Summertime and the Livin's Easy?

Oh YEA! Time for summer vacation! 10 days away from work for me. Well... WORKwork. We still have a house to clean; laundry to do (aka Mt Colors and the White Cliffs of Whites). Three NT kids also need entertaining and persuasion NOT to kill each other. We also have two youngsters on the spectrum with a drastically reduced school schedule. It's a pretty universal fear amongst the parents of younger autistic spectrum children that they will 'lose' their skills over the summer. Schools either have greatly reduced programs or are non existent for those 'higher' functioning Autism Spectrum children.

Time to start supplementing with private camps, therapies and for those highly motivated and creative parents to create their own programs. (GROAN)...if only... If only we had the time, the patience, the extra appendage to do some of this ourselves. Get the other kids motivated to assist, become junior therapists. Draw up a schedule, have each girl get a half hour a day of one on one with one of us while the other one is entertained by the three others.

REALITY CHECK...REALITY CHECK...REALITY CHECK...

Linda has precisely 2 hours 31 minutes and 47 seconds of free time per day, which INCLUDES the time spent in the car going from therapy to therapy; including laundry and cooking time. A FedEx logistics manager has an easier job! The kids can be motivated to do individual projects, but a summer of assisting with therapies would result in a greatly depleted bank account; because promises would need to be made for trips to various theme parks and shore points in the area. The least of which results in 3 figure costs...

So, back in the real world, we scrape together what we need to send them to private 'camps' We have a wonderful autism non profit in Northern Monmouth in NJ that operates at a greatly reduced price to cover off on those spaces between spring and summer sessions and summer and fall. Swimming lessons/Sat. OT once a week for Liv. Since Grace only started school last month we hope that there won't be too much regression. I mean, we have the 3 other kids in some activities this summer, but I don't worry about their skills falling back. I guess I do, but it's not as critical if my son loses his division/multiplication skills as my daughters losing their socialization skills. It's part of that psychosis an autistic parent goes through needing to make sure we do all we can with the time we have.

I do feel bad for the three older ones though. We get requests from various parents that "we have to get together and do something with the boys. They're going to get bored." With all the therapies that still go on, with the school schedule that's STILL there in the summer for special needs kids, we're kinda hamstrung and can't as easily take them on excursions that 'normal' parents do. In that respect the phrase should be "summertime and the livin's guilty".

Anyway, no matter how you slice it, summer RULZ! Remember those endless summers when you were a kid. We have a gang of 8 kids all within 5 years of each other, a group of houses in a cul-de-sac that will ensure dawn to dusk running around, 1000 adventures, arguments, skinned knees, ice pops, ball games, lighting bugs, claw games, and seashells. Happy summer everyone, may they create a new month between July and August to keep it going even longer...

_____

With no relation to the post, here's a tie to the picture of Madam Marie's and to one of my fave songs about the summer:

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4th of July

Bruce Springsteen

Sandy the fireworks are hailin' over Little Eden tonight

Forcin' a light into all those stony faces left stranded on this warm July

Down in town the circuit's full with switchblade lovers so fast, so shiny, so sharp

As the wizards play down on Pinball Way on the boardwalk way past dark

And the boys from the casino dance with their shirts open like Latin lovers on the shore

Chasin' all them silly New York virgins by the score

Sandy the aurora is risin' behind us

This pier lights our carnival life forever

Oh love me tonight for I may never see you again

Hey Sandy girl

Now now baby

Now the greasers, ahh they tramp the streets or get busted for sleeping on the beach all night

Them boys in their high heels, ah Sandy their skins are so white

And me I just got tired of hangin' in them dusty arcades, bangin' them pleasure machines

Chasin' the factory girls underneath the boardwalk where they all promise to unsnap their jeans

And you know that tilt-a-whirl down on the south beach drag

I got on her last night and my shirt got caught

And they kept me spinnin' baby, they didn't think I'd ever get off

Oh Sandy, the aurora is risin' behind us

This pier lights our carnival life on the water

Runnin', laughin' 'neath the boardwalk with the boss's daughter

I remember Sandy girl

Now now now now now baby

Sandy, that waitress I was seeing lost her desire for me

I spoke with her last night, she said she won't set herself on fire for me anymore

She worked that joint under the boardwalk, she was always the girl you saw boppin' down on the beach with the radio

The kids say last night she was dressed like a star in one of them cheap little seaside bars, and I saw her parked with Loverboy out on the Kokomo

Did you hear the cops finally busted Madame Marie for tellin' fortunes better than they do

For me this boardwalk life is through baby

You ought to quit this scene too

Sandy, the aurora is rising behind us

This pier lights our carnival life forever

Oh love me tonight and I promise I'll love you forever

Oh mean it Sandy girl

Now now now now now baby

Yeah promise Sandy girl

Shala la la la baby

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.

The Other Reason We are Exceptions to the Rule

With the autism rate unofficially now at 1 in 150 and, in my opinion, soon to be 1 in 100, I started thinking about how else we are 'handicapped'. In between breaking up fights, coercing my oldest to do some housework, changing diapers, and having a 2 minute conversation with Linda that took 4 hours, it hit me. What's the average # of kids per family? 2.3, right? Just for arguments sake, let's put numbers to the family size (stats from the 'out of thin air' website):

19%- No kids
17%- 1 kid
23%- 2 kids
21%- 3 kids
15%- 4 kids
5 %- 5 or more kids

Believe me, the last group is definitely disabled. I'm thinking of printing '1 in 20' t-shirts for all of us in that last group. Somehow we wound up in that last group. Don't know how (literally we KNOW, but figuratively we can't figure out why). As I am so found of saying, parents of 4 or more are selectively brain damaged. We forget what it is like and have another. But, I think the day is coming where we can be classified and help could be given us for this disability we suffer. Some of the classifications could include:

PDD-NOS- Purchase Diapers Daily-Never on Sale.
Monetary Apraxia- Inability to keep money in the bank
Ought-to-clean-that Spectrum Disorder- Slow changing of color of carpet based on the food and drink-stuffs being served (and spilled).
Aspringers Syndrome- Buying pain relievers in bulk.
GF CF diet- Good Food Caught Fire, we ain't eatin' good tonight

Just the general pathos of having no life should be enough to illicit some kind of fund raiser for those of us stricken with this debilitating disorder.

Example of my stream of conscienceless life:
4:45- I came up with the above idea for a blog entry, Begin typing
4:55- "Hold this", Linda says, and I begin typing with 1 hand, holding a urine sample in the other.
5:01 "Wait, Bill. I can't do this by myself, come here. I wind up with 2 urine samples, typing ceases
5:03- With Linda now 'testing' urine I am now charged to do a bath on one while monitoring the other's bubbles-in-the-sink playtime.
5:06- I now try and continue typing in the bathroom while watching two in the tub.
5:08- Give up typing in the bathroom. Too much going on, as I am also preparing dinner in the next room while older in the tub watches younger.
5:18- Pass Liv out of tub and off to Linda as she is done testing, now devote myself exclusively to supper preparation.
5:28-6:03- I serve as wait staff for 3 of the 5. Cook for all 5; Linda is waitress for the 2 GFCF patrons. No tips received...yet again.
5:41- 6:16- Wait staff squeezes in dinner
6:17-8:12- Bus staff takes over; successfully hire temp to empty dishwasher; threaten bodily harm to anyone not cleaning; household falls in and out of complete anarchy. Amazingly, two youngest are in bed.
8:13- Finally get back to blog

With proper therapy these people CAN be helped...

Bill, Linda, Aly, Jason, Dillan, Liv and Grace


PS If you don't already know, please do not be offended by my parodying of Autism, our two youngest are there on the spectrum. I invoke my poetic license to make fun of it.