Saturday, December 31, 2005

Backup Software

hard driveSo I went on a search for backup software and found NTI Shadow 2. The best part is that it only costs 99 cents (at least until midnight California time, New Year's Eve). So now I am backing up the "My Documents" folder of our computer on Beth's hard drive and the "My Documents" directory of Beth's computer on our hard drive. I am also looking at IBackup as a possible solution. There seems to be a mix of good and bad about it (plus it costs $10 per month). Of course it does give you access to your files from anywhere on the internet which may be a good or bad thing depending on how secure the data is being held.

Wednesday, December 28, 2005

Without bad luck we ....

hard drivewould have no luck at all. The hard drive on our PC decided to have a mechanical failure. This isn't one of those easy to recover from failures but a hardware crash that means the data is lost. What data? Everything. Yes, I know I'm a programmer and should know better than not backing up my data but I didn't so stop nagging. I even had two hard drives in that PC and the one that failed is the one with the irreplaceable data. Michel lost all of her graduate work. We lost all of our emails. This means that if your email address was on our optonline account, we don't know what it is anymore. So tonight I'm going to buy a new hard drive and start the laborious task of reloading all our software onto our PC. And this time I'm going to buy a couple of USB Flash Drives so that we can keep backups of everything we do. Just shoot me.

Saturday, December 24, 2005


Michel goes Xmas shopping.

Michel had an incident last week. We had to have an ambulance come to the house and take her to the hospital. She was feeling very dizzy... so dizzy that she couldn't even walk. We were afraid it was something related to her brain. The doctors did a few tests and decided that it was an inner ear viral infection. The prognosis? She'll be better in a week or three months or anywhere in between. Meanwhile she is walking around trying to keep from toppling over. Her doctor put her out of work for a couple of weeks and I think that upset Michel more than anything else.

The shots to reduce the pain have worked well but now the other side is bothering her more. She starts those shots in a couple of weeks. In the picture you can see she is wearing her neck brace (sorry for the quality... it was my camera phone). The neck brace helps reduce the pain. Everytime we go driving anywhere Michel complains about the pain if the car jerks and she has been throwing up because of the vertigo. I just want her to be better. But this isn't getting better and it may never get better.

Wednesday, December 21, 2005

The Baltimore Excursion

I have been very bad about posting to my blog and I have so much backlog. So let me catch up a little. Back on December 7th we had an appointment to see George Capone, M.D., at Johns Hopkins. He is the Director of the Down Syndrome Clinic and he has been following Mikey since he was a baby. He is also one of the leading experts (if not THE expert) on the dual diagnosis of Down syndrome and Autism. We broke the drive down into two days by staying at Michel's sister's house Tuesday night. She lives right by Trenton so it leaves a drive of about 2-2.5 hours. We got to the clinic early even after taking two rest stops during the drive down. Dr. Capone was thrilled with the way Mikey has improved since our last visit. Mikey was great. He sat on the floor, played games, watched his DVD, signed his needs... it was great especially compared to last time we were down to see Dr. Capone. The medications combined with the ABA have definitely been working. Dr. Capone dcecided that since we have psychiatrist that Mikey is seeing on a regular basis now, that he doesn't have to see us for a year! If we need his advice we can exchange emails with him. meanwhile he gave us some suggestions for further medication changes that should help Mikey even more.

We really are seeing a huge difference with Mikey. He is much more attentive in school. He is actually learning school material and not just "life skills". His new school, AHRC has been great. I dropped him off last week and everyone knew him when he came in. One of his therapists told me that Mikey is her favorite student. He's like the little mayor of AHRC. This is a HUGE improvement over the Rosemary Kennedy School where he was originally going to go. There was an article in the paper about the school's use of "detention rooms" which are little more than dark, padded closets:

BOCES center's discipline comes under fire

Based on Mikey's behavioral issues, there is no doubt that they would have locked him up in there. At AHRC it has been nothing but wonderful.

Monday, November 21, 2005

Killing babies

MikeyWe used to institutionalize babies with Down syndrome. Now we kill them.

An extra chromosome isn't awful by Beverly Beckham. Read it and cry.

Wednesday, November 16, 2005

Mikey sees the dentist

Saturday we went to the dentist to have four of Mikey's baby teeth pulled. Mikey has the same problem that Beth had when she was little... her aadult teeth came in behind her baby teeth and didn't push the baby teeth out. So Michel had gone to the Pediatrician and got a little valium to slow Mikey down before the big day. We gave the valium to Mikey about 30 minutes before the procedure. The valium had exactly zero effect! Mikey was bouncing around in the waiting room like a mad man, laughing and entertaining the staff. We got him into the room and I climbed into the chair first and then I wrapped up Mikey with my arms and legs. He squirmed a bit but I held him. The dentist shot him with some Novacaine and Mikey got loose and bumped the needle. My fault! This time I held him by the elbows instead of the wrists and really got him good. The four teeth were gone even before we knew it. Mikey no longer looks like a shark with multiple rows of teeth. We have two more teeth to remove and then we are all done.

Our pediatric dentist is absolutely wonderful. He came in on his day off to take care of Mikey so that Mikey wouldn't miss any school. We met him when Beth was little. We had taken her to a couple of dentists and she was terrified of them. One dentist told us, "I can't work with your child." We took Beth to see Dr. Charlie and she was crying like crazy when she went in. By the time she was done, he had her laughing and hugging him. He has an incredible way with kids that melts away all their fears and anxieties.

Saturday, November 12, 2005

Tuesday, November 08, 2005

Michel has a procedure

Michel had another medical procedure (the specifics of which will not be mentioned) and everything went great. As usual, as you can see from the picture, Michel was a trooper and went in to face the worst medical science could throw at her with a smile on her face!

Monday, November 07, 2005

Perfect Weather

NovemberNovember has been the perfect month so far. You will recall how miserable October was, but November has been great. The leaves have been turning but they are still mostly in the trees. This is a view from the front of my house looking west down my street.

NeighborsIt's lucky that the weather was so nice this past weekend because the new neighbors moved in. The house across the street has been vacant since January so we have been looking forward to having someone finally live there. They are a young couple, Melanie and Josh, with no children yet. Beth was hoping for a girl in the 8th grade but these things don't always work out. Of course, with any luck this does mean that Beth might find some baby sitting jobs in her future!

LeavesWith such perfect weather, Mikey wanted to go for a drive so we hopped on the Parkway and drove down to Jones Beach. The nice thing about the Parkways on Long island is that they have a lot of trees planted along them. This time of the year it is especially pretty as the trees are changing color.

LandmarkWe drove along Ocean Parkway down by the beach. Amazingly, they are still charging to park your car so we didn't stop which was fine by Mikey. He just likes the drive and to listen to music. I took this picture of the world famous Jones Beach water tower, designed by Robert Moses and built in 1930. Here is a satellite image of the tower. The tower is where the roads intersect. The Jones Beach theater is just to the upper right in the satellite image.

Beth's Birthday

Thursday was Beth's 13th birthday. We now have a teenager around the house. Of course, Beth has been acting like a teenager for about 10 years but that is another story. Our friends over at were nice enough to wish Beth a happy birthday Beth got some DVDs (Degrassi Junior High and the third season of Monk) and a docking station/boom box combo for her iPod.

So now that I have a teenage daughter, the question I have for all those dads out there is how did you survive your daughter's teenage years. The thing is, that coming up rapidly will be a new interest for Beth, B-O-Y-S. And I know about teenage boys. I was one once and the only thing that teenage boys are interested in is teenage girls. So what advice do you have for me? How can I get through the next few years without killing anyone? Or having a stroke? All advice gladly accepted.

Monday, October 24, 2005

But technology is so confusing!

damn software This would be funny if it wasn't so sad.

Quick refresher: You may recall that Rafik Hariri, the Prime Minister of Lebanon was murdered earlier this year and that there were accusations that Syrian officials were involved in the murder.

The UN produced a report on the murder and the report quoted a witness as saying, "the plot to kill Mr Hariri was hatched by unnamed senior Lebanese and Syrian officials." The report, however, was a Microsft Word document and the track changes feature had been left on. The document was distributed Thursday night and it was soon after that the computer gaffe was noticed. The original sentence revealed with the track changes feature named Syrian President al-Assad’s brother, Maher, his brother-in-law, Assef al-Shawkat, and other high-ranking Syrian officials and not "unnamed senior Lebanese and Syrian officials". Oops! I knew that all those menu options were too confusing for the typcial MS Word user.

Hat Tip: Little Green Footballs

Sunday, October 23, 2005

Free Piglet!

Free Me!!The world has gone insane. Piglet has been banned from some council offices in England because he offends Muslims. They don't like pigs.

Councillor Mahbubur Rahman, a practising Muslim, backed the ban. He said: "It’s a tolerance of people’s beliefs."

So what the councillor is saying is that he wants everyone to be tolerant of his beliefs but he has no intention of being tolerant of anyone else's beliefs. In similar news and a further example of Islamic tolerance, eleven Muslim ambassadors have complained and Al Queda has threatened terrorist action because a newspaper in Denmark published a cartoon of Muhammad. Does anyone still doubt that we are at war with islam?

Hat tip: Michelle Malkin

Update: Another example of tolerance: Three dead as Muslims attack Christian Church. Hundreds of muslims in Egypt attack a Christian Church because of DVD that they heard was anti-Islam, although none of them actually saw it.

Further Update: Turns out the DVD is about the mistreatment of Coptic Christians by Muslims in Egypt. The Muslim response? To mistreat Coptic Christians. And so it goes.

Friday, October 21, 2005

Mikey visits the ER

Mikey was mad about something and banged his head the other night opening up a cut in his forehead. There was blood everywhere. The cut was pretty deep and it wouldn't stop bleeding completely so we brought him to the ER to see if he needed stitches. We brought the portable DVD player so Mikey watched the Sponge Bob Movie without any complaints. As it turned out we got quite a crowd of little kids hanging out with us watching the movie. We didn't have to wait too long as the hospital fast-tracked us and we got to see a doctor fairly quickly. The doctor decided to seal it up with glue and steri-strips (Beth didn't believe me that they used a glue stick - "They only do that on Sponge Bob!") which meant that we were out of there by 10 PM. If Mikey had needed stitches he would have had to be knocked out and we would have been there into the middle of the night.

Wednesday, October 19, 2005

Isn't it ironic?

Well, Alanis Morissette might think it is even if it isn't, but it is an amusing coincidence.

Dog Attacks Anti-Dangerous Dog Bill Author

A New Mexico legislator gets a bill passsed that makes dog owners responsible if their dog attacks someone. In fact, the dog owner can be arrested for a felony. So guess what happens... the legislator gets bitten by a dog... his own dog... and ends up in the hospital. No word on how seriously he was injured.

When is a choice not a choice?

The Abortion Debate No One Wants to Have

SANTA MONICA, Calif. -- If it's unacceptable for William Bennett to link abortion even conversationally with a whole class of people (and, of course, it is), why then do we as a society view abortion as justified and unremarkable in the case of another class of people: children with disabilities?

Rest of article...

The author of this article is the mother of a child with Down syndrome. The article discusses an important issue that no one wants to talk about, "At a dinner party not long ago, I was seated next to the director of an Ivy League ethics program. In answer to another guest's question, he said he believes that prospective parents have a moral obligation to undergo prenatal testing and to terminate their pregnancy to avoid bringing forth a child with a disability..."

If pre-natal testing can reveal disabilities, does a parent have the responsibility to get tested and dispose of disabled children? So much for choice. In this view, disabled children are nothing more than a drain on society. The article has some good points but one thing she gets wrong is the idea that she tries to justify not having an abortion by saying that her daughter is smart and is just like other kids. But that is irrelevant. What makes her duaghter's life worth while isn't that she isn't that bad, but rather that she is a human being. All human life is worth preserving and if we get into a discussion of which lives are worth while and which lives should be aborted then we are on the eugenics highway. Next, do we start discussing the IQ cutoff for allowing children to be born? "Sorry, but genetic testing revealed your child's IQ will only be 110 and we need physicists this week."

My son is a wonderful little boy and I love him to pieces even if he drives me crazy sometimes. His life is worth living simply because he is a human being. Yes, he is costing society a lot of money to raise and care for (more money than he will ever return to society) but is that how we measure someone's worth? Is it all about the money? Do we need to dispose of anyone who might be a drain on society? If so, do we stop at the unborn? There are plenty of people in prison who will never pay back to society what they are costing to keep incarcerated. Why do they get to live but an unborn child who never harmed anyone and whose only mistake was being less than perfect must be killed?

Smoke 'em if you got 'em

Over the years, the laws about smoking at the office have drastically changed. When I started my career you could smoke anywhere in the office. Slowly the rules changed so that at first, you could only smoke at your desk if everyone around said it was OK, then it was changed to you could only smoke if you had a private office. This wasn't too bad if your boss was a smoker. Then the rule became that you could only smoke in the special smoking room. Finally, there was no smoking permitted at all. So the smokers would all head outside and stand around the doors to the building. The entries became a wall of smoke and old cigarette butts.

When I started at Symbol, that was basically how things were. But Symbol has a day care center with an outside area so they changed the rule so that you could only smoke outside in the specially built gazebo (picture). This should have been an improvement for the smokers because the gazebo is enclosed so that the smokers don't get rained on. But the smokers were still smoking in other areas. So Symbol put up signs all over the place saying that "Smoking is only permitted in gazebo" but smokers are still smoking in other areas. I am willing to bet that it won't be too long before Symbol does what Computer Associates did and forbid all smoking on Symbol property.

Sometimes it's better to be at the bottom

We got a surprise last week at Symbol. Without any warning, our CIO and one of the VP's reporting to him were let go. As our CEO told us the next day, this was purely a performance issue. It had to do with SOX compliance issues. Apparently one-third of our SOX check points were inadequate (compared to about 3% last year). This is going to cost the company a couple of million to cover. Fortunately, our CEO had been smart enough to put some money on the side "just in case" but he would have preferred to use that money for developing new systems. The end result is that the top guys were told that their services were no longer needed, unlike so many other companies where the "little guy" is blamed for all the failures.

Mikey in the car

I took this picture with my cell phone camera. I wasn't sure how it would come out. It certainly is tiny! Anyway, this is Mikey sitting in the car waiting to go to McDonald's. Mikey loves to go for a ride in the car. I just wish gas wasn't so expensive!

Blogger has a cool feature that allows you to email a picture to your blog and it is automatically posted along with any text you send along. I wanted to test it out to see how it works and it works great. The only problem is that it is hard to type text into a cell phone message. So I cheated and sent the picture and then edited the text from the PC. Much easier!

Friday, October 14, 2005

Rain rain go away

It has been raining for 10 days. It figures that this would happen after I say how much I like October. This has been the rainiest October on record. It was so bad that the roof at work started to leak. Fortunately, the leak was in the men's room so it didn't damage anything. Personally, I have had enough rain for awhile so if the rest of the month is sunny that would be fine.

Monday, October 10, 2005

Death to Smurfs

Black and Blue!!The United Nations has done what many of us have always wanted to do... blow up a village of Smurfs! UNICEF apparently decided that blowing up Smurfs would be a good anit-war message so they asked the family of their creator for permission to blow up a village of the little blue creatures. The result is a 25-second anti-war commercial that shows a village of happy Smurfs being blown up.

Tiny Smurfs scatter and run in vain from the whistling bombs, before being felled by blast waves and fiery explosions.

So the question is, can we convince the UN to blow up the Teletubbies next?

Sunday, October 09, 2005

What does Tom need?

I found a new "fun with Google" game... Type in to Google, "[your name] needs" and find out what it is that you need. Here are some of my favorites:

Tom needs...

  1. a hat (well, I'm not bald yet)
  2. a dog (I have one and one is enough, thank you)
  3. many lines (no, that would be Kate Moss)
  4. to be back in a school setting - amongst his peers (from an autism web site... that is a quite a coincidence)
  5. to get Roger to do most of the talking (Roger who?)
  6. some concealer (And what exactly am I concealing?!)
  7. to find Jesus (but where to look!?)
  8. a swift kick in the face (That's not very nice!)
  9. to be punched and kicked repeatedly (OK, now you are getting carried away!)
  10. to do some CREST commercials and show off his Big Pants (OK, I get the Crest commercial but "Big Pants"?)
  11. people in his life who will tell him that being gay is okay (I'm not gay.... not that there's anything wrong with that!)
  12. a competent wife so badly (Yeah, I'm fed up with this incompetent one)
  13. to start carrying a gun (With all these people wanting to punch and kick me, maybe I'd better!)
  14. to realize he's not a doctor and knows nothing about having a baby (What? I'm not a doctor?)
  15. TO GET HIS HEAD OUT OF HIS BUTT (Now that is true!)

Thursday, October 06, 2005

Wake me up when September ends

Summer has come and passed
The innocent can never last
wake me up when september ends

I love October. October is by far my favorite month. October is the transition from the heat and humidity of summer to the cool weather of autumn. October brings apples that you can pick frsh off the tree. Before things got too crazy around our house we used to drive out to the North Fork and pick apples and stop in at a winery or two. Walking around an orchard and eating apples fresh off the tree is a perfect way to spend a day. (Just watch out for the poison ivy growing around the apple trees.) The so-called Red Delicious from Washington state can't hold a candle to a fresh NY apple.

The last few days have been cool in the morning and in October that often means early morning fog. Three mornings in a row there was fog as I as driving to work. Long Island is a big place, so big that you sometimes forget you are on an island, but you are still never more than 12 miles from the ocean.

Could you give me a lift?

In my last entry, I should have added that I was posting to my blog while I was sitting in the waiting room. How did I get internet access? I searched for an open wireless network and found one that was unencrypted and had internet access. So I piggy-backed on to that network. So the question is, is there anything wrong with doing that? Is it immoral to get into someone's network and use their bandwidth to access the internet? What do you think?

Monday, October 03, 2005


I am sitting in the waiting room of the gastroenterologist listening to Green Day and waiting to go in to see Michel. She had an endoscopy to see if anything was going on in her stomach. She did have a bit of an ulcer but nothing that should have been causing the pain she has been having so we still don't have a diagnosis. Next, the oncologist. Ugh.

Thursday, September 29, 2005

And the children shall lead them

Even if you aren't a football fan, this is a great story.

Weis uses play called by 10-year-old boy dying of cancer


HatTip to Long or Short?

I score a book

buyafriendabook.comApparently Map was so impressed by my getting her a book that she sent me a book in return! The book she sent is the new book by Umberto Eco. Regular readers of my blog will recall that I enjoy reading his books. The new book is The Mysterious Flame of Queen Loana and it looks outstanding. I can hardly wait to start it.

So as you can see the good karma of BAFAB week works! So run out and buy a friend a book just because.

Spam Comments

I got my first spam comment. I deleted it within a minute of its being posted because I get an email to let me know that a comment has been posted. If this continues I will have to turn word verification on.

Update: Got a second one (3:20 PM). I think I must have been noticed.

Update II: Got a bunch more so I turned on word verification. The worst part was that the spamming comments were on my salute to the World Trade Center. Some people just suck.

Back to school night

Sing it!!Last night was the first parent/teacher meetings at Beth's school. It was an opportunity to meet Beth's 8th grade teachers and get an idea of the kind of work that would expected of her for the year. Michel couldn't go because she wasn't feeling well (more on this later) so I went alone. Beth's teachers are all very nice. I think her French teacher wants to adopt her. ;-) The French class is going on a trip to Quebec at the end of the year so she told us a little about that as well. All her classes seemed like a reasonable amount of work. Her english class involves a lot of reading. Beth is expected to read at least 1,000 pages each quarter and write about what she has read. Her science teacher was especially mice. Beth is taking 9th grade science so she has to take the Regents at the end of the year. Her teacher kept telling us not to worry that all his students do very well and he could tell that this class was going to work very hard because he saw a lot of dedication. The science teacher, by the way, looks exactly what a science teacher should look like. He reminds me of those pictures from the Apollo missions showing the scientists at the Houston Space Center huddled around a monitor.

When I got home, Michel told me that she was feeling very ill and wanted to go over to the ER. So we grabbed the kids and drove over. Once Michel was checked in we gave her some money and our new portable DVD player along with some I Love Lucy DVDs and I took the kids home. Michel was released in the middle of the night and she decided to walk home! It's only a 15 minute walk but still... Anyway, her neurosurgeon's office called and he doesn't think it is related to the shunt so the search for the source of the pain continues.

Wednesday, September 28, 2005

A blog of a different color

Yes, you are at the right place. I got tired of the lighthouse/nautical theme and went with something more basic. I'm not sure if I like the color so that may change again but I will leave it this way for now to see if it grows on me.

Beth and her music

Meteora - Linkin Park Fallen - Evanescence American Idiot - Green Day
Linkin Park makes me feel old. My daughter likes them (they are perhaps her favorite group right now) but they sound like nothing more than noise to me. I feel like my father is taking over my mind as I am tempted to tell her to turn off that "crap". In fact, I actually went in her room and turned her music down! (Not that it was particularly loud but I could hear it.) I think Beth actually likes that I don't like her music. She's just a few weeks away from being a teenager and she needs some independence... something that is hers and not her parents.

In general, Beth has wonderful taste in music. Her favorite groups are The Ramones and The Clash, two groups that Michel and I both love. We watched a TV program on the old punk rock scene and Beth was fascinated by the punk groups like The Dead Kennedys and Black Flag. So even though Beth is OK with liking the music we like, she doesn't want us to like the music she likes... if that makes any sense.

The group Evanescence is a group that Beth and I both enjoy although she doesn't mind that I like them. The lead singer, Amy Lee, has a very nice voice and the music is well done. The group learned the lesson of Nirvana and goes for the slow start, fast and loud finish.

Green Day, though, is a group that I really like but that Beth doesn't want me to like. What I like about them is that they are more like the old punk groups only with more musical talent. ;-) Their songs are political, reminding me of songs like "Bonzo Goes To Bitburg" by The Ramones or "Holiday in Cambodia" by The Dead Kennedys. "Holiday" is a solid punk rock song about the evils of the Bush administration. Even if you are a GWB fan, punk is supposed to be anti-government so that is irrelevant.

The best part of this is that Beth is truly developing her own style. Her musical taste is her own and is not simply a rehash of whatever her friends like. Beth is definitely her own unique individual with her own likes and dislikes and is not just a member of the crowd. She makes me proud.

Update I: Beth read this and agreed with the statement, "I think Beth actually likes that I don't like her music. She's just a few weeks away from being a teenager and she needs some independence... something that is hers and not her parents."

Update II: Beth reminded me that "Know Your Rights" by The Clash is another good example of a political song.

Buy a friend a book

buyafriendabook.comThe lovely and talented Debra Hamel, author of Trying Neaira, has been promoting BAFAB, Buy A Friend A Book Week. Next week is the second BAFAB week so you still have time to participate. BAFAB is simple... buy a friend a book for no good reason other than that they are your friend. You can read more about it on Debra's BAFAB web site. I bought a copy of Assassination Vacation by Sarah Vowell for a friend in San Francisco. I hope Map enjoys the book!

Update: if you blog about BAFAB week, you could win 4 books!

Monday, September 19, 2005

Avast, me hearties!

Sing it!!
It's International Talk Like a Pirate Day today so get out there and talk like a pirate. So, all ye land lubbers, hop smartly and start talking like a pirate unless you're a no good bilge rat. Arghhhh.

Thursday, September 15, 2005

Music Therapy

Sing it!!If you recall, Mikey was in Newsday back in May because of his involvement with music therapy. The music therapist who works with Mikey is John Carpente who started The Rebecca Center for Music Therapy at Molloy College. John is currently attending Temple University for his PhD. John's thesis is about Mikey and he has posted it on the web. I thought you may be interested in reading about Mikey and about the many benefits that music therapy has provided to Mikey. Creative Music Therapy with a Boy with Multiple Impairments: Stepping out of isolation into new experiences.

Thursday, September 08, 2005

Back to school

Yesterday was the first day of school for Beth and Mikey. Beth only had a half day. Today is her first full day of school. Apparently her first day was a great day. Turns out that her friend is riding on the bus with her. Last year the friend's mom drove her to school every day but this year the friend is on the bus. The school did make a mistake in her schedule. Beth was supposed to be in 9th grade science (Earth Science) but they had her in 8th grade science. We spoke to the guidance counselor and everything should be OK now.

Mikey's first day was a full day. Because we changed his school so late, the bus wasn't settled so Michel had to drive Mikey to school. She said that Mikey went right off to his class without any complaint. He had a great day in school and his teacher said that he was right on target. He sat and observed everyone and didn't have any issues or problems during the day. I think that this school is the absolutely right choice for Mikey.

Friday, September 02, 2005

The prince returns

Mikey came home on the bus Sunday without any problems. He had attached himself to his counselor and stuck with him like glue. We had a copy of the schedule and it looked like fun. A lot of running around, playing in the pool, and other phsyical activites. Mikey loves running around and playing so this was perfect for him. Plus after 12 hours of running around, he was ready to sleep at night. Michel only called the camp three times to check on him. I spoke to the man who runs the program and he told me that Mikey did great and next year they look forward to having him for two weeks!

Mikey came home to his new big boy bed and his first night home he jumped in and went to sleep without any trouble at all. We did put a gate at his door because we are afraid he might wander off if he woke up in the middle of the night.

So everyone survived camp week and we are getting ready for school. Michel went to the CSE meeting the other day and everyone agreed that Mikey should go to AHRC. Now we are all set for a great year.

Thursday, September 01, 2005

New Orleans

Support the Red Cross in their efforts to support the victims.

Time to eat

We got a call the day after we dropped Mikey off at camp. He wouldn't sit at the table in the cafeteria to eat. He ran off to the corner and sat there away from everyone else. They wanted to know if it was OK to let him sit in the corner by himself. We thought this might happen because Mikey gets nervous around crowds so we told them it was not a problem. In an earlier post I mentioned Mikey's anxiety issues and crowds are an issue with Mikey. Of course, it is possible that Mikey was aware of what happened to Wild Bill Hickok when he didn't sit with his back to the corner.

They told us that Mikey was adjusting very well otherwise. He slept in a regular bed although the counselor did push his bed up against Mikey's bed because Mikey wouldn't stay put and it did take Mikey awhile to fall asleep. Mikey has been sleeping in a crib at home because we were worried about him not staying in bed and wandering off. With the adjustment to a bed at camp, we thought this would be a good opportunity to get Mikey a bed. So Mikey will have a surprise when he gets home.

Wednesday, August 31, 2005

Work notes

In case you were following along with my posts about using SAP Portal you will be sad to hear that there won't be any more updates. Because of the cost of development, the project has been cancelled (at least for now) and we are going to continue to support the existing system (standard servlet/JSP application). I can't say this is a bad thing because I wasn't convinced that the SAP Portal solution was a good direction in the long run. There had been a lot of thought about using it for internal applications in the intranet but there never seemed to be a good analysis to determine if this was a good direction for our external web site. It was more like, "We are going SAP for our applications so we are using SAP Portals no matter what." Anyway, with the cancellation the floodgates have opened with all the projects that were put on hold because "that would be added to the SAP Portal version." So we have lots of work to do and some of it looks like fun development.

Mikey goes to camp

It has been too long since I updated! Bad Tom!

OK, rather than discuss everything in one blog entry I will break things up. Last Tuesday (August 23rd) we brought Mikey to AHRC in Old Brookville to take the bus to Camp Loyaltown in Hunter, NY. This is about a three hour ride. Although Michel had doubts that we would get Mikey on the bus, I was optimistic. When we got to AHRC, there were just too many people around and Mikey was just too frightened to get on the bus. I tried to carry him on but he was struggling and crying. So Michel turned out to be right and we had to drive him up to camp. We did get to meet Mikey's counselor (each camper has their own counselor) so that was nice. He is from Ireland and travels around the world doing things like being a camp counselor for disabled children.

We dropped Beth off at the grandparents' in Brooklyn and drove up to Hunter. Mikey loves the car so he just sat back and enjoyed the ride. I was worried that we wouldn't be able to get away once we got up there, but everything turned out fine. Mikey saw the pool and that was it. We handed Mikey to the counselor, dropped his bags off, and said goodbye. No tears from Mikey at all.

The one good thing about driving Mikey up was that we got a chance to see the camp. It is very nice. They have a big pool and a playground right by Mikey's cabin. The counselors sleep in the cabin with the kids and the doors are alarmed so that if someone tries to walk out, everyone is alerted. There is a counselor awake during the night to keep an eye on things. As one of the administrators of the camp told us, "Camp Lose-A-Kid" probably wouldn't be very popular so they make sure that all the campers are safe at all times. Mikey's trip lasts from Tuesday thru Sunday so this gives us all a little break.

Saturday, August 13, 2005

A Quote

"The human heart was not meant to beat outside the human body and yet, each child represented just that--a parent's heart bared, beating forever outside its chest."

-Debra Ginsberg, Raising Blaze...Bringing Up an Extraordinary Son in and Ordinary World

Thursday, August 11, 2005

Mikey Update

Mikey has been attending the Rosemary Kennedy School for the summer. We had hoped he would be able to stay in Plainview for the summer but that didn't happen. As it turned out, it was a good thing that he went to RKS because we found out how much we hate it. A couple of weeks into the program, Michel discovered that Mikey was not getting the number of speech, physical, and occupational therapy sessions that are in his IEP. When she spoke to the principal, the response was that they can't be expected to provide the full compliment of services in the summer because of staffing problems and that this problem has been going on for 28 years. Of course, no mention was ever made of this to us when we were looking for a school. Most importantly, providing the services in the IEP is not optional. RKS must provide the services as defined in Mikey's IEP. We also found out that the computer in Mikey's classroom was broken and that the teacher who fixes them is out for the summer. Working on the computer is something Mikey really enjoys and it is a great learning tool for him. When Michel called the principal about the computer she was told there was nothing that could be done. Michel called the office of our state senator Carl Marcellino and amazingly there was a brand new computer in Mikey's classroom the next day.

All of this convinced us that RKS was not the place for Mikey and Michel started looking for another school. First, we went to look at The Center for Developmental Disabilities in Woodbury. It was a very nice school... very quiet and not far from home. The kids seemed very well behaved and on target. After seeing Mikey they told us that he wasn't right for their school. This made me wonder because it seemed that since Mikey could be mainstreamed if his behavior was better, why does this school even exist? It seems to me that most of the kids at The Center could be integrated in regular classrooms if they can sit and attend and follow directions.

With The Center out of the running, Michel went to look at AHRC's school and she liked it. The school isn't straight ABA but Michel thought it would be a good fit and the teachers at AHRC thought Mikey would do very well there. They are more academic oriented than RKS so we look forward to Mikey learning to read. Now it is just a matter of talking to our school district and getting Mikey's IEP updated which should not be a problem. Michel and I are both very happy that Mikey will not be at RKS much longer.

AHRC runs a summer camp called Camp Loyaltown in Hunter, NY and Mikey will be going there in two weeks. This is a sleep away camp and Mikey will be gone for 5 days. Since we have the medicaid waver this is being paid for by the state. It is going to be very strange not having Mikey around. We still don't know what we are going to do with ourselves.

I should add that Mikey fell at RKS and got three stiches in his chin. His teacher tried to grab him but he wriggled out of her grasp and banged his chin into a bookshelf. They had to sedate him in the ER to get the stiches in and we were able to remove them at home while Mikey was asleep. It is healing very nicely.

References: Rosemary Kennedy. Ms. Kennedy (the sister of Ted Kennedy) was lobotomized by her parents because of behavior issues.

Thursday, July 21, 2005

James Doohan Dies

I am sure every geek in America knows that James Doohan, Scotty from Star Trek died. What I didn't know was that he was a war hero. Doohan, who was in the Canadian army, came ashore on Juno Beach on D-Day and was severley wounded. He was shot multiple times in the arm and leg (and lost a finger) and was only saved because the bullet that would have hit him in the chest hit his silver cigarette holder. This is one of the few reported times that cigarette smoking actually saved someone's life. Doohan had recently been diagnosed with Alzheimer's. Having watched my father deteriorate from the disease, Doohan's passing so quickly after being diagnosed was probably a mercy.

The religion of peace

It looks like terrorists have attacked the London underground again. Is it really that these are simply Muslims who don't understand their religion? The NY Daily News reported that a recent study showed that 68% of Palestinians with some college education think that suicide bombers blowing up women and children is a good thing. Interestingly, the poorer and less educated of Palestinians are less likely to support terrorism (although the numbers are still high - 46%). And these numbers are similar to other islamic countries. In Lebanon, for example, the number is 40% of the population supports terrorism and suicide bombers. Australian Prime Minister John Howard said today, "Terrorism is the enemy of all free people." What does that tell us about these Islamic nations? Will Congress ever wake up to what is going on in the world?

Friday, July 08, 2005

Tuesday, June 28, 2005

Google Sightseeing

Google now provides satellite images for most of the world. Sites like Google Sightseeing have popped up to display some of these images. Take a look at the few I found and if you find any other intertesting sites, post them in the comments.

Mt. Kilimanjaro!Mt. Kilimanjaro - the tallest mountain in Africa. As the mountain rises out out of a savannah, the cooler temperatures create a forested landscape. The top of the mountain is covered with snow.
Wave to Al!Alcatraz - The former prison located in San Francisco Bay was the home of many notorious criminals including Al Capone.
GWB is just up a bitThe Washington Monument, Washington D.C. - Scroll around and you can see the Lincoln and Jefferson Memorials as well as the Smithsonian.
alt=Empire State Building, NY - Towering over the center of Manhattan... look closely and maybe you can see King Kong.

Wednesday, June 15, 2005

Road trip

We went to Baltimore yesterday to see Dr. George T. Capone at the Kennedy Krieger Institute. We have been seeing Dr. Capone for several years but it had been awhile since the last trip down because of Michel's illness. The trip should be between four and five hours but we got caught in traffic on the way down. Every cop in Queens was racing to investigate the shooting of a cop right off the Belt Parkway and they had a couple of lanes blocked off right in the middle of rush hour. We thought we had left with plenty of time to spare but we ended up getting there 15 minutes before the appointment. That is cutting it close!

Dr. Capone thought that Mikey may be experiencing anxiety. This could explain his hostility to environmental changes and his desire to do things like shake a sock for long periods of time. His obsessive behaviors may have a calming influence on his anxiety. Dr. Capone suggested some alternate medications to try and he also wants the school district to bring ABA into the house. Friday, Michael will get some blood tests and then we can start the new medication. Should be an interesting weekend.

Monday, June 13, 2005

Party like crazy!

My beautiful girl!It was a party weekend for Beth. Two of her friends had Bat Mizvah's this weekend. Her and her friends danced all day Saturday and Sunday. Beth complained that the boy's were all boring because none of them would dance. The musical high point was Saturday when the DJ played the Ramones, "I want to be Sedated". All in all, Beth has a much more active social life than her dull parents.

Compare this picture to the picture taken two weeks ago during the school trip. We have gone from a freezing spring to a broiling spring. Today was in the 90's and it is expected to stay that way at least until Friday. Summer is still eight days away.

Mikey Graduates!

I'm so proud!Mikey's graduation was Thursday. Here he is at the graduation party with his teachers. Two graduation ceremony funny moments... The kids put on a little musical number. Mikey was the only one who was really into it. He was dancing like crazy and really shook it up on stage. When they called Mikey up for his diploma, he got a big ovation. I think Mikey is very well known at the school. Anyway, when the applause started up, Mikey gave a huge smile, turned and tossed his diploma into the crowd.

Mikey is still attending the school and will be attending through the summer. We are still trying to work out where he will be in the fall.

Sunday, June 05, 2005

15 minutes and counting

My blog got a mention in the NY Daily News today (page 36). Dawn Eden, who wites their "Blog On!" column in the Sunday paper and is a friend of cousin Kevin, had written me on Thursday with a few questions. She didn't use any of my answers but that is OK. Sometimes you just don't know where an article will go until you start writing it. Also, I don't think I gave her the pro-blogging kind of answers she was looking for. I told her that I have had more response from my website than I have ever had from my blog. The one thing that bugged me about the article was the expression, "Down syndrome kids." Arghhhh, I hate that! It's "kids with Down syndrome,"... people first! Oh well, we can't expect everyone to get it right.

Friday, June 03, 2005

The Headbanger's Ball

Mikey has recently developed a new behavior. When he gets frustrated or angry, he bangs his head on the floor. He has been walking around with a big knot on his forehead for the last month. Behavioral intervention with ABA has all sorts of methods to use to stop bad bahaviors and increase the occurence of good behaviors. In fact, ABA can be used on any child as a way to improve behavior. Most of the methods for stopping bad bahaviors involve ignoring the child and not responding to the behavior. However, you can't ignore a behavior that could cause injury. Some might think that the child wouldn't really injure himself, but that doesn't take into account that children with autism often feel pain differently than other children. Our ABA book has exactly one paragraph on the subject, suggesting that responding to the behavior may increase the liklihood of it re-occurring. Thanks a lot for the wonderful advice. At this point we are a bit perplexed as how to stop the behavior.

Friday, May 27, 2005

School Trip

Argh!! Watch me hook, matey!I chickened out. Beth threatened me with bodily harm if I did anything to embarass her so I remained on my best behavior. We went to Blydenburgh Park in Smithtown where they have an exhibit of colonial industrial life. The Blydenburgh's had dammed a river and made what is now known as Stump Pond for their mills. In addition to the Blydenburgh's house, the site contains a carpentry shop, a blacksmith shop, a cook house, and a grist mill which are working today as exhibits. We saw a demonstration of cloth making using several materials including wool, cotton, and flax. The blacksmith let each of the kids make an "S" hook using a piece of steel that he heated in his furnace. In the cook house, the kids made apple pancakes which were quite tasty. The weather was cold for this time of year but at least it didn't rain.

Friday, May 20, 2005

Michel is home

Michel came home yesterday after having a catheterization. Nothing that should have caused her symptoms was found, so they decided to kick her out of the hospital and send her home. They don't do the procedure at Michel's hospital so they had to move her to Manhasset. Anyway, it will be a few days before Michel can go back to work.

Meanwhile, Beth's Social Studies teacher, Mr. Gordon, called me at work today. I had volunteered to go on a class trip next week and he was calling to confirm. It is all set for Thursday. So the question is, should I act real goofy so as to embarrass Beth or should I be on my best behavior? What do you think?

Tuesday, May 17, 2005

Mikey is in the newspaper!

Sing it!!Mikey is in Newsday. Go to the second page where the article talks about Mikey. The article is about music therapy but Mikey is given a good piece of the article. I have reproduced the part of the article that discusses Mikey. I apologize to Newsday but I'm afraid that the picture and article will be removed from their web site at some point.

Eight-year-old Mikey Paul has Down syndrome and many features of autism. He doesn't speak. Every Wednesday he gets off the school bus at home in Plainview and signs to his mother that it is time to get in the car. Wednesday is his music therapy day at the Rebecca Center at Molloy College in Rockville Centre.

"He's got a lot of emotion that we never saw," said Michel Paul, his mother. "Who would have thought music therapy would open the door for him? It's been amazing."

She says he is now using sounds approaching words. And he's noticing other people, which she said he never did before. She has also learned many things about her son, that he loves the Ramones and Louis Prima. His music therapist, John Carpente, writes songs for Mikey and weaves the types of music he likes into the melodies. They produce sounds together.

A year into Mikey's weekly treatment, Michel Paul noticed the first signs of independent and imaginative play. "He took a can and turned it into a drum," she said. "It was the first time I saw him playing with a toy like a typical kid."

Monday, May 16, 2005


Just when things start to go well...

Michel wasn't feeling well at work so she is now in the ER. She was complaining of chest pains and with her medical history she could cough and everyone jumps. Anyway, I am hoping that she is just over-tired. She hasn't been sleeping well lately and there is a possibility that she might have something like sleep apnea.

On the good side, I took Mikey to see Dr. Modlin (the ENT) and Mikey did well. Modlin put him on an antibiotic for his runny nose and slight inner ear inflammation but he said it was nothing too serious. And Mikey passed his hearing test with flying colors.

Friday, May 13, 2005

Ordinary World

And I don't cry for yesterday
There's an ordinary world
Somehow I have to find
And as I try to make my way
To the ordinary world
I will learn to survive

--Duran Duran

Betsy Ross Paul

Cookie!Aunt Tina will be proud!* Beth is taking a course called Home and Careers (what used to be called Home Economics back in the old days) this semester. One of the things they are learning is how to sew. Beth made a cookie pillow (as seen in the picture). She did a great job on the sewing and the pillow is soft enough to be comfortable while still being fluffy. (Beth told me that there was a tendency in her class to overstuff the pillows and make them too firm.) The pillow is, of course, a chocolate chip cookie. The dark brown bits are chocolate chips and the light brown bits are nuts. The colored rectangles are sprinkles. The cookie itself was machine sewn but all the other parts were hand sewn. Beth also made a little volleyball pin cushion to hold her needles and pins. Beth is having a great time in school this year. Once again she made the honor roll so that is the third consecutive semester on the honor roll.

Aside: Did you notice Beth got new glasses? And the braces may be coming off this summer!

* Aunt Tina is the family sewing expert.

Wednesday, May 04, 2005

Even Dark Lords Blog!

Am I cool or what!Jason over at JavaRanch pointed out that even Darth Vader has a blog. Some very funny entries. How can you can not love a blog that refers to Lando Calrissian as a metrosexual? The blog is the work of Matthew Frederick Davis Hemming of Story Zoo Studios. Here are some of my favorite excerpts:
I will say this for being a tyrannical dark overlord: you get great service at restaurants.

Getting some "me time." Mood: melancholy.

On a more banal note something has gone wrong with my left leg. For the time being I have avoided limping by overriding the control circuitry with the power of the force, but this is needlessly draining. I have called for a repair droid, but it has been over an hour and there is still no sign. Later, I will find the man responsible for dispatching the repair droids and crush his trachea with my mind.

Do you want to know what the worst part is? My left leg is still on the fritz. Whose trachea do you have to crush with your mind to get a little service around here?

Big day. Storming the rebel ice fortress. Took a nap first so I would be peppy. Leg feels pretty good. Admiral Ozzol took the fleet out of hyerspace too close to Hoth, and the Rebel Alliance were -- you guessed it -- alerted to our approach.

One of these days, one of these days, Ozzel: bang, pow! Straight to the moon.

The administrator of the facility was a quaking fool in expensive fabrics, introduced as Lando Calrissian. I took one look at his satin shirt and disco hair and I knew he was a weak specimen...

Monday, May 02, 2005

SAP Portals Continued

Now that we have downloaded and installed the Eclipse plug-in for SAP portal development, we can proceed with creating a project. Before we start, we need to decide which approach we plan on taking. SAP provides two different methods, PageContext and DynPage. We are going to use the DynPage approach because it is easier to integrate JSPs using the DynPage methodology.

To start, we go to the Eclipse menu and select File>New>Other... which will bring up a dialog box. The SAP plug-in has added a new choice, "Portal Application". Select this and two items will become available on the right side of the dialog box, "Create a portal application project" and "Create a new portal application object". Select "create a project," enter a name and directory for the project, and then push the "Finish" button. A new project is created which includes most of the jar files you will need. Two additional jar files need to be added because we are going to use the DynPage methodology, htmlb.jar and Add these to the project.

In order to write a DynPage, two classes are required. First, you need to create a launcher class. The launcher (or controller) must extend the SAP class, PageProcessorComponent and must provide an implementation for the abstract method getPage. The getPage method must return a DynPage object. Here is the beginning of our "Hello World" portlet:

package main;

import com.sapportals.htmlb.*;
import com.sapportals.htmlb.enum.*;

public class TestController extends PageProcessorComponent {
 public DynPage getPage() {
  return new TestDynPage();

The next step is to provide a DynPage. In this example, in order to keep it simple, we will not use a JSP but will generate HTML directly from our DynPage. The TestDynPage will be an inner class of the TestController. TestDynPage will extend DynPage and must provide an implementation for the three abstract methods, doInitialization, doProcessAfterInput, and doProcessBeforeOutput. We will provide empty implementations for the first two. The doInitialization method is invoked only the first time the user enters the page. The doProcessBeforeOutput is invoked after doInitialization the first time and after the doProcessAfterInput method on subsequent calls.

There are two other classes that we need to worry about. First, the Form class that provides us with the area of the screen that we can write on. The second class is the TextView class which is one of the SAP provided HTML-Business (htmlb) classes. These classes work in a very similar way to the JSF classes in that they automatically generate HTML and provide an event based methodology to respond to user actions. We will worry about events in our next attempt. In this example, we will simply send some text to the screen.

The steps are fairly simple. First we get the Form from the current DynPage. Next we create a TextView, add some text to it, and then add it to the Form. And that is it. All that is left is to look at the rest of the code:

 public static class TestDynPage extends DynPage {
  public void doInitialization() {}

  public void doProcessAfterInput() throws PageException {}

  public void doProcessBeforeOutput() throws PageException {
   Form aForm = this.getForm();
   TextView label = new TextView();
   label.setText("Hello World!");

Friday, April 29, 2005

Another Review Posted

I finally posted another review after a long hiatus. This time I reviewed a C# book published by Mike Murach and Associates. I am glad I liked the book because I have had dealings with Mike and he is a very nice person. I would have hated to have to write that his book sucked. I have been using his books in all my classes and generally my students like them. Certainly they are much more popular than the Deitel books which I had used for a couple of semesters.

Friday, April 22, 2005

A new dog

WoofWe are the proud owners of a dog, which makes me glad I don't live in Turin. We picked up a Boston Terrier through a rescue agency. The dog had been taken from a puppy mill that was using her for breeding. The dog's name is "Lily Beans". We drove out to New Jersey a couple of weeks ago and picked her up. Her name was Lily but the "Beans" was added because the dog is rather... flatulent. On the way home Michel kept asking if it was the dog or just New Jersey that stunk. Anyway, the dog has a great personality. Mikey loves her because she gives lots of licks and doesn't growl or bite no matter what he does to her. The cats don't particularly care for her. We are working on getting them to be friends but this appears to be a long effort. Lily Beans is a small dog (17 pounds) and is five years old. She's already housebroken but she doesn't appear to know any tricks other than to retrieve. She sleeps in a pet carrier in Beth's room at night so that we can be sure she doesn't bother the cats. As with most Bostons, she snores and drools when she is sleeping.

Wednesday, April 20, 2005

Benedict XVI

Pope Benedict XVIThe headline reads, "Leaders Welcome New Pope, Liberal Catholics Dismayed." I guess the liberal Catholics were hoping for a Pope that would abandon Church teaching and let them have some fun. The liberal Catholic mantra seems to be, "But the other religions get to do it, so why can't we?" The idea that if they want to be like the other religions they can simply convert doesn't seem to occur to them. They want their cake and to eat it too. They want the tradition and majesty and faithfulness of the Church without any of those inconvenient rules. The new Pope is unlikely to go along with their ideas. As one person complained, Cardinal Ratzinger actually had the nerve to (gasp!) fire a Catholic theologian who was teaching heresy at a Catholic university! "Ratzinger is not the Pope that we would ideally like," said Joelle Battestini, associate convener of the Australian group Ordination of Catholic Women. Yes, I bet that is true. But he is exactly the Pope that the Church needs.

Portal Development in SAP

It has been awhile since I wrote anything about work. I am part of the team that is writing the new enterprise portal (EP) for my company. The new EP will be developed using SAP. My plan is to discuss the process of developing portlets in SAP as I learn about it.

The first thing to note is that you have to be a member of the SAP Developer's Network (SDN) to get access to the downloads required to do portal development. SAP uses Eclipse but with special class files and plug-ins. The plug-ins allow the creation of par files (portal archives) which can be loaded into EP. So the first steps are to download and install Eclipse and then download and install the Eclipse plug-ins. This version of the plug-ins requires Eclipse 2.1. We are using JDK 1.3 for development.

Next step... develop a simple iView (portlet) using the SAP provided class files.

Friday, April 15, 2005

Aunt Tina

I have a couple of notes from Aunt Tina. Those who are regular readers may remember that Aunt Tina dropped in from Phoenix for a visit last month.

First, Aunt Tina sent a present to everyone in our house from Amazon. Michel got the book, Rats: Observations on the History and Habitat of the City's Most Unwanted Inhabitants. Beth got the ultra-cool book, Sisterhood of the Travelling Pants which she has almost finished! Mikey got the new Spongebob Squarepants Movie which the whole family has been enjoying. And I got the best of them all, Baudolino by Umberto Eco. The best part was the comment Tina put on the note that came with the order... Tom - This has your name all over it. Actually, it just yelled at me and said: "Give this to Tom." Being told that a book by Umberto Eco calls out your name is quite a compliment. Tina must think I'm a smart cookie. As soon as I get my new reading glasses I will start reading it.

Second, I received an email from Tina in which she said she saw an article that made her think of me... "Doctors Remove Leech From Woman's Nose". I will leave as an excercise to the reader to determine what this means Tina thinks of me! ;-)

Tuesday, April 12, 2005

Happy Birthday Mikey!

Yesterday was Mikey's 8th birthday. I can't believe how much he has grown. Thinking about Mikey's birthday got me thinking about the website, Down Syndrome: For New Parents, that grew out of Mikey's birth. The site is the result of what I do for a living, computer programming. I wanted to learn about Down syndrome but I also needed a therapy, a need to do something. The site grew out of that need. I started on GeoCities as a free site with a single page and the answer to a few questions that I had looked up. The site grew bigger and bigger during the first couple of years after Mikey was born. At some point I added a simple forum and then updated it with a more complex forum. I am not sure when or how it happened, but at some point the site reached a critical mass and the forum exploded with parents supporting each other. Strangely enough, this occurred with virtually no help from me.

As Mikey got older, we realized that Mikey was not like typical children with Down syndrome. He could sit and spin a plate endlessly even though he had very poor fine motor control and couldn't even hold a crayon. In fact, Mikey would spin anything and stare at it. We sort of knew that Mikey was autistic although we avoided saying it. When we took him to Johns Hopkins for an evaluation, Doctor Capone told us that Mikey was probably autistic but he wasn't telling us anything that we didn't already know in our hearts.

Once I realized that Down syndrome wasn't going to be Mikey's big disability, I started participating in my own site less and less. At the same time, I had no desire to start an autism web site. Down syndrome is something understandable. We know what causes it, we know what kind of behaviors to expect, we know what the future holds to some extent. But autism is a blank slate. I don't understand autism. I don't understand what is going on inside of Mikey's brain. For example, Mikey will ask me for a sock. Unless I give him a very specific type of sock he will reject it. When I give him the right sock he will sit and shake the sock while staring at it. Why? I don't know. He doesn't smile or laugh while shaking the sock so I guess it doesn't make him happy but it must provide some kind of stimulus that he likes. Sometimes when I am sitting with him on the couch, he will try to remove all the creases from my pants, an impossible task as moving one crease creates another. But he can do this for long periods of time. In other ways he is very typcial; he likes to dance and to watch videos and go for drives in the car.

Mikey is a riddle wrapped in a mystery inside an enigma. He is cute and wonderful and funny and full of love. I don't understand him but I love him more than mere words can say.

Friday, April 08, 2005

Killing Terri

I knew it wouldn't take long for it to happen. The first article was an opinion piece in Wednesday's New York Post. The author makes the point that if killing Terri was the right choice then we need to punish those who don't make that choice for their loved ones. The author tells us that New York state spends $14 billion a year on long-term care. We need to get those costs down, he tells us. Families feel the pain of taking care of a loved one who is in long term care, but they don't feel the economic pain so there is little economic incentive to get them to "pull the plug". It's time to make people pay out of their pocket so that they will be more likely to make the "right" choice and dispose of this drain on the public largesse. The author ignores the fact that not everyone in long-term care is on a feeding tube so I assume the author would have the state provide suitable pillows to suffocate those that are in long-term care but still manage to feed themselves.

So why am I not surprised? Because as a parent of a child with Down syndrome I have been told that the state shouldn't pay for services for Mikey because we chose to have Mikey. Down syndrome is "preventable" so why should the state pay for my "bad choice". This is what choice is in America today... choose to dispose of those who are an inconvenience or pay the consequences. And if you dare to disagree, you are just pushing your religious views on everyone else.

Wednesday, April 06, 2005

The Pope

Pope John PaulI happened to glance at Salon (yes, I know it isn't worth reading but...) and an article by Joan Walsh caught my attention. Ms. Walsh says that she can't forgive the Pope because her mom left the Church near the end of her life in 1976 because of the Church's stand on abortion. In other words, Ms. Walsh is mad at the Pope because the Church has moral values that she doesn't like. Tough! One wonders if she would be equally mad if her mother had left because of the Church's stand against adultery. In fact, the absurdity of Ms. Walsh's article can be seen by simply replacing "abortion" with "adultery".

Mark Steyn in the Daily Telegraph brings this point home. "The root of the Pope's thinking - that there are eternal truths no one can change even if one wanted to - is completely incomprehensible to the progressivist mindset." The Church believes that there are universal truths that can't be abandonded because they are uncomfortable or have fallen out of fashion and the dignity of the human person is one of those universal truths. The Church will greatly miss Pope John Paul. We can only hope his successor will carry on with the vigor that John Paul brought to the fight for the sanctity of life.

Monday, April 04, 2005

Daria - The Misery Chick

Daria!There are not too many TV shows that Beth likes that both Michel and I also like. Beth and I like a lot of mystery shows such as Nero Wolfe but Michel has no interest in them. One show that we all enjoy is Daria which used to be on MTV eight years ago and is now on The N in reruns. Daria is a high school girl who is really smart but is surrounded by fellow students who are interested only in their looks and their sports teams. Daria Morgendorffer is probably the most cynical person on the planet and because of her attitude everyone thinks of her as the "misery chick" even though she really isn't miserable. Daria's sister is a member of the fashion club, the school group whose main concerns are clothes and makeup. (Michel does a great imitation of Sandy, the president of the fashion club.) Each episode follows Daria as she attempts to get through another day of high school. The main problem with the show is that it is on at 4 in the morning and isn't available on DVD! So we tape it. If we had Tivo life would be easier.

Friday, April 01, 2005

New P2P Communication Technology

Opera Software ASA has announced a new breakthrough in P2P, direct, real-time, platform independent speech technology. The press release reveals some of the details of this incredible breakthrough. The key details are revealed in this line, Based on open standards, Opera's patent-pending P2P speech technology uses analogue signals carried through open air, enabling users to communicate in real- time without the use of computers or mobile phones. There are several drawbacks related to the system including limited range and serious privacy issues. There are also issues related to being able to recognize a message sent to a specific peer. However, the ease of use of this new technology and the low cost will probably lead to wide spread adoption.

Thursday, March 31, 2005

The Dog Doo Robber

The headline of this article on yahoo caught my attention: Thief Steals Poop From Woman Walking Dog. A thief grabbed a bag of poop from a woman walking her dog and then tried to shoot the dog(!) but his gun wouldn't fire so he fled empty handed. This is someone who should think about another line of work. There is nothing but a long prison sentence in this guy's future.

The title of this blog entry, by the way, is stolen from the URL of the article.

Know Your Rights - Or - Living with a pre-teen

My daughter likes to listen to music when she goes to sleep. She normally listens to a CD she made from songs she bought off iTunes. I am the first one up in the house in the morning. The ironing board is in the empty bedroom next to Beth's room so every morning I hear the song, "Know Your Rights" by the Clash which is a song Beth likes because it is sort of funny ("... a public service announcement with guitar.") For those of you who are unaware, the Clash have determined that we have exactly three rights. First, you have the right not to be killed. Second, you have the right to food money. Finally, you have the right to free speech. Of course, each of these rights have caveats that are explained in the song.

Mikey has been watching the movie, Elmo in Grouchland a lot recently. In the movie, there is a scene where the Sesame Street gang is arrested by the Grouchland police and informed of their grouchie rights. This led to the following conversation with Beth:

Me: Beth, did you know that the Clash forgot one of the most important rights?

Beth: No, which right is that?

Me: The right to scream your head off!

Beth: (rolling her eyes) I am going to forget we ever had this conversation.

A CEO who cares

I returned to work this past Monday. I still haven't completely caught up with the backlog of work. I had ignored my voice mail while I was home so there were a few calls waiting for me. One of them was from the President and CEO of Symbol, Bill Nuti. He was calling to check to make sure I was OK and to let me know that I was in his thoughts and prayers and that if there was anything that he or the company could do for me to let him know. Last year after Bill did a presentation to everyone about the future of the company, I told my wife that I thought he was a great leader and had a great vision for the future of Symbol. Something like this shows that he is also a good person.

Thursday, March 17, 2005

Syncopal Episode

Ouch!If you recall, back in April of last year I had a syncopal episode (I passed out). It happened again yesterday. This time I landed face first on my desk and and had to get stiches. Neurocardiogenic syncope (or vasovagal syncope) is the likely diagnosis. I knew I was going to pass out because there is a certain feeling that I get just before it happens. I tried to get down on the floor and raise my feet but I was too slow. One of the problems is that your brain is shutting down because of a lack of blood supply so you don't always think clearly.

Anyway, the next thing I remember is being put on a stretcher and heading to the hospital. I don't recommend Stony Brook University Hospital. The nurse forgot to check my IV and it infiltrated swelling up my arm. The doctor didn't even think of getting an X-Ray in spite of the bad bruise on my eye. The Plastic Surgeon was very nice although I had to insist on a Plastic Surgeon. They were going to have a regular doctor stich up my face. So it will be a few days before I go back to work. I think it might have been too much stress that led to this.

Michel is at her hearing for her Worker's Compensation and later she has to go see the Oncologist. Mikey wouldn't get on the bus and since I don't have a car I couldn't get him to school. Later, Michel has to take me to the cardiologist so there is no rest for the weary. Tommorow, Michel is back to work. I know she is nervous but excited. I wonder if she will wake me up at 5AM!

Tuesday, March 15, 2005

Conference Day

Today is the day of Beth's special conference. I think it was finally dawning on her how special it is that she is 1 of only 16 girls (out of almost 500) that were chosen to attend this conference. She woke up at 5 AM this morning and couldn't get back to sleep. And this is a girl who normally gets up at 7:50 to catch a bus at 8:10. She came into our room at 5:00 AM and woke me up:

5:00 AM
Beth: I woke up and I can't fall back asleep.
Me: Well, lie down and you'll go back to sleep.

5:06 AM
Beth: I still can't fall asleep.
Me: You have to give it more than 5 minutes. Go back to bed.

5:13 AM
Beth: My stomach feels funny.
Me: I'll get you something. (Trudge downstairs and find something to settle her stomach. Back into bed at 5:25).

5:32 AM
Beth: I feel shaky.
Me: Are you sick or just excited?
Beth: I think I'm too excited!
Me: OK, try lying down and listen to some music.

5:45 AM
Beth: I'm too awake.
Me: OK, let's get up.

So we were up at 5:45 and she needed to be to school at 7:30. This is most definitely a first!

Update: Got the word about the conference... "it was great!"

Monday, March 14, 2005

You ordered cherry pi!

As Michel pointed out to me, today is March 14th (3/14), which is pi (3.14) day. I'm not sure what the proper way to celebrate pi day is, but we had fajitas for supper (fajitas are round). So how did you celebrate pi day?

Saturday, March 12, 2005

A visitor from out west

Tina and MichelMichel's cousin, Tina, was in New York City on business and was able to come out and spend the day with us before she had to head back to Phoenix. Tina is very popular in our house. Beth thinks she is a very cool aunt and Mikey loves her, too. I am sure Tina's kids will be surprised to find out how cool their mom is!

Tina's works for a bank that just merged with Chase which is based here in New York so Tina may have to take trips to our neck of the woods every once in awhile. This was the first time we had seen her in almost two years. Those long telephone conversations don't make up for not getting to see her. I can't remember the last time we saw her husband, Chris, and her kids but we miss them all.

I know Tina's mom check's out the blog so I took this picture of Tina and Michel.

Friday, March 04, 2005

My little girl

Beth and MikeyI can not say enough how proud I am of Beth. Beth had a potentialy tough transition moving from a private school to public school. She was moving into the 7th grade which is the middle grade in the school at an age when developing new friendships is not always easy. And yet she has made friends with a great group of girls and has had an outstanding year so far. We got Beth's report card and she got straight A's and made the high honor roll. Last night we found out that (based on the recommendations of her teachers) Beth has been invited to a special conference at the State University of NY at Stony Brook called "Today's Girls, Tomorrow's Leaders". Only eight girls in the 7th grade were invited to attend. Way to go Beth!!!

The picture shows Mikey asleep on his sister. This shows what a great sister/brother relationship they have and what a good big sister Beth is to Mikey.

Friday, February 25, 2005

Home Again

After running a bunch of tests the doctors decided that they have no idea what is causing all the pain so they sent Michel home yesterday. That isn't quite true that they have no idea. The urologist suspects that it is the kidney stone they found using the ultrasound. To be on the safe side, they made an appointment for Michel to see her neurosurgeon just to check to see if it might be the shunt. The end of the shunt is on the side where Michel is having the pain. So tonight she gets to see Dr. Bolognese.

Paolo A. Bolognese MD I haven't written much about Paolo A. Bolognese, M.D. Associate Director of the Chiari Institute. He was the other neurosurgeon in Michel's surgery. He is from Italy and is "the leading worldwide expert in the field of laser Doppler flowmetry applied to neurosurgery, and the top European figure in the field of neurosurgical intraoperative ultrasound." He came to the USA to work with Dr. Milhorat. I have met Dr. Bolognese a couple of times and he is a very nice man. You really get a sense from him that he cares about his patients.

Wednesday, February 23, 2005

What is old is new again

Michel is back in the hospital. She was having pain on the right side of her abdomen all day on Monday but it got so intense Monday night that all she could do was lie on the floor. I called the volunteer fire department and they took her to the local hospital (the same one where she works). They are in the process of running tests but so far they have been saying that they don't know what it is but they don't think it has anything to do with her shunt. Michel's parents have come to the rescue again. They came out yesterday afternoon to watch the kids. I don't know what we would do without them.

Sunday, February 20, 2005

Bringing things up to date

When life gives you lemons... whine about it in your blog.

It's been awhile since I brought everyone up to date. Michel did not get back to work as scheduled on the 14th. Her lymph nodes have been swollen for two months so the doctor decided that she had to stay out of work another month. In fact, the doctor sent Michel to see an Oncologist. I guess he decided we didn't have enough to worry about. Anyway, Michel will see him next week. Meanwhile she gets worn out very easily and has been taking a lot of naps. Her spirits are pretty good considering all she has been through. She is upstairs watching a special about Saturday Night Live and I can hear her laughing.

Michel had her worker's comp hearing and everyone agreed that she should be getting her money but we still haven't received a penny. It was another piece of paper work that had to be filled out by the doctor before they will pay us the back money and start paying her again. Next hearing is on St. Patrick's Day.

I do have some good things to talk about but I'll save them for another blog entry.

Saturday, January 22, 2005

The Blizzard of '05

Look out!We are in the center of this map, surrounded by white. At this point we had close to a foot of snow on the ground and more coming. Apparently there is a lot more to come as the low goes below us and brings more snow from the east creating a typical Nor'easter. The counter-clockwise spin of the low will pull moisture from the ocean and dump it on us as more snow. They say that it will snow until noon tomorrow.

Look out!I went out around 9:30 PM to shovel and cleared the sidewalk and driveway. I am out of shape and came in exhausted. The snow was light because it is so cold but because there was so much snow it was still a lot of work. So I'm taking it easy now and hoping that the wind doesn't make all my work a waste of time. Nero Wolfe will be on in a few minutes. Beth and I love this show and always watch it together. A cold beer, Nero Wolfe, and then off to bed for a good night's sleep.

Tuesday, January 18, 2005

Life Update

Some good news...
  • Michel is doing better every day. Her head is healing, the pain is lessening as long as she doesn't overdo things, and her hair is growing in!
  • We have an aid starting today. They finally found someone who lives nearby and doesn't mind walking to the bus stop. (We aren't exactly convenient for the bus.) They had been trying to find an aid with a car but that, apparently, is very difficult. The aid will start every day at 3 PM and stay until around 9 PM.
  • My beard is filling in very nicely and doesn't itch anymore. I don't know if it is the conditioner, if it's getting softer as it gets longer, or if I'm just getting used to it.
  • I have finished two books and I need to write reviews. I am falling behind in my reading and the pile of books is getting higher.

Make a left at Germany

Scenic RouteHere is further proof that you should always sanity check any directions you get from the web. Go to MapPoint and ask for directions from Haugesund, Rogaland, Norway to Trondheim, Sør-Trøndelag, Norway. To get from one city in Norway to another, MapPoint will send you on a 1,685 mile journey through England, France, Belgium, Netherlands, Germany, Denmark, and Sweden. The total expected time is 48 hours, not including time spent waiting for ferries. The directions include 116 separate steps, which is a record as far as I know. Reverse the two cities making Trondheim, Sør-Trøndelag the starting point and MapPoint will give you directions that are more direct, taking you 11 hours to travel the 476 miles between the two towns. So either Norway has a serious issue with one-way roads or MapPoint needs some revision. Perhaps it is worth noting that MapPoint is a Microsoft product.

Thanks to Language Log for pointing this out.

Edit: The above directions are for the "quickest" route. Changing your selection to the "shortest" route sends you on a trip on the ferry to England, driving west for half a mile, turning around and driving east for half a mile, and getting back on the ferry to Norway. The directions say this trip will take 51 hours!

Friday, January 07, 2005

Separated at Birth

Michel and FriendHere's a picture of Michel and her good friend, Squidward. I picked up Squidward at the hospital gift shop while Michel was still in because they look so much alike. It is less readily apparent now that Michel has some hair back, but the resemblance was uncanny when Michel was bald. For some reason, Dr. Bolognese thought she looked more like Patrick but I don't see the resemblance. Beth made me buy the complete set, so not only do we have Squidward but also Patrick and Sponge Bob.

Michel's recovery continues to go well. The doctors say that Michel can go back to work next month. Meanwhile, she has a hearing about her Worker's Compensation at the beginning of February. Since the doctor picked by the insurance company said that Michel can't work and that her injury occurred at work, I don't understand why the insurance company just doesn't admit they were wrong and start paying again. I hate insurance companies!