"Ooooooooooooh, she said a bad woooooord... I have to read this. "
Don't pretend that's not what you were thinking.
My potty-mouth aside, the post is aptly titled.
As the parent of a special needs child, you are faced with constant challenges. Before you all lapse in to a chorus of "uh, DUH..." hear me out.
Going anywhere with a child like Josh, requires planning. And when I say anywhere, I mean ANY-FREAKING-WHERE. Store, post-office, out to eat, long trips, short trips, airport, ferry, car, walking, the park, the back yard, yes, I said THE BACK YARD. Let me enlighten you: Josh loves to swing almost more than he loves fries. If we are going to go out so that he can get his swing-on, I need to plan - what's the weather like? If we're going out there it will be at least a couple of hours before I can think about coming back in, so, is it too hot? When would be the best time? He doesn't like bright sun and won't wear a hat. Do I have the time for this? How will I get him off the swing and back inside? Am I prepared to offer to go get him fries? If not, how am I going to do this? Do I offer to give him a bath (which he loves)? Do we have time for that? Am I prepared to spend another hour inside afterwards dealing with a tantrum if he decides he's not happy about coming in? What else can I do to keep that from happening, if anything? What's his mood in general? Will this be a time when the aftermath over-shadows any fun that was had by going out in the first place?
And that's just at home.
Anywhere in public presents an entirely different set of logistics, questions, plans, back-up plans, alternatives, provisions, the list goes on.
But you get used to it. It just becomes second nature after years of dealing with it.
A couple of weeks ago, Toad's teacher pulled me aside when I was dropping him off at school one morning, and told me that there was a field trip coming up - the 6th graders were all going to the Pacific Science Center and she wanted to know what I thought about Toadie going. She told me that the trip included a laser show, an IMAX movie, and whatever exhibits they could fit in as well.
The Science Center is one of my most favorite places. I have been going there since I was a little girl - we used to make trips down from Vancouver to Seattle just so that my parents could take us there. I'm a science nerd, what can I tell ya? I have even participated in 2 over-night events there with Zach, where we had the run of the place until midnight then got to sleep in sleeping bags amongst the exhibits.
But I wasn't sure how Toad was going to do with this. I've been there with him a couple of times before (not on field trips), and most of it just doesn't catch his interest. But, I did think that he might really like the laser show. His teacher mentioned that they were planning on seeing that first. I told her I thought he'd be ok for that, but frankly not so interested in the IMAX movie, unless they were showing Blue's Clues up on the 2 story screen.
His school requires that parent chaperones ride the bus with the teachers and kids. I suggested to his teacher that if the school would ok it, I would drive up there and meet them - that way, if he really wasn't going to tolerate being there at any point, I could simply leave with him, since I would have my own car there. Make it easier on him, as well as them. The school approved my request. Probably another good time to tell you how much I LOVE his school!
So the plan was that Toad would ride the bus (which he loves) up with his classmates, I would meet them there, we would hit the laser show, and after that, play it by ear as far as what Toadie was able to manage.
Thursday morning last week was field trip time. When I dropped him off his teacher came to give me my official "parent chaperone" sticker but also to tell me that there had been a change of plans. They were going to see the IMAX movie first. Apparently it had been discussed and they felt that most of Toadie's classmates would have trouble with the laser show, so they were going to leave that as an option later. Hmmm. So my brain starts trying to figure out how on earth I'm going to keep Toad sitting somewhat contentedly in a movie he's not really interested in, for 45 minutes, right out of the gate.
Oh WAIT.... I could bring his i-Pad!
I asked his teacher if she thought that would be ok. I'd keep the sound down/off, but it would likely keep him happy so that he could actually participate with his classmates/school mates. She said she thought that would be a great idea. So, I brought it with me.
I met them up at there at the appointed time. They were late, so we were rushed to the appropriate theater by the Science Center staff. We found a group of seats so that his class (all special needs) and teachers/aides, could sit together in one area. I made sure to have Toad sit in the last seat of our row - that way the only person beside him would be me, and, it would be easy to make a hasty exit with him if it turned out to be necessary. See? Always planning.... where should we sit to minimize potential disruption to anyone else? where's the closest exit? Always trying to anticipate scenarios.
I am a realist when it comes to the Toad. I know he can be very disruptive to others and I am not a person who has an over-indulgent sense of entitlement when it comes to doing things with him. Meaning, I am not purposely going to force a lot of other people to just deal with whatever Toadie's behavior might be simply because I need to exercise his/our "right" to be somewhere. When it's necessary, sure. But I always make sure I know how to leave somewhere easily if I need to, and I have left places of my own accord with him on many occasions. In fact, in Toad's almost 13 years on this planet, I can only think of one time when anyone else asked us to leave anywhere - and that was a customer at a grocery store a long, long time ago.
Toadie settled in to his IMAX theater seat, and happily worked with his i-Pad. Aside from the Blue's Clues episodes, Toad really just likes to make things happen on the i-Pad. Typing in a thousand letter "o's" to title events, apps, and then erasing that, and starting again, this time with the letter "l". Things like that. It's just what he likes doing, I don't worry about it, it keeps him happy.
He was quiet, happy, and calm. The movie started - Born to be Wild in 3D. He was actually watching the movie a bit in between being busy with the i-Pad. And he was HAPPY. I was thrilled. This was going to work, we were actually going to be able to participate, I wasn't going to have to leave. Josh has his i-Pad and he's calm, even interested in what's happening on the big screen. This, was fantastic! He loves his i-Pad so much, he just needs to have it with him, gives him the freedom to do what will keep him focused and happy if he needs it. It's basically become his version of a "lovey" - don't laugh, he goes to sleep with this thing in his hands/arms.
I had the sound muted so there wasn't any noise to potentially disrupt the movie, though given that this was an IMAX movie, I could have had the i-Pad up at full volume and you still wouldn't have been able to hear it over the movie sound.
About 10 minutes in, I had actually started to relax and enjoy the film. Then, a Science Center staff member popped up beside Toad. She leaned over and told me he couldn't use the i-Pad during the movie. I explained the situation to her, that Toad is autistic, is here on this school field trip, and he needs the i-Pad to keep himself calm, he wouldn't be able to stay for the movie otherwise. She said that didn't matter, we needed to turn it off. I told her if I turned it off he would lose it and then the entire theater would be disrupted, whereas at the moment, everything was fine. She insisted we couldn't keep using it - it's too bright. I asked her if anyone had complained about it. She said no, but that SHE had seen it from across the theater so SHE decided it was not ok. I asked her again, if it was bothering ANYONE else, since, the only people around us were Toad's classmates and teachers, and they were all fine with it. She again told me that it didn't appear to be bothering anyone else, but that it just wasn't ok. She just wouldn't let it go. She wasn't willing nor capable of understanding that sometimes, you can bend/break the rules and it's OK.
I had to pack up our things, haul poor Toad out of his seat, and leave.
NOT because of Toad's behavior. He had been quiet, and happy and perfectly content. But because this staff member had a need to enforce a rule regardless of the circumstances surrounding it.
Hence, the title of this post.
At the disruption, Toad started getting anxious. She took us out a side, staff entrance. When I expressed my unhappiness over her complete lack of sensitivity and the needlessness of being kicked out when there had been NO disruption to anyone else, she started to back-track. She then tried to get me to adjust the brightness on the i-Pad, maybe turning it down would make HER feel better about letting us back in. Toad was having none of me trying to do anything on the i-Pad, and it was just making him upset to be standing there. At this point, trying to go back in was not an option anyway, as now he WAS unhappy and disruptive. I told the staffer "nice job" and we were left trying to figure out where we should go, since she also hadn't bothered to explain how to get from this staff entrance to where his class would be leaving the theater when the movie was over.
I was pissed. I wanted to just leave. I mean, wtf? Everything was FINE until she got her panties in a bunch over the i-Pad. THE i-PAD, not Toad. Sigh. Honestly, I understand that there are rules, and like I said above, I am not one to make a fuss about staying somewhere that other people have paid for, if Toad might potentially ruin it for others. But this, was a school field trip. Not a regular showing. All of the kids on the trip were either classmates of his, or, in his school and they all know him. His peer helper, the young lady I've mentioned before, was there. The teachers know him. His teacher told me she was fine with having the i-Pad there. It wasn't. bothering. anyone. So why go out of your way to enforce a rule when there are clearly special circumstances involved? Even if she had said, 'ok, he can use it, but if anyone DOES complain, I will have to ask you to turn it off,' I would have been ok with that.
I didn't leave though. I thought no, let's stick this out, there's still the laser show and I was convinced he would enjoy that. So we found a spot to sit after I figured out how to get us where we needed to be and he settled back down with his i-Pad again.
After some more Science Center fail regarding lunch (basically, there was no indication as to where we could sit with the kids and eat, and when we did find a spot, we ended up being kicked out by the staff and told they couldn't eat there. Eventually we found someone who was able to tell us where the kids could eat, but it took some doing and the kids were all pretty unhappy by this point), the kids got to eat. We discussed what to do with the time we had left. His teacher felt strongly that none of Toad's classmates except one, would handle the laser show well at all. But I told her that Toadie would have zero interest in the butterfly house, which was where she was sending the rest of his class. So she and one of the aides, accompanied us with one other classmate and his mom, to the laser show, while everyone else went to the butterflies.
We still had the i-Pad. We got settled in to our seats and waited for things to get going. When it was time, the staff member who was doing the show went over the rules, one of which was that NO light from any source was allowed during the show, meaning cell phones, computers... he didn't say i-Pad but of course, I knew that meant we were going to need to turn it off. But the lights were off, and it was completely black - Toad loves the dark, so I thought he might be intrigued enough to tolerate my gently removing the i-Pad from his lap. He started to try to grab it back, but then the show started. I directed his attention to the ceiling and he was hooked. For a few minutes he held my hand and had me squeezing it, and he was humming softly, all anxiety behaviors from my taking the i-Pad from him, but after about 5 minutes, he was completely sold on what was happening on the dome above our heads. In fact, he was thrilled - so happy and excited once the show was really underway, he was bouncing up and down on his seat and laughing and smiling, totally enthralled by the laser patterns he was watching. I had more fun watching him than I did watching the show, my little Toad, was really loving this.
So ultimately I'm glad we stayed even though the IMAX/lunch experience left me with a sad feeling toward the Science Center in general. Toad's enjoyment of the laser show made the trip worth it, however, it does not make what happened ok.
I wrote a letter to the VP of Guest Services/Theater Operations and cc'd it to the President and CEO of the Science Center to express my disappointment with their staff's lack of sensitivity, understanding, and just plain common sense - for a place whose entire existence is about teaching kids, they should certainly understand that kids with special needs are going to be included in many of their programs.
We'll see what kind of response I get, if any.
ps. if anyone knows how I can turn Toadie's room in to a Laser Dome, please let me know...