Sally’s December 2006 Article

Go Sally!  Have I ever mentioned how much I just love Sally Nantais.  She is the bomb.  She has been the bomb in my life since I first starting researching fragile X online.  I know secretly she was my mom in a past life!!

Well, here is Sally’s article from last year in December.  It’s a good one (any article that starts with a song HAS to be good!).  She will post one for December 2007 in the next few days.  Since I didn’t start blogging her articles until recently, I totally feel obligated to post all articles past and present.   

BTW…don’t get confused!!  Sally has a fragile X son named Austin.  My Austin is non FX   Happy reading.

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We all have our own version of “normal”

by Sally Nantais, published December 3, 2006, The News-Herald

 

Tis the season to be jolly, fa-la-la-la-la-la-la-la-la!

 

In the merriment of the season, I’m frequently reminded of two words I love to hate “age appropriate”.

 

Those two words have followed me my whole life. When I was younger, my parents dictated what attire was “age appropriate”. I was a typical young girl trying to dress in “older” girl clothes. Now that I’m older my family still harasses me about dressing age appropriately but now it’s because I like to dress in “younger” clothes.

 

My father spent a large part of this past summer reminding others of advice given on the Red Green Show, a Canadian TV program, namely, that if you’re a man, over 40, you need to keep your shirt on.

 

As with most rules, I believe there should be exceptions, if you are over 40, and sporting six-pack abs, by all means, take your shirt off. If your torso looks more like a keg, maybe Red Green’s advice should apply.

 

However, I ask you, what is age appropriate?

 

My son, Austin, is 14 in chronological years, yet because of Fragile X and autism, he is developmentally much younger. 

 

For the first five years of his life, he wouldn’t even go in a room where Santa was. We eventually progressed to going into the area but not approaching Santa. 

 

After years of watching his sisters – and even his mother – sit on Santa’s lap, he finally reached the point where he would sit on Santa’s lap.

 

By this point, most boys his age were too old to still believe in Santa let alone sit on his lap.

 

Sitting on  Santa’s lap may not seem age appropriate for a 14-year-old – or a 49-year-old – but for Austin, and his mother, it is.  

 

Over the last five years, Austin ’s Christmas list seldom varies.  There is safety in routines and there is always a new Buzz or Woody doll on his list. Buzz and Woody often mimic the “Toy Story” movies. Before a year is out they will each be missing an arm, just like in the movies.

 

Austin always wants a Blues Clues notebook, which are now impossible to find. I regret that I didn’t hoard them a few years ago when they were sold everywhere.

 

He likes anything Barney even though most 14-year-olds could care less about a silly purple dinosaur. Others have tried to advise his mother that watching Barney movies isn’t age appropriate for him. 

 

I question how something that teaches a child about manners, courtesy, social interactions and accepting others for who they are isn’t appropriate – at any age.

 

As far as I’m concerned, age appropriate is only another way to define “normal”; and if there is one thing Austin has taught me, it’s that we all have our own “normal”.  

 

Our normal may be very different from your normal, but it doesn’t make either wrong, just different.

 

During this holiday season, live a little, love and laugh a lot. Celebrate in your normal way and remember what may be age appropriate for you might not be for others.

 

What a dull world it would be if we all shared the same “normal”.

Christmas Party

I have sooo much stuff to write about!  I tried to go through and pick out what I thought was interesting and it all is (I know I’m probably biased!).  So for fair warning just realize that you may be seeing 2-3 posts a day.  Then, inevitably, I will have nothing to write about!  

Today’s topic, or rather this moment’s topic, is my office Christmas party.  Every year the bank puts on a Christmas party for just the children, grandchildren, etc. of the employees.  This way they feel free to do an adults only party later in the month.   We had ours last night.

All of the kids wanted to go and get a gift from Santa.  Out of my children, Lauren got her present first.  But she didn’t get it.  Santa didn’t call last names .  So another little girl with her name went to get it.  Then she realized that this was not her present.  (Good girl!)  So Lauren got her present eventually. 

Matthew was next up.  He hates Santa.  He hates cameras.  Well, Santa wanted him on his lap.  The bank president’s secretary wanted a good picture of Matt. Bad combination!!!  We didn’t get to experience a meltdown but only barely.  Matt finally had enough, and before the meltdown, he just got up and left with his present.  I really hope I get to see some of the faces he made at that camera.  If I do get them from the secretary, I’ll post them on the Shutterfly website (only for designated folks to access…sorry but I gotta protect the fam).

Austin was next.  Once again Santa didn’t call last names but I knew this was his and sent it up.  Unfortunately, there was another little boy with the same name who wanted his present RIGHT NOW.  I was hoping that Santa would call him first.  Luckily, for the little guy he was the next present in line.  Phew!

Rachel was last, and I mean LAST!!  Nothing is worse than being last, except for having fragile x and being last.  She waited , but she was not thrilled about it.  None of my other children were either.  I wouldn’t let them open their presents until all 4 had theirs.  They all got movies, so if 1 or 2 opened theirs, then the rest would know what they got.  Plus, it just didn’t seem fair.  Matthew takes forever to rip open his presents so finally Lauren just grabbed his present and ripped it all off for him .  I think Matt was glad she did!

They were all very happy with their movies.  Lauren got Hairspray.  Austin got Live Free and Die Hard.  Matthew got Shrek 3, and Rachel got Santa Clause 3.  We will be watching those four movies for at least a week but probably more like four!   

The Latest on Tummy Trouble

I sent this as an email to my family.  I didn’t want to rewrite it all over again so I just copied and pasted.  (I’m not lazy…just trying to get ready for work )

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Hi everyone,

Everyone knows little pieces of what’s been going on with my tummy so I figured I better just send one massive email to everyone who is concerned and update you all

As all of you do know I have had problems with my left ovary for a while.  We did a surgery in March to correct it.  Well, it didn’t do squat.  At that time they ran some tests and couldn’t find anything wrong so the doc just let it go.  Well, it began all over again in September.  It knocked me out for a whole week about 3 weeks ago.

So I trudged back up to my doctor and she ordered an ultrasound.  She said my problem sounded just like an ovarian cyst. My doc left a message on my home phone Monday that the ultrasound showed absolutely no problems on that ovary!!  She said my right one does have a cyst but it’s not the one hurting me.

I called her back yesterday to see if we needed to look at another part of the body or what we needed to do.  She called me back at work and told me that she is pretty sure that something must be going on with that left ovary (at least she doesn’t think I”m nuts!!).  We have two options: pain management or surgery.  I told her that pain management was out of the question because this is knocking me out of my life and I have a full-time job and 4 kids to take care of. 

So I go in on January 4 to go over surgery options. On the phone she said that I could have surgery to remove the ovary or possibly just a full hysterectomy.  I’ll learn more in January .  Hopefully, after two years of this pain I’ll finally get rid of it soon!