When Homeschooling and Han Dynasty Men Collide with Technology

So, this morning Oliver and I were reading in his History of the World book about China in the seventeenth century -- while the Protestants and the Catholics were battling it out in the Hundred Years War, the Manchus were dictating to the Han Chinese about their hair (shave your forehead, grow a pigtail). I asked Oliver to use his iPad and pull up an image of a Han Chinese, and being dyslexic he spoke into the device and we got this:

Evidently, Siri or whoever the heck inhabits the iPad, misunderstood Oliver and gave us some hot Chinese men. Hilarity ensued, and it was hard going to get back on track with the historical executing and plundering and conquests.

There's some larnin' going on in these parts (and not pants!).






Good Lord. I imagine someone is blocking my post as we speak --

Goddess

this post is dedicated to my friend S.S., another goddess of

non-verbal communication

That's a small lucite square that I found in a gift shop, years ago, on the marked-down table. What are the chances? It's kind of ugly, but it's also kind of perfect. I often compare my life to that of a tightrope walker, and this goddess appears to have stumbled but is catching herself just in time. This week I have that weirdly called IEP where I suppose I'll be going head to head with Mr. Red Who is Purple, the speech and language pathologist who mentioned that he wasn't going to recommend that Sophie continue to receive AAC (alternative and augmentative communication) services from a non-public provider. According to Mr. Red Who is Purple, Sophie doesn't respond to the iPad. That this is total bullshit doesn't need continued explication here. It's total bullshit. While her "response" is not always consistent, the iPad has become a fixture in her life, tying her to her classmates socially, allowing her to participate in her classroom activities, providing her with entertaining and accessible games and things to watch and interact, and allowing her some modicum of communication.

Mr. Red Who is Purple is a gentle and unassuming man, at best, a Luddite in the middle and an utter joke at worst. The other order of business will be to strike out the strait-jacket like device that was provided to us last spring for Sophie to wear on the bus home. The fact that it was entirely the wrong device and entirely inappropriate for Sophie as it's intended for children who pose a danger to themselves and others by disruptive behavior in the bus was enough to send the LAUSD bus division into a clusterf&*$k of hilarious proportions, and the only way they will now allow Sophie to ride the bus without it is to hold another IEP to strike it from the record.

Do you follow me or have you run screaming from the room?

Anywho.

In the early hours of the morning on Thursday, I will set up my tightrope in the dark and gloomy conference room at Sophie's high school. I'll strip off my jeans and tee-shirt to reveal my worn and slightly ragged leotard. I'll lace up my ballet slippers, adjust the top of my leotard to better showcase my cleavage, stick a chopstick in my hair to use, later, as sword, and powder my hands. I will set this small lucite square in the middle of the conference table over which I will walk and dance and twirl and tarry, my flags waving over the the red and purple and black and white and brown heads below.

A certain mad rectitude

Here's Sophie, playing on the iPad with Saint Mirtha. It's Saturday and it's hot here in the southland. Oliver and I got up early this morning and drove into the valley where it's even hotter so that Oliver could try out for fall baseball. We decided to try a different league this year as the one we've been a part of for so long is sort of, kind of, getting on our nerves. There are too many politics, too many people who take themselves far too seriously, and while I expect that's true of most baseball leagues, at least we won't know anyone in this one and I can be oblivious because that's what I'm seeking these days if you haven't noticed. I picked Henry and his friends up from their first high school dance last night, and the car was electric with laughter and youth and, frankly, normalcy. I'm grateful that Sophie has an iPad this morning and that she can use it, however inconsistently. I'm grateful that I have Saint Mirtha here on Saturdays so that I can take my boy to try out for the sport that he loves. And I'm grateful that Henry is happy in his new high school, going to dances, raucous with his friends, a life ahead of him.

Here's a poem:

Say It Straight

What we would
and what we can say
stray as in a dream;
a certain mad rectitude
creeps in, by which something simple as an apple
can never be determined
wholly edible.
The crisp act is deferred,
the object blurred by scruples.
The more we cherish clarity
in principle, the more it is
impossible. Will enamel
ever strike the fruit?
Will Eve grow wild and forgivable?
For it's unlovable
to talk too long with snakes,
whose reasons fork
the more the more
she hesitates.

Kay Ryan, from Flamingo Watching, 1994

Reader, I know you think I'm not the gratitude kind of blogger, but let's relent and you tell me what you're grateful for today.

In my spare time, while lounging,

I helped to produce a webinar that was recorded in January with Project Access and The Epilepsy Foundation of America. Using Technology to Communicate with Your Developmentally Disabled Child ** features my friend and colleague, Jennifer Bertram (the mother of a child with both autism and epilepsy) and Cindy Cottier, an extraordinary speech pathologist who specializes in augmentative communication technology here in southern California. Jennifer and I share our personal stories and successes with Cindy, who provides an in-depth view of various communication tools and explains how the iPad, in particular, is used as a communication tool for children and youth with developmental disabilities. There are wonderful resource pages and tips on portability and hardware. You can listen to the pre-recorded webinar by clicking this link (there is no need to pre-register, and it's free!):

http://connect.epilepsyfoundation.org/p32641212/http://connect.epilepsyfoundation.org/p32641212/

On February 14th, we will host a live Question and Answer session -- Cindy, Jennifer and yours truly. The Q&A is also free, but you do have to pre-register. Here's the link to do so with information:

 http://ncpawebinar2.eventbrite.com/

Finally, Julia Roberts (not THE Julia Roberts, but a far more interesting one!) has been kind enough to help spread the news on her wonderful website SupportforSpecialNeeds.com . You can access the webinar and the Q&A links there as well!

Finally, please share this information with as many people as you can who might benefit. I would so appreciate that -- and will allow you some time on my couch with homemade bonbons if you do so.

** I apologize for the less than stellar sound quality of the recording. Project Access is working on improving the link, and hopefully it will be soon.

Yes No

Sophie has been working with and playing with her iPad for nearly a year, now, and the going is rough and inconsistent, but there are times when it all bursts forth, when those neurons connect and don't spark or combust but rather hum with illumination. Yesterday was one of those days when Sophie got home from school and collapsed onto her bed, pulling her legs up under her Indian-style. Oliver lay across the foot of the bed with all his papers from his first day of school, chattering to me about what he did and what they were going to be doing. When he stopped talking for a moment I wondered aloud what Sophie's day might have been like and then got up to get her iPad to find out. Sometimes, when her aide remembers to, she'll record Sophie's "day" into the iPad so that Sophie can "tell" me. Yesterday, probably because of the chaos of the first day, she did not, so I went to the YES NO screen.

Basically, this is a screen with two boxes, one green and the other red, that say YES and NO. When you swipe or tap the YES, you hear yes, and when you swipe or tap the NO, you hear no.


Got it?


YES       NO


And can I tell you that we had a real conversation yesterday? It was a conversation that inspired Oliver to stop chattering, look over at us in utter amazement and yell, 


Sophie, you're on fire!


Here's a bit of it:


Me: Sophie, did you have a good day at school today?


Sophie: Yes

Me: Did you see your friends?

Sophie: Yes

Me: Was it hot today?

Sophie: Yes

Me: Is Henry in the room right now?

Sophie: No

This is when Oliver looked up.

Me: Is Oliver in the room right now?

Sophie: Yes

Me: Is Valentine a cat?

Sophie: No

Oliver is sitting up now, his eyes as round as saucers.

Me: Are you smart, Sophie?

Sophie: Yes 


Sophie, you're on fire!

Communicamp

This is a photo of a boy's finger, attached to a line that activates a switch. This boy uses his brain, his remarkably damaged yet powerful brain to move his finger, to push the patch, to activate the switch and thus to communicate.

Powerful.

This tree, growing on the bluff that overlooks the Pacific, frames the area where Sophie and her fellow campers eat lunch with their teachers and aides each day of Communicamp. It reminds me of a passage from one of my favorite books, Changed by a Child, by Barbara Gil:

A relentless southwest wind blows in the Laramie Range of Wyoming. It has blown for eons, scraping the mountains bare of soil, carving out the landscape. It causes trees to grow at an angle and lifts into the air things that ought to stay on the ground. It complicates all manner of human activity. People who live there successfully have reached an accomodation with the wind; some who couldn't, went insane.

Disability is a steady west wind in our lives. It permeates our existence, altering the topography of our days and causing our family and our life to grow at an angle. Without judging the wind as good or bad, we can observe the truth of it, acknowledge the force of it in our lives, and take the measure of our accommodation.

This is Millie, Sophie's aide who picks her up each morning and stays with her at camp, a woman who has worked in Sophie's classroom at her high school all year but who is surprised and thrilled at all Sophie can do at Communicamp. I am filled with gratitude for the loving care Millie has shown Sophie and for all that she's been open to learn. I hope that she will pass it along to Sophie's regular classroom teacher and aide.

Sophie is using the iPad as her main communication device, and the two teachers program it so that she can participate in the games and exercises that the entire group is engaged in doing. There is music and movement and laughter and smiling. When Henry, Oliver and I visited last week, we marveled at the kids and what they were accomplishing.

Sophie can't really use her hands effectively at all, can't point and certainly can't type. But she'll swipe at the iPad, and she is beginning to "get it."

Here, Oliver is participating in a game with Sophie. She is the conductor and swipes the picture of the instrument on her iPad. It's voice-activated, and Oliver must listen to what Sophie picks and then pick up and play that instrument. Sophie actually smiled during this, something that she does only rarely.

The group of students at Communicamp ranged in age and ability. None were verbal that I saw or heard, but all of them were working on some alternative means of communicating, using various devices like Big Macs, switches, computers and iPads. What happens when you see people like this, struggling to communicate, to express their wants and needs and answers to questions is a profound alteration in one's psyche. It's about nothing less than what it means to be human.

The camp is held at the Elk's Lodge in Redondo Beach. On their website, it says that The Benevolent and Protective Order of Elks Lodge 1378 offers community service and fellowship. I am filled with gratitude for this beautiful place, for the teachers of Communicamp, for the aides and for the new friends that Sophie has made.

Day One

The fun never stops over here. Although the house is quiet, I'm not -- at least not on the inside. It seems that I have to go get some repeat screening -- testing of the annual type -- the words that all women slightly fear on their annual: I wouldn't worry about it, but please come in tomorrow for another look. If you're the praying type, please send one up and around, because I really don't have time for this sort of thing. :0

On another note, I read this in the quiet this morning and wonder if I might craft a bit of a retreat of my own in the day or so that I have left before The Boys come home. The idea of spending a week or so in the Italian countryside to do nothing but read and perhaps eat good food and take small walks -- well, that sounds like paradise to me. If I do so at home, I can enjoy our glorious weather, read the stack of New Yorkers and finish the Bonnie Jo Campbell novel. I might even crack the new Ann Patchett.

And I guess I'll finally chime in with the scandale over at the blog Marissa's Bunny, a site that I've directed my readers to several times -- the author, Mike W. has a baby girl (at least we think he does, although who knows now?) with infantile spasms and recently offered free iPads to many, many families who have children with special needs. Over the last couple of weeks, I was informed by a good blogger friend that she and someone else had unearthed some unsavory details about Mike and that they suspected the whole thing was a scam. It appears that Mike has a criminal record for similar scams and the whole giveaway appears to be another one. The special blogsphere (I hate that word) is freaking out -- for some good reasons, but I, being a more jaded and perhaps bitter sort, feel my eyebrows in a permanently raised position. It annoys me to no end that I sent people to Mike's blog and encouraged them to apply for the giveaway; it also annoys me that I had several private email exchanges with Mike himself, and he prevaricated and basically lied to me about what was going on. Both Ken and Heather have masterminded a Mission iPossible to get iPads to those kids that were promised them -- so hop on over and visit.

As far as the rest of the freak-out, I said to Ken over at Blogzilly and Heather at Little Wonders, I'm just sitting here on the dock of the bay, watching the tide roll away. 

iPad Giveaways!

Bob Barker of The Price is Right

Come on Down! 


Marissa's amazing father, the writer of Marissa's Bunny is having another incredible iPad giveaway for special needs kids. Marissa is a beautiful little girl with infantile spasms, the hideous seizure disorder that Sophie was also diagnosed with many years ago. Marissa's father has become a staunch advocate not only for his own daughter but also for all children with special needs. With the help of his employers and other generous folks, he has already given away numerous iPads and has a new offer.


Go HERE and read all about it.


Good luck!

No One Gets Left Behind

I had to put on my Pretend Like I Have High Expectations for My Daughter's School hat and meet our private speech pathologist (the one who is helping me to implement the iPad into Sophie's life) there so that she could do a mini training of the iPad with the powers that be at the school. When I got there and ushered her through the iron gates, I changed into the Pay No Mind to the Dark and Gloomy Tunnel/Hallway at the End of Which Lies the Classroom hat, and we walked down the hallway cheerfully. I then changed into the Pay No Mind to the School Aide (not Sophie's) Who is Sitting on the Sofa and Texting hat which was quickly replaced by the Remember that this Place is Only a Small Part of Sophie's Life hat. I kept that hat on for the rest of the time.

Make of this what you will.

iPad Mania

I'm still sick, but I wanted to tell you about a pretty fantastic giveaway over at Marissa's Bunny. Marissa is a little girl who suffers from infantile spasms, the same seizure disorder that my Sophie was diagnosed with nearly sixteen years ago. Marissa's father is a terrific advocate for not only his daughter but for all children with seizure disorders and other healthcare issues. His company is going to give away FIVE iPads in a merit-based contest. Read about it here.

Rainy Sunday

I've been sitting in bed nearly all morning, drinking coffee and ignoring my children by only uttering yeahs and neat when they ask me something or show me something. I'm reading Keith Richards' Life and Susan Casey's The Wave and if there are two subjects completely opposite to my life right now as I live it they might be rock and roll as practiced by the Stones and surfing big waves as practiced by Laird Hamilton and native Hawaiians. Life, though, makes me think of my first husband and all the records we listened to, first in our rented farmhouse on the outskirts of Chapel Hill and then the rented pentecostal church in east Nashville where we lived once we were married. How so much time and life can have gone by is weird --

This is what the rest of the family is up to --

Spanish homework

the creation of a Football Shrine -- I didn't ask for details

Valentine, wishing that someone would pay attention

iPad  book

iPad

Sophie can't really isolate her index finger and point, but she can swipe pretty well and really responded to the first program we downloaded called Baby Chord.

This is all just so exciting!

A Blessing

A good friend from New York City -- the kind of friend who I speak with only once a year or so but who I feel connected to beyond words -- sent Sophie an iPad in the mail. I don't know what to say other than thank you.

Thank you, Jane.

The universe shifts so subtly sometimes, it takes my breath away.

A Blessing

Just off the highway to Rochester, Minnesota,

Twilight bounds softly forth on the grass.

And the eyes of those two Indian ponies

Darken with kindness.

They have come gladly out of the willows

To welcome my friend and me.

We step over the barbed wire into the pasture

Where they have been grazing all day, alone.

They ripple tensely, they can hardly contain their happiness   

That we have come.

They bow shyly as wet swans. They love each other.

There is no loneliness like theirs.   

At home once more,

They begin munching the young tufts of spring in the darkness.   

I would like to hold the slenderer one in my arms,

For she has walked over to me   

And nuzzled my left hand.   

She is black and white,

Her mane falls wild on her forehead,

And the light breeze moves me to caress her long ear

That is delicate as the skin over a girl’s wrist.

Suddenly I realize

That if I stepped out of my body I would break

Into blossom.

-- James Wright

Bless me, for I have sinned

I am coveting my neighbor's iPad.

Especially after reading this article. Thank you, Erika, for bringing it to my attention!

Good thing I'm not a kleptomaniac.

I'd have two things to confess.