What Do You Say?

Linda was in the local Toys R Us the other day (along with supermarkets, these stores give her 'Frequent Shopper Supreme Express Concierge Service' due to the six figures of extra revenue she brings into the stores each week) and again was on the line, when the cashier began engaging Grace. "Oh how cute, a pretty princess! Isn't she the prettiest little princess!". Linda tells me this woman has cute-sily verbally accosted Grace several times in the past and this day was no exception. When it came to payment time, Linda noticed one of those scanning donation flyers for Autism Speaks and decided to give. "Oh it's a worthy cause, a very good cause" the cashier said (Imagine the voice of Fran Drescher and you got the idea-r!). Linda says "Yea, I know it's a good cause. My 4 year old has autism and Gracie here is PDD."

Suddenly the air rushed out of the conversation and the women became silent and visibly flustered. So much so that she packed but forgot to ring up two DVD's she was buying (we took this as HER donation for autism). No more princess, no more cutesy comments.

Linda came home and said she was disturbed by the incident. I said "Well, what kind of response were you expecting from her? 'Gee, I'm so so sorry?' ' Wow she doesn't LOOK autistic.'?" In the woman's mind, she was put in the same position as saying "How's your husband?" to someone who just got divorced, lost him to cancer, or is going through some other unexpected trauma. You're stuck for words. "You're better off without him"; "He's out of pain?"; "You know, they're progressing so fast on that" Those lines could get you in deeper trouble than the "How's your husband" line that started it.

It got me to thinking, what response should Linda have given HER? With Autism Awareness Month on the doorstep, we all have a duty to raise consciousness about who our kids are and what we have to do to get them ready for the world. I was trying to think of a one liner, a quick superficial type comment that could resonate with the woman long after Linda left and would hopefully still be ringing the next time her or another parent with an autistic child came in the store. Something like "Yea, some autistic kids might throw tantrums because of the florescent lights, Gracie just tends to repeat entire Dora episodes and is not good with conversations with strangers, but hey, what kid LIKES to talk to strangers!" A little too long but close.

So, I'd like anyone's suggestion for trite, quick and impactful statements to use in the month of April; it may not get us free DVD's but it WILL help get the word out...

Conscientious Objective

War has been declared against those who are technologically challenged. We are bent on removing all indications of computer illiteracy. All children of parents afflicted with this disease deserve your pity and support. Many of these parents have been brought back from the brink of certain lifelessness and can be taught to behave like all of us online...

We must understand and accept those with bi-polar disorder. These bouts or euphoria and depression are not a problem to be fixed, but a way of being to be understood. We should allow them to decide for themselves if they wish to change.

Neither of these two statements make real sense, but in essence that’s what ‘battle’ lines are being drawn between the neurodiverse and many other groups advocating an all out war on autism. I'm really not trying to get into a discussion about what analogies can be drawn between bipolar and autism, I was just trying to make an extreme comparison to some non-life threatening (bipolar can be, I think) neurological disorder.

Wars are society’s way of mobilization, I know it’s not right, but what other metaphor do we use? War analogies provide rallying cries, stir feelings, promote conviction and imply a grand effort. But I guess what’s at the core of the discussion is the connotation that war brings. It’s the fact that the terms are too strong and negative to be used.: War, Battle, Combat and, what’s really at the core of this discussion, the word ‘HATE’.

But there is a war of sorts being fought for services, for awareness, for tolerance, for better diagnosis. I guess that's where the difference is, we are fighting FOR someone and not necessarily AGAINST anything except maybe fear, ignorance and prejudice-- against society’s perception of autism.

I guess you could rally around a relief effort banner; it’s the only other time we have mobilization. But like the tsunami, a relief implies some kind of disaster; and the same way you can imply a war against autism you can mis-attribute the disaster to those people on the spectrum rather than the condition of services, diagnosis, and insurance coverage.

We clearly have to step away from the 'autism is the enemy' type of speech, as well as the autism-as-trainwreck language. Autism, regardless of your views on causations, is a lifelong way of being for autistics and we can see how the language is received by those on the spectrum. I used to try the ‘hate the disease, love the child’ creedo, but that would imply that :
A: it is a disease and:
B: you can separate it from the child.
I can accept neither statement at this point. It is a disease only in that something is preventing her from communicating to the best of her ability. I can separate it only in that I can see past what’s blocking her from me.

This brings us to the ‘passive’ side of the discussion. While every step of the way, I want my girls to feel that they are sliced bread cubed (mathematically not culinar-ily), I feel I owe it to them to push every avenue I can. I want them to know that we have tried every reasonable approach. That something as trivial as money was not an obstacle; that time was not a consideration. “TO DO WHAT?”--- you and me and my girls figuratively ask? I want to improve their communication, their concentration, their mood, in short, I want to improve their chances in life.

My wife and I come from similar backgrounds; where praise was sparse, excellence was assumed and more was expected. Blame it on my roots…we’re pushing the girls the same way we push the other three. Not towards normalcy; just toward their excellence.

So can we use the war analogies? I think not. Too many battles are raging in real life with real people fighting and dying. War analogies have been used too many times to stamp out monsters like polio, small pox; to fight cancer, leukemia, muscular dystrophy. Leave the war analogies to the killers and maimers. Let autism fight the fight of passive resistance; but nobody’s gonna stamp out my girls in my lifetime…

Meanwhile…I think I’ll teach my dad how to blog…

Radar Built into Children

Scenario that prompted blog- Minor neck infraction brought on by standard Sunday night stress. Wife had touched my neck and I requested a neck massage (Very rare occurrence that I ask). Massage begins, one knead...lean in...two kneads...OK starting to find the spot...three kneads..."MOMMM"? Kneading stops...standard frustration ensues. "What"? Linda says..."Nevermind..." the response comes. I begin cackling uncontrollably, even the oldest finds the irony in the situation.

Parents have claimed radarlike abilities on their children; the ability to sense moods; to 'know' when something is wrong with their child. But I think the radar is reciprocal. Children have an uncanny ability to stop a serious conversation; ruin a mood; destroy the climax of a movie; come in just when they are being talked about; or arrive at just the moment a vulgarity leaves our mouths. They either KNOW when their interruption will be most destructive or they are just ALWAYS interrupting. I thing it's the latter, but that is just a way to ensure the former.

There was a great Baby Blues comic strip that illustrated the axiom that Linda and I have 5 minute conversations that last 12 hours. We have become experts at maintaining focus on a subject despite the verbal and physical battles that rage on around us. That is not really true, we can't focus on ANYTHING. "What was I doing?" is the single most asked question to ourselves. “I’ll talk to you later about it” is the top rated interpersonal phrase uttered. Only that, sure enough, as the conversation begins after we feel we are safe, inevitably a child will crawl out of the bedwork and present us with a hopefully sufficient enough conundrum to allow them to either stay up a little later...or win a position on the master bedroom’s floor.

We do have our defense mechanisms. Linda has this 'voice' that she has told me is her 'tuned out' voice. "MMMMmmm..." she says in mock interest as one of my sons drones on about a specific scenario in a video game. I found it amusing until she used it on ME once and didn't realize it until I pointed it out. It's a coping mechanism; it's the same way you have to filter out the 'noise' of all the information that surrounds everyone; you're in danger of missing good insider info though, but hey that's life. "MMMMMmmmm, the cat's stuck in a box of styrofoam peanuts? That's nice honey, go downstairs and play". As for my defenses, I only have a psychotic growl of “LEAVE ME ALONE” when my cup runneth over.

Meanwhile, the massages are that much more sweeter when they can be given. The conversations are more intense when we can have them. Although, whenever we get the time to have them, we always have this ‘twitch’ in anticipation of the incoming ‘whatever’ that we may get at any moment!

We've Forgotten What's Normal

I have three of those T-shirts that Linda had the kids make for father’s days past; you know, the ones with the hand prints of your kids that say "Best Dad, Hands Down"? I have one from mid 1999 with one set of handprints; one later with 3 sets of prints: then one with 5 sets. Linda and I were married in '88 and we had 5 years of childless bliss; then we had Aly and had 5 years of a single child (childfull bliss, not quite, but still fun). Then, in the course of 5 years we had 4 more.

In the first 10 years, we had given ourselves plenty of time to adjust to new phases of life; these last 5 years, life has barely given us time to breathe. Someday I detail it out, but today, I want to focus on trying to find out which way is up, and to see if anyone else is suffering from this 'normalcy vertigo'.

These last three years, we have been transformed from a large, 'normal' family, to one dealing full time with special needs children. We've learned more than we've ever expected (or wanted) to know about ANY disorder. We have readjusted our outlook on the future. We have re-geographied ourselves. We have had to reassess what we considered 'normal'.

The 'What to Expect...' toddler/ preschooler books are now in the landfill (maybe I’ll write “What to Expect, the Autism Years”). Potty training, formerly fretted over at 2 or 2 1/2 , is now almost a far-fetched fantasy. Imaginary play that was, in the past, a source of amusement and endless game playing is now a mere memory and something relegated for the 'older' 3. Some many things taken granted for the first 3 times are now things we must scratch and claw for.

Despite, or maybe because of, the mayhem, I have found myself hyper aware of every advancement they make, perhaps 10 times more than I relished accomplishments of our first. Talking, reacting, imitating, defending their ‘turf’- once milestones that were whipped by at 70 mph are now watched with dumbfounded deliberate exuberance, like teenage boys passing a hitch hiking girl in a short skirt. I somewhat feel like a cured cancer patient who gets a new view of life; he may have half a lung, but he has a whole new perspective on the world.

I feel torn, because I feel bad for the older three. They had several years of normalcy before being thrown around in this storm. But they are young, strong and resilient. They do take it hard sometimes, but from the autism perspective, they take it in stride and are regulars at the monthly sibling support group at Livie’s school. They miss out on so much though; so many lost opportunities because we are tied both financially and physically to caring and development of Grace and Liv.

It’s like having two families; maybe something like merging two divorced families together. “We did things like this in the past but now things have to be done this way because of the ‘other’ family”. Except, like a dog with 3 legs, we know nothing else; we hobble along as if it was never an issue. We/they take it for granted that outings must be planned for far in advance; that disappointment over missing things because of time constraints is sometimes the norm.

I could go on and on with the details. Maybe I can do a “Child of the Month” and detail out their unique ways of dealing with this autistic life. But anyway, as you probably have already said to yourself “What is ‘normal’ anyway”? With extended families, weird relatives, divorce, gay marriage and adoption, single parent households, grandparents/relatives raising children, there IS no such thing. We had felt we were out of the ordinary because Linda and I have maintained our marriage for almost 20 years; now we’re not normal for another reason: 2 autistic kids. I guess I wouldn’t want it any other way…

Mating Habits of Household Inanimate Objects

I bet you were aware of this phenomenon without actually thinking about it. It has recently been discovered that ordinary household items have the ability to procreate. Research is ongoing as to the nature of reproduction, but evidence is mounting of these reproductive qualities being legitimate and posing a real threat to households across the globe. Being in a house of 7 plus other living creatures, I find I see this phenomenon at a faster pace than other households. Here are some examples to look out for:

• Dishes, cups, bowls, forks, knives always seem to procreate, they will spontaneously generate at the sound of the dishwasher running. Dirty dishes are the only variety that regenerate; clean ones are an endangered species. They are a stealthy bunch and always resurface exactly half way through the load. Use of paper products will lessen the infestation, but may lead to the scourge of excess garbage.
• Laundry is the fastest breeder, by far; it moves like dandelions on time lapse photography. It can be seen spreading outward from hampers and upward and outward in laundry rooms. It is only the dirty variety that is fertile, as with the dishes, the clean variety is on the endangered species list. Socks reproduce, but curiously their offspring have little resemblance to the parents and they normally have only one child. Only remedy for these is lack of proper hygiene and subsequent loss of friends
• Fast food toys or as I like to call them "seconds upon seconds of playing enjoyment" . These can be controlled with proper diet.
• I've noticed lately that stuffed animals appear to be spontaneously generating. As we all know though, science has disproven this theory, it has now been discovered that Beanie Babies bring their own special eggs and fertilize other unsuspecting sewn creatures. These are overrunning my daughter's room and are beginning to get a foothold in my sons' room as well. if anyone knows a good exterminator in NJ, drop me a line

I'm sure research will uncover other hazards in this area, if you have any sightings, contact the Center for Dust Control (CDC). I am off to write my thesis on another area of household theory, Physics of Children and Households. Some topics I am working on:

• Magnetic Attraction of a child to the phone at the ear of a parent. May simply be an attraction to anything busy.
• Law of Spills occurring during moments when time is at a premium. Close correlation to bowel movements of toddlers and proximity to time needed to leave for school.
• Volume of parent's voice in inverse relation to the relative ease and desirability of the task. Wives claim this continues into husbands as well.

Freethinker

I had to write a note about Liv's recent independent forays into the world of cognition.

Last week, she made a leap in her PECs program, Picture Exchange Communication System for those who do not know (including me, I had to look it up!). She had been working off of picture from the cover. But last week at school, she found her cover empty, so she proceeded to open her book and go through the pages until she found what she wanted and pulled off the picture she wanted! Her teachers were shocked because no one had been working on this with her. To make sure it was not a fluke, they tried it twice more and both times she picked out some different things she wanted. She also repeated it at home this weekend!

OK, one thing is...one thing, but another thing is ANOTHER THING! Today, she came in from riding a bike with Aly and the therapist. She was thirsty and when no one was quick on the draw, there was a cup and a small bottle of juice on the dining room table, so...she just poured herself a glass! Again, nothing she was working on; this is no where close to what she normally does. Her fine motor has been getting better over the past month, but this was unexpected!

It's obvious to us she is paying attention, she's just picking this stuff up from watching us, her teachers and, oh yea, her little sister. Both Grace and Liv have been playing with some kid percussion instruments lately. The teachers say and we agree that we have to push her a little more, she's really beginning to progress and maybe she's just bored and needs new challenges.

Sorry to fill a post bragging, but you have to sit back and admire the view when you hit high ground!

Bill

Prescription for Success?

Linda made a comment this morning that somewhat shocked me: "For the last few months, Liv has been off of all prescription medications she'd been on since 2004"! We have fought to loosen bowels then fought to solidify them; fought with reflux, vomiting, inflammation as well as pain and supposed allergies. She's been on Xantac, Singulair, Miralax, then Sulfasalizine, Pentasa, Prilosec (note: correct spellings on pharmaceutically-invented names has never been my forte nor priority). We have run the gamut to try and help her with her gastrointestinal issues

Today, she has had far fewer night wakings, better moods, quicker cognitive processing time. Most of her bowel movements have been regular; if temporarily blocked, instead of a 'prescription', we are instead using slightly larger doses of magnesium than her normal daily dose and she is clearing up.

Yea, I could attribute all of this improvement to growing out of the 'gut' phase; yea yea 'no epidemiological study has found a connection togatroinblahblahblah'. As always, my problem with epidemiological studies of autism is using the whole of the group to study and dispute specific issues. If entire set A is not caused by or have symptoms of thing B then the broad relationship is disproven, but the specific issue for specific subsets remain. Kinda like trying to find out what causes cancer by looking at the whole 'cancer' group. Autism is complex (IMHO, of course) and no simple solution nor symptoms exist. It could also be that the stress of being non-communicative is causing some GI issues. Anything except what we are doing could be the thing that could be helping her.

In other words, my belief in the vitamins/minerals helping her GI issues (according to some people) I am the same as a baseball player with a hitting streak with very dirty and smelly socks because I have not changed them for fear of breaking the luck. Problem I see is that much of what we are doing is not irrational bead-counting, it's common sense nutrition. It's more like the extra batting practice or a new stance in the batters box, more science than superstition. Ooooh, baseball's coming soon! Not a fan per se; more a fan of the IDEA of baseball, a la Field of Dreams, the Natural or Bull Durham.

I won't get into conspiracy theories that state that big pharma will bury 'home remedies' in order to push their own, study-backed, and infinitely more profitable versions of 'cures'. Nor will I rail further on the hypocrisy of for-profit companies controlling what and how 'cures' are brought forth and are judged more on how much they will make than how much they will help. Sorry... I got into it and railed...

I guess the difference in our maturity in this quest to help Liv is just that. We are no longer trying or doing things to 'cure' her of autism. We are doing things to help her mood, to better concentrate, to make her feel more comfortable so she can help herself.

Trying existing pharmacologicals, natural or otherwise, to solve problems either not covered by specific prescriptions/therapies or inadequately covered by them. That's how I would define our involvement in biomedical interventions at this point. I'm surprised how many of those you would not suspect, are really closet 'biomed' parents as well.

Hey Bill, I got an Idea!

I would like to do a half funny, half serious analysis of a problem that I, and my other namesake, Bill Gates share a common interest in. If successful, since we share a same name, I would like to humbly request a mear 1/2% of his wealth or even salary!

Bill is concerned over the lack of technical workers available in the US. He is proposing we 'beef up' our education process to better train our children in the ways of science and mathmatics.

ARTICLE
Gates also called on lawmakers to give more resources and attention to improving the teaching of math and science — knowledge essential to many of today's jobs. Another recent federal study found 40 percent of high school seniors failed to perform at the basic level on a national math test. On a national science test, half of 12th-graders didn't show basic skills.

"We simply cannot sustain an economy based on innovation unless our citizens are educated in math, science and engineering," Gates said.

Legislation moving through the Senate, backed by Democratic and Republican leaders, seeks to get more people to become math and science teachers and would improve training for them. The bill also seeks to get more highly trained teachers in poor schools and would offer grants to states to better align their teaching with what kids should know to succeed at a job or in college.

Well, I have an addendum to this legislation... let's figure out better ways to educate the autistic. After all, many are technically inclined, task and number oriented and are maybe more than willing to take on the drier, less social oriented demands brought on by many jobs in this field.

Gates said the nation's economy depends on keeping the country's borders open to highly skilled workers, especially those with a science or engineering background. Federal law provides 65,000 H1-B visas for scientists, engineers, computer programmers and other professionals every budget year. High-tech and other employers say that's not enough.

Hey, Aspies can fill that 65K !
If we look at the numbers from the IOTA consortium (Institute of Thin Air for those in the know), we have some 1,000,000 autistics in the population. If 70% are able to function in society on an independent basis and we say that less than 10% of those are under educated, we have our 65K target.
I know I'm over generalizing saying autistics are prone to science, engineering and computers; but it's better than saying they are prone to head-banging, feces smearing and are just 'shells'!

Anyway, with this Austistic (or Aspie)Improvement Act, we would identify those children on the spectrum, put them into accelerated classes in their specialty of choice, and have them out in the workforce in less than 10-12 years! The only need is to have some choice classrooms and specially trained teachers who can learn to deal with the special educational challenges of autism.

Hey, we can even IMPORT Aspies from other 3rd world countries. The US could become a hub for autism training. We could have a technical university to rival MIT (MIT is already devising ways to syphon off our best talent, no doubt-- we'd probably be syphoning off theirs!). Heck if we need to fill in some seats, we could even reinstitute thimeresol in vaccines and manufacture autistics if you believe the rhetoric being espoused!

I really think that Mr Gates would go for it. After all, he is a closet Aspie, right?

PS
Case and Point, they're already getting started with the design!