Wednesday, November 30, 2011

It's the Most Wonderful Time of the Year

What a week!  It was Thanksgiving and I had the stomach flu for not 24 hours, not 48 hours, not 72 hours, but for SIX days.  Here's what happens when mama has the stomach flu-- life goes on!  There were some up sides: 1) No one else caught it (although I thought for a day Tommy had it, but I don't think he did) and 2) I didn't seem to gain any Thanksgiving weight.  Not all together bad.  That being said.  I wasn't quite myself last week or even this week.  I went to cash a check at the bank and put in my debit card along with my Sam's club card instead of my driver's license.  Either the teller didn't notice or she was kind enough not to question me and accepted my Sams's card as an appropriate form of ID.

Then, on Monday, I got Tommy up and ready for school and got there and could not figure out why the parking lot was so empty.  Well, you see, there was no school on Monday and if I had read that in the five different places it was listed I might have known that.  

Finally, after Joey's hearing test on Tuesday, I tried to pull out the pre-paid parking pass I buy every month (just as a tip- if your child has a lot of therapies, sometimes the hospital parking garage will have a pass you can buy so you aren't writing checks for $1.75 or scrounging for change all the time like I always was), and instead of giving the parking attendant (who is totally on my Christmas list.  I see him about 5 times a week and he sits in that super cold and tiny checkout box-- that guys needs some homemade cookies for sure!) my parking ticket and pre-paid pass, I handed him my parking ticket and my insurance card.  Am I losing my mind-- perhaps a little.  Six days without solid foods apparently plays games with brain capacity.

Speaking of hearing tests and ear tubes and such.  Joey's tubes have seemingly been working miracles.  He is now napping for 2 hours every afternoon (much better than his previous 30-60 minute snoozes), he is babbling all the time and.......drum roll...... he is really, really, really trying to move.  It's not a crawl and it's not even an army crawl, but it is sheer determination and drive and he wants it BAD!  It is incredible to watch!  I don't know if I have every witnessed another human working so hard.  He literally huffs and puffs after he tries to get to the remote or IPhone or any other electronic I entice him with.  Actually, this reminds me-- I need to get a video of this-- it's incredible.  (Pause while I whip out my hot pink post it note and blue sharpie to add another note to myself).

While we have seen the above improvements post-ear tubes, we did not have a successful follow up hearing test.  There was improvement over the last time Joey had the test (which involves me holding him on my lap in a soundproof bunker like thing while they play really annoying sounds and see if he responds), but he still isn't up to "normal" hearing and he is still testing as having some hearing loss.  The next step would be the auditory brain stem, but that would require that he go under general anesthesia again and we are hoping to avoid that if at all possible.  Just more follow ups and tests for now.  

Anyways-- it really is the most wonderful time of the year.  I've been staying up the last few nights to try and create some "Magic" for my boys and as we run around and go out and about there are signs of magic everywhere.

One of my favorites is Magic in the form of a kind woman named Betty who works at Michael's Crafts out in Montrose.  Every time I am on one of my craft kicks I grab my Michael's coupons and head over.  Every time I see that Betty is working I get in her lane.  Betty has an unfair advantage to begin with.  My maternal grandmother's name was Betty and she was my idol.  When you went to grandma's house she had every single item every single one of us like.  Mini sugar coated cereal boxes for us kids (we weren't allowed it at home, so it was a treat at Grandma's), Bizmark donuts for all,  deli platters, fruit platters-- she always had a huge spread and was the most thoughtful woman in the world.  Not to mention she was incredibly fun to travel with and do just about any kind of adventure from watching Nebraska play in the Orange Bowl to going to see E.T. at the movie theater-- my Betty was always up to whatever we all wanted to do.

That being said, when I go into Michael's and get in Betty's line I'm already smittin' with her.  She always asks me what I'm working on and it's usually something with the boys.  She always tells me the same thing, "They sure are lucky to have a great mom like you."  I always reply, "I'm awfully lucky to have such great boys."  Then she repeats what she said and I blush.  Does Betty say this to every person who goes through her line?  Possibly.  But it doesn't matter.  Every time she says it, she makes me want to be a better mom.  Every time she says it I walk out of there feeling like a million bucks instead of questioning why I just bought edible glitter for $6.99 to put on cookies.  I love Betty-- she is why this is the most wonderful time of the year.

The Polar Express is another form of magic we love.

Thomas Henry is not a big fan of Santa-- he never has been.  This year, they have slowly been building a new found friendship.  Here he is on the Polar Express questioning whether or not to talk to Santa this year and then finally, they share a high five and Santa gives Tommy a silver bell to put in his pajama's pocket.  I think we are making progress.

We don't totally have all the decorations up, but we are getting there.  This year we have added a new addition to our Christmas traditions-- the Elf on the Shelf.  Our Elf has been named "Cookie".  It was close between "Five" and "Cookie" and "Cookie" finally won out.  I have mixed feelings on our new friend, Cookie the Elf.  So far he hasn't inspired very much good behavior, but he has helped provide some new magic to this year's holiday season.

Our Movie-themed Tree

My mom makes these!

Happy December!!!  Coming soon will be a list of places to shop for holiday gifts that support individuals with Down syndrome or other disabilities.  

Sunday, November 27, 2011

Not Again - George Clooney and the R-Word

We saw the movie The Descendants last week and here we go again.  Another Hollywood movie and movie star using the R word as a punch line.  And the thing is-- the scene with the R word in it was so unnecessary.  It did not add a single thing to the plot, to the characters, to the movie.  I wish that the Down syndrome community had a single voice that would come down like a ton of bricks like GLAAD does when someone uses a derogatory slur for gay.  Most recently Brett Ratner was removed as a producer of the 2012 Academy Awards for using the F word (fag) while promoting his movie Tower Heist.  Where is that kind of reaction from the Down syndrome community when a movie uses the R word (retarded) as a punch line?  Where is our unity and our organization?

I really wanted to see The Descendants.  I really enjoy George Clooney.  It's actually a touching and powerful movie.  I was shocked when in the middle of it, George Clooney's character, Matt King says to Nick Krause's character, Sid something to the effect of (I'm paraphrasing because I can't remember word for word) "You are so retarded."

I looked at my husband.  He looked at me.  He knows how I feel about this.  Would I be able to make it through this movie?

That's when the character Sid replies, "That's not nice.  I have a retarded brother."

Matt looks shocked.  

I was shocked.  My husband and I looked at each other again.  Could this be a teaching point? A lesson in the middle of this movie?  No such luck.

Sid goes on to say, "I'm just kidding.  I don't have a retarded brother.  Sometimes when old people and retarded people are slow I just want to make them hurry up......"

Really?  Seriously?  This is entertainment?  What was the point of this scene?  Did George Clooney really feel like this encounter added to the depth of his character?

It just pisses me off.  Using people who have intellectual disabilities as a punch line.  Disability slurs as a means of entertainment?  I don't get it.  I really don't.  I will never get it.

Where is our version of GLAAD?  Who speaks up for those who can't speak up for themselves?

In the past 12 months I have seen movies where someone used the R-word as a derogatory slur starring Julia Roberts and Tom Hanks (Larry Crowne), Justin Timberlake and Mila Kunis (Friends With Benefits) and Justin Bateman and Ryan Reynolds (The Change Up).  Now I add George Clooney to that list and it sucks.  I like a lot of the work these actors and actresses have done, but no longer do I respect any of them.


Here are the actual lines from the book "The Descendants":

"Stop it," I yell.  "Stop touching each other."
"Whoa," Sid says.  "Maybe that's why your wife cheated on you if you're so against touching."
I snap my head around to face him.  "Do you get hit a lot?"
He shrugs, "I've had my share."
I face my daughter, "You know you're dating a complete retard.  You know that, don't you?"
"My brother's retarded, man." Sid says.  "Don't use it in a derogatory way."

"Oh."  I don't say anything more hoping he'll interpret my silence as an apology.
"Psych," he says and now kicks the back of my seat.  "I don't have a retarded brother!"  His little trick is giving him a great amount of amusement.  "Speaking of the retarded," he says, "do you ever feel bad for wishing a retarded person or an old person or a disabled person would hurry up? Sometimes I wait for them to cross the street and I'm like, 'Come on already!' but then I feel bad. 

Saturday, November 26, 2011

Ethan Allen - Holiday Table Inspiration Contest

Marty Draime is the incredible interior decorator and cake designer who made Joey's incredible birthday cake.  Remember this....

Through making his birthday cake, Marty learned that we were celebrating not only his first birthday, but his first year.  An incredible year of making it through his helmet, lots of new diagnoses and heart surgery in June.  She called me a few weeks ago to tell me that she wanted to do her holiday table design in honor of Joey and for the organization we were raising money for through the Buddy Walk-- The Up Side of Downs.  We were so honored and so excited that Marty would think of Joey and think of raising awareness for Down syndrome.  

Through December 17th, you can visit the Montrose Ethan Allen and vote for her table.  You can also give donations to the organization of your choice.  Ethan Allen will match the winning table's donations that are collected and give them to that organization.

If you are out and about in Montrose, please consider going in and voting for Marty's table and visiting all the other amazing tables.

Joey, Tommy, Lauren and I all visited last week and voted.  We met their wonderful manager and owner and many of the other designers.  The store literally took our breath away-- it is beautiful, inspired and gorgeous!  

'Tis the season!!!!

 Tommy got to meet the owner and his dog, Annie.  What a fun visit!