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. 

Life goes on so bleck and then out of nowhere you're cheered

I know it's been a while.  Truth is - I've been in grief.  Same old grief - loss of my child.  I know I've explained the whole wade into the water thing - I know it's hard to understand probably - but sometimes the anger and sadness and worry join forces and get to you for a long time.  There's been a LOT to be happy about - and I am - but I've been down too and it got the best of me.  I'll go into Sal's gold, Jack's baseball, School being out, and more Mabel stuff - but today really needed to be put down in writing. 

Sally came home from school with this piece of paper:

It's hard to see - her aide writes what she says in highlighter and then Sal traces with pencil.  Here's what it says:  Someone I think is a champion is my mom.  She cooks dinner.  She watch tv with me. Wash the dishes.  Take me to camp. 

Ok - I BAWLED at this.  Here's the thing.  You don't get a lot of feely stuff from Sal.  It's even hard to see her as having feelings sometimes - she's so very pragmatic.  Sally also always chooses Jack as her topic of conversation, papers - you name it - it's always Jack.  For her to come up with this about ME - well, it's huge to me.  I want to frame this.  :-)   It really snapped me out of my funk.  Made me realize that she DOES care about the things I do.  

NOT for the PETA Crowd

The following story is humorous but in a very dark way.  If you at all feel upset about an animals' death - skip to another post.  I just wanted to get this down because it kind of demonstrates the dark humor that surrounds my family. 

RIP Tiny

Tiny is my sister's St Bernard.  He ways a good 130-150 pounds.  He is QUITE a character.  Tiny loves to "go visiting"...... BUT - he will only go if he is accompanied by a cat  AND he will only go if it is not too hot.  I kid you not.  The dog has been found a good 10 miles away and EVERY time he is picked up by my sister, my Dad, my sister's friends, he has a cat with him.  If the cat is Miss Kitty she will let you pick he up and put her in your vehicle - where she will MEOW very loudly her displeasure of riding.  If the cat is Ferocious you will not be able to get close to her and she will eventually find her way back to my sister's house. 

Tiny was having seizures and not the mild shaking and then ok for a day or so - it was convulsions and they repeated even in the same afternoon.  This was my sister's dilemma:   1.  Getting him to the vet.  2.  Money for the treatment - which we all know never really brings them to where they were before the seizures - and that was IF they could find a cure.  3.  If she did get him to the vet and they couldn't do anything for him they would want to put him down and how do you get the body back to your house - because she didn't have money to cremate him.  My sister LOVES her animals - probably more than she does her own kids. (if you know her kids - you'll understand that one)  :-)  I know she agonized over this decision.  She finally called her son to come and shoot Tiny. 

She made the call - it was a Saturday morning.  She went out to dig the grave.  Now, Tiny usually never wants to "hang" with people.  I mean - he'll come over for a treat or to be petted but then he's usually content to lay in the garage.  (cool concrete).   Not that morning.  He laid RIGHT by the hole as she dug.  Her son came out to the farm and helped with the digging.  Tiny then has a seizure.  He falls INTO the grave!   They have to wait to finish till he stops and then they have to help him OUT of the grave. (they want to bury him deep enough that other animals don't get to him)  As they dig a little deeper they run into Harley (a German Shepard she had that had got run over).  My sister lives on a 20 acre farm!!!  What are the chances you would dig exactly in the same spot!  They finally finish and she goes in the house while her son puts Tiny down.   It was a very sad day and an agonizing decision - we've all been there - trying to decide what one should do.  When an animal lives outside and is as big as that guy they have to be healthy.  His life would have been very miserable.  The story, though is priceless.  My sister always jokes that she's the kind that will survive the airplane crash but get run over by the ambulance when it arrives at the crash.  ;-)

Death is a big part of life on the farm.  From cats dragging animals home as presents to the dogs bringing home GIANT bones from the cows next door to her.  Not to mention the whole slaughter thing that we, as "country kids" were all too familiar with.  We all knew that meat didn't come in those pretty pink saran wrapped packages.  My mother was a great one to serve cow tongue that still looked like tongue.  She didn't see the need to disguise it - it is what it is. 

It's been my experience, growing up  in a small community, that you have  rather high odds of dying of old age.  Things are changing as they always do - but for the most part death is still very referent.  It is seen as a peaceful end to this very hard life.   It is mostly seen as a blessing because for the most part the mind gives out before that body  does or vice-versa.  Seldom do they give out at the same time. 

Maybe that's why I'm not that jubilant about Osama's death.  I don't see it as justice.  And I certainly don't get the shouts of joy over it.  I feel very worried and a little nervous as to what will happen now or who will become the new target and the fact that now there is but another country where we will always have troops. 
Well, unlike Bin Laden, Tiny will be missed.  He always had that "duh, duh duh" air about him.   And of course whenever you can put your arm out your drivers window and pet a dog - that makes a memory.
:-)

Had a Nice Keaster!

Sal and I took the train from Naperville to Macomb on Good Friday.  Gpa and Gma picked us up and took us to lunch and then took us out to Aunt Jill's.  The ride was really nice.  Sal and I even slept a little.  :-)   Since the tracks don't run anywhere near the road - I was kind of lost until we got to Galesburg and then I was a little more familiar to where at least in the state we were.  :-)

Sal and I highlighted the IL map we had with us and pretty much were able to pinpoint Aunt Jill's house.  Mostly because she lives ON the Hancock/Adams County border.  :-)  

When we got to Aunt Jill's we then got to go pick up Uncle Mike from the Nursing home.  I stayed behind to make the Dirty Pudding (a family favorite - right Mick).   Did I happen to mention that my sister still has her Christmas Tree up????  Now most of us have to re-arrange furniture when we put up the tree - but she doesn't - hardly even takes up any kind of space at all in her HUGE living room.  Soooooo - when she came back she asked me to take it down.  UGHHH!  I HATE taking down MY tree - let alone someone else's.  My answer was - Heck, we've come this far with it up - what's 7 more months??  No dice.  So with Uncle Mike "supervising" (I now know why God decided to throw him from the roof)  (JUST KIDDING)...  Sal and I got it down and upstairs to her storage room. 

That night (Good Friday) we had her kids (Mick and Brad) and their families - with Mick's new family - which includes two 8 year old twin boys.  We had 7 kids coloring 9 dozen eggs that night.  :-)  They had a BALL!  They got along SO well.  Mick's fiance' Trish brought her Mom and Dad and my Mom and Dad came out for dinner so we had a really nice time.  Trish's family is very nice and gets my family's humor - which speaks to their mental illness.  :-)  

Bill and Jack were missed.  They had opening day for Little League on Saturday.  We found out later that they won the game.  But Sal and I had a much better time that Saturday (in my opinion).  My Aunt Jill and Uncle Mike had to go to the funeral home to make arrangements for Uncle Mike's Dad's funeral.  It was really a blessing.  He was 86 and in the Mendon Nursing Home and had fallen several times and the last he had a stroke.  Sal and I were left alone to be farm girls.  :-)  We went out to the pasture and fed and talked to Kitkat (the grouchy horse) and DR (the very cute and nice donkey).  DR will follow you around and nuzzles up to you and starts stamping his feet if you go to leave. He is a character.  Kitkat stands a few feet away and just gives you those "bitchy" eyes.  She's also known to run him off the trough of food, so I don't have a lot of love for her.  We found Ferocious in the stable and even caught a glimpse of Booger in the barn.  We held Bob (cat) and Miss Kitty and played with Chunky then we walked down the lane to get the paper, came back to the porch, rounded up the rocking chairs and sat in the nice sunshine till they came home.  I could sure get used to that.  :-)

Easter Sunday dinner was just us and my Mom and Dad.  Aunt Jill and I had been out to Hebron Cemetery the night before (the Beckett) cemetery and couldn't find Aunt Jess - we must have walked directly over her - as to what Dad described as where she was.  Anyway - we ended up asking all kinds of questions from the "wild tales" that the Grandmas had told me.  I'm 11 years younger than Aunt Jill and she's the last of the "stair steps" (my 3 siblings).  Soooo when *I* came along both Grandmas were retired and I spent a lot of time with my Grandma Beckett - who lived one block from us.  Being only one child I got to sleep with the Grandmas when I stayed over night and I'd always ask them to tell me a "wild tale".  :-)   Aunt Jill was never privy to that kind of stuff because when she stayed with Grandma - there were 3.  ;-)   Ahhhh - it's good to be the baby.  :-)

My Dad told of when the house that he lived in burned to the ground.  That house was located right next to the house my parents live in now - they moved there , from the farm, in the 60s - not too much before I came along.  My siblings didn't have running water - I did.  :-)  That's why they think I'm spoiled.  Anyway, he told of how the entire upstairs was gone and that was where my Grandma and his things were.  They lived with his Grandfather and his Uncle Albert.  Even though he was 16 years old he said he cried like a baby.  It made a HUGE impression on him - to this day his greatest fear is fire. 

My family got a HUGE kick out of Sally.  I never realized before but my Grandma's Mom (Sally) was born in September - same as my Sally.  I guess I did pick the right name.  :-) 

Basketball is OVER!

Had our first play off game last night.  If we lost we were done and if we won we would go on to play for the Championship on Sat.  We lost.  BUT.......It was a game and a half.  Both teams played REALLY well.  We were within 2 for most of the game.  Brad says "It was a defensive battle".  :-)  

I can really see how Jack improved from when we started to now.  He cried twice on the court.  Once when he had the ball and was picked up by a kid by the ball.  And the other - I'm not sure what he was upset about.  It bothers Bill a LOT - but I can see he's trying to work it out.  He's staying on the court - he's trying to get back into the game - he's just got tears.  I think he'll get it under control.  Plus, his coach assured me he has a HUGE heart - that he had the biggest heart on the team.  Well, if tears come with that - I'll take it.  I love that he has such a huge heart. 

Sal did a GREAT job.  She played UNO with her medals the whole game.  She had brought her gold medal and bronze to show some of the people at Johnny Rockets (we had a school fundraiser there before the game) and when we got to the game she asked who could play UNO with her - I suggested her medals would play - the look on her face was so cute.  Kind of like "that's kind of silly - but well, yeah - they could".  So it she stayed out of our hair and no "how much longer" questions.  I praised her and praised her when we were done. 

On a serious note - Jack brought up going to college on the way home from practice the other night.  I was just him and me and he asked what college he could go to.  Then asked what college Sally would go to.  I said that she may go to JJC.  He decided that he should do that too - when I told him that he could go away to college he seemed concerned that he wanted to be with Sal.  So I leveled with him that Sal going to college and him going were two entirely different things.  I broke it to him that she would not be able to be a Dr or lawyer and yes - miracles do happen and things can change but we do have to face facts of the present right now.  He was kind of taken back.  I think he only saw her "handicap" in her behavior and not in her ability to learn.  It saddened me and of course when he got out and went in the house I sat in the car and bawled.  I felt like I had killed Santa for him.  I remembered that little 2 year old telling us how Sally was his hero because she had found one of his toys that he lost. 

On a happier tone = Sal had her IEP annual meeting this week.  She's doing GREAT.  I LOVE my team - and not just because they seem to love Sal.  They work SO hard and are constantly evolving on how to reach and teach her.  She's reading at a 2nd grade level and can tell time and money.  We still need to work on counting change and knowing what you get back - but it's a start.  As we've all known for a long time her understanding is WAY above her level of communication and even that's getting better. 

Sally got to come into the meeting at the end and she just beamed!  She loves school so much.  We got approved for summer school - which we're ALL excited about.  We also decided that she will transition into the "life skills" class in High School and since my team hasn't done this before they want to work very closely with us to get this done.  Loving that! 

Just Keep Swimming, Just Keep Swimming......

I'm so full of emotion I can hardly write.  It's been an amazing day.  Let me back up a couple to let you in on what's been up in our household lately.

I think when I last wrote it was a little down - one of those times in life when Special Needs becomes - well, not so special.  More tiring.  You get worn down, nerves get raw, the world seems to be celebrating and you're cleaning up poop - just prickly.  Sal's kind of been coming into a toddler/teenage (they tell me the attitude is the same) thing.  Screamy in the morning.  ALWAYS picking on the brother in the morning (his most *favorite* time of the day)  and in general being a royal pain in my arse.  Bill wanted me to see about drugs to "calm her down" - but I really think it's a teen-age thing and, sadly, there are no drugs for teenagers(or their parents).   So, I've honestly been white knuckling it through lately.  We did the swim meet a couple of weeks ago and of course she qualified to go again this weekend.

We decided she could go by herself.  The bus takes them all - they have a coach and aide and there's only 3 kids that go (and 2 go by themselves too).  And YES I was feeling guilty.  But not guilty enough to go with her.  Jack had a basketball game and we've kind of neglected Jack in some of the sports things in favor of always being there for Sal....AND her coach assured me she would do great. 

So today started off with a trip across town to put her on the bus by 8 am and then home to get a shower and take Jack to his game.  Yes, the guilt was kicking in again because I was really looking forward to watching a game of Jack's without Sal in tow.  Without having to say "only 4 minutes left" for 20 times.  My brother and sister-in-law had kind of thought they might come and I was looking forward to finding out what's going on with their kids (one in Singapore, one just started basic training and one who is one of those "fat cat" teachers you hear about in the news - but THATs a whole 'nother post). 

When I got back Bill decided he wanted to stay in bed - he's been sick the last 2 weeks and I think it finally caught up with him....SO Jack and I left and got to the game.   Had a great time.  Jack played very well, got to find out all the gossip of the family , Jack's team won and my brother even recorded the game and said he'd send it to Mom and Dad (I still have one of those OLD videos that does the VHS).  So, I got home after the game and we called the swimming coach and found out that we had a couple of hours till the bus would be home.  Bill and I got to sit and talk (I had dropped Jack off at a friend's) without any interruptions.  I headed over to the Park District at the appointed time.  

As I got to the bus, the coach, aide and Sal were all standing outside of it - oh oh.    I no more got out than they shouted "She got a gold medal!"     I think I said something like "you're kidding - no, she didn't".

Ok, that sounds harsh probably - but I did not expect that at ALL.  1.  At the last meet Sal was 4 out of 5 kids.  2.  There were to be more kids at this one because if you get gold you go to State. 

I think it was when I saw the medal hanging on her neck and her coach saying how she swam faster than she ever saw her that I started crying.  (and of course I'm crying now just thinking about it).  Sal, of course was on to the next thing and was in the car before I could say thankyou to the staff and goodbye. 

As we drove home I told her how proud I was of her.  "You are?"  She asked.  "Mabel be proud too." she commented.  I bawled all the way home and she kept looking at me like I was crazy.  ;-)

When we got home she ran in saying "I won gold medal!"  Bill was as stunned as I was and I do believe I saw a tear in his eye.  "We go to Culvers?"  she asked.  Are you kidding?  She could asked for a car and probably got it at that point.  :-)   We called Grandma and Grandpa, Aunts, Uncles, took pictures and posted them on facebook.  As the night has gone on I've tried to figure out just why I'm so touched and emotional about this.  I keep recalling two times in my life:  1.  When the lady down the street told me about her Johnny who was in a home and got money for crushing cans and that he has made $2.25 one day and when I had rejoiced with her she said "Oh, I just knew *you'd* get it.  All my other friends think don't get it.  And the time when Jack was probably 3 or 4 and he stood in front of us with Sally standing behind and "read" (like kids do when they've heard the story so many times they know it by heart) to us.  I remember thinking "how can I be happy when I know you're sister will NEVER do this".  

So, tonight I "get it" again.  Tonight his sister stands in FRONT.  Tonight I see the HOPE.  Tonight I have more faith and tonight I CELEBRATE. 

And lastly - tonight I realize that I am holding her back.  I may need to push a little more.  Either that - or I have to sneak into things - so she doesn't know I'm there.  :-)

Basketball

Tonight was the game between the Lions Club and the JBSRA (Special Rec) kids.  They do this every year.  The Lions Club is a big contributor to Special Needs.  The guys show up and play a game against our Jr and Sr team and then they feed everyone.  :-)  

The game began with one of the Lion's members singing the National Anthem.  About half way through one of the guys from the Sr team went and stood by the Lion's member that was singing and put his arm around him as he finished the song.  I don't think there was a dry eye in the house. 

The game is always a lot of fun because the older Special Needs "kids" (a lot are adults) help the younger ones and really feed them the ball.  The refs always call a lot of fouls on the Lions and not as many on our guys.  ;-)  It's just a great time and it's just FULL of celebration - there is absolutely NOTHING in this world that looks as good as a special needs kid that has just done something like make a basket or in Sal's case, inbound a ball.  Their whole body lights up.  :-)  

It's very hard for me to watch and not just bawl my eyes out in happiness.  There's just SO much happiness in that gym.  What's also kind of cool is we usually draw a crowd from the other gyms and they all stand around and watch.  The Sr team is really VERY good.  They will be traveling downstate again this year to defend their gold title in Spec Olympics.  Bill and I are very tempted to take the kids in March and go watch.  But, being in Bloomington - it's expensive to get a room and food and all and we think it might be best to skip it.  It's such a good time, though to watch those guys. 

After the game the Lions served hotdogs and chips and soda and the kids all sat around and did their thing.  :-)  It's so neat to see them all talking together.  These programs do SO much more than let them play basketball - there's SO much social practice and life skills there.  So we said goodbye to our basketball coaches for the year.  Of course we see them again at Social Club.  :-)  

Stressed

It's been a stressed weekend.  I don't tend to realize how stressed I am until it's over.  I think I go on auto-pilot.  I did this during labor too.  Almost like you're in shock.  Anyway - when I get home and the day is "over" or it's the next day like now - I feel wrung out and very tired and like my nerves are standing on end.  And maybe because it's not "over".  She's almost more keyed up when it's over.  The screechy voice is out in full force.  She can't be still at all.  She's all over the place.  I really wonder what goes on in her brain when she's like that. 

Back to the Swim Meet.  Sal got 3rd in her heat.   She did 50 meters freestyle this time.  Her first time to go down and back in the pool.  She did REALLY well.  I'm so proud of how she swims.  She smiles and almost waves as she does it.  :-)   She LOVES the water.  She chose Swim Meet over Social Club this weekend.  As we were driving home from the Swim Meet she said "They went to Social Club without me, didn't they?"     "Yes, they did," I said.        "They miss me. "  Sally said.    "I'm sure they did, Sal."   :-)   

Grandma almost cried on the phone when we told her.  Grandma doesn't swim and is scared stiff of the water - swimming lessons were the ONLY thing she put me in.  It was THAT important to her.  So for Sal to conquer the water is a big deal to her.  *I* love the water and am SO pleased that Sal has followed.  When she goes to practice, she swims the ENTIRE hour of practice.  I'm always amazed at her stamina. 

Water IS the great equalizer in Special Needs.  A LOT of the kids that CAN'T walk, or talk, or do anything "typical" CAN swim.  It's SO cool to see them lowered into the water in a chair or see them take the lead when their hands cant move - but those legs can kick like hell.  SO much we take for granted.

I got a letter this week from a friend that asked about what Sal will do when we're gone.  And I've said here before that I pray that I will live one day longer than her.  Sal's ok financially and hopefully will be able to live on her own with minimal help (that's my goal) and hopefully hold a job.  The government provides for 100% insurance (SSI) for her when she reaches 18.  The thing is she can only hold $2000 in assets.  So Special Needs families have to set up a Special Needs Trust.  It is like a business in that it has it's own federal ID number and is separate from Sal's SSN .  Ours will be funded when the last one of us dies.  We have "2nd to die" life insurance.  My Mom and Dad have also willed money to Sal and made it to go to the trust.  It was a whole hairy mess  - we had to have a special lawyer - not all lawyers are acquainted with Special Needs Trusts.  But our Financial Advisor (who also happens to be my Mom and Dad's) worked with our lawyer and got it all straight for us.  It's such a pain in the ass.  Now I just have to watch any salary from any jobs she gets and make sure we don't go over the amount. 

We have named a bank as the executor of this trust.  They will have say over what Sal will spend money on AND they will account to shareholders of how the trust is doing.  It *sounds* more complicated than it is.  I've listed out what I want for her funeral and what I think she should have as far as wants.  We always joke that Jack would be a LOT nicer to her if he knew how much she'll be worth someday.  :-)  

Special Needs is always an adventure from Dr's visits to playground play to even future planning.  Nothing is every *easy*.   I remember how it FREAKED me out so much at the beginning.  I mean EVERYTHING has to be planned and thought through.  I'm not as freaked as I used to be.

In Culver's yesterday (our treat after ANY sports function)  Jack and Sal were at each other and Sal screamed - just a short burst - nothing major.  A lady looked at me and said "He screams like a girl"
"That's because she is,"  I said "And she screamed because she has autism and isn't always good at minding her social skills."  ( I wanted to add ; like you obviously aren't so good at social skills either - because we usually think before we speak)  :-)   I have to admit - sometimes I LOVE to put people in their place.  I LOVE to see the dropped mouth and stupid look.  I want so bad to say "yes, I know you were judging my parenting and I know you were thinking you were superior - but maybe you need to back off there, sparky"
:-)   Granted, Sal does look like a boy - the short hair the non-girly clothes, I get that a lot.  It was the look on the lady's face - that *she * could do better.  The "um, um, I'm sorrys" are always great.  :-)  I have to admit - sometimes I'm catty.  :-)  But it's usually warranted.  :-)

2 days off of school this week.  ugghh.  I was HOPING it was going to be nice outside.  Doesn't look like it.  Means Sal and I will prob be sick of each other by Wednesday.  :-)   I know I get on her nerves as much as she does me.  And maybe that's not all bad.  I think that's a "normal" daughter thing.  :-)

Rough Times

When Sal was a baby and she would wake me in the night I often sat there with her with a real wonderment of how I could love something so much that interrupted my sleep and that I didn't even get upset about it.  That always amazed me that I never felt angry or ticky at her for getting me up time after time after time.

I thought back on this time tonight as I was once AGAIN showering her off because she had had an accident.  Those days are gone.  She can bring me to tears very easily - and I know that it really is no fault of her own.  She can't help it today anymore than she could as a baby - but it's been 13 years, she DEMANDS now and she's NOT little.  :-)   But the wild thing is - she's still just as innocent. 

Oh, for a look into that mind.  I'd give anything - my kingdom for a look into her mind (and a coffee pot that pours correctly)  :-)   

My Mom called today and told me about a friend she was concerned about who's daughter doesn't engage in conversation.  (She's has aspergers syndrome).  My first thought was "and the problem is???"  :-)
I had had a day (WEEK) of non-stop talking. Non-stop questions.   I opinioned that we could bump the girls together and see if they could get a little of the other.  :-)   Everyone has their own cross to carry.  Mine's just a little heavy tonight.

We had planned to go to friend's house and autism, once again, got in the way.  And as I sit here a little irritated that I didn't get to go (feeling like Jack who pouts and stomps)  :-)  I also have to laugh at the girl who sits on the couch after being bathed and hair washed and teeth brushed saying "I love COPS" as she watches the show.  ;-)   And once again I am humbled by this crazy creature that evokes so many emotions in me.  This person who is such a mystery yet such a constant.  Someone who seems to know what I'm thinking so much that it's scary yet cannot even blow her own nose.  :-)

Sad

My cousin's 12 year old daughter died last week.  Her obit was in the paper today.  It was really lovely.  It's so hard to wrap your brain around kids' deaths.  Sal and I had seen her at a gathering we had for my aunt this fall - she was so good to Sal.  Helping her roast hotdogs and marshmallows.  A real sweetie.  Crazy how quickly life changes.  She had meningitis and was actually starting to get better, but that was not to be. 

So, I'm sitting here with a sympathy card in front of me and I have NO idea of what words to even put down.  How do you even start???  To me that HAS to be like hell on earth - to loose your child.  Even though I pray every night that I live just one day longer than Sal - what I mean is for her to live a nice long life and for me to be there for her the whole time.  Just brings the whole me leaving her front and center more and more.

I've decided not to tell Sally.  She didn't know Megan all that well.  We had just been with the whole family the one time that she remembers .  As it is, Sal has this phobia of being sick.  She insists she's NEVER sick.  (when you're sick you have to stay home from school)  So, I don't think telling her that Megan got sick and died would be a good thing.  Too much unnecessary anxiety. 

On a very weird note - my guided reading group is reading a book in which the one of the characters (a 12 year old boy) died.  Talk about bringing things full circle. 

Life is Good

There are times when things are really good.  Nothing big that happens - it's just that things are running pretty well.  Oh, sure the house is a mess (as always) and there's laundry to be done, but everyone is happy.  They're not bickering, homework is done and dinner doesn't have to be made for a while. 

Sal got her report card today.  She's on 1st honors again.  Which in Sally world is all about Celebration of Success.  This is kind of a "party" for all the kids who have made honor roll.  They have it Friday after school and have a DJ and refreshments and games and just general merriment.  :-) THIS is what's most important to Sal.  :-)

I had a meeting with her teacher yesterday and we talked about high school.  Even though Sal won't go for another year - she wanted to get my feelings about a class called "low incidence".  It's basically a life skills class.  She'll learn to cook, do laundry, grocery shop, ---- hey - maybe *I* should go.  :-)

Swimming last night - Sal's gonna compete in 50 meter free style -  which means she'll have to do 2 lengths of the pool.  She's pretty excited.  God, she loves to swim. 

Jack has been in an exceptionally good mood lately.  I guess I haven't ruined his life this week.  :-)  He got his braces off and retainer put in.  He's none too happy.  He says the retainer is worse than the braces when it comes to eating.  He looks so nice, though.  No more gap or little narrow ferret face.  :-)  

We had an interesting basketball game again last weekend.  The game before us was FULL of butt-heads lead by a butt-head coach who insisted on being ON the court through most of the 4th quarter and yelling.  The ref's had to stop the game several times.  There was many heated exchanges between ref and coach.  When we get to the games I always let Jack go sit with his coach and team so after these exchanges I headed to where Jack's team was sitting and called him to come sit with me so I could de-program all the drama that was happening.  I did my very best "I'm so embarrassed that grown -ups act this way" face and talked over and over about how would he feel if that was Gpa or Uncle Brad or Uncle Mike out there ref'ing.  Wouldn't he be angry that someone yelled at them like that.  I also went on to talk about if you're going to get that upset about calls then you need to scream about how small the hoop is and how the court is too long.  IT'S ALL PART OF THE GAME and when you decide to PLAY the game you accept EVERYTHING that goes with it!!!!  I've just NEVER understood the whole yelling at ref's.  I've also never understood the whole "blame the ref/umpire/line judge - for YOUR problems.  If you are SOOO good then you shouldn't even be that close in score that a single call can make or break it.  As you can imagine I got a lot of looks from Jack that pretty much said "are you done talking, yet?"   :-)  But, just like telling him to brush his teeth and not to run in the house - I keep plugging away .  :-)  

Been having a GREAT time at school.  I have a new guided reading group.  There's 6 in this group and they're SO talkative!  We have the best talks - they really seem to get *into* the books.  I'm also in charge of reading to Jack's class each month.  I haven't found anything for Feb yet.  It needs to be short - but not too short.  And preferably something on the subject of what they're doing in school.  No pressure.

Between Sal's swimming, hip hop jazzersize, bowling, basketball , social club and Jack's basketball games and practices - I'm always amazed that I'm where I'm supposed to be each day.  :-)  It just feels extra good when things run smoothly like it has been lately.  It's the little things......

The Games We Play

It's been an exciting week.  It started on Saturday morning.  Jack had his first basketball game and then Sal had a game.  QUITE a trip to watch 8 year old "typical" boys play and then turn and watch a Special Needs game.  We should ALL play more like Special Needs. 

On Saturday, I saw "typical" children ARGUE with refs (I remind you they're 8!!) At Sal's game they THANK the ref for the call. (it is really cute)  I reminded Jack that I had NO shame and would most definitely drag his butt off a court in front of God and everyone if he so much as rolled an eyeball at a ref.  :-) 

I saw parents SCREAM at "typical" children to do this and do that and "not take that from him".  At Sal's game we cheer for BOTH teams because there's nothing better than the smile of a Special Needs child who has made a basket.  Let me remind you that MOST of the Special Needs team has some sort of limp or frozen arm or a sensory to noise.  So just running is a big deal - heck - if you can dribble - you're pretty much the star of the game.  :-)

I saw coaches and parents of the "typical" kids act SO seriously about the game that you would have sworn some one's life depended on it.  At Sal's game she asked in the car (after the game) "I win?" 
No, I said - you didn't.  "Oh, we go to Culver's for lunch?"  was the reply.  LOVE that.  :-)

Now, you tell me - who is more "handicapped".  Seems to me we do a disservice to "typical" kids.  We put the emphasis on the WRONG things.  Games should be a hobby - a pleasure - not LIFE.  Games are a way to spend an afternoon.  A way to prove to yourself that practice can make you good at something.  It shouldn't be a WAY of life.  So how do we change things?  How do we make it so basketball players earn LESS than our teachers.  That our kids DREAM to be policemen and not football players that fight dogs.  I guess it begins at home.  And poor Jack, he gets to hear his Mom go on and on in lectures about such things.  :-) 

So This Is Christmas

So Christmas has come and gone for another year.  I think my dislike grows each year.  My children are still bright lights in the whole ugly holiday. 

Bill and I put up the tree this year while they were at school and left all the ornaments - which are mostly theirs that have been given to them through the years.  They had the best time getting them all out and putting them up.  Jack, is like my Mother and spends time with each ornament talking about where he got it and who gave it to him.  Sal just likes to open them and then hands them to someone to put on the tree.  :-)

The advent calendar was, as usual, the bane of my existence in December.  We do it first thing in the morning - this is the way it started and God forbid you change "tradition".  :-)  So, this brings them from a sound sleep at the dawn of day - like some internal clock.  Then I am at the mercy of whatever evil plan my Mother has concocted.  This year's booty went from Push-Pops to guns that shot foam rubber discs.  Because nothing says Peace On Earth like a disc to the head.  There was also a puzzle with the smallest pieces I've ever seen and when putting it together the boy wondered (out loud) if Grandma had purposely left out a piece because there was one missing that just couldn't be found. (it was later found - under the very chair the boy was sitting in)

Santa was a hit as usual.  We tracked him on NORAD .  On Christmas Eve (day) we went to Dick and Laurena's and saw that Santa was almost at Dave's house.  Dave lives in Singapore now, and it was fun having someone "over there" the kids knew that showed how Santa does it all. 

Had a GREAT time at Uncle Dick's.  They now have 3 boxers.  Peyton, Stewart and now Addison - who, is deaf - and all white - like albino white.  Then we added Zoe - Bob's girlfriend's dog to the mix - she's a Pomeranian.  They are SO funny to watch.  I wonder, though if they've had Addison checked - I mean - Mabel ACTS likes she's deaf too.  :-)

The two weeks off were kind of hard on Sal - the lack of set schedule is hard for her and she becomes anxious.  Then she talks and talks and asks the same questions over and over and over, it's a vicious circle.

What is it with Parents?

Had the Special Needs Christmas Party yesterday.  I know I've talked about this before - but I just totally LOVE this party.  The Knights of Columbus put it on - we have lunch, EACH kid gets a gift (up to $40!!) and there's cake and ice-cream, choir caroling, and of course SANTA!  Don't get me wrong the food is OUTSTANDING, and the gifts are VERY nice - but the things I like the best are that we get to see all the kids that Sal has been participating with and we get to see that our cross to bear could be a LOT worse.  There's kids there in wheel chairs - kids that eat through a tube - kids that can't talk - you name it.  The very BEST part is ALL of those "kids" (some are in their 20s and 30s) rush outside to see Santa arrive on the fire truck!  The smiles and squeals and cheers are deafening!!!  It's just sheer, unbridled joy.  They don't care about what the look like, they don't care that society thinks they're too old to like Santa, they don't care that it's not "cool" to show joy.  God, I LOVE that!!! 

We have the best time mingling around and talking to everyone about how they're doing.  Everyone knows Sal and we of course know most of the kids - and their parents are always ____'s Mom or ____'s Dad.
:-)  WE don't count - not in this world - it's the kids that count. 

Sally got 3 gifts!!!!  Moon Sand, Moon Dough and Legos!  She was SO pleased.  She decided that Jack should get the Legos.  She gave them to him.  Jack didn't come with us this year.  He chose to go to the neighbors.  I didn't fight him.  The party is ALL about Sal and he's done well with that for many years.  But, when Sal decided to give him the box of Legos she said "I'm a nice sister, aren't I Mom?"   :-)  Classic Sally.

So here's where I get on my soapbox.  We sat with 2 women who are notoriously bitchy about EVERYTHING.  We sat down at a table that wasn't full and sure enough these two sought us out.  Ugghh.  I've had run ins with them before and it just amazes me every time how UN grateful they are about EVERYTHING!  The soup didn't have enough chicken, where was Santa, didn't their kid want the hard-cover book instead of the paperback that he got, and of course the minute they get their gift - they're out of there.  Now THAT'S teaching the kids some GOOD stuff!!!  I just want to shake them!  At one point they even started talking by name about a friend of mine.  I had to leave the table.  I'm NOT good at listening to bad things about friends of mine.  I tend to jump in and get a little obnoxious.  Since I'm not too good at controlling that - yet - I get out of the situation. 

It's almost like the *parents* are the ones with the special needs and they instill that into the child.  It's like this label is their invitation to be jack-wagons.  We *loudly* talked to Sal in front of these "ladies" about how the guys in blue (the Knights) were the ones that did all of this - that they raised the money it took (by selling those tootsie-rolls) and made the dinner, did the shopping, set up the gym and then took it all down again.  I know it went over their heads, but you keep trying. 

Sally told Santa thank-you and clutched her goodies with a death-grip all the way home.  We all decided that we had had a good time.  Daddy and I in tears - as usual.  You just can't be around these kids for too long without being touched to the very core of  your heart.  There's so much joy, so much hope in that room.  Even in spite of the "jack-wagons" in the place - the raw joy and love just conquers it all! 

These Are the Days

So, I just finished re-reading Anne Frank's Diary.  We read it in HS and though I did get a lot out of it then - I think I appreciate it even more now.  I also stumbled across the Anne Frank House on the web.  It has a virtual tour you can take of the house - and it has made a profound impression on me.  I go back to the web almost every other day almost "checking in" on Anne.  Crazy, I know.  I don't know WHY this book got to me so much this time.  It's not my kind of book - except for the history of the thing.  I mean, it doesn't "flow" like I like.  Because of the translation it doesn't even create the greatest of pictures - not like some of the books I read.  Anyway, I think about it all the time.  Unlike books that "come alive" in films (which almost always suck compared to the book) this book "came alive" in truth for me with the tour.  But on to the other tales of my life thus far.  :-)

Sal has taken on Snow Shoeing as a ....... hmmmm - here's the deal with Sal - we sign her up for almost everything she expresses interest in through the local Park District.  They have a FANTASTIC Spec Rec staff and I see this as therapy for Sal.  OT, Speech, PT - it's all there and done by people who are really trained as well as any therapist I've ever met AND are MUCH more reliable, so , is it a hobby?  Therapy?  Project?  I don't know - we signed her up.  Sal has a thing where cold does not bother her near as much as a typical person and when she was younger you kind of had to watch her because she just never wanted to come in even when she was getting dangerously cold.  So, this seemed like a perfect fit and as usual - She loves it.  :-)  AND she's pretty good at it.  We all meet at a park in Downers Grove and they all stomp around in the snow and Jack plays football for the hour.  *I* sit in my nice warm car and read. In the *wonderful* quiet.  :-)

December has descended on us and as usual I am out of sorts.  I just really really hate Christmas.  I hate the colors, the garland, the tree.  It almost makes me a little queasy.  The hypocrisy of buying SO much and going to SUCH extent to celebrate made up birthday of a person who was so NOT what Christmas has become.   And in fact what it does is usually makes people feel inadequate, unprepared and a lot of times very lonely.  I've decided I'm much more a Jew than a Christian.  Getting out a Menorah seems SO much nicer than dragging out all that Christmas crap.  :-) 

I have a friend on the Oct List who is Jewish (there are several on the list) and I have been following her Hanuka celebration this year.  She has 8 kids and they are having a ball and guess what - NO DECORATIONS!  Their celebrations seems so much more genuine than the Christmas ones I've known. 

A friend of mine was surprised that we only get our kids two presents - one from Santa and one from us.  This is exactly what I mean - it's not "good enough".  And speaking as a mother of  a little boy who is having a hard time being grateful for what he gets now - I need not give in to that kind of thinking.

Yes, Jack has been a pip lately.  Every time he doesn't get EXACTLY what he wants or things don't go EXACTLY how he expects he throws a fit.  The only GOOD thing is that through these little fits and the latter punishment he has learned to say he's sorry.  (and he's getting good at it - see practice works)
:-)   He's MUCH more upset by changes than Sal is.  Drives me crazy.  And the thing is - we don't have THAT many changes  - because we are a Spec Needs family. 

Jack is also expressing more and more anger that Sal is "different".  He confided in me the other night that he wished Sal was "normal".  As I was making dinner that night they decided they would like to eat in the living room (Daddy wouldn't be home) so they got their places all ready and I heard Jack say "Sal, I was sitting there." 
"Oh, sorry."  She replied.
When he came in the kitchen I told him - "a *normal* sister would have told you to go chase a cat, when you told them that was your place.  That your name wasn't on that place and you could just move on."
"Yeah,"  he said "I guess you're right."  
Oh, lessons sometimes just pop right out of the air.  :-)

Jack also has been on a campaign to change his middle name to: Razzle Dazzle.  I have no idea where he came up with that.  He is entertaining to say the least. 

He Was Ripped Off!

Jack just came barreling in from school with a tale of how he had "been ripped off......twice".  In his usual Drama filled way he told of how at lunch he had gotten a cookie and laid it on the table so he could dispose of his tray.  When he stood up his cookie was "magically gone".  But he "knew" that the "evil, lying Joseph" had taken it and he was right.  Joseph wouldn't give it back and "EVEN TOOK A BITE OUT OF IT" so he went to tell Ms M.   Thus ended the first ripped off.

Later in the day, Ms Bruno (the Asst Principal)  called him to the office.  Ms M had told her about the incident and Ms Bruno gave Jack a new cookie........  it was YELLOW and GREEN!!!!!  (Green Bay colors - a HATED team by Jack's team Chicago Bears)   This would be the 2nd ripping off.  :-)

As it took everything I had not to laugh - I did manage to get out "You didn't SAY that to Ms Bruno did you?"  
"no" and he gave me the *duh* look.    "And you did say thank you, correct?"  I asked.  
"Yeah, Mom - I'm not a jerk"  :-)  
Oh, he's a pip.  Entertaining - yes, but still a pip.  :-)