2015

The Autiest Place on Earth

You'll often hear talk from parents of how their autistic children seem to have a special affinity for all things Disney. I honestly thought that my son would be the exception, until we went to Disneyland.

To start, the last time I visited one of the Disney parks was at least 20 years ago. They had only just opened up Indiana Jones, and "Colors of the Wind" was on a continual play loop throughout the park.

I had been doing some looking into going there for Christmas 2013, but research quickly showed the yuletide season to be one of the busiest of the year. Combine that with premium air and hotel prices, and well - the idea loses its appeal pretty quickly. I still had a lot of credit card points burning a hole in my pocket, so I managed to plan a spur of the moment, last minute (as in, day before!) trip in February 2014. It's pretty amazing when you think about it, especially given that the tall one's dad can be difficult to deal with. Luckily he had some work to do around his condo and it worked out better for me to take the kid off his hands. So away we went!

Mousesavers proved to be an invaluable resource. Through them we found the Howard Johnson Hotel across the street from the resort. They had a great rate and a little pirate ship playground that the tall one loved. After a ridiculously early morning flight, we grabbed some brunch then it was off to the park!

Disney is magic. Everything just seems a little brighter walking in. The first order of business, and what truly made this trip possible, was a trip to pick up the Disability Access Card. It's predecessor, the Guest Access Pass was the one which allowed you to simply walk up to the front of the line and get on the ride. This approach led to several abuses, most notably the disturbing trend of well-to-do families hiring individuals with disabilities to escort them through the parks so that they could avoid the lines. The current program doesn't allow for this.  Now pick a ride to go on, and they will give you a return time for that attraction. You're still waiting, but the difference it you aren't waiting in the line and can fill you time however you wish. I know a lot of bloggers have complained at great length about this approach. All I can say is it works wonderfully for us, and is fair in that it doesn't allow us to skip ahead of other people. It's really exciting being able to take a "normal" vacation. Without this option, Disneyland wouldn't even be in the realm of possibility.

The process of obtaining the card was easy, and the Cast Member offered to put our first ride right then and there. At his recommendation, we went for Peter Pan's Flight, possibly one of the most iconic rides in the park where you soar through London. What child wouldn't love it? Well... mine.

Peter Pan's Flight can probably be counted as the single most traumatizing event of my son's life. He almost wet his pants he was so scared. I almost wet my pants thinking of the 3 days of hell I was about to experience at the Most Hated Place on Earth while he clung to me screaming and crying.

We then dialed it down, and tried out things like the carousel and Dumbo. Turns out, he loves every single ride there. Except Peter Pan. The rest of the trip was amazi magical (except for the part where the tall one sacked Winnie the Pooh which got us in a bit of trouble.) So great, that after a hurricane wiped out our family plans for Thanksgiving, we ended up using the flight credits to go back in October. This involved something like 35 rides on Thunder Mountain. For his fourth birthday, we're doing a special "Mom & Me" trip that I'm really looking forward to.

A few tips for others thinking of going to the park, particularly with ASD:

1. Do your research. There are plenty of websites out there run by mouse devotees that will give you the inside scoop on how to maximize your time and money. It's expensive, but you can save a lot by doing some planning. Everything from grocery delivery to bringing "souvenirs" from home.

2. As part of doing your research, check out crowd calendars and ride closures. The absolute last thing you need is to show up to find out that you picked the busiest day of the month when the ride you've been talking up is closed for refurbishment. Same with the hotels. Make sure the pool, etc, isn't being refurbished.

3. YouTube videos. Unsure how your child will react? There are plenty of point of view videos for every ride in the park. Splash Mountain and Thunder Mountain Railroad are favourites in our house.

 4. Social stories (obviously.) My kid loves his visuals. I really like those little Disney Golden Books for an introduction to some of classic characters.

5. Know your kid, and don't be afraid to leave the park. For us, what works best is getting there first thing in the morning, and then heading back to the hotel somewhere in the noon-4pm range. It's the busiest and hottest time in the park, and it lets us have a quiet lunch, the short one gets a nap, and the older one either goes for a swim or watches some videos. Mom can catch up on emails (hotel wifi can be sluggish in the evening), or do some quiet reading. This I find really helps in avoiding meltdowns later. You might find your non-napping child actually does have a bit of a nap. We can go back to the park, which is open way past bedtime anyway, and then check out the evening entertainment. There are also quieter areas in the park, like the water play area in Bug's Land.

6. Strollers. Ugh. Even if your kid is past stroller age, you will probably need one in the park. Might as well bring it. It's free on the plane, and they're expensive to rent. If you don't need it, leave it in the hotel room.

7.iPad. I find we don't need one in the park, though depending on your kid, it might be helpful. My kid is stimulated enough just looking at everything, but this won't be true for every ASD kid. We bring one for the plane ride and for back at the hotel.

8. Food. My kid is picky, and outside of home, that translates into junk. On vacation, I'm cool with that. EAT ALL THE CHURROS. Of course, it could get a little problematic after a few days. We run to JambaJuice in Downtown Disney to get a smoothie in the mornings and I add a fiber boost to it just to keep things running smoothly.

Friday, January 23, 2015

Someone has high hopes...

While getting in the car to go to preschool on a particularly dreary morning:

"First we go to the airport, then we go to Mexico!"

Needless to say, our car ride ended in disappointment.

Tuesday, January 20, 2015

Right now there are four of us. Or five, if you count the dog.

Me, obviously. There's the tall one, who's almost 4. Then the short one, who's still under 2. Then my hetero-life-partner that I pay to help with the kids and look after my shit. With two boys, a dog, and an annoying ex, there's a lot of shit involved (I guess he would be the sixth.)

Another defining characteristic to add to our household is that the tall one is autistic. Right now the main impact of that is the never ending stream of therapists going through the house and being able to get a disability pass at Disneyland. So it's not all bad.