Sunday, July 15, 2012

Food Stamps - Welfare

I recently saw several postings on fb that went something like "someday I'll be able to afford an iphone like the girl in front of me with the food stamps".   I admit - I don't like it when others cheat either - but I wonder how much "cheating" there is REALLY going on.  I guess I have a different take on "entitlements" from the government because my family receives a lot of them and will be getting even more when Sal turns 18.  

Here's what I mean:   The school bus picks Sally up at our door - has ever since she's gone to school (age 3).  Now granted there were years when she was bussed to Pioneer (across town) and so it was necessary but for 9 years she went to either grade school or jr high that is in walking distance from our house (Jack has and will continue to hoof it or ride his bike till he hits BHS).   Here's my point- I could have taken her - I could have walked her - took her in my car - you name it - but the transportation is given "free" to kids with special needs.  To me, this is kind of like the food stamp lady.   But here's the deal:  Sal is more independent by riding the bus, she has to rely on others to be able to understand her, to help her, etc.   On the other hand it helps me tremendously!  I was able to spend more time one on one with Jack, I was able to save gas money, which in turn I used to eat out.  We eat out a lot.  And anyone could say the same of me "I'll be able to eat out a lot when I have a daughter with special needs".  But that eating out keeps me sane sometimes.  It's a chance to get out and feel a little "normal".  Maybe the food stamp lady is like that too.  Maybe she has scraped a saved all just to get an iphone so she can feel somewhat "normal" or like "someone" or "connected".  Maybe we should all step back and walk in other's shoes before we judge so harshly. 

I do know that Bill and I live pretty much paycheck to paycheck like so many of us do right now.  I don't work so I can be here for the kids - it's hard to keep decent hours when you might be called to school at any time and the fact that you HAVE to - no matter what - be there when the bus pulls up or all holy hell will break loose.  My mother used to always tell me "money isn't everything - in fact it's hardly anything".  I think that's the problem - we put WAY too much stock in money.  We put WAY too much stalk in "he's getting more than me".   Jack would always start that "It's not fair thing".   I always reminded him that it wasn't fair that Sal was born the way she was.  It wasn't fair that Uncle Mike fell off a roof and will never walk again.  You don't deserve what you get and thank God, you don't get what you deserve.  So the next time you get ticked at the people taking all your tax money to be on food stamps - think of Sal riding on the bus that you paid for and smile - she does.  :-)

Friday, June 22, 2012

Summer Life

We're in full swing.  Got one week of Summer School under our belt.  Sal LOVES it!  *I* love the notes home because it's a worksheet with pictures and she circles what she's done and then circles if she likes it or not.  ;-)  (can you guess what Sal circles every time?)  :-) 

Met with my nephew (and family) and brother and sister-in-law last night.  One of them commented that Sal never seems to be in a bad mood.  That's true - very rarely.  Sometimes just a couple of minutes when she first gets up but then we slide into "life is good" mode.  ;-)

Jack's had 2 weeks of basketball camp and really likes it.  He goes to Camp-A-Lotta fun for 2 weeks and then back to basketball camp.   He comes home in such a good mood.  Gives me and him a little time to read before Sal comes home and then it's time for lunch. 

We've been doing the library every week and this week we're starting Jack cooking lunch on Friday.  We'll see how that goes.  :-)  Our first meal (planned by him) is Fish Sticks, Mac-n-cheese, and fruit.  Sal gets to do dishes afterwards.  :-)  Woo hoo.  :-)

Just finished reading "The Help".  Yeah - I know, I'm behind the rest of the world.  :-)  but........ OH.......MY....... GOD!   I BAWLED - I mean like shaking shoulders and ugly bawled!  I'm really down today because there's no more to read.  I want to check in on Minny and Abilene and see how they're doing.  I want to follow their lives more.  I get misty just thinking about it.  I'm going to make a mental note and read it with Jack in maybe a year.  It's a little long for us right now.  He gets in a kick and doesn't want to read everyday and I sometimes let it slide so it would take us YEARS to get through it right now.

I have to say, I'm really having a nice time with my kids this summer.  (hopefully that statement will not come back to bite me in the arse)  :-)

Saturday, June 16, 2012

Politics Politics

Is that what you call it?  When it's drama in the family?  I don't know - it's in suffering though.  One of the *lovely* family members has "un" friended both Bill and I on facebook - I know, gasp, how will we survive right?   I have to admit it was kind of weird - because we haven't seen hide nor hair for a LONG time - but I figure maybe they're cleaning out their "friends".  Whatever.  But the games go on - now we are getting more mail from them then we have in a lifetime.  It's like "look at me, look at me, I un-friended you - you're suppose to be upset".   It is to laugh. 
But......
In life that matters:

Attended a meeting about why Jack is receiving "enrichment" (tutoring) in reading.  I met Riley's Mom (Riley is one of Jack's best friends- and come to find out - they are cut from the same cloth- surprise, surprise, surprise)  ;-)   So here's the deal about why so many kids are in this "enrichment" class.  (leave it to school to put a positive spin on a title of a class)  :-)  Seems 2/3 of the entire Valley View School Dist will be in one of these classes for either Math or Lang Arts, because we are now adhering to NATIONAL standards instead of IL Standards.  :-/  Which I think is great - just stinks that we were so far behind AND it stinks that it will take away from another class - namely Careers or Band.  But I do see how their hands are tied because if I remember correctly IL is a state where PE is REQUIRED so the only thing left is Band.  :-/   It really is a shame.  So now the Band Director (as most Band directors ) has to pull more weight and get kids ready for the same productions with less and less time. 

I'm not sure what to do about our school systems problems - nationally.  but I KNOW it's NOT cut teachers.  We've GOT to wake up!!!  We've got to see that our CHILDREN are where our money should be spent and it's GOT to be PUBLIC.  I won't get into all of my "opinions" about private school or Millionaire's getting tax breaks or Oil companies getting subsidies - everyone has their own opinion about that.  But one thing I DO know for a FACT that we don't do right by our children - society wise.  That's one thing - if I could fix stuff - I'd ask God - or whoever - how the heck do we solve THAT one. 

But back to MY problem.  ;-)  He'll be in this class 2 days a week and it will focus on his comprehension of reading.  I'm all for it - except that it will take from Band.  So we sat him down last night and talked to him about how being in Band he'll have to do his work and then some because he will be a little behind because of his enrichment class.  We also explained why he was in this class and why this class was even in existence.  In typical Jack from he gave us the huffy breath and the "can I go, now" look.   THAT one will drive me to the asylum - this I'm sure of. 

We did the library again this week.  Sal's really getting good at finding books that she likes.  We started reading this week too - Sal's doing VERY well at that - as long as I remind her not to sing-song it.  She LOVES to do 'school-work' everyday and badgers me till I sit with her and read.  Jack and I are reading "Holes" now.  He seems to get it.  He just HATES taking time out to do stuff like that.  This week he's in for Math work on the computer.  Lucky lucky boy.  :-)

So, so far - we're doing well this summer.  I tell ya, it's scaring the heck out of me.  They're still fighting and bickering but for some reason I think I've learned how to ignore it.  Never having siblings close to my age  - I never had to deal with all that fighting and bickering and it's a little un-nerving for a control freak like me.  ;-)   I've even managed to cook dinner every night AND have something that Jack likes at each meal.  Now THAT'S an accomplishment.  :-) 

He is getting a little better about eating and he's really showing some interest in cooking.  We're thinking maybe every Friday our cooking day.  We'll see how it turns out.  ;-)

Friday, June 08, 2012

Anger!

I ran into a lady I've known from the Special Needs world today.  I hate to say it but I always dread talking to her because she is ALWAYS so very critical of the school, JBSRA, most everything.  And today was no exception.  She started in about the High School and her bad experiences.  Then proceeded to tell me that I was in fact, the person who knows Sally best.  You hear this SOOO much in the Special Needs world. 

Now, I may be the only one who feels this way -(or the only one who will tell the truth) but I do NOT know Sally best.  I know the Sally I live with - but even then - how well do you ever know someone?  I remember fighting with my Mom about who I was - what I felt.  You live with a spouse for years and when he/she cheats - did you know them best?  When you see a parent in the news commenting on their child that just slaughtered a family - didn't they think they "knew" their child?  We fool ourselves as parents and we puff ourselves up WAY too much. 

Again I say - we take our children to Dr's because we don't know what's best for our child when it comes to health.  We take Jack to an Orthodontist that our Dentist recommended because the Orthodontist knows better than the Dentist what's best for Jack.  Both Bill and myself can swim but Sal and Jack both went to swimming lessons.  So I ask - why are teachers not looked at like this?  Why is it we think we all know so much better than these professionals.  And lets face it - most of them have as much schooling as some doctors. 

There's that puzzle piece that stands for Autism and it's about the fact that we never get it all put together yet we pretend that we've seen the picture on the box.  That's siddy (as Sal would say).  So then I started to think about why.  This lady and I use her only as example because believe me, I've talked to SOOOO many people like this (typical children's parents too).  

I think it's the anger.  It's the hopelessness you feel.  The Special Needs world can be a very very dark and lonely place.  Even for the most well-adjusted and optimistic parent - there are still days and weeks and months of very dark days and too many worries and frustrations to count.  I hate to admit it but there's a lot of jealousy too.  Why me, why my kid?  Just the way the world is set up can make you very angry.  There's a lot of places where parents hands are tied and God love them the parents that made the laws to benefit my kid - they had to fight.  And in some areas I still have to "fight" or be on guard.  But school has come SO far and is making strides more and more and more so to "fight" and complain all the time is senseless to me - although I so very much understand the feelings behind it. 

I wonder if we could build a gym for Special Needs Parents - and have a staff there that can help us all to put that anger where it belongs.  Make use of all that anger and hurt and pain.  The bad thing about that - Special Needs parents do less for themselves than "typical" parents so this gym would soon turn into meetings on "how to better_________"   :-)  

Thursday, June 07, 2012

I'm Very Very Scared!

So we're on day #3 of just me and "them" this summer.  And (I hate to say it - for fear of jinxing it) they have been VERY good.  We did the Orthodontist on Tuesday - Jack needs oral surgery because he has two teeth that are attached to the bone.  Ughhh.  We did nothing on Wednesday and had a few tense moments but we survived and today we went to the library.  We took a vote and decided that we will go to the library every Thursday afternoon and then on our way home drop off Sal at the PD so she can go bowling.  (I LOVE it when you can do two things at once).

At the library we found what they call "Play Away".  It's books on a tiny little device - about as big as a pack of cards - that you just hook your headphones to and it reads the book to you.  You probably know all about these things - I'm pretty far behind - but DANG - what a find.  Sal LOVES them.  She has sat and listened to Curious George for over an hour!  :-)

Jack, of course, is more interested in video games than the books - but that's ok.  I've told them that they get this week free and next week we're gonna do some Math and Reading every day.  As we left the library I suggested a "TV Free day each week" - THAT didn't go over so well.  Maybe I'll start with a TV Free afternoon and work our way up.  They don't seem to get that it will be as hard on me as it will on them.  :-/

Sal's graduation went VERY well.  I was doing pretty good until I realized that HS means only 4 more years!  When I look back at how FAST the last 4 went - Oh Good Lord!  Sal's ready - me, not so much.  She is so funny.  When we start the summer I always call "Family Meeting" and go over new changes and things I want them to learn over the summer.  (ok, so I usually bite off WAY too much and we don't get most of the list done - but I have hope)  ;-)   This year our bedtime will only get pushed back a half hour on the weekdays - Jack's got basketball, Sal's got Summer School, so 9:00 it is.  They were pretty cool with that.  Plus, the fact that we're usually up by 7 everyday.  So then I went on to talk about doing away with kool-aid all day long.  We'll get a glass with each meal and in between it's water.  That was ok with them if I could make ice - done deal.  :-)  I told Sal I'd really like to see her be able to take a shower and wash her hair by herself.  I got the "eyes" on this one.  Some questions - but when I told her I'd make a chart to help her remember and I'd show her how the first couple of times she was ok. 

So far Sal has dressed herself every morning, we have yet to do the shower thing.  :-)   Things seem to go well when I put our "schedule" on our white board in the morning.  What time lunch will be (and what we'll have) and then what we'll be doing etc.  After 3 years of being home - I just may have this whole stay at home thing down.  Did I just say that?  Oh, oh..... tomorrow should be a doozie.  :-)

Tuesday, May 29, 2012

Dance Dance Dance

Nights like tonight are always a little bitter-sweet in many ways.  Sal is going to her very last Jr High dance tonight AND...... she wore. a. skirt!  :-)   It was all her idea.  So were the orange nails and red toenails.  ;-)   But back to what I was saying:  I'm happy and I'm sad.  I'm proud and I'm jealous.  I can't believe how far she's come and I hate how long we have to go.

The ugly feelings started bubbling up as I painted her nails.  Probably to most mothers this is a fun thing - maybe even something you can go and get done together.  With Sal it's a chore.  She squirms and laughs and makes the most unattractive screechy voice and at times you want to slap her - but then she's SO appreciative of it too.  I swear - if you weren't a little crazy before your special needs kid - you will be after - just from the sheer craziness of the emotions. 

She came home with notes from teachers today.  Good-byes and We'll Miss Yous AND Thank yous to us for *letting* them teach Sal.  That always gets me.  The tears always start as again I'm reminded that there are SO many people who SO appreciate her and they're not even related! 

So we wait for Cinderella to return from the ball.  I can't wait to hear the stories. 

Friday, May 25, 2012

Goofy, Loveable Auntie Jill

Aunt Jill came up this last weekend.  She comes up for each kids' birthday.  She stayed a little longer so she could see Sal's soccer game.  We had a BALL.  It was a BEAUTIFUL day and we sat under a tree and had a perfect view of the Brick.  :-)   My sister was amazed at how Sal stands while the others play around her.  She is so funny.  Sal loved that Aunt Jill was there and that we all got to see her "play".

The girls all went to Goodwill and Meijer over the weekend.  Sal got a TON of stuff at Goodwill.  She had a card that got her 10% off.  She must have got it when she was with Bill one time - I had no idea about it until she pulled it out and handed it to the cashier.  ;-)  

We then went home and watched Preakness.  No Calvin this year - which made us sad but we were glad to see I'll Have Another win #2 of the triple crown. 

Jack had a wonderful birth-WEEK.  Presents came on Monday, Tues, Thurs, and Saturday.  ;-)   He got a lot of Legos and has not stopped building stuff since they rolled in.  I like that he'd rather build than play video games. 

Strange happenings in the "family":  Sister-in-law "un" - friended me AND Bill on Facebook.  Kind of strange and out of left field being as how we haven't seen them in over a year.  Also the middle child un-friended me only - BUT had no problem cashing my check for birthday and graduation.  :-)   When I look at stuff like that I can't help but laugh.  I have this happen and then go see JBSRA play and I thank GOD that he's given me a gift like Sal and her friends.  Aunt Jill and I talked a lot about how we take for granted just what is important in life.  Her and I are a little more in tune since we DEAL with our Special Needs loved ones.  I find it interesting that she's glad she doesn't have my trials and I'm glad I don't have hers.  Isn't there a saying about if we all put our problems in a big bag we'd all pull our own out.  Something like that. 

It always amazes me that my sister is so adamant about being glad she never had to do what I do with Sal - BUT - she's SO good with Sal.  Seriously, she treats Sal like any other kid - but yet also knows her limits too.  Sal just adores her.  Her first question when Aunt Jill was to go home that day was:  Is Aunt Jill here?  And second was:  Did she take her cookies?  :-)  

Sal knows what's important in life. 1. Good People 2. Cookies   :-)

Oh, School, School, School

Listening to my usual commie (is that how you spell it?)  radio talk show- a teacher called in and gave her opinion that the school system started going downhill in the 80s when parents were told they HAD to start being advocates for their children and to be a part of the school system.  As everything in this country we take something good and reasonable and go ALL THE WAY over to the other side. 

My life being strange as it is - I got a call from Jr High - where Jack will go next year - about Honors.  Jack's 5th grade teacher thinks he should be in Honors next year or he will goof off and cause problems.  Here's the deal, though:  his test scores that they use to place children were all OVER the place!  So, as I talk to the teacher in charge of placing him, I'm thinking SHE knows BEST.  *I* have NEVER placed someone.  *I* have never seen how children with these types of scores do in these types of classes - let alone *I* have never even read statistics in this. 

Soooo, long story short - Jack is in Honors in Science and everything else is "regular" - and intervention in L. Arts!   CRAZY boy!  I have so much concern for Jack.  I don't want to overwhelm him but I also don't want him cutting up and making every one's (including me - the important one) ;-)  life hell.  I explained to the teacher that I don't care about the "identification" of Honors - that I want to HELP make good decisions about his schooling and that I'm looking to her - a LOT to share with me her perspective.  (I do think I heard her body thump on the floor as she fainted)  ;-)  

Ask me about the Jack at home - I'll tell you - he's picky - he most definitely doesn't like to try new foods, hates the thought of vegetables in contact with his person.  He takes a bath or shower every morning - mostly to warm his little scrawny body up.  He LOVEs wrestling and Ghost Adventures.  He doesn't care to read a lot - but will gladly cuddle up to you as you read (after badgering him into doing it).  He still calls me Momma.  He cries whenever we talk about heavy subjects.   He LOVEs to argue with his sister.

Now, about Jack at school.  Well, I don't know a lot - except what I'm told.  And truthfully he's kind of different.  THEY ALL ARE!  Sooooooo - how am I to "know what's best for him" and fight till the death for something I know nothing about.  Wouldn't that be like taking him to the Doctor and arguing that no, he does not have strep throat - *I* know what he has.   But in the parent world you're made to feel guilty if you don't go in with guns blazing and get exactly what *you* think you should for your kid.  So, I ask - does that follow through life?  Do I follow him on job interviews and fight for the job *I* think he should have?  If a Cop pulls him over - do I go to court and fight for how fast *I* think he was going?  Do I interview his dates for the one *I* think would be best for him?  (I think Sal may be thinking that will be her job)  ;-)  

Don't get me wrong.  There are teachers out there who may be of no good - but they are SO very few, and even the ones I really didn't care for never gave me the impression that they were TRYING to hurt my child.  In fact, it was ME who had the problem - my children LOVED them and flourished with them.  I think parents need to be involved and working WITH the school - but also be able to STEP ASIDE and let them WORK.   

Dang, it's been a while since I've been fired up.  :-)  So, I'll get down off the soap box now.  Your turn.  ;-)

Thursday, March 08, 2012

Jinx!

Oh, how I hate to even say this out loud, for fear I will jinx it - BUT - it appears we are on the tail end of Sal's "side effect of birth control pill" period.  It's now day 14!  I've called the Dr twice.  He assured me this is a side effect sometimes in the first couple of months that the pill is taken.  I tell ya - it's been rough here. 

She's had the worst days at school lately too.  I can't believe it's not a co-incidence.  I just pray that this is the last of things I have to deal with where I will have no idea of what's going on inside her body.  (yeah, fat chance, huh?)  ;-)

So, we started Soccer last night.  First time - first practice.  I think she was a little surprised that she's gonna have to run all game.  Someone suggested to me that if she's the goalie she wouldn't have to run.  That "Friends" episode flashed though my head with the game show questions by Ross:  "When Monica was a goalie in school what was her nick name?"   "Big Fat Goalie".   :-)   Oh, I joke.

It dawned on me this morning that Sal's schedule is now daily.  Mondays=Swim Team, Tuesdays=Boccie Ball, Wednesdays=Soccer, Thursdays=Bowling and of course Social Club on some Saturdays.  :-)  She is a happy girl when she's involved.

Last night she was greeted by Aaron (from basketball) and he was excited that he would see Sal on Tuesdays (Boccie ball) and on Wednesdays now.  :-)  He's such a nice "kid". ( I have a feeling he's really in his late 20s or early 30s.) 

Jack, on the other hand, has decided I'm his personal assistant.  His class takes a walk through the neighborhood after their ISAT tests in the morning and usually walk by here.  (Mabel LOVES it - howls the whole time she can see them) Anyway, he asked me last night if I would make cookies and have them ready when the class walked by and then stand out at the sidewalk and give them out as they walked by.  Oh, the boy is really delusional.  :-)  Needless to say, I will NOT be making cookies - yes, I am the worst Mom in the world!  ;-)
 

Sunday, March 04, 2012

You Ma'am, are a LIAR!

Yep - I am.   We had a swim meet scheduled for Saturday and I had to lie to Sal and tell her it was cancelled.  :-/  We're having some side effects from her birth control pill - as in a period.  :-/   It's pretty heavy and there's no way for her to swim with it and well, I'm a great Mom but I draw the line at inserting a tampon. 

    The real kicker is that the meet was the one that determines who will go to State in the summer. Plus I was sick (again) this weekend.  I don't know what it is but sickness seems to really hold on to me lately.  So let's just say my faith in God being so *good* "all the time", is about to the limit right now. 

I know things could be a lot worse and if that's the worst thing that happens - well, our life is pretty good.  But it just ticks me off.  Like one more check mark on the "Things Suck" list.  :-)  

She did well with the news - the only thing is I didn't really think it through.  The other kids on the team will prob be talking about it at practice.   I should have said she couldn't go because *I* didn't get her physical in on time.  (she knows you have to have a physical and paper signed by Dr each year).  I have to admit that I lie very horribly.  (even though my Mom would prob disagree about that one). 

She went with us to Jack's game.  ..... Jack - Jack has really stepped up lately.  Like I said - I've got some kind of malaria-flu-cold thing going and on Thursday night I went to bed early.  Bill had a meeting at Jack's school about a field trip they're going on together and before he left he put Jack in charge. 

I emerged from my room around 8pm and told Jack I was going to take a bath.  "Ok, Mom - Dad said *I'm* in charge".  :-)   But that stinker really did a GREAT job.  He put all the dinner left overs away and cleaned up the table.  He READ with Sal and I only heard raised voices once AND he got her water and stuff and put her to bed!  I was really impressed and told him so.  It's funny how he always wants attention but when you really give it to him he sluffs it off.  ;-) 

So I'm a little better - I can at least blow the crap out of my nose and sit a couple of hours without coughing so Sal and I are going to attempt the grocery store.  She really enjoys that so her weekend wasn't a total bust. 

She's really good at knowing that we need fig newtons and granola bars and craisens and even coffee.

Thursday, March 01, 2012

So Here's the Latest

Something that has always been a problem has really come to a head lately:  Sal is the WORST at telling you how she feels.  #1 - she has my Mother's "I will myself well" thing.  "I'm not sick,(cough, cough, spit, cough)  #2 - she hates to miss ANYTHING .  #3 I swear she thinks being sick is a punishment.    Up till now, this hasn't bee TOO much of an issue.  Honestly, she does come from pretty healthy (and let's face it - hearty) stock so a cold doesn't really bring her to her knees and other sickness usually has some outward signs.  She's not been on any medication - so we didn't have even have side effects to consider..........

ENTER - Her period.  :-(   Now, I have no idea about cramps, headaches, you name it and to top if off - I put her on the pill to help "schedule" the periods and we're ALL messed up. 

If asked if her tummy hurts, her head, or her "privates" you can be sure you will automatically get a "no".  So here's my idea to improve on God's "perfect" plan.  If you're going to make a person that has absolutely NO use for a period - why can't you then give that said person some kind of gage - a barometer or something that buzzed when they were feeling something that needs some attention or at the least would help make sense out of the weirdness that is seeming to accompany all of this.  Then again - she could just be going through something that has absolutely NO baring on this at all! 

There is a story from my family about how a friend of the family came to our house one day to give me a birthday present.  It was a puzzle and as I opened it (in front of said family friend) I announced (in my big outdoor voice) that I didn't LIKE puzzles.  And as they tried politely to ignore my nasty behavior I became more and more adamant that I did NOT like puzzles.  Knowing my mother it probably ranked right up there with her most embarrassing moment.    But can I just repeat again:   I DON'T LIKE PUZZLES!!!!  It's like some wicked way of getting back at me for my assertiveness as a child. 

It's funny but it's not when I think that Sal could be in pain.  That if I only knew I'd be able to fix it.  Sometimes it just doesn't seem fair that with all the crap that we go through - it just piles on and on.  Granted there are others with far more problems and God knows I wouldn't change places with anyone - but DANG.  Sometimes I just look to the sky and wonder just what kind of sick sense of humor all of this is serving.   Ugghh.

So enough of my pity party.  Have I talked recently about how much I love the teachers that surround Sal.  And no, I'm doing this because she reads this blog (well, not totally).  ;-)   I can't express how much I'm going to miss Humphrey.  I think I said that about JES too and hopefully I'll say it about BHS. 

Through Sal's winning of gold at the State Winter Olympics it has become very crystal clear to me how very special these kids are and how you really are honored to be in their lives.  Even though, as evidenced by the accompanying story it can be a very bitter-sweet honor.  I've met the very BEST people on the face of the earth - and it's all due to Sal.  I've learned some MAJOR life lessons and have come to appreciate things I never though I would.  Through my life with her I've been able to understand the joy of a mother who was WAY excited that her kids said "Piss off" because for 14 years she couldn't make the P sound.  ;-)   There's something about that the "normal" people will NEVER get. 

Standing in line with Sal waiting for snowshoe line ups and seeing children in snowshoes using walkers on skis.  Children skiing and using guide dogs .  It's amazing - a most wonderful world of REAL.  No pretensions.  No fakeness.  I am a very lucky person to get to be a part of that world.  And as she goes through these trying times I guess I need to remember that more. 

Sunday, December 04, 2011

A Weekend to top ALL Weekends

Well, it's been a weekend to remember.  Sal got her period on Saturday.  Nature sure has a wicked sense of humor.  How does one who STILL has problems in the toilet and has accidents still (at 14) get a period?  I mean it's something she will NEVER use. 

She thought she had pooped her pants and when I told her no, she had her period she began to cry.  "I don't want my period".  She said it so matter-of-factly, like she could *will* it away.  She was ok - because we were soon on our way to a Holiday Fest with the Fox critters.  :-)

Sal did her usual Obi One "use the force" thing on Friday night.  She was getting ready to go to the Jr High Winter Carnival and told me "I'm going to win a fish tonight". 

Sure enough, she came home all smiles with her chubby little hand holding on to a plastic bag with a tiny goldfish in it.  She reported that she had played buckets, bingo, soccer, and wrestling.  I was curious about the wrestling and when I questioned her further she told me she had beat a boy.  :-)  (poor boy). 

After our fun with the Foxes we came home and Sal had to immediately leave for caroling with the Special Needs kids.  If you know how Sal sings - it should have been a *lovely* performance.  :-)  The saving grace is that they caroled at the Nursing Home - so maybe the hard of hearing escaped Sal's melodious voice.  And God knows everyone is melted by that smile of hers.  ;-)

Mrs E stopped by in the afternoon - totally shocked me.  She's Sal's social worker and big part of our team.  She had run into Bill in the morning and he had told her of Sal's new found "womanhood" and so she came by with a little giftie for Sal.  She also called Mrs P - team leader and shared with her.  They were both so excited.  Isn't that nice?  I don't know what it is but we have ALWAYS had the very BEST teachers and team though Valley View.  I  swear - it's like the Sal is not only mine but the whole community's.  SO many people care about her and go out of the way to show it.  Really made my day.

So the day I've been dreading for about 2 years is finally here and over.  I'll be going to see Dr L about putting Sal on the pill or shot or what ever.  My Oct List told me of shots every 3 months in which you don't have a period at all.  I'll also be inquiring at what age we could think of hysterectomy. 

Sal has done really well.  We have just one more hurdle - we swim tomorrow, so we'll see just how bad things are "down there" and *if* we can swim.  :-/  If we have to cancel THAT - she may be ready to do the harricarry.   :-)  

Monday, November 28, 2011

It's *that* time again.....

Oh, how I love Christmastime.  And by Christmastime I do mean the days between November 1 and January 1.   :-/  Gotta love all the Christians whose only problem is that someone dare tell them that there were actually others in the Country who - God forbid - celebrate something other than Christmas!  There is SO much wrong with this I can't even count:  First - if you're really Christian - which means you try and live as Christ lived - you wouldn't get SO upset about something SO trivial.  Christ was nothing if not tolerant of others' feelings.  Christ was at the base someone who despised material goods so to honor his birthday with material goods seems well, un-Christlike.  The "Christmas" tree was actually brought into the whole Christmas celebration to INCLUDE the pagans who decorated trees at Solstice. Since we have now started celebrating Christmas for more days than just the 25th - I see it as perfectly normal to say "Happy Holidays" because there are MANY days in there! Oh and as far as someone being UN American if they don't celebrate Christmas -

"The first century of colonial life saw few set times and days for pleasure. The holy days of the English Church were as a stench to the Puritan nostrils, and their public celebration was at once rigidly forbidden by the laws of New England. New holidays were not quickly evolved, and the sober gatherings for matters of Church and State for a time took their place. The hatred of "wanton Bacchanallian Christmasses" spent throughout England, as Cotton said, in "revelling, dicing, carding, masking, mumming, consumed in compotations, in interludes, in excess of wine, in mad mirth," was the natural reaction of intelligent and thoughtful minds against the excesses of a festival which had ceased to be a Christian holiday, but was dominated by a lord of misrule who did not hesitate to invade the churches in time of service, in his noisy revels and sports. English Churchmen long ago revolted also against such Christmas observance.
Of the first Pilgrim Christmas we know but little, save that it was spent, as was many a later one, in work."

The whole "season" makes me so very depressed.  All the hype, all the running around, all the mandatory happiness.  Oh, and if you DARE voice your dislike of this most wondrous (made-up) holiday - you would be best to disrobe and take your lashings like a man. :-)  

And so it starts - I try and hide my disdain from my children at least - this IS the greatest holiday for children.  But I certainly don't go overboard and try very hard to instill in them some sense of tolerance and that there is in fact OTHER people in the world who don't march in lock-step and actually celebrate other beliefs AND that those people actually have VALUE!   I did get to see last night that my actions are not all in vein when Jack reminded me of a song that one of my friends (a Jahew - gasp) sent to me and I shared with Jack.   He told me he got to learn that song on the guitar and I was proud - maybe MY kids will be at peace with Christmas, there's always hope.

Saturday, October 08, 2011

Cops: Bolingbrook Flag Football

Yep, that's right - Cops make an appearance at Jack's football game today.  Ughhh.  "Grown Ups" - the name is HIGHLY subjective!  Just makes me sick.  Here's the scoop.  We're undefeated.  In fact today is the only day any team has even scored on us. 

At the end of the game the other coach thought he still had time to call time out - he did - I don't think the ref saw it - who knows.  In the big scheme it really doesn't matter because we ahead more than one touchdown.  But this guy is screaming about it and the ref's go off the field - our coach is trying to talk the guy off the ledge - because after all this is a LIFE or DEATH matter right????!!! 

One of the board members comes over (a woman no less) and he screams at her and says something that makes her throw up her hands - give him that "oh no you didn't " pointy finger and she heads off the field to her golf-cart and drives off.  A few minutes later she returns with more board members and at that time practically the all of the bleachers descend to the field and start yelling at this one guy who is the board pres.  All while our kids are watching, their kids are watching AND the next two teams have started to take the field already!!!! 

I grabbed my kids and left just as I saw a policeman grab the other team's coach as he was running the board pres off the field.  God only knows what happened then.  It's very sad when your 10 year old son has more common sense than the other adults around you. 

Adults really ruin sports for children.  I'm so ashamed of us as a whole. 

Sunday, October 02, 2011

Looking Forward to Less

The weekend's pretty much over and we survived!  :-)  So, the family event:  we met the most AWESOME couple.  It never fails - total strangers are so much nicer and at ease with Sal than people who have known her since birth.  Granted the woman was a speech therapist.  I swear Special Needs people have a 6th sense about Special Needs kids.  We had a GREAT time! 

Went to the Shag afterwards and as I sat around the fire and laughed my butt off after being greeted with cheers and hugs I realized that it's true - family is who you include in your lives.  Those who don't care to take the time for you don't need to be mourned for.  It's their choice and they're welcome to it. 

I've done some real soul-searching and Bill and I have had some great talks and I think I can see the light at the end of the tunnel.  :-)



Friday, September 30, 2011

The Week

I am a parent of a child with special needs. My life isn't glamorous and it is full of hard work everyday. I go weeks before I realize I need a break. But in the end, the gifts of joy I receive with just an inch of progress - are quite extraordinary and in these moments I know we can do anything.

Boy, ain't this the truth.  It's been a week of up and down.  We've been invited to a family event this weekend and it was pretty much said that Sal wasn't welcome.  I have to admit - it stings.  Since I've had time to deal with this - I'm a little less "hot" than I was when the info first came down the pipe. 

Bill says we're taking her any way.  The thing is - we have NO sitter for her.  Let me tell you the last time we had a weekend or even a night away from her:  When I went to the hospital and had Jack.  :-) 

The way *I* feel about it :  Sal is a very special spirit.  You are *privileged* to be part of her life.  Soooo - when you're a butt-munch you don't get the privilege of being in her life - period.  Not when it's convenient for you - not when there's no one around - never.  But I've been out-voted.  At least in this case.

I broke down the other night and really BAWLED.  I think it wasn't only this situation but just the climax of a really weird week.  Sal had several really good days at school and then of course brought the whole thing down with a really NASTY day.   Ugghh.  It's just tiring - the whole up and down - so low and then so high. 

Jack is going to a sib shop tomorrow.  It's where kids get together to talk and do stuff and the one thing they have in common:  they're all siblings of Special Needs kids. 

We also met Sal's teachers for next year.  They had Best Buddies fundraiser night at Culvers and we went - Sal will be getting a Best Buddy next year - and Jim (the owner of Culvers) introduced us to the teachers.  They had heard of Sal.  :-)  It's always amazing to me how total strangers are so much more involved in her life than family.  I think that's what kind of brought me "up". 

So, we'll see how things go.  I'm looking forward to Monday and the end of this weekend.  :-)

Tuesday, September 27, 2011

3 Year Evaluation

Meeting at Sal's school today.  Sal was invited.  By law, she's supposed to be there - I'm still not real sure how I feel about that.  It went well, though.  Lots of tests will be done between now and Dec.  In November we (Bill, Sal and myself) will go to the High School and look at the program (low incidence) Sal will be in.  Then we meet with Jr High again to discuss test results and what we thought of the High School program and then we all meet with High School in January to plan the rest of Sal's school career. 
    Where the hell did all the time go????? 
Sal's at a 1st grade level in reading - prob at a higher level in understanding when read to.  She can do ALL the skills in Math - as long as she has a calculator.  It will be tricky to get true results when it comes to the testing.  Sal doesn't test well.  :-/

     Then we come to the other end of the spectrum.  Jack did very well on his ISAT last year.  He scored above the rest of his school, the district and the state.  He would be classified as an above average student.  I tried to explain that what that meant was he needs to be getting straight A's - no B's.  :-)  
    He's also loving school.  Being a 5th grader he gets a lot more responsibility this year.  He's a patrol and now he gets to go to school early so he can help with PBIS things. 

   I have to say it's very refreshing to have children who really love school.  Both of them have decided that they want flu shots this year so they don't miss school.  :-)  (Sal didn't really get a choice since she is SO anti-no school. )  :-)  

    I'm still amazed at her team.  They love her so much.  It's so nice to work with the same people year after year.  They all go so above and beyond their duty AND they have the patience of Job.   They all had Sally stories to share.  She really makes their day (some days)  :-) 

    Still trying to get the house in shape and get some kind of routine down for me - but I've pretty much accepted that I am to be a stay-at-home-Mom for now.  I think the improvement of the children has something to do with me at home, also.  Or at least that's what I tell myself.  :-)

Saturday, September 24, 2011

Jack Jack Jack

Jack had football games on Thurs night and then again this morning.  I came out thinking a couple things.  1. Adults are idiots.  2. Jack has a bad attitude.  The second I'm working on resolving.  :-)  
     Jack showed his a$$ today.  Pure and simple.  He's been running with the big dogs lately and he's picked up some less than nice habits.  He threw got a shove on the line this morning - got upset because there was no call - started crying - and then threw a fit on the sidelines.  After I saw him (40 yards away) talk with his hands to the coach (he was back talking - you know the motions) I calmly walked over, stood next to him and quietly but firmly told him just what to look forward to if I ever saw him do that again.  Warning given.  I swear that boy will be the death of me - or at least jail for me.  :-)  
     When we got home I told him to go to his room and get comfortable - I needed to talk to him.  He's got a good heart - he really does.  He just doesn't always apply good judgement.  And EVERYTHING is a huge deal to him.  Which......well, is not all bad.  He's ALWAYS thrilled with stuff - the littlest things make his day - but the littlest things also ruin his day.  Or ruin his minute.  :-)   I don't know, how do you tame that but not break that spirit?!  I did my best to explain that NO feeling was wrong, or bad, or unjust - it was the ACTION that he chose that was wrong.  I explained that NONE of us are always in agreement with people who are in charge (ie: coach, boss, etc).  We suck it up - do our best and come home and bitch.  I welcomed him to come to me and bitch anytime and that would listen.  I also explained that the things that he was in like sports and such were a privilege.  That Sal and Dad and I were more than happy to sleep in on a Saturday instead of hauling our behinds out to a football field to watch him throw a fit.  I think I got my point across.  God knows I'll have to repeat myself - but I don't think he'll do the back talk thing again - at least not to the coach.  :-) 

Now about adults.  Same as always - always screaming at kids from the sidelines.  They all scream different things and they all scream abstract things.  "Hold the line".   Really?  Kids don't get that.  Kids are pragmatic.  You have to say "put your arms up and block number such and such - make sure he can't get from point a to point b."  And the thing is all that talk that adults do turns kids off.  Don't we remember?  How stupid other adults sounded when we were that age?  I mean I'm all for cheers and a good "Come On Broncos"  But the absurdly stupid directions that are screamed every game by all the other parents that don't have time to coach but have plenty of time to stand on the sidelines and second guess. ugghhh. 
    Then of course, there's the other team.  We have a girl on our team.  1 She's good.  2 She's smart 3 She's tough and 4 She's really very pretty and slender.  All this makes the other team's fathers nuts.  God forbid their precious baby boys get thrown around by our girl.  :-)   God forbid they get shown up and out "footballed" by this chick.  And the best part about this girl:  She gets on Jack's butt and makes him play better.  I think she can see he does have some talent - he just has no Umpfff and he doesn't apply himself well.  I love to watch her play.   ---- Oh, and her brother - he can throw!  60+ yard bullets are no problem for this kid.  Needless to say - we haven't been beaten and by halftime we always have to hold back on rushing and passing (slaughter rules).   It's a very interesting season. :-) 
     Sal and I sit in our lawn chairs and watch.  Well, I watch.  Sal always brings something to play with.  The other day she forgot and was happy to play with a package of wet wipes, a key chain, a granola bar and a paperclip.  All these items were in gym class and were playing softball.  :-)   For someone who is SO concrete in her thinking she sure has an imagination.  She does really well when she's not constrained and doesn't have to be totally quiet.  It's the total quiet thing that really gets her.  :-)

Wednesday, September 21, 2011

Ancestors

Oh, the things I'll do to get out of housework.  :-)  Yes, I've gotten on to ancestry.com and have pretty much instantly become addicted.  I had a lot of my people and dates from my Mom.  When I called her to tell her I had discovered we were related to Mary Todd Lincoln (on my Dad's side) she told me she already knew!  So was it an aunt or a step-sister of Mary's?  Oh, well, she didn't know - when a person married in to the family she didn't research their lineage.  Ugghh.  So, I'm still researching.  It is a lot of fun and before you know it the morning is gone.  :-) 
    Found the prison record for my grandfather.  He seemed to think it was no big deal to be married to two people - neither of them knew.  :-)  I knew that - the whole family does - hence he was never in my Dad's life.  But it was still wild to see the prison record.  
   Bill's family is a little harder.  Like a lot of them they used the same name over and over with little detail as to who was Sr and who was Jr - so with no dates either - it was a little difficult to decipher who is who - not to mention they came over pretty recently.  His Mom's parents had children almost every year they were married for a while.  Granted some died- but still - pumping out a baby every year...dang.
    So, we've started the guided reading here, at home, now.  Jack and I are reading "Bone Chillers".  It occurred to me this evening that my job is to produce a man who can make a living and hopefully have a decent heart that he sees to his sister.   Now, don't worry - I've got trusts in place for when he isn't so "decent".  :-)   We play football tomorrow.  Jack's team is 4-0.  He insists that I do NOT was his socks.  That's evidently where the "luck" is .  ;-) 
   He's having a tough time of it with the crying and slacking off at practice.  The whole team was behind him at the first cry - but now they've seen though it and have pretty much made fun of him the last time.  He's got to work that one out himself.  I don't have much to tell him that I haven't already.  That child has NEVER made sense.  I swear he cries for the attention - even though he's not getting any.  It was the same when he was a baby - screamed every time he was put in a car seat.  Now, if only once I had let him not sit in a car seat I could see that he would keep up the fit - but never, never did he go without a car seat - still he threw a fit each time.  I guess one thing you can count on is that Jack is always going to be a tough one to figure out.  :-)
  My schedule for tomorrow is get Sal from Lego club at 3:50 - take her to bowling bus by 4 - get Jack to his game by 5:15 and pick up Sal from the bowling bus at 6!  :-)  Oh, it's a fun life!  :-)

Tuesday, September 20, 2011

Finally!

I'm finally back to writing.  :-) 
     So, I've been scrap booking lately.  I was up to 2010 and got that year done - then had to go back to 1998 and keep going backwards.  DEPRESSING!  It's so hard to look at Sal at those ages when she was so little and we didn't know the whole depth of her disability. 
     I admit - I've been in a real funk lately.  Well, the whole year really.  I just can't seem to shake it and I'm not real sure why.  Maybe it's the teen thing that's going on with Sal.  Yes, I'm getting the "normal" teenage attitude (to a degree) and her behavior is getting harder and harder to handle.  Maybe it's the whole stay-at-home-Mom thing.  God knows I stink at it - well the housewife part.  But, slowly but surely, right?
    Maybe it's the getting older thing.  It's so crazy to see and hear about all the kids I've known over the years and how they're all growing up so fast.  I don't know how - *I'm* not getting any older.  :-)
    Just a bunch of crap going on in my life and yet it's kind of blah too.  Lord, who knows.