Post Mortem

I have to finish up the deer story, because I had so much fun with it this week. First and foremost, my yard is now doeless, Jane was taken away on Thursday afternoon. The cost was less than the 300 dollars originally quoted. But when I got home Thursday night, my mom-in-law confronted me saying "I would have done it for 50! I could have made a couple of bucks..." The ditch digging careers were short-lived for me and Dillan; no way I was spending a rare weekend off in hard labor; besides, the rains in our area have once again turned our backyard into Lake Monmouth. I would have had to weigh her down with boulders to get her to the bottom.

My best moment, however, was April 1 at work. My whole area was well versed in the now legendary ex-deer and my predicament. Late in the afternoon, I called home and got no answer, so I held on the the receiver and decided to have some fun.

"Hey hon, did the guy come yet to pick up the deer? What do you mean your mom went back there? No, no no your kidding me? With a KNIFE? Wait, wait when did the cops get there...and she was bloody? OK, OK, OK calm down! I'm sure the neighbor across the street can watch the kids while you go down to the station. I know I know, but Aly can watch the girls. OK, you want me to come home? What's that? APRIL FOOL?"

Suddenly, the office broke out in quiet snickers, as they had heard the whole story. I retorted and held up the receiver and said "The jokes on YOU all, there's no one on the line!" I had been looking all day to get them and I finally did!

My performance was nominated, and I'm sure it will win, the Robert Newhart Academy of Telephone One-sided Conversations Award... affectionately know as the 'Phoney'. I am out a tidy sum getting rid of that animal, but I sure did have some fun with it!

Autism Awareness Day

I feel remiss of late because I have not been heavily focused on the area of talking on the internet and fighting for rights and legislation and general visibility for those on the spectrum and those who care for them. Today, of course, is Autism Awareness Day and I think many families on the spectrum are in the same spot that we are in: we have far to much to do to spread awareness. I did wear one of my Autism Awareness golf shirts to work today; I still got berated for being late for a meeting because I choose to help my wife get my two autistic girls on the bus in the morning. There are far too many people out there who have that 'pick yourself up by your bootstraps' attitude and refuse to believe that THEIR priorities are THE priorities and that accommodations are for the weak. I however, have grown to a new understanding and have new definitions for the words 'accomodation' and 'weak'.

I've had a very weird and tough week and much of what I have had to deal with has had nothing to do with autism; but I find that, in many cases, it indirectly does. Late because of the extra accommodations my daughters need to make sure they get on the bus; I'm tired because Livie got up in the middle of the night (it's been much better of late, but still); my wife's still ferrying the girls to after school therapies. We always have that specter of whether we are doing too much, not enough and what is best for each girl.

I guess that is what I'd like everyone to be aware of: that it is still a daily struggle. But then again, after 4 years on this road I have grown so much in my capacity to appreciate the small things in life. My love for my girls and pride for what they have, can and will accomplish knows no bounds. My pride and love for everyone in our family and how they have grown to meet this challenge as well, astounds.

I just hope that every family dealing with autism can grow in their capacities the way ours has over these past 4 years. Yes we do need 'accomodations'; but we are far from weak. God bless us all and those looking from the outside into the spectrum, keep us in your thoughts today, this month and throughout the year...

Oh Deer

Sometimes I feel like my life is just some ongoing black comedy. Or maybe it's just that I'm always trying to find humor in everything and some stuff just happens to fall into the macabre, morbid or taboo. In any event, let me get into this by first forwarning those of you with weak constitutions or with a special feelings in your heart for all those fuzzy creatures on the planet to please drop off at this point.

This morning I woke up and looked out my back window, as usual, and saw something rather unusual. What's that in the back part of the yard? No, it can't be...yup...a dead deer of all things. My kids were in the yard last evening, so this doe must have died last night, probably from a car strike. Now my area is not exactly Deer Central like some of my relatives where the deer hang around in herds on their properties, smoke cigarettes and talk trash at the passing cars. I have one set of 8 deer that I see once a year maybe; a mom with a decided limp and her 7 daughters (now probably 2 years old). To show my only hint of decency and sympathy, I hope this deer was one of the 'babies' and not the mom.

Very quickly, the full implications of having a carcass in my backyard became apparent. I made a quick call to my local police station and confirmed that I was responsible for the body: in my yard, my problem. If it were in the road...different story.
"Well can we just drag it out to the curb?" Linda suggested
"Oh yea, and we'll just say it was struck and killed on the cul-de-sac." I said...I'm not draggin' and I'm not lyin'
"Let's drag it over into the neighbor's yard!" Linda snickered. Tempting...but no.
"I'll just call someone to take it away" I said, "What's it gonna cost? 50, 75 bucks [pun intended]?"
Linda, in a rare display of quick wit said "Just as long as we do SOMETHING with Jane Doe".

My mother in law however, was more hard nosed about the situation. "WHAT?!? The town won't take it away?" I said "We'll just call someone, they'll take it away for 50 dollars." She seemed shocked at the price "50 DOLLARS! I don't want to pay $50 to get rid of it!" DAYMN, I thought she thought the price was low. "We can just get rid of it ourselves." she continued, "Cut it up, bag it, you have a chainsaw, don't you? Heck, they do it on SVU all the time. I mean, this is just like being a butcher. We'll just cut it up and get rid of it!"

Luckily, it was time for me to go to work, so I didn't have any more time to discuss. On the long drive, I had thought about what the 'manly men' in my family would do. My dad or my brother-in-law would just have gutted it, hung it up, then taken it to their butcher friend and gotten 20 pounds of meat out of it. But, like, I don't have a sharp knife and let's just say that bambi-burgers wouldn't go over well in my house (let's just call them bambergers for all those and let the pun go completely overboard). The other alternative, my M-I-L in the backyard with chainsaw and a hockey mask, wasn't sitting well either.

I called my wife at lunchtime and found that the situation was getting a little more critical. My wife and my mom-in-law had to take Jason for a scheduled doctor's visit, and they had agreed NOT to talk about it. My MIL had commented to Linda "Don't worry, don't ask me about it, I'll take care of everything." Oh, shit. I have to act quickly. I checked the internet for 'animal removal' and after a somewhat over-detailed website, I called seemingly the only person in the area who does this kind of thing for a quote. "For a deer, I'd have to get the owner to call you back to get you an exact figure, it's not stuck in a fence or something?" she said. After I made one of those droll looks at the camera I said "No, it's in an open space in the backyard, it could be picked up and taken away rather easily." "Well," she continued, "it depends, but the price would be around 350-500 dollars." "Okaaay, thanks, I'll call you back."

Now I'm thinking about being out there with my MIL, with the hacksaw and a white butcher's coat. I'm NOT paying $500 to remove an animal who happened to die in my backyard. Okay, time to weigh the options:

Mom's legs-sticking-out-of-the-garbage-can idea...I just can't do it and I can't have her do it either.

Drag it out to the road behind my house and run like hell at midnight: not pleasant but a viable option at this point.

Last, dig a big hole in the backyard with lime and be done with it: Lotta work but it seems to be the only honest and cheap (and less than morbid) alternative.

So I get home tonight, eat some dinner, get into my sweats and announce the digging will commence in 5 minutes. Of course the older three are all gung ho to get out there. Of course Jason, has to go out the front door and announce to the entire neighborhood (there were 8 pre-teen boys in the cul-de-sac at the time), in his best impression of Vern from Stand By Me said "Hey guys, wanna go see a dead body?" (BTW, did you know that Vern kid was Jerry O'Connell?). It took 10 minutes before the gawking stopped and we could get down to work.

Night falling, only one shovel and one pitchfork (SNAP) there goes the pitchfork. We got about one foot down and called it a night. Me huffing and puffing; Dillan barely breaking a sweat; Jason providing color commentary; Alyson banned 15 minute before that over fighting over the shovel. Just the kind of thing I look forward to when I come home after a long day at work.

Hopefully, this will be the end of the story. We'll spend the next two or three (or four or five) nights getting 3 or 4 feet down and be done with it. I'm not really laughing as much as I was this morning, but dark comedy is supposed to make you think as much as laugh...

Sometimes, Just Take it at Face Value

I freely admit I'm a cynic. I will look for the 'angle' as to why someone might be doing something that, on the surface, might seem altruistic. So when Gracie had a note in her backpack saying that she was the 'most improved student' and that if we brought her to a specific Lakewood Blue Claws game she would receive an award on the field before the game, my cynicalarm went off. Then, when Livie came home with the same note, I got in trouble with the whole household because of my smirk and attitude about these 'awards'. No way, EVERY kid must have gotten one of these notes, this is a sales gimmick for the team to drum up sales.

I made Linda write notes to their teachers to ask them if this was true. Turns out, they ARE both the most improved students in their respective classes. Gracie's behavior has improved markedly over the past few months and Livie's signing and receptive language has exploded over the same time period. So I happily eat my own words. Yea Yea...there are only 6 kids in each of their classes and yea, the Blue Claws are going to sell 5 tickets to the rest of us. But i can't wait to be out on the field with the two of them while the echo of the announcer mispronouncing my last name reverberates through the stadium. I guess they won't let me take the mic and say that I am truly the 'luckiest man on the face of the earth' to have two girls who are doing so well.

New Therapist (subtitle: The Big Box)

We finally received our mattress for Grace last week, and I found enough time this weekend to set up the girls' room the way we'd like it (reintroducing Grace to sleeping in her own room comes later). Not enough time to pack away the toddler bed and the crib mattress, however. We were also left with a huge, go cart sized box in our living room, the bane of parents' lives because these boxes tend to have 9 of them. This one has been no exception. It was a cat rest, a roller coaster car, and a race car briefly, until Aly realized the amount of effort it would take to push it down the hall with Grace inside. She spent 1/2 hour prepping it with duct tape and it spent 2 minutes in actual operation.

I'll not get into the details of the battle for this box, suffice it to say that both Jason and Aly had vied for the cardboard... Jason had lost. When Aly had given up on the race car project and was about to begin the dismantling, when I intervened and passed the prize back over to Jason. Jason took off with it and began creating something called a Pat Pat Rocket. Gracie had just received this thing related to the Disney show Little Einsteins, so I am new to this whole rocket business. But here's Jason jumping in, getting Grace involved with the designs on the inside.

Linda told me Jason has been doing wonderfully with Grace, interacting and getting her involved with imaginary play. From the play category, Jason's pretty much the polar opposite of a 'concrete thinker', preferring to make up things as he goes along, mixing up medias of TV shows, Legos, video games and anything else that gets lodged in his head. He's has a very warped imagination (he's my son after all)! All that imagination pours out and is a perfect foil for Gracie's scripting and repetitive language. They spent hours in the spaceship, pressing the imaginary buttons and going on imaginary 'missions' that Gracie is following along with and enjoying. The ship is still residing in the middle of our living room, although I am not so averse to it's existence...at least for now.

So, we can add Therapist to Jason's long list of potential career paths: Screenwriter, actor, writer, dad and anything else that requires an overactive imagination. Thanks, Jay

Sleep Deprivation in 3D

Once again, I am back on my 'sleepbox', ranting about that little thing that most take for granted and that many of us caregivers to those on the spectrum long to achieve...that 8 or 7, heck sometimes 6 hours is a blessing. Three words: Sleep Is Essential. It's even more important than all those other life sustaining activities. Lack of exercise kills you slowly; a bad diet is going to cause long term issues. OK, maybe if you stopped drinking, you'd die faster, but sleep is critical for for for, what's that word again...oh yea, THINKING. We tag teamed Livie this weekend, we alternated the early shift (4:30-7:45) then when Grace got up, the other would sleep. Fine and dandy if you don't need to get anything done. Monday morning came off without a hitch, she got up at a reasonable time. This morning though, I'm up with the fisherman at 4:15. No tears, no screaming...just a little girl looking to get up before the sun did.

The most frustrating part of all this is that we have not found a reason why. Go back to the days when your child was an infant. Imagine that feeling when your baby is getting up at night, and you're not sure what's wrong. Diaper's dry, no fever, not hungry, maybe teeth. maybe something's brewing. Sometimes it's just that they get in the 'groove' of getting up in the middle of the night. But in our case it's now different. First, this 'baby' is 6 years old and capable of great feats of destruction; she doesn't just sit in a crib and rattle the bars. Next, the baby will eventually grow out of this, there is a finite timeline of 2 years old three tops. Yea, you get a thirsty or scared child in you bed once a month, maybe once a week, but we run into spurts of 3 and 4 and 5,6 days in a row. Last, we worry that there is indeed something going on physically with her that we are missing. She has a notorious high pain tolerance; we've missed abscesses, double ear infections, you name it. So, it all adds up: Fear, frustration, forced insomnia = fried brains.

Then you have the feline Grace, who has taken up permanent residence in our bed. We're waiting on a mattress so that we will revamp their room. We'll have our revenge at that point. One of US will wind up taking residence in HER bed with her until we can get her acclimated to sleeping alone again. Yea yea, in the meantime, we're breaking the cardinal rule: make them sleep in their own bed. But they will bounce off each other if they are in the same room. One will wake the other, and all four of us would get no sleep. Linda and I are honestly getting used to having a foot in our face, or having her trying to literally push us to a corner of the bed so she can stretch vertically on the bed.

So midnight madness, make that, pre-dawn derange-ness still reigns supreme in the house. I'll start feeling the longer day around 5pm, and I'll have another cup of coffee and shake it off. I just hope this isn't the start of a major waking-streak. If so, I may wind up making even less sense than I usually do; I may even need to borrow some of Salvador Dali's face props from the painting above!

DIFFERENT WEEKEND

We had a little break from the norm. I had a little time this weekend away from the standard therapies in Lon Gilsland and found myself in the afternoon, afforded with some time. Time that I could just flippantly decide what to do. Not that there wasn't 1001 things I could and should be doing, but this was a day that I could do something frivolous for a change. First, I decided to take Livie out, because she had not had a weekend off either. Then, I thought, Gracie could also use getting out of the house. But, I freely admit my limitations and I would not attempt an excursion out with the two of them alone. I decided to bring Alyson along to be a second set of hands. Then Jason decided that he wanted to be included (much to the protestations of Aly). Finally, just before leaving, Dillan decided to join us.

OK, all five was not what I had signed up for, but that's the five cards I had drawn. We headed out for parts known on Route 36, a little known place called the Twin Lights of Navesink, the historic lighthouse overlooking Sandy Hook. Aly was looking for someplace indoors (translation: a mall or some place with games and rides), I was looking for a controllable place where all would be sufficiently awestruck to not run away or fight. The lighthouse fit the bill, although, I'm not sure Linda was happy about us climbing the stairs into the tower. We did a 'club sandwich' of sorts on the stairs with the girls; the two boys going first, Gracie next, Aly behind her, then Liv, then I followed up the rear to catch any falling debris. As expected, Grace shot up the spiral staircase rivaling the boys with her speed; Livie was tentative but consistent going up. The view was spectacular, but with my combination of acrophobia and kids-sqeezing-through-the-bars-or-jumping-down-the-stairs-Ofobia, I could not relax.

We did the obligatory 5 minutes at the top, then the real fear began; getting back down. The last set of stairs up to the top are very narrow, not much wider than say a good sized ladder for getting out of a pool. Again, of course, Gracie AKA SuperGracie had no fear nor trepidation going down; all she needed was three children to buttress her in case her head got ahead of her legs. Livie, is another story. As I went down the stairs backwards first and helped her down, I was reminded of the old joke about why Ginger Rogers was a better dancer than Fred Astaire: answer, she did all his moves backwards and in high heels. I didn't count the stairs, was it 60? 80? 1869 (# of Empire state Building steps)? It just seemed like it. I had Gracie's coat in the hand I was guiding Livie with and I was waiting for her to trip over it. I also had three kids saying "Where's dad and Livie?" No pressure.

We got out with no scrapes or screams (save Gracies expected protestations when we were leaving). We could not find our standard camera but we did have Aly's low budget camera, so we may have some record of the fact that I DID fly solo with all five kids not only to the lighthouse, but also a walk on the beach afterwards. There were only some minor skirmishes, half of which were due to my nervousness, so the gang was good to me...and to each other. Linda, although I didn't ask her, probably was unnerved by the eerie silence in the house...

The Price of the Stim

BA- Before Autism if you would have asked me the meanings and concepts behind dozens of phrases, I would have not had a clue. Among them was the idea of stimming. I guess it's not such a foreign idea to many of us on the NT side. The idea that you need to repeat things and do things to calm yourself down, to 'center' yourself, it's not such an alien idea. From spinning something mindlessly on your finger, to needing a cup of coffee and 1/2 hour in front of a TV to wind up or down, it's a pretty universal idea across the entire realm of human existence. Even the ideas of destructive stims: addictions; bad behaviors; I guess you could liken many of the world’s ‘vices’ to a negative ‘stim’.

Which brings me to my girls. Gracie’s stim behaviors I can almost relate as an OCD-type of behavior. Wanting certain thing certain ways; repeating sections of videos over and over and then echoing them back nearly as much. Nothing kills conversation more than hearing a 4 year old giving you the Baby Einstein sales schpiel from the end of the tape with all the same words and inflections. The only time her stims become truly negative is when they need to be repeated to the exclusion of all else and tantrums ensue if they are not ‘honored’. In short, Grace’s ‘stims’, if you can call them that, are not normally negatively impacting her or our life.

Livie, on the other hand, has a number of stims that can easily get out of hand and prove to be harmful to person and/or property. Let’s start with the oral fixations. We have really battled, over the past 4 years, over what’s going into her mouth and trying to find non-dangerous (read non-toxic; non disgusting; hopefully non offensive) alternatives to her chewing ‘stims’. We’ve had wipes replaced by gum; toys replaced by chewie tubes; socks replaced by…by…what was it, wipes? Anyway, the oral need to chew and grind always seems to wane and wax; lately we’ve been in full blown, chew everything in sight, mode. We need to get her back on some minerals we’ve been lacking lately and we think pica has begun to rear its ugly head, even with Gracie.

Now finally we get to the reason for this post, Livie’s all time favorite stim: kicking. This one goes back all the way to the beginning of her regression, pre 2 year old, when she first started kicking in front of the television. We thought it was neat, because when she first started this stim (before we know what a stim was), she would get excited at the start of a Dora tape and lay on the ground and kick her heals to the beat of the song. We laughed for a few weeks until it also was being done in anticipation of, to request additional viewings and eventually as just a need in general.

This kicking stim has gradually morphed into an all purpose communication tool, relaxation technique, sensory seeker, attention seeker and even sometimes, affection seeker. Having Livie come sit next to you and stick her feet in your face is indeed an honor, as you are privileged enough that she sees foot that you massage hers! If she is not liking your position or her lack of being the center of attention, she will give a bang on hopefully an inanimate object. On occasion, a living breathing being will be the object to kick. Most often she is very precise with her blows and they will be as a touch on the shoulder. I look at her feet almost like another set of arms and hands as they are quite exacting and almost gentle (it’s like the trunk of an elephant if you can grasp that concept). Nevertheless, we have had some scary kick moments with both human and feline when Livie becomes less than focused on what her feet are doing.

Ah, yes, feet not in control. Let’s see what Livie has done over the last 2 years or so. She has taken out all three doors on our entertainment center. She has rendered the remote on our living room TV unusable (she must have hit the infrared receiver on the TV itself. She has taken the sliding doors of her bedroom closet off their hinges and exposed the nails on the plasterboard walls next to her bed. She has destroyed the blinds in her room. And last but not least, the pièce de résistance, last week she put a hole in the wall of our bedroom. Linda had only clocked her in the room a couple of minutes; she had pounded on that wall for hours over the past two years. She must have hit it just right.

Like it or not, we have now labeled the kicking stim public enemy #1. It's not that we are stopping it at all costs; we just have stopped 'ignoring' it. She can't go back to our room until we can figure out how to repair the damage. Re-wallpapering our bedroom was not on the agenda.

Flu Season

OK, I may not be very coherent today, because I am part of the 37.5% of the household stricken with the flu. It's been a fairly weird couple of weeks. Two or three weeks ago, we started with a cold in the house. I think I've mentioned before that the CDC uses our household fro advanced early warning and tracking of various minor epidemics. The boys were both down for a day or two, then Gracie was down (I think Livie was in there too intermingled, but I'd have to pull a FOIA to be sure). But last week, the big F.L.U. hit. We thought Aly had been a straggler with the previous cold, but when she didn't get back up properly on Thursday, and Liv began showing signs of the same lethargy on Friday, we knew we had a communicable disease in our midst. Not nearly as bad as the pandemic of '07 mind you, but still chock full of coughs and miserable children.

Lin and I kinda took it as a blessing in disguise. We cancelled Livie's weekend therapies and set out to clean house. We rarely get the chance to tag team the house on a weekend anymore and we relished the chance to do some hardcore cleaning. We got through our bedroom on Saturday; I packed up all my CD's and by Saturday night, I was whipped. But it turned into something more by the time I went to bed. By Sunday, I was in no position to clean (horizontal) and Linda was in no mood (sleep deprived due to a late night with Livie) to make any attempts either.

So, I got a sick day Monday, and I am anticipating (like waiting for black hooded man with the sickle) for Linda to come down with it and split the household down the middle and send the house into panicked survival mode. If there's one thing worse than a house full of sick kids, it's a house full of healthy kids and sick adults!

We had the two girls to the doctor today and she has seen this one and it's the 7 day variety. She knows first hand because her flu vaccinated household has been through it. Aly's got a pass from school until Wednesday. We hope the other three kids might have had a white blood cell boost with the previous cold. As for me, I don't think I have the stamina to be here all week; I need to go to WORK and get some rest!

Snow Daze

We all got stranded at home today, due to a snowstorm hitting NJ. It was not really that bad, but these 'amateurs' in Monmouth closed all the schools. Remember, we came from Sussex County NJ, where they judged closing schools based on number of feet of snow. Under 1 foot: delayed opening; over 1 foot: they'd delay the opening and see how the roads were to see if they'd close them!

I don't know about where you were brought up, but for Linda and I, we had a completely different experience with the 'administration' of snow days compared to the present. Way back in the 20th Century (he said in his shaky old man voice), when we were kids, they'd blow the sirens in the town at a certain time; if you heard the sirens, no school. In my hometown, we had a 'whistle' about two blocks from our house (to get a smile out of my sibs, it wasn't really a whistle, it was more a BAAAAAP), and you were not going to miss that sound. But even if you did, you could listen to the radio for hours to hear YOUR school called out, or you could dial and redial the school number until you got through to hear "School is closed" o the answering machine.

Now flash forward to the MODERN WORLD. A MODERN WORLD of automated phone dialing and messages. Let's call EVERY parent out there and inform them first hand. While that's great for John and Jane Q Public with John Jr in middle school, it's a decidedly different experience for us multi-handicapped (translate: children) families. Top that off with the fact that we're in 4 different schools with the 5 kids, and our house sounds like a radio call in show in the early morning on snow days.

First call comes in at 5:11, it's the 'main mom' from Livie's class, starting the phone chain to call the other parents on the list. 5:14- the first of the automated school calls comes in. While Linda is looking for the list, the second auto-call comes in at 5:16. She begins getting the task of calling the other parents, the fourth call comes in at 5:21 "Yea, I know, can you take me off your list, I'm a dialmom too" Grace's class chain mom-o-mater is informed by Lin. Then the comedy starts. Auto-call #1 from Jason's school fails to make a full connection at 5:25. Aly's auto-school call comes in at 5:27; then a second call from the misfiring automaton at 5:28. Then the final Jason call gets through at 5:31 with full message regalia.

8 inbound calls and 6 outbound calls later, do you THINK we know that schools closed? Thank the MODERN WORLD and it's technology, everyone in the house is awake and informed...

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...