Forgive me for hijacking my regular posts to answer someone who has gravely misunderstood me. I have endeavored in the past few days to raise awareness on legislation before the US Congress to require insurance companies to cover various therapies normally in use for autistic children. It happens to be something that is very important to me and my family; since occupational and speech therapies for my two daughters runs into the thousands of dollars every year. I have been on a couple of blogs on Autism Hub to discuss and debate the issues and points of conflict with the use of therapies, particularly ABA. Which brings me to Ed.
I posted comments on his blog to discuss the particulars of my position and it appears to have gotten out of hand and I am now banned from further discussion. Hence, the reason for my post. I just wanted to say that, if my comments offended you, I am sorry. My desire to understand and empathize with those living on the spectrum is not only genuine, it is a matter of necessity, since I am, by proxy, responsible for trying to understand the needs of two young children on the spectrum.
I'd really like to go point by point why I feel you have gotten me all wrong, but I'd rather just say, metaphorically speaking of course, I love you man. I have to love you because you represent a possible future of my daughters; albeit a radical one, but one where they will be self determined.
I will not be seeking any further dialog, unless initiated by you...I wish you well...
Saturday, July 11, 2009
Monday, July 06, 2009
Compounding the Problem
As previously mentioned, we've been battling a Decepticon called Streptococcus, which invaded my daughter Livie almost two weeks ago, then finally showed it's true form in me over the weekend. On top of that, one of his little minions, Otitis Media, tried to further transform my weekend by taking residence in my youngest, Gracie. All three of us are now under the care of the anti-bot Augmenton. Unfortunately, Livie's mind is being controlled by this transformer, to the point where cannot rely on a frontal assault and we are going to have to attack from the rear. (Sorry, for those without preteen boys or not into mindless action films or complicated plastic toys HERE is a little background to the analogy).
Reality is that Livie's more than week long ordeal with the strep throat has left her very punchy as to what gets passed her gullet. She is thankfully eating and drinking now, but has taken great pains to not letting anything that does not meet her strict criteria of delicious passed her mouth. Unfortunately, this includes all the great thing she needs, like ibuprofen and most of all, antibiotics. She had been doing pretty good over Friday and Saturday taking the antibiotic twice daily; then on Sunday, she began to hold the medicine in her mouth. We used every sleeve to find tricks to get her to take it: hide it in applesauce; hide it in liquid; use an upcoming meal as a carrot to get her to take it. We tried one more time on Sunday night and finally gave up.
You really cannot get anyone to swallow something if they don't want to, so you have to find another route. I'm very surprised that more doctors don't know about the idea of compounding pharmacies. Our doctor here in Monmouth County is interested in getting information about the closest compounding pharmacies in the area. Apparently autism isn't the only area where oral medications are refused! A compounding pharmacy can put many prescriptions into a suppository form. Of course, as per usual, this comes at a cost; and of course, there is no 'insurance code' to get the cost reimbursed. Just another one of those pain in the aspirations to get insurance to recognize and cover real medical needs.
Back to work today and reflecting on a semi-hectic holiday weekend. I did get in some fun (defined as prolonged periods of staring at cooking food on the grill whilst holding a 6 or 12 stringed instrument or adult beverage). But just like the adage that it ain't a party 'till something gets broken; it never seems like a holiday unless we are scrambling to a doctor, pharmacy or drug store...
Reality is that Livie's more than week long ordeal with the strep throat has left her very punchy as to what gets passed her gullet. She is thankfully eating and drinking now, but has taken great pains to not letting anything that does not meet her strict criteria of delicious passed her mouth. Unfortunately, this includes all the great thing she needs, like ibuprofen and most of all, antibiotics. She had been doing pretty good over Friday and Saturday taking the antibiotic twice daily; then on Sunday, she began to hold the medicine in her mouth. We used every sleeve to find tricks to get her to take it: hide it in applesauce; hide it in liquid; use an upcoming meal as a carrot to get her to take it. We tried one more time on Sunday night and finally gave up.
You really cannot get anyone to swallow something if they don't want to, so you have to find another route. I'm very surprised that more doctors don't know about the idea of compounding pharmacies. Our doctor here in Monmouth County is interested in getting information about the closest compounding pharmacies in the area. Apparently autism isn't the only area where oral medications are refused! A compounding pharmacy can put many prescriptions into a suppository form. Of course, as per usual, this comes at a cost; and of course, there is no 'insurance code' to get the cost reimbursed. Just another one of those pain in the aspirations to get insurance to recognize and cover real medical needs.
Back to work today and reflecting on a semi-hectic holiday weekend. I did get in some fun (defined as prolonged periods of staring at cooking food on the grill whilst holding a 6 or 12 stringed instrument or adult beverage). But just like the adage that it ain't a party 'till something gets broken; it never seems like a holiday unless we are scrambling to a doctor, pharmacy or drug store...
Thursday, July 02, 2009
The Human Petrie Dish
Ah, back onto medical issues...
We are feeling horrible today because Livie has most likely been living with strep throat for the past week. It started last Thursday when Livie had a fever, rash, mucous on the back of her throat and a coating on her tongue. All these are classic symptoms for strep and Linda wanted to set up an appointment with the doctor. "Bill, can you take off or even a half day today?" She said with almost desperation in her voice. I had a two day training class that, practically could have been missed, but politically would have been career suicide to miss. Linda, talked to the doctors office and found out there was going to be an intern as well as the doctor. Perfect, another set of hands. She took Jason just to stave off WWIII at our house if we left the three fates alone together.
I guess I should explain, like most of us, Livie does NOT like to get throat cultures. Unlike us, she takes a throat culture and an imminent death threat, and she needs to be restrained. Linda, Liv and Jason set up in the examination room and the intern steps in. First mistake...Livie gives her a sideways glance to say "I don't know you, you don't know me...prepare to be thwarted". Livie was tentative but cooperative toward the intern. Then her normal doctor came in and Liv did her babble she reserves for people she knows. More standard business then, the moment they've all been waiting for, the SWAB. You really need 4 people for the swab: one for the legs; one for the torso/hands; one for the head and mouth, one for the deed. The intern turned out to be too tentative for the task, she did not seem comfortable restraining a child, Liv saw right through th weakness and to0ok advantage. By the time they were finished, Jason had jumped in on the legs and Linda had the torso, arms AND mouth. It was not a good scene.
The test came back negative, and we were left with the prospect of a viral infection. Livie was not swallowing much and was frequently pooling her saliva because of her supposed throat pain. This continued through the weekend and into the next week. We were under the impression that she was working off of a fear of still having a sore throat. Then came my part in this play.
I was just not feeling well on Wednesday afternoon at work. I came home that night to discover I had a fever, body aches and a sore throat. I had come down with this virus. Thursday, I called in sick and Linda saw my sickness as an alternative to bringing Livie in to the torture table again. I went to the local emergency care and got myself swabbed. “You got kids?” the doctor asked. “Yea, lots of them.” I said. “Well, one of them has given you strep.” He says.
Oh boy…that poor girl has been fighting a strep for more than a week. We took her right away to the doctor, and I filled in the anchor of holding her torso and hands and we had a much easier time getting a sample, and of course, if came back positive. Now the biggest problem is going to be getting her to take the medicine, we may wind up having to have it compounded into a suppository. Oh JOY, that will be an adventure…
We are feeling horrible today because Livie has most likely been living with strep throat for the past week. It started last Thursday when Livie had a fever, rash, mucous on the back of her throat and a coating on her tongue. All these are classic symptoms for strep and Linda wanted to set up an appointment with the doctor. "Bill, can you take off or even a half day today?" She said with almost desperation in her voice. I had a two day training class that, practically could have been missed, but politically would have been career suicide to miss. Linda, talked to the doctors office and found out there was going to be an intern as well as the doctor. Perfect, another set of hands. She took Jason just to stave off WWIII at our house if we left the three fates alone together.
I guess I should explain, like most of us, Livie does NOT like to get throat cultures. Unlike us, she takes a throat culture and an imminent death threat, and she needs to be restrained. Linda, Liv and Jason set up in the examination room and the intern steps in. First mistake...Livie gives her a sideways glance to say "I don't know you, you don't know me...prepare to be thwarted". Livie was tentative but cooperative toward the intern. Then her normal doctor came in and Liv did her babble she reserves for people she knows. More standard business then, the moment they've all been waiting for, the SWAB. You really need 4 people for the swab: one for the legs; one for the torso/hands; one for the head and mouth, one for the deed. The intern turned out to be too tentative for the task, she did not seem comfortable restraining a child, Liv saw right through th weakness and to0ok advantage. By the time they were finished, Jason had jumped in on the legs and Linda had the torso, arms AND mouth. It was not a good scene.
The test came back negative, and we were left with the prospect of a viral infection. Livie was not swallowing much and was frequently pooling her saliva because of her supposed throat pain. This continued through the weekend and into the next week. We were under the impression that she was working off of a fear of still having a sore throat. Then came my part in this play.
I was just not feeling well on Wednesday afternoon at work. I came home that night to discover I had a fever, body aches and a sore throat. I had come down with this virus. Thursday, I called in sick and Linda saw my sickness as an alternative to bringing Livie in to the torture table again. I went to the local emergency care and got myself swabbed. “You got kids?” the doctor asked. “Yea, lots of them.” I said. “Well, one of them has given you strep.” He says.
Oh boy…that poor girl has been fighting a strep for more than a week. We took her right away to the doctor, and I filled in the anchor of holding her torso and hands and we had a much easier time getting a sample, and of course, if came back positive. Now the biggest problem is going to be getting her to take the medicine, we may wind up having to have it compounded into a suppository. Oh JOY, that will be an adventure…
Saturday, June 27, 2009
Outfitting an Army (W update)
Our family is scheduled to go to a very special event next week, specifically one of my nephews is go to be bar mitzvah-ed, or more properly said, going to become a bar mitzvah. In either the vernacular or the proper however, it is a BIG deal. So, being a family member of the guest of honor, we have to make sure we are dressed to the nines (where'd they get that phrase anyway?) . Problem is, our family is usually dressed to the two's, we might hit the fours or fives on occasion; but nines require us to get out there and spend some real numbers in time and money.
First let me get through the logistics of the day. We opted out of having neither the girls nor the congregation nor ourselves endure the girls endure the ceremony. So we just have ourselves and the three kids (hopefully all three). My mother in law will watch them while we are there, that is, she'll watch them if her back is able. She has been having relapses of an old back issue, and with Livie being, shall we say, physically difficult of late, we are scouring the area without much luck, for someone to ride shotgun in the house while we go. Right now, it looks like we're going to have to at least do something about the party afterwards. We'll probably leave Gracie home and take Livie.
Okay, we know HOW we're going to do it, but now the inevitable question...WHAT TO WEAR? I'm the only one in the family who remotely has any level of dress up stuff, but even though I work in an office, we are 5 years into a daily dress down policy. I hardly think my 'Autism Awareness' golf shirt and khakis are gonna work in this situation. The 3 older kids, forget it. We need to go to the store if we need a white shirt for a choral concert. Livie and Grace my have a decent outfit or two. Linda's last nice outfit was the wrong season. So we have a 6 alarm fire that need to be put out.
I am first. Since life has not only seen me accumulate experience and battle scars, but also has physically accumulated on me, I can no longer count on major retailers putting on major sales to have sizes in my 'major' category. I love all those euphemisms for large: Plus size; the oldie but goody 'husky'; portly; women's sizes; big and tall, I'm sure if I actually went into stores, I could find a dozen more. My latest encounter was at Men's Wearhouse where I was declared an 'executive' size. Yup, I'm moving both up AND out in this world. What if I get any bigger? Am I then a VIP size; a presidential size...I guess they'll just stick with good ole' King size. Good experience from that place, from suit to tailor to shirt to tie....I'm set.
While Dillan's height has gone up, it's all just more beans on the pole; he has gotten use out of his last suit for three times counting this event. His 'difference' is in his shoe size. He's pretty much starting out in men's sizes, yet his feet are what they call narrow. He flopped out of the dress shoes we got off the internet, and we had to search out narrow sizes on Amazon. I honestly don't know how they did it before the internet. I guess that's one of the reasons society shunned those who were 'different', and maybe part of the reason society's getting wider, since strange sizes are now a click away. Heck, if I were a parent back in the 70's and I knew I couldn't find sizes for my kid, I would have stopped feeding them until they were back 'in range'.
I am first. Since life has not only seen me accumulate experience and battle scars, but also has physically accumulated on me, I can no longer count on major retailers putting on major sales to have sizes in my 'major' category. I love all those euphemisms for large: Plus size; the oldie but goody 'husky'; portly; women's sizes; big and tall, I'm sure if I actually went into stores, I could find a dozen more. My latest encounter was at Men's Wearhouse where I was declared an 'executive' size. Yup, I'm moving both up AND out in this world. What if I get any bigger? Am I then a VIP size; a presidential size...I guess they'll just stick with good ole' King size. Good experience from that place, from suit to tailor to shirt to tie....I'm set.
While Dillan's height has gone up, it's all just more beans on the pole; he has gotten use out of his last suit for three times counting this event. His 'difference' is in his shoe size. He's pretty much starting out in men's sizes, yet his feet are what they call narrow. He flopped out of the dress shoes we got off the internet, and we had to search out narrow sizes on Amazon. I honestly don't know how they did it before the internet. I guess that's one of the reasons society shunned those who were 'different', and maybe part of the reason society's getting wider, since strange sizes are now a click away. Heck, if I were a parent back in the 70's and I knew I couldn't find sizes for my kid, I would have stopped feeding them until they were back 'in range'.
Jason had proved even more a challenge. One suit we bought wound up being tight around the waist and we finally scoured all over the real and virtual earth to find something that A) fit; B) He liked and C) did not clash with Dillan's suit. By clash I'm sure you realize that means 'is NOT the same'. If you talked to them, being dressed at all similar would mean the equivalent to a personal Armageddon.
The 'other' two girls, Linda and Aly took to the malls over the weekend to finalize their ensembles. All I can say is THANK GOD I did not have to sit through that. I used to go out with Linda to the mall when she went out clothes shopping. Note the phrase 'USED TO'. No offense, but you women shop differently than men. It's true, and it's been 'scientifically' validated. Men hunt. Me lookum for 'XX '. Me kill (buy) 'XX'. Me go back to cave. Women 'gather'. They stroll the 'fields' looking for berries (bargins). Result: more berries than we can eat and WAYYYY too much time spent looking for the most ripe ones. Alright, men do miss lots of plump berries carrying their kill out, but that's the price of being king.
Okay, Saturday will tell whether we can pull it all off. We have 6 new outfits (well 5, with Dillan having a new shirt and tie). The next challenge is whether these nice outfits can survive 8 hours of our family. My bet is that at least one casualty; maybe one 'death' and one that will require major surgery. Mazel tov, Alex...
Update:
We made it to the Bar Mitvah, well most of us...
Livie was sick this week with some kind of weird virus and she seemed to have a sore throat and she's been very clingy. So Linda wound up staying home with Livie. The 3 older kids had a bang up time at the party...to the point that they were requesting when the NEXT bat mitzvah party was. When I told them that there was no prospect of a bar mitzvah in our immediate family for more than a dozen years; the idea of conversion to Judaism seemed a viable solution to them.
We were heading home and we got a call in the car from homebase, requesting supplies from the local Stop and Shop. With the four of us fully dressed, and a supply of fun stuff from the party (goofy hats, glow stick chains, sunglasses etc) I saw an opportunity for fun.
I had the boys put on their jackets and sunglasses from the party, and with my jacket on and aly in her fancy dress; we went into Stop and Shop as an entourage. Jason and Dillan had fun playing Secret Service agents; checking aisles for dangerous characters and potential explosive devices. We had the checkout clerks in stitches as they saw Joliet Jake and Elwood Blues go by. The way I figured it, when was the NEXT time we would have the chance to have fun in full regalia? Halloween?
Thursday, June 25, 2009
Middletown in Monmouth/ IMPACT OASIS Pull it Together
I know it's probably small news in the whole scheme of the autism world, but I'd just like to give a big fat kudos to the state of NJ, the township of Middletown and most of all, to those innovative and hardworking group of people in the town who go by the name of IMPACT OASIS for pulling off the purchase of a 26 acre tract of land that will benefit the community in so many positive ways. For the town, they provide much needed open space. As an added bonus, they secure a place for autistics transitioning into adulthood to gain a sense of independence by providing a place to work, live and contribute.
17 acres will still be preserved as open space, but the remaining 9 will be used as farmland to create a working farm and community with autistic young adults at its center. IMPACT OASIS has been working on this deal seemingly ever since I moved down to Monmouth County, I am proud to say that they have realized their dream.
What's almost as impressive is the deal they struck. they had $900,000 of their own money; there was $250,000 from NJ/NY Baykeeper $200,000 from Monmouth Conservation Foundation and a stunning $1.55 million from the township. A bargain for all involved! Thanks IMPACT OASIS for following your dreams and making it a reality. Read more from our local paper, this is a program that I hope could be duplicated throughout the country.
17 acres will still be preserved as open space, but the remaining 9 will be used as farmland to create a working farm and community with autistic young adults at its center. IMPACT OASIS has been working on this deal seemingly ever since I moved down to Monmouth County, I am proud to say that they have realized their dream.
What's almost as impressive is the deal they struck. they had $900,000 of their own money; there was $250,000 from NJ/NY Baykeeper $200,000 from Monmouth Conservation Foundation and a stunning $1.55 million from the township. A bargain for all involved! Thanks IMPACT OASIS for following your dreams and making it a reality. Read more from our local paper, this is a program that I hope could be duplicated throughout the country.
Tuesday, June 09, 2009
A Highpathetical
This is a hypothetical conversation in a hypothetical speech therapy office between a hypothetical mom of an autistic 7 year old girl and a hypothetical grandma of an autistic 5 year old girl:
Grandma: I'm just not sure why she's waking up in the middle of the night. We checked to see if she's had a fever, she doesn't have any tooth problems, upset stomach, she certainly can be having any bad dreams.
Mom: Why can't she be having bad dreams?
Grandma: She doesn't dream, our doctor says she doesn't dream.
Mom: Of course she can dream, she just can tell you what the dream was about.
Grandma: Well, that's not what the DOCTOR says.
Mom: I mean, she could have been dreaming about her mommy leaving or something.
Grandma: Oh she doesn't care whether mommy there or not, really she's only living in the present, she hardly reacts when my daughter comes home.
Mom: It's not that she doesn't miss your daughter, most often, autistic children will just not be able to express it; they often have a very difficult time with communicating emotions and the 'outside' world has trouble reading the signs when they are trying to communicate emotion. You know they do a lot of work on things related to the kids having trouble requesting things that are not visually present. I have no idea of her progress on the ABLLS or what's in her IEP, but it's something that you might want to look into.
Grandma: Oh, I don't know, it's just all so complicated...sometimes I just wish they'd just stop pushing her and give her what she wants. It's like...when she wants to go out a door, she stands in front of it and cries...and they FORCE her to sign to go out, and she can cry for 5 or 10 minutes before she does it...it's terrible!
Mom: They're just trying to get her to use language, if they continually give in and let her out when she cries, she learns that if she cries, she gets what she wants. This way, she learns to communicate the things she wants.
Grandma: Here comes my girl, I'll see you next week.
Off Grandma walks, with her Autism Speaks T Shirt, and a child who desperately needs to be understood.
Now...I am certainly glad this is a hypothetical situation and that I had no real-life basis for this conversation. While, I could half-expect this coming from someone who does not live within the rainbow of the spectrum; it disturbs me that this conversation, might an most likely does occur all across the US and the world every day. Folks... in short, I think we are not doing a good enough job conveying the needs, desires and capabilities of those on the spectrum, ESPECIALLY, those who are unfortunate enough to not be able to express themselves well, or not at all (in the conventional sense anyway). I'm not sure we are going to be able to change the minds of those outside of our comparatively little circle if we can't change the hearts and minds of those within it.
Please try and convey to all those you touch that, while autism may appear to be a shell, there is a living, breathing, THINKING, emoting and deserving human being on the other side of that diagnosis...limited only by their abilities, desires, ambitions and perseverance...and yours.
Saturday, May 30, 2009
A Connecticut Library's in Queen Livie's Court
The original title of this post was supposed to be Grand Central Station because life just seems so busy. The culmination of that week's madness was our journey on the Friday before last. It's been several weeks since then and the roller coaster effect has somewhat worn off, but the memory lingers.
To start back even further, several months ago we received word that something Livie did for her art class was chosen for some kind of international kids' art exhibit. "Great, we said, what does it look like?" we asked. "Sorry, but it went on tour to Washington D.C.. Humina humina wha? MY little girl's artwork is hanging somewhere in DC? No friggin' way! This is going to be one of those buy-the-picture-book-for-$100, right? I mean, she's non verbal and she really doesn't like to draw. We'll just let it slide and maybe we'll shell out the cash.
Fast forward another month or so and I get a call from the principal. "Bill, they're going to have an exhibit of the works in Connecticut, and we have an invite for the artist and her family, would you like to go?" Another Ralph Kramden disbelief noise came out of my mouth, but my wife and I agreed to go.
Another flash forward to a few weeks before the show. "Bill?" Linda calls from the other room
"I gotta make that call to confirm that we are going, and we can get pretty much as many tickets as we want, Aly and Jason want to go. Whatdya think?"
"Three kids in a minivan, all the way to CT, whatdya think I think?"
"I'll get tickets for them too." she says...more than 20 years married, you'd think she'd get my meaning from my tone of voice by now.
One more time tick to the week of the show. Linda is flat on her back with some virus. "If this last until tomorrow, I definitely won't be able to go." "Come on," I pleaded "the vomiting isn't that bad, you don't HAVE to sit up in the car." I really didn't want her to miss this show, it had NOTHING to do with the abject fear of being stuck in the minivan with three kids for more than 3 hours.
The day arrives, the morning leaves no doubt that I am on my own on this journey. Alright, lemonade it is, make mine a double, make the best of it. Google map clocked it at 1 hour 50 minutes, pre party starts at 5:30, presentations begin at 6:30. We'll leave at 3:30, have 10 minutes for some minor traffic, heck, worst case scenario and we hit an hour's worth of backups, we'll get there 10 minutes before the ceremony.
First hour on the road goes off without a hitch, we hit the approach to the bridge (for those who know the NY/NJ tri-state area, you are already hearing the ominous music)...traffic stops. The sign up ahead flashes (delays: 35 minutes across GWB upper level). Shoot, I forgot the sugar in the lemonade. Aah well, we're still 45 ahead of schedule for the ceremony, what more could go wrong? (Again, you tri-state area folks are closing your eyes and shaking your heads) What could go wrong...on the George Washington Bridge? To the Cross Bronx Expressway? To Route 95? On a Friday afternoon? No...speed...above...25...miles..an..hour...
Anybody who has had the pleasure of being on the Cross Bronx can appreciate this next one. My daughter is starting to complain. "Can we get off and find a bathroom?" Aly asks somewhat urgently. " "Aly, look around...this is the land of ONCE ..." pointing to the free advertising written in spray paint on the underpass. "we are NOT getting off on any exit around HERE." 20 minutes later, the urgency has turned to pleading. "PLEEEZE dad? I really have to go!" We're just getting on the 95 turnoff around the Throgs Neck (or was it the Whitestone) Bridge. "Dadddd, pull OVER, I'll pee on the side of the road, I DON'T CARE!" Next exit, I get off and do my best French Connection imitation through the residential section of Pelham Bay. We finally fin a corner with a pizza place; I park next to a fire hydrant and send her in. A minute late, she's back "PAYING CUSTOMERS ONLY..." I have just 2 bucks in my wallet and I throw them at her, Jason goes in with her. 3 minutes later, they come running out. "Dad, take off!" she says somewhat panicked. Already in my Popeye Doyle mode, I execute a wild U turn and head back toward the highway. "DaAAD! the cheapest thing in there was like 2.50! We said we would by something when we got out...we took off after I got out of the bathroom!"
Back on 95...traffic finally begins to break up a little. Maybe, just maybe, we can make it by 6:30. WELCOME TO CONNECTICUT ...ENJOY THE...backup. 8 miles away from the exit; 10 minutes to the library after that...time 6:15. No way we're going to be on time. 6:35...we hit the exit and I switch to my innate sense of direction (no, really...I DO have an innate sense of direction, I did NOT get lost).
We arrive in the parking spot at 6:47; into the library at 6:49. Aly takes Liv to the bathroom, it was a certified MIRACLE that Livie didn't have an accident. I scope the presentation ceremony. About 75 people and a crowd of kids and parents near the front where they are giving out the awards. Kids artwork everywhere, i am not finding Livie's art anywhere, not that i even know what I'm looking for. 6:52, they are out of the bathroom and I push to the front of the crowd. I had just heard the guy with the mike ask "Was there anyone else?" Luckily, another boy had stepped forward and the man was asking him questions while kindly critiquing the piece. I positioned myself in the front and Livie began getting just a slight bit antsy, she brushes some woman who is sitting near the floor and I get a slightly dirty look. Lady, if you knew what I'd just been through and you value EXISTENCE...you won't say a WORD. "Okay, is there anyone else?" the emcee calls out. We step forward and I give them her name and the school name and they pull it up on the screen. "Oh yes, I remember this one,it's the stained glass-type piece..." I blurr a little after this, I remember answering a question and tell the MC after the description that she is non-verbal and 6 and autistic.
We were the last one presented, we MADE IT! I asked them if there was a certificate or something. "You should have gotten one through the school. You can buy a copy for 40$. But this one probably won't translate as well onto the reproduction." After all this, you're damned RIGHT I'm buying a copy!
The theme of the exhibit was "A view from my window" or something like that The idea was to show something that was important to you. Some showed culture, some holiday scenes, family. Livie's art was called "Koosh Ball" and was a stained glass-looking 3-D piece with colored paper inside the 'window'. Now that we 'saw' it on the screen during the presentation, we knew what to look for. We scoured through the dozens of paintings until finally we found it next to the 'title' of the exhibit.
As we stood there admiring it, I got a tap on my shoulder. it was a person from the group who had sponsored our school, VSAarts. They said it really looked best with back lighting, when the light would shine through the colors. It really WAS a beautiful and impressive piece. I was really touched with VSAarts work with the disabled, and proud of my daughter, and I think it showed, because it reflected in their eyes. I thanked them profusely and Me, Livie, Aly and Jason wandered around the show, admiring the other work and hanging out to decompress and eat some of the spread that was left. At 7:25 we left 5 minutes before the exhibit closed for the night. A little over 1/2 hour spent, but we got a month's worth of joy out of the experience. We packed back into the car and drove back to the highway and hit the rest stop on 95 to get some dinner. We had a great time eating MickeyD's and goofing on their play area (or lack thereof). Back on 95 and Aly had fun taking pictures of everyone. The Cross Bronx backed up again near the bridge. We finally got home again just before 10 PM.
the final tally:
Total hours on the road: 5 hours 15 minutes
Total time at the exhibit: 32 minutes
Total dollars spent: 28 dollars, including ice cream, chachkies from the rest stop in CT and the 2 dollars from the pizza place which Aly kept.
Total Joy: Priceless
(glad I finally got that one out)
To start back even further, several months ago we received word that something Livie did for her art class was chosen for some kind of international kids' art exhibit. "Great, we said, what does it look like?" we asked. "Sorry, but it went on tour to Washington D.C.. Humina humina wha? MY little girl's artwork is hanging somewhere in DC? No friggin' way! This is going to be one of those buy-the-picture-book-for-$100, right? I mean, she's non verbal and she really doesn't like to draw. We'll just let it slide and maybe we'll shell out the cash.
Fast forward another month or so and I get a call from the principal. "Bill, they're going to have an exhibit of the works in Connecticut, and we have an invite for the artist and her family, would you like to go?" Another Ralph Kramden disbelief noise came out of my mouth, but my wife and I agreed to go.
Another flash forward to a few weeks before the show. "Bill?" Linda calls from the other room
"I gotta make that call to confirm that we are going, and we can get pretty much as many tickets as we want, Aly and Jason want to go. Whatdya think?"
"Three kids in a minivan, all the way to CT, whatdya think I think?"
"I'll get tickets for them too." she says...more than 20 years married, you'd think she'd get my meaning from my tone of voice by now.
One more time tick to the week of the show. Linda is flat on her back with some virus. "If this last until tomorrow, I definitely won't be able to go." "Come on," I pleaded "the vomiting isn't that bad, you don't HAVE to sit up in the car." I really didn't want her to miss this show, it had NOTHING to do with the abject fear of being stuck in the minivan with three kids for more than 3 hours.
The day arrives, the morning leaves no doubt that I am on my own on this journey. Alright, lemonade it is, make mine a double, make the best of it. Google map clocked it at 1 hour 50 minutes, pre party starts at 5:30, presentations begin at 6:30. We'll leave at 3:30, have 10 minutes for some minor traffic, heck, worst case scenario and we hit an hour's worth of backups, we'll get there 10 minutes before the ceremony.
First hour on the road goes off without a hitch, we hit the approach to the bridge (for those who know the NY/NJ tri-state area, you are already hearing the ominous music)...traffic stops. The sign up ahead flashes (delays: 35 minutes across GWB upper level). Shoot, I forgot the sugar in the lemonade. Aah well, we're still 45 ahead of schedule for the ceremony, what more could go wrong? (Again, you tri-state area folks are closing your eyes and shaking your heads) What could go wrong...on the George Washington Bridge? To the Cross Bronx Expressway? To Route 95? On a Friday afternoon? No...speed...above...25...miles..an..hour...
Anybody who has had the pleasure of being on the Cross Bronx can appreciate this next one. My daughter is starting to complain. "Can we get off and find a bathroom?" Aly asks somewhat urgently. " "Aly, look around...this is the land of ONCE ..." pointing to the free advertising written in spray paint on the underpass. "we are NOT getting off on any exit around HERE." 20 minutes later, the urgency has turned to pleading. "PLEEEZE dad? I really have to go!" We're just getting on the 95 turnoff around the Throgs Neck (or was it the Whitestone) Bridge. "Dadddd, pull OVER, I'll pee on the side of the road, I DON'T CARE!" Next exit, I get off and do my best French Connection imitation through the residential section of Pelham Bay. We finally fin a corner with a pizza place; I park next to a fire hydrant and send her in. A minute late, she's back "PAYING CUSTOMERS ONLY..." I have just 2 bucks in my wallet and I throw them at her, Jason goes in with her. 3 minutes later, they come running out. "Dad, take off!" she says somewhat panicked. Already in my Popeye Doyle mode, I execute a wild U turn and head back toward the highway. "DaAAD! the cheapest thing in there was like 2.50! We said we would by something when we got out...we took off after I got out of the bathroom!"
Back on 95...traffic finally begins to break up a little. Maybe, just maybe, we can make it by 6:30. WELCOME TO CONNECTICUT ...ENJOY THE...backup. 8 miles away from the exit; 10 minutes to the library after that...time 6:15. No way we're going to be on time. 6:35...we hit the exit and I switch to my innate sense of direction (no, really...I DO have an innate sense of direction, I did NOT get lost).
We arrive in the parking spot at 6:47; into the library at 6:49. Aly takes Liv to the bathroom, it was a certified MIRACLE that Livie didn't have an accident. I scope the presentation ceremony. About 75 people and a crowd of kids and parents near the front where they are giving out the awards. Kids artwork everywhere, i am not finding Livie's art anywhere, not that i even know what I'm looking for. 6:52, they are out of the bathroom and I push to the front of the crowd. I had just heard the guy with the mike ask "Was there anyone else?" Luckily, another boy had stepped forward and the man was asking him questions while kindly critiquing the piece. I positioned myself in the front and Livie began getting just a slight bit antsy, she brushes some woman who is sitting near the floor and I get a slightly dirty look. Lady, if you knew what I'd just been through and you value EXISTENCE...you won't say a WORD. "Okay, is there anyone else?" the emcee calls out. We step forward and I give them her name and the school name and they pull it up on the screen. "Oh yes, I remember this one,it's the stained glass-type piece..." I blurr a little after this, I remember answering a question and tell the MC after the description that she is non-verbal and 6 and autistic.
We were the last one presented, we MADE IT! I asked them if there was a certificate or something. "You should have gotten one through the school. You can buy a copy for 40$. But this one probably won't translate as well onto the reproduction." After all this, you're damned RIGHT I'm buying a copy!
The theme of the exhibit was "A view from my window" or something like that The idea was to show something that was important to you. Some showed culture, some holiday scenes, family. Livie's art was called "Koosh Ball" and was a stained glass-looking 3-D piece with colored paper inside the 'window'. Now that we 'saw' it on the screen during the presentation, we knew what to look for. We scoured through the dozens of paintings until finally we found it next to the 'title' of the exhibit.
As we stood there admiring it, I got a tap on my shoulder. it was a person from the group who had sponsored our school, VSAarts. They said it really looked best with back lighting, when the light would shine through the colors. It really WAS a beautiful and impressive piece. I was really touched with VSAarts work with the disabled, and proud of my daughter, and I think it showed, because it reflected in their eyes. I thanked them profusely and Me, Livie, Aly and Jason wandered around the show, admiring the other work and hanging out to decompress and eat some of the spread that was left. At 7:25 we left 5 minutes before the exhibit closed for the night. A little over 1/2 hour spent, but we got a month's worth of joy out of the experience. We packed back into the car and drove back to the highway and hit the rest stop on 95 to get some dinner. We had a great time eating MickeyD's and goofing on their play area (or lack thereof). Back on 95 and Aly had fun taking pictures of everyone. The Cross Bronx backed up again near the bridge. We finally got home again just before 10 PM.
the final tally:
Total hours on the road: 5 hours 15 minutes
Total time at the exhibit: 32 minutes
Total dollars spent: 28 dollars, including ice cream, chachkies from the rest stop in CT and the 2 dollars from the pizza place which Aly kept.
Total Joy: Priceless
(glad I finally got that one out)
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