To Our Thanksgiving Host, From the Mom of the Child Who Won’t Eat Your Meal

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Dear Thanksgiving Day Host,

Before we arrive in a few days, I just wanted to take a minute and thank you for offering to host Thanksgiving Day dinner. I am beyond thankful. In fact, when you said, “Why don’t you guys come here?” I swear I hung up the phone and screamed, “Hallelujah I don’t have to stick my hands inside that cold, dead bird and pull out whatever the heck is in there!” That alone makes you almost like a Thanksgiving Day God to me.

To show my appreciation of getting to forego this gross, yet delicious tradition, I promise I will eat everything you put on that Thanksgiving Day feast table! The turkey (white and dark meat), the stuffing, the mashed potatoes (with or without lumps), the gravy, the cranberry sauce, the corn and even the sweet potatoes (which I kind of hate). I’m sure my family and I will love it all — well, all of us minus one.

My son Ryan’s not going to eat any of it. Nope. Not a bite. Not a taste. But perhaps a lick. A lick is Ryan’s way of confirming that whatever touches his tongue isn’t “deadly” and won’t kill him. So no matter how many stars the recipe got on Allrecipes.com, Ryan’s not buying it or trying it. I’m sorry. Sort of. Not really.

Just keep in mind, no matter how much work you put into the feast, no matter how much time you spent making the table look like something Martha Stewart would drool over, he’s not trying to ruin your Martha moment. You may very well make a great pumpkin pie, but my kid isn’t asking for firsts or seconds. If the pie smells good, Ryan may take a tiny lick with the tip of his tongue, which may horrify you and your other guests. But honestly, if even the very tip of his tongue touches a piece of that pie, you shouldn’t be offended by what is perceived as lack of manners. You should be thankful he thought your pie smelled good enough for the tongue test. Chances are, it will not pass the tongue test (so few things do), but the fact your pie got tested by him at all is a much better rating than any star you’re going to get on AllRecipes.com.

I know I’ve talked to you before about how autism makes Ryan extremely sensitive to tastes, smells and textures, but with all the excitement of the perfect Thanksgiving Day feast, sometimes I think you forget. I know the pictures in Bon Appetit Magazine don’t show a photo of a kid happily licking a piece of pumpkin pie, and it may not show Velveeta Shells and Cheese gracing the exquisite holiday dinnerware, so perhaps Ryan doesn’t quite fit in the picture you have in your mind of this perfect day. But I want you to know that it’s even more difficult for him to be asked to “just try it.” He can’t try it, he won’t try it, so he’s not going to try it. His body won’t let him, so please respect that and know he is happy and not starving.

Even though his plate will consist of a bun and the Velveeta Shells and Cheese we brought from home, rest assured, Ryan is still thankful to be a part of the day. A day that includes sitting around your table listening to 12 people having 12 different conversations while the television blares the much anticipated football game as his sensory system takes in the smells of 12 different foods coming from the kitchen. Ryan is trying to be a part of the day, a part of the picture, even if his part looks different than you imagined.

I don’t want to apologize again this year because I’m not sorry, I’m thankful. No more “I’m sorry he didn’t eat” or “I’m sorry he doesn’t like (insert any word that is not Velveeta Shells and Cheese here) or “I’m sorry the holiday music was infused with some Spongebob scripting.” No, I’m done apologizing. The only thing I’m sorry about has to do with me, not him. I’m sorry my boy may never knew how delicious it is to scoop up stuffing and mashed potatoes in one bite or how fabulous a piece of cold turkey is the day after Thanksgiving. But I’m grateful my son has the ability to express himself in whatever way he can. I’m thankful he has a voice to say, “That looks gross” or “No way is that going in my mouth.” I’m thankful he is able to tell me, and you, what his body can and cannot tolerate.

The only thing I’m sorry for is that you may be overlooking what matters most.

You may have the perfect idea of what Thanksgiving Day is supposed to look like. Maybe having someone who is different at your table skews that picture a bit. But isn’t learning and sharing one another’s differences what the very first Thanksgiving Day feast was all about?

Ryan and others living with autism are trying to understand our differences, too, and they hope you will provide them with the same courtesy. Ryan could not imagine ever letting his potatoes touch his stuffing (if he were to ever eat them), let alone putting two types of food in his mouth at the exact same time, even though I can’t imagine ever eating just a bite of potatoes without stuffing. That doesn’t mean I’m wrong or he’s wrong. It just means how we eat and what we eat, be it Thanksgiving or any other day, is different.

So, this Thanksgiving (and the other 364 days of the year), my son and I would be incredibly thankful if you took some time to try and understand him rather than judge him. To appreciate him rather than disparage him. To accept him rather than dismiss him. And maybe then, your perfect pie, your beautiful table and your pot soaking in the sink with remnants of Velveeta Shells and Cheese stuck to the sides, won’t matter quite as much as they did last year. Maybe you and your guests could take a lesson from the guests gathered around that first Thanksgiving Day table by recognizing there are more things you have in common than there are differences. And in order to share the the table, the feast and the world, we have to learn to accept one another’s differences, even if it means tongue-testing the pumpkin pie.

Thanks for listening. Thanks for understanding. Thanks for accepting. And thanks for cleaning out the turkey.

Sincerely,

Ryan’s Mom

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or illness during the holiday season. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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To the Loved Ones Who Get Why We Bring a PB&J to Thanksgiving Dinner

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The other day my cousin sent out a group text giving out the details for the Thanksgiving party she and her husband are hosting. Pretty soon my family members were bantering back and forth with tales of past feasts and pictures to prove it. I couldn’t help but pause for a minute. You see, out of all of the things listed on the menu, my daughter will not eat one thing. Not the yams that remind me of my mom who has since passed on. Not the green bean casserole prepared by my cousin. Not even the star of the show, the turkey. This saddens me, but we will still make the best of the day.

My husband and I have known for years that our daughter is a picky eater. She takes it to a whole other level. There are many foods that just don’t taste right or feel right in her mouth. This is just one part of her autism, a disorder called sensory processing disorder. Her brain doesn’t process sights, sounds, smells, textures and tastes the way it should.

On Thanksgiving, turkey will not be on her plate. Thanksgiving is meant to be a joyous occasion. If the traditional Thanksgiving foods are a part of my daughter’s meal, she will be anxious and will not enjoy the day. Instead, I will pack her a lunch full of her favorite foods.

Thankfully for us, our family members understand my daughter’s challenges. They love and accept my daughter just the way she is.

On this day of giving thanks, I’m thankful for family members who understand that while the turkey is an important part of the day, it’s also a day for making memories with loved ones.

To my family, I just wanted to say thanks for keeping mum about my daughter not eating the foods you so lovingly prepared. You know this is no reflection of the love she feels for you. She cherishes the time spent with you. In her mind, the fact that you love and support her in spite of her challenges means the world to her. As her mom, your acceptance of her as a member of your extended family is huge. Unlike those with visible disabilities, hers are hidden. That doesn’t make them any less difficult for her or us as her parents. In some ways, it’s harder.

Thank you again for going out of your way on this memory-making day. My daughter cherishes these moments.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness during the holiday season, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To the People Who Call Me Brave for Sharing My Asperger’s Diagnosis

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At the beginning of every class, there’s always a bit of an icebreaker. Sometimes it’s a specific question like, “What’s your favorite movie?” (“The Cabin in the Woods,” incidentally) or “Who’s your favorite band?” (This can get awkward when you only listen to musical cast albums.) Or it can just be an open-ended “introduce yourself” type of thing.

Whatever the case, I usually mention the fact that I have Asperger’s syndromeMost people just smile and nod and file it away in the back of their mind. Some people, though, will ask questions or mention a relative or friend they have with the same diagnosis.

One reaction I hadn’t received until fairly recently is one that initially baffled me, and it still continues to throw me off. Some people, when I share my diagnosis, step in and congratulate me on being brave enough to disclose that information.

So for those of you who say that to me, I want you to know it’s not wrong to think or say that. I’m not saying you’re misguided or offending me in any way. Sadly, we do live in a world where there’s still a serious stigma surrounding mental illnesses and disabilities. That being said, it’s never crossed my mind to keep my diagnosis a secret. I mean, there’s always the chance someone will judge me for it or try to argue with me or give me a lecture about how Asperger’s is a completely made-up diagnosis. But one thing I’ve learned over the years is those people simply aren’t worth my time. I’d rather identify them right away, so I don’t have to waste precious energy trying to argue with a brick wall.

There’s also the fact that, for years, I wasn’t diagnosed. I was about 16 when I finally received my diagnosis, and up until that point, I’d simply been labeled as a bad kid. I spoke over teachers, I talked back, I threw “tantrums,” which were actually meltdowns.

For years teachers had called me a bad kid, and it came to the point that I thought I was a bad kid. Those teachers were smarter than me, after all. If talking back made me a bad kid, even though I had no concept of what it was or how I was doing it, then I was a bad kid.

For years I believed this, and it wasn’t until my diagnosis that I finally had something to say back to those teachers. Even if the worst years were behind me, it comforted me to know I really wasn’t a bad kid, and hopefully, no one would see me as that again. I was just a kid who was confused. I didn’t understand the concept of talking back, and I didn’t know why teachers got mad when I questioned them. My tantrums, which were always scarier for me than anyone else, weren’t a result of me being spoiled or being a brat. It was the result of my being overwhelmed. It’s something I could’ve told people if I could’ve formed the proper words at the time.

I never had a chance to tell my teachers or former classmates about my diagnosis. I never had the chance to explain myself in an articulate way. Now I finally have that ability. I can tell people, right off the bat, that I have Asperger’s.

Sarah smiling

When I first started writing this, I thought I’d describe it as a disclaimer. But now, I realize that’s not right. “Disclaimer” has a bit of a negative connotation. It’s more of a prologue than anything else. It’s the part of my story that needs to be understood before you can understand the rest of it. Because even though my disability doesn’t define me, I help define it.

The true definition of Asperger’s comes from the people who have it. Their lives, their stories and their personalities all shape what we know about Asperger’s. So, yes, I will share my diagnosis, but it’s not because I’m brave. I share because even if you know what Asperger’s is, know someone with it or even have the diagnosis yourself, you don’t have the complete picture. I don’t have the complete picture. No one does. But we can slowly piece it together, and if I can add one more piece to someone’s picture, then it’s worth sharing it, even if they judge me for it.

I don’t see it as being brave; I see it as being me. I’m doing a service for you by expanding your definitions and understanding, if only a little.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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To the Woman Who Taught Me About Being a Special Needs Mom

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Dear Mom,

I tell you all the time how much I appreciate you. I do what I can to show you that gratitude as often as possible, yet I always wish I could do more. 

You are the one whose guidance and love taught me to love myself the way I so comfortably do, and that is not a small thing. 

It wasn’t quick and easy for you, either. As a mom myself, now I know that.

When you adopted our brothers, all of them with special needs and big, sounding diagnoses for their itty bitty bodies, and loved them until they learned to love themselves, you were guiding me.

When you fought for legal custody of our two sisters who came from abuse, abuse that was sadly familiar to you and a cycle you insisted on breaking, and you loved them until they learned to love themselves, you were showing me.

While all eight of us were loved equally, without ever knowing how hard it was for you, you were teaching me.

Now, as the mom of four fantastic sons myself, I see how easily these lessons prove themselves in my own parenting. When my boys come to me comfortably with questions, when they ask for snuggles knowing I’m happy to give them, I feel a masterful mix of me and you in my parenting.

When I’m smiling to myself because of some fancy-dancy parenting maneuver I’ve managed to pull off, I’m also smiling at you.

And there have been plenty of fancy-dancy parenting maneuvers! When my son, Shay, wasn’t talking by age 4, when he was stimming and toe walking and insisting on forever being naked, you showed me the way to teach skills while embracing his uniqueness. You took sign language courses and brought home a fun new way of talking, taking advantage of engaging hand gestures placed near your mouth. He began to talk. I took the baton and ran with it, and taking your cue for creative posturing, I discovered fun ways to help him want to keep his clothes on.

When my son, Declyn, showed obvious signs of sensory challenges and a fear of eye contact, I hardly needed you to show me what to do, though I love that we did those things together. As a family we encouraged eye contact creatively, discovered ways to help him keep his food down (mostly!), visited playgrounds intentionally over and over — not pushing him to become socially comfortable but believing he could and celebrating each step of the way — until he became Mr. Comfortable.

Because you have not only helped my brothers in these areas but also hundreds of others around the world, my sons and I knew we were in good hands. It was a simple question of enjoying the work.

So thank you again, Mom. Please know that even when I’m not expressing my gratitude for everything you do, I’m building upon it.

I love you, Mom. You are my teacher, my friend, and even sometimes my student. Or so you tell me. Which I know is also a way of teaching me to be a student to my own children.

I’m forever grateful you never let us see that we were difficult. Life always felt fun while we felt supported. Which helped me do the same organically for my own sons.

This cycle of love is far superior to the cycle of abuse you were burdened to change. Thank you for changing it.

Your dedicated and loving daughter,

Tsara

The Mighty is asking the following: Write a letter to someone special in your life. What do you wish he or she knew? How has he or she made a difference? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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When My Son Told Me Why He Threw Up During Speech Therapy

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My son and I have the best talks while driving around town. His first sentence came out in this car. I don’t know why he can carry on a conversation so much better on four wheels, but maybe the car has nothing to do with it. Maybe it’s the fact that he’s back there and I’m up here. No pressure to read my face. 

“Hey, buddy! Check it out. We are right by your old school where you took speech.”

“I know. Mommy, I have to tell you something. Remember when I threw up there?”

“I can’t believe you remember that… ick. Yes, baby. You were sick.”

“No. I wasn’t. I wasn’t sick. Everyone was trying to get me to talk. It was hard, so I threw up.”

I’m glad he couldn’t see my face.

I looked back on that day. No fever. I took him home and he was fine, but now I was the one who felt sick. Was it really that much stress? I can’t believe I never thought of that. I wanted to pull over and hug him. I wanted to tell him I was sorry. I wanted to explain that the doctors told me if he didn’t speak by a certain age, the words would never come. I wanted to tell him I refer to those years as the, “I don’t know what the hell I’m doing,” years. It had to be hard then, so it could be easier now.

It had to be hard for a tiny child?

Guilt overwhelmed me when I thought of what I really should tell him. Those other things were the truth, but so was this…

“You worked so hard as a preschooler because Mommy needed your words.” I wanted to tell him those early years scared me, more than today scares me and sometimes even more than the future scares me. I was afraid he was in there and would never find his way out. I would never know him. Yes, I wanted to help him, but I wanted to help me, too.

I couldn’t tell him this. He wouldn’t understand, and my tears would only scare him.

This is the part in the story where I’d usually tell the reader how I learned some big lesson and then tie it in a neat little heartwarming bow, but I can’t. Was it right to push him? I don’t know. I do know now that autism is not the sprint to the finish I hoped it would be at the time. It is a marathon you train for every day. If Colin never spoke, our journey would be different, but his heart would be the same. I know that now. The nonverbal children I have met over the last few years have taught me as much.

We sat in silence for a little while. I looked at him in the rearview mirror as he happily leafed through library books.

“You know that sometimes mommies don’t have all of the answers, right?”

“I know.”

I wonder how much of this parenting thing is going to involve learning to forgive myself. I wonder if every decision will feel like bricks on my shoulders.

Most of all, I wonder if the,“I don’t know what the hell I’m doing,“ years ever really end. Maybe they never will, but I know more than I did yesterday. Today, I’m holding on to that.

mom about to kiss son
Photo credit: Gene Rodman

Follow this journey on RaisingJedi and the RaisingJedi Facebook page.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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17 Tips to Make Thanksgiving More Comfortable for Kids With Autism

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Thanksgiving is a holiday that involves a lot of planning, but for many families, it goes far beyond turkey and hosting. For children on the autism spectrum, Turkey Day can be a chaotic and overwhelming day, so we asked parents in our community if they have any special tricks to make it more comfortable for their kids.

Here’s what they had to say:

1. “Arriving early to venues before any crowd or noise arrives helps tremendously. It allows my child time to acclimate and ease into the ‘chaos’ of the holiday.” —Tina Annette Erwin

2. “Don’t expect them to change their routine because you are changing yours.” —Stephanie Loubier Weiss

 

3. “An Xbox!” —Susan Roudebush Robertson

4. “We’ve learned to dress them for comfort, not the occasion. Our ‘holiday’ outfits are usually sweats or leggings and hoodies or soft tee shirts.” —Lauren Cockrell

 

5. “Dinner has to be at its normal time… no eating at 2 p.m.” —Alecia Rozanski Edmonds

6. “Have it at our house!” —Amy Elizabeth Kennedy-Bang

7. “Remember to let him enjoy the holiday his way. If he spends the whole time with headphones on and rocking in a chair, that was fine by me.” —Christy Vogel

 

8. “Prepping for a holiday event is similar to invading a country in our home. Mapping out escape routes, easy enters and exits, places to hide, sound proof equipment, diversions and distractions, not to mention bringing along a backpack full of arsenal (toys, electronics, food, drink). We start talking about Thanksgiving the second Halloween is over. I’m pretty sure a space shuttle launch requires less prep time.” —Brittany Van Arman-Miller

9. “We always bring food we know he will eat. It’s easier on all of us.” —Jennifer Roberts Bittner

 

10. “We’ve been known to have nuggets for them.” —Kellie Luke

11. “Make sure the iPad is charged and ready to go… don’t forget the charger.” —Melissa Cote

 

12. “We let our son tour the buffet before anyone else and without an audience. He can touch and smell suspicious foods and if he wants, taste. This has saved many meltdowns.” —Lindy Burnett

13. “We always plan to make a quick exit if it’s too overwhelming for her.” —Victoria Rusay

 

14. “Lots of prep telling him what to expect, where we are going (describing the location to help him remember if he’s been there before), who will be there, emphasizing people he knows.” —Elizabeth Barnes

15. “I put ketchup on his turkey.” —Breanne Guzman

16. “No matter where we are celebrating our holiday, we find a little spot away from the activities where [our child] can escape to to be alone.” —Lauren Swick Jordan

 

17. “I let [my son] take breaks through the day.” —Corvette Shannon

*Some responses have been edited and shortened for brevity.

Do you or a loved one on the spectrum have any Thanksgiving day tips? Let us know in the comments below.

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