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.

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

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.

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?

7/7

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 - 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.
Alcatraz - The former prison located in San Francisco Bay was the home of many notorious criminals including Al Capone.
The Washington Monument, Washington D.C. - Scroll around and you can see the Lincoln and Jefferson Memorials as well as the Smithsonian.
Empire State Building, NY - Towering over the center of Manhattan... look closely and maybe you can see King Kong.

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.

Party like crazy!

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!

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.

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.