Day One

First day at home with "them". We made those bead crafts that you iron. Thank you SO much to Dick and Laurena - my eyesight and nerves are shot now - trying to get all those little TINY things in their place. :-) They each made two and I even made one. Jack took his to Tommy's. :-)

Tomorrow we're painting birdhouses. :-) I figure to try and stay one step ahead of them. :-)

Sal had a rough time after we were done with lunch. She didn't want to go out and play and she just didn't know *what* to do with herself. She misses camp as much as I do. :-)

They BOTH set the table tonight AND cleared!!!! Sometimes the cooperation is scarier than the arguing. :-)

So we head into tomorrow - more chores to do tomorrow than we had today. We'll see how it goes.

Christmas is over...

...and that is that - no more pennies in the old man's hat. :-)

What a really fun and enjoyable Christmas. Christmas Eve - we went to dinner as a little family and then got hot choc and cookies and went to look at lights. We came home, opened one gift, checked to see where Santa was via Norad and went to bed. We got up Christmas morning - tore through all our gifts(Santa has a VERY lenient "nice" list - Mabel AND Jack got gifts) and waited for Aunt Jill - and waited and waited and waited. Amtrak had decided that their engine couldn't run so Aunt Jill was now on the bus!!!! :-/ And Smart Alec that she is - when asked "am I still picking you up at the train station?"

"Well, I don't think they'll drop me by your house." :-) Gotta love her. She FINALLY made it up here and we ate, and ate, and played games and watched TV and talked our heads off . :-) Friday we went shopping - Joann's of course - our favorite store. :-) And then had Chinese "Far, raw, raw, raw, raw, raw, raw, raw, raw. :-)

Saturday was SO rainy - Bill got called out to "control floods". We took Aunt Jill to the train station and found out that she was again getting a bus. :-/ Since I had the kids in tow she told us to go ahead (chicken) and she would call if the bus didn't come. She also promised to call when she got home. The phone rang at 3a.m.!!!! The bus didn't get to Naperville till 8:30 and then - even with only 4 people on board and all of them getting off at McComb or Quincy - they STILL made ALL the stops in between!!!!!! I felt SO bad for her!!!!!

Sunday we went to Dick and Laurena's. Bob got a new puppy! Oh, he is the CUTEST! He's this little bitty thing with these HUGE feet. It's like he's wearing floppy slippers. It's TOO funny. We had a really nice time. The kids of course, carried on as they do. Jack taught Jackie how to play "garbage" - which I think is a lot like playing "cups" on Friends. :-) Sally read to Laurena. Bob took Jack out and threw the football back and forth. Jack LOVED that! ;-) Sally's still a little confused about just where Dave lives. He talks about going to his house - but he brought clothes to his Mom's house. ;-) And she INSISTS that Jackie lives there - because they call it "Jackie's Room". :-)

Today we got a visit from Harry and Sherry. We always laugh so much that my cheeks hurt when they leave. They think Mabel is so cute. :-) (she put on her best "I'm so innocent" look) Those two are so cute and just the best example of a good marriage. I miss them so. Sherry has got to write a book. She has a friend who by all means shouldn't be able to walk erect. :-) Sherry has the BEST stories! We had a GOOD time. :-)

Bill goes back to work tomorrow and I'm stuck with the children!!!
I think we're going to try and make a gingerbread house tomorrow and tackle the laundry. I haven't done a load since Christmas eve!!!! Thank God, Santa brought new socks. :-)

So ends another Christmas. I HAVE to remember that next year I MUST plan! I HAVE to do things EARLY - because I'm not always assured the use of Bill. :-) I was wrapping presents at midnight one night. I don't LIKE that!!!!! But, with him out plowing - it was the only time I was sure I'd get total alone time. So next year - I need to do things earlier! :-)

I think we're going to try more candy making next year. We've mastered our fake turtles and it's time to move up. :-)

Both kids did pretty well with all the presents and "greediness" and ADD - flit from one to another. I don't know HOW to teach gratitude but they need it. They are THRILLED with EVERYTHING - really they have never NOT liked a present - but they're always working for something else. When we're shopping "can't we get?....." and this is one day after they had received a ton of gifts. I guess it's a kid thing - but I still want to address contentment. Granted Bill should be the first student. :-)

I have to say I'm looking forward to not getting out of my jammies tomorrow. :-)

Old Maid Wars

The sun is barely up and Jack is screaming at Sal about not picking the end card all the time. so the *bliss* of last night's magical Christmas decorating is shot to heck. :-)

"Sal, If you believe you can... then you can"

This is what Jack said as he was teaching Sally to hang ornaments on the tree. Yes, we FINALLY got the thing up. He came RUNNING home from J&J's and screaming!!!! He could see the lights from the street and raced up the stairs to see the tree. Bill left to get dinner and as Jack and I hung ornaments he said "I love Christmas." I wanted to say "yeah, well - keep it to yourself - not all of us feel that way." :-)

He just melted my heart as he taught Sal how to hang things. So patient but yet insistent that she do it herself. After we got it all up they set to playing cards (we found Christmas Old Maid) at the table. It was SO cute.

Ya know, I saw Jack tonight as the brother he will always be. I joke a lot about him being a monster - and he is - he works my last nerve pretty good. BUT - he also works my heart pretty good too. I could learn a lot from him -how to push Sal without loosing his cool or doing it for her. He really has a gift.

The Things You Find Out

Tis the Season of family drama:

We're number one on the crapper list of the family. Found out from a family member today that certain members have had their fill of us. Isn't THAT a Merry Christmas? Bill asked me "isn't it strange how strangers care more about us than the family?" Yeah - well, you can't pick your family - that's for sure.


Got a call from a friend in he M town who just found out her husband is having an affair. After 18 years of marriage. I feel just sick for her. She has practically allienated her family because he didn't care for them. She now has no one. She's such a nice lady. It's unbelievable how MUCH her life has had to change. From the little she's told us it's probably for the best. He wanted her to believe that everything was her fault. Event he affair.

But what I think is the saddest is that her family doesn't seem to even care what's going on with her. Granted, she and him may have hurt feelings over the years - I don't know - but how do you knowingly turn your back on people? I just don't get it.

It's a COOOOOOLLLLDDD one here. Mable hasn't even had to have her chain on because she goes out and comes RIGHT back in. She lays on the couch and shivers. Her tail all rolled around her face. She CAN be cute.

Sally has had a REALLY tough day! Her behavior has been horrible. More like a 3 year old than an 11. She's openly dis-obeying. She refuses to occupy herself is Bill and I try to talk. I think we're going to need to try more meditation when we're off schedule. Maybe no winter camp was a bad idea. But I couldn't see paying for camp when I was getting paid days off. Did I say how much I love my job? ;-)

Sometimes I just don't understand

We had basketball today. We traveled to Oak Lawn. I dropped Sal off at the bus and then Daddy, Jack and I met her at the game. We got a little lost and thought we were late until we saw the bus pull in after we did. :-)

I've been told that God gave me Sal for a reason - that I was patient and flexible - to some extent I have bought that. But watching the game today - I don't understand why God gave some of the players to the parents they have. There was yelling and chastising!!!!! I guess at the last game I didn't sit close enough to anyone that I saw or heard any of this - but this time - oh my. It was like a couple of parents we had at Little League. Uh people - I got news for you - your child will NEVER be the numero uno!!!!! Special Needs is just THAT - there's a REASON your child qualifies for the program. And the really cool thing is that just DRIBBLING is a huge deal. I don't see your butt out there being a coach or a player. Damn - I just wanted to get up and very nicely slap a certain couple of parents right across the face.

Sally was hysterical. Standing EXACTLY on the square which she was told and just standing there. We all wore our "I Love Jaguars" shirts. She was pleased.

I told my sister the other day - I just don't see eye to eye with many Special Needs parents. I expect WAY more than they do in the form of behavior (ie: doing what Sal CAN to behave and follow rules) but for a GAME I do NOT expect her to do THAT well. For her to run up and down the court appropriately, that's enough for now. We'll work on other things - but it's NOT the end all be all. I can't stand parents that "coach" from the sidelines when it comes to "regular" children let alone when it comes to special needs. And I have a sneaky suspicion that the time is coming where I will confront these parents because I have a feeling that at some point they will yell at Sal and then - ------ Well, watch the Momma lion come out. To use a phrase I've stolen from a good friend "I will have to go Nam on them". :-)

Sally Sums It Up

There's no school today. When Sally woke up and I told her - she so matter of factly turned to me and said "that sucks". I was really taken aback. After choking down my laugh I told her it was better to say "that stinks". At any rate it's a far cry from the meltdowns we had last year when there was no school. I think she's VERY much more at ease about things this year. I credit her team for this. Mrs Legner says her class is not all about schedule and that has done Sally some real good this year. She's learned to roll with the flow.

*I* would love to have a meltdown. I do NOT want to be at home today. I get them from the 23-the 1st!!!! Isn't that punishment enough??? Between the children and the animals I'll be ready for heavy booze by noon.

Collections

Boy does *this* article hit home. I never thought of ALL the Little People she has as a "collection". Does make sense though.



Special-needs kids need special toys
At holiday time, parents may find it hard to buy gifts for autistic
children
By Lisa Black | Tribune reporter
December 15, 2008

Laurie Jerue struggled for years with bittersweet emotions as she
bought her daughter Big Bird toys while the girl's peers moved on to
teenage interests.

Her daughter, Sarah, 20, of Naperville is autistic. To this day, all
she has ever wanted for Christmas and birthdays were Sesame Street
characters and videos.

"There is a part of you that grieves with every holiday," Jerue said.

It is a dilemma that many parents of children with special needs face
at gift-giving times, with autism posing some of the most difficult
challenges.

Parents struggle with whether to oblige the child who desires nothing
more than church directories, word puzzles, spinning toys or even
cleaning supplies—all real examples from youngsters' wish lists.

Friends might see the child's exotic interests as humorous or cute.
But the youngster's family recognizes that the obsession represents
their child's special need for a coping tool or bridge to the outside
world that is otherwise confusing and overwhelming.

"Autism is one of the hardest, if not the hardest, to figure out and
help," said Ellen Metrick, a manager for the Chicago-based National
Lekotek Center, a non-profit organization that provides and modifies
toys for children with disabilities.

"For children who have sensory processing difficulties, some kids
crave more sensory input and other kids need less," she said. "They
have a very difficult time with pretend play. It's too abstract."

Jerue for years tried to shift her daughter's interest to educational
toys, but finally concluded in a "light-bulb moment" that Sarah is
merely a collector.

"Once I let go of some of those social expectations . . . and bought
what I just thought would make her happy, it's all been good," she
said.

Christopher Kennedy of Libertyville said gift-giving can be
frustrating, but there's never any question about what will make his
8-year-old daughter, Shea, happy.

"Children with autism tend to have singular interests," said
Kennedy. "We have just about every video ever made by the Wiggles and
Barney."

The BEST Christmas Party - EVER

The Knights of Columbus at St Doms do a FANTASTIC job for JBSRA. They not only donate big money to the organization so that fees for programs are less for parents - they put on a Christmas party for all the Special Needs kids that is FANTASTIC! We've gone or 5 years I think. It gets bigger every year. They feed us lunch - have caroling - and then the Fat Man shows up on a fire engine! (my personal favorite) What's also nice is that we ALL come together - little, big, adult, baby. So we ALL network - PLUS - there's hope. You see adults who have gotten married, work at jobs, live happy, independent lives. You also see kids "worse" off than yours and guess what - they're happy and having a great time just like everyone else. You get to talk to other parents who have "been there". Kids have melt downs and run screaming - but there is no "judgemental looks" there are smiles and the gaze of "yes, I remember those days". There is a community of tolerance to the max.

That Christmas party is really what Christmas is. Unbridled joy. Excitement and overly powerful hugs at seeing a friend. Adults sitting on Santa's lap. The sweet sound of voices who can't carry a tune singing their hearts out. Presents big and small and not a "no fair" to be heard.

Jack did exceptionally well. This party is for Special Needs kids and even though siblings are invited they do not get a present. Jack did VERY well with this. He was nice, and sat with Sal as she waited for her turn. He even took really good pictures with Dad's camera. He was rewarded with an afternoon at Juan and Jonathon's. (neighbors)

Sally goes to the North Pole today, on the Polar Express. It's a social club event and from what I hear it's at capacity! So everyone was asking everyone else at the Christmas Party if they'd be there. So as we left there was a LOT of "see you tomorrow" 's. :-)

Since Jack misses out on this again - he gets to help put up the tree (something usually reserved for Mom and Dad only). He likes being part of secrets and the whole Christmas magic. Even though he still believes this year I can see it probably won't be too long and I think he'll really enjoy being part of the other side.

Wish the sun wold come out.

He DID sign it - I think

From what I've read - Blogo DID sign the Autism Insurance Bill BEFORE going to jail. Can you believe this?? Talk about hubris!!! (do you like that, Sharon) :-) This guy should be taken out on the highway and made to do hard labor and then have to go and apologize to every single voter in IL.

So now I wonder exactly how MUCH it cost the ASI to get the bill through for mandatory insurance coverage. Living in IL makes one VERY cynical about politics. I hear from the Oct list that it isn't like that EVERYWHERE - but you learn what you live.

Makes for some very interesting talk at work. Even Mike was surprised at the level of corruption and pretty much nothing phases him. He wasn't REAL far off when he was joking about Obama calling him about a cabinet position - for a little money he could have been senator!!!!

Now on to REAL news affecting me: The dreaded Advent Calendar. I forget about this thing over the year. It has the ability to raise children from a sound sleep at some un-Godly hours!!! This thing has been a pia in my life since Jack was born and immediately recognized the thrill of getting "prezzies". Now, I also have Mabel to contend with, who loves to try and take a package out of the pocket and try to unwrap it. Bill misses out on all this "fun". Lucky b**t*** . :-)

We've also started putting change in a bank at every meal (one coin per family member) and with the coin saying what we're most thankful for. It's getting a little repetitive so tonight we're going to make it more detailed with what you're most thankful for *today*.

Big weekend coming up - we're going to try and get that flippin' tree up on Sunday. Sal is going to the North Pole on the Polar Express with the Social Club. So we thought we may be able to handle ONE kid and decorations. Then again, it is Jack so maybe we'll have to do it on Monday when they're at school. :-)

What a GAME!!!!!

Sally had her first basketball game yesterday against Lincoln Way. Oh My! It is UNBELIEVABLE! You end up routing for BOTH teams because they ALL try SO hard.

I had tears in my eyes the whole time. Sally played forward and stood (and I mean STOOD - with hands on hips) next to the basket until someone TOLD her to go to the other side of the court. She didn't touch the ball once. In fact, at one point she ducked so as to avoid the ball that was thrown TO her! :-) It was the BEST game I've EVER seen!!! There was SO much joy there, unbridled happiness and excitement just to be part of it all. You absolutely can NOT be in a bad mood around these kids!

Sally had a great time. She played a couple of quarters - she's the only girl on our team and was the only girl on either team yesterday. She wore her uniform with SUCH pride and then asked if we could go to Culvers after the game (just like we did after all of Jack's games). She knows what's what - that's for sure.

We're trying as a family to decide exactly what we're going to do on Christmas Eve. I've been vetoed on doing gifts on that night and instead doing it on Christmas morning. Aunt Jill comes up on the Day of and I think the kids will go to camp the day after. Christmas is hard - you can't plan too much because you're never sure if Dad will be around or not - depending on snow. So we try to plan yet be flexible.

Bah humbug.

Christmas, Shristmas

Lord, the inmates are running the asylum! Mabel has been "out" twice this week. Yesterday morning she slipped her chain because of the cold it had froze open. She was rewarded with biscuits that a lady used to coax her into her van - because it was so cold for her outside. (poor puppy) (my eyes rolling)......

So I had to run over to Humphrey Middle School and bring her back. Like mornings aren't crazy enough around here. When I had originally announced she was gone - I swear I saw smiles on Sadie and Rexy's face.

Mabel is a menace. She helps herself to anything on the table - we've now had to move Rexy to the counter top so Mabel doesn't eat her food. She also thinks that Sal's basket of stuffed animals was put there just for her - she practically skips when she's wrestled one away from Sal.

A tree seems almost impossible with this monster in the house. Let alone presents under the tree. Ugghh.

Sal has a new phrase...... She was trying to tell me about what she had made for the Book/Art Fair ...... Garland? Rings? Painting? Each guess was met with more and more exasperation.... "put your teeth together, Mom" as if I would just do that I would understand what she was saying. ;-) Finally, after MUCH frustration she said "you, killing me about this".

Where in the world did you hear that? I asked. She went on her way to her room to where her people would understand what she was saying. Her dumb old Mom was left in the kitchen to chuckle and marvel at even though Sally hadn't come up with that saying she did use it appropriately. That night I found out she had made a GARGOYLE! Of course, I said out loud - that's what she was saying. The art teacher thinks I'm a little off the beam - she's right of course. :-)

The last couple of days have been hard. Harder than the usual. I don't know - I've come to the part of the grief ocean where it's too cold and I have to go back to the beach. They say grief is like an ocean and you wade in and then back to the beach - further each time. I've been doing VERY well for SO long and lately - I just feel so very down. Probably the bathroom issues with Sal lately and the combination of the holidays.

Sally seems to be doing well in school. It now is more apparent how limited she is, physically. Oh well,.... always something. I guess it's the old saying "ya gotta keep on keepin' on."