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   :-)