Liv's Mainstream Issues

Livie's had some issues over the past few weeks, and we finally have gotten to the root cause, so to speak. Last Monday, the Speech Therapist said she noticed her one tooth on the top left was not doing good. Linda had somewhat written off the comment as just her noticing Liv's 'shadow' on that one tooth, an old 'war wound' from her days when reflux ravaged her enamel and caused several cavities. But Linda looked on Wednesday and saw what the therapist was talking about: a bubble above the tooth. She immediately called Liv's dentist and got an appointment and a prescription for antibiotics. The first liquid prescription made caster oil taste like Coca-cola, Livie absolutely refused it, which is unusual for her, she normally will tolerate almost anything we give her, so we knew it was bad even before we tasted it. Linda, had the prescription redone for a chewable, much better results and we held the infection at bay until today's Tuesday appointment.

The verdict came in from the dentist...abscess, the baby molar would have to come out. She had a choice of having Liv go under general anesthesia or just do it today in the office with Novocaine. I am proud to say, for both my girls, Linda decided to go without the general (both for her and Livie!) and do it today; Livie bore the brunt of the procedure with incredible resilience. She went through the Novocaine with nary a flinch, and really only got really upset when the crack sound of the tooth coming out was heard (yea...I flinched and cringed too when Linda described it that way...thought I'd share the feeling).

So that was the 'emergency' procedure, but we also had Livie's bi-annual visit to the developmental pediatrician yesterday. Let's start this monologue by saying that, as with most everything we hear from mainstream doctors related to autism, I do not hold this doctor's opinions about autism and what to do in such high regard. Don't get me wrong, for many many people dealing with autism, especially those new to the diagnosis, a dev-ped is the perfect place to be to get your bearings and even to get guidance if you are not, shall we say, up on what to do and how to do it with regards to autism. For people like us, however, dev-peds are a necessary evil...like lawyers. You need them as gatekeepers and figureheads to sign the generic papers stating that this therapy is needed or a 'real doctor' to say Livie is indeed on the spectrum.

Linda had called me at work yesterday, nearly in tears, about what this doctor had said in the appointment. Some things, we agreed with. Livie has indeed gained a lot of weight over the past 6 months. But it was her reasoning an logic around why she gained and how we should deal with it. "You know, these reward based therapies will often cause them to gain weight." 'Scuse me? OUR schools 'rewards', will normally consist of praise; if food, it's 1/4 of a GF/CF M&M. The real problem is at home and that we love to feed her and that frequently, her mandings center around food. "Well, if she asks for more food, just say no...you've had enough". OOOkkkayy, she's communicating, she's asking for more, your solution is to shut off rewarding the communication with not even a grape? We'll figure out the diet thing on our own, lady...oh sorry, Dr. lady.

Next comes the grilling on our latest venture regarding the trans-Cranial Direct Current Stimulation in conjunction with language therapy. "You're going to Long Island twice a week? I haven't heard about this, I don't know about it's efficacy. What is this doing to your other kids, you guys being away?" OOOO, hitting below the belt, talking about being away from the other kids. It's a decent point, but this is only a one year stint and we will eventually work this into a once a weekend thing and incorporate the other session into her 'normal' therapy schedule.

Then she gets into whether or not it was time for a change to a new speech therapist. Now I'm getting her agenda; she does not like the idea of trying to get Livie to speak. She also is not happy with our current school. But Livie had already shut her up with using 3 independent signs during the visit for things not in view (this courtesy of her current teacher's ideas on signing). Nevertheless, she namedrops two other programs in the area which are good, but we had written off already as not great due to their rigidity using discreet trial ABA or not conducive to Livie's needs.

Then, she get on Livie's attention span. She would not 'play' with the Doc's toys that she had provided and was beginning to annoy the doc by putting them in her mouth instead. Linda says "She does not play appropriately with toys, she never has". DUH! Check the DSMIV, doc-tor... it's, like, one of the potential CRITEREA for autism! Then she comments "Well, for the attention, I would have prescribed Risperdal, but with one of the side effects being weigh gain, I'd have to say no!" NOW WAITAMINUTE....RISPERDAL? Hey Doc? Did you actually READ what the uses for Risperdal regarding autism ARE? Or do you just play word association and are programmed to "think autism, think Risperdal"? I know there are very good uses for Risperdal when it comes to controlling an out-of-control situation, but attention span AIN'T one of them:

RISPERDAL is approved for the treatment of irritability associated with autistic disorder in children and adolescents (ages 5-16 years), including symptoms of aggression, self-injury, tantrums, and quickly changing moods. It is the first and only prescription medication approved by the FDA for this purpose.

Linda and I talked through the points that she made and, as always, we have some work to do. I may sound arrogant, but I get the impression that this dev-ped does not know a whole lot about real-world autism. Oh, she might have a half dozen to dozen autistic children in her practice, but I think that she might be relying a little too much on the standard autism playbook. It saddens me to think that this scene may be played out all across the country, with people who may hold doctors and their degrees on such a high pedestal as to not question whether they REALLY know all there is to know about treatments, therapies and behaviors. It also saddens me to think we will probably stick with her, because as Woody Allen put it in the end of Annie Hall...we need the eggs. I'd prefer to have a dev-ped who would work with us and collaborate (someone well versed in autism would be nice too), but we'll have to settle for one who just lays eggs...

OBAMA

I couldn't let the inauguration pass without a quick note of thoughts. It's incredible the amount of good spirits that was in the air this morning and this afternoon, it has truly been historic. With all that goes along with him being the first African American president an all that is at stake in the country and indeed the world as far as the economy goes, we are truly at a crossroads.

I think there is a lot of expectation for change in the situations of groups of people in former and current positions of minority. Indeed, the African American community, I feel, has finally reached that 'promised land' where character is and color is not where you are judged. But beyond that obvious observation, I think others in minority positions feel a wind coming on. From a perceptive of being somewhat of a 'minority group' ourselves being in the autism community, I just think there is a level of cautious optimism that SOMETHING new is on the horizon. Whether there is benefit in this new administration or will we get trampled by this 'new government service' mindset, from a logical perspective I can't be sure. There will be an obvious need for belt tightening in Washington and I'm not sure where we will all wind up. But the feeling is that every thing's gonna be alright. If you don't mind the corny analogy, we are at the crossroads and we just took the left!

I had also planned to make an observation, but Barack (uhh sorry THE PRESIDENT) beat me to it in his speech:

This is the meaning of our liberty and our creed - why men and women and children of every race and every faith can join in celebration across this magnificent mall, and why a man whose father less than sixty years ago might not have been served at a local restaurant can now stand before you to take a most sacred oath.

God Bless America, watch over our nation and our President...

Gracie the Cat

We have been somewhat lax in our disciplinary duties of late with Gracie. When left to her own devices, it seems that her natural state or that mystical animal companion that she turns into is a cat. Although, I'm sure there's a few hyperactive puppies trapped in there too.

Her sleep has been very good lately, the bad news is that we have given up trying to keep her in her bed all night. She will now only fall asleep in our bed and we have to carry her into her own bed. No matter what, by morning she has wandered back in and settled in, most times, without so much as a bounce on the bed or cry for attention. The feline connection here is the way she sleeps. Her favorite position is stretched across both pillows with her head bumping on of ours and the feet causing the other to wonder who's trying to pick our nose and why are their fingers so stubby? The unwritten rule is that if the other finds her hogging the pillow, like so many of the cats we've had, that we would reposition her between us in the traditional position. We don't use the traditional cat remedy to this pillow hogging because Grace doesn't usually land on her feet.

Her other feline attribute is her amazing ability to jump from object to object and object to floor, as well as her climbing ability. Upon witnessing these feats, I swear my mom-in-law is going faint dead, my wife screams bloody murder; I silently calculate the distance and pray she clears it, or that we have given her enough calcium if she doesn't. She frequently will climb up the back of our couch stark naked and stand in front of the picture window facing the cul-de-sac. It's a peep show for the neighbors; oh well, at least the boys across the street will be properly trained in female anatomy when the time comes.
She will climb bookshelves, dressers, entertainment centers and anything else that could have a potential prize at the zenith. She will jump from the couch to the floor; from the BACK of the couch to the floor, from the therapy ball to the couch (thank goodness her claws haven't come in yet) and every deadly combination of the three. The last straw last week is when she climbed her three foot higher dresser, cleared the two foot wide chasm and two foot high bedpost, to land knee/butt first onto her toddler bed. I witnessed the first one mid jump, and made sure that I was sufficiently cross in trying not to get her to do it again. I'm working on Liv in the bathroom and I hear a CRAACK! My fear was that Gracie Knievel did not clear the headboard; and ran into find her saying in some long lost Dora script "Oh no, the bed is broken!". She had clear the headboard but the siderail could not handle the strain. It had cracked at the screws. OK, the revamping of the bedding arrangements were not our emotional, therapeutic or financial agenda for 1Q 2009; so this was not happy happenstance. Not to mention that this bed was a 'loaner' (sorry, guys, I'll give you a call in a couple of days). Gracie's pearl of wisdom came yet again out of the annals of Dora the Explorer, "STICKY TAPE! Stickky Taaaape!" All of you understand that feeling you get when a child applies pre-school logic to what you perceive as seious situations, but before my blood reached 212 degrees Fahrenheit, I noticed that the break was pretty clean and it only affected one screw. Immediately, the male logic took over and wanted to apply the solution to 99% of the household repair projects...DUCT TAPE. But silver on wood would not have looked that attractive, and the solution WAS INDEED the preschool solution: clear, wide, packing STICKY TAPE. I mean, the bed will clearly not handle the stress of most all acrobatic maneuvers now. But at least I think we've bought ourselves a quarter and we'll last until spring.
We have had more focus on Livie, and we've let Gracie's progress slip somewhat. She is very active and dexterous, I hope our more sedentary lifestyle doesn't slow her down, we have her jumping from the pyramid of cheerleaders in the future. But I already have too many cats in this house, I don't need another...

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...

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

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!

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!

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.

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:

Six White Boomers

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!

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...

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...

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!

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

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

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?

Now THAT'S a Mandate!

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

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!

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 führer) 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.

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...

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...