Saturday, October 27, 2007

Into the Toilet Bowl of Death Rode the 7

It is time---Raffikki-Lion King

Oh...My...God... we're finally going down the road toward potty training the girls. The school has begun to put pressure on us. After all, they ARE 3 and 5. But we've been out of the ballgame for more than 1/2 dozen years, it's more frightening than a guy name Jack coming through your bathroom door with an ax! Be forewarned that the proceeding program is rated 'G'...for Gross.

With the exception of a 1-2 year hiatus between our first and second, we have been changing diapers for 13 years now. I always say that I personally have changed more diapers than most women. OK, I hear you women, putting your hands on your hips saying " daymn well better have." I admit that I probably only changed between 30 and 35% of the diapers on my children; my wife, probably 60% and the rest by the nameless faceless friends, relatives, caregivers and therapists who have crossed our path. But 30% of some 10 years is twice as much as 80% of 2 or 4 years. I have the pick the childs' butt up by the feet with three fingers thing down pat to where I can, almost literally do it in my sleep. But enough of my braggin'...

With Liv on the spectrum, we never had even considered seriously going on the potty wagon and Grace has kinda went along for the ride; we probably could have started on her a year or so ago, but our heart was never into the struggle. We lately have had some incidents that have made us look at it a little more closely (eewww, it's really yucky). Liv had a MAJOR blowout in the waiting room of the speech therapist; Linda was beyond traumatized, as was the carpeting in the office. So much so that the seating arrangements have been reconfigured henceforth. Plaques should have immortalized to commemorate the 'spot' but alas, not many share our views.

That event and several other 'Top 20 Grossest Moments in Diaperdom' that have occurred, so that when Liv's teacher said "We should try to potty train her", we realized that ours wasn't the only suffering out there. On top of the poop (or maybe just before it), Liv also holds the distinction of having THE smelliest flatulence in the Northeast. She far surpasses me, which family members can attest, is no small feat. She is probably the only child in the school that illicit calls home to proclaim that "she was sent to the nurses because they were afraid something may have gone wrong inside". I think it was more the same as people fleeing from Mt St Helens (she's gonna BLOW any minute!). Even non verbal kids in her class will hold their nose and say "peeeeewww!"

But seriously, Liv has had a long fight with GI issues, which had made potty training next to impossibly in the 3-4 year range. Now that we have her 'settled down' in that area, we now have to work on the coordination. Grace will be easy; just preschool and one therapy session a week will be a cakewalk to get everyone on the same page. Her echoic tendencies should also make it easy to brainwash her, I mean, get the point across about the potty. Liv will be another story, with a full day school and no less than 3 therapists to coordinate with. I hate to waste therapy money on potty breaks, but what can you do?

I just get this feeling that she's going to look at us cross eyed. On the few occasions that we've put on the potty, she's given the reaction that we are trying to dispose her in there. The battle plan is to put her on the potty every 10 minutes for 5 minutes until the blessed event happen, then give her praise as if she has solved world hunger. Great plan with the exception that we barely HAVE 15 minutes to implement it. With this schedule, Grace also on the same and the 'normal' traffic in the bathrooms and I am anticipating a full blown potty war. Accidents, impatience, out and out defiance, exhaustion and of course, comical situations and a few new entries into the Grossest Top 20 are expected.

Wish us luck, we're gonna need it!

Thursday, October 18, 2007

I Got a New Drug...

Lately, I think I've found a new drug....

A few weeks ago, I went to a discussion group about how to negotiate through the maze of insurance company jargon, denials and stonewalling to get services paid for services related to autism. It was given by a heroic couple who I'll not mention by name...I'm not sure the publicity is good for the cause they are fighting (if you guys want me to, if you are reading, I'll shout it from the rooftops!). Anyway, me and about 30-40 other parents soaked up the info that they were giving and marveled at the hard work they were putting into there crusade against the legalities of insurance coverage for autism therapies. In my mind, they are truly to be commended for their hard work, again, in my mind, they are truly heroes to us all in the community.

I'd been having some conversations with them on some autism boards a month or two prior to this, and I had given them some words of encouragement, congratulations and we commiserate on the state of insurance coverage throughout the US on these boards. I was glad to finally meet them in person and they reminded me sort of like the way my wife and I work: each attacking the issue of autism from slightly different angles but both passionate about the end goal and with their child's progression, "take no prisoners...I'll take the right flank, you take the left". We got to the end of this discussion group and the gentleman said that he couldn't have gone on without people like me on the boards spurring them on and giving them the incentive to move forward.

ME???? That ranting individual that half the time makes no sense and the other half is trying to make a decision on an issue? I was dumbstruck...I never thought that I could make a difference in peoples lives with my offhand comments and railings against the system! I left there with such a head rush that even the Yankees getting knocked out of the playoffs 20 minutes later couldn't bring me down. I had helped someone who clearly, was doing 100X more for the cause than I was!

It's gotten me hungry for more of that feeling. I'm trying to think about how I can help people and organizations with their issues; it makes me think that maybe I CAN make a positive impact on this little universe that I now occupy in the autism world. That maybe THIS is my purpose for having God send me in this direction. Not only to see how much I can endure, but how much good I can make of it AS I endure it. There is so much to do, but if I can push a person or an organization to greater heights; help someone out of a hole that they feel they are in with their child; offer a suggestion that changes the course of someone or something for the better---maybe it would all be worth it.

I guess that's what people want out of life generally, not just in the autism world. I hope I can get me some more of that feeling's a nice high!

Monday, October 08, 2007

Keep Me Going, Lord

Words of inspiration from my words of wisdom file, for getting me though the tough times:

Keep me going, Lord- Aunt Hilda

That which does not kill us just makes us slower and easier to kill- Snibbor Ynot

I know God won't give me more than I can handle, I just wish He wouldn't trust me so much!- Mother Theresa

Put your head down and just do it...- former ad executive from Nike who had a coworker who was much more succinct.

Lord, grant me the wisdom to prioritize the things I need to do
The stamina to do the things I have to
and the serenity to let go the things I can't-
First draft of the Serenity prayer

Can you tell it's been a tough weekend? Today/Monday was my 9/80 day, my work allows us to work 9 hour days and take off every other Friday. I have just changed over to Mondays to see if we can alleviate some of the work off Lin. Fridays are 'lite' days, no homework; Mondays are a little more crazed. 'Cept that this Monday was Columbus Day, kids were off. That don't stop the work though: Liv was up at 5; two kids to the dentist at 9...Liv speech at 2:30. Lite day except that Linda wound up getting sick and had to go to the doctors today. Bronchitis which could have been just as easily pnemonia with the symptoms.

Getting ahead of myself though. Friday after work I set off to finish emptying (finally our storage facility in Sussex County, two years after we moved. After that I went to my very first discussion group about autism that did not involve keeping children occupied while Linda gathered info before I ran outta steam. Great stuff, but I did not get home until 10:30. From there I get debriefed on the goings on for Saturday; I was flying solo with 4 of them while Lin and Aly went out for the now traditional girls day out for Aly's birthday last month.

Saturday is a surprising cakewalk in the morning, not because of my expert child readying skills, but for Lin's careful setup of the girls stuff the night before. They have 'CPU' from 10-12 on Saturday (Childrens Progress Unlimited in Hazlet NJ ask me about it if you need..fantastic), clothes laid out, drinks ready, bag packed...all dad need do is basically turn the key on the minivan and make sure the t shirts are not on backwards. Still, I managed on time performance getting them there and getting them back again. Grace's hair was a little worse than normal; Liv's was perfect as usual (Lin did it before she left). Anyway, got through lunches, dinners, bedtimes, all the supplements, all the diapers...all without a major meltdown (ME melting down!)...
Linda gets home at 10pm Saturday night without Aly (at Gramma's overnite) and WITH a heaviness in her chest. I tell her to take the sleep late shift on Sunday; I get to sleep 'late' too...7:30...(I don't count Liv getting up and moving her into ur bed at 3am...we're getting used to it.
Sunday: Linda's kinda down for the count. She's taking it slow, I'm kinda back to flying solo again...I'm beginning to appreciate Linda's glazed look that she has on a Wednesday or Thursday night...It's not THAT physically or mentally strenuous, but it's a constant buzz or hum...just loud enough to drive you mad, without being noticable enough for anyone else to hear.
Brings us back to Monday/today. The doc was ready to write her a note excusing her from work...she almost took it, to get a rise out of me. I let her rest this afternoon, doctors orders. But, like many other weekends, I'm ready to go back to work...for some well deserved rest!

Wednesday, October 03, 2007


lalalala...lalalala...Elmo's World, that little ditty, I have come to realize, is the warning sign to get two of my kids out the door. The first song, at the beginning of his segment on Sesame Street, tells me we have to get out to the car to get my oldest to the bus; by the time I get back some 10 minutes later it is 'crunch time' to get the last minute details done on Liv before the strains of the ending Elmo song signal the inevitability of Liv's bus pulling up. Our bus driver has recently been reliably punctual due to complaint from ill-mannered parents during back to school night; imagine complaining on the bus's timeliness after less than a week back!

Today's morning was a little more hectic than normal; I was up 15 minutes late, leaving us 50 minutes to feed dress and get Liv out the door; easy if that were the only thing we were doing. But, in 'emergency mode' Linda and I (Linda mostly) are a blur of activity and we even wound up with a few extra seconds to spare. In any event, eggs should be the only thing scrambling in the morning; we both hate the way it makes us feel. It would help if Liv slept in her OWN bed all night (and if we had the A/C on last night)!

This time of year is most perplexing in the NJ area because it's hard to figure out how to dress everyone: mid to upper 50's in the morning; 70 up to even 80 in the afternoon. Me being warm blooded and my wife on the 'colder' side, the struggle to dress for survival is always a source of friction:

"Should they go in capri's or shorts?" Linda asks
"Dunno," Replies meteorologist dad "it's going up to 80 this afternoon."
"How's it out NOW though?"
"Just a little chilly, probably could get away with shorts."
"Maybe I should put them in long pants?"
"No, no, it's not THAT bad."
"So capri's?"
"Yea, you could do that."
"You sure they won't be TOO hot?"
" Capri's or shorts, either way."
"What do YOU think?"
"How bout a sweater?"

You see where this goes, the indecision of what's going to be best, what's going to provide the maximum benefit with the minimum discomfort. It struck me though, that this is the same with therapies for the girls. We have no guarantees for what the future weather will be, we can only provide what we think will be the best for them in their current state. No one's there saying "If you do X hours of ABA, Y hours of speech, Z hours of OT, they'll be fine." What's the best outfit (therapists/programs); what's the right sweater (mix of therapies that we can shed or bring back depending on their current state). There is no real right or wrong answer; it's all about how it fits them (and the comfort WE feel in providing all the thing we think are the right thing).
We can hope for more sleep tonight, earlier alarm reactions from me. Hopefully, we can also get some clearer pictures on what therapies will work best for autistic kids, because scrambling is for eggs indeed...