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.

Autism on the Airplane and the questions it raised for me

By now, if you are reading this, you've probably heard the news story about the pilot who made an unexpected landing to remove a girl with autism from his plane, after her mother requested a hot meal for her so she wouldn't have a meltdown.  If you haven't, here's a link.  I'm not going to get into all the ins and outs of this incident, but it seems to have caused a lot of discussion---some of it focusing on the mother and what she should or shouldn't have said and if she was or wasn't handling the situation well.  I'm not going to give an opinion there, because I don't have one---I wasn't there.  I can't speak just from the perspective of being the mother of an autistic child, because we don't speak as a group.  Autism hits people randomly, and the mothers of autistic kids are not any one type, with any one characteristic.

What I can discuss is the questions this raised for me about Janey specifically---the one autistic girl I know well enough to talk about.

If Janey is having a severe meltdown, she is very capable of hurting people.  And she has.  The nightmare moment of my whole life so far was when she freaked out in the emergency room at Children's Hospital, bit me badly, tried hard to bite some nurses, threw objects around and attracted a crowd in the room, including some police officers.  If I ever have a worse moment than that, I hate to think what it might be.

We don't always have a warning that Janey is about to melt down, or much of one.  And even if we do, we can't always fix the situation that is causing the meltdown.  I do feel a responsibility to the people around Janey to keep them safe.  So---what does that translate to?  Do I never take Janey anywhere at all, because there is a chance, however slight, she might melt down and start lashing out?  If this is the solution, Janey wouldn't go to school.  She wouldn't go to stores.  She wouldn't go anyplace.  I can't feel, right now anyway, that that is the correct solution.

How do I balance Janey's right to live in society with society's right to be free from being hit, scratched or bitten?  I think I have a responsibility to take reasonable precautions.  I would not let Janey run around free at a playground full of smaller children.  She can be hugely provoked by crying, and sometimes just randomly she lashes out at littler kids.  If we take her to a playground, we stay right by her side, and I don't attempt to take her alone to places with a lot of kids.  When Janey is out of the house, she is under the direct supervision at all times of an adult.

So, what if I got into a situation with Janey like the one on the plane?  What would I do?  I'll leave aside for now that we aren't going on any planes any time soon, because we can't afford it and because I am terrified of flying.  I'll imagine that somehow we ARE on a plane, and something has triggered Janey---maybe a baby crying.  I'm imagining her freaking out, lashing out, acting in ways that sound far, far beyond anything the girl on the plane in the news did.  What do I do?

I don't have an answer to that question.  I'd of course try to keep her from hurting anyone.  I'd try to calm her down.  But she would attract attention.  It would be a scary scene.  I don't know what I'd do.  I really have no idea.

Most kids with autism are NOT like Janey. She is not the majority.  But other kids like Janey do exist, to be sure.  And exactly how we as parents and we as a society deal with them, help them---that is a question we need to figure out.  It's a question I personally need to figure out.  Janey has much to offer the world.  She is amazing in so many ways.  But the world is in many ways not set up to deal with Janey, and I am just not at all sure how to handle that.

How Little Closed Doors Add Up

A while ago, I read this article about an IKEA playground---how a mother wasn't allowed to go in to the playground with her autistic 9 year old, so he wasn't able to play there.  My reaction at first was "Well, that's not much of a big deal.  That's their rules"  Then I got thinking about it, more and more, over the last few weeks.  Although that particular incident might not be a big deal, little closed doors like that one add up.  They add up into a world where so many, many places are closed to Janey and others like her.

Most of these closed doors are not formally forbidden to Janey, of course.  They are public places that legally, she's free to go.  However, because of her behavior and because I don't want to intrude on other people and their rights to use public places, I just can't take Janey to them.  For example, after our trip to the library, I realized that it was not a place for Janey, especially not with small children around.  Trips to playgrounds or to splash parks are not really possible, because Janey is bigger than most of the kids there and prone to lashing out at the little ones.  Restaurants are out of the question, for the most part.  I would not ever attempt a plane, or a longer train or bus ride, because Janey would scream at many points during the ride.  Church doesn't work---others can't quietly worship with a screamer in their midst, and Sunday schools or childcare aren't staffed by those able to handle Janey.  We can't go to movies or plays or concerts, because others pay to be there and it's not fair if they can't hear what they paid to hear.  If you start to think about this list, there are very few places we can take Janey.

I don't like the above list, but I can understand it.  I think sometimes of the Spock line from one of the movies "The needs of the many outweigh the needs of the few" (rest in peace, Leonard Nimoy!)  Although I COULD make a point of taking Janey to many of those places, and I know many children with autism could handle those places without making them hard for others to use, I know Janey, and I am not going to ruin a movie or a restaurant dinner or church for others to make a point.

What I don't understand, what I have a much harder time accepting, are the closed doors in places that are supposed to be for children with special needs.  I think often, more than is probably reasonable to think about, about the Saturday program run by the city that I got a flyer about from Janey's school, for special needs children.  The program had a 1 to 4 ratio of caregivers to children.  That made it, in essence, closed to Janey.  She needs a 1 on 1 ratio.  The program sounded so ideal, but, much like the other respite program we tried, it seems aimed at children with mild special needs, or perhaps children with special needs that are physical and not behavioral/emotional/intellectual.

A literal closed door that comes to mind for me so often is that of the Child Life room at Children's Hospital.  When Janey spent six days at Children's awaiting placement in a psychiatric hospital, we were not allowed to take her out of her room.  Right down the hall, there was a room chock filled with toys, books, games and the like.  We were not allowed in that room.  It was for the SICK children, the PHYSICALLY sick children, not the children like Janey.  I even offered to take her there in the middle of the night, when other children would not be there.  I would never, ever have gone there and put a little sick toddler in jeopardy.  I only wanted Janey to be able to play there if no-one else was there.  But that was not permitted.

Janey's old school, the inclusion school, was in so many ways a dream school.  It had a wonderful courtyard, an outdoor classroom, a beautiful sensory room.  It was filled with people that had known Janey since she was born.  I loved her school.  And then---it too was closed to her.  I understand the reasons---I understand the reasons for everything I've written about here.  But still---sometimes it makes me cry to think of all the places Janey is not able to go, all the doors that are closed to her.

What can be done?  I'm dreaming here.  In many ways, maybe nothing can be done.  Maybe my initial reaction to the IKEA story was the true one---well, that's just the way it is.  However, I will dream.  I dream of restaurants, parks, museums, churches, playgrounds, all of those, having special days for autistic kids and families.  If we had the urge to eat out, or go to church, or a park, we could look at a web page and find a place that had a special day going on.  Even if each venue only held such a day once a year, there's enough of those places that we'd almost always have a place to go.  My other dream is that programs for special needs could truly mean ALL special needs---that I could describe what Janey needs and it would be provided.  And a big dream---that someplace like Children's Hospital would treat mental illness like physical illness---that they would actually find a way to make children like Janey feel welcome, and not like a scary outsider.

Life isn't fair.  That old chestnut mothers tell their children is very true.  Everyone has closed doors, and I accept that.  But the amount of doors closed to Janey, and to children like her, create an isolation that builds on itself, that creates a loop, a vicious circle.  There are no easy answers to this problem.