Wednesday, January 28, 2009

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...

Tuesday, January 27, 2009

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 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'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:

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...

Tuesday, January 20, 2009


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...

Saturday, January 03, 2009

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...