Thursday, July 30, 2009

Wright On!

Linda and I took a day off today, so to speak, and journeyed to the land of Washington Irving to Mercy College in Dobbs Ferry NY. Of course, days off that don't directly or indirectly involve our kids and/or autism are very rare, today was no exception. We attended an all day conference on Wrightslaw Special Education Law and Advocacy, to all you parents of special needs kids, I would highly highly recommend it. You receive two books and an all day talk with one of the founders of the Wrightslaw website, Peter Wright Esq. (but don't hold the lawyer title bias you, he's really a nice guy). Breakfast, Lunch provided...all for $100 for BOTH of us... how can you go wrong?

If you've never been to the Wrightslaw website and you have special needs kids, time to leave the cave. The resource is truly amazing and Mr Wright was quick to point out that kudos for the incredible information provided should go to his wife Pam. Again, if you have special needs children, I urge you to go there; if you have ever had ANY problems with your local school district, I demand you go there. If you are anywhere within the areas where he is giving this one day course or the two day intensive 'Boot Camp', It's money and time well spent.

I guess in retrospect, it's not that you learn all THAT much from the seminar over what I could have done researching on the site fro 8 hours. It's more the inspiration and the fact that you are forced to think about it all day, not to mention all the great ideas that pop into your head as you listen and review the details of special ed law. We also already had both books (Special Education Law and From Emotion to Advocacy), now I have my own copies!

Wednesday, July 22, 2009

Level 5 in the Game of Life

I had another one of those epiphanniac aneurysms last week. I was putting together a 'big wheel' while giving a piggy pack ride to a child as I was mediating an argument between two others, and I realized that simple tasks are still simple, but new barriers are thrown up to make them more challenging. I sometimes feel like I'm Mario and God's got me up to level 5 and seeing if I can handle the extra Koopa Troopers. The game is still the same, it's just that there a so many fun new obstacles in the way.

Economies of scale last week that I had to put together 3 Big Wheels (two for the girls, one for their school). Fly by night internet company seemed to combine three different genres of Big Wheel styles, so the last one I put together wound up with West Coast Chopper graphics and a pink seat. Luckily, I don't think Livie minds being a biker chick. Anyway, all this assembly is occurring with kids fighting and the girls running around, looking to have fun. Livie is now wholly obsessed with getting piggy back rides from me. I created a sign for 'ride', grasping two hands together and pushing them down. She will climb behind me on the couch and put her arms out in front of my chest and do the sign; this no matter what I am doing (this morning at 4:45 am, since she was wide awake, she decided that a ride should be the first thing I should do in the morning). So in between bolting things together, I am taking breaks by riding her around the house. Gracie also likes to get rides, but Livie turns into the Green-eyed Monster and tries to stop Grace from making the attempt.

Yesterday, I was ambitious enough to tackle the 'sock basket from hell', our laundry basket which we put all our mismatched socks. It hasn't been fully attempted in about 4-6 months, and lately everyone has taken to trying to find a match ad-hoc when they were desperate. The basket was beginning to spill over and it was probably pushed down several times so this thing was packed with probably 2-3 bushels of every sock imaginable. God had fun playing the 'sock room' with me: throwing arguments, bathroom emergencies, dinner and miscellaneous challenges in my path. I did complete the task though after about 5 hours. I am quite proud of the final tally:

Total pairs matched - 209 (PAIRS not socks)

Total unmatched socks leftover- 127

Total permanently orphaned, holy or two small socks thrown out- 25

Miscellaneous winter hats gloves and doll clothes- 17

Do you suppose I can get an additional 'life' for all the 'points' I collected in that world? Of course, my theory of spontaneously generating/mating of household objects held true. After finishing the job and having just socks leftover in the basket, not 10 minutes later, I looked in the basket to find a completely bizarre winter glove on top, black with purple fuzz; those frisky little socks!

Monday, July 20, 2009

Birth of a Blogger

It's always a miraculous event when a virtual person emerges from the womb of message boards out into the 'real' world of blogging. Commenting on message boards is somewhat anonymous and you can become lost in a chorus of people and your words become part of a heap of other personalities. But when you blog, YOU are the sole dictator of what gets said and you set the tone an tempo with what you have to say. You can touch lives without even realizing it, in places you never even heard of, in ways you could not fathom doing in person, and it's all you.

To speak in generalities on blogging, I recently came to a sort of bizarre epiphany. I was thinking about what happens when a person stops posting on their blog. You really have no idea why they stopped: ran out of things to say, lost interest, died. Died is where I came to the interesting dichotomy. I have a passing interest in the macabre hobby of old cemeteries. When you visit a persons grave, you usually have all the vital statistics of a person of exactly when they were born and died, with little but clues as to who they were and how they lived their lives. Conversely, bloggers get into great details sometimes on their view and personal lives, then can disappear into anonymity. Closure is something that rarely seems to happen in the blogosphere.

But I guess the internet and blogging are not going to be a great places for epitaphs for the masses; your virtual life just gets washed over by the flood of information and eventually just gets 'buried' into an archive. A few years ago, after my aunt's passing, I began googling her name and other meaningful things in her life. She had a friend who had predeceased her and I googled his name. I had always known him as loving music, even though he was a dentist. I came across one hit that link sent me into a message board where a person was going into great detail about a coronet (trumpet) he was trying to sell and how it was his dentist's trumpet. He talked about how all the jazz musicians in the 50's in Hackensack NJ would congregate in his dentist's office and play music. He wasn't explicit, but I wonder whether my aunt's friend hung out with people like John Coltrane and Miles Davis (who recorded a record or two in Hackensack). All this is academic now, because the link no longer works, the coronet was either sold or remains in someones attic, and the story is transient and gone from all but some obscure server in some obscure college which probably was erased or archived never to be seen again.

Where was I going with all this? I'm sorry, I was introducing a new blogger to the ether. Her nom de keyboard is Age- a Jersey girl with a lot to say and hopefully won't read into my post as anything but a rant, the impacts of blogging are immediate and far reaching. While the distant future for everyone on the planet is death; what we say and do can have impacts far beyond our own lives. Good luck and make a dent in the real world with your virtual voice.

Saturday, July 11, 2009

Hey Ed...I Love You

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...

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...

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…