Legoland Discovery Center Boston!

This past week has been vacation week here, and I must say something I never thought I'd say about a vacation week with Janey---it has been relaxing and fun!  For the most part, anyway.  She's been in a banner mood, cheerful and talkative and cooperative and just pretty much a joy.  It's been really something.

Janey looking at Boston in Lego form

And today we had a special treat to top off the week...Legoland Discovery Center Boston!  I was offered tickets to an autism-friendly special time at Legoland by one of the organizers, who had read this blog.  I've heard of bloggers getting offered things like that, but this was the first time it happened to me, and I was quite excited!  However, I really was unsure how it would go.  Janey has never shown a real interest in Legos, and I didn't know much at all about the place.  But I love the idea of autism-friendly times at museums and other venues, and I wanted to give it a try.

Well, it was a huge success!  The event was from 8:30am to 10am, before the regular opening time of Legoland.  I felt worried Janey would want to leave after a few minutes, and I wouldn't be able to write much about what we did there.  However, we wound up staying until around 10:15! (you could stay as long as you wanted, even once the regular opening time started)

Gillette Stadium, Lego style

The other surprise was how much Tony and I enjoyed ourselves.  The coolest part, to us, was the Boston made all out of Legos.  All the big tourist places were included---Fenway Park, Cheers, the Hancock Tower, Old Ironsides, and there were also things like a T bus and commuter rail, Logan Airport and City Hall.  It's really something what you can create with Legos.  Janey seemed to enjoy looking at the Lego buildings too.

Her favorite part, I think, was the two rides.  There was a ride sort of like the Dumbo ride at Disneyworld (from what I remember the one time I was there as a kid), where you go round and round and can also go higher or lower.  With this ride, you did that by pedaling bike-like.  There was also a train type ride where you could shoot spiders and bad guys with laser guns.  Janey didn't try the shooting part, but Tony and I did, and the ride kept score (Tony beat me!)

Fun on a ride

There were areas where you could build with Legos, which Janey wasn't too into, but there was enough else to do so that was fine.  There was also a 4-D movie, with 3-D glasses and special effects like snow.  I loved that, as I've never been to a modern 3-D movie, but Janey didn't last there.  That's what I love about autism events---nobody gets upset if you need to leave.  Tony took her out of the movie area and I stayed for the about 10 minute show.

Tony's cool creation---Janey is unimpressed

Janey enjoying the experience

I talked to one of the organizers of the event, and she said this was the 2nd time they've had an autism event.  She asked us how we heard about it, and told me that they don't like to advertise a lot, because they want to keep attendance low, so only kids with autism and their families are there, but they also want to get the word out to those who are their intended audience.  I can see how that would be hard.  They did send home a flyer from Janey's school, so I think they are doing a good job with outreach.

At the playground

It's wonderful to be able to take Janey to "regular" places, and to not have to worry about meltdowns in lines, overwhelming crowds and stares from her behaviors.  I think one of the best parts is that we ALL can enjoy ourselves, as a family.  So much of the time, it seems like either Janey can enjoy herself, or we can, but not both, and for us all to be having fun together---that's wonderful.

After the event, we walked around the area a bit, and went to a cool little riverside playground and then had a fancy piece of cake in a French type bakery.  It was a whole morning out.

I'll write more soon about vacation week and my thoughts on it.  Tomorrow is back to school.  Often, I would have been counting the seconds, but this vacation, there is a small part of me that almost wishes vacation was longer.  Miracles never end.

Being Tough---my own way

First, I want to thank everyone who reads this blog.  You guys keep me going.  I wish I could know you all in real life.  Maybe someday, I'll travel around and try to meet every last one of you.  In the meantime, it's great to hear from you here, have you as friends on Facebook or just know you are out there someplace!

Last week I was hit with a huge amount of self-doubt.  There were lots of reasons, some I'm not going to get  into just yet, but I was feeling hugely down on myself.  But today, thanks to thinking about things a new way with the help of all of you, I'm feeling much better.

I'm never going to be tough in some ways.  You will not see me organizing fundraisers, or hiring top advocates to come with me to IEP meetings, or educating everyone that looks at Janey with a hint of anything but total support.  I am thankful there are people that can do those things.  If there weren't, we'd be back in the bad old days, and Janey would not even get an education.

But I am tough in other ways.  I can't tell you how many times I've had a morning that for many, for most outside the wonderful world of Holland trips, would be the roughest morning they've ever had, and still, I somehow got Janey dressed and ready for school, and drove her there.  I don't know how many nights from hell I've had, where Janey barely slept, screamed or laughed all night, was possessed by whatever possesses her, and still, I got up the next day and went about my life.  I've stood strong while Janey lashed out at me with hitting or biting, and responded with hugs and comfort.  I've continued to shop while Janey screamed in a way most people have never heard a child scream, all the while holding her hand and whispering words of encouragement.  I'm not looking for rewards for this, but I'm realizing it's something to be proud of.

Many times, I've felt guilty because I don't go to more school meetings, I don't go to autism rallies, I don't go to the statehouse to advocate for autism.  I feel I don't do enough for the greater autism world.  But this morning, a song came into my head.  I'm not very religious, but I love religious music.  It's my form of faith, I guess.  Going to Sunday School growing up in rural Maine, there was a children's hymn we sang every Sunday.  Here are the lyrics...

Jesus bids us shine with a clear, pure light
Like a little candle, burning in the night
In this world of darkness, we must shine
You in your small corner and I in mine!

I've always loved that hymn.  I picture a huge, dark room, and me in one of the corners, burning a small candle to fight the big darkness.  I can't light up the whole room, but I can light up my corner.  And that is what I am trying to do with this blog.  I can light my little corner.  I can write honestly and truthfully and in a heartfelt way.  That is something I am able to do, and it's my way of lighting my small corner.  It's my way of being tough, but true to myself.  And I'll keep doing it.

World Autism Awareness Day

Well, here it is, World Autism Awareness Day again, and I don't have a single WAAD card out.

I did a quick look today to see what kind of events are planned for today. As I kind of half expected, I didn't really see any that were FOR autistic kids or adults. Lots of fundraisers, walks, lectures, etc. But not something I could take Janey to. I am grateful for the awareness, for the research, for all of that. But if it's autism AWARENESS day, perhaps it would be a good day to expose people to actual human beings with autism---to let them see what autism actually is and isn't. I had ideas like having restaurants have a special time, from 2-4pm or something, where they would just for that day be autism-friendly, and you could go there and not feel worried if your kid screamed the whole time, or spilled water, or ran around. You could just sit and eat a meal among other families with autistic kids, and smile at each other, and enjoy being out. Or another idea---places like indoor gyms or pools could have an autism time every April 2nd, so you could get some family recreation. Or maybe somehow there could be highly staffed parties for JUST the kids, so you could drop them off for an hour or two knowing they were doing something special and fun, while you got a break. You know, sort of like how parents of "typical" kids can sometimes take their kids to birthday parties and LEAVE them there and get coffee---that kind of luxury treat for everyone!

But those are dreams. I have to be content that Janey is living in a world that certainly IS more aware of autism than a world 20 or 40 or 100 years ago would be. I am very lucky that way. People know what autism is, kind of, even if they haven't met a lot of people with it.

I'm thinking of ways myself I can actually live up for the name of the day. How I can I make people more aware of autism? One thing I try to do is tell people Janey is autistic. I like to do that for many reasons. It explains her behavior, it lets people know she isn't just being rude in not answering them and it lets them meet someone with autism. It has worked well for me overall. There are quite a few stores where Janey is known, and I feel good about that. This blog is another way---I try my very hardest to write honestly here---to bare my heart about Janey, not just the bad but the good. I wonder if I show the good enough---that's a part of autism I want people to be aware of to---that Janey is a delight often, that she is fascinating in a lot of ways, that I love her intensely and I always will. I want to give some hope to other parents with newly diagnosed kids. But I don't want to lie. I don't want to say it's better than it is, I don't want to be all sunshine and flowers. I want to be honest. I can also encourage my sons to talk about Janey. I sometimes suggest her as a topic for essays at school, or tell them to not hesitate to explain to friends why sometimes they prefer to spend time at other people's houses instead of having kids here. I want them to be proud of her as a sister, but to also let them know it's hard, it's something THEY should be proud of themselves for---being good brothers to her.

And so awareness is a good thing. But I wish this day could somehow also INCLUDE those with autism, instead of just being ABOUT them.