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.  :-)

The Future

"From your child with special needs: "I do not spend my time living in the future as you do. I know you worry so much about tomorrow and what will become of me. I can only handle one day, one week at a time. If I could only reach you when you worry and pull you back to the moment here with me, I would tell you that I love you and to please take it one day at a time." HOPELights


Ain't it the truth.  I DO think a LOT about what's going to happen to Sal in the future.  Where she will live, work, what will happen when I die.  I pray every night that I live just one day longer than she. 

Sal, of course, is undaunted by the future.  She is planning on buying the house next to us and having two boys: Matt and Max.  She'll "get the father later".  :-)   It's humorous but yet sad too.  I don't think she'll be able to care for herself much less care for a child.  Of course I don't say this to her or discuss anything that serious with her.

Jack and I are starting an Autism Acceptance Book.  Jack is being MUCH more obnoxious to Sal and though I realize that this is very typical brother behaviour - I do want to make sure he has the facts about what goes on with Sal.

So on to Snowshoeing.  Yes, Sal has signed up for Snowshoeing with the Park District.  Her first practice was last night.  She had a good time AND she can do it!  I figured it'd be a good match for her.  She doesn't seem to be bothered by the cold AND she can walk - so I thought what the heck.  :-)   And in true Sal fashion she has embraced it.  ;-) 

Jack took a beach ball along and played out on the soccer field the whole hour.  As I watched him I had to think about how I get upset sometimes because he can't sit still but if he did - he probably wouldn't be a child that liked to go out in the freezing cold and play.  I didn't and I was a child that could sit still - still can.  :-)  So I had to be thankful that Jack was Jack. 

I think God or whatever makes things like that on purpose because Jack was on my list BIG time this week.  He threw a huge hissy about not having a 2010 calendar of his own and talked to me like I was his hired help.  When I walked away and refused to answer his pleading for help he changed his tune and said he was sorry but we still had a discussion about how *we* act in this family and what was and was not acceptable.  He needs reminding constantly.  ;-)  He's SO dramatic.  Everything is SUCH a big deal - that is unless it doesn't concern him - then it is nothing.  Kind a Republican point of view.  jk   :-)  

Looser Mom

Boy have I been stinking up the joint lately.  First of all, I totally blew off Sal's bowling on Thurs afternoon.  At 5:00 (It starts at 4:30) it dawned on me that she had to be at bowling.  She was NONE too happy with me. 

Saturday I forgot her basketball practice.  She had social club later in the day and we got her to that.  When I picked her up she gets in and promptly says "you forgot to take me to baaaasketball".  CRAP. 

I really don't understand why.  I mean, I used to work and never missed anything.  Now, I'm at home - alone and I'm having problems.  I have always said that being a stay at home Mom was the hardest job and that's why I *went* to work - but I meant with kids at home.  I have no kids from 9-2:30.  Pretty much the same amount of time I had them before so nothing big has changed except I have time at home to do things.  Now, granted, I HAVE underestimated exactly how much time that is.  When I first lost my job/quit - whatever - I thought "OMG - I'll have all this time to really clean things and do things like paint and write....."   NOT.  9-2:30 *seems* like a very long time - it's not. 

I mean - it's ok to clean a room - not a kids' room but a bathroom or room where you don't need a dump truck backed up to the house.  And it's time to do laundry and get some dishes done - but it's not time to drag things out and have to put them back again because you have to get dinner going.  I have to work on a better schedule of what I'm doing each day.  I think I've let my guard down and haven't been as anxious about making sure I'm where I'm supposed to be - which has helped my health - just not my Mother skills.
:-)
Speaking of health.  I saw my Dr this week.  He talked me into a flu shot (no, he didn't have too talk much) and we talked about my spiritual health.  He had no religious affiliation on my records - I'm new to him - I saw his partner for the last 20+ years - but he's since moved....anywho...   We talked about my hesitance of naming myself Christian - being as how I'm not all that encompasses AND being that I HATE what Christianity has begun to stand for lately.  I know that's not true of all Christians - but then I ask - where is *their* outcry?  Where is their spokesman that says "We do NOT believe in this"???  Again, I digress. 

My Dr is awesome - we talked about how hypocritical some are and that going to a church does not make a person embrace everything about that religion.  That it is possible to keep one's own identity and beliefs within the church.  We even discussed my friend Peter (the apostle - my favorite) and how he felt this way about Paul (never cared much for Paul).  So, I'm feeling better about this.  I find my Dr very interesting - given he is a vegan, climbs mountains and is SO animated you would swear he was on stage.  He believes in Eastern medicine of mind but also endorses the flu shot and drugs of Western medicine.  I just felt better after seeing him.

Now all I need to do is get it together.  :-)

Swimming

Swim team practice tonight for Sal.  She LOVES to swim.  She smiles the entire time she's swimming.  Tonight Tommy's Mom and Kyle's Mom sat by me and we engaged in conversation.  Tommy is 11 and Kyle is 15.  Amazing how different our kids are.  Tommy wrote Sal's name today.  Sally can't write at all.  Sally talks ALL day long and Tommy won't utter a word.  Kyle can swim so well that you would not notice a difference at all but yet can't tie his shoes and has trouble with buttons. 

One thing that we as mothers all had in common - problems with people in our lives who think the kids' can be cured, or that they plain don't have a problem, or that we aren't doing a good enough job.  Lord, the advice people give you can really be tiring.  Or the people who shove the sunshine up your butt.  We all had an instance where someone was going to *show us* and turns out they got the lesson.  :-) 

We all have people in our lives who are ashamed of us and of our children.  It's kind of interesting because after meeting SO many Special Needs parents I've determined that we are some of the funniest and most insightful people I've ever met.  It's like the kids bring out the very best in us and seems we've all developed a very wicked sense of humor just to get through it all. 

As usual there was a "typie" (typical - as in parent to a typical child) parent there at swimming who thought our kids didn't need two lanes in the pool.  People like that really push my buttons.  I also love the stares that we get every week by someone in the locker room as I help Sal get dressed.  Both mother's knew what I was talking about.  It's nice to kind of have a bitch session once in a while.  I also got some great info about BHS from Kyle's mom .  And Tommy's Mom was so pleased that Tommy had written Sally's name today.  Made me feel good too.  Sally was pleased to hear that Tommy had thought of Sal at school today.

Swim meet coming up.  Sal got timed tonight.  Backstroke still needs work.  She's SO slow - but she's smiling ALL the way, it's so cute.  The kids all cheer for each other.  Sometimes I feel I'm doing a disservice to her by trying to get her to fit into our world - we should all try to fit into theirs - it seems SO much more pleasant.  :-)

What's that saying: "Sometimes your the hotdog maker and sometimes your the hotdog."  Or maybe it was ants or something.  I can't remember.  Lately I'm the hotdog - just constantly being picked at.  As Sal gets older she's actually more demanding AND we're hitting that *lovely* time of teenage-ness.  The talking back, the snide remarks.  Granted with Sal they're accompanied with "I'm sorry" but still.  Her verbal battle is exhausting. 

What's really crazy is that this "phase" of her's is really something to celebrate.  She is starting to think more for herself and to rebel.  But it's very hard to celebrate this when you're still dressing her and brushing her teeth for her.  Like I said, I'm feeling like the hotdog lately.  ;-)

Jack(and others) was honored at school with an A/B honor roll assembly.  I'm really proud of him because he does all his work on his own.:  The school year started and everyone (my friends) was complaining about homework  and how much there was of it and it occurred to me that my child was not bringing ANYTHING home.  I then emailed his teacher and asked her about this.  Come to find out, Jack's teacher allows times during the school day that the kids have free time - Jack (and others) do their work during this time!!!!!  I was STUNNED!!!  See, I'm the WORST procrastinator and Bill's not much better so for Jack to do this for himself is fantastic!  We had a talk with him and told him that he was more than welcome to make the decisions on when to do things on his own as long as his grades were good.  If they weren't then I'd have to empty his backpack each day and be on his butt.  So far, so good!  Since I'm so NOT a self-starter I am really impressed with him.  I so hope I don't rub off on him and rather maybe I can learn from him. :-)

Jack has lost patience more with Sal lately, too.  He yells at her all the time - which puts me over the edge.  I know he's frustrated but he still needs to learn to deal with her in a "human" way. 

I'll be listening to the Illini West (Carthage IL) game today.  They're playing in the Quarter Finals today.  Brad is talking the trash already this morning.  Him and Mick were both on my facebook making remarks.  Brad is looking forward to his school getting to State and Mick is looking for his kid's school to go too.  Thank God they're in different classes.  :-)  It's crazy to be playing High School football this late in the season, but it's fun too.  :-) 

Mrs Grimm's A/B Honor Roll Students

A Lesson Learned

HOPELights From your child with special needs: "I want the same things you want. I wish I moved faster, wish I could catch up. Wish I could tell you what frustrates me. As lonely as it gets for you, it is for me too. But most of all I wish I could tell you how much I love you. I hope you feel this when you are near." HOPELights♥

 

Strange how some things come all at once.  Yesterday, when taking Sal to bowling, Tommy's mom stopped me.  (Sally calls this boy Thomas)  She told me how much Tommy liked Sal because Sally always talked to him.  Tommy is 11 and is non-verbal.  It made me realize that the thing I've been on edge about lately (her CONSTANT talking) is what is making this boy's life better.  Because Tommy is non-verbal most kids give up - thinking he's stupid or mad at them - you know, who wants to be the one to do all the talking.  Enter SALLY!  :-)  

On the ride home I kept thinking about this and it dawned on me that I didn't even ask Tommy's Mom what HER name was.  It's strange how we, as Special Needs parents kind of keep to our self.  As I thought back I realize that at swimming we all have our own little corners we retreat to.  We don't tend to form bonding friendships like other parents who attend sports with their children.  I wonder why that is. 

Anyway, when I got home the above blurb was waiting for me in my inbox.  I think we're all lonely - we, as parents have SO much going on that friendship is really a hard thing to take on sometimes.  Any relationship needs to be tended and I think we get so consumed with tending to our Special Needs kids that when we are alone - we welcome it - we relish in it - we don't want to take on anyone else's "stuff". 

This is why I'm so VERY thankful for JBSRA.  They take Sal and engage her and give me a break.  They cherish her as I do and thus *I* get a break, knowing that not only is she learning but also having a great time and being cared for by someone who has patience with her. 

This week has made me appreciate the thing that bugs the heck out of me about Sal.  I remember distinctly how MUCH I worried that she would never talk.  I imagined a very hard life for her when she couldn't get her needs met because she wouldn't be able to communicate.  Now I worry about other things.  Mostly, I pray that I will live just one day longer than she does.  :-)

 

Football

Sally and I went "South" last weekend.  My Aunt Betty and Uncle Alex were coming in from FL and the kids had Friday off --- plus Bill was having a Garage Sale here so Sal and I decided on Thurs night that we would leave Friday and go for a visit. 

We happened to hit the weekend that QND (Quincy Notre Dame) played Illini West (Carthage and surrounding area).   They are both ranked #1 in their divisions and they haven't ever played each other.  "Uncle" Brad is the Principal of Illini West High School and "Uncle" Mick is big in QND and his kids will be going there. 

Some of you may not know the whole hatred of QND.  If you're a Bear's Fan think of QND as the Packers.  You know, you always root for the Bears and ANYONE who plays the Packers.  QND is HATED "down south".  They have been ever since my Dad was an athlete and they were called Christian Brothers.  They usually have good teams (and they've been accused of paying for those teams) AND they really could benefit from being jacked up and having a little humility run under them.  :-)   

This game was so hyped up ALL week.  There were news crews there with all the satellites and vans and such.  They played at Illini West.  My Nephew - "Uncle" Brad was very concerned that if QND (which everyone was betting on) would do their customary *Victory Dance* on IW's field and that there could really be problems.  I'm not kidding when I say this game was one of the biggest things to happen down there this year. 

Aunt Jill , Sally and I picked up Uncle Mike and truckstered over to Carthage about an hour and half before game time.  There was to be a JV game prior and we knew it would be hell to find a seat.  Mr Gooding ("Uncle" Brad) had saved a nice parking place for his Mom and Dad so we didn't have to walk too far at all.  We did have to split up, though.  There were no seats where Uncle Mike's chair would fit with 4 around him.  So Sal and I sat in the Cheering Section.  :-) 

According to the count there was close to 5,000 people there that night.  FANTASTIC game.  And yes, Illini West won.  I love Mick dearly and especially his kids - but I don't think I can *ever* cheer for QND.  Sal and I had a ball.  We yelled and cheered and clapped and at one point the cheerleaders threw out suckers and one of the kids caught one and gave it to Sal saying "I have to give this to you because you're wearing a Cubs shirt".  :-)  So not ALL "down home" boys are stupid and like Cardinals.  :-) 

We had plenty of time to get food and Sal bought an Illini West shirt with Charger on it.  At half time we watched the band - which was conducted by the Band Teacher that directed Brad and Mick at Southeastern and now works for Brad.  (ain't life amazing)   They were GOOD.  But Ms Linda has ALWAYS gotten great music out of kids.  We had a baton twirler in front of us and I explained that Aunt Jill used to twirl too but that her baton was on fire...... at that exact moment the twirler hit the ground and lit 2 batons and started twirling!  Sal and I were pleased.  :-)   What a fun night. 

When the game was over and QND was licking their wounds and Brad's kids were dreaming of the blizzards that their Uncle Mick had bet them - we got to talk to Mr Gooding and I do believe he could have floated away.  He was SO happy that they had won.  We all were - except Mick.  :-)  Mick takes a lot of razzing but he's a good egg, and a good sport. 

LOTS of county cops helped direct traffic out of the school and then as we were taking Uncle Mike back to the Nursing Home we saw lots of county cops taking radar - going to get those QND people on their way back to Quincy.  I'm not kidding when I used the word HATE.  :-) 

If only that had been my only encounter with Cops that weekend.  Yes, I got a ticket.  On my way from my Mom's to my Sister's.  There's a nice flat stretch of highway where you can see forever and I'll have you know I'm not the only one who has been stopped there.  I am the only one in the family though.  :-/
And on top of that he didn't even ask where I was going or where I was coming from - because I was all ready to pull the Gooding / Beckett last name card.  :-)  When you're related to people who are well known and liked - you use it.  :-) 

Now, as most of you know - Sal LOVES COPS.  As in the TV show.  Now, on COPS the show - EVERYONE goes to jail - no one gets a ticket....soooooooo..... as he's walking back to his car after stopping me and getting my license and insurance info, I turn around and she's all huddled up with her monkey in her hands and stammering "Are you going to jail???"  

Oh My!   Thank God it took him a while to write me up - I was busy explaining a "ticket".  All Sal knows is a ticket is a good thing - gets you on a ride or lets you get a prize.  Ughhhh.   So we got it all straightened out and on our way to Aunt Jill's.  Since Aunt Jill wasn't home - I wrote out my check and headed to Bowen to mail it.  Sally was quite concerned that he took my license so I figured I'd show her exactly how this all works.  What adventures we have.  :-)

Saturday night we had a huge wiener roast at my cousins' house.  Her and her husband bought the farm that my Grandma used to live on.  It was strange Grandma used to live on.  It was strange seeing it again.  Why is everything always so SMALL when you become an adult?  As a kid her house was HUGE.  Anyway, we had a great time.  My Cousin's husband is a big hunter and we got to see all his hunting dogs.  He has some really pretty blue tick hounds and of course some rat terriers.  Mabel would have been in heaven.  The blue ticks have much deeper howl than Mabe's.  I might need to take her for lessons.  :-)

Seeing my Aunt Betty with my Mom and Aunt Joan is funny.  It's so like me and my family.  Betty is a lot younger than the other sisters too.  There was a lot of us and I tried to explain how everyone went together to Sal... not sure she got it all - but she had a good time nonetheless.  :-)

Mabel didn't get to go south with us.  She ran away on Thursday afternoon and spent the weekend in doggie jail at Animal Control. Tiny and Chunk both cried when they found out she wasn't coming.  :-)

When we returned to Bolingbrook we found that the house was a wreck and the Daddy of Sal's Little People was missing!  Oh, there was hell to pay!  :-)   The good thing was that Bill had made enough on the garage sale to cover my ticket.  ;-)

Helping With Reading

Since my recent "unfortunate unemployment", I emailed the teachers I know and told them that I was available and wouldn't mind helping in any way I could.  I think I hardly hit the send button before hearing back.  :-)  I'm now helping with Guided Reading in JES 5th grade.  It is a GREAT time.  I have a good group of kids and I love the books that were picked out.  There's something about just being at school that puts me in a good mood.  Probably because I'm not in charge of teaching them, or guiding them.  :-)  I have the life of a Grandmother when I think about it.  I get them for an hour - I can wind them up and then send them back.
:-)  Anyway.....

As I was talking to Jack about being there - I'm in a hallway that Jack doesn't go down often - he asked if I could eat lunch with him after I was done helping.  "I'll buy your lunch if you want to eat with me, Mom."

Is that not cute?  He'll buy my lunch with the card that he gets from school with my money.  :-)  Oh, he's so like his father.  :-)

Magic Class Truly Magical

Jack had a Magic class at the Park District last night, and as I was sitting in the waiting area I noticed there were JBSRA members floating around .  A Special Needs team then walked in and asked where the gym was, so I decided to go find out what they were playing and watch for a while.  As I approached the gym I saw Aaron, Mark, Kelly and a lot of the other people we know from Adult Basketball.  They were playing volleyball so I took a seat and watched. 

As usual, I teared up.  I just love to watch them.  The vast majority of special needs people are by far the most inspirational, happy, and positive people on the planet.  They make you acutely aware of what's REALLY important in the world.  They take the world truly as it is.  I always feel very honored to share the world with them. 

When I picked up Jack from his Magic class I asked if he'd want to go watch.  Well, of course.  :-)  I really like that about Jack.  He seems so at ease to celebrate with others and to high five adults he only knows through Sal's things. 

The funniest thing was that night when we got home and showed Bill and Sally all of Jack's magic.  After the whole "show" was done Jack had things for me to sign school the next day and when I asked Sally what number the day was and she answered, Jack popped off with "Sally, how do you always know what day it is?"
"I'm magic, Jack" she replied with the most sober face.

Boy, ain't THAT an understatement!  ;-)