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This Thanksgiving, Please Hold the "But"

11/20/2017

14 Comments

 
For years I held out hope, maybe THIS will be the year he will try a bite of stuffing! Maybe THIS will be the year, family members won’t nag him to “try it”. Maybe THIS will be the year the stares and whispers of why I bring Velveeta Shells and Cheese and let him eat THAT will be stifled. Maybe THIS will be the Thanksgiving my son feels comfortable and welcome. Maybe THIS will be the year, friends and family can hold the “but”.
 
It’s funny, I gave up on THIS being THE year, years ago, because I accept and understand my son, but, we all have those family members who think that maybe THIS year things will be different, which translates to, HE will be different. If you have one of those family members, feel free to print this out and put it on the table as a sort of placecard for guests.
 
THIS Thanksgiving won’t be any different than last year because:
 
1. He still has autism. 

2. He has made great strides in sooo.. many areas and we are sooo... proud of him, but, his diet isn’t one of those area. 

3. He still has autism.
 
4. He may now wear khaki pants instead of fleece pants to the Thanksgiving table, but, he still is not putting wet, soggy stuffing in his mouth. Nope, didn’t happen last year, isn’t going to happen this year. 

5. He still has autism. 

6. I know his diet isn’t great, he knows his diet isn’t great, but, what his brain knows and what his body feels don’t match, and your pumpkin pie isn’t going to sway that connection. 

7. He still has autism. 

8. We are so proud of all that he has accomplished, both academically and musically this past year, and we know you are too, but, making District Chorus and getting a B in College Prep English won’t make your mashed potatoes any less lumpy to him. 

9. He still has autism. 

10. Can you believe he went to the Homecoming Dance this year and danced with friends and stayed over an hour?!! Wow, right? Yeah, he has made some gains socially, but, he still isn’t eating “even just a tiny bite” of that turkey. 

11. He still has autism. 

12. I’m thrilled he filled you in on the upcoming musical he is a part of and I LOVE how grateful you are for getting him to chat with you for a few seconds, but, his sensory system is still so sensitive to different food textures that his taste buds think your cranberry sauce will kill him. 

13. He still has autism. 

14. I love that you see how hard he is working, how much he has grown and in sooo…many areas, so this year, how about just commenting on all of that, praising him on all he has accomplished so he and I can hold the buts because… 

15. He still has autism. 

Ryan had autism when he was a picky toddler and he has autism as a teenager and is still just as "picky" when it comes to eating. He is not trying to be difficult, he is not "spoiled", he is autistic and his taste buds don't "feel" food the way yours and mine do.

​Some day, my son may try a bite of turkey, some day he may think that the pumpkin pie tastes as good as it smells, but, that will be on his terms if, and when, he is ready. So, I would love it if THIS is the Thanksgiving YOU change so my son doesn't feel like his progress is diminished by the "buts" while you pass him the rolls because he will absolutely eat one of those, no buts about it.
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Ryan will carve a pumpkin, but, there isn't anyway he is going to eat a pumpkin.
14 Comments

Bad Santa

12/17/2013

1 Comment

 
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Santaphobia, an overwhelmingly, terrifying fear of Santa Claus may not be found in the DSM-V as a true phobia diagnosis, but, oh it is real. Just check out Ryan hiding behind the fake presents at Santa's faux workshop at the mall. We do not have one photo of this child sitting on Santa's lap. Not even one of those crying, screaming, reaching for Mommy photos that are so funny to look at when the kids are obnoxious, not afraid of anything, teenagers. Nope, Ryan wouldn't go anywhere near that jolly old elf. Ryan didn't care about Santa's twinkling eyes, his merry dimples or his beard as white as snow. It also didn't matter if Santa had a sack full of toys or a handful of candy canes, my boy wanted nothing to do with him....then this year at the age of 12 (yes at 12 Ryan still believes in Santa...don't judge) a small break through occurred on a cold winter's night.

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We have a very cool local fire company that cruises through our township with Santa on the front of the firetruck stopping for kids to tell Santa their Christmas wishes and handing out candy canes. For the longest time, the firetrucks came right past our house which was so AWEsome! We would forego our coats and hats and run outside, camera in hands to capture the moment. While the rest of the family was running to Santa, Ryan was running from Santa....fast....upstairs...to the bathroom....where he immediately locked the door. At first, with Ryan's sensory sensitivities, I thought his terror stemmed from the occasional wail of the siren from the firetruck that let kids know Santa was on his way. After Santa was safely down the street and out of sight, I would unlock the bathroom door and find Ryan cowering on the floor hands over his ears, so it seemed like the siren fear was a plausible theory. However, the siren theory didn't explain Ryan's fear of Santa at the mall, Santa on the street corners, or Santa who visited the holiday parties at Ryan's school (which by the way, he hated....because of Santaphobia). Ryan's fear of Santa was extreme and puzzling....until he finally found the words to tell me.

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Many kids, especially toddlers have a fear of Santa Claus or people in costumes, it's a pretty common fear, but I always thought it was funny that Ryan had no fear of the characters at Disney World, Chuckie Cheese or those creepy fake characters hitting you up for cash on the streets of New York City for a photo op. Ryan's fear was strictly Santa Claus. Perhaps his phobia was not Santaphobia, but, actually Pogonophobia which is a fear of beards. Mickey and Donald don't have beards, Chuckie Cheese appears to shave daily, but, Ryan has known other people that have beards and these folks' beards did not cause Ryan to run away and hide in the back of the car. The other possibility may be Hagiophobia which is the fear of saints. After all, Santa Claus is Saint Nicholas, but, since we know so few saints, it's hard to test that theory. Then I started to wonder, if maybe, Ryan hid under the Christmas tree one cold, winter's night as Dan and I watched one of our favorite adult holiday movies of the season, Bad Santa. Billy Bob Thornton as Santa Claus would strike fear in the bravest  of children.

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Bad Santa, is without a doubt, the most inappropriate, raunchiest, wrongest (horrible grammar, but trust me, "wrongest" is fitting) Christmas movie out there, and yes, I have to admit Dan and I watch it. Ok, fine, we own it. Ok, fine, whatever, we own Badder Santa which is even raunchier and while I'm sitting in the confessional booth, I may as well admit to rewinding some of the wrongest scenes and laughing until I cry. I know it's inappropriate, I know it's un-Christmasy, and I know there is not a Badder Santa around than Billy Bob Thornton, but, my gosh it is pee your pants funny. I promise that every time we have watched it, Dan and I made sure that the kids were busily occupied or sleeping. Which is kind of hard to believe since by the age of five, our kids could quote all of the curse words Clark Griswold rants at the end of Christmas Vacation when he receives his Jelly of the Month Club subscription. I guess a frustrated father during the holidays is acceptable in our home, but, fortunately we draw the line at drunken, cussing, fornicating Santa Claus. Maybe one night, Ryan snuck under the Christmas tree as Dan and I watched Bad Santa and heard Billy Bob Thornton dressed as Santa drop the F bomb as some innocent child sat upon his knee or maybe Ryan caught a glimpse of drunken Santa beating the stuffing out of the fake reindeer after crawling off the escalator in a drunken stupor. Or maybe, it's not Billy Bob Thornton's Santa that Ryan worries about, it's the Santa who actually puts the presents under his own tree that freaks Ryan out a bit.

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As any parent knows, the holiday season can be a time of stress and madness. All the expectations that the likes of Martha Stewart, Nate Berkus and those horribly perfect, crafty moms who pin away on Pinterest, put upon us mothers are ridiculous. Trying to make the most wonderful season for children even more wonderful by baking the right cookies, making gingerbread houses that Hansel and Gretel would be jealous of, decorating the house with enough lights to make your neighbors wear sunglasses at night, and trying to deliver on the, all so important, Christmas Gift List. Christmas is after all, the most wonderful time of the year, which begs the question, why do we try and kill ourselves to make it more wonderful? I would love to blame it on Facebook and Pinterest, but sadly, I have been trying to make Christmas perfect long before social media pressed upon me the importance of such a task.

With all the holiday stress, all the holiday perfection, the one guest who never fails to show up over the Christmas holiday, completely uninvited is good old Denial. Yep, Denial constantly reminds me that Christmas time is a magical time for children and that all children feel the same way about Christmas....complete and utter JOY! With Feliz Navidad pumping out of the stereo, as I baked yet another batch of Christmas cookies that will be found in the freezer in April and tossed in the trash, Denial would yell, "Yes, sure, the lights, the decorations, the changes in routine may be difficult for a kid on the spectrum, but Christmas ONLY comes once a year, so you have to make the most of it!". It doesn't matter that even with Denial putting such notions in my head, in my heart I often wondered if all the holiday madness was too much for a boy who hates change, who has a photographic memory and remembers exactly what you did last year, so, heaven forbid if you don't remember the precise glass he drank his special Holiday Punch out of, and who loves his family, but in small doses, not everyone all at once. 
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Yes, Denial was there forcing mittens and a hat on a three year old boy as I pinned him down amongst the Douglas Fir at our annual "Find the Perfect Tree" outing at our local Christmas tree farm. Denial also helped me stuff my boys' flailing arms into sweaters and stiff shirts for our annual Christmas card photo begging Ryan in my best Grinch like voice (with swear words to match Billy Bob Thornton) to "just sit still for five minutes" while he yanked, tugged and wailed at his scratchy, yucky clothes for the perfect family photo (if you happen to get one of our cards, know that the picture on the card is a fallacy). Denial has sat shotgun next to me as I have dressed the kids and taken them to sit on Santa's lap at the mall, assuring Ryan that Santa is not scary and begging him to sit on his lap, just one time in order to capture another phony photo. And Denial is also there every year, including this one, when I beg Ryan for his Santa list and race around trying to fill his near empty list with things I hope he likes.

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Ryan never really played with toys, not in the way a neurotypical kid does, so Christmas shopping has never been easy. Santa would end up "making" toys, and wrapping them up, just so Ryan had something to open. Most of the toys would be tossed aside once the one and only coveted electronic device or video game was opened. Even when Ryan was little, if the toy didn't beep, light up or provide him with sensory stimulation, he wasn't interested. The one exception was wooden blocks, which Ryan would scatter on the floor then roll his body all over them for sensory feedback his body was craving after tolerating another Christmas Season with Bad Santa. Of course, I did have my Good Santa moments and I tried to be a fair and equitable Santa. Santa didn't feel it was "fair" if Ryan's siblings had more gifts, more presents or more money spent on their gifts, even though the gift receiver could have cared less. Even this year, Ryan has three video games on his list and that's it. Poor Dan stood in line on Thanksgiving night (yes, the horror....we broke the "No Shopping on Thanksgiving Rule" and as evidenced by the wait time at the check out, clearly hundreds of others did too) to score Ryan an iPad Mini. A $300 item that wasn't even on Ryan's list, but Santa thought he would like one. The Mini was returned the next week when Ryan assured me he did NOT want an iPad Mini and if he got one he was selling it. Even Bad Santa knows that's a bad idea.

Picture"Bad Santa", Dimension Films
Perhaps Ryan's Santaphobia didn't stem from an accidental viewing of Billy Bob Thornton as Bad Santa, maybe the Santa Ryan fears is the one who tries so hard to make Christmas perfect for him and his siblings that she winds up behaving like a demonic elf. Ryan loves Christmas. He loves all the treats, the traditions, the Christmas shows (especially The Grinch, ironic isn't it?) the presents and the music. What Ryan's mother needs to tell Denial is that Ryan is happy celebrating Christmas without a list of exactly 10 gifts (no more no less), a perfect Christmas tree, a perfectly candied gingerbread house, Martha would be jealous perfect cookies and a perfectly posed family on a phony Christmas card. Maybe if Mom's Atelophobia (the fear of imperfection) would subside, so would Ryan's Santaphobia.


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As for this holiday season, Ryan still suffers from Santaphobia, but, he had a bit of a breakthrough this year. Although Ryan started the evening off hiding in the car while we all went and greeted Santa on the next street over (with all the housing development, Santa can no longer hit every house, you have to meet him on the corner), some progress was made. When I told, the very young, very hip, very cool Santa about Ryan's phobia, he jumped down from his perch on the fire truck, gently walked to the car and wished Ryan a Merry Christmas with an outstretched white gloved hand holding a candy cane as a peace offering. When Santa asked Ryan if he's been good, Ryan got out of his hiding spot, made his huge, trying not to smile face, and with little to no tremble in his voice, Ryan said, "Pretty good". With that, young, cool Santa high-fived my boy and walked back to his handful of tiny, waiting fans. As Santa walked away, Ryan was grinning from ear to ear, no longer trying to hide his Christmas joy. Ryan immediately scripted in his best Agnes voice from Despicable Me, "He's nice, but scary, like Santa."

Ryan then assured his worried, guilt ridden mother, I mean Santa, that his Santaphobia didn't stem from his Atelophobic mother, or his concern if he'd been naughty or nice, and he didn't see Santa as the pre-curser of Mommy losing her holiday mind. It wasn't the fear of the beard or the fear of saints. Ryan's fear came from the fact that "Santa is a stranger who creeps down your chimney, comes into your house when you are sleeping and that's just creepy." For someone like Ryan, who thinks so logically, a man dressed as a giant elf, regardless of his degree of jollyness, who breaks into your house when you are sleeping, should not be someone whose lap you sit upon, but someone you should run and hide from. So, although Denial and I may have contributed to Ryan's Dentrophobia (the fear of Christmas trees) after torturing him year after year seeking the perfect Christmas tree and I may have ruined his chances of being a model due to Fotografizophobia (the fear of having your photo taken) from all those holiday card photo shoots that went up in flames, I had ABSOLUTELY NOTHING to do with Santaphobia. Whoosh. Even though, I have provided Ryan with years of therapy material, I think I have also helped him develop phenomenal coping skills. That most certainly make me Good Santa, don't you think?

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Still a little uncertain, but a huge breakthrough!!
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