The Week

HOPELights

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.  :-)

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.  :-)

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.  :-)

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!  :-)

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.