Friday, May 21, 2010

The Talk, The Dinner Table, and Drama

There has been lots of drama around here lately.  So much that I am very far behind in posting and will try to catch up.  But where to start?

Drama is a good place to start.  Love triangles and lions.  Late nights and sell offs.  It has been quite a spring.  Alex was in the school play.  I signed up for this last fall, with no real clue of the involvement.  My kid is in kindergarten, how bad could it be?  Well, it was bad timing.  And bad hours.  And bad days at school.  But, overall it was very good.  Alex got very tired.  Very tired indeed, and was hard to handle at school and home for about 10 days.  The hours of practice for his non-speaking part were late and long.  6-8pm for an entire week.  This would be more acceptable if his bedtime was not 6:30.  I had a plan to only attend some of the practices, and then only stay for part of each, but I ended up having to work.  A lot.  Like the entire week.  So Kevin took over and he powered on through with full practices.  It was crazy, but perhaps ended up for the good.  Alex got chaos training and endurance for the performance days.  It was also the week of our garage sale, so there was lots of other work to be done.   So, between the practices and performances, amping up to clear out our house and make a small bit of cash, and working a ton, it is all a bit of a blur.  And my mom came up.  We love seeing Grandma, and she loved the play and helped with the sale, but it was a whirlwind indeed.  Alex was an elephant, had a multi-layered costume and full face paint, and three scenes on stage.  He put up with it all like a trooper.  The cast was huge at 90, but the other kids really looked out for him.  Sometimes I get the feeling he is like the school mascot, in a good way.  He had a 6pm performance on Saturday May 1st, also Sale day, and a 2pm performance Sunday May 2.  I know this for sure, the rest is a but fuzzy.  He had no bad behavior in specific during this time frame, like tantrums or blow ups (we have left those behind) but he was resistant and pokey at home and school, and more handsy and pincy with kids.  There were three kindergarten elephants and the mama in fifth grade.  The other two little ones, who Alex calls The Twins, were both girls from his class.  They were adorable together.    One of them, a cute redhead named Lydia, got her hand stepped on pretty bad during school by a disregulated Alex.  I asked her mom about how she felt during play practice and she said, "Oh, she forgave him right away.  She said that he didn't really mean it and just has a hard time controlling himself sometimes."  I asked Lydia about it too, and she said essentially the same thing, while smiling and gazing at Alex.  I heard through the grapevine she has declared her intention to marry him.

So, we survived the play weekend.  The garage sale had also concluded a 21 day Financial Fast where we quit all spending and shopping, except for groceries, bills, and gas.  That was a really cool experience, and tied in nicely with clearing out for the garage sale and focusing on selling off and donating unneeded things.  The house got much clearer and we are ready to head towards a summer of building in the attic.  As we got into May we began to revamp our dinner menu.  We started a plan back in March of a weekly dinner menu.  With school and all we had gotten into the bad habit of just feeding Alex pasta, toast, and bagels for dinner.  It was all he wanted.  Butter on all, and maybe cheese sauce or peanut butter for variety.  We have lamented his limited diet forever, he is a plain carbs kind of kid.  No meat, no beans, no veggies.  Not even tomato sauce.  If anything new is introduced he shuts down, either panicking, shutting down, or both.  We have been through the food clinic and made progress there, but made little further progress.  It started as a motor planning thing, and poor ability to distinguish textures and move food around.  Then it became habit and phobia.  I knew this, but was stuck.  I didn't seem to have it in me to do creative taste picnics like the therapist, and work step by step to make it exciting and fun to eat progressively more difficult foods.  That meant making a taste picnic time plan and having a specifically planned graduated menu, cooking it all, and fitting in these extra fun sessions into a regular time slot.  Yikes.  But finally all the carbs got to me.  It was too much and he was showing signs of readiness and branching out a tiny bit in his eating.  It was time to go for it.  So I devised and weekly dinner menu.  The same thing every week, at the same time.  Real dinner, with plates, napkins, utensils, and all family present.  We posted the menu and Alex immediately got in the habit of asking what was for dinner.  It was very basic with some fun things like jello and pudding thrown in for some desserts.  He totally got into making those.  And Kevin got into it to.  With a set menu to go off and shop for there was no more agonizing, or making separate meals for mom and dad.  I usually cook when I am home, but Kevin is a champion cooker too.  We have rarely ditched the menu and gone for pasta or toast.  Except for play week, all bets were off then.  But we are back on the regular schedule and it has worked.  Some of the biggies he now eats are soup, and tomato sauce on his pasta.  Still can't get him to eat a chicken nugget, but maybe that is for the best.  He is totally into mashed potatoes, and eats his cooked veggies.  We just did a 7 week revamp and dropped out some of the failures (the nuggets and hamburgers), kept favorites (soup, pizza, and ONE pasta meal a week), and the great success of the new menu was that my son at tofu.  Tofu.  And liked it a lot.  "Mama, I like this white cake.  It is yummy!".  And yes, marketing is important.  Tofu has become White Cake tofu, and quiche is Eggy Pie.  Total failure on the quiche as he grabbed it too fast and burnt his mouth on melted cheese, but hope to get over that.  This current menu will run for another 6 weeks before we revamp it again.   And this time I will start blending in and hiding small amount of healthy stuff in his mashed potatoes and other places.  As they say, youth and enthusiasm will always be overcome by age and treachery.

Perhaps the biggest event of the spring was our talk with Alex's class.  Big mentally.  We had his spring IEP, which was a dream.  Love his staff, all of them, and they are really on target in terms of assessing him and planning to help him move forward.  They are even instituting and new program for August to help him prepare for the next school year.  As we wound down this year I tentatively wondered if it would be good to talk to his class about his autism.  The enthusiasm was overwhelming.  It overwhelmed my urge to run, forget about the whole thing, and pretend he us just an average kid.  No luck there.  It is good, I suppose, that he has some very visible signs of autism.  He still flaps when excited, gets overstimulated by too much noise and excitement and runs out the door or grabs kids inappropriately, and it is easier for him to avoid social contact.  But he loves his little friends too, and reaches out all the time in many different ways.  And the kids notice all of this, and that he gets to leave class with his aide, and he does not always have the same rules as they do.  Since they really seem to love him too it was time to come clean with them. 

We debated about using the word autism.  Are they too young to understand?  Will they use the label as a weapon?  Will it make them turn on him, or act differently than they would without the label??  But you can't erase the truth and understanding combats fear.  The truth is there are quite a few notable differences with Alex, and these kids will encounter many other kids with autism in there lives.  Maybe by knowing all about Alex, while they love him as they do, then that will help the others.  The talk was short, about 10 minutes.  Alex was out of the room, as well as the other little boy in their class with autism.  Teacher had them gather around us on the carpet, 20 some little eager faces.  We talked about how Alex is different, both the bad and the good, we talked about autism and how he was born with it, we talked about their observations.  Lydia sat right next to me, and when I said nervously that Alex had a thing called autism she raised her hand with a big smile and said her mom had told her that.  I didn't even know her mom knew, but of course she did.  The signs are all there for someone to see.  I was surprised and delighted, score one for the truth.  Why delighted?  Because Lydia was smiling, and Lydia wants to marry Alex too.  I really got that these kids, these kids who have been with him all year, really want to be his friends.  They are not just tolerating him, they are pursuing him.  And even though he is not able to fully connect with or play with them on the same complicated level they are at, they don't care.  They see him as a peer and friend, and tolerate the negative while celebrating the positive.  They know about his good memory, and his sense of humor, his ability to memorize schedules and sequences, and know the rules.  They like his smile and celebrate his opening up and joining their clan of kiddom bit by bit.  Yes, the talk went well and we will do it again next year, but even earlier.  Like October.  And of course we ended with treats.  Always bring good treats.  Alex joined us and it was not weird.  He was thrown by his parents being in class, but the other kids loved us and begged us to sit at all their tables.  It was lovely.

There are only two weeks left of school.  Alex's new 1st grade teacher joined out talk for a bit.  He gets to keep his aide.  She started out sharing two kids then moved to only Alex.  She is staying on for another year to work one day a week with him.  His other aide has worked with the other kiddo in class and will be with Alex instead next year, Monday through Thursday.  She is great too.  We have a full summer planned.  My greatest dream is that Alex continues to connect with his peers, grow and learn to live in  the regular world.  He will always have his Planet Jellybean to retreat to, hopefully he will need it less and less. 

I didn't really mean for this to be a mega post, but sometimes these things just happen.  There has been more this spring but it will have to wait.  I hit on all the biggies.  Oh, except for the love triangles.  Alex has two girls that have openly declared their love for him and intention to marry him.  Lily actually had him in a headlock the last time she trumpeted her plan to Kevin.  And Alex has proposed to two women so far, Melani who is a beautiful young lady in her 20's that I work with, and myself.  Yes, he proposed to her first.  That was last year.  Just recently he declared that he will marry Lussi, a third girl from his class.  She was in the play too, and dressed as an exotic bird.  She is a peanut, but very much a strong little pixie.  But alas, she has declared her love for Aiden.  And so the world turns...

1 comment:

Kathy said...

Great post! I love to read these and get a glimpse into your life. Sounds like Alex is doing really well - you and Kevin are amazing and Alex is a luck boy :o)
Love you