Friday, December 26, 2008

Ending 2008 on a High Note

Livie has been stealing the spotlight time and time again over the last few weeks. First, it was the, out of the blue lightning bolt of starting to take herself to the bathroom by herself. We weren't prepping her for it, we had been working a schedule and neither was a school. She just made up her mind, got herself into the bathroom and did it; and she has kept on doing it. Maybe learning how to open door a couple of months ago helped with her confidence. I think I mentioned, we still have to worry about her stimming in the bathroom, in the form of flushing things down the toilet and playing in the shower. But from a 'going concern', she's in a steady state.

The other amazing thing with Livie lately is her communication. In September, she started with a new teacher who is big on signing. So she has started a dozen or more new signs. Along with this, her speech, or more correctly her meaningful sounds have increased as well. Her speech therapist would always be able to P,B,M,D,T out of her in a therapy situation, but we would rarely get them out in a natural situation. Over the last few weeks, a new form of potato stick got her talking. French's used to have her favorite, but they have since stopped making them. These new ones, called Lesser Evil Krinkle Sticks have gotten her to use the sound 'Pa' consistently with me to ask for them...God bless junk food (or not so junkie junk food!).

Now to the cherry on all this, we just recently started her with a new language therapy. First session today and Linda received the shock of her year. The group and Linda were pairing with Livie in the first session, which basically means they were doing everything possible to be her best friend. They were playing in the water in a sink and bringing in various toy animals. Linda showed her and said 'snake'; Livie repeated back SSSS. Same thing with a frog...FFFFFF. These sounds are not in her 'prompted' repertoire, so Linda was understandably bowled over. We're not sure if it's our doctor's methodology or if it's the use of transcranial Direct Current Stimulation along with the therapy. It is way too early to tell, but as we move along on this, I'll bring in more detail.

In any event, it definitely gave us a high through about half of the supposed-to-be 90 minute ride back. After we hit a traffic jam in Brooklyn, all the great feeling left us, we threw out the rule book and started giving her juice; 30 minutes into the jam, we could tell her other new found talent was being threatened. She was getting real upset and we knew why, but I was not pulling over in some graffiti strewn section of Brooklyn to find her a toilet. She didn't make it all the way home and we had a major cleanup somewhere in a residential section of Staten Island. I can't fault her, she really tried, but we can't expect her to make it to 2 hours with a full bladder.

We're still on the high, despite the traffic setback. She is a trooper, a super hard worker; everyone who works with her is impressed with her flexibility, her positive attitude and her ability to hold it together. I am so proud of her and I foresee great things for her in 2009...

Sunday, December 21, 2008

Mentioning Miscellaneous Minor Miracles

We've had a mild shift in the direction of the wind of late and I thought that I'd acknowledge it. My realization that something was working in our favor started out this week as everything going apparently wrong. We had some pretty bad weather in NJ on Thursday into Friday and then again Saturday into Sunday. My mother-in-law had gone home early on Thursday night to avoid the mayhem and was planning to come back Sunday morning to take the three older kids to a local presentation of the Nutcracker ballet.

In the meantime, we have been battling for literally years over our on again off again refrigerator, which of late had been off again (to colorize this thing, it should have come in yellow). Long story short they had ordered a part to 'fix' it and the part was no where on the planet and the fridge had developed new symptoms and was just plain not 'fridging' our food. On a tip from a soon to be sainted customer service rep, we got a number to call to request a replacement fridge. Just like that, we are given the green light for a brandy new fridge to replace our 5 year old, been through a move and the wringer falling apart one. The delivery date: Sunday.

Now the two stories collide as we have a 12:30 to 3 delivery time and a 2:00 appointment with Godfather Grosseimeyer and the Rat King. We're tearing apart the kitchen to make way for the new fridge, when we get the call from mom that she's running late. She was supposed to have been taking the kids to the Nutcracker; now I was going to have to step in as the understudy. Off come the sweats, on go the dress casuals, and off we fly, 15 minutes short of arriving at the 2:00 deadline. Fortunately, the Sugar Plum Fairy was dancing 15 minutes late and we arrive at our seats just as the lights go down; we even had a spare minute to allow Aly to hit the restrooms.

Meanwhile, back at the ranch, Linda looks out the window and sees the truck pull up minutes after we leave, still no mom. She turns to see a stark naked Gracie and a bottomless Livie. She scrambles to make them Rated G just as they ring the doorbell. Mom arrives just a minute or two after they do and they can tag team the dynamic duo while the gentlemen install the brand new beauty.

I have to admit, I got the better end of the deal today. I got out of the house, saw a great ballet, had a blast goofing with the kids to and from the show, and did a command performance of the Angry German Kid Drives a Car on the way home. It was amazing to me that not only we got there on time, but we also got along under pressure. Linda had a more stressful time, but when we got home, that fridge was beautifully cooling down in it's new home.

We've had other near great things happen to us in this magical month of December. My brother-in-law, near-fresh out of Columbia nursing, got a job in a hospital near him. We got our first check for a grant to cover off on Livie's OT therapy. Last but certainly not least, Livie, over the past few days has taken to INDEPENDENTLY taking herself into the bathroom and taking care of business. We have stopped her bathroom schedule and are keeping closer eye on her cues. Now if we could only get her to stop playing in the tub and the shower, we'd be in like Flynn.

If I were a God fearin' man, I'd see a buncha miracles that I'd be thanking Him for all the great things He has moved for me. But, they're all not really miracles, we've worked tirelessly at all these things from pushing for the fridge, to the potty to my BIL's incessant search for a job, it's just the season that allows you to appreciate these things when they happen at this time. Although I think, along with a wry sense of humor, God also has an impeccable sense of timing!



I've had this song running through my head as a result of all this good fortune, it's a non-sequitor except for the chorus:

Something Goes Right: Paul Simon

You've got the cool water

When the fever runs high
You've got the look of love
lightin your eyes
And I was in crazy motion
Til you calmed me down
It took a little time
But you calmed me down


CHORUS
When something goes wrong
I'm the first to admit it
I'm the first to admit it
But the last one to know
when something goes right
Well it's likely to lose me
It's apt to confuse me
It's such an unusual sight
I can't get used to something so right
Something so right


They've got a wall in China
It's a thousand miles long
To keep out the foreigners
They made it strong
I've got a wall around me
You can't even see
It took a little time
To get to me


Chorus


Some people never say the words
I love you
It's not their style to be so bold
Some people never say those words
I love you
But like a child they're longing to be told


Chorus

Saturday, December 20, 2008

Christmas in Africa

If you have not heard the 12 Days of Christmas as done by the A Capella choir Straight No Chaser, it kinda dovetails into my wonderful experience on Thursday:



These guys' story and CD are great by the way, but back to the story. The last part of their '12 days' sings of Christmas in Africa, which is just what the girls' school did. Some (probably now hated) person at the school suggested "Hey, why don't we have the kids put on Broadway's The Lion King!" I just can't imagine the coordination with every class in the school with the decorations; the learning of the parts for all the principles in that play; to the costumes (we all had to buy specific color sweatsuits and they did the rest). Logistically, these people could have moved armies in Iraq and had time left over for lunch!

They had two shows because all parents were showing up. We had 'official' playbills upon entering and a hand-made Pride Rock on the stage. When we had all 50 or so kids with their paras on stage, some signing, some singing, one or two crying, a few waving to their parents, all the swinging and stimming and smiling; I understood the beauty of the chaos theory.

There was lots of great singing from the kids; some wonderful miscues (one child insisted "NO LAUGHING, No Clapping, only cheering...HEY, DID YOU HEAR WHAT I SAID?"). My kids were just extras and were paraded out only a few times, but I didn't really care. I was happy for all the kids, upset for a couple who were having difficulty, and proud of those who stood up, spoke and sang and made it a wonderful show. Our principal said at the beginning: "Most schools like ours won't even try to put on shows like this, but we like to see our kids and our parents surprised and proud at what we can accomplish." I don't know about anyone else in that auditorium, but I was proud of the whole lot of them!

Sunday, December 14, 2008

What Can Happen While You're in the Bathroom

We had a long day today. We had a doctor's appointment in Lon Gisland today and we had to leave at 1:15 PM. It seemed like the powers were trying to keep us from going, so much was happening during the hour before we left, I just had to flesh it out.

Of course, all this happened while Linda was 'prepping' to leave (translation: showering and actually putting ON makeup). She goes in at 12:15, My Mother in Law, Aly and I are conversing when Aly's future 'mommy ear' detects a scream from downstairs that is not the 'hey give me that you IDIOT!' scream. 3 seconds later, Dillan is coming upstairs crying, holding his eyes. "I was playing with this rubber thing, stretching it across my feet and it hit MY EYES!" At first, the holiday wanted my to prompt the Christmas Story line 'you'll shoot your eye out', but by his tone and wailing, I could tell this was NOT the time. The rubber portion had shot across his eyes and we were not sure whether his corneas were damaged.

We spent tense minutes as Dillan slowly was able to open his left eye, and then eventually his right eye without too much pain. There were several moments there that my MIL and I exchanged those "warm up the car, we're going to the emergency room" looks, but they did not materialize. I sat on the couch next to him and felt a sharp pain go into the ball of one of my feet. Normally I would have "OUCHED" and suppressed a curse word, but under the circumstances, I though better of it. I lifted my foot and pulled a centimeter long, needle sharp wire from my feet, almost like a push pin thing. Luckily, it hit one of my callouses and it did not cause any major damage; minor bleeding and I got it out.

OK, eyes getting better, metal shards removed from body parts. I go walking in the hallway and Jason says "Gracie says she has to go POOPIE!" Quick Robin! To the BATroom! Grace's been giving me a hard time in the bathroom lately, but this time, she went right away, no poops, but she did pee. Almost the second she's out, Livie's at my hand dragging me down the hall. I figure, she want to know where mommy is, but she stops at the bathroom. This is VERY unusual for her; I take her in and put her on the potty. BAM! Major incident averted. She is hailed as the goddess of the throne that she has just shown me.

1:05...Linda emerges from the bathroom with no idea that the world had turned upside-down, sideways, major feats had been achieved, major potential medical procedures averted. We ran a little late, of course, but we got there on time; we just HAD to get her up to speed on what had happened why she had whiled away her time primping!

Monday, December 08, 2008

Another Writer in the Family


Well, every time I seem to post about Livie and her accomplishments, Gracie decides she has to get in the game. I caught her in the kitchen copying the words "LOVE SOMEONE WITH AUTISM" off of a magnet on the microwave. Before, I could show what she had done, she had erased the Magnadoodle (fantastic gift for any young kid by the way). She then proceeded to write the bottom word 'AUTISM' again as you see here in the picture. It was ironic, sad and fantastic all in one weird emotion as my wife, mother in law and I exchanged glances.
She then walked into the other room and was quiet for a while, then she asked Linda "Spell daddy". D-A-D-D-Y, then more silence. I walked in, she had gone off to do other things. I said "Who wrote this?" I did not recognize the handwriting as one of the other kids'. "That's got to be Gracie, she just asked me how to spell daddy" Linda said. To translate, L to R/T to B: JAYJAY, DADDY, LIVIE, GRACE, AUTISM
Honestly, her writing does not phase me anymore; she has been writing and spelling out loud for several months now. She will spell out almost everything she sees, and sounds many of the words out. She can spell Mississippi and she only gets a letter or two wrong on antidisestablishmentarianism (just kidding on the second one!). This time was special for us because she had did this all from memory and had written so many things on one board. Like Livies words, I could not pass this up with just a cheer and a clap.
In our world, it's very hard to not be clinical about what our girls do and just enjoy the moment. I just think, if we can only get her behaviors and her socialization better, and work on her scripting and echolalia, she could be AMAZING in kindergarten. No matter what though, she is going to be amazing in school, we just have to fight so that she has the chance to be amazing.

Sunday, December 07, 2008

Lighten up...


I gave in and agreed to setting up outside lights this weekend. We haven't done outside xmas lights since we got here 3 years ago. Now I remember why. Finding them in the attic was one thing, finding the bad bulbs, bad strings, bad polarized plugs that don't play nice with the other strings, all those wonderful things I experienced again, boy did I miss them.


I also brought down Buck and Jane Doe, our 10 year old animatronic lighted dear deer. That is, if you consider a 10 inch movement of the head up and down or side to side to have any similarity to the It's a Small World ride. Problem is that these originally came with eight pieces of metal that allowed you to spike them to the ground. Nooo, they are long gone to that great lost area where the other sock and TV remotes go. So we're left with balancing wire deer on thin legs in 30 mile per hour winds. The other problem was that Buck's front two legs do not light, leading my oldest Aly to comment that he now looks like a kangaroo. Of course that gets my mind racing on how I could write the next Rudolf the Red Nose reindeer song for a Kangaroo (Ken the Kristmas Kangaroo was my fist choice). But alas, those ever-industrious Aussies already appear to have one. I am a sucker for real bad Christmas songs:
So six light sets later, with the reds out on one of the chaser sets, half the lights out on two of our 'net' light sets, we're done. 1/2 hour later, we look out to find Jane laying on the ground with her head off her body and the neck still slowly writhing to the animatronic beat. We get fixed and bring Gracie out, the REAL reason we set all this up. She is fascinated with the lights on the house next door and we wanted her to have something to ooo and aahhh over at our house. She ran from house to house babbling with delight, but the chasers sans the red were her favorite. Twinkle Lights, Twinkle Lights! We are finally officially in the Christmas spirit!


Friday, December 05, 2008

Blabbermouth

I just HAVE to share my Livie's new found voice with everyone. She's been in speech therapy for a couple of years now. They have worked on her oral muscles, motor planning and making sounds. The therapist has always said that she would get the relevant sounds out of her; a K-K for cookie and cup; a P-P for 'up' and quite a few others. But Lin and I were never really privy to her vocalizations; it was probably just situational that she was expected to make sounds in speech, so she did. We would only rarely hear 'pop outs' or relevant speech when she really wasn't thinking about it. We'd get the mama and dada and an occasional coo-key; but it was never consistent.

Yesterday, Linda drags me into the bathroom with her and Liv and tells me that Livie has something to show me. "Go ahead, say it". She come out with, what I can tell, is a very deliberately oral motor planned "UUUU---PPP". Of course the room explodes with our praise and she does it one more time "UUUPP". It was a request to get up from the seat! YESSSSS...

Later that evening, I took her into my bedroom and Aly was sitting working on the computer. "Hi Livie, how ya doing, Aly's in here too". "AAAALLLEE" comes out of her mouth as clear as day. Shock and a congratulatory eruption comes out from us and she says it once again "AAAALEE". We got ourselves a trend here!

Now today, she's leaving speech and waves goodbye and comes out with a "BU-BYYE" at the same time. She was so proud of herself, she jumped up and down with everyone giving her the WO-wo-WO-Wo!

Sorry all you looking for why it happened; no changes in diet, no new protocols, supplements changes in therapies; just good old fashioned hard work from a little girl who is such a trooper working the cognitive, muscular and breathing into vocal replies. Congrats Liv!

Just to cover all her other methods of communication, she really has dropped off using PECS, her teacher at school is into signing and she's picked up on a half dozen new signs. I am even pushing a new sign into the mix: 'gum' . She is TOTALLY into gum and those are the things that will motivate; she will now pinch her cheek several times to request a piece.

No matter what form it is, I can't wait until I can have a two way conversation with her. I know she has so much to tell me and sometimes I can tell that she's frustrated that she can't get it out...but she will...

Thursday, November 27, 2008

The Deed is Done...

Just a quick update on the demise of Space Couch. Death occurred at 6:49 PM on Nov 27, 2008. What was once a 3 piece sectional left the house as a nine piece in sections. We sawed apart the one section; separated the sleeper into three pieces; severed wiring. Both my brother in law and I risked cardiac arrest getting the new couch into the house. Other artifacts of note found in the couch: One nursing breast pad, circa 2005; One crushed Diego plastic figurine (daymn, I should have saved that one!), one Santa hat that had trapped a mouse on a lollipop (no, the mouse was not real); 2 Nuks circa 2006; 4 more spoons; and 2 bags of junk.

Livie now has a corner in which she can get the enclosed space she craves. They are not the 'out of this world' couches with bells and whistles functions we had, but they're a heck of a lot prettier and your butt don't hurt when you sit on 'em! Thanks Mary, thanks Mom n Dad...

Sunday, November 23, 2008

Space Couch- 1999-2008




It arrived in mid 1999, in response to Linda's plea for somewhere comfortable to sleep when the baby arrived. A three piece sectional, dark blue. We christened it "Space Couch", because of all the bells and whistles it came with. You felt like you were in the cockpit of some great spaceship. Dual Recliners, a flip down console with massage, heat and a hookup for a telephone. The other side, a pull out bed and a flip down place for drinks. A Couch Potato's dream for sure. Linda was planning on spending the first few weeks of Jason's life on the couch so she didn't have to get up in the middle of the night with the worry of opening up he C-section.



That was then...one child, one on the way. A few things have happened since then. I can't even remember life back then. One kid...ONE child! What did we DO with all our time? In a 5 year stretch from when we bought that couch, we added four kids. If that didn't change our life radically enough we also added autism to the mix. And the couches have seen it all from the back end.


We weren't thinking durability- four kids later, that is painfully apparent. This was a somewhat decadent purchase from the late 90's where we chose function over solid form. The massage and heat have not been working for years; the recliners no longer recline. What were once proud, soft and firm seats have sunk down, revealing the wooden framework. The other couch has the back separating from the seat from repeated attacks from various attempts at gymnastics. Even the cats get vertigo when climbing on the back of it. It was probably our move from Sussex County to Monmouth that was the beginning of the end for Space Couch. It had just lost its mystique by then, not to mention a few screws, some wiring and structural integrity.



It had gotten so bad that we began looking at curbside couches as 'slightly used' compared to the disasters we we holding onto. The reason was pretty simple: Two years ago the couch was not THAT bad and last year we began the process of potty training. The thought was that after we got through the few months of training, we would scrap them for new couches. Well 13 months later, we have just begun the process with Grace; Livie has taken three times as long as we expected, she is only now really beginning to get a rhythm. The couches have borne some the brunt of this process.



So when my sister offered up couches from her garage, the choice was easy. No 'new' couch to worry about stains; we could get a year or two use out of these and if there were accidents, there would be no real hand wringing. The added bonus was that they were my parents' old couches. Not that there's any reason to think that there might be some kind of positive karma in them; Mary, my sister, says there's a 'mom mark' on it where my mother's head was for the last years of her life. At this point, we can use all the good karma we can get, and if 'Saint Therese' can watch over and help us get the little things done in life, that would be a great addition.


Now comes the task of digging through the crevices to find all the lost treasures from the past nine years. We've already found 3 spoons, two letter 'R's, a Game Boy game, a lost TV remote and lots and lots of JUNK! Space Couch is HEAVY and we did not have the manpower (nor the confidence in our carpentry skills in case they broke) to move them that often. It's like an archaeological dig; they always want to find the 'garbage dump' because that's where all the good stuff is. Every toy, every cup and utensil, every (yuck) pretzel that fell through the cracks is not part of the 'decommissioning' process of looking at each part of this sectional for hidden potential treasures. Coins, BAH! We're looking for GOLD; that missing puzzle piece, that 1 inch by 1 inch 40$ Game Boy game; the other remote that's been missing for 9 months; the unknown lost treasure that one of the girls stole and stashed in a crevice for a rainy day.



In any event, au revior dear Space Couch, may you be found in some future archaeological dig as an example of something that could not stand the weight of so large a family! Thanks for your service, don't let the door hit your cushions on the way out!



PS, yes that is NOT my couch but the first picture of a joke about whether you choose dogs or kids for you life...this is the picture of the dog, HERE'S the kid picture. Neither are thankfully representative of the true nature of my house, but there are occasions when it came close!

Sunday, November 16, 2008

Troy Mom Taking Training Her Son's Class Into Her Own Hands

I don't usually highlight and comment on autism happenings in the news, but that last interesting piece about PA and this next one just seemed to be noteworthy as great things that should be emulated. This one relates to a mother of a seven year old autistic boy. She has taken it upon herself to go into her child's class to talk about her son's autism and try and germinate understanding about the condition. One of my favorite examples she uses was this:

During her time with Ryan's class, Kessler brought one student to the front and asked the other students to make soft buzzing noises while she tickled the back of his neck. Then she asked him to try and answer a math question. The boy blinked a few times and stared back at the class, unable to respond. "It was hard to concentrate, right? That's what Ryan feels every day in the classroom," Kessler said. "These things don't bother most people very much. But some people with autism feel their senses very, very strongly."

I would think/hope that we could get school systems around the country to get with this type of program and have, not just an autistic presentation, but any class that has a special needs kid have a 'training session'. Ignorance, in my mind, breeds suspicion, misinformation, and eventually hatred and abuse. If you give kids the knowledge to understand differences, then they are far more likely to defend and to discourage bullies from abusing.

I'd love to see a major organization develop a lesson plan for a 1/2 hour presentation given by either a parent or the teacher themselves. When Grace gets mainstreamed, my wife and I are going to be there letting the kids know what autism is REALLY about, and not leave it to the imaginations of the students. ASA, Autism Speaks, you listening? Maybe I'll just go local and talk to POAC

Thursday, November 13, 2008

PA Leads the Way Yet Again...

Our neighbors to the west are beginning to put NJ to shame as far as offering autism services. First, it was the insurance legislation HB1150, that forced PA insurance provider to cover up to $36,000 in therapy services for autistics (you listenin', Corzine?). Now, they have done something for the over 21 autistics by setting aside $20 million for an autism waiver program that will offer everything from assistive technology to job placement assistance to counselling and crisis services.

Not being part of the group of folks that have to deal with adult autism services, I can't adequately judge whether the programs are better, far better or similar to other states' programs; it's just good to see an entire department in PA dedicated to autism services for adults and appear bent on providing sorely needed, targeted work specifically at a group that is most often overlooked. We just need to get that 200 person limit at least doubled, but good job, Governor Rendell! You may make me believe Republicans actually DO care! (and have a talk with that Corzine character across the Delaware!)

More info on Program

Thursday, November 06, 2008

Karaoke Anniversary




My wife and I just celebrated our 20th anniversary. Well, celebrated is not EXACTLY the word, it was a school night there was much to do, so the closest to a celebration was a cherry cheesecake my mom-in-law made. But, because of a little ingenuity and a little bit of nerve, I made it a special one.




You must understand, when it comes to birthdays and anniversaries, I have been the king of buffoons. I would forget altogether, remember last minute and try to slip out for a card, or make some flimsy excuse why I was late or forgot or whatever. Unfortunately, I can count on more than one hand the number of times I've done this; what can I say, I have a mind like a siv.




This year, since it was the big two-oh, I figured, I better do something original at the very least. For years, we had planned (more like fantasized) that we would all go on a cruise for our 20th. By then, we rationed, Livie would be 6 and old enough to go on a cruise (this was BA...Before Autism). Over the next 6 years, our world has turned upside-down, sideways and inside out. No cruise for YOU!




Having always been a Beatles fan, I personally always wanted to rewrite Sgt Peppers Lonely Hearts Club Band, with the "It was 20 years ago today" line as my basis for the anniversary song. I had never really sat down and done it though, until last week. Last night, I found my copy of SPLHCB and popped it into the DVD player and gathered the whole family into the living room. When Linda heard the opening strains of the song and realized what was going on, she used Livie as a shield to hide her face, she HATES to be singled out, even in the family. As I sang my heart out through the song, Jason wasn't exactly kind, not really getting what was going on, and was throwing mock vegetables at my performance. Livie got all wound up by my rendition, and it took her an extra half hour to get to bed.


I got through the song, pretty well I might add, and I could tell that I had FINALLY exceeded Linda's expectations for an anniversary gift. Think of it, no money spent; just a little bit of embarrassment and I WOW-ed her! I have to think of MORE songs to parody, any #25 songs out there?


OK, here's the parody, first person who comments AWWWWW though is gonna join Lucy in the sky with a bump on their head!


Sung to the tune of Sgt Pepper’s Lonely Hearts Club Band

It was 20 years ago today.
I took your pretty hand to say
That I wanted you to be my wife
And I wanted you to share my life

So let’s reiterate to you
The fact that after all these years

I still love you after 20 years…

Well, I still love you after 20 years
I’ll probably go for 40 more
I still love you after 20 years
I really even love you more

I still really love you
I still really love you
I still love you after 20 years

It’s wonderful to be us
It’s still even a thrill
We’re such a perfect match that
I just can’t believe I have you
I just have to pinch myself

Well I really want our love to grow
And there’s one thing that I need to know
I’m standing here on bended knee
In hopes you’re still in love with me.
And if you want to handle what’s in store
Will you love me for even 20 more?

Will you still love me when I’m 64?

SIX-TY FOUR?

Tuesday, November 04, 2008

Now THAT'S a Mandate!

Congratulations to President Elect Obama. God Bless America and best of choices in your administration...

Friday, October 31, 2008

Our 15 Minutes



Have you heard of us yet? We're all over the media? We make appearances, we're going to be recorded for radio, we're just plain county-wide!
OK, we're about as famous as the kid who lost his shorts during gym class, but we HAVE made some minor ripples in our Monmouth County pond. We had an issue with the girl's school, where rumor was the town that owns school building was going to kick us out and make way for a preschool classroom or two (we have 9 classrooms in the building). Well, someone alerted the media the day of the town board of ed meeting and here I am picking up Liv for a therapy session. I get suckered into a News 12 interview and I get my 10 seconds on the evening news; no news organization can resist an 'autism getting the shaft' story. Besides, they got the cutest shots of Livie in the car with her Koosh Ball!

Me and Lin say our piece at the board of ed meeting, a terrifying 30 seconds apiece talking in front of the SUPREME EDUCATORS OF OUR LAND...or at least 10 people seated behind cafeteria tables dressed up like conference tables; turns out they are just trying to appease an audit request and they are just trying to get a 'written' contract from the autistic school district. No immediate foul play for seen, but the future may be ominous...bah, who cares, the girls will graduate out of that school before then!

The REAL 13:50 of fame came on Tuesday. Several months ago, we got a call from a stranger, saying she was from the Holmdel School system. They were holding an autism awareness night in their town and someone at our school dropped Linda's name as 'THE' mom with the knowledge, the scoop, the low down, the goods on all things autism. What they didn't realize that what she DIDN'T have was nerve: she is terrified of pubic speaking! She listened to the message; re-listened; called me; had ME listen to the message, ruminated that she could not POSSIBLY get in front of an audience.

"I could be humiliated in front on THOUSANDS!"
"But, honey, the auditorium only seats 500."
"YEA, but what if it's FILLED??"
"Oh, comeON, the auditorium won't even be half filled"
"But, but that's more than 200 PEOPLE!"
"Don't worry, it won't be that bad", I said

Me being the shy, introvert with the dry and the desert delivery (YEA right, maybe if the desert's in VEGAS!), just blurted out:
"Hey, I'll go on stage with you, you'll be fine!"

That bolstered her into calling back and agreeing to the presentation. We would be one of about 6 different presenters and they wanted us to talk for about 15 minutes. Linda thought that 15 minutes was nothing, we could easily fill up 15 minutes of time with what she had bulleted out. I made the mistake of reminding her that, in speaking terms, I found that 15 minutes could be a very long time. I had the corporate mentality of having sharp-eyed VP's picking apart your data and asking pointed questions. In either event, I made her more nervous. I was now going from 'we're going to speak' to 'YOU are going to speak and I'll just sit back and add little comments'. I'm good at BS'n, but she's the real brains here with advocacy and therapies etc, so now, I'M getting a little nervous.

The passing weeks were spent writing a 30 second biography for the pamphlet; an outline of what we were going to be talking about; and finally a detailed bullet of ideas of talking points from early intervention to therapy to advocacy. All the while the unveiled threat that "Bill, you know, I'm going to just stand up there and NOT SAY A WORD. You are doing ALL the talking!" Even through all this, I could tell she was into it; if for nothing else than to make sure we did not make idiots of ourselves.

Well the Tuesday finally arrived, and Linda was unusually calm, but the weather was momentous. Rain in the morning and spots of SNOW (We DO NOT get snow normally in NJ in October) in the afternoon. "I'm sorry, but we're SNOWED in, Mrs Holmdel educator" was Linda's dream that day that didn't even come close to coming true. We talked about what we had written down on the sheets, but all the while the 'I'm not going to talk' theme continued.

Turnout was a little light, due to the weather; there was only 75-100 people in the room. We were 4th on the agenda, after a doctor and a few therapists. All had polished Powerpoint presentations and I feel we are doomed since we are 'winging it' with no graphics. But as the presentations wore on, I sensed they were losing the audience. We get announced and I begin my spiel. There's only one microphone and I crack a couple of jokes on how Linda's happier that way since she won't be forced to talk unless she actually steals the mic from me.

I start into our family and our history on how we started with the autism community. And all of a sudden, the mic's being ripped from my hand and Linda goes on a tear with the subject. I have to wrench the microphone back out of her hand to complete my thoughts and guide us to the next subject. Several minutes later, I falter for a second and WHAM, she's back to talking, now with a confidence and candor I knew I was going to get out of her. We passed the mic back and forth for I don't know how long, at LEAST 15 minutes in my mind, and the whole forum wound up running a little late, so It might have been 20 minutes. We finish and get rousing applause.

Afterwards, during question and answer, people are bringing up points we made that I barely remember saying, it was truly a blur. We were told that we picked up the tenor of the forum, people were indeed getting a little bored with the technical jargon and needed a boast of real life.

Best of all, we are welcome the next time they have a conference and even better best, Linda is willing able and actually EXCITED about the prospect. I'm glad I insisted and I think she is to.

And finally, our little Gracie was picked in the school to say the Pledge of Allegiance for a radio show they are doing about the school. I don't know all the details yet, I just know that we have the makings of yet ANOTHER star in the family; at least we're not getting famous for losing our shorts!

Friday, October 24, 2008

Don't Cure Autism Now

It seems as if Frank Klein's essay "Don't Cure Autism Now" is missing from many links because of an issue with the home personal page that most set their links to. If Frank or anyone else has objections to me posting it here, please let me know, otherwise, here it is in it's entirety, I think:

"Cure Autism Now." "Defeat Autism Now." Those groups, and their
significant following of parents of autistic kids, are no friends of mine. They might assume that everyone shares their idea that autism is a horrible thing, and that it is obvious to all that autism must be eliminated. They would be wrong if they thought that. Like many fellow autistics, I do not see autism as a horrible thing. That is, though, not to say that I have nothing in common with the cure-autism crowd. Like them, I would like to see the suffering that can accompany autism to cease. I would like for all of the communication difficulties, the lack of self-care skills, the inability to live independently to cease to exist. That agenda is in common with that of the aforementioned groups. So why do I see them as the enemy?

Well, the answer is not hard to see. It's right there in the names of their groups, if you look. If they truly accepted us, as individuals that are equally valid, they would not be trying to cure us, or to defeat us. Intentional or not, that is how I interpret their efforts, and I am not alone in that line of thought. Being autistic is intrinsic; it is a part of who someone is, and it could not be removed (even if a cure existed)without irreparably damaging the person that once was. To cure me is to destroy me, and to replace me with someone else... someone more normal, someone that the more narrow-minded subset of the normal people can better tolerate.To cure autism is to eradicate people like me from the planet... to completely eliminate my kind. I see that as genocide. I do not see eliminating my kind as the "final solution" to the problems that can come along with autism.

The talk of autism as if it were a disease is in itself problematic; diseases are bad, after all, and as long as it is seen as such, the need for a cure will always be on people's minds. If "blackness" (as in being of the black, or negroid, race) was seen as a disease, there may be talk of a cure for that as well. People could point to the fact that black people, by and large, are less prosperous, less educated, and lead less pleasant lives than "normal" people (which refers to whatever group is large enough to declare their ways as being the correct ones). The same things could be said about autistics suffering because of who they are could be said about people that suffer as a result of their race. Of course, the difficulties faced by severely autistic individuals are far more severe than any problems based on race, but the point is that these difficulties, not autism itself, should be seen as "the enemy."

Think of the furor (or should I say f├╝hrer) that would exist if there was an effort to "Defeat Blackness Now!" Even if it were motivated by a humanitarian desire to end the negative aspects of being black, do you think that the black people would support that agenda? Of course not; they'd be up in arms, and rightly so. The folly in eradicating an entire group of people to eliminate the suffering that some of them endure (and the burden they impose on the majority group, which would rather not deal with them)is obvious using this example. I argue that it is no different with autistics.

Many normal people fail to delineate between the things that are at the core of autism and the things that are associated with autism, but are not in itself autism. The line is obvious to most autistics to whom I have spoken; really, it is obvious if you want to see it. The most unpleasant traits seen in autistics are generally not the core autistic symptoms themselves.


These associated symptoms will be present in some autistics, but not all of them, and are not a factor in diagnosis. Some of these things are mental retardation, severe sensory issues, gastrointestinal symptoms,
over excitability, self-destructive behavior, et cetera. Some people see these things, see the suffering they cause for both the autistic and his caregiver(s), and conclude that the autism is a bad thing.

It is true that these bad things are a part of the broader autistic syndrome, but they are not core features of autism itself. It is these things that I would like to see the curative efforts be mobilized against. Not all autistics have any one of these problems; rather than try to eradicate autistics from the planet, why not eradicate the bad things about it? That makes the most sense to me. Blacks have a higher incidence of several diseases, the most famous being sickle-cell anemia. Rather than wipe out the whole race to end the suffering from such things, wouldn't it be better to try to fix the specific problems instead?

The problem is that many normal people cannot see past their own desire for conformity and their pack mentality to see that autistics, weird as we may seem to them, are an equally valid kind of person as they are, and not in need of a cure, or of fixing. They see the bad things about autism, see the suffering they cause, and make no distinction between that and the "weirdness" autism causes. They make no distinction between the things that cause disability, and the things that cause difference. It's all problematic for them; it all needs to be cured. That is short-sighted,and ultimately would prove destructive for the entire species, normal or otherwise. It is not hard to see that many of the great thinkers in society have had enough autistic symptoms to seriously consider whether autism is linked to genius (I have made the case previously, in my article entitled Autism, Genius, and Greatness). The link between "eccentricity" and genius is well-established; this eccentricity," as it stands, happens to look a lot like what we now call Asperger's Syndrome (AS). A disproportionate number of the great thinkers, scientists, inventors, and innovators in history had enough autistic symptoms, as documented in the historical record, to assert that they probably were on the spectrum. As it turns out, many of the traits of AS just happen to be the things that are needed by society's innovators and thinkers. Curing autism would make people like them more normal, but is that really what we want to do? To make a genius normal is to take away his gift; to take away the gift that geniuses give to society.

While the literature comments that about 80% of autistics are low-functioning (mentally retarded), that really is not true. It has been estimated that there are about four people with AS for every autistic proper. It is no longer much of a question as to whether autism is related to AS; it is now well-accepted that they are on a spectrum, and are indeed the same condition in varying degrees of expression. It has also been observed that people with AS are generally above average, often well above average, in intelligence. As such, autism is not a condition that usually causes retardation; as few as 16% of people on the spectrum are retarded. The 80% that is the AS group has a disproportionately large number of people with genius-level IQs. Since AS and autism are the same entity, only varying in degree of severity, eliminating autism would have the effect of eliminating AS as well.

"Curing" or eradicating autism to eliminate the problems of 16-20% of the autistic spectrum population, at the risk of losing a large percentage of society's thinkers, would be horribly counterproductive. Given that the lower-functioning people have the same genetics as those with AS (as can be seen in identical-twin studies where autism and AS co-occur in dentical siblings), it seems much more reasonable to find out why some end up low-functioning and why some end up as geniuses, and see if there might not be a way to prevent the retardation.

No one wants to see people suffer because of sensory issues, frustration from inability to communicate, or to be unable to live without constant assistance, as is the case with many autistic people throughout their lifetime. That does not, however, mean that the whole group, necessarily including the more able autistics like myself, must be eliminated. The formula is so obvious to me-- eliminate the awful things associated with autism, and celebrate and appreciate the wonderful contribution that the difference between normal people and autistics brings to society. Don't wage war against autism-- if you win... I mean, if you really defeat autism...all of society loses. Let's celebrate autism, and help autistic people to be the best they can. We'll appreciate it, and society will be the benefactor.

Sunday, October 19, 2008

Family

We had the planets align yet again and packed the entire family in the minivan and had a great time. Even though we could not find the back seat's middle seatbelt fo 15 minutes, we went to a family gathering at my brother John's house. We've had strokes of bad luck over the past few years (more like we had a stroke of good luck THIS time) in that SOMEONE has always been sick or not available or we were tired or dead or something or the other. In any event, we finally got our butts out of the house, and had a very positive impact on the gathering. It was really good to see we were missed (we hadn't ALL been to a family gathering since the diagnosis almost 4 years ago). It was REAL good to see my dad up from Texas, even though we did not have more than 10 minutes to talk. Linda and I were busy chasing Liv and Gracie around. Kinda the 'childproofing' syndrome from our younger child days, except this was 'autism' proofing. Gotta watch out for falling lamps being kicked over; HD flatscreens being stimmed and banged on; and very small and delicate objects being knocked over.

We realize how MUCH we let slide in our house at home. How we watch out for gum in our house, but if it gets on the rug or the table, it's not a big deal. Yea, Liv didn't have a piece of gum there. We fed her rather than letting her feed herself. It was a big thing to have her even there; we weren't going to press it by showing off her eating skills. My three other kids were just PERFECT. They didn't start fighting 'till we were in the driveway and the key was out of the ignition.

Thank you everyone for being so good, so caring, so understanding, so perfect. We have so many things going on it is very nice to remember we have a whole BATTALION on our side. Sometimes I forget...thanks...

Sunday, October 05, 2008

The Battle for Sanity

As previously communicated, we have been plagued with frequent night wakings, this morning was day 27 of the siege. It really has felt like a war. Thursday night was the girl's Tet offensive...or maybe it was just plain offensive.

It started for Grace as it normally does this past few weeks. She wakes at midnight, finds herself lonely, and decides to seek out mommy for companionship. She goes into the living room and finds a warm body to seek comfort with. She curls up by her head and goes back to sleep. From the other side of the head, a potentially explosive situation is brewing, because it is not my wife on the couch, but my mother in law. She barely registers that a human body has taken residence by her head, being a cat person, these things are common at night. But, the sleeping arrangement becomes increasingly uncomfortable as the restless Grace uses her as a lumpy mattress. Finally, grandma can take it no more. "Gracie, you need to sleep in the bed on the floor." The first two 'Mommie'-s were that of a frightened child, who had the mommie morph into some evil bloodsucking monster. The next two mommies were of desperation looking for that lost mommie. It took several minutes to calm her back down, but she finally realized grandma was not in the bloodsucking mood.

Meanwhile, back at the girl's room, Livie has also woken up. Hers is a more complicated insomnia as she will wake up a little more than every other day, and her times are more varied. Linda's chance at actually sleeping in her own bed shattered, she moves into Liv's bed. I...am in for it...

The first and fatal mistake is I did not properly crush up the 1/2 Clonidine. Either it did not get in her mouth, or she spit it out when she realized there was an extra crispy piece in her regular teaspoon of applesauce. Without benefit of hindsight yet, I tick the minutes before the Clonidine should take effect. 3:45 should be the magic minute. 3:55, stiiiilll going, OK maybe she's a little more feisty tonight. 4:15, something is wrong here, I'm in trouble. I put back on the nighttime pull-up she's pulled off as she will have the habit of taking it off when she's bored. I am getting kicked when I turn my back on her and she demands gentle scratches, massages and conversations if I face her. 5:54 am- the final attack. I thought I had heard her take off her diaper again a few minutes before. I had rolled over facing my back to her. Suddenly, the biological weaponry that had been banned through treaty streams onto my back. That word that rhymes with duck echoes through the house as I carry her back into her room.

My wife said she was so close to uncontrolled laughter, but saw the expression I wore and thought better of it. "SHE PISSED ALL OVER ME" I said through gritted teeth, I deposit Liv in Grace's smaller bed and go back to my own to find a dry spot. After stripping the sheets and mattress pad, I still find a semi wet mattress cover (plastic coated, of course for just such an emergency). I insert a towel and collapse on the unmade bed. I don't even drift because I knew it would happen before it even happened... I knew it was coming... "WCBS radio, it's 6:08, time for traffic and weather togeth.." snooze? Yea, right...

I did surprisingly well for 4.5 hours of sleep Friday. On a somewhat positive note, Linda DID get more sleep than she had in a week. Grandma, who did 10 years as a nurse on the night shift seemed unaffected.

We have mounted an offensive of our own this weekend. Thankfully, Friday Liv slept and we hit the Clonidine correctly last night just right so I got some decent sleep, allowing Linda to work on Grace's habitual need for companionship. She keeps sending her back into bed, eventually lying next to her until she drifts off. We knew what Grace's insomnia was and how to deal with it, and had just been too exhausted to implement.

We're still trying to figure out Liv's issues. It could be some complex yeast imbalance, just plain old stomach discomfort, even a desire to pee in the middle of the night that she can't quite express. But we need to divide and conquer before we can assault her issues. An army cannot fight without sleep...

Friday, September 26, 2008

I'm Glad Their Priorities are Straight...

I debated posting this, since it was so short, and since I should really be focusing on the current financial crisis and the bailout proposal. But since Sen. McCain can debate tonight, I guess I can post a quick post:

Linda got a call from the school today, went something like this:

"Yes, Linda, this is the nurse from Grace's school. We wanted to let you know that Grace ate a piece of crayon today. But please, rest assured that they ARE Gluten/Casein free. Another child had eaten a whole crayon and her mother checked up on it and found out they are indeed GF/CF."

I'm just glad to see that we first have them properly trained on GF/CF protocol and that they are working hard to make sure that all foreign objects my children eat will meet their dietary requirements. I'll also be happy if they minimize stimming on bagel knives and redirecting fixations on small house fires...

Wednesday, September 24, 2008

More Sleep Deprivation


I scanned back through my old blogs to see how long it's been since I complained about not getting enough sleep. It's been long enough, time to vent again:


The past month, basically since before school started, we've been having the tag team twins of early morning madness keeping us on our toes (and stubbing them in the dark!). It seems like the past 3 weeks it has been every...single...night. Sometimes, it's Liv; other times it's Grace. Sometimes, one kicks off the other and we get both in the ring at the same time (I have to check the WWE rulebook, I'm sure two in the ring at the same time is not allowed).


All this leads to some pretty unorthodox sleeping arrangements. Grace is a restless sleeper and it's not uncommon for her foot to wind up in my face or for her to fall asleep sprawled out over the both of us. Our remedy is to send her out to the living room on a kid's futon with Linda on the couch. On more than one occasion I wake Linda up in the morning, looking for Grace, only to realize that she's curled up at her head like a cat or scrunched behind her wedged like a puppy in a brood.


Liv is another animal. We do have and use Clonidine to calm her down if she wakes up, but we like to leave a gap of at least 4 hours before she has to wake up. So before 3:30, we can use it, after that; one of us has to deal with her antics because she will often go 2-3 hours before konking out. I'm usually the one taking the hit on that, Linda escapes to the couch. It's interesting trying to sleep while holding on to a toe or holding her in place. Interestingly enough, she has the most 'pop outs' during the night and she will frequently go through her list of words she knows and I will respond in kind. "Da da, juuu" "No, I'm sorry honey no juice, go back to sleep".


The only other saving grace is that Liv will not open the door and come out. Grace though, will open the door and will request the door be open whenever she's conscious. So, it'll be Grace that will show up at our door in the middle of the night like a ghost. Liv will just take advantage of the opportunity to get out as well. Her preference though, is to go in the living room and turn on the lights and TV (THAT'S a wild wake-up call!).


A week or two ago, I heard Liv on the monitor, went to open the door, only to find both up like Pop Tarts (uh ooh better explain that reference to a link, in case Pop Tarts are not a global thingy). I stood there for a minute trying to get my logistical brain to function. "Two girls up, where should Livie go? Is it past 3:30? Are there any potty accidents to consider?". I can't remember much about that night, I only know that Linda and I had two different bedmates in the morning...


It really sets a bad tone in the morning, being down 2-3 hours, especially when Linda has her bursts of energy after they go to bed and winds up staying up late catching up. This morning, it was Grace who was up at 5; getting her to rise at 7:15 is like raising the dead, since she can sleep on anything in any position. I took away her blankets...no movement. I stood her up; she leans back on the couch and sleeps half standing. Finally the thing that aroused her was "Grace, do you want pink game?" Grace is absolutely addicted to Nintendo DS and we try to limit her; but these are the occasions you hold it back for, and we did get her up and ready for the school bus.


Sometimes there are reasons, like Grace having an ear infection 3 weeks ago; sometimes we just scratch our heads as to why and what is causing them to wake up. We certainly hope that it's just a restless spirit and not a pain and discomfort reason. What makes it difficult is always the lack of communication to tell us when there is something really wrong; when it's just a nightmare, or a bathroom urge or a thirst or whatever. Jason will wake up probably more than once a month, but we usually get the scoop (although sometimes he's a walking zombie talking nonsense).


Friday, September 19, 2008

Humina Swajusay Huh?

I'd like to take comic license on a recent conversation with our insurance company. The conversation isn't entirely true, but the gist is here:

We had found out in the summer about a program where another insurance company was offering grants to help pay for therapy expenses not covered by our insurance company. We applied for a grant to cover Liv's occupational therapies, since they don't consider covering 'chronic' conditions. The deadline for completion was September 30th and we submitted around the 4th of July. We received notification in the beginning of September that grant needed amongst other things, a denial letter for Liv's apraxia, since that is how we worded the application, we only had a denial for autism.

NEVER throw down the gauntlet in front of my wife. Less than 30 days, getting the required paperwork. Coordination and insurance document acquisition is her specialty. Got the info from the Ped Neurologist, from the therapist; got a package of all the info needed to send to the insurance company and sent out the fax; probably took less than a week. Now comes the fun part; the call from the completely baffled clerk who wound up with this on her desk:


Ins Clerk: Hello, yes I'm calling about the fax we received yesterday regarding your daughter, Olivia
Linda: Yes
Ins Clerk: I wanted to let you know that we have to send this in for review, but occupational therapies are not usually covered for chronic conditions.
Linda:Yes, I know that I was looking for you to deny it.
Ins Clerk: I'm sorry, you want us to deny this? (Clearly, 'thank you sir, may I have another' is not covered in the "How to screw the Client" manual)
Linda: Yes, I am 99% sure you will deny this, we need a denial letter in order to apply for a grant for non-covered insurance expenses. We need it quickly as we have a Sept 30 deadline to apply.
Ins Clerk: We I uh....the review process has to go to another department and it usually takes 10-15 business days.
Linda: That's if you are evaluating it on whether it is going to be covered, I'm asking that you DENY it. (I mean, this is something that they do with deadly efficiency normally; it's page one of the playbook: DENY)
Ins Clerk: I'll see if I can get the adjuster to look at it, you DO want it denied, right?
Linda (somewhat exasperated, but remaining cool): Listen, you can either PAY it or deny it. Since I'm almost certain you are going to deny it, I only ask that you do it quickly (Lady, I'm painting a target on my chest and yelling 'KILL ME NOW', just do it!)
Ins Clerk: Well, uh, alright, I'll give you a call back

She gets the call back yesterday to say that indeed they were denying it (sorry, I don't have the strength to try and reproduce the conversation between the clerk and the adjuster). We're awaiting a fax copy of the letter. Of course, it's delayed, you couldn't expect them to have reprisocity ( I have to leave that bad spelling of reciprocity in, it made me laugh!) and make OUR lives easier after giving THEM such a slow pitch!

My wife is currently reviewing back issue of Soldier of Fortune Magazine, in case these yo yo's screw this up. It's bad enough that they don't give me THEIR money, but if they deny us the ability to get money from others WATCH OUT!

Thursday, September 11, 2008

It was a day like any/no other...


It was a starkly beautiful day, blue on blue skies probably average for the time of year. It was primary day I remember. I was in the throws of the latest project at work, whatever it must have been. I remember the internet was unusually slow as I tried to find out about what my wife had called me about. Pictures were just starting to become available on the internet, in a format that didn't take 2 hours to load at least. I remember hearing more and realizing that something was terribly wrong.

I remember the person who told me the South Tower had collapsed; I remember telling people about the Pentagon. I remember them calling us into the largest meeting room we had and saying we should all go home, be safe...and pray.

When I got home, I remember finding a dead kitten in the road in front of our house and being so numb to it as I moved it into the bushes. I remember telling my kids what had happened and saying that what happened today could never be underestimated. I worried about my family, they country and the world.

I remember all the firefighters, so many firefighters, that were lost. I remember the candle I set out on a rock outside every night for days on end in the hopes that it might help find someone alive in the rubble. I remember finding out about Father Mychal Judge from the picture of him being carried out of the rubble; the priest only trying to minister to the injured and giving last rights to the firefighters he worked with. I saw hundreds upon hundreds of picture that disturbed me to the bone; of the attack, of the people, of the masses of humanity dazed, bewildered and obviously changed.

I remember the quiet at night from the lack of planes in the sky over the following weeks. I remember the static I heard instead of radio station which had lost their signal that was on the radio tower. I remember the lack of Channel 13 on TV for the same reason and the total lack of commercials for weeks. I remember the eerie quiet at night from the lack of airplane activity, and the times I did hear the sounds of F16's. I remember averting my eyes from the skyline when I drove to spots where I could see a gap in the way I expected to see it.

I guess this is not much of a tribute to those who lost their lives that day, God knows I've never looked at firefighters the same way again. I just wanted to put down what will probably be ingrained in my mind for the rest of my life, for the rest of all our lives. God Bless America and never forget...

Monday, September 08, 2008

It's the Most Wonderful Time of the Year

Getting them back to school that is. I really think that song should be reallocated to back to school. Let's start with some random thoughts:



  1. Book Sox- anyone want to lynch the person who's marketing these? Between Book Sox and scientific calculators, these two items took up probably the majority of the near 200 dollars we spent at Staples for back to school supplies (OUCH!).
  2. Nervous/depressed kids- I don't know about any of you adults out there, but in retrospect, I LIKE to learn new things; but my oldest daughter referred to school as a subversive plot to imprison the masses of children this morning.
  3. Back to school night- otherwise known in our household as "How are we going to clone ourselves THIS year? I do like to meet the new teachers but, as far as the school systems in our town, we're old pros, not like these 'amateurs' with one or two kids that want to see what the cafeteria looks like. We should have some kind of easy pass where we can go to the front of the line and get out to the next one...
  4. Paperwork- The amount of information they are asking from us nowadays borders on encroachment of privacy. If you think one of two kids in school is hard, try 5! Linda was up until one in the morning answering questions on the 'getting to know you' page like 'what's your child's favorite TV show.' Grace's teacher wants BIOGRAPHY! I just think we need in boxes and outboxes; I know, my office mentality showing.
Well good news is that the girls are in a school with good programs, Jason's in LOVE with his teacher (shhh, don't say we told!); Aly's has all her friends in the same lunch; and Dillan yet again has an opportunity to become Mr Popularity (he only knows a couple of kids from previous years, but this kid gets along with ANYONE, he'd make friends with the Grinch after 3 weeks in class).

Linda has 5 glorious hours of freedom between when the last one leaves and the first one gets back. Of course the law of linear sicknesses will have at least one kid home roughly half the school year, but we won't reminder her of that eventuality. Heck, we might even get caught up before the fist wave starts. Hope your school start is going as well as ours, and those without kids can stop laughing now, yea, nothing to do and all day to do it...hammock comfy?

Sunday, August 31, 2008

N'orleans

Obviously we pray that all people will stay out of harms way as Gustav looks to be heading towards LA. But, if it's possible to pray for a city, New Orleans needs all the help it can get. I fear this may be a death nell for the city. I'm not so sure that Katrina and Gustav are just devastating coincidences, and we might be seeing the beginning of the end of this major Gulf Coast city.

Tuesday, August 26, 2008

Bring on the New School Year

We're on vacation this week. So far we've been on vacation from two things you would not expect. We were on vacation from electrical power on Sunday for 7 hours; we've also been on vacation from normal sleep patterns as BOTH girls have been waking up at night. Lucky for us, we can adjust OUR sleep patterns and get our full 6 or 7 or 8 hours of sleep.

This week is also the week of testing the new schedule. We have them both in camp from 9 to 1. It's incredible what you can get done in that amount of time. Linda has the potential to get at LEAST a 9-2 out of the fall schedule as both Liv and Grace will be in the same school. I may have mentioned that this is the longest break Linda has had since Jason was...wait since Dillan was... since Aly was...heck EVER! This is going to be a monster year for determining whether we can get enough hours out of the day having both in full time classrooms. A whole buncha new things are coming in 08-09 but that is the key. 5 hours of freedom to get done what needs to be done. 5 hours to see whether the 'base' of their education/therapies will be good or bad. School is where all drives from; if we get good teachers and aids and therapists, we KNOW we have good private therapists, so things will go well, but we need that good base to launch from.

Yes 2008/2009 will decide much in what we do and how we do it. The other three are in a steady state; same schools, basic same routine. But Grace and Liv drive the mood and tenor in the house; where they succeed or fail the rest of our mood/household follows. If may sound extreme, but it IS 40% of our children and a larger % of our efforts. May your year go half as well as I expect our year to go....

Wednesday, August 20, 2008

TOOK A LEAP...

Some may think that a night out with the family is no big deal. But when you are seven and two are autistic, a night out with all seven of us has NEVER occurred. All that changed last night thanks to an organization called POAC and a restaurant in Aberdeen NJ called The Court Jester. Forget that we barely FIT all of us in the minivan, forget that any number of things could have set the girls off. I walked into this restaurant expecting to explain "Well YOU invites US" and having at least two of the family waiting for the rest in the van at the end of the night.

Well the evening went off without a hitch. Hardly an outburst from either child; no major fighting between the older three. People coming around every now and again willing to take a child off our hands to entertain them while we eat. It was great to have volunteers from both POAC and New Horizons in Autism there willing to help out. A gluten free menu was available, although we had backup food which proved to also be a lifesaver since both rejected the fair.

What was really great was the sense of community I got out of the experience. We are somewhat isolated in who we interact with; we really only see parents and children in our own age group at the current school. It was nice to see varying ages of autistics, from toddlers to adults all enjoying themselves. It went so well we thought why we hadn't done this in a 'real' restaurant. But I think having that ability to let our hair down, have an occasional 'whoop' come out of Liv, that a sense of worry might have affected our mood and made it more probable that a meltdown would occur. It's a shame that people in the 'real' world can't get over their need for quiet, perfect enjoyment of their evening to accommodate our differences.

Speaking of, one of Grace's aids was there and almost didn't recognize her. You see, last week we had a bit of an incident where a pair of scissors went missing and Grace decided it was time for a makeover. Thank goodness no major accident occurred, but the styling job she did on her hair left much to be desired. She has 1 inch long bangs now and a good sized gash of hair missing from one side. It took a professional to get her to the point where she did not look like a train wreck, but no one in their right mind would have chosen her current 'bob', to put it euphemistically.

So, we may now have a once a month date at this restaurant since they are planning to do this monthly. Hope to see you there...

Monday, August 18, 2008

DAD'S TAXI SERVICE

WOW, almost two weeks without a post! But between my physical therapies during the week and just stuff backing up over the girls being done with summer school, times are tough for free time.

This weekend was sort of a blur, but refreshing because I actually got out of the house a couple of times. The first was yet another excursion into the paranormal. No really, ghost hunting has become a hobby. It's cheap (put out maybe 100$ for equipment and 20$ for a lifetime membership to the NJ Ghosthunters Society; it's conveinient...the cemetary investigations start right around when the girls go to bed; and it lets me utilize my internet investigation techniques to find out about various histories of the area around Monmouth County. Won't get into it all here, maybe I'll start a new blog, rather than clutter my autism blog.

But the real fun started on Sunday morning. Liv has been housebound for several weekends, I had been worried about my ability to lift her over these last few weeks so we hadn't gotten out. Grace was stricken with an ear infection that we discovered on Saturday (and that *I* was the one to push to have her go to the doctors for once). I'm gearing up for the afternoon around 1:00. Aly had been pushing to hang out with her friend, she gets hold of her and decide to go to the movies. 2:10 showing, I have to shower, but I can make it. 1:30 getting set to go, packing Liv to take her along. Dillan gets a call from his friend...playdate at the friends house. OK, I can drop him off first, tell them you'll be over in 10 minutes. Get a little delayed, call Dillan's friend shift that to 1/2 hour. Pick up Aly's friend, drop off at the movies; drop off Dillan. I am now free to roam about the county for the next hour and a half.

Things didn't go as planned for me and Liv. Local bay-front, Laurence Harbor...packed to the gills, both parking lots; swing back around to Keyport, flea market, that lot's packed too. I remember a dirt road back around Union Beach from my travels and decide to take a chance. A quarter mile hike on a road lined with reeds yielded a neat little outcropping on the bay during low tide. We got to wade through gentle flowing water and tide pools full of little fishes, seaweed and hermit crabs. She has a lot of her sensory issues in her feet so the varying sand softness, the shells and water were just to her liking. Fisherman wading 100 yards out into the shallows, a Mexican family clam hunting in the reeds, a photographer taking shots of the scenery and dozens of sailboats dotting the bay and it was a nice little distraction we had to leave all too soon.

Back into the car to pick up the girls at the movies; drop off at her friend's house. Hit up a new take out place for a menu, check out a new supemarket in the area. Back to get Dillan, head home for the dinner break, then back out for my final pickup of Aly. The 1 to 9 shift is finally over.

Certainly not the day I had planned, but all in all a great tour of my local Bayshore area...and I wore Livie out with her being a co-pilot...

Tuesday, August 05, 2008

DOORS

Reading through my last post, I realize that there is a back story about something that is critical in the lives of, not only parents of autistics, but of parents in general...and that includes those of you who are parents to the four-legged variety (all living breathing beings for that matter). Doors play a critical role in all our lives; I'm not sure if they play a more critical role in our household...you be 'da judge.



We have 11...no, make that 12 living breathing entities in our house, including the one fish. Each has their own unique needs for containment and/or access to the outside world. Fish, no prob, self contained, we only have to watch out for unwanted intrusions from the 4 felines and Liv who loves to stim on the water. A little duct tape and we're set. Next, felines...so, you have to keep them inside...check, don't leave doors open. They need access to the garage to do their bidness, kitty door...check. Our newest kitten has a little specific incontinence trouble (she likes to pee on bathroom floors), right now she is relegated to our room with her own littler box. I think this is where it begins to get complicated.



Bedroom door shut to keep the cat in, that works for the most part, except for the girls. Livie cannot open doors, so we're safe there. Grace, however knows no boundaries, can and will open all doors. I also made the unfortunate mistake of unlocking the bedroom door in front of her. Now she is always on the lookout for coins to unlock the bedroom door. Livie DOES however like to shut doors. They're like a tagteam, Grace is the security expert and Liv is the mastermind. Unlock the door to look for mommie, let the cat out, Liv goes in and shuts the door after. Now, cat is out, Liv is in our room potentially doing damage to our computer or whatever. Luckily, Grace is locked out and complaining; there's our alarm. Get cat in, get Liv out; all is hermetically right with our world.



Now comes the full effect of the human/door/animal interactions of the house. The gate and the doors to the outside world pose the greatest challenges. Grace, the locksmith, has already proven herself many times with her Houdini like (lemme get with the times, Criss Angel-like) escapes. Her two latest accomplishments are using stepstools to get to the front door chain and discovering that there is a back door slider that is sometimes open. That on top of her ability to open the child proof gate and unlock doors and she is virtually unstoppable. Thank Gawd she hasn't discovered she fits through the cat door in the garage! So, in and out of house must include a lockup or a designated lockee for after we leave. Likewise, when someone comes in, the doorbell sounds and someone has to let 'em in. We USED to have the older three go through the back, but Grace is now a threat. Chain, lock or gate undone...BIG trouble for the non-do-er.

At night, we also have special challenges. Since Tim Allen resides in our house, the girls' door does not quite bolt (yea I'll get to moving that latchy thingy next weekend), so unless you close it JUUUUUST right, anyone can leave, and they do. Nothing like having Liv come in our room at 2 am and turn on and off and on and off the light. Or maybe she'll go in the living room and turn on the TV. How about she goes into the bathroom to start the great flood. Or Grace come quietly in the shadows of the room like a gremlin and squeeze in and begin reciting a Big Comfy Couch episode. WE HAVE A JAILBREAK...

I guess, looking at it from the 20,000 foot level, it ain't all that bad, it just seems at times all I do is worry about who's where and what are they doing behind closed doors...or outside of them.

Monday, July 28, 2008

Friggin' Kite Eating Trees


I suppose everyone can relate to Charlie Brown. From the kite eating tree, to the losing-est baseball team, to Lucy pulling the football at just the last minute, we all get to feel that 'nothing's going right' feeling. Well, you are all just posers because, as the line in the X-mas special goes, "of all the Charlie Browns in the world, [I'm] the Charlie Browniest".
My wife asks me why I'm so cranky all the time. "Not right now, per se," she says "but just in general." I gave her one of those blank stares; of course I am cranky, it's one of those things I need to work on: temper and quick frustration threshold are two of my worst traits. " I don't get to have ANY fun, and even when I try, it turns into a disaster!" Then I proceeded into a tirade that I did not perceive to be all THAT funny, but she receives with convulsive hilarity:
"You wanna know why I'm so cranky? You wanna know?" I said in my Kramden-esque voice. I had purchased online last week what I thought was the perfect mid-summer game-booster, something called a Bax Stop, an inflatable back stop for the games the boys have in the cul-de-sac, a game that's combination, stick-ball, wiffle-ball and baseball. They use a big fat plastic bat and a tennis ball; but they always have to use a player as catcher; this inflatable contraption would have put an extra player on the field, and settled balls and strikes to boot. I would be hailed as the grand summer saver, making the summer classic...classic-er. The Bax Stop was not only an incredible bargain at less than half the price it normally sells for, it came with a bonus electric pump making it the deal of the year... as well as being the hit of our little world.
I would suspect you have an idea of where this is going. I inflated it fine, but I spent the better part of 1/2 an hour trying to figure out how to tie the net to the backstop, only to discover that I had missed a critical piece of string that 'tied' the whole thing together. 10 minutes later, the net intact, I make the grand presentation to the gang. Appreciative ooos and aaaahs in front of our driveway...just as I had planned. "Let's bring it over to OUR driveway and get a game started." one of the neighbor's kids said. My good feeling work done for the day, I retire to the garage to find a plumber's 'snake'; Liv has thrown an unidentified object into our toilet, and no amount of plunging has sped up the flow. I need the snake to see if I can push whatever it is through. Ultra-dad AND Bob Villa in one day...could it be possible?
10 minutes pass; no snake in sight. Then Dilan calls from the font door, "Daaaad? The Bax Stop's got a hole innit! I think Jason stepped on it." Across the street I go, with the insider info and accuse Jason without benefit of jury. He bursts into tears, a sure sign of a guilty verdict. Meanwhile, my once virile Bax Stop has become viagra-less; the boys had tried some duct tape, but the patient was not responding. Back to the backyard for the Bax Stop; I retrieve the only two bandages that come with the unit. I open the duct tape that was already applied...it's not looking good. A seam rip a centimeter long;. One patch and the medical students surrounding me proclaim "It's still leaking!" I put the second one on..."It's leaking on the OTHER side of the patch now!" Much as my medical knowledge hates it, in desperation I call for the duct tape (actually packing tape). Four strips later I declare the patient dead, with objections from the medical peanut gallery. Monday morning surgeons ensue detailing what we should have done, one asks "You gonna call the company? It's defective!" An hour ago, I was victorious in my Superdaddom; now I just get rid of the 'dad' part and that's how I felt.
Back to today, I keep throwing one liners at Linda, to continue her gasping for air in laughter. I realize that despite my nominal failure, I CAN make some good out of my tragedy. I renew my resolve; I CAN make some good this weekend (I WILL kick that football this time). I resume my search for the snake in the garage. I find lots of other fun things (two year old Easter candy, a pennywhistle etc) but no snake. I DO however find a reasonable facsimile: something I bought 4 years ago, a vent brush, for cleaning dryer vents. Right size good length...I'll give it a try. Unfortunately, the cord does not have a wire core...it's hollow plastic. And in my bathroom, I have a brush eating toilet bowl. Hello Rotor Rooter? Bob Villa has eluded me again, replaced with Tim Allen...as usual.
UPDATE...$147.00 later, the mystery object is discovered. A Dora truck was lodged in the bowl deposited by Liv during one of her disceet excursions into the bathroom. As our local Rotor Rooter rep said "Too small not to go down; too big to get through." At least I know that my efforts were in vain and we would have needed to call a plumber whether or not there was a brush stuck in the bowl. All the kids were certain that the Rotor Rooter truck in the front meant that Jason and Grant were visiting from TAPS.

Friday, July 25, 2008

One Step Up, Two Steps Back

I guess it's not that bad, it's more three steps up and one back or something like that. Oh wait, let ME take a step back. Grace has recently made some significant improvements in her behavior regarding patience and her ability to 'hold it together' when things don't exactly go her way. But last night my wife Linda sat me down and was very upset about the fact that Grace has been very echoic lately and not answering questions, but instead just repeating words back to us.

A month ago, she had, for the first time, SHOWN my wife where she had gotten hurt and had begun answering questions in more than one word answers and had not needed to be prompted. For those with kids not on the spectrum, you probably watched milestones like this just whiz by, like markers on a highway; for us though, these are milestones are more vertical in nature, like hitting the 10,000 ft marker on the side of a mountain. So, the fact that she had slid back to on these skills was quite disheartening.

It turns out that the teachers and aids, who have been doing a wonderful job at working her behavioral issues, had underestimated her abilities from a language perspective. Instead of pushing her for answers to questions, they had been prompting her so she had become 'prompt dependent'. For those on the planet Earth, that means that when the held up a ball, instead of saying "What color is this ball?" and waited for and even pushed for "The ball is blue", They would say 'Gracie, what color is the ball? Blue. What color is the Ball?" and then grace would answer one word: "Blue". This method is great when you are trying to get words out and building up the child's question and response, but if they're already past that, it brings them back to a simpler time.

Big todoo anyway, notes flying back and forth, they are going to quickly 'fade the prompt' and get her on track. Part of the issue with this school is that Grace is a little too high-functioning from a language and play area; her real issues are with socialization and transitions. Sometimes if you are not explicit with the teachers, they kinda revert to 'simpler time' and somewhat expect the child to be lower functioning than they are. We are still happy with the school but we are just frustrated that we are halfway through the 6 week session, and she'll be hard-pressed to get her 'non-prompted' abilities back by the end of the session. It's all about not regressing in the summer sessions, after all.

It just goes to show you how easy it is to not be coordinated between the schools, your therapists and your child's needs and abilities. It also shows how nutzo some of us parents get with the details. I'm not sure whether some 'normal' parents go nutzo on the details or maybe within the autism parents' circles some let it slide and some are nutzo. I guess I'm just glad that we caught it and we can do something about it...