True Story:

Mom:  "Jerry, please don't swing that stick at Louis."  (NOTE:  Loius is our cat.)

Jerry:  "But if I hit him maybe he will break open and candy will come out."

Two Words - "Run Louis!"

It's been a while and so I'm going to pack a few updates into one here. 

Let's start with regression.  It stinks.  Dr. Rodgers, Jerry's neurologist, asked for a progress report from Miss Michelle, his speech therapist to see if genetic testing might be warranted.  She suggested maybe there's more to Jerry than Asperger's.  Anyway, though Jerry has made some progress, there is definite concern over some noted regression as well.  So now we are waiting to see if Dr. Rodgers will order the genetic testing.

Now on to Wal Mart meltdowns.  They too, stink the big one!  I only needed about ten things today.  That was all.  Small, short trip.  Do you know how long it takes to shop for only ten things when you have a seven-year-old melting down in every aisle, kicking his shoe off, walking in circles in front of shoppers trying to push their carts by him while doing their best not to stare...at him or his obviously "bad-parenting 101" mother? 

ARRGGHH!  It was not fun!  Then we get out to the parking lot to finally head for home and, while I'm struggling to get a 35 lb. bucket of cat litter in the van, Jerry drops the picture he drew and has been carrying all through the store with him and the wind picks it up and starts to blow it off.  "Ok God, really not funny now."  To the ER attending..."Well, I was trying to catch a piece of paper while juggling 35 lbs. of cat litter."  I did manage to stop the paper...and get the litter in the van...not gracefully I might add!

And why the meltdown you might ask?  These days....why not is a better question.  Actually this one was triggered by a Subway in the store, which reminded Jeremiah that he "might" be hungry.

That brings us to less OT...not because Jerry is doing so well that he's ready for less, but because he only makes it through 1/2 the session anyway before he shuts down and decides he is just plain finished and will no longer cooperate.  Therefore, we are down to 30 mins. twice a week instead of the recommended 60.  Enough said.

Lastly, our new townhome is fabulous.  Our neighbors are fabulous.  Our neighbor's kids are fabulous.  Then there's Jerry.  Bless his heart, try as he may, he just cannot seem to fit in with the kids here...or anywhere for that matter.  While his brothers and sisters have made many, many friends, Jerry just hasn't.  He rode his bike over to me tonight, face long, and asked, "Mom, why does everyone pick on me?"  His view of course, as I am well aware of his ability to "pick" as well.  Still stinks, once again.

On one bright side, school is going well.  He confidently knows 3 of his letters.  Who's idea was it to make the English alphabet 26 letters long anyway?

We went to Downtown Disney for our son Ben's 9th birthday yesterday.  We had made reservations for the new T-Rex restaurant.  It's similar to the Rainforest Cafe with the exception that the animals are all large, prehistoric, and extinct.  But they are all animated in their movements and life-like, including in their ferocious roars and growls they make.

Now Jerry loves dinosaurs, but I knew we were in trouble when our waitress, while introducing herself, warned us that every twenty minutes there would be "meteor showers" and we would be required to get under our table for safety measures.  The other kids giggled while Jerry stared at her wide-eyed and alarmed like a deer caught in the headlights.

He was already not fond of the noise upon entering the restaurant (including clapping and singing waiters/waitresses celebrating patron's birthdays), but when the lights dimmed low, thunder started clashing, and the dinosaurs raised their vocal levels by at least ten octaves, we had issues.  Jerry immediately started to yell for the dinosaurs to stop or be turned off.  I covered his ears while he sat very stiff and anxious.  Thank goodness we were sitting in the plant eaters section and not next to the twenty foot tall T-Rex!

We vowed then and there to only be there for a maximum of two more meteor showers and so we had forty minutes to get our food, eat, and pay to get out of there.  With the passing of each minute, the poor guy grew more and more anxious.  As soon as the lights would dim, he would lean over into my lap, his head under the table, and cover his eyes while I covered the ear that was not already being closed by my lap.  Once, he was in such a hurry to get under the table and into my lap, he whacked a knife on the table and sent it sailing up over his head and onto the floor...thankfully, not hitting anyone at the table behind us on the way down! 

We did manage to get a picture on the way out.  Can you see how happy Jerry looks?!

The family picture outside shows some relief.

The consolation prize for his making it through dinner was a Build-A-Dino (similar to Build-A-Bear) that he named Hammer Head.  Upon leaving the restaurant, Jerry proclaimed, "Mommy, I like shopping in the dinosaur store, but I don't ever want to eat there again!"  No, really?!!!

Jerry's new OT toy is the body sock, this cool stretchy and transparent nylon "sock" that he can put on, stretch and dance in, roll around in, and just look way too cute in...all in the name of good upper body exercise.

With the new school year approaching, it's time once again to think about Jerry's education.  Though I've successfully homeschooled my other three kids (so far), Jerry is always different.  I've tried everything I did with my other three and none of it has ever worked with him.  My biggest struggle with Jerry seems to be in teaching him his ABC's, the foundation for reading.  In my book, if you can only learn how to read, you can be more independent someday, no matter what your learning challenges. 

So every year since he was four, I set out at the beginning of the year with vigor and stamina, ready to forge ahead and drill those letters into his little memory bank.  And year after year, it's a struggle and a battle and we're lucky at the end of the school year if he can recognize four letters and their sounds...only to forget them before the start of the next school year.  It's so frustrating! 

And now some of Jeremiah's younger friends are surpassing him and beginning to read and my heart just breaks for him as he recognizes their new ability and his lack thereof.    And yes, I know I shouldn't and can't compare Jeremiah to other kids his age, or even younger, but it's hard not to.  I just can't help it.  And don't get me wrong...I'm very excited for my friends, the parents of Jerry's literary friends, but it doesn't change the fact that I'm very sad for Jerry at the same time.

I constantly go back to a conversation in my head that I had with a lady who runs a homeschool fair here every year.  She told me that her son was fourteen before he learned to read and to never give up trying.  It will click someday.  So with that in mind, here we go again.  And though I'll be grateful whenever Jeremiah learns to read, I do hope it doesn't take another six years!!

I do feel a little more prepared this year however.  I feel like I know more about how Jerry learns now.  I understand his auditory processing struggles and his need for visual and kinethetic exercises.  And so we're going to try a whole new routine this year that will hopefully be fun for him while he prayerfully retains what we're focusing on each week.  There are soooooo many things out there that claim to be the best tools for teaching kids their ABC's and to read, and pouring through them was exhausting, but I think I picked out those things that Jerry will best respond to.  At least I hope I did.

We're going to spend two weeks on each letter and here are the things we will do to teach Jeremiah to recognize the letters and their sounds:

• ABC Accordion - This cool accordion made from poster boards has a pocket for each letter so we can put Jerry's work in them.  It's over seven feet long when stretched out and just a neat visual.

• I have the capital letters in paper punches.  I'll let Jerry use the punch for the letter we are working on to make a bunch of little letters that he can glue on the accordion section for that letter.  This is good for his fine motor skills too.
• We're also going to look through magazines for pictures of things that start with the letter we're working on, cut them out, and store them in the accordion pocket for that letter (or glue them on the section).
• We're going to take pictures with our own camera as well of people we know whose name starts with each letter and store those in our accordion pocket.
• I made ABC display boxes and glued them all together onto a poster board.  We're going to look around the house and through Jerry's small toys he likes to collect for things that start with each letter and put them in their boxes.

• Jerry is going to trace and write the letter we're working on every day of the two weeks.
• My girlfriend lent me her Sing, Spell, Read, & Write CD with the alphabet letters and sounds song on it and we're going to listen to it all the way through each week.
• I have a neat book called, "Cut and Create ABC" and it's a hands-on construction paper craft to make for each letter of the alphabet.

• I'm going to put a large white construction paper cutout of the letter we're working on onto black paper and attach it to the back of my seat in the van so Jeremiah can look for the same letter on signs and billboards while we're driving.
• We're going to make a letter worm on the wall with 26 body parts and, after we're done studying a letter, we're going to cut the letter out of sandpaper and glue it onto the right body part on our worm.
• Chicka Chicka Boom Boom Read with Me DVD game once a week. 
• Starfall website once a week.
• With every letter we learn about, we're going to add insects or insect words to our Insects ABC matchbook board.

• I also have the "Chicka Chicka Boom Boom" book and we'll read that once a week while Jeremiah places magnetic letters onto a picture of a palm tree taped to a cookie sheet (so the letters stick) in order as I read the story to him.  Then he'll take them off again in order as they come down the tree.

I'll make the letters using sidewalk chalk on our driveway and then let Jeremiah uses a water spray bottle to "erase" the letters.  He'll be tracing the letter with the water.  This idea was in that great 101 activities book by Tara Delaney that I blogged about a few entries ago.

• Also in this book was the idea to have your child sit while you use your finger to write the letter on their back so they can feel the shape of the letter.  As we learn more letters, I will write the ones he knows on a sheet of paper in front of him.  Then I will trace a letter on his back and see if he can guess by the feel what letter I am writing with my finger.
• Letter Sounds and Learn Letters game from Owl & Mouse once a week.  These are free software downloads.
• Play ABC Bingo game Jerry has once a week.
• Practice making letters in shaving cream on a cookie sheet.
• Watch Letter Factory DVD once a week and play with LeapFrog Fridge Phonics.
• Scaredy Cat Reading System.
• We're going to put the letter on the floor using painter's tape for Jeremiah to walk on, line toys up on, and just plain old see everyday.  We did this last time too.  Here is a picture of Jerry with his bouncy balls on the letter "B".

• And finally, we're going to read, read, read, read, read!!!!!!!!

So, there you have it!  I cannot possibly think of anymore kinesthetically and visually friendly activities to do!  And by doing each of these activities for every letter of the alphabet and on a weekly basis, I'm really hoping the letters and their sounds "stick" this time.  We're not formally starting school until 9/8 so I'll keep everyone posted.

Miss Michelle, Jeremiah's speech and language pathologist, has been working with Jeremiah on prepositions (on, under, in front of, next to, behind).  She uses little plastic figurines he takes from a bag and a box.  She draws a preposition card from the pile, tells Jerry what it says, and then he's to put the figurine in the right place.  Some days he does pretty well at this and then other days, it's like he's never done it before.  That whole short-term memory thing again....uugghhhh!  Of course, some are easier concepts for him than others too, like on and under.

Anyway, we've been working on it at home as well for reinforcement, but it gets old with a cup and action figure.  So I decided to try and get creative.  Uh-oh....watch out!  First of all, I could be considered a Dinah Zike (www.dinah.com/index.php) stalker for how much I LOVE her foldables.  With her resources, you can make manipulatives and resources for teaching your kids that are fun, easy, and hands-on, using paper, cardstock, poster board, file folders, construction paper...  So that's where I started and here's what I came up with.

Using a file folder, I made my foldable.  Then I searched for pictures of playground equipment online and printed them.  I then made the preositions Jerry has been working on in Publisher and cut them out.  Next I printed miniature pictures of Jerry's friends, siblings, teachers, etc..., wrote their names on the backs of the pictures, and laminated them.

Here's how it works.  We lay the pictures of Jerry's friends face down on the table.  He draws one to use.  Then he picks a tab.  When we open the tab, we see the preposition he'll be working with.  Let's say it's on.  Next to the word on is a picture of swings.  He then has to take his friend and put him or her on the swing.

He seems to like this, it's portable so we can take it places as a travel game, and it also helps him practice and remember the names of the people on the picture cards.  When we're done, we store the cards in an envelope I taped to the back of the game.

I made another one with a picture of a farm, complete with pond, barn, mud pit, fenced pasture, farm house, etc...  In a baggie taped to the back of that game, I put miniature farm animals Jerry had with a playset.  Now he can put the duck next to the pond, the pig on the mud, and the horse in front of the barn, etc...

Here's the Dinah Zike book I used for this.

Ok, I was soooo not going to post this, but after reading "A Regular Guy" by Laura Shumaker and her willingness to share the good, the bad, and the ugly situations while raising her autistic son Matthew (including his first erection in church while he was STANDING to take communion), I decided to share this event.  Besides, weeks later, it is a little comical...I have to admit.

I had bought a bra at Victoria's Secret and didn't care for the way it fit.  One Saturday night we decided we'd go walk around the mall for a while and I could return the bra as well.  Now with three boys, we don't all go into Victoria's Secret.  That would be a giggling, pointing, and whispering disaster.  John usually hangs back with them at the Disney or dollar store to look around while I go in alone.  That was the plan on this night. 

The mall was pretty crowded, as it was a Saturday night.  We were approaching the area where Victoria's Secret was.  It was within eyesight, about 40 or so yards away.  I glanced in its direction and signaled to John that I would be casually and nonchallantly heading that way when the scantilly clad manequins in the window caught the attention and eye of Jeremiah.

He let out a loud "WOOHOO", and before either of us could compute what was happening, he bolted at top speed towards the store.  John looked like a deer in the headlights, not knowing if he should be the one to break into a run after him.  The other kids, knowing the embarrassment that was about to come upon them started walking towards a sitting area, away from both John and I.  I couldn't blame them.  I wanted to just walk away as well.  Instead, I sprinted to rescue us all, dodging and weaving my way through shoppers in my way!

I was too late to save everyone who was in or near the vicinity of Victoria's Secret the scene that was about to take place.  OF COURSE the store was having it's annual bra sale and large round display tables full of their wares were all out front.  Now we all know what the bras at Victoria's Secret look like, right?  They're not your regular run-of-the-mill bras.  They're padded, wired, and shaped as if an invisible woman is already donning them.

Within what seemed like seconds, Jeremiah was in the store, had grabbed one of the bras from the table (a huge DD no less or so it looked like on him), and was still hooting and hollering like a banshee.  He turned to face the onlookers at the opening to the store, squated with his knees bent, leaned back slightly, pulled the bra tight across the front of his chest, and began yelling, "I GOT BOOBIES!  I GOT BOOBIES!"

Yep.  It was quite the scene.  I reached Jerry out of breath from my mad dash, snatched the bra from his grip, tossed it onto the nearest table, and scooped him up with one arm like a sack of groceries, all the while with him still laughing and declaring to everyone watching that he's got "boobies".  Onlookers were snickering mostly, especially the guys, but there were a few more repulsed than amused by Jerry's display.  The Victoria's Secret salespersons were not too pleased with his spectacle either, to say the least.

I handed Jerry off to John, who whisked him away to where the other kids were sitting and proceeded to exchange my bra before we called it a day and ended our excursion to the mall, all the while ever so thankful that no one was there that we knew and we would likely never see any of those same people again!

I recently had the great privilege (and time) to read two great books.  The first is by Tara Delaney and called, "101 Games and Activities for Children with Autism Spectrum and Sensory Disorders".

Tara is an occupational therapist and I was skeptical that this book would be full of technical terms and concepts that require an OT degree to read, but it was just the opposite.  It was practical, an easy read, and each activity even had a list of materials needed to complete that activity.  Best of all, the materials needed were items most of us already have in our home.  Like I said...PRACTICAL!  Highly recommend this one for parents trying to work in a partnership with their child's OT at home.

Next, I devoured....in just two days...."A Regular Guy - Growing Up with Autism" by Laura Shumaker. 

Wow!  I felt like one of her friends reading this book and, at times, wish I was close enough to just hug her.  It detailed their challenges and triumphs while raising their autistic son Matthew from the time of his diagnosis (and even before) to the day they went to court to become his permanent caretakers of all future major decisions, financial matters, and needs.  Don't mean to sound like a cliche, but I laughed...I cried...it moved me.  This book is a must read for parents of children on the spectrum.

On a Jeremiah note, he had another seizure last night after dinner.  It was mild in comparson to his last one, probably because he is on medication, but we recognized the symptoms just the same, right down to the throwing up afterwards.  Dr. Rodgers' office is working on getting approval from our insurance for his Trileptal to be name brand from the pharmacy and not generic, often a trigger in "breakthough" seizures.

Still plugging along and I am so impressed at how much more Jerry's learning in a speech program one-on-one in a private facility than he learned in the three years of speech therapy in public school.  We work on his Earobics program every day.  He is working on Carloon's Balloons right now and it's a real challenge for him.  He hears a number of sounds in a row and then has to click on the pictures of what he heard in order before the time runs out.  He has mastered one and then two sounds, but still struggles with three sounds in a row.  He's trying though.  Eventually, the program will add background noises to train his ear to tune them out and focus to process what he should be listening to.

For months now, Jerry decided not to go to Sunday school and to stay with us in the sanctuary.  He was actually crying over the thought of going on Saturday nights.  In church, he was quiet and drew pictures in his sermon art notebook and so we didn't make him go to class.  A few weeks ago, he decided again on his own to give class another try.  Here is a picture he drew this last week of the ten lepers.  The one he circled is the one who thanked Jesus.  He told me about the picture too!  Very cool!

His Concerta was increased to 36 mgs. a day as he has grown five pounds and two inches in the last few months.  We've noticed a marked improvement in his focus and attention span and he has been a real joy to do school with.  Just an update!