Comments on Fighting Monsters with Rubber Swords: Trust

Rob, I recently read your book and really, really,...

2009-07-18T21:52:16.651-05:00

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

Hi Rob, like you, have been lost in my head, hubby...

2009-07-15T10:22:46.435-05:00

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.

I know that fear of sending your non-typical kid o...

2009-07-14T20:37:14.354-05:00

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.

So many of you have the problem of "who"...

2009-07-10T15:26:16.325-05:00

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!

Yeah, that "who gets the kids" is a bit ...

2009-07-10T10:50:07.168-05:00

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.

The cover of the German edition says: "Why d...

2009-07-09T22:17:59.907-05:00

The cover of the German edition says:

"Why don't you speak?"

"A father tells of his life with his mute daughter."

I just enjoy your posts so much! Like a perfect wa...

2009-07-09T20:08:19.597-05:00

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).

Who are all you indignant Boo Radley groupies, any...

2009-07-09T19:44:46.575-05:00

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?

Oops! Sorry. Meant to finish that and get to the...

2009-07-09T12:49:46.050-05:00

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.

Boo Radley wasn't harmless folks. He killed t...

2009-07-09T12:40:08.521-05:00

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.

Yeah -- that question of who gets the kids is a re...

2009-07-09T12:08:17.557-05:00

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.

This post motivates me to become a better teacher....

2009-07-09T11:29:58.460-05:00

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.

On the deciding who gets the kids thing: My aunt w...

2009-07-09T11:05:42.423-05:00

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

Hi Rob I think your post points out one fundament...

2009-07-09T10:46:09.540-05:00

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!

we have always wrestled with "who will get th...

2009-07-09T10:32:00.210-05:00

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...

Didn't Boo Radley turn out to be harmless, eve...

2009-07-09T10:10:37.775-05:00

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.

Yesterday, I watched Hannah board an airplane at D...

2009-07-09T08:38:25.857-05:00

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.

I'm happy to see you back here and sorry to he...

2009-07-09T08:15:42.534-05:00

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.

I am constantly frustrated by the little things of...

2009-07-09T02:12:52.567-05:00

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.

Yeah, I don't want this to sound as rude as it...

2009-07-09T02:05:54.726-05:00

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 thought the point of Boo Radley in that book was...

2009-07-09T00:10:30.169-05:00

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.