I'm sitting here at my desk at work, and I have Schuyler's Big Box of Words with me. I do believe that aside from that horrible day or two back in Austin when her summer school teacher took it away from her, it's the first time she's been without it in over a year, since she first started using it. And it's making me a little crazy.
Her summer camp is going to an amusement park today, a big one, and none of the kids are bringing backpacks. We thought hard about what to do. We could have insisted that she be allowed to take it anyway, and I'm sure they would have gone for that. But with the counselors occupied with kid wrangling, she would have been responsible for keeping up with it and would have been excluded from a lot of the activities that the other kids would be experiencing. We could have kept her home rather than run the risk of her getting into a situation where she needed it and didn't have it, and believe me, we considered it.
After I talked to the counselors and determined that at least one of them knows sign language, I decided to stop being such a worrying freak and just Let. Her. Go. The park is in the same city where I'm working, so I made sure they had my business card and could call if there was a problem or if she needed her device. I'm like five minutes away.
And so I sit here, trying not to be anxious and trying not to second-guess the decision to send her off to have a day of wordless summer fun. In theory, we've always said that her device is her voice and it should be with her at all times. In practice, that's not always feasible. When she's on the playground, for example, she doesn't take it since it could be damaged and she can't see the screen in direct sunlight anyway. Obviously, when she goes swimming, same thing. When she's older and can take more responsibility, that will change, I'm sure.
The difference this time is that she's going a whole day without it. I wish I knew that we'd made the right decision.
I spent the evening with a good friend of mine who works as a nanny, and there's a small chance that she may be able to watch Schuyler next summer. Here's hoping. She's Schuyler's favorite grown-up, and one of mine, too, come to think of it.
Hope she had a great day, even without her BBOW.
ReplyDeleteLetting go/cutting the umbilical /whatever you call that process that means losing control over your child's safety, and handing it to others, or eventually to said child herself? Scary, even for parents of neurotypical kids.
I hope your nanny friend can look after her on the hols, that'd be great.
I think you did do the right thing. After all, as you said, sometimes you just have to let her go — from what I know of Schuyler, she's pretty resilient and pretty capable. She's going to have a blast, I just know it. And when you see how much fun she had, you'll know you did the right thing.
ReplyDeleteLongtime reader/lurker ...
ReplyDeleteWhat surprises me here is that you don't mention discussing it with Schuyler herself; either to ask for her input on the decision, or to make sure she felt okay about heading off without her BBOW this morning. Now I'm curious, because I can't imagine Schuyler just leaving without the omnipresent BBOW and not thinking anything of it!
I asked her, of course. She was fine with it, since she never takes it when she plays and she knew she was going to the park.
ReplyDeleteShe's going to do famously, and I really believe that you are doing the right thing as a parent. Her monster is powerful, but Schuyler is strong, adaptable, and creative. Being in this position (without her parents, without her BBOW, but still with people she knows and in a situation rife with opportunity for positive experience) is a very important place to let her be.
ReplyDeleteMy son has Asperger's and can offend someone like nobody's business. He's made some friends on the street this year, and I've spent a lot of time with all of them to "educate" the other kids just enough for them to understand that my son doesn't react the way they might expect but if they are patient with him and can explain things, he'll understand. The day I chose to stay in the house and watch them through the slits in the blinds, I would have paid good money for some Valium. But without me there, they ALL found new ways to talk to each other and get along.
The hardest part of being a parent of any child, but particularly one with special needs, is to be the foundation - and then step back and let them build the house.
Hang in there. :)
Is it cold and unfeeling to admit that I'm picturing you using the BBoW to tell your coworkers "You are a great disappointment to Ha-Oh-Em-Er"?
ReplyDeleteI hope Schuyler is having a fabulous day. I'll bet she's a fearless coaster freak.
Ouch. Hard choice. I think you made a good one - keeping up with her BBoW would have been hard for her when she wanted to have fun. And since Schuyler can make her wishes known through signs, it's not like she's completely out of communication. Just limited.
ReplyDeleteOne of my nephews has autism. It's always freaky to have to hand him over to other caregivers who might not understand what he has to say -the family only understands him half the time. But he usually does okay, when the caregiver is willing to actually listen to him. And that's what a good caregiver should do; if they fail to do that, they shouldn't be taking care of kids. Good for you letting Schuyler have a day of fun.
Perhaps for future trips it might be possible to look into giving some Nice Young Person a few $$$s to be Schuyler's roadie in that kind of situation?
ReplyDeleteI guess it won't be an issue a few years down the line as she'll be big and strong enough to haul it around herself with no problems, but it's a thought for the meantime... most other speakybox users I know either use something portable - small and light with therefore a basic and crappy vocabulary - or are wheelchair users and therefore have an easy solution to Box transportation.
For indoors I know a lot of ambulant speakybox users have it on a tea-trolley type thing - would that be any good for freeing S up a bit?
Ooh, and at risk of sounding like I work for Prentke Romich, when/if your lassie graduates up to the Pathfinder the daylight thing will totally cease to be an issue as it isn't backlight-dependant. In the meantime, is the little plastic visor any good? Not sure but looking at the thing through sunglasses may also help a lot - just a hunch.
How new is the Pathfinder? I don't remember seeing that when she got her Vantage. It looks big.
ReplyDeleteI spent a summer as an "kidroadie" for a girl with leukemia. Sometimes she and her mom would get into day long clinic appointments and it was horribly stressful for her and mom. I was there to entertain and keep kiddo company ( I think she was 9, I was 16) and mom could go get food or have a break when she needed. As a summer job, it wasn't bad. ( i think I got paid a very small sum, but the perks were great, because after the clinic, off to lunch and the zoo and whatever else.)
ReplyDeleteThat 9 year old is now a healthy 20 something.
But when Schulyer's a bit older, it might help on some occasions to have a "companion" that can manage to blend in and lend a hand. Not as an attendant, but y'know, backup.
Ooh, it's been around for a good few years. Its predecessor was the Liberator, I think Mate (22 and about to go into the final year of her bachelor's degree) got hers maybe 3 years ago? It uses Minspeak, the same as the Vantage does, but only has a very small dynamic display for activity rows etc as your typical competent Pathfinder user has a location-memory vocabulary covering most stuff. Seem to remember it being very similar in size to a Vantage.
ReplyDeleteHave you guys had any involvement with ISAAC?
Mate's speaking at their biennial conference in Dusseldorf in about 6 weeks time. Communication Matters, its UK chapter, is quite active here - I went to its conference last year.
I went and looked it up, 'cos I'm a bit obsessiveish like that.
ReplyDeletePathfinder:
Weight: 4.5 lbs
Dimensions: 12" x 9" x 3"
Speech Memory: 40 MB; 60 minutes
Battery Life: 12 hours with normal use
Vantage:
Weight: approximately 3lbs 9.1oz..
Dimensions: approximately 9" width x 7.75" height x 2.25" depth
Recorded Speech memory: over 20 minutes
Battery life: 6-8 hours with normal operation
All lifted off the PRI site - so yep, the Pathfinder's a bit bigger and heavier. Positively a bantamweight next to the Liberator or Touch-Talker, though... Schuyler chose a good decade to be born into!
Oh Rob, here's well wishes...BE STRESS FREE...(I know you are thinking 'yah, right?!')
ReplyDeleteSoon you will know whether you made the right decision or not. But there is no handbook for this...your writing one as you go! I think Schuyler is more resilient than any of us, and is probably finding ways to be resourceful.
Just chalk this one up for experience and you will know next time, with more confidence, with what to do.
This friend/nanny thing sounds great. I hope you can find someone that is the right fit for her, who will take her into the big wide world to experience things with love and patient understanding. The best scenario is that he/she had other kids so she could have that social interaction too. I sure hope you could find somebody like that.
Hang in there today...~hugs~
Who needs words at an amusement park? It's all "whhhhhhaaaaaaa" and "wheeeeeee" and "eeeeeeeeeeeeeeee" anyway ... when you're not stuffing your mouth with junk food! I'm sure she did great. Every time you worry, just remember that you've laid a great foundation with that girl - she's a trooper and she *bounces*. I wish I had her chutzpah.
ReplyDeleteI agree with Lucy--shrieks and giggles are all you need to utter at an amusement park. And an air of magic follows that little girl, so I think she'll do wonderfully today. :)
ReplyDeletePlus, if anything happened to the BBoW, I don't think I could take another of the heartbreaking 'I'm sorry, daddy' moments. (That post where she lost her umbrella still makes me misty-eyed.)
I bet she's not scared of any rides, not even the roller coaster. :)
She gets to be a "normal" little girl for a day, playing at the amusement park with her friends. I'm sure her counselors will be keeping an extra eye on her and when she gets home she'll wear the batteries down on her BBOW to tell you all about her fun day.
ReplyDeleteYou made the right decision to let her go and make some memories. She's already a little different, but having to stay home while her friends have fun is just the worst and would make her feel even more different.
Hey, here's a photo that goes with this post: http://flickr.com/photos/babasteve/172677903/
ReplyDeleteI would have e-mailed you but some of the e-mails I've sent have come back.....
Open, Open, Open
ReplyDeleteCome On ROB - Update us!!
Hope she had a wonderful day and you got to heave a huge sigh of relief at the end of it!
ReplyDeleteYou gave her wings, you had to let her fly. It had to be incredibly scary but I'm sure she had a blast! Let us know.
ReplyDeleteamazing. you are doing a great job.
ReplyDeleteWaiting with baited breath to hear how it went...
ReplyDelete