Autism & Christmas 2013 — Some Good Traditions & Some PainfulThoughts…

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December 28, 2013

All month long I was planning on writing a positive post
about autism & Christmas and the holidays and how the wife & I
have finally figured it all out.

But then some painful/emotional stuff hit me like a ton of
bricks on Christmas Day so I figured I should probably write about that too…

So this post is gonna be mostly good stuff and some painful
downer stuff at the end… So hang on for the ride…

Wifey and I did great with the holidays this year. We bought
the tree early, I got the outside decorations up early, we got tons of our
shopping done early, and we even got our holiday photo cards out a week before
Christmas where we usually get them out on 12/26 or later. 😉

We had a pretty good holiday season.

And after 10 years I feel like we’ve finally figured out
what parts of the holiday traditions we can do away with because of autism and
what holiday traditions must stay / are non-negotiable regardless of how hard
they are on Kyle. Here’s some examples.

1) Wifey grew up with a real tree and she wants a real tree
and she wants to decorate the tree.

So we drag Kyle to pick out a real tree every year and he
deals with it ok depending on the year or the weather, but he’s got to suck it
up…getting a real tree is a non negotiable.

And putting lights and decorations on that tree is a fav
activity for wifey so we will redirect (ie yell at Kyle J) 5000 times if
necessary to stop eating the tree.

But the idea of your kid helping decorate the tree? That’s a
tradition that we did away with since he never showed any interest.

2) Visiting Santa, getting a pic with Santa?
We gladly and without hesitation gave up that tradition a LONG time ago.
Kyle doesn’t get Santa & we never got a good pic…although this year we
got a decent shot with Kyle and Santa at a special needs holiday party went to.
The Santa was extremely patient… 🙂

3) Getting out a holiday card with a good pic of Kyle is a
non-negotiable. It’s happening.

But what we did tweak was we gave up trying to get a holiday
shot of Kyle in front of our tree or in an Xmas sweater.

For years we’d have an Xmas photo session with Kyle. We’d
plop him in front of the tree in a festive outfit and he obviously wouldn’t cooperate
or look in the camera or anything. We’d literally take hundreds of pics looking
for one good one.

And the whole process from the pic taking to the pouring
over the pics on the computer was exhausting. So for the past 2 years we look
through our pics throughout the year from our iPhones and pick out the best 4-5
that capture the essence of Kyle and pick out a collage style card and be done
with it. This year we got a pic of Kyle from each season of the year. 😉

4) Christmas Eve

Since we got married in ’97 Xmas Eve was always at our
house. Long story as to why but it just is. It’s tradition. 🙂

And wifey and I both come predominantly from Italian roots.
And with Italians Xmas Eve is the fish holiday. Don’t know why. It just is.
It’s a tradition.

Some Italians say the tradition is that you’re supposed to
make 7 different fishes.

Wifey never followed that 7 fish craziness but she did cook
fish.

Xmas Eve was always pretty mellow. Just her folks and my
folks coming over for dinner for lots of different fish dishes.

Now I don’t like fish. Neither did my dad. So there’d always
have to be a non fish dish for us heathens. 🙂

Anyway the Xmas Eve tradition of wifey cooking fish carried
on for years…even after Kyle was born and then after Kyle became the crazy
autism king y’all know and love.

Wifey was always slaving away making fish dishes in our
small kitchen. And most of the fish that she made was the kinda stuff that you
couldn’t make way in advance. (Lobster tails, shrimp, crab legs). So Xmas Eve
especially after king Kyle was always a high wire act of cooking and sweating
and stressing out.

Then about 4 years ago we invited one of our good friends
from high school to join for Xmas Eve dinner with her husband and her 2
autistic sons.

And that added another level of difficulty to the
proceedings. Not because any of the ASD kids were really any trouble, but
mainly because like many autism families who are in tuned with their kids…
they had maybe a 2-3 hour window maximum and then they had to leave before
their kids melted down.

And wifey would be slaving in the kitchen with crab legs
boiling and not really getting to spend any time with her best friend and
family who she only gets to see maybe 2-3 times per year.

So 2 years ago during the Xmas Eve proceedings she called me
into the kitchen. And with her hair all frizzy and mascara running due to being
in a hot steamy kitchen for hours she said to me “I’m never doing this
again. Next year we’re ordering take out. Your choice.”

And I said “Outback Steakhouse!”

So last year we threw the fish tradition out the window and
ordered from outback. And it was a lot more relaxed for us. Our folks seemed to
be ok with it to. Many of them ordered fish dishes anyway.

And this year we did it even better and got it catered from
an awesome local Italian deli (chicken francese, pasta with broccoli rabe,
etc). And we sent it all up buffet style in our kitchen with paper plates and
said “serve yourselves” and wifey and I got to spend a lot more
quality time with our friends before they had to bolt. So we broke the
fish tradition. And everyone seems to be ok with it although who knows what our
parents say behind our backs. LOL 🙂

5) Making Kyle open presents. That tradition died a
long time ago. We gave it up. He’s got no interest. So when someone hands us a
gift for him we’ll open it for him and try to make a big fuss, but we pretty
much leave Kyle out of it.

And Christmas morning there’s not a big gift opening at our
house. Since he doesn’t get Santa he gets lots of gifts along the way from us
and others but there’s not a big Xmas morning gift opening

So those are a few of the xmas traditions that we were ok
giving up we gave up vs the traditions we kept or tweaked.

And as I said in the beginning we had a pretty good
December. We got all our stuff done early or on time. Kyle was good for the
most part. Xmas Eve was a success.

So what’s the painful stuff? What hit me like a ton of
bricks? Well this is all my problem, not Kyle’s. But strap yourselves in
cuz here we go…

Christmas Day we are always at my sis-in-laws house with
most of my wife’s side of the family. She’s got a big family…lot’s of
brothers, sisters, nieces and nephews. A big
Italian American family.

And Kyle was pretty ok I guess. It’s a lot of people. It’s
in their furnished basement (Italian thingJ) and it’s pretty overwhelming but
Kyle tolerated it as best he could. Walking around eating pretzels and watching
Elmo videos. But around 9pm he was done. But the party was still raging. So I
brought him upstairs and slowly got him to sleep on the couch in their quiet,
dark living room.

And we do this maybe 6 times a year… have an occasion at
their house that goes late and I’ll get him to sleep upstairs. And here’s the
hard part.

I really kinda look forward to when he falls asleep so I can
go back downstairs and finally relax and have some fun without watching his
every move.

So Xmas day I get him to sleep and go back downstairs and
start playing a lot of fun games with my nieces and nephews. We played the dice
game “craps” for fake money, this other sorta dice game called
“LCR” for real money and then someone broke out this raunchy dirty
game called “Dirty Minds”.

And we had A LOT of laughs. And every 20 minutes or so the
wife and I would take turns checking on Kyle. And I’d find him passed out,
asleep on the couch. And I’d think “whew he’s still asleep. I can rejoin
the games”

But one time I checked on him it hit me.

I thought to myself these are his cousins. He’s 10 years old.
His cousins range in age from 15-25 but if Kyle was typical I have no doubt
that he’d be in the mix downstairs playing games with them. And the wife and I
have awesome senses of humor and would be pretty liberal parents so we’d have
no problems with our 10 year old son playing that raunchy game. It
probably would be HILARIOUS.

And that thought just hit me like a ton of bricks and made
me very sad.

Cuz that’s our routine at family gatherings. We bring Kyle
with us someplace. We hope that he has a decent time or at least tolerates
things. Our families are AWESOME with him and always make
special accommodations and allowances for Kyle and us.

But at some point at almost all evening family gatherings
there’s a decision to be made. Does one of us bring Kyle home to sleep and the
other stays? Or do we attempt to get him to sleep at the relative’s
house? Either way it’s usually after he’s asleep that a lot of the laughs
and fun begins. It’s not intentional. It just is.

And that hurts. Again cuz I know that the wife and I
would’ve made a typical kid that would’ve had a wicked, warped, raunchy sense
of humor. Now Kyle has a great sense of humor in his own way…but it’s not
the same…or at least it’s not what I was thinking about….

Anyway I’m completely rambling and this post is literally
ALL OVER THE PLACE, so I’m gonna end it here.

So there you go… lots of positives and one negative
thought that brought me down a bit… Sorry, but I can’t help where my brain
goes sometimes…

THE END…

OVER & OUT…

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Written by

Frank Campagna

I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).

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