The basic progression is as follows:

1)  Teach putting on equipment, sliding on one ski, pushing off with the other booted foot.

2) Parallel skiing down a tiny slope a few feet at a time and being caught to stop.

3) Learning the wedge to control speed.

4) Learning the wedge turn, and use of the terrain to stop (turning uphill).

5) Continuous wedge turns.  (Can use the lift at this point.)

6) Wedge Kristies (try to get skis in parallel between turns when skiing diagonally downhill).

7) Advanced Wedge Kristies- getting into parallel immediately after a turn

8) Parallel Skiing-

Do the first part of a turn, not by going into a wedge, but taking a deep breath in and standing up to relieve any pressure on the edges, as a flat ski will automatically turn itself to point directly downhill.

The second part of the turn requires bending at the knee and shifting the weight to the uphill edges by rotating the feet into the hill.

Keep the upper body turned downhill toward your target regardless of the direction the feet are turning in order to store the potential energy in the coiled body for the next turn of the feet in that direction.

Make use of the time you spend on the lifts by practicing the next step in an imitation game format.  For example, you can take turns calling out “french fries,” “parallel,” “pizza,” “wedge” position and have everyone then take that position (at first demonstrate immediately, then pause a moment to see if your child knows without imitating you).  You can have your child point to downhill or uphill, or practice wedge kristies as together you “turn right, ski parallel, turn left, ski parallel, etc.”

Yesterday, we had another crazy adventure.  My poor Dad is so depressed.  I prayed about it and felt the Holy Spirit gave me an inspiration to take him out on fun outings he could look forward to periodically to keep him going.  So I thought, hmm, what does he really enjoy?  Spectacle of course!  No one appreciates a great show like Dad, whether it be magnificent natural scenery, poetry, Fred Astaire and Ginger Rogers, or fireworks.  So I thought, hmm, my kids loved California Adventure’s World of Color, and arranged a time to take Dad.

This soon got complicated.  I conceived of this project in late October when we were still having an Indian Summer.  But by the time I got a date everyone could make plus tickets, reservations for good viewing places (“viewing” is a euphemism Disney marketing came up with as they get a way to make to you pay more to get “viewing,” not “seats” as you stand, unless you’ve got a wheelchair, which we had for Dad), and figured out the labyrinth of rules to get annual passes (yes, I did get marketed into that), the date was set for November.  Unfortunately, the weather was capricious, and though we’d have sunny days most of the time, it always seemed to rain on the days I arranged for the outing, except once when we had a big windstorm instead.  I rearranged all the reservations and everyone’s schedule (poor Vinh cancelled all his afternoon patients three times) to go several times before we finally did  hit a date when everyone could go and there was no rain or wind.  That was yesterday.

As it is now winter, the nighttime temperature are cool.  Yesterday’s prediction was 36 degrees, so I bundled everyone up in ski clothes (everyone, including Dad, therefore was really too hot).  Although we left the house at 3:30 pm for an 8:00 pm show, the traffic was so horrendous that of course, we arrived late, lost our dinner reservations, and Luke got carsick.  Thanks be to Vinh’s terrific guardian angel (and his gift of extraordinary peripheral vision), we got the last half parking space in the handicapped session.  We only had time for a cold picnic outside (but Dad loved the food, surprisingly, which was amazing because he usually can’t find food he likes to eat), and rushed off to the viewing area because you have to get there an hour early even in “preferred viewing” to get a good place to park a wheelchair.  Long suffering Vinh waited with Dad and carsick and fussing Luke (who also had aching teeth from an orthodontic procedure), while Stephen, Peter, and I had a grand time going on the kiddie rides (just my pace, actually).

Peter was so excited.  He loved the rockets, jumping jellyfish, and tornado swings (adorable ride because it follows the theme of one of Stephen and my favorite cartoons about Mickey Mouse tenaciously conducting the William Tell Overture despite a windstorm sweeping his orchestra into a tornado).  He was a great sport as we had to pass up the new Little Mermaid ride he kept pointing to twice as the ride broke down once, and the second time, we ran out of time.  The World of Color show itself was truly spectacular and amazing, but as Peter put it, “Too loud.”  He did however watch, mesmerized, through the whole show.  The coolest part was watching Dad.  Dad enjoyed the show so much, that he got up out of his wheelchair and stood up leaning forward over the railing the whole time so he wouldn’t miss anything.  He absolutely loved it!

Later we managed to catch “Soaring” as we left the park, my favorite ride of all time, that I’ve been dying to take Dad to see to experience flying over California.  He did enjoy it, but said “Too dangerous!”  as we simulated swooping over the waves and went flying with hot air balloons and gliders. (Peter loves this ride and had a delighted grin on his face the whole time.)   When we finally made it back to Dad’s retirement home, Hollenbeck Palms, I asked Dad how he liked the evening, and he said, “Beautiful!  Gorgeous!”  Halleluiah, praise the Lord!

I have to mention one more thing about the evening.  It was a real struggle at the end when everyone was tired to have to get in line again to get the laminations for our annual passes and then to go into Disneyland to find a photographer to activate the passes (procedures that they told us had to be done on the first visit on the passes, though Vinh was so frustrated with Disney crowds, waiting, rules, and procedures at this point, that he never wanted to come back to Disneyland anyway).  Of course, we went to one photographer who told us to go to another who sent us back.  Vinh had really had it by now, and Dad and the kids were pretty tired though still hanging in there.  I made a desperate plea to the long line of people waiting for the photographer.     We stood there with my flapping son with autism and 90 year old dad in his wheelchair, and I asked if anyone would let us cut in front of them in the line?  What happened then was my Christmas miracle.  In that long line of tired people, each of whom had had an entire day of dealing with the crowds and long Disney queues, every single person nodded “Yes, of course.”  So there we were, in the very front of the line, and got our pictures taken, including one of my big little guy struggling bravely to take off his noise cancellation headphones for Disney rules about annual pass photos needing to be taken without any headgear (you could hear the murmur of protest from the crowd, and the photographer did let Peter keep his headphones on).  I waved to those anonymous brothers and sisters and wished them all a Merry Christmas, and they smiled and waved back, despite waiting six photographs later.

So life is good.  There’s so much good in people.  Merry Christmas to you, and God bless us everyone!

Love,

Joyce, Vinh, Peter, and all the Trans

Make two columns on a piece of paper.  Label the one on the left “tens.”  Label the one on the right “ones.”  Give your child some double digit number of pennies to count, say “23.”  As he counts each penny, have him place it in the one’s column in a stack of ten.  As soon as he counts out the tenth penny, have him move the entire stack as a single unit into the “tens” column.    Have him continue counting out pennies “11, 12, 13, …” in the one’s column, making a new stack of ten pennies.  Once he counts out “20,” have him move this second stack of ten pennies as a single unit into the tens column.  Then have him count out the last three pennies “21, 22, 23,” placing them in the one’s column.  Write “How many pennies?” with a blank following, and have him write down “23,” the number he just counted up to.

Then point out the number of stacks of ten pennies in the “tens” column.  He should count “2″ stacks.  Have him write “2″ under the “tens” column.  Then have him count the pennies left in the “ones” column, and write “3″ under the “ones” column.  Point out to him how the two totals match, ie how counting out 23 pennies equals the same sum as adding two stacks of ten pennies plus three single pennies.

You may repeat this procedure with different double digit quantities.  You may also use other small tangibles like toothpicks that you can tape together or tie together with a rubberband into groups for every ten he counts out.  If using cheerios, you can place them in a small dixie cup (make your ten’s column fat enough to line up all your cups into).

Eventually, have your child count out a certain double digit quantity of pennies or other tangibles that you specify out of a large pile of them.  For example, you can hand your child a jar of pennies, and ask him to give you 17 or 38 or 89 of them.  Eventually, you can substitute a dime for every stack of ten pennies.  He’ll really understand that a dime equals ten pennies, and have a better understanding of the meaning of the value of different coins.

So when Peter’s friend Mark came over to play, that’s what we did.

As soon as he stepped in through the door, Mark wanted to go back outside.  Gorgeous day, clear blue skies, of course!  So we did.  Peter and I showed him and his sister Lizzy our little kitchen garden, which we planted right outside our front door.  May not be the most elegant place to plant a vegetable garden, with corn stalks lining the path and pumpkin patch instead of decorative flowers (though we have roses too!), but that way Peter and I can work on our garden as we go in and out the door.  It doesn’t have to be an “event” just to get our shoes on and trek out to the back.

The garden is it’s own advertisement.  It drew Peter’s little brother Luke out of the house away from his computer games.  He came running out, eager to join the harvest.  We had a contest of sibling teams to see who could find all three baby pumpkins first.  I had Peter take a picture on my iphone of each pumpkin to be sure he really was spotting the pumpkins Luke would hastily point out.  Mark and Lizzy won and got to have first picks of which carrots to pull out of the ground.   We had a similar contest with finding ears of corn to harvest.  Luke luckily has been carrying around his foam sword which was part of his knight Halloween costume.  Luke used it to whack leaves out of the way, and it came in handy as a pointer for Peter.  The kids paired off to pick the string beans together.  Lizzy would hold the stem while Mark plucked and handed beans to his dad who would place them in his pocket.  Lizzy thought the red Swiss chard looked pretty neat, so we harvested some for her mom.

Back in the kitchen, we baked pumpkin bread, practicing cooperative egg cracking (even squeamish kids can whack the egg with the dull end of a knife if the parent will then dispose of the eggshells), “close your eyes and guess which whiff is the cinnamon,” and decorating pumpkin muffins individually for each member of the family (“I wonder which toppings your dad would like?”  “Look, Mark, Lizzy’s pointing to the dried fruit.  Do you think she wants some of that on her cupcake?”  I had Peter play the game nonverbally, so he’d have to attend to which toppings I pointed to with just my eyes.)  The kids played “Chutes and Ladders” and read a book about seed to pumpkin while they baked.  Mark took dad’s right hand, and Lizzy his left, and they frosted chocolate cupcakes as a three headed unit, with Mark therefore only having the use of his right hand and Lizzy her left.  Before you knew it, the bell went off on the oven, and we had cheery pumpkin muffins to pack off as well as fresh vegetables to show mom.

As our guests left, passing through the garden again to get to their car, I felt the warm glow of autumn inside and out.  The only thing better than having a fall garden to harvest is to have friends to share it with.  I had to ask for it, but I even got big hugs from my little friends.  Real hugs with big smiles! I felt like I made off like a bandit.

I went back into the house and put on a big pot of soup.

Peter used to love trick or treating. He didn’t much care for putting on a costume, but he would dutifully put up with putting on a simple magician’s cape and hat in order to grab the cheery orange pumpkin he used to collect his candy in and head out the door. This year, possibly because he’s growing up and is 12 years old, he was less enthusiastic. His little brother Luke at seven however was keen to go trick or treating, so Peter went along. Once we got started, Peter seemed to warm up to it, and stuck with Luke who was determined to clean out the neighborhood. When we finally returned home however, I could see he took off that costume and plopped down that pumpkin with a sense of relief that Luke had finally had enough.

I figured we were lucky to have squeezed in one more night of reasonable fun trick or treating with the two brothers, and next year Peter would be done with going out on Halloween. He could always move on to passing out candy at our door. But we were to enjoy one more bonus from our trick or treating efforts.

The next day, Peter naturally was quite interested in the contents of his pumpkin. We dumped out the candy and sorted it into “chocolate” or “not chocolate” piles. (I would hand him one candy at a time and ask “chocolate, or not chocolate?”, and he would say the answer and put it the correct pile.) Then he sorted each pile into “hard” or “soft.” We filled in a table:

Texture                  hard                    soft                      # of candies
chocolate                 3                         11                                  14
Not chocolate        4                         14                                  18
Totals                        7                         25                                  32

Peter got to practice using the word “not” (“not chocolate”), attending to multiple cues (“How many soft chocolate candies did you get?” “How many hard, not chocolate candies did you get?”), and adding in word problems (“You have 11 soft chocolates, plus 3 hard chocolates makes altogether how many chocolates?”), and carrying over in double column addition (chocolates plus not chocolates, hard plus soft- he watched me demonstrate, then checked it by counting the tangibles).

To my delight, Peter was really into this activity. I do believe he enjoyed sorting and counting the candy considerably more than collecting it (which had required putting up with the hissing noise of dry ice mist sprays and having to say many thank you’s). Especially since we had to practice subtraction too, of course! (“Eleven soft chocolates minus the three you just ate equals?…”)

On Friday, we went to Disney Animal Kingdom.  The medieval Popes commissioned great works of art in their day, and I guess in our day it’s Disney.  That enormous Tree of Life in the center of the park is amazing, covered with a huge frieze of carved animals.  The animal exhibits are artistically incorporated into the attractions and themes of the park, with a terrific African safari to show off the animals of the serengeti, and the tigers and komodo dragon displayed within the ruins of a maharaja’s beautiful palace.  The park was crowded even in October, but the weather was perfect, and if you remember to get your disabilities pass, the lines will be much less of an obstacle.

On Saturday, we went to Sea World.  Be sure to get your pass straight away when you enter, because this place is spread out and enormous.  I had to jog several miles back from Shamu’s village to the entrance to get our pass from Guest Services and then back again, and prayed the whole time that Peter’s teenage cousin Nicholas would be okay watching him.  Peter was a good sport about watching the Nautilus and Shamu stadium shows, and we ended with the Dinosaur area rides.  He wanted to try a roller coaster, but ran away right as we approached the front of the line.  Lukie did not like that after waiting, especially as Peter wanted to go right back to try the roller coaster again.  But he understood when I explained it was now Lukie’s turn to choose.  So Peter patiently endured the Triceratops spinning ride, and then raced back to try the roller coaster again right before it closed.  We did make it, although Lukie complained the whole time that it would be too scary.  In the end, both kids loved it and agreed it was their favorite ride of the day.  I even got Luke to thank Peter for being brave and having us all try it!

On Sunday, we went to Epcot.  Great Mission to Mars ride.  A rare opportunity to explain to your child what the “earth” is when you see a globe.  Terrific “Use of the Land” boatride viewing creative agricultural methods- another good educational opportunity.  Of course, the “Soaring” ride over California is the best- pure Disney magic!

On Monday, we went to an amazing place called Discovery Cove.  The noisy waterfalls are problematic if your child has hyperacuesis.  Peter tried to hold himself together, as he understand he couldn’t wear his noise cancellation headphones in the water, but finally burst into tears because of the loudness.  But as a credit to his fortitude and will power, when I brought out the headphones in a zip lock bag, he only put them on in the shallow water for a minute, and then determinedly put them back into the ziplock.  He wanted to enjoy the water!  Later, right before our dolphin appointment, a man accidentally shoved Peter with his elbow so that Peter’s snorkel poked his eye, and it hurt so much that Peter dissolved in tears.  However again, he pulled himself together, and ran into the water to meet his dolphin. Peter is so brave.  He loved the dolphin and even gave it a quick kiss!  He let go when the dolphin tried to give him a ride, and that terrific dolphin then turned around to go back to get him!

The last day was arguably the best.  We went on the St. John River Cruise, a 2 hour (quiet) boat ride on the emerald waters of this beautiful river, lined with graceful cypress dressed picturesquely in draping Spanish moss, spying alligators, osprey, ibises, and great blue herons.  Suddenly we came upon two big gray boulders, with a smaller gray boulder next to them.  Then appeared two big pairs of lips and a smaller pair, and down went several clumps of sea lettuce, into the tummies of a pair of manatees and their baby!  These gentle, slow, curious and peaceful big guys get to weigh 3500 lbs, and love the warm waters of St. John because of the natural hot springs at the headwaters.  At the end of the tour, the captain pointed out the direction of downtown Orlando and downtown Disney.  As he put it, “But I want you to realize, that now you have seen the real Florida.”  So true.  Nothing compares with God’s natural creation.  The wetlands of Florida are truly beautiful.

On the plane back to LA, Peter and I talked the whole time about our adventures.  I went through the photos we took on my cell phone, and we wrote little journal stories about each day.  For example, we would put a big picture title like “What I Saw at Disney Animal Kingdom” and Peter would fill in the three animals he like the best on a simple writing template I scribbled in his journaling spiral bound notebook.  He would end by drawing in happy faces, rating the day with the number of them he put down.  We wrote some short social stories about the benefits of having fortitude with the waterfalls, being patient at the roller coaster, and being fair and taking turns at the triceratops ride.  I had him fill in the blanks on a “when, who, what, where, why” table I made of one of our outings.  More details on how these in my book… (see latest post on my publishing woes)

So that’s Orlando for you through the eyes of this family. The best part of course is to see beloved family, doing well, and looking well.  We are so grateful and full of joy that our own Peter manatee was so full of curiosity and had the courage and fortitude to enjoy all the new sights and make it through all the new sounds.  If you go to Florida, October is a great month to visit.

Blessings!

I guess on one level you might call that a success, but it doesn’t feel like that to me.  Emotionally, these episodes send me on a tailspin.  Cognitively, I might understand that it takes too much effort for Peter to talk to verbalize when he’s upset, so he hits.  But instead I just feel attacked.  “He doesn’t love me.”  “He doesn’t appreciate me.”  Those are the immediate feelings I feel.  My immediate reaction is defensive.  “Then I guess he doesn’t deserve all this self sacrifice.  I need to step back and protect myself.  I should invest my love and energy where it will make a difference.  If this is what I get, it’s not working.  It’s not worth it.”  So on and so on goes the negative spiral of thoughts, as I talk myself into thinking both Peter and I are failures, and all our work together hopeless.

Usually, at that point, my critical superego intervenes, and says, “Cut it out!  Why do you have to go to defending your rights first and foremost, before helping your child?  Stop feeling sorry for yourself!”

But that doesn’t help.  You can’t flog a dead horse.  When your heart is hurting, words of self recrimination might make you stagger to your feet and carry on a little bit, but they won’t give you the grace you need to finish the race.

And so I just pray.  “Lord, help me.  Holy Spirit, it’s you or nothing.  I haven’t got anything left.  I’m bankrupt.  I don’t want to love him anymore.”

The Spirit always answers.  Very softly, and sometimes it takes a few days, especially when my heart is more rebellious, or I don’t try to be still and listen.  Today, I can just tell you I know I can’t help but love Peter.  I’ll always love Peter.  Peter’s got my heart.  That’s a gift from God, and I couldn’t change that even if I wanted to.  Which of course, I don’t. 

So I feel very blessed today.  Because He reassured me that my love for Peter doesn’t depend on me.  It doesn’t even come from me. It’s not my gift.  It’s God’s gift, thank God, because He’s a lot more dependable than me.     

So now that I’ve calmed down, I can think through this “behavioral management” program more objectively.  I guess it would have been more helpful for me to give him the words he should say instead, like “I want chicken first!”  What fires together, wires together.  But I can’t think that fast, and I didn’t catch his hands fast enough.  When he already delivered the hit,  I couldn’t just reward the hitting.  I suppose next time, I could say “No hitting!  Say ‘Sorry’.”   Then if he said “Sorry,” (which he probably would as Peter is not oppositional by nature), I could try to teach thus, “Ok.  Next time, say, ‘I want chicken first, please!’”  If he said this, I would reward with a small piece of chicken, and wait for him to eat it, and ask for more.  Then I’d be ready with a small portion of veggies, and a small last reward of chicken to show him, and say, “Veggies first, then chicken.”

It’s never too late.  I’m sure there’ll be a next time to practice this.  The difference after today, will be that perhaps I can say, “Thank you God, for this next time.  For another opportunity to train my child in your loving ways.”

A terrific occupational therapist named Susan Spitzer suggested we get Peter a body sock, a big stretchy breathable bag that Peter could hide inside and stretch his limbs for proprioceptive input.  He loved it, but wouldn’t come out.  So Belinda, his super intuitive ABA therapist, came up with a very cool game I want to share with you.

She had been doing a math lesson with him (counting by 5′s) when the sensory craze hit, and he dove into the body sock.  So she had him tak e one end of the sock, and she took the other.  They pulled tug of war back and forth as they took turns counting by 5′s.  She made it cognitively very automatic and easy for Peter by counting the tens out loud so he only had to add 5 to each number she said out loud.  So Belinda would pull and say 10, and Peter would pull and reply 15; then she would pull and say 20, and Peter would pull and reply 25,etc.  They counted up to something like 300! as Peter enjoyed the game so much.  Best of all, Peter’s sensory craving was satisfied by the end, so he came up to the table to work happily. 

The game is a good example of what Susan told us, “Try inserting a cognitive demand into the compulsion.”  I speculate that that engages the frontal lobe which gradually takes overrides the sensory compulsion, especially as the sensory needs are being met.  Managing this in the context of relationship, with the fun of pulling back and forth, engages affect which drives motivation.  The result is a happy, regulated, connected kid with frontal lobes primed to learn some more!