GOPS

We have been watching the Ghost Hunters marathon on Sci Fi with our older child (Jason has been banned from even listening because of his ease of fright). If you are unfamiliar with this reality show (in my mind this actually qualifies as a reality show since there are no 'contestants' per se although they did something to get a new investigator), these two plumbers founded a paranormal investigation team called The Atlantic Paranormal Society (TAPS). They go to places where people claim there are hauntings and set up electronic equipment to find evidence. They go in from a perspective of skepticism, so, more often than not, they come up debunking the haunting or coming up empty handed. They do however get some pretty interesting footage, sounds and experiences.

Anyway, Grant and Jason, the two principals on the show, probably can't help us with our nocturnal issues, which is why Linda and I are forming our own investigative group: GOPS or the Grace Olivia Paranormal Society. Dedicated to discovering the reasons for why these two 'entities' go bump in the night and wind up haunting our room, we'll use anything in our powers for a good night's sleep. The past two nights have been a haze of movement of one coming into the room early in the night (1:00 AM) with the other waking at around (4:30-5).

Last night, Grace was clearly coming off of some bacterial thing she had for Thanksgiving, she had a 102 fever and was somewhat uncomfortable, so just as Linda was going to bed, she brought her in and set her up on the Dora futon next to the bed. She was a poltergeist for the next 2 1/2 hours however, moving from her futon across the room, making all sorts of disembeddied sounds, till finally settling at around 3-3:30. I heard the other spirit around 4 AM, but chose to attempt to ignore it. But 4:30 came with a more determined to be heard ghost, as she began kicking the closet door. Rather than risk a full blown haunting with wails and screams, we made a snap decision to bring her into our bed and risk disturbing the other apparition. The elder spirit would not be quelled however, probably due to a gluten infraction at Thanksgiving last night (she got hold of and ate leftover pie crust and was pointing my massages in bed to her belly to help her get rid of gas). So here I am, tired but inspired with this mixture of hauntings in my head from the Ghost Hunters series and haunting of my sleep by these two determined entities bent on keeping us from a reality-based existence through insomnia.

Prodigal Son

While this is no cause to kill the fatted calf and celebrate, it could potentially hold a key to binding a gaping wound in the autistic community and more importantly, help an autistic get out of a private hell;
http://hatingautism.blogspot.com/2007/11/how-do-you-stop-autistic-self-biting.html

My audience is limited, but for the sake of an autistic person, if you are on the ND side, throw aside the personal grudges and lets see if we can help...

When he came to his senses, he said, 'How many of my father's hired men have food to spare, and here I am starving to death! I will set out and go back to my father and say to him: Father, I have sinned against heaven and against you. I am no longer worthy to be called your son; make me like one of your hired men.' So he got up and went to his father."But while he was still a long way off, his father saw him and was filled with compassion for him; he ran to his son, threw his arms around him and kissed him.

Middle-Age Wasteland

Well, I guess Pete Townsend had a musical point about hoping to die before you get old. That is, from a musical standpoint when you have kids. When I first became a parent, I remember walking up the stairs at work humming a Barney tune...THAT was the beginning of the end folks. My television AND music today are not totally not my own. It's pathetic when you actually ENJOY Jack's Big Music Show when Laurie Berkner come on!

I was a raucous, classic rock n roll, denim jacket with all the Zeppelin/Who/Stones patches sort of guy. I had one beat up Carlo Robelli Strat copy and an old Fender acoustic. Now I have twice as many guitars worth 10 times as much... and alas, no time, energy, or hands. You just can't play guitar with one hand occupied carrying a toddler. I tried teaching them to strum while I did the fretboard, just isn't the same though. As far as guitar playing, I went from an almost reflexive picking up of the guitar daily to picking it up if I see the opportunity to sneak out the front door and play for 5 minutes...once a month if I'm lucky.

I've covered my suspicions of an aspie-like stim of playing 'air' instruments. I used to air-guitar to things like Zeppelin's Heatbreaker and Van Halen's Eruption. But since music nowadays usually involves a story about something fluffy, I now air guitar on everything musical on all the kids shows that sticks in my head. Just imagine an Eddie Van Halen finger-tap solo fill instead of the EIEIO verse for Old MacDonald. It's maddening though to find yourself putting an air keyboard line to the theme from Sesame Street.

I used to have a decent (translation: LOUD) stereo system, now my music gets 'played' through the DVD player into the TV speakers. Although most of my music nowadays comes from that wonderful cable TV invention called Music Choice. Every once in a while when the moon is full (and blue), I get to have my 'choice' of music, I'll usually choose blues or revert to my classical (rock) roots.

Not one of my kids tends to share in my musical passion though. I suppose it's somewhat my fault for not ingraining music into the older three. I hope to push music a little more with Liv and Gracie. I have heard various music therapies have a positive impact, but I just want them to enjoy the juxtaposition of music as both a complex mathematical puzzle and an invocation of emotion. I still have that passion for music, but if I can't pass that bug on to one of these little buggers, I will be very disappointed. I'd hate to be institutionalized by one of them at 80 for moving my arthritic fingers to the tune of Purple Haze!

A Night 'Outside' the Life

We got a chance to go out by ourselves...just the two of us (LIN and me, NOT LIV and me). But, of course, we had to have an autism theme. Luckily, POAC of NJ (Parents of Autistic Children) was having a benefit in Monmouth University of the play A Day in the Life, with the music of the Beatles. Someone at work asked me when the last time we were out. I said, aside from movies, shopping and the occasional meal...Nineteen Ninety something...

Anyway, a spendid time was guarenteed for both and they delivered. We didn't win anything but we did win our freedom for a few hours. We were happy to have our wallets lightened for the benefit of such a great organization as POAC. In case you don't know, they provide free (YES FREE) training for parents professionals and school systems on a variety of subjects and therapies for autism in New Jersey. They helped us out much in the early days to give us an understanding of the things we were facing. Thanks for the wonderful time and all the 'Help!' to all of us in NJ!

Stop and Thank Them....

We interrupt this autism rant to bring you a special rant on my personal views:

I moved down to Monmouth county more than two years ago. My commute went from just under 25 miles to just over 50 one way. After a couple of weeks down here I realized I would have to sell my soul to the oil companies in order to continue my commute in the Sable station wagon, so I convinced Linda that we needed a good commuter car. I wasn't going to swing a new car, so I went to a local rent-a-car place and began lusting after a 2004 Sentra that seemed sufficiently scratched up so that I could get a good deal.

After a couple of times visiting the lot after hours, I decided to confront the salesperson about how much. I went to the front desk and the woman said "Yea, jack's here, let me take you to his office. I was expecting some shiny suited fast-talker and i was a little surprised to have the woman tell me "You'll have to speak up for him, he's real hard of hearing....Hey Jack, JACK! Someone is here about one of the cars for sale." It almost sounded like his hard of hearing was somewhat of a running joke in the office. I shook hands with a man who should have clearly been put out to employment pasture a few years ago, but I went with it just the same.

He took me back downstairs and took a long time walking, finding and handing over the keys. I did a solo test drive and came back with the intent of buying. We went back to his office to negotiate. I got him down a couple of hundred bucks, but was more interested in the military pictures and general 'motif' of the decor. I commented on his obvious military service and thanked him for his service to me and our country. He brightened and proceeded to tell me that he was 19 when he arrived at Normandy and had lost his hearing during the ensuing battle.

Jack Morris has always stuck in my head since then. He had been feeble when I met him and I'm not sure if he is still with us. But I'll tell you, his and all their heroics on that D-day will never cease to give me, and I hope generations forever, chills as to the bravery and selflessness it took to begin to rid the world of tyranny. Those chills also apply for every man and woman who have and are serving in our military. From me and my family, I give you my sincerest thanks and appreciation for all you have done and are doing for me and mine and them and theirs across world. Thank you and Happy Veterans Day; may you reunite with your loved ones soon...

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 "Well...you 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!

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 though...it's a nice high!

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!

BLAJDOG's World

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?"

"Capri's."

"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...

Tit for Tat

To continue on the Jenny McCarthy issue (scuse the title pun ;) ), she is hitting some pre-tty big venues on her self-described book tour: Oprah, 20/20, Larry King, Good Morning America, The View, People. It is somewhat heartening to have coworkers IM-ing me about Jenny stories; hearing about relatives calling/writing to parents of autistics saying "have you heard the 'latest' therapies that JENNY is using to help her kids?". Uhh, yea, we've been doing that for 2 years now, don't you remember me talking about that? No matter, it's good to see some of what we've been espousing getting some major media coverage.



I'd be happier than a pig in gluten/casein free schtoof, if it were not for the continued harping on the thimeresol issue. I saw it last night on Larry King; Jenny spouting about vaccines and causation and looking expectantly over at her DAN! doctor Jerry Kartzinel. Jerry looked quite uncomfortable; he knows full well that any misstatement will be dissected, analyzed and shouted down by those looking to discredit anyone who has an anti-vaccine bent. Even Larry King got in on it, asking the good doctor what we should do about vaccines if there indeed was an issue; Larry did not get a good response.



Despite their shortcomings on causations, I thought they have a good story to tell about autism. Our kids our precious; we should question medical wisdom that there is nothing that can be done for them; we should not give up on who they are and can become and that this can be accomplished both therapeutically AND biomedically. Sometimes I fear that my opinion is the minority in thinking that biomedical interventions are and should be distinct and separate from the thimeresol argument. I feel that much of the good biomed can do is swallowed up in the vaccine discussions.



Some are saying that the Jenny McCarthy publicity is actually hurting the autism population. That discussions about vaccines obfuscate the needs of the parents of autistics and more importantly autistic adults. That her 'don't give up' message is demonizing those who choose to not go down the biomed path. While I agree to a certain extent, I would also like to take those to task who are ardently anti-biomed or only pro mainstream approach:

• Isn't it hurting those in the autistic community as well to deny the possible link of gastro-intestinal issues in some of the autistic population?



• Doesn't it hurt some in the community to deny that Applied Behavioral Analysis IS a viable therapy?



• Is it so far fetched that certain autistic children MAY have trouble properly processing heavy metals and/or other insults in the environment?



• Wouldn't you agree that the mainstream medicine is frequently giving people on the spectrum substandard treatment and that; just like law enforcement, they may need to be 'trained' on how to deal with autistic patients and what may be common cocommitants?

I understand fully the need to rail against the one note sambas being played by likes of Safeminds and others locked into the 'hope' that it is all in the thimeresol. But in the pursuit of the truth, I feel we are throwing quite a few babies out with the bathwater. Quackery is pushing easy answers and simplistic, sometimes expensive therapies. I frequently disagree as to causations, but there are kernals of truth in what some are doing that are being whitewashed; things that could help many in the community.

867-5309

Everyone remembers the number who had heard the song, but the girl's name? Jenny, Jenny, who can I turn to? Tommy Tutone didn't have her in mind, but in my world I'm going to steal the song for my purposes and call her Jenny McCarthy. Jenny's our newest spokesmodel for the autism cause. I guess I have to fess up and say that I am a man and, as such, have a certain affection toward a woman who is both funny and sexy.

I did not see her appearance on Oprah, but it is very important, at least to me, to know about things that go out about autism in the media because this is often the only ideas that 'normal' folks get. We inside the autism community are locked in our own internal struggles, both at home and within the confines of the community itself, and we have little perception of what the real world thinks. Shows like Oprah shape opinion for millions. I grapple with the negativity that so many are against in the autism community. But there has to be a balance somewhere between the financial and emotional hardships that families face, without showcasing our children as out of control monsters.

In this case, from what I have read on the Oprah site and from second hand accounts, the appearance was a positive one for autistics, aside from the pro-biomed/anti-thimeresol message that so many find offensive. It has also been suggested that Jenny might be an opportunist just using her situation and celebrity to sell books, while I wouldn't doubt this is one of her top two reasons for touring at this point, I would think her situation is here to stay; and that while further books are sure to be on the way, Jenny is with the autism community to stay.

I wonder whether having a celebrity really gets the focus where it should be. It does allow people to see that it affects everyone and that the autistic child is still a 'normal' child, not a freak of nature. But with all the personal therapists, private schools and tutors nannies and the celebrities themselves taking a 6 month or 1 year hiatus to focus on their child, does the public get a reality-based view of educational, monetary and emotional turmoil faces by us ordinary parents and their ordinary children? Will these self absorbed stars even give a nod to these issues or will they continue on the existential view of causation, healing and reason for autistic existence.

In short, I applaud Jenny getting our number on the wall, I just hope we can open up more discussion topics like how it affects all of us and not just how it affects their careers...

We AIN'T Gonna Take it

I'd like to take a moment to try and help those less fortunate than us, to lend a helping hand to those struggling day after day to provide what is best for everyone. I came to the realization that these noble groups need a helping hand, a rallying point from which to gain momentum. I am, of course, speaking of those hapless fighters for the American way of life, the insurance companies.

I wanted to see if I could alleviate the pressure from my little end of the universe, the autism community. I came up with a slogan, an acronym to help them wade through the sea of bills being submitted by our community. Something that would stem the tide a bit to allow them breathing room. So, for their benefit, I bring you---A.I.N.'T....Autism Is Not Treatable.

This will assist them in stopping anyone with an autistic child's medical or therapeutic expense. Rather than having to say that Applied Behavioral Analysis is 'experimental' and might only help a small percentage of children, they can just say "This AIN'T covered". Instead of having to say that speech or occupational therapies show very slow progress in many autistic children and we can't cover any more than 10 visits, They can simply stamp "AIN'T Covered" on the bills. All those 'concomitant' conditions: seizures, gastro-intestinal problems, motor apraxia, sleeplessness; doctors everywhere are already attributing these things as 'symptoms' of autism, let's just eliminate the burden and stamp them "AIN'T Covered".

Yes, all these can be eliminated from the overwrought clerks and their overflowing inboxes. The country can be safe from these unnecessary intrusions and potential destroyers of the American insurance system. American's can be 'insured' of lower premiums; and all these issues can be taken care of in the place where they rightly belong: all administered by the local school boards in their local communities.

Now before you consider me heartless, think of all those poor unfortunates that are adversely impacted by these unnecessary intrusion on their way of life:

• To the thousands upon thousands of stockholders, many of whom may be your parents and grandparents (some maybe even have autistic relatives) will be ensured a steady flow of much needed income to pour back into the economy
• To the executives, who are pressured beyond measure to post those double digit profits EVERY quarter for Wall Street, lest they are put on the 'sell' list...
• To the doctors, nurses and office administrators who continually have to submit and resubmit these bills
• To the arbitrators and lawyers fighting hard to keep the system fair and equitable for all of America
• But most of all, to all those hard working clerks, overburdened with the deluge of bills from the thousands of kids receiving all these experimental therapies, many of which take YEARS to show any kind of improvement. Rejecting, resubmitting, trying to stay within the confines of the rules and regulations put up ONLY to serve the greater good of society. Their's is truly a thankless job.

Yes, thank you to all you folks, I hope my proposal will make for a better world for you and yours. God Bless America!

Rotation Time

Ah Fall. I really feel sorry for all of y'all livin' way South of the Mason-Dixon line that don't experience it. You know who you are. You have that pair of green and red shorts just in case it's a 'little warm' at Christmas! I commented to someone the other day that it FEELS like school. Meaning it was just cold enough that you could just barely feel it, the sky get that deeper shade of blue, the bees start acting crazy. It's not really Fall that I love, it's this time and just when it starts, about a week before 'near peak' on the tree colors in Northwest NJ. Then November and on, it's just pre-winter.

Anyway, it's that time again for those of us with this sick money saving idea and multi-child households to start packing and unpacking again. We see if we guessed right on the clearance purchases from January of last year. If we guessed right on what things could be passed to the next kid. Did Yu-gi-Oh maintain his popularity?

If I had room and time, we'd have this process down to a science. Alas though, there is no magical corner of the attic with named shelve for each kid and season/year useful. There is no time to sort out the summer stuff, while at the same time, scramble for those long sleeve shirt and that jacket we got on clearance for Jason for 7.99.

Two very frustrating things in this process. One is having all the summer stuff packed and lugged into the attic, then finding the odd swimming suit or shorts. The other is finding the season's clothing AFTER the season has passed. This will be inevitable as I dig through the dozens of bags I'll pile through, only after finding every screw sticking out of the attic floor with my KNEES! "Aw man! Here's all those new short sets for the girls that we bought last fall."

Mercifully, we have some ready-made transition children: 10 hand down to 8 by; 5 hand down to 3 girls. This years clothes become next year's basics for the younger. In theory anyway. The boys are becoming two completely different builds: the older, shorter and skinnier, the younger taller and wider. So forget the interseasonal exchange for them. I can't even figure out how to sort their laundry anymore. Pretty much exact same sizes, pretty much no chance for me to get it into the right drawer unless it's one of their favorites or the Zen master of Clothing identification can point it to the right pile. Confucious (Linda) say: "Stripes of white and Spongebob will pass to Dillan solids of Pokeman are destined for Jason's drawer"

Men kinda get a bad rap in the clothing department. Identifying who gets what clothing is a branch of science like zoology. But mothers think it should be some kind of instinctive knowledge. I'll hold something up and say "Grace or Liv?" I'll get the rolling eyes.
"Is that a onsie" (Phyllum)
"Yea"
"What SIZE is it?" (Class)
"4T"
"Does it have one of those extenders?" (Order)
"No"
"Any stains?" (Family)
"Not Really"
"Is Livie's name on the tag?" (Genus)
"Yea"
That's Gracie's (Species)

See men are used to absolutes, this is an evolutionary science. Kinda like studying those fast-mating fruit fly genetics. I never liked Biology (yea, smarta$$, then why do I have five kids, very funny). So textile biological evolution is not for me...

I still love fall, but I can't wait to get through this sorting process...it ends...probably about two weeks before the spring rotation...

In Biomed Parents' Defense

Bad combo, first week of getting 5 off to school and trying to write on this subject. I tried anyway, despite lack of time/energy; hope passion was enough:

I'd like to try and give another side to a couple of discussions surrounding the rationalizations of parents who choose biomedical interventions. The neurodiverse seem to have an interest in the inner workings of the biomed mind: Kev's account of lamentations of a biomed board and their loss of faith; Mike Stanton's summary of biomed and its motivations

The zeal at which many on the neurodiverse will go at purveyors of biomedical treatments for autism is truly a wonder. It is relentless, impassioned, sometimes merciless and dirty. But, after all, it's for the kids. Protecting the kids is the banner that they can rightfully fly. Most of venom is injected at the doctors and theorists of unproven therapies and causes. But the fervor doesn't end with the doctors of these various practices, they continue on to those parents.


Most of the time, the attacks on biomed parents are focused on those parroting the causation and 'curation', but in my opinion, it frequently paints a large brushstroke across almost anything not recommended by the AMA, FDA, CDC, JAMA, and any other acronym. Frequently, the fact that someone somewhere touted a therapy, vitamin or diet as a 'cure' for autism; the therapy, vitamin or diet is blasted as quackery, glossing over the potential for some of these things to help medical conditions. When pressed, of course, neurodiverse will relent and say that solving autistic children's medical conditions are a necessity and that there may be value to some kids and conditions.

But with communication being an issue, it is often extremely difficult to tell when a child is suffering an ailment vs when it is part of normal issues when dealing with the child's frustrations, sensory overload and the like. What's frustrating for the parent is that mainstream medicine will often look the other way, hiding behind the cloak of 'it's part of the disorder'. That's one unfortunate reality that drives autistic parents away from the mainstream and into the waiting arms of those from every end of the alternative spectrum. A parent with a screaming autistic child, just like those who have screaming neurotypical children, are looking for a reason for their child's behavior. It does not have to be 'part of the autism' necessarily. If mainstream would stop looking the other way when dealing with autistic's issues (maybe have specialists in the field?), then you would find many parents like ourselves moving away from alternative arena.

I wholeheartedly agree that we need to expose those touting a cure or radical recovery, but that does not mean that the observations of improvements by those practicing biomed should be thrown out. Just because those doctors practicing biomed reach the wrong conclusions doesn't mean the premise is wrong. I've read of countless parents who have seen drastic improvements putting their child on a GF/CF diet. The wild notion that 'opiates' are generating autistic symptoms doesn't negate that fact.

I hear frequent accostings on parents saying that they are just looking for the 'normal' child trapped inside their autistic child (Stepford children was the term most recently used). Maybe it's me and my situation of having two children on, shall we say, 'different' ends of the spectrum. One is verbal and some minor issues with communication and interactions; one non verbal with many issues with expressing herself and interactions. It gives me a unique mindset about where kids are on spectrum and what their goals can be, that they can and should have different goals, objectives, and therapies.

I just feel that parents need to get through the grieving process, one of them being denial. But beyond that there is both an acceptance AND yet a desire to improve their issues. Hand flapping is not only a 'symptom' of autism, it is also potentially a distraction; a way to get focused and a way to stay out of focus. It's not about the embarrassment of the child flapping in the supermarket, it's about helping that child to focus that drives a parent to look for ways to minimize the stim. It's be about improving concentration, sometimes even preventing injury. A parent should not necessarily second guessed as t their motives of minimizing 'autistic symptoms'

I also feel that many parents are put into this 'keeping up with the Jones' kids' bucket when they do not deserve to be. I have evolved in my realizations enough to know that the neurodiverse are not about keeping autistics the way they are, but enhancing and celebrating WHO they are, regardless of successes or failures. I think it's time to recognize that biomed parents are not the idiotic, status seeking, monsters that they are often painted as in the ND 'media'.

The Eugenics Question

I recently commented on Autism Web using a link to an old eugenics display from the 20's and comparing it to the current Autism Clock. Since we are isloated for the 'normal' population, I often forget the prevailing attitudes of those not affected by children on the autistic spectrum or children with special needs for that matter.

I had never given the fact that our society screens for genetic 'defects' like Down Syndrome much contemplation in the old days. On some level, I have no problem with giving the choice of whether you are up to the challenge of raising a child, and raising a special needs child is just that much more difficult. But, isn't society giving a prejudgment of what is a worthy life vs what isn't? If we come up with a way to screen for autism, will the same selective process occur?

It's scary to think of the 'old me' coming to a decision on whether Liv was worthy to exist. Hindsight 20/20 of course, never...but FORSIGHT? I have no way of seeing what SHE will become, how could I decide or realize the strength in me to see what I would become? I had no idea that I could handle this life before it happenned.

Then there's Grace to consider. It's one thing to think of Liv, profoundly affected, non verbal, struggling to acheive an independent life. It's quite another to see Grace, autism spectrum, yes, but more than likely, she will lead an independent life...maybe even a 'normal' life, whatever that is. What would these screenings show of her future? There are severities of Down's that are as close to 'normal' as maybe 20-40% of the population (source: fantasy information network, just a guess). Why would we arbitrarily put a stigma on a group of children even more likely to be intelligent and not in need of anything more than an alternative form of learning? Get in line, those 'useless' artist talents, creative writing skills, musical aptitudes, acting and all those other things that, more than likely, will produce less than fiscally productive members of society could be next.

I ruminate over the 'fact' that we, as a family unit, are a drain to the resources of 'normal' society. But why is donning a helmet and travelling by bus to attack others with helmets for possession of a ball on a 120 yard field in an organized fashion considered normal? Why should I feel bad that my child's disability may force dozens of families in my community to pay for this activity? Or that a half dozen or a dozen kids may not reach their full potential in order that my children can reach theirs.

I guess my as yet unproven answer to that is that the cost of those 6 kids is nothing compared to the 60 people who would not have government services because my children would need lifelong services had they not had these early therapies. I say unproven because we do not know if therapies are really needed, since this early diagnosis of autism is a new phenomenon. We also don't know if they will really work long term and we don't know what therapies are most cost effective. So, I fear from society's point of view, someone's going to stand up and say "why are you wasting all our money on a theory?" or, worse yet "why are you wasting our money on something that did not work?"

I guess the most fearful of the questions society could ask is "why are we allowing these people to exist in the first place?". I won't get all sappy and cutsy on you; if society needs reminding of their duty to all of its members, then you can find me and mine in a cave somewhere...

Time Travel Needed...

School starts this week for the 5, and we're in the market for one of Hermoine Grainger's Time Turners or maybe something from HG Wells or something, because all five are in different schools with different start and end times. Add in therapies after school possibly for two and I think Linda will qualify for a job at my company as a logistic manager. Buses arriving at our house at the same time kids are due at school; kids coming home before during and after others needing to be picked up. I kinda liked the old days when kids could walk home; nowadays, younger kids will not be released without a parent present.

We purposefully plopped ourselves within 1/2 mile of most all schools in the town, but we STILL have to pick some up. I guess it could have been worse; we do have two bussed to and from our door and one is bussed to the farthest school. Still, we're both going to probably have to be two places at once on back to school night.

Anyway, Linda's already figuring out what she's going to do with all the free time she's going to have during the week (all of 90 minutes worth per day). Despite being able to do more with that 90 minutes than Martha Stewart on amphetamines, I'm sure I will hear that it's not enough...

The Deadline...

I remember, in a somewhat haze of the stupor of my early 20's, waxing eloquently with my friends about where we would be on January, 1 2000...at the new millennium. How OLD we would be, what we would be doing (and how we would all meet at the same local park on that night no matter what GAACK!).


I had another date that I looked 'forward' to recently, not with the same whimsical idealism, but with pressure and loathing: August 27, 2007, the day that Liv would turn 5. During our 'indoctrination' phase of the autism disorder three years ago, we had this idea of a ticking clock; this clock ticking off the time when she reached five years old and her brain would solidify. The time when it would no longer be possible to change who she was; that whatever point she was at with speech, socialization and attention would be how she WAS for the rest of her life.


This was one of the first things I remember when researching autism 'recovery', that whatever we were doing MUST be done early. God help those who wait. If you didn't start until 3 or 4 or God forbid 5, you'd be fighting with 2 strikes already against you. You better get your therapy going and you better cram it all in before 5, because the timer's ticking.


It was the finishing line, too. Where all the hard sprinting we had done for three years would show us that we had accomplished our goal. That Liv would be speaking, that the isolatory behavior would be gone, the social issues would be a thing of the past. We had this vision of a few months of really hard work with early intervention, then we would be richly rewarded for 'putting our heads down' and putting in the hours early in life. Then we would walk off and go back to a 'normal' life. Liv would be free of autism and we would be back to our neurotypical world.


I can't exactly pinpoint when and if it has stopped becoming a race. Our hope for a quick change back to speaking was definitely one of the first indications that this was going from a sprint to become a marathon. The more we read the more we realized that this 'cure' was a mirage, that there were many different types and degrees of autism and that Liv was not one of those that you would snap your fingers and she would talk, would stop stimming, would become 'normal' again.

We had visions of biomedical interventions being the panacea that would relieve us of the burden of having a lifelong struggle with autism. That magic pill turned out to be non-existent as well. Research has lead us to the conclusion that there are no easy answers as to causes OR cures. So everything we do now has turned from 'curing' her autism, to helping her deal with any discomforts and issues she may have.

By the time Grace was diagnosed some 18 months later, we were neck deep in autism already. We also had the child that we were 'prepared' when Liv was diagnosed; a child with less issues, more progress and better outcomes and expectations. But it was too late, we had changed already. We knew what to do, we did it, we had different expectations; I guess we hoped for the best but expected the worst.


But we still feel we have that pressure there to a certain point, but we have learned to ignore the clock somewhat. But that drive to do everything possible for her and not miss a beat is always driving us batty. Linda will try her best to manipulate the schedule to get every possible therapy into the day. She also devotes her 'free' time to researching and implementing various nutritional and suppliment regimens. All this within the confines of keeping our daughters happy and not overwhelmed. At some point, she/we will have to say when: emotionally, financially and physically. There is simply only so many hours in the day; so many dollars in the bank and so much tears and sweat that can be shed. We've run out of hours, we've run out of money, we've run out of expectations for miracles.

The reality is that autism will be with us for the rest of our lives. I've discovered that doesn't necessarily mean the end of our world or their world. There IS life after 5, and it can be as wonderful as we can make it. There will be challenges, and we certainly haven't given up on Liv or Grace, we have just adjusted our high expectations to something different. I'll not share them because I imagine that 3+ years from now they will change again. I just know that Liv has a long way to go; but she has strong legs to make the journey, she has a strong will and a strong mind to get her there. Grace, fugetaboutit, she's shown us the bridge between the two worlds, she'll be fine...

We're all in this for the long haul, the deadline is passing as I write this. I am a better person for it. Liv, well Liv is and will be who she is, I can only help her become...

Oh, Yea, Happy 5th Birthday Liv! Love, Daddy

Dad Moments

OK, OneDadsopinion has forced my hand and I have to write some of my dad moments (especially since he's got a link to my blog on his site...thanks).

I guess this doesn't have to be autism specific, although you know most of it usually directly or indirectly orbits the girls, but each will get a moment anyway:

Aly: This little sweetheart answered my call and got up at 6:45 this morning to watch the girls so I could get out to work a little early and Linda could get a few extra minutes sleep. She got four 'pressed pennies' from the Parkway rest stop that I was promising.

Dillan: Gave up the pressed penny Aly gave him, just to make his brother a little happier. Remind me to give him that Triple Chocolate Klondike Bar I hid in the freezer.

Jason: Was told by Liv and Grace's day camp school that he is SUCH a great brother for helping his sisters and mommy getting in the school by carrying bags and opening doors. Mom couldn't do it without him. He got the pressed penny...

Liv: Has been lying on the pillow facing me on the other side of the pillow as I try to get her to sleep and she just smiles and beams, I even get the occasional quiet "dadi"! Don't know WHAT I could possibly give her to pay for that!

Grace: The "DADDY DADDY" at the top of the stairs while rattling the gate when I get home, gives me the energy to get through the last push of the evening getting everyone to bed. I opened up the case of Bristle Blocks she asked me for even though I knew it would get turned upside down and dumped, adding 5 minutes to nightly cleanup.

Wow, that was the easiest post I've written in a while! Probably could do that EVERY day...

Easy Breathing for Autism May Constrict Towns' Ability to Breath

Ralph James Savarese started up on Huffington Post with a post called Easy Breathing, about his autistic non-verbal son's ability to communicate his viewpoints via typing instead. His son rightfully points out the injustices society heaps on the disabled, particularly those with communication disabilities. He draws parallels between disability rights and the civil rights movement. While I wholeheartedly agree with his premise and conclusion, I'm having a little trouble with the real-world application. Visionaries see the goal clearly, but leave the difficult path for others to find.

While the civil rights movement sought to integrate and treat everyone the same regardless of race, I have trouble deciding whether we are asking for society to segregate disability and treat them special or are we asking for society to integrate the needs of the disabled into society's 'norms'. Rhetorical question, but it wasn't when I first started to write it. Strange that discrimination can so easily be ingrained into our psyche as to think there is something wrong with what is being asked rather than something wrong with society itself.

I still think there is an issue with the way education is currently administered in the US. With the townships currently having the autonomy to do how they see fit with education, yet burdened with the responsibility of carrying out the laws of the land as far as providing a 'least restrictive environment' to those disabled students, there is going to a backlash of funding fights in town halls in the near future. It just seems to me that all these special services, aids, equipment will have to come out of the township pockets. Will it come to a head when the increases needed to pay for these services are rejected as they are voted down? Or will there be a move to keep those 'undesirable' burdens out of towns so that the extracurricular activities can flourish? Local societies are going to have a tough time in this brave new world, the same way they did when they had to adjust to having neighbors with different skin colors, languages and religions. The only difference here is that they will feel it in their pocketbooks...don't expect to mess with someones finances without some kind of fight.

We need state and federal governments to step in to help townships deal with the larger burdens of equipment (communication devices can get into 5 figures), aids and special services. Right now it's either up to overburdened townships or flat broke parents to provide such services. As a recent court battle exemplifies, townships are getting desperate and stupid in their quest to deal with the high cost of special education.

So, I don't fault Ralph James Savarese and his son for having a vision of where we should be with disabled rights. As parents of autistic children we have all had to blaze a trail as far as services, treatments and rights. It's good to have a goal nevertheless. See you at the lunch counter where we can stim,type and scream for service...

Braggin'

OK OK, I've been negligent in my posting duties of late. Today, i'm going to take a slightly different tack and just flat out tell you about how Liv and Grace are doing and what we've been working on and with.

Liv- As I posted on AutismWeb a few days ago we had an exciting report from the private speech therapist the other day. During a setup of plastic food Livie whispered "I want food". The therapist wasn't sure she heard it right, but later on in the session she whispered "I want book" and "Where book". Liv's been in summer school aince July, and one of the things they're working on in PECS is adding a second icon to her requesting. "I want" and "cookie" pictures to request a cookie rather than just the "cookie" picture. The school will vocalize it as well when they do it, this just proves that Liv is generalizing what she learns.

Now comes the hard part; getting it to stick. The problem always seems to be consistancy across all areas in her life. This time, we at home have not yet implimented the "I want" and "where" icons. I'm off this week so we should be able to get this stuff in place. We need to especially, since this is the end of smmer school and the week she is off before she starts her CPU (Children's Progress Unlimited in Hazlet, great program) filler between summer school and fall.

On to Grace...Gracie continues to charm, astound, amaze and exasperate us. Echolalia is probably her main issue. It's always strange having one you're looking to get ANY word out of and another that you get upset when she rattles off a dozen words (exact dialog from a Dora episode). She also has some trouble transitioning, but we're relying on our CPU connection once again for that as well. Other than that, my littlest girl is moving in the right direction, and we are looking for great things over the coming months.

My girls have made some gains over the summer, which is much more than we can ask for. Had we relied on the township, there would have been several gaps in their summer programs, and I'm not sure without the fillers and the private therapies, if we would have have regressions rather than PROgressions.