Yes, I've been pretty invisible lately, sorry. Part of my absence has been a result of living inside my head lately and not really engaging with the world much. But mostly I've been quiet because, well, things have been quiet. Schuyler's out of summer school and in full-blown summer hobo mode, which she has certainly earned. I'm looking at writing projects, some of them new ideas and some of them things I've been kicking around in my head, but none of them ready for public discourse just yet. Given how fascinating it can be to endure the magical experience of writers writing about writing, that's probably just as well for all of you.
Summers are always a bit of a mixed bag for Schuyler. On one hand, she's built for summer. She could actually jump in the swimming pool first thing in the morning and spend the entire day in the water, and she would still offer petulant resistance if we told her it was time to go in at midnight. She doesn't burn, but instead turns a summer brown that is an alien concept to me, with my frighteningly white Gollum skin. She stays up too late, often watching inappropriate tv with me, and she sleeps late the next morning. She's a little girl in the summertime, and if she sometimes passes for neurotypical at school, during the summer she moves through that world with even less effort, like a Martian spy living undetected in our midst.
I exist in a constantly shifting state of trust and then suspicion where Schuyler is concerned. That's certainly nothing new. Last week, two days before Schuyler's summer program ended, I was sitting at my computer in the living room doing something unproductive and waiting for Schuyler's bus to bring her home. The bus was scheduled to arrive at 1:10 and had been consistently getting there at that time or maybe a few minutes earlier, aside from a few times it was late. The procedure was the same every day, as it needed to be. The bus arrived, I went outside and greeted Schuyler, the bus left. The driver released Schuyler to me. This is also the standard procedure, by the way, and not just for special needs kids. If you are willing to allow your kid to just be dropped off and left to their own devices, you have to sign a form stating such.
So you can imagine my surprise at 12:45 when I heard the front door open behind me. I assumed it was Julie coming home for lunch until I heard, "Hi Daddy!"
I think my face did that Japanese anime bugeye thing, accompanied no doubt by a loud "BOING!" sound, and I turned to see Schuyler walking in as if this was an everyday occurrence. I got up and went to the door in time to see the bus driving off. To be fair, it is entirely possible that the driver waited to make sure she actually got in the door, but I have no way of knowing either way.
It wasn't a tragedy. I was there, the door was unlocked, and it all worked out just fine. But what if I'd gotten caught in traffic and didn't happen to be home 25 minutes early? Schuyler doesn't have a key and doesn't have the dexterity or the hand strength to work the lock even if she did. Would she have sat outside the apartment in the 100+ degree Dallas heat? Would some kind neighbor have taken her in, no doubt calling the police or child protective services to come take her away? Or perhaps someone not so kindly would have taken her off our hands for us. Like any apartment complex even in the best of neighborhoods, we have a few lurking Boo Radleys wandering the parking lots.
It's something of an academic point since my paranoia guarantees that I would never be away from home in the hours before the bus dropped her off. But still. I sent an email to the school transportation director and got a phone call pretty quickly, and to his credit, he recognized how serious the mistake was and offered no excuses, only apologies. But it brought home to me just how much trust we as parents are expected to hand over to others in the course of our children's lives.
I recently read a cheerful little something on the New York Times Motherlode blog about parents and death. (I believe the discussion was sparked by the unknown fate of Michael Jackson's kids, because there is clearly no discussion being had anywhere in America that is not in some way about Michael Jackson.) It made me think about the discussions that we've had about what we would want to happen to Schuyler if the icy hand of mortality were to grab us both up at once. We have family members we trust, of course, but none of them live in places where the schools would be even adequate for her needs. We've even considered asking one of her teachers here in Plano to become her legal guardian in such an event so she could continue to go to school here. But how do you even have that conversation?
For now, we'll keep taking separate cars.
21 comments:
I thought the point of Boo Radley in that book was that he was totally harmless and completely misunderstood, that people feared him because they didn't understand him - that he had more in common with your daughter than with any who might wish to prey on her.
Yeah, I don't want this to sound as rude as it's no doubt going to sound, but you are taking a a joke and over-analyzing it.
I am constantly frustrated by the little things of being a teacher. One of them in my area is how bad the bus system is. I am glad that you were taken seriously and hopefully this won't happen again.
I think too much or too little paranoia is a bad thing. The hard part is finding that line where your child gets to enjoy being a child and you don't feel like locking yourself in a closet.
I'm happy to see you back here and sorry to hear about the bus but it sounds like you have other (heavier) more important things on your mind right now. Just glad to see you haven't melted.
Yesterday, I watched Hannah board an airplane at DFW, by HERSELF, and fly to Denver!!! Okay, well, it was as an unaccompanied minor. . .even though she will be 20 in a month. She was met at the gate in Denver by one of our dearest friends who understands her and will watch over her. But that 2 hours that she was in the air and the days leading up to her departure were stressful!! I lost sleep over the fact that I was releasing the child I have cared for and thought for for almost 20 years into the hands of strangers who have been paid to assure her safe passage to Denver. . .but who do not know her or understand her in the slightest. We knew it was time to let her do this and this was probably the best scenario for it. . .but still. ( I remember now that you have gone through this yourself!)
What struck me, from conversations with people, is that they just don't get it. For the most part, they just cannot understand the enormity for us of this act that thousands of children do everyday. Fly by themselves.
On one hand I am glad for the respite. . .and it will be because I totally trust the people she will be visiting. . .but on the other hand, it will be a long 10 days!!
For the record. . .Hannah had a blast. She loves flying and traveling and wasn't nervous about this at all.
Didn't Boo Radley turn out to be harmless, even benign?
I can understand your panic. We had a spate of "mix-ups" in our town last year. The first involved a bus driver returning the bus to the bus corral at the end of the afternoon with an undetected child still inside The child was sleeping and had rolled down beneath eye-level, but wouldn't you think the driver would walk down the aisle checking for lost backpacks, stray Nintendos and, I don't know, .kids before locking up and going home?
The child was on the bus for hours before the frantic parents called the police and they found him still huddled in his seat and brought him home.
The second mishap involved a bus driver dropping a child off at an after-school program at our local YMCA. The hitch came when the Y was closed that day and someone forgot to notify the school.
A woman driving by saw the child wandering around the empty Y parking lot and went to check things out.
Several people I talked to about those incidents actually said they envied the parents because they had grounds for a promising law suit. That disturbed me almost as much as the incidents themselves.
we have always wrestled with "who will get the kids?" family is far away and only seen once a year, at most. we really re-evaluated the idea when my son made friends with a new student. sweet kid. both parents died within two years. he was shipped halfway across the country to live w/ an aunt he barely knew. aunt is a lovely, lovely person, but it was incredibly hard for him. after losing both parents, he also lost his home, his friends, his school, his teachers... everything. would have it been better for him to be with close family friends and have some stability & continuity in his life? dunno. hard situation.
his aunt has worked hard to help him put down "roots" here while maintaining connections with his old life. she is fabulous. the school has worked hard to support him. we have tried to provide a safety net too.
there is no good answer... just things to think about...
Hi Rob
I think your post points out one fundamental that, as parents of non-typical kids, we sometimes forget to recognize and give ourselves a break over. That is, that EVERYTHING becomes more complicated when you have a non-typical child. Every single darned thing, even after you're dead. We have had to make the decision to ship our kids to New Zealand - New Zealand, for Pete's sake! if we both kicked the bucket, to stay with our childless sister, over our much-nearer sister with kids, because we believe the childless one would, at the very least, do her damndest to accommodate their non-typicality, and parent in a way that we could appreciate (our sister with children thinks we're idiots and probably that most of the non-typical behaviour is due to our lack of parenting skills, ie Not Doing It Her Way - but that's another discussion entirely). I often think that we don't give ourselves, as parents, enough of a pat on the back for dealing with all the little and big things - everything, in fact. We are blessed by having a psychiatrist for our kids who never lets an opportunity go past to let us know that she thinks we're doing a good job as parents. Everyone needs a cheer section!
On the deciding who gets the kids thing: My aunt who has a daughter not much older than Schuyler w/ Down Syndrome has gone back and forth a bit about who would be responsible. When she was teeny, it would have been a sister-in-law and brother-in-law; that changed to a different sister-in-law and brother-in-law when they (the first potential guardians) got a divorce. Now it would be her day-care provider - they attend the same church, and her day-care provider truly loves my cousin and so do her two kids. It's a tough choice to have to make, I'll say that much. Good luck with your decision there.
-Sarah
This post motivates me to become a better teacher... advocate...and a better designer of programs that help the kids and individuals we know and love. Thanks for your work and sharing Rob.
Yeah -- that question of who gets the kids is a real humdinger. And it's not even who gets them, it's who the hell will do all the little stuff, the stuff that only we know, the adaptations, the tiny, incremental stuff that I wouldn't even know how to write about -- frankly, if I die, my husband would be in the shits -- and if we both die, well I'm hoping it's some kind of nuclear disaster and we're all gone?
In all seriousness, it's good to hear your voice on the blog, again. I had lunch with our mutual friend Vicki yesterday and she spoke so highly of you and your family.
Boo Radley wasn't harmless folks. He killed the bad guy. Very harmful to bad men, but given that the bad guy had it coming (attacking a child and all) I wouldn't hold that against Boo. And 'scuse me for the over-analysis.
Anyhow, this post reminds me of the woman who wrote about letting her nine year old ride the subway in NY and how the story went worldwide.
Oops! Sorry. Meant to finish that and get to the point but my son hit the enter button.
Anyhow, I was reading an interview with the NYC mom and she talked about how many people all over the world have contacted her both in support and in anger. It's very different for Schuyler of course, but similar in that knowing when and how to let a kid be independent is so hard because so much depends on who that kid is. Schuyler isn't strong enough to work the lock, but is probably mature enough to stay home a few minutes alone. Meanwhile I know perfectly healthy teens that I can't imagine willingly leaving alone to care for themselves.
Who are all you indignant Boo Radley groupies, anyway? Why are you getting hung up on some stupid little joke? Seriously? Fixating on the Boo Radley joke? That's what you get from what he wrote? The injustice of Boo Radley?
I just enjoy your posts so much! Like a perfect watermelon wedge on a hot summer day. You know, just the right crispness and very sweet. Definately not room temp, oh no, I'm talkin crisp, cold, sweet (no seeds).
The cover of the German edition says:
"Why don't you speak?"
"A father tells of his life with his mute daughter."
Yeah, that "who gets the kids" is a bit of a pickle. We don't want to hurt the feelings of my sister in-law, who is very nice but just doesn't have the same values and parenting philosophies we do, and we couldn't imagine wishing my sister upon them as their guardian. That leaves two sets of friends we're considering - one with 3 kids of their own already, and one with no kids. It's a tough choice, but we know that either couple would be great to the kids and make sure that they could still see their blood relations too.
So many of you have the problem of "who" to choose - let me say that I have seen in my practice some REAL problems when one party has duty to care for the child and another party has control of the money. (I'm an Enrolled Agent.) It is truly a difficult problem. JUST PLEASE have WILLS, even interim ones that you change. Make sure someone knows where all the paperwork is buried!
I know that fear of sending your non-typical kid out on their own. Our best option for summer care is the local parks and rec kids camp. This is staffed by recent high school grads and college kids. They are adequate babysitters, but that chasm of typical to non-typical is never more apparent. My child lives in the moment. Every night they ask me "can you talk to him about not wandering away" and I explain that he wont understand the next day and to just hold his hand...what to do during the summer, my neverending nightmare of please let him be OK when I pick him up.
Hi Rob, like you, have been lost in my head, hubby's cancer battle. I'm so happy that Schuyler loves the summer!! Pools were invented to give us parents a much needed respite :>)
Years ago, I was working P/T while my son was in his special needs school, I got caught in traffic, and panicked, his bus would get to the house before I did. He was only 4, and even with careful instruction, would have no clue what to do if I wasnt there. It was a horrendus 10 mintues, and luckily, my neighbor/landlord got him. He normally wasnt home at that time.
shortly afterwards, I quit this job, had no backup in case this happened again. When I worked F/T again, when he was in junior high, I had many stresful days as he and his sister frequently lost their house keys, thank god for my elderly neighbors across the street.
Rob, I recently read your book and really, really, ok, really, enjoyed it.
My daughter (with autism) was sent on the wrong bus by a substitute teacher last year. She barely talks and is easily lost even in familiar territory.
It all worked out in the end, but she was freaked out by the time she got home and it shouldn't have happened in the first place since she told the teacher the right bus number to begin with!
If our regular teachers aren't trained, the bus drivers are less trained and that isn't a comfort.
BTW, who the hell is Boo Radley?
Jenn
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