To the New Special Needs Parent: Sorry About the Internet

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I believe the Internet is terrible. There, I said it. I realize no blogger should admit this, but it’s true. I was recently asked by a family member if I could help the mother of a child who is having trouble coming to terms with the strong possibility that her son most likely has autism. I began to think of all of the cool, funny or helpful sites. I was about to suggest them, then I remembered the dreaded comments section. That is a rabbit hole no new autism parent should fall down.

I was recently chatting with a fellow blogger about this topic. He mentioned how an adorable video of a toddler singing the “Imperial March” from “Star Wars” got a few thumbs down on YouTube. How does that even happen? Was she singing off key? Did the viewer think that by liking the video he would support the Empire? I don’t know about that. But I do believe that, for a group of the population who hates being judged and given unwanted advice, we sure do judge and give unwanted advice.

I recently wrote a story about my son having a rough time at the grocery store. The point of the story was that a lot of people judged my parenting, but one guy helped. In the story, I mention that my son is drinking an ICEE.  I almost didn’t put that part in. Why? Someone was totally going to tell me that I suck for giving my son and ICEE. I wrote it in anyway, and guess what? There were actually more than a few Judgey McShamepants comments. My favorite part is that the comments started out something like, “Yeah, people who don’t understand shouldn’t judge us… but maybe stop giving your child sugar.” I just had to laugh. I have come to a place in my journey where I can laugh. That does not happen overnight.

Go back in your mind of the first few months of your child’s diagnosis. If you were anything like me, you were fragile. I read article after article, looking for knowledge. What I found were different ways in which to blame myself. There were a million things that I did wrong. There were a million causes. There were a million therapies. Early intervention was the key, so I had to get started.  So many choices, what if I chose wrong? The pressure was building, then there was the anger.

It seemed like all of these parents were angry. They were angry at teachers. They were angry at doctors. They were angry at the government. They were angry at parents of neurotypical kids. Behind anger is always pain. I didn’t want to be that angry. I didn’t want to hurt that much. I walked away from the online community, and it has only been recently that I walked back. I came back with positivity after fully accepting autism and embracing our lives together.

For those of us further along in our journey, we have so much to share. We are passionate. Passion does not need to be angry. Passion does not need to mean judgment. Passion can be gentle. Passion can be welcoming.

It is OK to feel all of those things. We all have. However, before I ever click, “publish,” I do my best to consider the mom behind her computer. She is lifting up her glasses and dabbing her eyes. Before causes, before therapies, before frustrations, there is her. She needs to know she is doing a good job. She needs to know she is powerful. She needs to know there is an army of parents behind her. Sure, we might be carrying coffee cups and wearing wrinkled pajamas, but that’s our sexy, sexy uniform.

So, to the new moms of spectrum kiddos, pull up a mouse pad. Take what you want and throw the rest away. Everything is not only going to be OK, it will be great. Oh, and don’t let anyone tell you that you can’t rock the messy bun. It totally works on you.

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.

Lead photo source: Thinkstock Images

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Man With Autism Allegedly Told ‘His Kind’ Not Allowed in Restaurant After Incident

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The mother of a young man with nonverbal autism says a restaurant manager in Cedar Hill, Texas, told her family to leave after complaints from other patrons on Tuesday night.

Wendy Jackson told WFAA that while eating at Razzoo’s Cajun Cafe with her twins, a manager pulled her aside, asked “what’s wrong” with her son and said customers saw him licking the top of a hot sauce bottle. The manager then allegedly said “his kind” was not allowed in the restaurant.

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Jackson says she’d apologized, offered to pay for the bottle and asked if they could finish their meal, but that they were ultimately kicked out.

Razoo’s CEO Jeff Powell told WFAA he was alerted of the incident and is reviewing the allegations but that all people are welcome in the company’s restaurants.

“All I can say is our president is taking the time to fully investigate the incident, and a full response is forthcoming,” a different manager at the Cedar Hill location told The Mighty. “But if you’re asking if people with special needs are welcome at our restaurant, the answer is absolutely.”

Upon hearing about the incident, many customers voiced their outrage with Razzoo’s online.

“You should replace your management and educate your staff. How dare you kick out someone for being special needs,” one person wrote on the restaurant’s Facebook page. “That is absolutely disgusting and completely discriminatory practices.”

“A properly trained manager could have educated the wait staff and customers and had a much more positive outcome,” another wrote. “Ignorance to autism is just unacceptable these days.”

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Dad Creates 7-Part Sci-Fi Book Series With Autistic Main Character

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Brian Tashima, a musician who lives in Vancouver, Washington, is writing a seven-volume science fiction fantasy book series that features a character with autism. He’s writing the series because his 17-year-old son, Torin Tashima, who has autism, asked him to.

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Torin Tashima with his dad, courtesy Brian Tashima

When Torin was 12, he was into reading books like “Harry Potter,” “Percy Jackson” and “The Hunger Games.” Torin turned to his dad one day and asked him to write an original sci-fi. Tashima agreed and decided to use his son as inspiration.

“With these books, I really wanted to emphasize the positive aspects of being on the autism spectrum and create a character that saved the day with his special qualities, not despite them,” Tashima told The Mighty via email.

The books follow 16-year-old Joel Suzuki, who has Asperger’s syndrome, as he deals with bullies, school work and fantastic adventures to new worlds. Tashima molded the protagonist after by his son, whose skills, to his dad, are like superpowers.

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courtesy Brian Tashima

“When he was just a toddler, he basically taught himself how to use a computer,” Tashima told The Mighty via email. “He figured out how to do things on it that I didn’t know how to do myself. He could memorize long strings of numbers and solve puzzle games meant for much older children. He was also able to notice tiny details in things that no one else seemed able to see, which ended up being the inspiration for my protagonists’ primary superpower.”

Tashima wrote the draft of the first book in four months and then spent over a year rewriting and revising it before “Secret of the Songshell” came out in July 2012. Book two, “Mystery of the Moonfire,” took about three years and came out in October.

Tashima says his books have so far been received well by the autism community, and he hopes to keep writing them to inspire young adults like his son.
“My main goal with this book series is to give people on the autism spectrum a literary hero they can call their own, someone who can help boost their self-esteem while also providing readers from all walks of life with a fun and entertaining story and raising awareness in the process,” Tashima told The Mighty.
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courtesy Brian Tashima

A portion of the proceeds from book sales go to Autism Empowerment, a Vancouver, Washington-based nonprofit Tashima serves on the Board of Directors for.

h/t Oregon Live

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The 13-Year-Old’s Birthday Party That Has Me Giving Thanks

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Often times we hear about the bullies and the kids making fun of others. Well, this story is different.

You know what is cool? When a group of 13-year-olds embraces your nonverbal son with autism as one of their own. No judgments, no condescending comments, no reservations or hesitation. He is just another kid with them.

Jack was invited to a birthday party for another friend with autism. In attendance at this party was at least another 20 “typical” peers in addition to some other nonverbal friends.

It was magical.

From the moment we arrived, Jack and his autistic peers were just regular kids hanging out and dancing. I was so immensely proud of my community and those “typical” kids for embracing Jack like a regular dude. Kudos to them and their families for teaching acceptance and tolerance and for realizing he is just another kid looking for friends to accept him as is.

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My heart swelled with pride and joy for him. He got to experience a real dance party with friends from school and danced nonstop because people kept dragging him out to the dance floor! We left 20 minutes before the party ended and Jack got very upset. “I’m pissed we left early,” he typed… just like a disgruntled 13-year-old who doesn’t want to leave the party.

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Every Thanksgiving I try to focus on all the wonderful things and people in my life and give thanks. This year, I would add these to my gratitude list.

I am thankful… 

For Acceptance.

For dance parties.

For wine at the dance parties.

For giggles from my boy.

For a supportive community.

For people who don’t suck.

What has you thankful this year?

A version of this originally appeared on Hardly Getting By… 

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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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