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

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
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…

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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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34 People Replies to “Autism & Christmas 2013 — Some Good Traditions & Some PainfulThoughts…”

  1. Hi Autism Daddy, I enjoy your blog a lot. Your story-telling ability, sense of humor, and candidness make your posts so interesting to read. My son is also 10 and considered by most as low-functioning. He is non-verbal and has lots of stims. Last year I contemplated not putting up the Christmas tree because the year before we would almost daily hear the crash of over 100 Christmas ornaments as my son took down the whole Christmas tree daily. Thankfully it never came to that again and we put up the tree with no problems except the occasional broken or missplaced ornament. We have also been able to go to parties now and relax more with our son being more "present." I owe the changes I see in him due to developing communication over the past year by spelling on a letterboard learned through a technique called Rapid Prompting Method or RPM. Our son is still autistic and non-speaking but he has a lot to say and it has changed his and our lives. I'd encourage you to have a look at my blog to begin to investigate it. The link is There seems to be a new wave of non-verbal autistics finding their voices (Ido Kedar, Naoki Higashida, and many other unknown names). Kyle's age is about the age a lot of these kids are starting. I'd love to see your blog add hope into the mix of your story. You would certainly reach a lot of people.

  2. Anonymous

    Am still getting used to Christmas with our 4 year old autistic daughter, she does not get Santa/Presents either – was a tiny bit better this year as I knew what to expect, and for her too I hope – Jo, UK

  3. Anonymous

    Thank you. Couldn't agree with you more.

  4. I have Asperger's but I can open presents and have since I was a little kid. After toddler, at least, I was in a place where we could have a real tree. I have helped decorate the tree for years now, I think. Not sure when I first started. Maybe I'm an atypical Aspie or girl presentation. I don't know what my functioning level would be. I have social difficulties (I'm social but rather odd) and some sensory issues. I've been fussy about food since after preschool, but less in the past 6 years. I had some stims at home in elementary school years and hyperactivity as a little girl (less hyper in my teens, though). I'm 24 now, btw..

  5. Anonymous

    I totally understand your post, but you should not feel guilty that Kyle isn't enjoying himself with his cousins like he would be doing if he was typical. Be thankful that he does sleep so you can have some fun time playing games. My son is almost 15 with autism and Christmas is a lot of work, Company comes over, no one really acknowledges him and they eat, drink and a few hours later they leave. I look around at other families and am very jealous that they get to have fun and laugh and enjoy themselves. Life is hard enough with autism and holidays are sometimes just too much work. Thanks for listening and hang in there.

  6. Anonymous

    It's funny how things change, too. This year, it was the boy (12, moderate/severe autism) who insisted on the tree, and who pestered us for WEEKS about the presents. For the first time in his life, he wanted to open presents. Of course, he didn't really care what was in them, but we enjoyed the present-opening while it lasted.

  7. Anonymous

    I feel bad looking under my X-mas tree and there are my son's presents still not opened.I thought my son was the only one who had no interest in presents or Santa. Thank you for sharing it makes me feel not so alone.

  8. We also get a real tree every year. We head out east(we live on long island) to a tree farm and cut one down ourselves. For Christmas 2009 we took all four kids and headed to the farm. Our youngest was only 2 weeks old. The oldest is Ryan, he has severe Autism. He was 14 at the time. We get everyone out of the car and start walking. Immediately Ryan starts to cry. It was very cold, windy at the farm. I decide that I will go back to the car with Ryan and the baby and hubby will continue on with Kevin and Maddie. I get in the back seat of the minivan with Ryan and baby Jack. Now both of them are crying. I start nursing Jack and come to the conclusion that Ryan has to pee. Now I have taken all of Jack's winter accoutrements off and i am nursing him and i am feeling like Ryan is coming very close to peeing in his pants. Then I spot an empty McDonalds soda cup. So there I am in the back of my minivan with my baby on my left arm nursing away while I am holding a McDonalds cup in my right hand forcing Ryan to pee in the cup while he continues to cry hysterically. Finally a minute after peeing in the cup Ryan calmed down. It was quite the experience. Believe it or not we still go to the farm and cut down our tree. We just make sure Ryan pees before we leave the house and don't give him anything to drink on the way. I can laugh about this story now but I was crying right along with the boys when it happened. Happy New Year!

    1. Anonymous

      Thanks for sharing, Christine! That SO could have been me! Picture me at Disney this September with my 12-year old son who must have had to pee but refuses to use public restrooms (non-verbal so we had to figure this out). Me screaming, him breaking down. The "happiest" place on earth! LOL

  9. Kat

    My son got pissed off at Santa.. well not the real one.. but the fire department Santa. He comes around every year and gives out fire safety coloring books. My son had it in his head that he was getting 17 presents. We don't know where the number 17 came from, but 17 was stuck in his head. So when the FD Santa gave him a coloring book, he was none too pleased.. Meltdown in the middle of our block =( One day we will look back and recall this moment fondly.. just not today.. lol =D Happy New Year to all

  10. oneleopard

    thanks for your great post! We have done away with a lot of Italian traditions as well because our son stressed makes me stressed too. Our son also never wants to decorate the tree, visit santa or look at a camera for a photo. Most of our family is understanding and accomodates him thankfully, but he as well is done after 2-3 hours and has a meltdown.

  11. christmas eve with the family, we're Italian too…we've always had homemade pizza. they make a plain cheese one just for me. (others can eat it too). this year, it wasn't so bad over there. there was only ONE point where it was getting too loud for me, while I was trying to eat. but there wasn't any points this year where i wanted to leave early. so that's a win for my mum, who is BIG on family.

    anyway…i can do the presents, believe in santa…but i'm still awkward about thanking people for the gift or showing appreciation for it. i'm 33 now, officially documented as HFA (for the past 2ish years)…and seem to be the only one in my family on the spectrum.

  12. I'm pretty sure the only thing you might want to hear is this, "I get it." Have a great new year… in your family's way.

  13. I come from a large Catholic family that is all about Christmas traditions. So Christmas was the hardest part for me for many years. Our son is 10 as well and in the early days he just couldn't handle any of it. We've progressed greatly and I've learned that some traditions aren't worth the upset that comes with them… but I won't lie and say that I don't fight back a few tears as I decorate the tree alone each year.

  14. Great post! Joey is 4 and won't open gifts either, so I skip even trying to "make" him do it anymore. Although "Santa" did bring him his fave book, "Point to Happy", so once that was opened for him, he has been glued to it non stop! But seeing how he has 4 non ASD siblings, xmas morning is still a big to-do here. He will hide in the other room with his blankies eating his crackers (he eats Saltines like the King eats popcorn! lol) I don't force any of out traditions on him…. decorating, opening xmas jammies, reindeer food…., I look at it as WHY make him miserable doing something he has no interest in and making him upset? It's like torture to him. No need. Holidays are just different for him, that's all. And now I am rambling LOL
    Happy New Year!

  15. Always nice to know we aren't alone!
    It often breaks my heart too when the "what if" realization hits! But I wouldn't or couldn't swap my son for "ANYTHING" in this world-he's priceless!
    Happy New 'structured' Year! 🙂

  16. Anonymous

    Been with you two years…… Aside from the large family, YES YES YES. We are not alone after all and I wish I could put it in writing the excellent way that you share how it really is. To a healthy new year. P.s I had a benefit to get a hyperbaric oxygen chamber, but at moment is to "much" when he goes in, trying a new strategy.

  17. Last year we dragged out child to my brothers wedding. It was a disaster, we worked so hard to create her home comfortable quite environment in a hotel. We dragged her around through traffic, airplanes, unfamiliar restaurant surroundings. She cried and broke down through the whole three days. I ended up with a black eye and a two panic attacks,because no matter how hard I plan or pack we are not going to have a great time. We spent a couple thousand dollars, for me or my husband to pretty much miss the whole event. She was miserable and I felt horrible for thinking about leaving her out and then felt horrible for bringing her. I promised myself to make hard decisions in the future, decisions that the average parent never has to make. This year we went on a two day trip to a friends wedding and we left her at home with my MIL. Our little girl stuck to her normal routine and we were able to have a wonderful relaxing reconnecting trip. Don't get me wrong there was guilt and sadness and why can't we be just like those other parents with the sweet little flower girl. BUT we had a great time. I finally realized we don't need to play by the rules, we have an extraordinary circumstances and we need to make hard choices that are best for US and THEM. So just like you now do take out on fish night, include him as usual. Maybe next year get a fellow ASD parent or babysitter to watch him on the night you go to your wife's family. I know it seems incredibly selfish and its a hard way to think, but maybe give yourselves an opportunity to enjoy an event for once. I guarantee you he will not mind staying at home in his comfortable environment, your friends and other family want to help they just need to be asked. Give your incredible wife and yourself a break once in a while. Remember we make our own rules. If it works for us, don't let society or tradition dictate our future.

  18. Anonymous

    Spot on, AD! I would only add that it's even more painful when the cousins are your child's age or younger. Because then it's just right in your face how disabled your child is. [sigh] Happy New Year!

    1. Wow! that is us our son he is 4 and is high functioning w/ delayed speach and with that I can see the diffrance with family members the same age. Our family try to say he is not so bad but I can see it.
      We deal with it and move on

  19. Jackie Ross-Barber

    Autism Daddy, I'm New To Your Blog And FB Page And I'm Thrilled And Grateful To Be Able To Read And Share In Your Experiences And Posts. I Feel A Bit Guilty Though Because I'm Luckier Than Most. My 13 Yr Old Son Id A High Functioning Aspie With Severe Sensory Issues. Believe It Or Not I Can Relate To Some Of The Feelings And Posts Though I Do Realize My Dumb Luck That I Have A Child That Can Talk To Me, That Can Be Main Streamed In School, That Has A Couple Friends, Etc. As He's Gotten Older Some Things Get Easier And Some Just Don't And Probably Never Will. There's One Tradition That I've Had To Let Go Of That's Been Huge As It's All Year Round Just More Pronounced On Holidays And Celebrations. That's Eating. My Sons whole Life Eating Has Been A Struggle To Say The Least. There Have Been And Still Are About Literally 10 Things My Son Will Eat, Everything Else Is A Non Starter. We've Never Been Out To Eat Anywhere That Doesn't Serve French Fries As They Are One Of His Foods. We Rarely Eat At Friends Or Family's Houses Because Explaining Is Embarrassing For Him And Us And It Seems Like We've Missed Out On So Many Opportunities Because Of His Limited Food. It's Just Hard And I Miss Family Dinners And The Bonding That Can Happen When You Can Break Bread With The Ones You Love. ThankYouForYour Awesome FB Page And The Blog Too! And Most Of All Thanks For Allowing Me The Chance To Express Some Of My Loss And Sadness For My Lost Family Traditions As Well. Although It Hurts I'm So Relieved To Have Been Able To Say It Out Loud. Thank You All Again For Both Sharing And Caring.
    Goodnight, Jackie

    1. Anonymous

      I also have high functioning /aspie sons . I have 2 on the spectrum. they are chalk and cheese. I too know that I am lucky to have that end of the spectrum. I also feel guilty when I see what others go thru. lately tho I have found that no matter where our kids are on the spectrum, things are different for us, and this makes us / me sad. I find myself grieving for typical more at this time of the year so it becomes bittersweet. anyway just wanted u to know there are others that feel as u do.

    2. I too have a high functioning Aspie with food issues and I too have these same issues and I can totally relate.

  20. Anonymous

    My son is 3.5 and has low functioning autism. We're going to a birthday party today and there will be balloons. My stress levels are already through the roof as he will want to eat all non-edibles at the party and especially the balloons. Love your blog.

  21. Anonymous

    I have a son who has Autism and two neurotypical daughters. I haven't realized out loud that we too have given up traditions we'd like our son to be part of.. We just know what he will and won't do in our minds and go with it. It does make me very sad he doesn't share in the same joy his sisters do in the magic of the Holidays but we try to include him as much as he'd like. Sometimes you gotta ask yourself are we doing this for us or him? Do we need this or does he? It is hard to realize the answers. It is normal to mourn the lose of the idea we had of our children being before Autism entered the picture.

  22. Anonymous

    I have to admit I hate getting those bloody pictures cards from NT patents. My kid will not wear anything remotely Christmas and I have a streak of envy watching their perfect children , sit happily on Santa lap.

  23. Thank you for letting us share your journey. My wife and I have begun to let go of some holiday traditions as well in hopes of avoiding a meltdown. This year it worked and we all had a great time as a family. Thank again…love your blog.

  24. We don't bother with any of the holiday stuff (for many reasons), and I'm thankful for that. I can SO relate to your parting thought, though. We're not a close family but my son has some cousins that always invite us to birthday parties and such; we never go. It's just too much. That makes me very sad, but it is what it is, I guess. At least you have your family's support — we don't even have that.

  25. Our son is four, and severely autistic. For the past two years I have slowly been letting go of the traditions we've always done for our other three kids. No more making him open presents hand over hand. No more birthday cakes (he hates cake). I know my Christmas tree us always going to look like crap because he will rearrange it a million times. I figure if he needs to celebrate a little differently, then so be it. 🙂

  26. Abbie

    You made me cry. I have been a fulltime mom of a very large (tall) 50lb 4 yr old. We handled the holidays some was even fun, the concept was "gotten" this year. Our first pic w Santa at a special needa xmas party. It's a breath of fresh air to hear from another parent who's in it to win it just to realize everybody doesn't win and you just hope yours can keep up. If that was rambling feel free to write a book. I would def buy read and keep it as a reference. Thank you for writing.

  27. I can't remember how I found your blog this year. But I have enjoyed reading it so much. Mostly because you are able to put into words so much of what our own journey is like with twin 10 year old autistic boys – both severely affected. This post was spot on. We have really evaluated so much of what traditions stay and which ones go. Not sure if you deal with this or not but one thing that is hard for us this time of year, and for birthdays as well, is that people really don't know what to get my kids. I have to keep telling them that "yes, they are still into Elmo. they still love baby Einstein." And that feeling you described when you go to a party and you spend so much mental and physical energy making sure your kid is OK – we live that too. People have no idea what that is like.