To the Store That No Longer Carries My Picky Eater’s Favorite Snack

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Dear Costco,

When we first met, I have to admit I was entranced. You offered so much and so many things, mostly at a discount, in astonishing sizes.

I could get 12 giant rolls of paper towels at one time, gallons of milk at the least expensive price per ounce I could find and stock up on enough canned goods to last for years.

Sure, I could rarely get out of the store without paying a huge bill, but the overall savings and reduced number of shopping trips made it worth it.

You were also amazing about introducing me to new things. Then you would stop carrying the new things or stop carrying the old things. It would be frustrating and disappointing.

And I have now reached my limit for frustrating and disappointing. The issue: dried seaweed.

A couple of years ago you started carrying dried seaweed. It looked like a healthy snack, so I picked it up and it was delicious.

But even more fantastic was that my son, the Navigator, liked it. He ate it as a snack all the time. I was delighted. As far as snack foods are concerned, seaweed appeared to be an all-around win. Plus, it was pretty much the only green vegetable the Navigator would eat.

Then, one day, the seaweed disappeared. When there is something your picky child on the autism spectrum loves, you really need it to be available. In a mild panic, I searched every corner of the store. Repeated inquiries to employees were for naught. The good-for-him snack food that doubled as a secret vegetable was no longer available.

Then I got irritated. Fine. I would find it somewhere else.

Enter Amazon. I had been exploring the benefits of being a Prime member and discovered its “Subscribe & Save” program where items would be delivered to my doorstep on a regular basis. No shopping trips!

Of course, not everything available on Amazon was less expensive than at Costco, even after taking into account the time and driving. But when I saw I could get seaweed delivered monthly, I signed right up.

That’s right, Costco, you have lost me to Amazon as a seaweed-purchasing customer. Plus, some other things, too. Don’t worry, you will still see me now and then — you still have the lowest price per gallon for milk around. I am just going to spend more time with Amazon, that’s all.

We can still be friends.

Don’t smirk, Home Depot. Remember that kitchen faucet you sold us and then didn’t carry the replacement hose? You’re next.

Follow this journey on Autism Mom.

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 Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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When Christmas Is Both Exciting and Anxiety-Inducing for Your Child

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Christmas was my favorite holiday when I was a child. It was a holiday that touched almost every aspect of our culture, both inside and outside the home, in a way that no other holiday did.

Everywhere I would go and everywhere I looked, things would be changed for Christmas, from holiday music and Christmassy store displays to seasonal crafts we did at school.

We brought a live tree into our home and covered it with lights and bright, pretty things. The house would be full of beautiful things I wasn’t supposed to touch or could break easily. There would be unusual amounts of sweets and desserts to eat almost daily.

Our routine would change, and we might stay out late for a Christmas party or drive around the neighborhood in the dark and see the decorations on the houses.

And, of course, there would be the impending break from school and the anticipation of the gifts on Christmas morning. I loved the Christmas season.

My son gets very excited about Christmas, too, but his excitement isn’t always fun for him.

All the changes that take place during the holiday season that I loved as a child can cause him stress simply because they are changes to his environment and to his routine.

He may love that Christmas is coming but still feels anxiety about the changes.

He loves that a break from school is coming but still feels anxiety about the transition.

He loves seeing the neighborhood light displays but can still feel anxiety about being out in the dark and away from the security of home.

He loves that he will get presents at Christmas but may feel anxiety about not knowing what he will receive. Surprises can be a double-edged sword for him.

Days of excitement and anxiety can have a cumulative effect, leading to his “checking out” — just shutting down to block out sensory input — or meltdowns when his sensory overload point is reached.

Over the years we have developed strategies to help him maximize the fun of the Christmas season and limit the anxiety as much as we can.

I know to limit his exposure to Christmas decor and displays at stores following Thanksgiving. (I hate coming across those stores that start featuring Christmas items before Thanksgiving.)

We have a Christmas season routine we try to keep each year so he knows what to expect — things like cutting down the tree the weekend after Thanksgiving, limiting the sugar he consumes, decorating only certain spaces in the house and keeping him in the loop about seasonal activities.

We include him as he wants to be included and don’t force him to participate if we see signs of overload. He may put five ornaments on the tree and then disappear, and that’s OK with us.

He may ask to see the neighborhood lights, but we don’t force him to go out if he doesn’t want to.

Every parent wants Christmas to be exciting for their child. For us, it is a matter of maintaining a balance of sharing the excitement and helping him feel safe.

Follow this journey on Autism Mom.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental 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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Mom Finds Out Why Son With Autism Wasn’t Afraid of This One Mall Santa

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Santa’s known for being an understanding guy, but we still appreciate when he shows real empathy to the kids who adore him.

Four-year-old Nash Nickerson has been mostly nonverbal until this past August when he began saying a few words. Now, when he sees a Santa, he’ll say, “Santa! Ho, ho, ho!” but his mom, Kristy Nickerson, wasn’t sure if he fully understood what St. Nick was all about. And any Santa in person always scared Nash — until he met the one below.

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Last Wednesday when Nash, who has autism, met a Santa at the Tamarack Centre in Cranbrook, British Columbia, he jumped right on his lap. Nickerson didn’t know what made this Santa different but was just moved to see how the two interacted.

“[Nash] couldn’t answer any of Santa’s questions of what he wants for Christmas,” Kristy Nickerson told The Mighty. “But Santa just kept talking to him in a very hushed tone and was so calm and kind.”

As they left, Santa whispered to Nickerson, “Does he have autism?” When she replied yes, he smiled and said, “So does my grandson.”

“In that moment, I knew why my son was so friendly and willing to just sit with this stranger,” Nickerson said. “I also felt so much relief knowing we weren’t being judged and no one was thinking, ‘What’s wrong with that boy?’ He was simply accepted and seen for who he is… a wonderful little boy.”

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To the Family Waiting in Line for Santa Next to My Special Needs Family

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I’ve seen a lot on the Internet lately about the understanding Santa Claus who played on the floor with a child with autism. I’m sure the little boy’s parents were beyond thankful for what Santa Claus did for their child. As a fellow autism parent, I’m grateful for that outstanding Santa Claus.

I don’t have a story about an understanding Santa, but I do have a story about some understanding people. Yesterday was the first time a stranger help me out in this way. It was the first time that not everyone was staring at me in disgust. I actually had some “angels” nearby who helped me when I needed it the most.

After church on Sunday, I took the boys to see Santa Claus at the mall. I walked hand in hand with my oldest son, Trenton, sweating bullets in anticipation of not knowing how it would go. My parents were walking with my youngest son, Andrew, so my focus was on Trenton.

I was so proud of the way he walked hand in hand in the mall with me right to the Santa Claus line. Unfortunately, we were about 30 seconds late of being able to walk right up to Santa Claus. I just wanted to scream, “No, please stop. Let us go first,” as I watched two other families beat me to the head of the line.

Just as I expected, Trenton was not going to wait. He kept pulling his body away from me, making his upset noises, throwing himself down on the ground, kicking and trying to grab everything in sight. His noises grew louder and louder. I didn’t focus on anyone around me other than Trenton. I took Trenton out of the line while my mother stood in line holding our spot. Within seconds, the people in front of us said that we could go ahead of them. What? Someone actually understands and is not judging me.

“Thank you! Thank you!” I kept saying over and over. Never before in my life did I want to hug and kiss complete strangers.

“Oh thank you. You don’t know how much this means to me. He has severe autism and can’t help it,” I said.

One lady looked at me with empathetic eyes and said, “Trust me, honey. I completely understand.”

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Trenton sat on Santa’s lap, and I did get a picture of the boys with Santa. However, what happened after they sat on Santa’s lap got everyone’s attention in the mall. Trenton wanted the animal the photographer was holding to get the children to look at the camera. We caused a scene. I can’t even begin to describe what happened but it happened. My purse flew off my shoulder and all of the items in it dumped out while I trying to handle Trenton. I ended up having to pick him up and carry him out parallel to the ground with kicking legs and swinging arms. I think everyone could hear his noises, cries and screams bouncing off the walls in the mall. Thank goodness for my mom, who was picking up the pieces after us such as his shoes, toys, etc.

After getting in the van and strapping Trenton into his car seat, he continued to fuss and cry. I couldn’t help but ask myself, “Was that even worth it?”

Well, the answer is yes. Yes, it was worth it. The smile on his face walking into the mall was priceless. It was more than worth it.

To the family who let us go ahead of them, thank you. You will never know how much that meant to me. Your act of kindness and empathy was exactly what I needed. It’s not easy taking a child with a severe hidden disability out in public. For once in my life, we had someone help us and not judge us. Thank you, thank you! You gave me the best Christmas gift I will get this season. I wish I knew who you were and where you lived because I would love to bring you a gift to show you my appreciation.

Follow this journey on Two Brothers, One Journey.

The Mighty is asking the following: Write a letter to a stranger or someone you don’t know well who showed you incredible love 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 Submit a Story page for more about our submission guidelines.

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The Gifts Autism Has Brought Our Family

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He snuggles in closer, smelling of baby shampoo with a hint of something sweet mixed in. His head still fits perfectly on my shoulder, warm and precious as we read “The Polar Express” for the millionth wonderful time. As I begin to turn the page that will lead the protagonist to the train, he puts his hand on mine and says, “Mom, religion doesn’t matter to Santa Claus.  Everyone who’s good should get a gift.”

Amen to that.

I have no doubt the magic of Santa will prevail in the our household, and my boys are both confident they’ve behaved this year and that Santa will reward their efforts. I know this from my son Zachary’s coveted words and, equally definitive, from the priceless nod of my nonverbal son Justin’s head when asked if he’s getting presents this year. The fact that both of my autistic boys can communicate is a gift in and of itself, one I never take for granted.

And yet, if I’m honest, there are so many more gifts autism has brought us.

Ten years ago if someone had mentioned “autism’s gifts” to me, I would have rolled my eyes and probably detailed our daily existence to that individual, an itinerary of Justin’s day replete with insomnia, reflux, aggression, a complete inability to communicate and many other issues related to his disorder. I would definitely have looked heavenward once again seven years ago as we watched our second son Zachary regress, losing his words, his love of life and quite honestly, the very light from his eyes. Gifts were not forefront in my mind when thinking about the impact autism had on our family.

Fear and exhaustion were frankly much more present.

But years later, it turns out that so many of the issues have resolved themselves through hard work, maturity and love. The gifts are here, waiting to be seen, hoping to be discovered. I’ve watched both my children begin their lives’ journeys miserable, tired and seemingly lost in their own worlds where my husband and I could not traverse. Eleven years after that first diagnosis, I’ve seen two confident, loving and happy boys emerge from what seemed like an impenetrable fortress I could not break through to relieve their discomfort.

Of course, the fact that they both now revel in their lives is the biggest gift of all.

There are so many other gifts, however, all priceless in nature, many of which I would have overlooked had autism not been present in our lives.

Autism has made us closer as a family, has created a teamwork mentality I’m not sure we would have embraced otherwise.

Having two autistic children has given me the gift of educating everyone we meet about the disorder, to pave the way for understanding and hopefully make another family’s experience out in the world a bit easier.

Autism has given me the gift of the community as a second family, with whom I feel an instantaneous camaraderie and closeness that I treasure.

I’ve been given the gift of learning to revel in even the smallest increments of the boys’ collective progress.

Finally, autism has given me the gift of forcing me to be utterly present when I’m with my sons, making certain I never miss their ebullient smiles, precious eye contact or generous hugs.

Years ago, when all seemed especially bleak in the landscape of both my sons’ lives, an friend in the autism community told me this: No matter how difficult the moment, the hour or the entire day, at the end of the night find one moment of joy, and cling to it. I took that advice and built on it, finding many moments to be grateful for, enabling me to see that for this family, the gifts of autism outweigh the struggles. My advice to you is to find that instant in time, embrace it and foster it. Help it grow into multiple moments of happiness and peace.

After a decade of strife my sons are safe, productive and happy. They are a gift to the world.

And they will always be a gift to me.

Follow this journey Autism-Mommy Therapist.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness during the holidays. 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 Submit a Story page for more about our submission guidelines.

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The Prayer a Special Needs Mom Says After Her Child Is Bullied

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It’s bedtime in our house. Teeth have been brushed, books have been read and it’s time to turn off the lights and tuck my son, Ben, into bed. Ben prepares to say his nightly prayers. For the past few weeks, his prayers have taken on a new fervor. Tonight is no exception. “God, please help tomorrow be a good day. Please help me be good. And please keep the bucket dippers away,” he pleads.

“Bucket dippers” is his term for the kids at school who dip into his metaphorical bucket. His class read a story called “How Full Is Your Bucket” by Tom Rath. The story talks about filling people’s buckets by doing nice words and deeds, and how doing mean things and saying unkind words dips into someone’s bucket.

Ben encountered a group of older kids, aka the “bucket dippers,” at school during the after-care program. It’s the time in the day when kids from different grade levels mingle in the gymnasium. Due to the loudness of the gym, Ben wears noise-cancelling headsets to help him deal with the sound. On this particular day, they pushed him down and tried to take the headsets. And when he started to cry, they called him a baby.

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When Ben told me what happened, I immediately talked to the teacher and the principal. The adults intervened right away. The boys had consequences. We created safe spaces and new options for Ben in the gym. And, to the best of my knowledge, these “bucket dippers” haven’t physically or verbally bothered Ben in weeks. And yet, every night Ben still prays to God to keep the bucket dippers away.

As a classroom teacher I’ve certainly dealt with situations like this in the past with my own students. I’ve mediated in cases of bullying and have dealt out consequences to the bullies while counseling the victims. And yet, it wasn’t until my own child was on the receiving end that I have realized just how deep the psychological wounds can scar.

I never considered until recently just how much a child, such as mine, who tends to perseverate and focus on something over and over, will relive the hurt and pain again and again to the point where even if the actual bullying has stopped, it is still alive and real in the person’s mind. This is the part of bullying I never considered. I’ve spent lots of time talking to kids about how to handle the actual event, but not nearly enough time thinking about the after-effects. The part where trust is rebuilt. And this was a one-time incident (I think and hope). I can only imagine how bullying impacts the child who deals with this every single day.

The situation with the bucket dippers has opened up many conversations about how Ben can stand up for himself in a strong but respectful way. We read the book “A Bug and a Wish” by Karen Scheuer. The book was recommended by my friend who happens to be a school psychologist. The book talks about telling the bullies what “bugs” you and what you “wish” they’d do instead. We practice saying those words so that if the situation arises again, Ben will be ready. We’ve talked about going to the grown-ups for help when necessary. We’ve talked about walking away. We’ve talked about all of those things, and yet he still worries and he prays.

As I snuggle next to my little boy, I wish I could shield him from this world, a world that isn’t always a friendly and welcoming place and getting scarier and more uncertain by the day. Unfortunately, the road for him is even more challenging because his differences are magnified, both in the way he speaks, the way he reacts to difficult situations and the tools he uses to cope with his world. Even though as a society we preach embracing differences, the hard fact is that many people are scared by differences. People don’t know how to handle different, and so they keep it at an arm’s length or poke fun of it.

I naively hoped my son would be spared from the harshness of bullying. I hoped his differences wouldn’t set him apart and his sweet nature and amazing personality would be enough. 

And so, as I plant a goodnight kiss on his forehead, I say a prayer of my own. I pray for strength to guide him through the days ahead. I pray for the wisdom to know the right words to say to him on those days when his heart feels broken. But, most of all, I pray for a world filled with way too many bucket dippers and not nearly enough kindness.

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Follow this journey on Changed for Good Autism.

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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