Lord, grant me the PATIENCE!!!!

As usual the day started off with children bickering. Jack was especially a grumpus. Nothing was right. But when I picked them up tonight and offered to take him to my office and make a copy of his favorite story out of his reader I was back in his "mother of the year" vote. :-)

So, more about my trip down south. Some history before I tell the tale: My sister (Jill) is 11 years older than I am. When she was 16 she got to take the car (and me - as always) to the movies with explicit instructions to go there and come right home. Well, we didn't. So when we got home I skipped into the house and the folks asked me "how was the movie?"

"Fine, till we hit the ditch" I said.

Soooooooo this last weekend my sister and I were allowed to take my folks' car again - only this time we had to take my Mom. This was my Dad's idea "because of the last time we took the car". :-)

When we set off Jill drove and I got to sit shotgun and be wingman (read the map S) . So, after reading mapquest off to her and driving about 2 1/2 hours she says "oh, this looks familial". Now, this being said - wouldn't you drop your guard and not pay attention to the map anymore? YES, you would - I know you.

So this is what I did. Only after a lot more driving she decides we've gone too far and turns around and then makes a left into what she thinks is Columbia MO. Only it's not. And as we cross the MO river I say "was that the MO river?"

"yes." she says
"I think we're in Jefferson City "
"no, we're not."
"But isn't Jefferson City the capital of Mo? And doesn't that look like a capital building?" I ask seeing a looming domed building on the horizon.
"there are all kinds of buildings like that. Look at Carthage it has a building like that. We're not in Jefferson City."

I then shut up and we make our way to a gas station and when we walk in and my sister begins to get directions she asks "well where are we?"

"you're in Jefferson City ." The two teethed old man replies.

How about that. So then it becomes all my fault because I didn't *say* anything. :-) So I guess my Dad's idea didn't work too well, because my Mom (with her own map in the back seat) didn't say anything either. :-)

We did find Columbia after that and the hospital and settled in for a visit. The trip back to my Mom and Dad's house was non-eventful.

Lord, we have a good time together. It was nice to get out without the hub and the kids too.

My goofy little dog rode on the center console most of the trip south. She likes to see the road and all the goings on. When we came back she slept the whole way. :-)

My nephew(Brad) got a new job. He is now the principal of Carthage High School - only I think they've consolidated with a couple of other schools because they have a name like Western IL or something like that. I didn't get to see him or Mick - I got there too late to go to Gus Macker.

I also forgot to look at my buddy's new Hay Store Building. I'm not exactly sure what they're calling the business - but as we went through Camp Point I forgot all about it. I'm sure I'll get a tour the next time I have some time "back home".

Books to Write

I traveled south this weekend and my sister and I went to visit my bro-in-law in rehab in MO. As I was driving home to my house on Monday (4 hours ALL to myself - :-) I got to thinking about all of their stuff and decided maybe I should write a book about it all. "Wheelchairs in the Real World". You know, we've heard from Christopher Reeves - what about the average middle class family and how a accident of this proportion "reforms" your life. I'm going to put some words down and see how it goes.

Our visit - well, he can move his hands better - enough to operate the joystick on a wheelchair but not enough to feed himself. He's getting some feeling back but they are still saying about a 20% chance of walking again. I'm really hoping the next 3 weeks have some miracles in store.

As we were sitting and talking before I went home we both realized we were now BOTH in the world of special needs. She had to learn the OT and PT lingo (occupational therapy and physical therapy) , he had a speech therapist visit, we are both riding the information highway on how best to care for our loved one in the future, we both have to purchase special items to help our loved ones succeed and we both worry a lot about the future.

So, I told her "Welcome to Holland" (a special needs poem ) and we both cried. :-)

Mabel (the subject of several children's books I have in mind) cornered a raccoon this weekend. The problem was that the coon was out in the hot middle of the day and he/she wasn't running away - even when Missy got Mabe into the car. So we kept the dogs in till later and when we went outside we found Mr Coon had climbed up into the tree and he was so sickly he wasn't moving. We called Tim to bring his gun over and he shot him out of the tree.

I think Mabel was quite proud of herself. Her and Tiny went out to the pasture that night and barked at the coyotes so they wouldn't come any closer. My, did we feel protected. :-)

Mabel also helped plant the field next to Missy's house. She ran after the tractor just like a farm dog. :-) She also thought she was big stuff because she got Chunk's bone and hid it. She just pranced around with it in her mouth.

She's Really Growing Up!

Sal went to her first Jr High social last night. It was just for the incoming 6th graders. She was a little intimidated at first - she didn't want me to leave - but then she spotted Connie from down the street and globed on to her. She then turned to me and said "Ok, you leave".

Don't ask me why - but as I was walking down the hall I started crying. Lord, I'm a mess. Sal started her school life at the tender age of 3. I put her on a bus knowing she had a 45 minute ride to school - never shed a tear. Kindergarten came and went - still nothing. But at a stupid social I'm bawling like someone has just taken my baby. CRAZY!

So this morning I asked her how it went. I had dropped her off and then went to a Lia Sophia party at my friendly farmer's house. :-) She was in bed by the time I got home. So I asked her how things went and who she hung out with. From what I could get out of her she had a good time and she met a new boy, Ryan, from another school!!!! ;-) So I was happy that she is already making new friends.

Jack got a HIT at baseball last night!!! A double! And guess what - I wasn't watching! I was talking to another Mom! :-/ Ok, unless Bill is with me, I rarely talk to people - not that I'm rude - if they talk - I talk - but I don't seek people out usually like Bill does. But this lady was there from last time and we had talked before and she had her dog with her and I was admiring her dog. So, as I sat back down to watch - I noticed Jack was on 3rd! Did he get a hit? I ask? Another Mom says "yeah, a double"! Holy Cow! Jack has been SO upset lately because he hasn't gotten a hit. So THIS is the secret - I just can't watch! :-)

And for another chapter in the Mabel story: Mabel finds a wasp nest. Up inside of our grill is a very small wasp nest - maybe even bee - I don't know - they don't really bother us but Mabel has found them and puts her nose right in the hole and howls at them. It is funny - as soon as any of them move she pulls her nose out and jumps. It's funny to watch.

I'm planning on going south this weekend to visit my sister and then ride with her to see her hubby - who I hear, is wheeling around in an electric wheel chair. (which is scary - knowing how he drives a vehicle). But I can't decide if I should take Mabel or not. I know she would LOVE to go running in the country again. We'll have to see.

Mabel Mabel Mabel

I swear I have to write a book about Mabel. "Mabel Goes To School" - now you're thinking I'm making that title up - Nope. You're thinking "well, she went over to the school yard and was playing with the kids". Nope. She got IN the grade school (before the kids got there) and was running through the halls. The janitor cornered her and called Animal Control. When I pick Mabel up from Animal Control (and I've done this MANY times) you can tell right away that she's there - there's this one lone howl... ughhh.

Mabel went to a birthday party last weekend. No, she wasn't invited and no, she didn't bring a gift. But she got a piece of pizza anyway.

Mabel visited the neighbor dog this morning (Scooter Pie - I added the pie). Scooter usually likes Mabel - they run back and forth in the back yard with the fence between them - BUT when Mabel squeezed UNDER the fence and was in Scooter Pie's face - well, then he didn't think too much of Mabel. She'll squeeze back under for a piece of bacon.

Mabel jumped over the railing of the deck today. Thought for sure she was going to hang herself - I grabbed the other end of the chain as fast as I could and when I leaned over the railing to see how she was - here she was looking up at me with that "what?" face she does so well.

Mabel likes to take George Monkey off of Sally's bed WHEN she's playing school with him and race to the living room with Sally in the chase SCREAMING at her.

Mabel likes to eat toothpaste and will stretch as high as she can to try and get the tube off the counter or even lick the counter if someone forgets to wipe up drips.

Mabel LOVES coffee and if someone forgets this and absentmindedly leaves their cup on the coffee table it will be gone when you come back.

Mabel loves to lay in the sun and is especially fond of the new deck furniture. She will find the smallest crack of sunlight, drag her cushion over to it and lay all curled up in it.

Mabel likes to wrestle and play "bite girl" with Jack. She plays "pinned" and when you let her up she jumps as high as she can and bites whatever is in the vicinity of her teeth. Usually one of Jack's fingers.

Mabel LOVES to chase birds and is very determined to catch one. She even watches them out the window and then howls till they either fly away or get out of her sight.

Mabel does just enough tricks just enough times to keep Daddy thinking she can stay.

SIGH!!!

Well, it's been a while huh? Life has been just a tad busy. We've seen the end of tax season, Easter holiday with family down "south", said goodbye to Rexie, produced and put together a 5th grade science project, went to the Little League opener (lost), attended Jr High open house - and lastly - but surely the BIGGEST - got through Sal's transition meeting!!!

Meeting was this morning. I was DREADING it! Thank GOD for my team from Salk. Dang, are they good. Mrs Legner asked questions and suggested things before I could even think. It's SO great to have her there. In these meetings I feel very overwhelmed and am usually just reeling with all the information put out and hardly have the sense to ask all the questions I have. Mrs Legner comes in and asks the very same questions I have and puts into my language what's going on. As a team we have decided that Sally will go into a cross cat class next year. She will still be with her "reg" classmates in PE and lunch but will be with children at her curriculum level for Lang Arts and Math. These classes are just like "reg" classes - in that they (the kids) switch every hour and such. So instead of going to biology or algebra class - Sal will go to Lang Arts in what they call a "cross cat" classroom. I really think things are going to go well. It's almost scary. In fact, on the way out of school Bill and I wondered if we had missed something because things went so smoothly.

I can't help but be in tears today. I think it's the combination of being so "up tight" about the meeting today and the fact that my tiny little 5.8 pound baby is now going into Jr High!!

At the open house last night they had a raffle and of course our little wishing wizard, Sally, won a back pack with Humphrey Jr High on it. She was SO proud (and Jack was So jealous).

Rexie the cat has been taken to Animal Control. She was really having a hard time lately with Mabel and took to putting "messes" all over the bathroom downstairs. Bill ran into an Animal Control lady last week and was talking to her about it and she said it would prob be best if Rexie found a new home AND she had just the home in mind. So on Sunday we said "see ya later, Rex." I was never a REAL big fan of Rexie, so I didn't have quite the goodbye of Sadie. :-)

Mabel has really turned a corner. She's getting much better. I think she's realized that she's next on the "pet evacuation" list. :-) I did happen to mention to her that I put down the very best dog in the whole wide world - I wouldn't bat an eye putting her down if she doesn't shape up. :-) (just kidding - don't go all PETA on me) :-)

Baseball began. Jack did well. He was angry that he never got on base. We tried to tell him that it's harder when someone your age is pitching to you. He did his usual Jack grumpus and walked away. Lord, give me strength.


Easter, where to begin. Bill, Jack and I (oh, and Mabel) started out Friday morning to Grandma's where we picked up Sally and proceeded to Aunt Jill's. "The Gang" then joined us that evening - Kennedy, Lincoln, Lex and Mad Dog along with parents - we all ate dinner and then colored eggs.


My Sister, the Egg Nazi, who usually only gets about 3 eggs per child - had 51/2 dozen eggs for us to color. Of course the children allowed them to sit in the dye for about 3 seconds and then proceeded to the next egg. So when they all went outside to play - *I* got to "re-dye" the one's that I wanted. :-)


It was a nice time. The "cousins" all play nicely - well, as nicely as maniac's. :-) They were upstairs, in the basement, outside - just all over being their crazy selves. The volume was such that when they went outside I thought I had gone deaf.


Mabel was in HEAVEN! She ran and ran and ran. Played with Tiny (the St Bernard) and Chunk (the Husky) and just smelled her brains out. She also got to meet her first cow. She stood on one side and the cows on the other and she barked and howled till they ran at her and then she took off and ran straight over and hid behind Tiny. My sister's house provides loads of entertainment without tv. :-)


So on Sunday the whole gang assembled again along with Aunt T and Mike's family and then Grandma and Grandpa. My Sister cooked up a storm as usual. She always side-steps the compliments on her food, saying it's no big deal. Well, it is to ME and granted we're not a picky family - but she really does a nice spread.

When we drove home on Monday, Sally AND Mabel slept!!!! Mabel slept the whole day and the whole night through. I couldn't figure out if she was so tired or depressed to have to be back on a chain again.

Through all this craziness I have managed to "kind of" keep up on the house. We had some major overhauling on Monday. Got a lot accomplished. So now we turn our eyes to Spring. I plan to get out summer clothes next Monday AND take a trip to Humphrey to sit in on a cross cat class. I'm really hoping next year goes as well as this year did. I can't imagine saying goodbye to my team (all of them). Jonas Salk has been a FANTASTIC place for Sal. It's so VERY hard to say good-bye.

There are some CRAZY things to report. The first being that Uncle Mike (my sister's husband) is in the hospital and very well may be paralyzed from the arms down. He fell off a ladder on Wednesday night and was air lifted to the hospital. They operated and removed some discs in his spine and replaced them with a plate. But there is a LOT of bruising on the spine and this is the issue of whether he will walk or not.

My sister is something. I think I would have collapsed by now. When it all was first happening she said she thought about me and all the decisions I had to make about Sally and understood. The only thing is - I don't decide about a "do not resuscitate" issue, or life changing things!!!!

I've asked a dozen times if I should go down and she's said "there's nothing for you to do". Well, I hadn't planned on DOING anything - but just "being there". :-) We decided it best for me to wait till he comes home - when she'll need to be a nurse - and then go down and stay with them just to make sure she doesn't kill him. :-) Like me, she is NOT a nurse. :-)

I wonder if that says more about us than we realize that maybe we see our spouses as so much a part of us and that we don't really nurse or nurture ourselves that we don't for them - almost a self-loathing thing? I don't know - too early for Freud today.

I guess I've never really got bad news on the phone before - I mean out of the blue bad news. All the time she was telling me what happened and what was going on I kept thinking "well, when is she going to say "April Fool" - enough already - this CAN'T be right - she's pulling my leg, right" But she wasn't - it really happened. It's just CRAZY how your life can turn upside down in one instant. People say that about death - but this is almost worse.

In the meantime we had a "mapping meeting" about Sally - in which she got to attend. We (the team from JES and Humphrey) discussed what she needed from us, as parents and them as teachers to have a good year next year, be prepared for HS and to eventually participate in the real world.

Sally was funny. I don't' think she really got it and I wouldn't advise that we include her again - but she did get to see what we do monthly and what "meetings" were like. Every time someone said her name she'd quietly point to herself and say "that's me". :-)

The little sooth sayer told me (after I got off the phone with my sister the first time) that Uncle Mike would be in the hospital for 3 weeks. After all that's happened - it looks like that is just about right. How does she DO that????

Jack has been playing ball and not doing too well at the plate. Mostly it's because of lack of practice. He needs to be pitched to by a kid - not a coach, not a machine - a kid - just like in the game and he needs to do it over and over and over. The pitching at this age is horrible and I don't want him to get into bad habits of taking anything that's thrown at him - but tell the coach that. :-/ Coach also tells them to "smack the ball" - I could just kick him for that. ANY contact with the ball would probably produce a base hit. WHY do we make bad habits just to WIN?? Ugghhh - don't get me started.

Last night Jacob (Sal's friend) and wanted to know if we had seen Tory (another of Sal's friends) - that he was "lost". No, we hadn't seen him. At 3 a.m. the Bbk Police called and asked if we had seen him - he had gotten into a fight with his Mom and was still missing - they were calling all the kids in his class. It was WAY hard to sleep after that!!! Jacob just came by and they had found Tory over at the library - he was waiting for it to open! Thank God he's ok!

Jack plays ball again today - and then I promised him and I could play pitch and catch and practice batting. I love to play pitch and catch.

Some other things that have been happening is that Sal won 2nd place in the Softball Throw in Special Olympics last weekend! She was SO excited! She also placed 4th in the 100 meter run.

My Sister, THE Star

My sister starred in the play "The Kitchen Witches" for the Windmill Follies this year. I got to see the final performance (it runs for 3 weekends). It was REALLY good! It is SO funny and SO my sister. She plays the part of Dolly Biddle and has to do a Ukrainian and a Southern accent. She was very good.

I took Sal down to my Mom and Dad's so she can spend Spring Break with them and then her and I went to the play that night. It is done with dinner. So you eat your salad - watch act 1 eat your roast beef, potatoes and gravy, green beans and roll - see act 2 and then eat your desert and see act 3. It was about 3 1/2 long - Sal sat through the whole thing and really got into it. She laughed when they through flour and salt around the stage and when Debbie called Aunt Jill a turkey she looked back and me and said giggling "Aunt Jill's a turkey." But when Aunt Jill's character has to go to the hospital Sal was a little tense and I had to remind her that it was only a story - that Aunt Jill and Debbie were pretending.

On the way to the car she said "that was fun. Ask me if I had a good time."

"Did you have a good time, Sal?"

"yes. Ask me what my favorite part was."

"What was your favorite part, Sal?"

"The second one."

I think she was talking about when Aunt Jill came out in a Scarlet O'Hara dress and hat complete with fan.

Sally was not too pleased with the gravy. She kind of wrinkled her nose and said "it's not Aunt Jill's." :-)

So I drove home by myself today. Almost 4 hours of radio that *I* wanted and at a volume that suited *me* and NO talking and NO listening. I thought about making a run for the Indiana border. :-)

So we go back to work tomorrow. The house is very different. No Sadie, no Sally. It's like pieces of me are missing. I am glad I listened to Taloola this weekend and did something for me. That play was really good and it felt good to laugh.

It Is Finished

"Godspeed, dear friend - you will be sorely missed." I can't believe my little Sader tader, rotten tomater is gone. Bill and I held her and cried. It was peaceful - she just slept away.

My eyes are huge and swollen. I feel a little like I'm lost in a fog. Sade seemed to know - her eyes were wide when I started to cry. All the way to the end she seemed to care about what my feelings were. That was Sade - she was always so caring. Even as a puppy she was never one to be so "me, me, me" That sounds stupid - but really, Sadie was an old soul from the beginning.

On a lighter note - I was stopped in the school hallway this morning by Mrs B - one of the second grade teachers - "are you Jack's Mom?" I'm never really sure how to answer this question. :-) "I'm teaching Science to his class this semester and I just wanted you to know he's the nicest little boy, he's a real joy to teach."

I said "Um, I'm Jack DAVIDEK'S Mom - there must be two Jacks." :-)

"no, no, there's only one Jack" and she laughed. (boy, ain't that the truth.)

"Well, the boy you describe is a lot different from the boy who gets out of my car every morning" I said "but I'm glad to hear he's behaving himself in school."

She smiled and said "oh, yes, they're all different at school - but Jack is really a helpful child and so good natured."

That was nice to hear. Jack's report card was good too. He brought up his subtraction . His teacher had some nice comments too, about him being such a nice kid with a good heart. But yet the kids here around the house - they pick on him all the time and he comes home in tears. Go figure.

Whine Alert

Ok - I'm whiny. Sal and I attended the meeting for the "Outdoor Learning" field trip that school offers last night. About 5 minutes into it I realized there was really no way for Sal to participate in this. I had planned to go and help her - but there was a LOT of things that would be upsetting to her. 1. Sleeping with others - unless, of course the others don't care to sleep -then she's ok. 2. Being outside in ANY weather - she would NOT be ok about this. I swear she's part cat - any rain and she's inside. 3. No familial items from home. 'Nough said. 4. We still have bathroom issues and she would basically be in a "dorm style" shower situation. So I really think it's best that she not go. The whiny part comes in when I start to look around the room and become jealous.

This kind of thing happened a lot when we were first aware of Sal's limitations - I would sit and look at parents and almost become resentful. That has subsided a LOT - but last night it came raging in. I was angry that I couldn't just sit there - take notes - pack and bag and send my kid on her way. I resigned myself to wait for Jack's turn.

So yesterday was April Fool's day - I served Jack his cereal with a fork in the bowl. When he pulled it out and realized I presented him with a spoon and cried April Fool! :-) He seemed to be pleased. I also packed their snack for daycare with little bags of goodies - BUT I carefully opened them first, took out the stuff that the bag SAID was in there and replaced it with something else and a note that said "April Fool".

When I picked them up I asked how their snack was. Sally said "you trick me". :-) Jack had NO idea what we were talking about - he had thrown his away without even opening it!!!! What a goob! I think we taught him not to do that again - he was a little upset that he wasn't "in" on the joke.

We had Sadie's birthday party last night. She turned 17 yesterday! :-) She got a Happy Meal (she shared her fries) and Taloola had picked up a dog ice-cream baked good from the "Dog Bakery". The kids loved singing happy birthday and having the candle and all. :-) I am NOT looking forward to tomorrow. :-/

Sal and I will be trucking south on Saturday. I'm going to drop Sally off at Grandma and Grandpa's so she can spend Spring Break there and while I'm there I will be able to see my sister in her play. She's the "star" - the director said so on the radio. :-) I think it's called "The Kitchen Witches" or something like that. I'm pretty excited to see her. We saw her in her thing last year - she's really quite good at the acting.

I'm an author!!! That's right - I'm going to be published! :-) Project Choices asked Valley View for a parent to write a letter on their child's "inclusion" experience and guess who they chose. :-) So anyway - after I wrote it I got an email saying how Project Choices wanted to publish it in their brochure and would I sign a form saying they could and also send a picture of Sally. So there you go. I can now put on my tombstone "she was a published author." :-) hee hee

And the last thing I'm going to whine about - Obama - I'm ticked that he's using MY name that *I* gave MY truck for his. "Beast". I KNEW I should have copyrighted it when I started calling my big red truck "Beast". :-)

Baseball and bowling tonight and then try and get enough clean clothes done to fill Sal's suit case to go to Grandma's. I'm looking forward to a break for a week. Of course we'll still have Jack...... sometimes it's a toss up as to who is the hardest.
:-)

It is Done.

I made *the* appointment to put my dear friend, Sadie down. I feel like a weasel. How do you "schedule" death? Damn. My head KNOWS it's right. But my heart just aches. Sadie hasn't been Sadie for a while. She hates being touched because of all the moles/warts on her. She can't see well, she doesn't hear almost at all, she's doing her business in the house and seems to not even know she's doing it.

Even at age 17 she's the BEST dog there EVER was - there EVER will be. We were married only a year before we got her. She was so cute - just 3 months old - she NEVER messed on the floor and only chewed a couple of shoes.

And then there's Mabel. OH Mabel! She is MORE than a handful! She sits in the window and howls because she can't go out. She's almost the opposite of Sade. And that's probably a good thing. I'll need that menace to get through the next weekend.

Bill and Taloola have offered to go but *I* need to be there - I want to be the last person she sees. She's always been there for me - now it's my turn. We told Jack about what was coming and he pleaded that we wait till after April 1 so she "could have one last birthday with us". :-) Gotta love Jack.

A Day ALREADY!

In our house you kind of have to hit the ground running, at least you have to hit the ground dealing with Sally. :-) This morning she flipped on my overhead light (I HATE that) and told me that she was sorry for hitting my car. What????? Well, when it all came out - she had hit my car with the plastic bin of garbage. Ok, so your heart recovers. Then she reported to me that Mabel was gone. Sally had seen her (Mabel) knock the front door open and then escape. Well, what's new. I figured someone would call.

I'm in the kitchen getting coffee and Scooter Pie(I added the pie part) is in his yard just going nutso barking. I figure Rexie is out there and he's trying to figure out how to scale the fence to get at her. But no, Rexie is on the table waiting to be fed. As I walk out to the back deck I see a HUGE possum waddling out from under the shed. I called the kids and we all went out and watched him take his sweet time trudging up the hill and out the side gate. But then he stopped. Guess who comes barreling over him? MABEL! Oh, Lord, love a duck. Just when Scooter Pie had settled down, Mabel comes charging in and makes the Possum retreat to the corner of the yard again. I do believe he either scratched or bit her enough to make her "get it" because I heard a little howl and she (Mabel) took off out of the yard again. We all headed back into the kitchen.

As we're making breakfast there's a knock at the door. I figure it's the delivery guys (my washer/dryer is due today) or someone with Mabel. It's the lady on the other block who tells us that yes, she had Mabel in her back yard and she's on her way to work. So the kids and I jump in the car and go to get Mabel. When we finally find the house there is no gate that I can see for her to come out of. Sooooo I got her to put her paws up the fence, grabbed her by the scruff of the neck and hauled her butt over the fence. Only then do I see the mud that she's COVERED in and now *I'm* covered in it. Oy. But I get her back to the car (where she spreads the mud) and try to contain her to the front seat. We get home, put her out on her chain and return to making breakfast. There's a knock on the door again. The delivery guys are here with the Washer/Dryer.

I went out to the driveway and was signing all the stuff when the guy says to me "We're not too early, are we." And as I was saying "oh no, we're up, don't worry." It dawns on me he had not really *asked* that as more *said* that. As I look down at my jacket - I'm COVERED in mud. So he's thinking - boy - you all need that washer NOW! :-) I had to laugh. He was a really nice guy and the kids got to watch him and the other guy use that thing on TV where you place the strap under the real heavy thing and you can lift it. It's pretty cool, actually.

Jack has been begging to play Clue, since last night and so I had told him that if he was all ready to go I would play before school. So as Sally got her backpack together, Jack and I played Clue. After I dropped them off at school I was thinking. Most people are just *starting* their day. Mine is really just winding down!!!!! So all is well. Mabel is in her house, Sadie is in my closet (her own little "house"), Rex is sleeping on the fireplace, the washer/dryer is in the garage awaiting Bill to hook it up, the kids are safe at school, and I've go the coffee made and files pulled to do payroll today. It's a wonderful life. :-) But a little like the Army "we do more before 9:00 than most people do all day". :-)

Things are Crazy

The house is up for grabs again. You know when everything in your life just seems so out of control and you feel overwhelmed? I call this "when the inmates start to run the asylum". The weekend was a doozy. We had the usual swim lessons and then the usual laundry and clean up (because Mom is working 5 days a week now and the piglets aren't picking up after themselves). Saturday night (after a day of kids running in and out and Mabel and her usual howling craziness when anyone leaves) my washing machine broke. I have a font loader and honestly have never really liked it and I think it took offense to that. After putting in a load (and a rather light load at that) the clothes (namely a towel) somehow got wrapped around the gasket that seals the door and wrapped so tightly over and over that it blew the door open. Not sure what it says about us - but we didn't even notice the noise. ;-)


So the washer sits - mostly full of water (as full as those front loaders get) with the gasket hanging out and a wire sticking out. Bill got up early on Sunday morning and went "shopping" for a stackable set. We have a "sub-basement" meaning that half the wall is underground and that half wall is concrete. So the dryer vent (and all other things) come into the house ABOVE this wall - thus making the vent have to do a hike UP the wall and out - we've always had problems with the vent. So with the stackable it now goes straight out.


One problem - they can't get the thing till Wednesday. ugghh. And of course, it has to be on the week that I have the motherload of all laundry. You know, sheets, blankets, the whole 9 yards. Just puts me SOOOO in a fowl mood. I have to say my kids get their patience or lack of it from me sometimes.


Bill got to really "download" with a couple from his childhood who he helped with a snow blower. I've always thought he needed a "Taloola" :-) It was nice to hear him explain how good it felt to have someone "really" listen about Sally.


Sally - Oh my. I can't believe I really CRIED thinking that child would never speak. One must really be careful what one prays for. If I would have taped her mouth shut this weekend I do believe the top of her head would have blown off. :-) As I was running her bathwater Saturday night I asked Bill "is it wrong to want to drown her?" :-) I know it's because of other stresses that my patience with her is down. Not her fault she has a lot to tell me when I'm consumed about getting crap done. :-)


The thing with Sal is that she's always thinking ahead. It's like being with a nagging blackberry. Always chirping about what's coming up when and what you have to do in the future and it's all I can do to make it through the time being. :-) We did broach the subject of putting Sadie dog down this weekend. Sal seemed fine about it when she was told that Sade would be going to heaven. Sally has a thing about heaven and Jesus and God. It's like she's been there before - like she's got a relationship with them that goes beyond spiritual. Heaven is not abstract to her and neither are the heavenly beings. She's very matter of fact like about it. And it's not anything she's been taught. I'm serious when I say it's like she's been there before and has a working memory of it.


It's all I can do to think about it without crying. I know it's for the best. Sade doesn't really like to be touched except the head and ears anymore, she's loosing control of her bodily functions and she's both blind and deaf. Mabel plays so rough with her and God bless Sade - she gives it back - but you can tell it's getting harder and harder for her to rebound. Plus, I don't think she's eating as much as she used to. She'll be 17 in April. She has been the BEST dog to EVER walk the planet. She's seen Bill and I both through some crazy ass times. We got her the year after we got married and I remember wondering what we ever did before she was around. ;-)

Jack Jack

Well, Jack has been at it again. I have discovered a stash of photo-copied "Crusader Cash". At school they give slips of paper (a little bigger than a dollar) for doing good things. Caught being good is a big thing at school and if you save these "dollars" you can buy things at the office. Some things are pretty cool - like lunch with the principal or a basketball game with the Assist Principal. Some classes have even saved up - putting theirs together to get extra recess time. Anyway - seems Jack has been trying to "re-create" these "dollars". I foresee prison in his future. He'll be counterfeiting 20s. Lord, help me.

Another thing I found out he had a police officer at school. The way I found out was that he told the cashier at the grocery store. So all those times I asked what happened at school and got "nothing" - well, seems *I* didn't count much. He was ALL talky to the cashier! So anyway, I asked if he had told the officer that his cousin Bob was in training to be a cop. "No, I was going to - but I couldn't remember his last name - oh, yeah - it's Dave Davidek, right?"

No, that would be the Bob's brother - Dave (Jack has always thought my brother had two sons named Dave) and his last name would be Beckett. :-) Oh, this boy......

And now the tearful part: Jack reported that they have been learning at school about what to do if a gunman comes in. It breaks my hear that he has to learn this - that the innocence of being safe somewhere is taken away. But I have to admit - Jack seemed to take it in stride. I commend Mrs Sievert for that. I think she handled it very well. Jack seemed to know all about the instructions of what to do - but had no drama or freakiness about it. And get this - he even went so far as to ask about what to do if he was in the bathroom (the boy spends a good part of his life messing around in the bathroom). After he was told that ONLY *IF* there was this problem that he was to lock the stall door and stand on the toilet. He then asked wouldn't the gunman know that if the door was locked that someone was in there even if he couldn't see their shoes. I was impressed that he had *that* much forethought. And then I started crying because my baby is having to think about being hunted. Just what are we doing to our kids????

I caught Sally (ok, so the whole neighborhood could *hear*) singing today and asked her where she heard that song. "From my mouth" was the answer with that look of "duhhh". I really think *I'm* the handicapped one sometimes. :-) Sally is also having a hard time with Mabel and asked if I "would speak to her about biting". :-)

And on THAT note. Sal had social club yesterday. She came home with a bite mark on her hand! The counselors had told Bill when he picked her up that Sal had got bit and really had not provoked it. So, when she got home I asked her about it. Yes, Brandon had done it and yes, he was her friend - but he had done it because he isn't a very nice boy. But he is still her friend. :-)
I guess she didn't even cry. I think she knows that sometimes things like that happen.

And back to Jack: I had one of the spec ed teachers ask me to stop in to school to talk about Jack. Talk about LOADED statement! So I ran through EVERY horrible thing the boy could have done. When I arrived she started telling me about a little boy in his class who has spec needs and is "self stimulating" (if you get my drift) lately. I guess he grabbed Jack's crotch. They put a stop to it immediately and after talking to Jack - he didn't feel it was his crotch but his leg the boy grabbed. Anyway - the teachers and aides made sure the boy knew that he was to keep in his own space and they wanted me to talk to Jack about how no one should be touching him anywhere. So we did. I was kind of proud that Jack didn't make a big deal of it and embarrass the other boy. Again, Jack knows how Sal has "space" issues too and probably was giving the child a break. But it was a good chance to bring up again the fact that it's ok to tell someone not to touch you. So afterwards the teacher saw the look in my face and said "I probably scared you, didn't I?" Yeah, I had the boy in military school already. :-) She seems to think Jack is very smart. I love him dearly - but I don't see smart. :-) Sneaky, conniving, that I see. :-) So it's been a week, let me tell ya.

I can hardly wait to see what's in store for next week. :-)

The Boy

Jack was in trouble last night. He had taken the wii controller to a friend's house after being told not to. He did the whole sneak thing and Sally told on him. :-) In his lecture, Bill tried to explain that what Jack did was actually stealing.

"Like, say you took a banana for instance." said Bill

"I wouldn't - because I don't like bananas." Jack interrupted.

Can you imagine how hard it was not to laugh out loud? :-) I just LOVE when Jack does stuff like that to Bill, because it's usually Bill doing this to me. :-)

We hit the library yesterday to get the book "I May Be Wong, But I Doubt It" by Charles Barkley. Sally has a report due on Thursday for Black History. I'm afraid I'm really having a hard time making "Sir Charles" a historical figure. He's in the news just recently for a DUI. So tell me how I spin *that*. I do hope I get a good grade. :-)

Sal had a ball at the library. She's like me - that whole huge expanse of books is just such a great feeling.

Well, off to work - to a nice quiet office where things stay in their place. "Just like heaven."

Oh, the Fun!

Sally had her last basketball game this weekend (unless her and I go to State). Mrs L and Mrs B attended and Sally just LIT up when she saw them!!!! When and if you talk about public school teachers - come sit by me and let me tell you how WRONG you are!!!





Sal has picked Charles Barkley as her Black History project and though I'm very sure "Sir" Charles is a lovely human being in person - I'm not finding all that much that *I* find historical about him. I mean, he's a lot like most of us - didn't make his HS team and fought back plus fought his weight and stature all his life. But he, himself, said that sports players should not be role models and I have to agree with him.





I found he has spit on people (not that they didn't deserve it ) and I'm not sure THAT's a real piece of history. He only went to college for 3 years. Again - not the best influence for a report. Just recently he rec'd a DUI and has announced that he will run for Governor of Alabama in 2014. Now IF he does become Governor - I do believe he will be the first African American to hold that office in Alabama. But other than than - I'm really not finding the big historical making stuff say like Harriet Tubman, Eli Whitney, Malcolm, heck even Harry Bontifelli. So, I'm not sure what Sal's going to speak on. Maybe we'll have to speak on the fact that we all make history, even in our bad behavior. ????





Jack is having some difficulty in school lately - nothing major - just some sliding grades and I think he's 1. rushing 2. pre-occupied and 3. lazy. So Daddy and I are going to nip that in the bud as best as we can starting tonight. He's not thrilled - but we explained that school is #1 and if he's needing a little help wrestling needs to come AFTER we get some practice done.



Day off today - it started at 5:45 a.m. Ugghhh. Why doesn't Sal get the meaning of "sleeping in?"

Autism and advocacy: are parents always right?
Monday February 16, 2009
Just to get my week going with a bang, I thought I'd blog a bit about a subject that's been under my skin for quite a while. That is - the assumption by so many parents that mom and dad, because they ARE mom and dad, must know exactly what their child with autism needs. Not just in the ordinary way ("when Johnny sounds like that, it means he's hungry"), or even in the "mommy ears" way ("it's too quiet up there") but in a mystical way that's far beyond all ordinary powers of knowing.
Apparently, there are moms and dads out there who magically know that their child with autism needs biomedical intervention X, will only thrive after treatment from therapist Y, or must receive services in a particular setting with specialized equipment provided at great expense through agency Z. Their child receives these treatments or services and - only six months or a year later - develops extraordinary new abilities.
As a mom, I do know when my kids have been stressed too much. I can see a meltdown coming a mile away. And I can make a good guess when a topic or activity will be of special interest. I know what foods my kids like, and when they're too tired to do a good job with school work.
But over and over again, I'm surprised by my kids. And that's a GOOD thing!
I was surprised when I found that my son actually WAS willing and able to pick up a paintbrush and help to paint the set for the local production of Pirates of Penzance. I was amazed when he decided, based on the promise of a prize, to bowl one-handed through three entire games. I was impressed when he had an eye-opening conversation with his speech therapist - and shared things I'd never heard before.
Most importantly, I've been taken unawares by sudden developmental leaps. Suddenly, a boy who had never asked a question is wondering aloud why his sister seems so sad. Or where his toy frog has gone. Or whether we'll see his grandparents soon. Had I been right in the middle of trying a new therapy, I would have assumed that it was the therapy that made all the difference. But lucky for me, I've backed off on the therapies. And so, when Tom makes leaps, I know to whom the credit is due. It's due to... Tom.
Over the years, I've learned that there are many things a parent of a child with autism can and should advocate for. A solid academic education. Appropriate supports in school and in the community. Funding for treatments, education, respite, and adult care.
But when parents assume they're always right, I've found, limits are placed on the child, the therapists, and the possibilities. If only Dr. X can make a difference, Dr. Y never gets a chance to try. If only setting A is right, we'll never know if setting B could have been better. And if no one but mom and dad get to make choices for a child with autism, the child himself never gets to see what he can do on his own.



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HOLY COW!!!! FINALLY A VOICE OF REASON!!!! Are we all listening??? Helllooooo??? All of you who are SO sure you know exactly HOW things should go and are SO certain that ______ (name the institution) is out to get you???????? This kind of logic goes to vaccines being the reason for ALL autistics - also goes out to Jenny M who is SO sure her child is *cured* now due to ________ (fill in whatever the newest thing coming down the pipe).



I've found there are TONS of variables - her mood, her development, the chemistry between her and whoever, (and sometimes SHE likes them and *I* don't and vice versa) , the time of day, week, year - you name it. I've resigned myself to the feeling that "the teacher comes when the student is ready" and to look at things with love, grace and common sense. I've also learned that it's OK to be #2 (or 3 or 4 or whatever) And the newest thing I'm trying very hard to teach Sal is it's OK - in fact preferable NOT to be perfect. To "go with the flow". That if someone makes a comment - that it's ok to not listen (that is - as long as they are not your teacher, aide, or parent) :-)



No, parents DON'T know everything - in fact, I've found that I know very little sometimes. One thing I have realized is that I DO know SOME "habits" of hers. And this fascinates Sal. I know when she has to use the bathroom and she always asks (as she's sitting on the potty) "How you know?" But aside from that - I know VERY little. Her and I are connected and there's times I get a little "tingle feeling" and find out later that something happened. I SO wish I could know what goes on in her head. Like for instance - why was she a monster yesterday at school? What made her not want to comply. Was it a specific thing? Or was it an independence thing?

Where's the owner's manual?

It's been a while

In my defense, I have neglected my blog duties because the Oct 97 list has been migrating to facebook. So blame them. I've caught up with the girls who have been missing in action. Like, Laura - who I had no idea has chickens - real live chickens. :-)



Plus, for as good as Sal was as a baby - slept MOST of the time. Well, not so much anymore. She's really coming into the "talk back" "I know it all" "big fat boss" kind of kid. She's always demanding something, or talking back, or correcting or just in general being a regular pain in the arse. And then there's Jack. Who has ALWAYS been a pain. Thank God he's cute and at intervals really makes your heart melt because otherwise you'd kill the boy.



So life has been "sticky" for a while. There has been some good stuff. Sally met for #2 track practice yesterday and we were told she's VERY good at softball through and 50 meter. *I* thought she'd be good at running. Even though she's a chub she really has a nice, smooth, stride. Definitely NOT like her Mom. :-)



I've also noticed some things.: Dealing with Special Needs children - I REALLY hate to say it - but Jenny McCarthy is right about men detaching and woman over indulging. Ok, I admit she was right about one TINY thing - but otherwise - she's an idiot. :-)



Bill is running for School Board. He has some really great ideas and I realized last night that this is *his* way of *helping* Sally. Men help in ways that kind of take them away from the "dirty work". And that's not a bad thing - just different. Me - well, I don't even think of things that *I* want to do - oh, sure - there's the thought of an hour quiet time with NOTHING to do - no children no hub no laundry - that kind of thought - but as far as career or future goals - well, just getting her independent, surviving long enough to make sure she's ok and then trying to prepare her for me to be gone. Makes me tired just thinking about it.

The house is still crazy - Mabel is still alive, for the time being. She has taken to chewing shoes - and the thing that really corks me is that she gets them OUT of my shoe rack!!!! I've always let her slide on chewing things because - well, we don't pick things up well enough and she finds a LOT of things lying around. BUT - today she took the cake. I have a pair of old blue shoes that I haven't gotten around to throwing out yet - they are laying on the floor in the dining room. She took the brand NEW shoes (bought yesterday) out of my shoe rack and chewed them. I tried to explain to her that ruining shoes is the surest way for me to take her to Uncle Tim's farm and SOON! (Uncle Tim owns a gun) :-)

We refinanced today. When we got to closing we were informed that the bank that bought our mortgage stopped taking notes today. We're praying we disperse. Mr Dan didn't seem to be too worried - so we won't either. :-)

We have our last basketball game on Saturday. Sal's looking forward to it. I'm in the process of looking into getting Gma and Gpa to see a game at state. The only thing is that means ALL of us in a motel room. You know how Sal doesn't do quiet on command - I've slept with her when she was sick and it gets very much like a Bugs Bunny cartoon : "I be quiet" " I no talk" " I be quiet for you?" over and over and over. Till, just like Yosemite Sam you want to yell: "Shut up, shuttin up"!!!! So, we shall see how that goes.

We found out some friends have been laid off today. Makes my stomach hurt to hear of people in such dire straights. And the worst thing is there is so little hope. Bill and I are truly lucky to not loose our jobs.

Just a Little FYI

Parents of children with autism quickly become authorities on the subject. But what about in-laws, teachers, coaches, and cousins? Few people outside the immediate family really want to read 20 closely-written pages from the National Institutes of Health. This brief, pithy article provides the bare bones basics for a quick read - along with links to more in-depth information for those who want to know.

1. Autism Is a 'Spectrum' DisorderPeople with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal, and autistic as well as mentally retarded, non-verbal and autistic. A disorder that includes such a broad range of symptoms is often called a spectrum disorder; hence the term "autism spectrum disorder." The most significant shared symptom is difficulty with social communication (eye contact, conversation, taking another's perspective, etc.).

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2. Asperger Syndrome is a High Functioning Form of AutismAsperger Syndrome (AS) is considered to be a part of the autism spectrum. The only significant difference between AS and High Functioning Autism is that people with AS usually develop speech right on time while people with autism usually have speech delays. People with AS are generally very bright and verbal, but have significant social deficits (which is why AS has earned the nickname "Geek Syndrome").

3. People With Autism Are Different from One AnotherIf you've seen Rainman or a TV show about autism, you may think you know what autism "looks like." In fact, though, when you've met one person with with autism you've met ONE person with autism. Some people with autism are chatty; others are silent. Many have sensory issues, gastrointestinal problems, sleep difficulties and other medical problems. Others may have social-communication delays - and that's it.

4. There Are Dozens of Treatments for Autism - But No 'Cure'So far as medical science is aware, there is at present no cure for autism. That's not to say that people with autism don't improve, because many improve radically. But even when people with autism increase their skills, they are still autistic, which means they think and perceive differently from most people. Children with autism may receive many types of treatments. Treatments may be biomedical, sensory, behavioral, developmental or even arts-based. Depending upon the child, certain treatments will be more successful than others.

5. There Are Many Theories on the Cause of Autism, But No ConsensusYou may have seen or heard news stories about possible causes of autism. Theories range from mercury in infant vaccines to genetics to the age of the parents to almost everything else. At present, most researchers think autism is caused by a combination of genetic and environmental factors - and it's quite possible that different people's symptoms have different causes.

6. People Don't Grow Out of Autism Autism is a lifelong diagnosis. For some people, often (but not always) those who receive intensive early intervention, symptoms may decrease radically. People with autism can also learn coping skills to help them manage their difficulties and even build on their unique strengths. But a person with autism will probably be autistic throughout their lives.

7. Families Coping with Autism Need Help and SupportEven "high functioning" autism is challenging for parents. "Low functioning" autism can be overwhelming to the entire family. Families may be under a great deal of stress, and they need all the non-judgemental help they can get from friends, extended family, and service providers. Respite care (someone else taking care of the person with autism while other family members take a break) can be a marriage and/or family-saver!

8. There's No 'Best School' for a Child with AutismYou may have heard of a wonderful "autism school," or read of a child doing amazingly well in a particular type of classroom setting. While any given setting may be perfect for any given child, every child with autism has unique needs. Even in an ideal world, "including" a child with autism in a typical class may not be the best choice. Decisions about autistic education are generally made by a team made up of parents, teachers, administrators and therapists who know the child well.

9. There Are Many Unfounded Myths About AutismThe media is full of stories about autism, and many of those stories are less than accurate. For example, you may have heard that people with autism are cold and unfeeling, or that people with autism never marry or hold productive jobs. Since every person with autism is different, however, such "always" and "never" statements simply don't hold water. To understand a person with autism, it's a good idea to spend some time getting to know him or her - personally!

10. Autistic People Have Many Strengths and AbilitiesIt may seem that autism is a wholly negative diagnosis. But almost everyone on the autism spectrum has a great to deal to offer the world. People with autism are among the most forthright, non-judgemental, passionate people you'll ever meet. They are also ideal candidates for many types of careers.

Special Olympics weekend

Sal was better on Friday night and begged to go to basketball on Saturday. We got up at insane o'clock and got to Oak Lawn by 7:30 a.m. As they started to warm up Sal started crying. The coaches weren't there and a parent had taken over at the basket and had evidently said something to Sal. Ohhhhh - we WILL have words about *that*. So when the coaches walked in Sal was ALL smiles. We lost the first game by one point. God, they played well! The other team had absolutely no visible handicaps - nothing like our team - but we stayed within 2 points of them the whole game!



The second game wasn't as close and it was a team we had beaten before. I think we were all tired and just not into playing. Our guys are so much more physically handicapped then a lot of teams - but they did well, really well.



Our last game was at 11:30 and then we headed home. Because there aren't enough teams from this area - our team has been invited to the Special Olympics in Bloomington in March. Bill and I are both vacillating on if we want to go or not.



Saturday night Bill and Sal went out to a daddy/daughter dance. We had to talk pretty hard to get Sal into a nice pair of slacks and shirt and then I put her necklace on that she got from Susie in remembrance of "her" Sally. But she looked SO nice. She even let me curl her hair. Bill said they had a really nice time and Sally danced with him and had a great time. Plus her buddy Liv was there with Uncle Eric. So she had a really fun evening.

Jack - not so much. Man, he's a booger sometimes. I realize now we should have planned something for me and him to do - like a movie or something. But that boy sure can suck the fun right out of life. He'll be lucky to live till his next birthday, the way he's going lately.

Autism comes RAGING in!

I forget. No, I don't forget - how could I forget - but I seem to go on auto-pilot and take too much stuff at face value. After some investigation last night I have a new understanding of Sal's toilet habits. The new info is what STARTS the problem - and that is neurologically, her muscles have problems with elimination - which in turn makes a painful experience in the bathroom which THEN starts the whole cycle. Dr never talked about the BRAIN part. Soooooooooo, taking her off the meds when "things" were working was BAD. So we have a pretty big problem to fix. At least I know once we get this last episode over with we need to ALWAYS give the meds. It's not a question of not wanting to go with her - at first - it's the brain. And I guess the thing that ticks me off is that I should have realized this before. Sal is the most ALL-AROUND eater I know. She loves vegetables, she doesn't eat THAT much junk, really - not like the boy -It always puzzled me why this kept happening to her. So NOW I have the answer. That going back in time stuff would be WONDERFUL, huh? ;-)

So little Miss Sal is home with Daddy again. Talking to Gma and Gpa this morning Gpa told me that he was going to call DCFS because he had heard that I was "always ruining lives" ;-) That Jack provides more entertainment for my family. They had had heard from Jackie who really enjoyed the basketball game. (Sal's)

Sal plays tomorrow in a tourney at "insane o'clock" and I'm hoping she can participate in it. It's the starting of the Spec Olympics and the team who does well here then moves up and I'd like her to be part of that. Plus, when one is missing the others are anxious about it - even if that one doesn't do anything but "screen". :-) Not to mention that the physical activity will help our whole problem also.

One thing that was recommended to me by one of my Autism moms was to start the day with something warm with the meds. It seems to "wake up" the bowels. The only thing is - Sal doesn't care for warm things. Maybe it's time for us to have a "tea party" in the morning. :-)
I think even Jack would go for that - as long as it include waffles. That seems to be his staple food lately.

Jack Jack is doing well not being in the spotlight since Sal's sick. I got to see him in action on Tuesday - it was Muffins for Moms at school and after consuming our obligatory muffin the kids escorted us to their rooms. Jack immediately took up with M (who is similar to Sal) and I got to see how well he treats M. I was SO proud of him and very touched. Mrs G confided that Jack is the ring leader of the room and makes sure the M is seen to. We've had several kids who have helped Sal along the way: Q, B, and now D and it's so nice to see Jack respond in kind. I know much those kids mean to me that help Sal and I think M's mom feels that way about Jack. She knew him by name and chatted with him and M before she left. So when the boy lands in jail for doing some ridiculous thing I need to remind myself of the time that he was an asset to the community. :-)

No School For Her

Oh, Sal was upset this morning. She seems to be "bound up" and just "not right" since last night and I decided that since Dad was home with pulled muscle that she should stay too. She was a *little* upset but soon was over it and that reinforced my opinion that she's just not well. If she was, she would have fought me tooth and nail.

So I left her in Daddy's care this morning, which she wasn't *too* sure about and gave me that "I'll try and be brave look" that she's so good at and Jack told me,"Mom, she doesn't want you to leave." He seems to have a *little* intuition also - but he, as most men totally ignores it usually. ;-)

Bill went to his "lotto" meeting last night and rec'd #5 (out of 10) on the ballot. He obviously didn't talk to Sal the wishing wizard beforehand. :-) His head was spinning when he got home about all the new info he had rec'd.

Sometimes I have to laugh

Last night as Jack was in the tub - Mabel overturned the dirty clothes hamper. As I set it back up I said weakly "Mabel, Mabel, Mabel"

Jack says "I know, you hate her don't you?"

"No honey, I don't hate her, she just drives me crazy sometimes, I always have to make sure she's not doing something naughty."

"Yeah, she's just like Sally."

I went into the bathroom to see him eye to eye when he explained how Mabel was like Sally because really Mabel is a four footed Jack.

Sitting in the tub, facing me he raised his hands and shrugged his shoulders and said "You know, she's just like *Autistic*."

Illinois, Illinois, Illinois

Changing the Illinois System of DD SupportIllinois residents who have family members with developmental disabilities are getting some welcome support from the Illinois Council on Developmental Disabilities (ICDD). They have created a 72 page Blueprint for System Redesign, a massive seven-year overhaul to provide long-term solutions for all individuals with developmental disabilities in Illinois. But now they need our help to push this through. Why is this important for you?Illinois ranks first in institutionalizing individuals and ranks last in the percentage of people with a developmental disability living in a setting of 1-6 people. As much as 15,000 people with developmental disabilities are currently on waiting lists for services. This will only increase. Do we want our family members to continue marching into this broken system?

Selfless Parent?

Are you the selfless parent of a child with autism?
Saturday January 24, 2009
There are many reasons to get married and/or have children. In my own experience, I find that the majority of people choose to marry and have children because (1) everyone does it, and it just seems natural; (2) they love their mate and/or want the pleasure of raising children; (3) they want the security that comes along with a mate and the expectation that children will take care of them in their old age. Some people certainly marry and have children because it gives them a sense of connection and purpose that they lacked prior to having a family.
None of these reasons, in my opinion, are "wrong" - they're simply part of the human condition.
In answer to my question "has your child with autism wrecked your life?" (referring specifically to children with really profound autistic symptoms), though, one commenter named Laura said this:
We don't become (or shouldn't become) wives or husbands or parents out of a selfish need or motivation for someone to give something back to us. These roles may require complete selflessness on our part at some point in life and deciding that because the other person cannot give back to me what I give to them...their life is not my call to make. And as a side note, I make their life worth living in some way by the way I have so much control over what kind of life they live. As with the disabled husband, with a disabled child, I have the responsibility to figure out what makes them tick, what gives them joy, satisfaction, confidence and any amount of independence and GIVE it to them in ridiculously large amounts.I must say that I am in awe of an individual for whom marriage and childbearing is a wholly unselfish and altruistic act - and for whom selflessness is a pure joy. Few of us would embrace an unexpected disability, and fewer of us would gladly dedicate their lives solely to the joy, satisfaction and confidence of another.
Personally, while I am raising a child with autism - and while my husband and I have made life changes to support that child's needs - I can't really say that I became a parent out of a purely selfless desire to care for another human being. I wanted to enjoy parenthood (and I do!). I wanted a reason to play, get silly, and rediscover the world through a child's eyes (and I do!). It's hard for me to fault parents for feeling angry, frustrated or depressed when none of their ordinary dreams of parenthood come true.
What's your feeling about marriage, child-rearing, and unexpected disability? Express your thoughts here - or vote in the poll!
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I have to admit sometimes I feel cheated. It's usually after I've had some kind of GREAT experience and I'm living life almost forgetting about what Sal deals with and it comes RAGING in. Maybe it's in the form of a full-blown meltdown, a bathroom incidence, a Doctor's visit (you forget she can't open her mouth and say "aw" on command), or maybe a skating party.

Yes, last night it came RAGING in!!! First there was the physical limitations of being able to put on skates (or even helping shove her foot in the boot), then there was the anxiety attack when she began to skate, then there was the CONSTANT need for verbal commands as to what to do. When I looked around and saw that our 3 year old neighbor had gotten the hang of it and we were still NO WHERE near there I remembered. We call it Autism - but I'm not sure that's an accurate name. Whatever it is that has a hold of Sal. That limits her communication, her brain waves, her muscles and joints to work in sync with her brain. It's times like those that I want to draw my sword like Peter did. But I know all too well, it hasn't won everything. There are SO many blessing that go with it. I usually think that the blessings outnumber the problems. It's only sometimes when it seems EVERYTHING is an obstacle.

But in retrospect we beat "it's" butt last night. She did SO well for her limitations that it really is a blessing. Her meltdown didn't last *that* long and she was encouraged by all of her peers. So take that Autism. We will persevere.

My Work Here Is Done

We just got home from JES skating party. I'm putting Jack to bed and he takes out a new pair of pants and puts them on to wear to bed . He also wants to wear his coat to bed. I tell him to take off the pants and coat and put on his footie pjs. He starts to cry and says "You just ruin my life all the time." I couldn't help but laugh out loud. I know he's tired , but it was so funny the way he said it. I got him dressed and tucked him in, kissed him and told him I'd see him in the morning and I'd ruin his life some more. :-)

"You're not supposed to do that, you're supposed to make my life happy and fun."

Oh, that Jack a loo.

So ---- skating. Sally did REALLY well. It was really HARD work tonight. Sal has a problem with herself in space anyway - let alone put her on wheels. So her and I went around the rink about 4 times all together. It took a while but we made it. We got something to drink and then watched all her friends.

That was cute too. All her buddies would give her kuddos and support as they passed by on the rink. Mrs Legner was there - she skated with Sal tonight. Sal was quite the talk of the place. Everyone was so proud of her. I KNOW she FELL into bed tonight - we had Tech club, school, bowling and then skating. No rest for the wicked. ;-)

His Pocket

Sigh..... I asked Jack for his library card this morning. I had given it to him yesterday so he could get a book on the book mobile. "It's in my pants from yesterday."

I cautiously put my hand in his little pocket(I'm always on the alert for something to bite me). I swear the boy could last 4 days in the wilderness from what he has in his pockets. There was trail mix, that he had bought at lunch and was going to give to his sister - but forgot, 2 Pok'e mon cards, a tiny pencil with the eraser chewed off. I found two pennies in the other pocket, a folded math paper, a cap from a milk carton (that he kept from lunch so he could play with Rexie later on), a Crusader cash, and his library card.

Between his pockets and his backpack it's scary what the boy deems "important" enough to hang on to. (rolling my eyes)

We're on day #3 of him wearing nail polish. He said some kids laughed at him - but not that many. I don't know if I should be proud that he doesn't give in to peer pressure or ashamed.

Jack decided today, that since Sally goes to school early on Tues and Thursdays, he should then walk by himself to school. When I agreed and told him he could go right then he changed his tune. He'd start next Tuesday. I swear sometimes that boy seems to just say things to see if he can manipulate his way. Almost like his life isn't right unless he's being persecuted.

Sally, on the other hand is always in a good mood and always happy for ANYTHING! I got a big thank you today because her Staley shirt was clean and that I had it all ready for her to wear today. You just never know.........

Tonight is Jack's b-ball session and I *still* don't know who Robert (Sal's People) is. So I'll get that disappointed "it's ok - I know you're a looser" look from her. ;-) She's SO into her schedule. We go over what's going on every morning. Sometimes I have to remind her that we need only think about the day at hand.

I had homework last night. Another questionnaire from the Psychologist at school. If I had a nickel for every questionnaire I've answered - well, I wouldn't need to work - that's for sure. I'm thinking seriously of making a LOT of copies of all the Dr reports for EACH teacher and or therapist going into Middle School. It's frustrating sometimes.

Speaking of.... the husband was upset last night. Mostly about lack of care coming his way from others. It's hard to watch him go through things sometimes. I know it's part of the grief stuff that we have to go through due to our situation and I guess I should just be happy that it seems we don't do it at the same time. :-)

Someone once told me that it was like the ocean. You go in and you feel the cold and you keep wading in until you can't take the cold anymore and you have to back to the beach and then after you warm up a little you go back in .... repeating this process over and over and over for the rest of your life. It's hard - but not as hard as it could be. Only I know better than to mention that right now. Everyone needs a time to really *feel* it, on their own terms.

It's cute to watch Sal on Tues and Thurs morning. She has Tech club at 7:30 a.m. and I take her to school early. I have to get out and open the door for her (so celebrity fashion) because she can't open the door. She hardly kisses me good-bye. She's all business, ready to start the day. Jack gets a little chance of "freedom" by getting to stay at home for the few minutes I'm gone.

Jack also gets to cook his own breakfast and do what he wants to without torture from his older sister. And I get peace!!! I'm loving Tues and Thurs mornings.

Mrs L told me that last Tech club Sal needed NO help at all on her computer. They were to copy a poem (typing) and then add pictures for the poem. Her poem typing was a *little* off but her pictures were great and she did it ALL by herself!!!!

Sally has also decided that she should be the one to keep Mabel in line. What's funny is - no one deserves it more. :-) She *roughly* pets her and tells her in her fish wife voice "Mabel, you not bite me, you be good, lets play tug of war, Mabel." Which consists of Sally pulling Mabel around by a rope toy and yelling at the top of her lungs: "tug of war, Mabel, tug of war". It really is quite comical.

Jack wanted his nails painted last night - because some wrestler has them painted. AND was quite upset that I had no purple polish. It was like I wasn't American or something because I had no purple nail polish. He did, however, pick out a chrome color and was ok with it. We'll see how it went today in school. I kind of hinted around that some kids may laugh at him. He seemed not to care - so we'll see ..... It's that double edged sword again - not wanting him to fall to peer pressure but yet wanting him not to be totally outcast either. Lord, give me strength.

It's been on of THOSE weekends....

It was a tiring weekend. Sal has been kind of out of sorts. Not really sure what it is. Swimming went very well and so did basketball. We even managed to find New Lenox and Lincoln Way. We're beginning to be world travelers. :-)

But after that home life has not been pretty. I think I caught whatever Bill has last week. :-( And Bill just getting over whatever it was ..... well, it didn't set well with Sal that her parents were kind of "down for the count".

Talked to my Mom - seems everyone I know has Cancer. And the few down there who don't are busy tending to the ones who do. It's a sobering situation.

My sister is on to be in the Follies. She's got her script and is busy memorizing. I don't know how she does it.

Lon and I are trucking through the country this morning to get our hairs cut. I'm supposed to go in after that to work but I'm going to call bossman. I got 0 done this weekend and this is the last Monday off due to tax season so I figure I could really use the time here.

Bill picked up his tee-shirts this weekend and hats. Jack and Sal proudly wore things to the game. So many people have "said" they'll vote for him. It will be interesting.

Right when the vote ends and tax season takes a back seat I need to make sure to check out all the things that need to be done to transition Sal. I'm very anxious about it and I'm trying hard not to be - you know how she picks up on all that. In fact, that could be some of her "stuff" lately.

Ya just never know.

LOOOONNNNNG, Emotional Day

So, the bossman walks in today and immedately cancels a haircut so he can see the ignaguration. Didn't even dawn on me that we would be able to see in on the web. So at 10:30 I tuned in and totally got ticked because the feed was SO bad. Everyone and their mother must have been logged on to see it - because it stopped all the time and froze and the sound wasn't even on the same page as the video. So I went to the radio and listened to his speech and then cried and cried.

But the good kind of cry. The kind of tears that afirm "amen" to what he was saying. I SO hope he can unite this country.

No matter what your politics were today you had to feel part of something larger than yourself. Amazing pride of the huge step our country has taken. Less than 40 years ago not everyone had the same rights. Feels good to get it right. :-)

(January 20, 2008)

If Her Mom Could Just Get It Together

Wednesday we had basketball with Jack. I pick them up from school and we go right to the Park District. Jack does his basketball thing and Sal and I sit in the bleachers and read or do whatever. This time I brought her people (Fisher Price Little People). She got them all out, lined them up and looked at me and said "You didn't bring Robert?" Stunned (and not knowing who the heck Robert was) I said "Well, no, I just grabbed some and put them in a bag."

"That's ok" she said in a voice tone that was in a sense saying 'I've lived with your lack of performance this long - I can keep going'. :-) It was so funny.

We (my *wonderful* children and myself) then spent 2 days together. Because of the cold school was cancelled. Ugghhh. How the heck to stay at home mothers do it??? Times like this make me really appreciate teachers.

Lon and I trucked out to Minooka on Saturday for a "Diva Day" (crop from 10-10) It was FANTASTIC!!! We had the best time. We've gone often enough now that we know most of the women by name and the owners are good friends now, too. It was a day that was MUCH needed for both of us.

We hadn't seen each other since before Christmas so we had a LOT to talk about.
:-) We got a lot accomplished too. I got all my cards made and then some and she got like 21 pages done.

It was hell going back to work today. Not that I didn't' want to go - LOVE getting away. But when you've been gone for a couple of days things kind of pile up and you feel a little bit overwhelmed.

I guess it's nice to have job security. :-)

Homeschooling?

Jack had a dentist appointment yesterday and on the way there we started talking about school and he commented that he may fail (being a goober - not really) I said - he'd have to go to summer school - no camp. "Or you could home school me"

"Well, sure" I said "And you know - we could just go home and I'll do your teeth too."

"But you're not a dentist" he said, surprised.

"Yeah, and I'm not a teacher either, am I?"

"No, but we could have eaten lunch together."

He's such a pain in the arse. He's ALWAYS talking his way into or out of something. He gives me a headache. :-)

Dr Goodman was happy to see him. Thought he was going to have to pull a back tooth - but when the x-rays came back everything was ok. Didn't even charge us for the visit! :-) I figure he knows all too well that he'll be making some good money off of old Jack Jack. His mouth looks more like a picket fence. Plus the fact that he's already seen him twice for accidents. :-) But he did give us a couple of referrals for orthodontists. Ugghh. Dr Goodman seemed to think it would probably be a year or so before braces - and they MAY be able to do something preventative now.

We got through Market Day and then on to the course for dinner. We were all thinking we wouldn't have school. But to our surprise we were wrong. I think we were all happy to go to work/school today. :-)

Bill's been out plowing enough that the 3 of us are working each other's nerves pretty good. I was happy to get through the weekend without killing one of them. They were on fire!

The Brick Goes Down!

Well, not *really*. Sal got hit in the head at basketball yesterday. She cried and wouldn't let Coach Becky out of the bear hug she locked on her. But finally they got her to run down the court and the whole place cheered. Except me - I had missed the whole thing - I was sitting by little Emily - who, had been given her baby brother and I was fighting every urge I had to grab the child. I was SURE he was going head first down the bleacher stairs. Thank God Grandma came over and took him. Thank you - I could watch the game again.

Sal was no worse for the wear and was even excited about her team winning the game. Which is new - before she didn't have a clue or seem to care.

We also had swimming on Saturday. Oh my, how I forgot how "fun" swimming is. Or should I say dressing after swimming. Ughhh. Sal is just *starting* to put clothes on by herself and when she's wet - forget it. It's hard enough for me to get stuff on her.

I sat next to a troubled Mom who was sweating her kid screaming in the water. :-) I think she was wishing there was vodka in the coffee cup she had. :-) I told her about Jack who at age 5 screamed almost every swimming lesson and now at age 7 he's a darn fish and LOVES the water. The smile that came across her face told me she was in need of hearing that. I told her I knew exactly how she felt, do I push him? Do I let him quit? If I push him will he fear the water? I told her I thought she was doing the right thing in just letting him sit in on the lesson and not letting him get out but also not pushing him to do the "swim" thing - but letting him sit and then play ring around the rosie with the class. She was a very nice and thanked me for talking to her. When Sal came over she gave me a look and I explained the "Sal story". She told me her sister was autistic. I tell ya, God ALWAYS draws us together. It's certainly not "usual" for me to talk to anyone without them speaking first - but this lady seemed so lost in her world-plus, I shouldn't have even been on that side - but our instructor had said the kids would be on that side and then at the last minute changed - so I just stayed - and then we find this out about each other. God sure seems to work overtime sometimes. :-)

It was nice to meet up with someone who "gets it" this weekend. It was a rough two days with the kids by myself. It's like sometimes they just feed off each other and there's no talking to them. Like a full moon kind of thing. Jack especially seemed like a kid off his Ritalin.

They got paid tonight and as promised Sal was missing .50. She did not have good days at school on Thurs and Friday and we had told her that it was part of her "job description" if she wanted to receive her full allowance. I think she got the message when we paraded Jack's full allowance in front of her. And let me tell you - we were GENEROUS with his because he *should* have had deductions but I wanted to make an example for Sal. I told Jack that this week he would be "graded" more sternly - meaning his little smart mouth better stay silent more - much more.

Market Day tomorrow - wish I was going to work. I'm a little tired of Market Day - plus I may not have Bill to help - which leave me and only me. Ugghh. I'm hoping to rope in Mary with a sob story tomorrow. :-)

10 "Usual" Traits of Autistic People

There are SO many "deficits" of Autism - but for every down side to autism, there seems to be a positive -- an unusual trait that rarely appears among the "typical" community, but shines out among autistic folk. These plusses are well worth celebrating. (rec'd from a friend and then edited by me) :-)

1. Autistic People Rarely Lie
We all claim to value the truth, but almost all of us tell little white lies. All, that is, except people on the autism spectrum. To them, truth is truth -- and a good word from a person on the spectrum is the real deal.
Sal doesn't lie but it getting good about "kidding". She also has a different idea of reality sometimes. For example - moving her aside is a "push" according to her. :-)

2. People on the Autism Spectrum Live in the Moment
How often do typical people fail to notice what's in front of their eyes because they're distracted by social cues or random chitchat? People on the autism spectrum truly attend to the sensory input that surrounds them. Many have achieved the ideal of mindfulness.
OH MY YES!!! And for the most part it is refreshing AND necessary - because - Sal's speech is sometimes lacking so talking about here and now provides clues for me to be able to guess at the word being said. (even though I "put my tongue on my teeth" I usually need more help) :-)

3. People with Autism Rarely Judge Others
Who's fatter? Richer? Smarter? For people on the autism spectrum, these distinctions hold much less importance than for typical folks. In fact, people on the spectrum often see through such surface appearances to discover the real person.
BIGTIME - Sal can't describe people - but she can remember a name! :-) Or where she saw them or who they "belong" to. :-) She rarely sees "bad" in the world. :-)

4. Autistic People are Passionate
Of course, not all autistic people are alike. But many are truly passionate about the things, ideas and people in their lives. How many "typical" people can say the same?
Yes, at age 11 I can honestly say my daughter *prefers* my company - which is both a blessing and a curse. Not only does it get "old" - I worry what will happen when I leave this earth. So we work HARD on separating. Even though we seem to have a link that is unseen.

5. People with Autism Are Not Tied to Social Expectations
If you've ever bought a car, played a game or joined a club to fit in, you know how hard it is to be true to yourself. But for people with autism, social expectations can be honestly irrelevant. What matters is true liking, interest and passion -- not keeping up with the Joneses.
And what I wouldn't give to have her father be the same. :-) No, Sal could care less about what you have or what your status is. She couldn't care less if you like her shirt or not - SHE does. :-) She LOVES her Dora hat and will wear it no matter what. Jack is her hero because he's her brother - no other reason. He doesn't have to be *someone* or care for her - she's the picture perfect unconditional lover. :-)

6. People with Autism Have Terrific Memories
How often do typical people forget directions, or fail to take note of colors, names, and other details? People on the autism spectrum are often much more tuned in to details. They may have a much better memory than their typical peers for all kind of critical details.
MOST CERTAINLY! Sal's memory is infallible! She remembers where others put stuff. (This is why her brother will live with her in college - he needs someone to remember where he put his shoes) :-) The strange thing is that she's not real sure about numbers. Which, in my opinion, is SO memory - so unchanging - 2+2 will ALWAYS be 4. Leaves me scratching my head.

7. Autistic People Are Less Materialistic
Of course, this is not universally true -- but in general, people with autism are far less concerned with outward appearance than their typical peers. As a result, they worry less about brand names, hairstyles and other expensive but unimportant externals than most people do.
Yep, she's NOT into brands or what's the latest cool thing. Doesn't mean she doesn't say at almost every toy commercial "I want that". :-) But it DOES mean that she's OVERJOYED at hand me downs and trinky little cheap things. :-)

8. Autistic People Play Fewer Head Games
Who was that woman, and why were you looking at her? I know I TOLD you I didn't mind if you went out, but why did you believe me? Most autistic people don't play games like these -- and they assume that you won't either. It's a refreshing and wonderful change from the Peyton Place emotional roller coaster that mars too many typical relationships!
And this is a main reason why Sal gravitates towards boys. They are more "what you see is what you get". There's no politics with boys. No, "oh no you didn't" crap. :-) I've always said Jack will be the politician and Sal will be his right hand aide - remembering all the names and where he left his speech. :-)

9. Autistic People Have Fewer Hidden Agendas
Most of the time, if a person on the autism spectrum tells you what he wants -- he is telling you what he wants. No need to beat around the bush, second guess, and hope you're reading between the lines!
Oh yeah, Sal most certainly knows what she wants and what *should* be done. Doesn't always mean she does it. :-) But she's also very blunt about what she wants and in our society can be easily seen as "rude". We try to remind her of her "tone" and what's rude and not to say. :-)

10. People with Autism Open New Doors for Neurotypicals
For some of us neurotypicals, having an autistic person in our lives has had a profound positive impact on our perceptions, beliefs and expectations. For me, at least, being the mom of a son on the autism spectrum has released me from a lifetime of "should" -- and offered me a new world of "is."
Oh Sing It Sistah!!!!! True, true true! My life is MUCH better because of Sal. She has saved me from what I *thought* was important - and made me realize what REALLY is. She's made me MUCH more liberal. :-) (to Bill's horror) She's made me more patient and able to see blessings SO much clearer. She's also brought some of the most FANTASTIC people I've ever met into my life. From Lon all the way to Katie and Pauly from bowling - because of her my life has been enriched. ;-)

The Social Butterfly

You may not know - buuuuuutttt - I have won the football pool against all my favorite Village people. That's right - I beat a bunch of BOYS at picking who would win each week. :-) I have my own formula of doing it and it drives Bill crazy. I can't let you in on all the secrets - but I ALWAYS go with Chicago and I ALWAYS go against Green Bay. :-) I also have a thing about Manning so I try to go with him - but last time I had to go against him. (sorry P). :-) I was the ONLY person to predict ALL the wildcard games correctly!!!! :-) I HAVE to gloat because last year I did really poorly. :-)

So I'm *praying* that my prediction of the Giants and Tennessee comes out correctly. :-) (Go Titans!) :-) It's been a fun ride and the trash talk has been LOTS of fun! :-)

We have signed Miss Sally up for all kinds of stuff!!! She comes home with something almost every night that she wants to do. :-) She's got bowling on Thursdays, basketball and social club on Saturdays, Tech club on Tues and Thurs, and she wants to go to Young Rembrandts on Fridays. :-) She's really getting *into* it now. :-)

Jack had his first basketball "class" last night. Afterwards the coach informed us that Jack was very good and would be a great basketball player. I think we BOTH rolled our eyes. Great - just what we need - Jack's thing is - he has a lot of God given talent for sports in general - BUT he has a LOT of quit in him. :-) He's got absolutely no Uncle Brad (standing out in the rain practicing 3 pointers) in him. (also wouldn't hurt to jack him up and run a little humility under him either).

Last night at dinner he was doing the whole "not fair" thing again because Sal's got so many things she's doing now. I told him that no, life wasn't fair. People don't get what the deserve and don't deserve what they get. It's not fair that Sal can't write, ride a bike, tie her shoes, or dribble a ball. It's not fair that he's alive and my friend's Jack isn't. If you don't ever question things when things are good why do you think you should question them when things aren't so good?

I think he really hates that he has a mother who gives ".50 cent lectures" (as my aunt used to say). :-) You can almost hear his little brain saying "why did I even say anything, here she goes again." :-)

We refinanced tonight - got a better rate - everything else stayed the same. Mr G is always happy to see our credit reports. ;-) (mine is better than Bills) :-p He also *loves* dealing with our insurance agent. :-) It worked out well that the kids were at daycare - but the animals were idiots just the same. :-)

The animals - ugghh. Mabe has been better since we put up the gate to downstairs and have closed all doors to the bedrooms. But Lord, she picks on Sade. I try to "rescue" Sade but she starts it too - so I figure let 'em have each other. :-)

Mabel's new trick is when she *does* get downstairs she jumps up on the computer table and into the window. Doesn't matter WHAT is up there - pictures, change, spelling words, you name it - it all goes flying - plus she's bending up my blinds down there. But God forbid she can't see outside. Who would howl at the kids walking to school??? :-)