Sunday, June 29, 2008
My adult son Jonathan got called into the architect office where he works at 6PM Sunday. Seems they have been drawing up plans for George Hamilton's Palm Beach Condo and there was an architectural emergency. Rush job.
Only in Palm Beach do you have architectural emergencies.
Mom to "normal" kid: It's your turn to do the dishes
Normal Kid: I did them last week. Anyway I have too much homework to finish and my softball game is starting in four hours. And I think it's Nancy's turn.
Mom to kid with Down Syndrome: It's your turn to do the dishes
Kid with Down Syndrome: YAY!
Saturday, June 28, 2008
It occurred to me this morning as I was loading the washer that I could solve the whol massive laundry problem that a family of 11 creates.
It's easy. Just give each child one set of clothing, one towel and washrag and one set of sheets. Every morning you wash the sheets and at night when the kids remove their clothes you pop them in the washer.
OK...that's impractical, but I can dream can't i?
Thursday, June 26, 2008
The lady said, "Oh, I'm so sorry to hear that!"
I get that all the time. What's funny is that I'm not sorry Will has DS. He wouldn't be the WIll I know and love if he didn't have DS. And Will, himself, isn't concerned that he has DS. He could care less. He's happy.
Some people think that it's a tragedy that a child is born with Down Syndrome. I don't think it's any more a tragedy than a child is born with, say, blue eyes. It's how God made him, and I'm fine with that. So is Will.
Speaking of adults with DS, Matt and Jennifer, both 23, go to the regional Hab Center to work every day. They get up at 6 and take a bus downtown to the center, work all day for a paycheck and take the bus home. Every morning, Matt makes a bag lunch for both himself and Jennifer.
Something happened to Matt's funding stream, and for a time now he's had to stay home on Tuesdays and Thursdays. He could sleep in, but Matt gets up those days and faithfully makes Jen her sandwich and packs her lunch. THAT'S Down Syndrome for you.
Wednesday, June 25, 2008
I have 7 kids in summer school. Six are going to the same high school special ed program. Two are in one class and three in the other. Jeremy goes to the specialized county run school for MR kids with extremely bad behavior.
Got a note home from the teachers that they wanted $5 per kid to buy a BETA FISH (also called a Siamese Fighting Fish.) The kids will learn how to take care of the fish and at the end of summer school will be able to BRING THE FISH HOME. NO WAY.
We have three cats, and we have WILL and JEREMY. Those fish would not survive, and if they did it would be because I took care of them, and I'm not gonna do that.
Hey, you can't even put them into an aquarium together as they'd kill each other. And I guarantee that Will and/or Jeremy would do the honors if they were brought home in little one fish bowls.
The school isn't answering the phone this AM...ARRGH.
Monday, June 23, 2008
Having him home by himself has been a pleasure. He says please and thank you, hasn't gotten into anything, has kept himself busy and it's been a good experience for me due to his recent outbursts.
Such a nice thing to see the real boy behind the little monster that's been living here lately. I have him by himself until Friday when there is no summer school, and then next week they are all out of the house.
Thursday, June 19, 2008
No blowup, I'm happy to let that pass.
I'd like to wax a little bit political this AM. American tax money has been building hundreds of roads, bridges,water treatment plants in the past few years. Sounds good. Visit THIS page for a short video.
Wednesday, June 18, 2008
I'm now paying Ross $1 a day to shadow J and report back BEFORE he gets into trouble. So far so good, but of course it's only 10:00. Small price to pay and it does three things for me.
1. It prevents J from beginning any mischief, as I get fast warning that he is starting something.
2. It gives Ross something to do-that he gets paid for.
3. I can work online and write more than two sentences before I have to get up.
I'll report back at the end of the day...
Sunday, June 15, 2008
I really am able to forget some of the bad stuff. I don't know how that came about., but it was not all that long ago that I acquired that skill set. I do remember still the boy figuring out on Friday night, how to get into the locked kitchen and bamboozalling us for about an hour until we figured it out. He managed to get in three times without us seeing him, and came out each time with a ton of pop tarts, and soda cans, and the last time a big plastic glass filled with ice cream. Each time Dad was able to get the stuff back with minimal scuffling.
We have a "window" between the kitchen and the living room which we have filled with upright porch type posts to keep kids from crawling into the kitchen. Turns out that our son was able to get his arm through the space and twist it around until he could tun the doorknob and open the door.
Now, Ross has been able to do that for a long long time. The difference is that once told he isn't allowed to do that, he stopped. It took J several months to figure it out, making Ross boast, hey, I'm smarter than him. I figured it out a long time ago. Which was a funny statement here in this family where everyone is MR. Nobody EVER talks about the intelligence of any of their brothers or sisters. They just accept that everyone was born different.
So, to keep order, I found a piece of sturdy plywood and dad screwed it into the posts so the kid couldn't get his arm in there.
So I went back to using the computer and Dad went off to change Jay and then I hear this loud banging. Wunderkind has picked up a metal high back dining chair and was pounding the top of it into the plywood. It held...but it really ticked him off.
The main difference in our parenting styles is that I'm able to drop the whole bad incident in a couple minutes. I really try hard to stay in a good mood, and I refuse to let anyone knock me out of that perspective. My husband lets it stew in his brain for hours. That used to be my operating style, too. But not anymore.
I just remember that there is a little (well 15 year old) boy with Down Syndrome in there who really does love us and whom we really do love. And I don't want to feed the universe negativity about him that would just make him worse. You get what your mind is focused on. If I focus on his bad behavior, I'm sure to get more of it.
It's very hard to discipline this kid. ANY discipline (and none of it is physical, by the way) will set him off again and worse this time. So I find it simpler to overlook a lot of the little stuff and to state how that was wrong, but not consequence him. Like today, Dad was bringing groceries home, and let the kid go out and bring in grocery bags. One the way in he apparently stopped and took out the whipped cream can that was for tonight's snack-strawberry sundaes. and ate practically the whole can. I found it in one of the bags when I was putting it away.
Now we could have told him that now he doesn't get a sundae. But that would have meant another couple hours of banging holes in walls, tearing doors apart, tearing down curtains and blinds, breaking his box spring, breaking into his siblings rooms and breaking their prized possessions...So we didn't do anything else. His Dad told him that it was a bad thing to do, but that was as far as he could get without giving US the consequences.
Dad is still stewing about it. Not me.
We had our friend Ms. Cindy who is a behavior specialist psychologist out on Friday before the kitchen incident. She didn't tell us to set up a token reward system or any of that behavior mod stuff that never seems to work. She says we really need a large man to shadow the kid around for his entire waking hours just to prevent him from doing these things. That if he siply isn't ab le to do them for a long enough period, that perhaps it will lessen. Working on getting the funding for that. Cynthia says she has two good men in mind for the job...
Tuesday, June 10, 2008
Here's what Neale wrote: (well what his autoresponder sent me...)
On this day of your life, I believe God wants you to know...
..that morning comes every day; the sunrise does not
fail, nor the sunset.
Give it time. That is all that may be required. Just give
it time. Do not try to push the river. The cycles of life
present themselves, play themselves out, and make
smooth every passage and terrain.
Try not to get caught up in your story of the moment.
Look, rather, to the Long Story. Therein will be
found your peace. The cycles will redeem this
moment, if you let them, and even this shall pass. <<
I needed that...
Monday, June 9, 2008
I have had the rather unpleasant experience since the beginning of May of having diarrhea several times a week, and sometimes nausea. Always at night and for the whole night. Other than that I've felt well. But this has become disconcerting to the point where I was considering going to the doctor for it.
Today my husband tells me that he just read about a fifteen state recall of tomatoes. My state is one of those. Not all tomatoes, just the ones that are picked green and gas riped...aka most supermarket tomatoes out there.
The culprit is salmonella. And I've been the major eater of this veggie/fruit or whatever it is. I use them in sandwiches.
The recall doesn't apply to vine ripened tomatoes. And you can tell if they are vine ripened because they still have the vine stuck to them. Of course they are more expensive.
I'm just glad that my kids aren't particularly fond of tomatoes, or we'd have been in for one horrible sickness spell.
Saturday, June 7, 2008
This photo was taken by a newspaper back in the year 1995. We had 18 kids living in the house, and three children who were out on their own. We had already experienced the loss by death of three children.
When my husband pulled this out of a pile of papers he was filing, my first thought was that this must have been a terribly parenting-intensive time. And it was. But was it unmanageable? No. Was it possible to give each child idividual attention and love? Yes. Did I enjoy it? Yes, most of the time. Would I do it again? Probably. Am I glad we did it?