young boy at a birthday party

The 'Arrival Anxiety' That Comes With Having Autism

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“Arrival anxiety.” That is what I have always called it. It is, in my mind, the best way to describe it.

It does not matter where we are going or how often we have or haven’t been there — it happens. I see the change in my son’s demeanor immediately. It happens so quickly, like walking though a door; on one side he is happy and the other side he is full of anxiety.

I always dreaded the birthday party invitation when my son, DC, was little. The first half hour, sometimes more, was spent trying to calm him down. No matter how much I tried to prepare him beforehand, he would scream, cry, flap and resort to very loud noises. Everyone stared and the other children would huddle with their parents because they were either afraid, nervous or both. Most of the time, he would eventually calm down, but how I always dreaded our entrance.

After awhile, I realized that the mention of a party meant “cake” to DC. He was expecting cake as soon as he arrived. He didn’t understand why he had to bowl or play games; he was only there for the food. Once I realized this, I just stopped calling these events we had to attend “parties.” We were going bowling or to someone’s house or a picnic. Believe it or not, this helped a great deal with his “birthday arrival anxiety.”

young boy at a party

It still happened, of course, but it was not as severe. Afterwards when we talked about the party and whether he had fun, I would then refer to it as a party in the hopes that he would at some point realize that yes, it was a party, and there was no cake at the door, but he had a good time anyway.

I remember being invited to my friend’s house for her daughter’s graduation party. Again, this was not going to be described as a party; I called it a picnic. We were there for a good while before DC saw one of the tablecloths (a party tablecloth). I saw his eyes widen and he signed “party” with a question on his face as if he were asking “Is THIS a PARTY??” Fortunately by that time, it was time for cake. Eventually he did begin to understand that a party meant more than just cake and our arrivals were not so traumatic.

This “arrival anxiety” continues today; of course, not as bad as when he was younger, but he still has an immediate change in personality, temperament and expression upon arrival to almost anywhere. You might think he is anxious about places he doesn’t want to go, or places he’s never been and yes, those are some factors, but his highest level of anxiety happens when we are going to places he loves to or has been looking forward to going.

Part of this is just anxiety, plain and simple, but as with the earlier birthday issues, a lot of it is about the fact that DC always has an agenda in his head. Whether or not I hear about the agenda over and over again, I know it’s there.

At the times when we are going to places he really loves, like Disney or New York City, I do hear about his agenda for quite awhile before we arrive. He’s excited all the way there and the anxiety kicks in the moment we arrive. His face changes and he begins spewing random words or phrases — “Another one, another one” or “Froggy, froggy, froggy” or whatever the random word of the day might be. He gets himself so wrapped up in his head about what he wants to do and is in such a hurry to do all of it that he just can’t control himself.

Last week we went to New York City for his birthday. We park in the same parking garage every time we’re there because it is pretty much centrally located and walking distance to all of the places he wants to go. Each time, as soon as he gets out of the car, he begins yelling out his random words, clenching his fists and making his loud noises. An observer would really think that he hated being there. He does this all along the route to Times Square or whatever our first stop might be. I was impressed that on our trip that weekend the “arrival anxiety” was quite minimal and he was over it by the time we left the garage. One step forward…

Yesterday afternoon, I told DC that we would be going out to eat for dinner. I never mentioned where and he never asked. When we arrived at a place in town that after 21 years living here we’ve never been before (I was always under the impression that it was a bar until we received a gift certificate for dinner), DC was upset and the whole routine began and continued for an extended period of time — even after he discovered they had all of his favorites on the menu.

We’ve been to new places before – often. But again, I think that when he heard we were going out, he had a few ideas in his head about where we would be going. He often has ideas about where we will be eating, usually more than one. If by chance we do not go to one of the places he had in his head, but it turns out to be a place he knows, there is no problem. Or if I tell him the name of a new place, there is no problem. This was not one of those times. It was not a place in his “mind file”  and it was not an alternate restaurant that he knows he likes but just didn’t think of. It was new.

He did order all of his favorites (all of them) and eventually had a “wonderful time” (DC-speak). I am sure he would be happy to go back again sometime.

Because I neglected to tell him that this was a place he’d never been before (my fault), I will rate last night as only 1/2 a step back. 

This post originally appeared on Taking It a Step at a Time.

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When Our Favorite Restaurant Didn't Have the One Item My Son With Autism Orders

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There’s this fantastic local restaurant in our little town called Loretta’s. My husband Sean and I have been going there for years.

Our boys have joined us there many times. It’s such a yummy, family-friendly place.

And such a TJ-friendly place. Let me explain.

All TJ wants when he goes out to eat anywhere is a burger. Whether they have it on the menu or not. So when they don’t, we’re sometimes faced with the challenge of his anger and trying to contain it.

Loretta’s occasionally has a hamburger on the menu, and they always know just how TJ likes it — plain with no spices in it or anything. And nothing on it. TJ always orders his burger by saying, “Just bun, burger, bun.”

On previous times when I’ve called Loretta’s for a reservation, I’ve asked if the burger was on the menu. Once when it wasn’t, Loretta ran out to buy some ground beef ahead of time so she could make a plain burger just for TJ.

That’s the kind of wonderful lady she is.

Anyway, when I called last night for our reservation, I didn’t ask. We’ve been working on TJ’s flexibility lately, and I wanted him to try to go with the flow and adjust accordingly if there was no burger. I push him often, and yes, it gets messy, but yes, it works in time.

When we sat down and looked at our menu, there was no burger. We agreed that TJ would have plain buttered noodles with salt. When I asked the waitress to make sure there was no parsley or garnish or anything on the plate, she kind of had a double take moment (we didn’t know this waitress). But she smiled and went back to deliver our order.

TJ was upset. I asked him to take a deep breath. He yelled “No!” and I thought for a quick second, that’s it, we are done here. I calmly told him he’s not to yell like that in a restaurant and asked him again to take some deep breaths. He did. He wasn’t happy, but he did. Then his brother, Peter, asked him about a movie he wanted to watch later. TJ calmed down, and we seemed to be in the clear.

Then the waitress came back and said to TJ, “Loretta said she can make some chicken fingers and fries for you if you’d rather. Would you like that?”

Immediately TJ smiled. He almost yelled when he said “Yes! Thank you!” And I said to the waitress, “Please tell Loretta that we love her.”

I think it was the “no parsley no garnish no nothing” request that let Loretta know it was us.

A few minutes later the waitress came back with some chicken wings saying, “Loretta thought you all would like this while you wait for your dinner.”

I was taken back by the generosity and kindness we were experiencing. Blown away and so touched.

A few days ago I was upset by two young girls giggling and staring at TJ in the orthodontist waiting room as he looked at a kids’ animal magazine. And here I was almost brought to tears by the kindness of this restaurant and its people. That’s the kind of yo-yo ride we’re on. That is life.

It reminds me that just when I feel beaten down, along comes someone to reach out to us and help us back up.

Kindness for kindness sake does exist.

It’s a kindness that lasts in our family long after our visit to your lovely restaurant is done.

Thank you, Loretta. Thank you and your wonderful staff for your kindness and caring.

It really does mean the world to us.

two boys at a bowling alley

Editor’s note: This post has been updated since publication to meet our editorial guidelines.

A version of this post originally appeared on I Don’t Have a Job.

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Why I'm Looking for a New Neurologist

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Yesterday was a tough day. We had our six-month review with my daughter, Zoey’s, neurologist (which really ended up being an eight-month review, but OK).

I had to process the entire hour-long visit on the two-hour car ride home. I cried the entire way out of frustration.

The neurologist saw her for one hour. That’s it — one hour. How could he possibly know her progress by only seeing her for one hour and without letting me explain her accomplishments? Zoey has autism, sensory processing disorderglobal development delay and obsessive compulsive disorder. She’s progressed in leaps and bounds over the past eight months, but he didn’t listen and it seemed like he didn’t care. Just because you have an MD after your name does not give you the right to talk right through me, talk over me, rush me out and treat my child like a number from the deli line.

I was told she’s made little progress, and I was questioned about how I work with her. He asked, “Don’t you listen and get instructions from the therapists on how to work with her weekly?” I felt judged as a parent. I showed him the video of her singing and tried to talk to him about all she’s done since he last saw her, and he treated her like a statistic. She is not a statistic. She is a human being, and so am I.

When did human compassion and caring for a patient get exchanged for “… Next!”I felt like he was telling me I wasn’t doing my job as a parent and that my child was nothing more than generic deli meat being passed back to me with, “Come back in six months.”

I will not stand for this. We as parents know our children — we see them every day. Zoey has achieved so much over the past 10 months: she now looks us in the face, she gives hugs, she sings and dances, she wants to be around us, she can eat at the table with us and she can count to seven, among many other things.

There are so many things that she’s doing now that she’s never done before, and it’s incredible. Before, she had stopped speaking entirely. She hid away and was in her own world, and I missed her.

I don’t miss her anymore — I’m getting her back every day. That is progress, and it hasn’t been slow. She will be 3 in five months, and we will then transition her to a developmental pre-Kindergarten program.

So I’m currently looking for a new neurologist. One who cares and who won’t treat her like a statistic, and one who will listen to me and my concerns and answer my questions.

Don’t let anyone treat your child as anything less than amazing.

Melissa's daughter
Melissa’s daughter

Follow this journey on Melissa’s Facebook page.

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What I Want to Say to Anyone Who Tells Me, 'At Least Your Kid Talks'

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“At least your kid talks.”

I hear this a lot. It’s meant to check me into reality that the autism I am familiar with isn’t everyone’s.  I get it, but here’s the thing. (Hey, it’s a blog. You knew the “but” was coming.)

There’s a difference between talking and successfully communicating. Yeah, my kiddo can now say lots of words. Some are even the four-letter variety that he learned from his dear old mom. I kind of wish he didn’t pick those ones up and that’s my own fault for saying them around him. I kind of also wish that he wouldn’t just decide, “Oh I’m just going to say this certain set of words all day. For everything.” It’s like he has thousands of words in his head and only about 20 or so of them actually come out of his mouth on any given day.

Which makes trying to have a conversation with him really freaking hard! Sometimes I ache just to be able to have a conversation with my kiddo that’s not like pulling teeth. The constant redirection. The fishing for answers to the simplest of questions. All the prompting. It grinds a gal down.

I’m not asking for a two-hour talk about the finer points of his day, but to hear, “It was okay” about how school went would be nice. Or even if it sucked. I would love to know that he was really pissed off that day. “Like they served hot dogs when the lunch menu clearly stated it was pizza day.” A legit reason to rant and rave. He can’t do that. He won’t do that. Sometimes I can only just sense he is mad and it’s a great big old guessing game of what’s wrong. When your kiddo screams “TATER TOTS!” again and again for an hour, you start to question why you are sending him to speech therapy to get him to talk in the first place.

mother talking with her son
Photo source: Thinkstock Images

There is the constant need for me to be his translator to everyone we meet when we are out and about. People will ask him a question like his age or where he goes to school and I can just hear his force field shields going up. He’s just staring at them in stunned silence or even better, totally not looking at them at all and suddenly singing “Feliz Navidad.” Then I get the look of either “What’s up with this kid?” or “Oh my god! Your kid is so rude.” Nope, there’s nothing wrong with him. He’s just autistic, blah, blah, blah. And I have to prompt the kiddo to respond.

I’ll admit it. I’m so tired of having to do this. All the freaking time. Sometimes though, we get lucky and he’ll quote some Pixar movie. If we’re hanging with another family from the autism tribe, they usually can quote right back. That’s always cool when it happens, but those moments are usually few and far between.

I wish your kiddo could talk, too. I really do. I don’t wish for anyone to have a nonverbal child. It’s even harder than what I have on my plate. I know you are thinking, What I wouldn’t give for my kid to drop an F-bomb. I would love for that to happen, too! We could sit together and laugh and bitch and moan and be all “OH MY GOD!! Why did he have to say that in Target????” I want you to have that problem, too. Just realize it’s not the perfect problem. It’s just a different one.

I have to wonder how a kiddo can perfectly mimic the voices from a YouTube clip but can’t order a side of fries for himself at the diner. Or when he can say it, it’s done at such a whisper that no one can hear it and they ask again what he wants. He then gets so upset that they didn’t hear him and he got it wrong that he doesn’t say anything at all. I have to wonder how in the world he will manage at all when I am not there to help.

Then there is the fun of telling him “No” to when he does make his needs known. We badger the living daylights out of him to “use his words” and when he finally does, he doesn’t get what he asked for. This has confused him to no end. I feel terrible when this happens because I know it was a struggle for him to get those words out. There I go, telling him “NOPE.” I know this has to do a number on his head.

None of this is easy and no one has it better than you. That’s what I have to try to remember. Everyone has plenty on their plate and it’s not always what they ordered.

This post originally appeared on Autism With a Side of Fries.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, 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.

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When My Daughter's Classmate Said Something About Her That Upset Me

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I want to tell a story about a week whose hours passed anxiously and left me feeling as though I woke up somewhere I had not intended to be.

It began with a couple of statistics I came across a year ago.

A 2012 survey showed that 63 percent of the participating kids with autism spectrum disorder were bullied. One study found that kids with autism are 28 times more likely to attempt suicide.

I wish I could unlearn this. It doesn’t loom, not exactly. It is more like a dark cat that saunters through our weaker moments. A pause, a glance, a reminder. It takes my breath away. But a pause is just that and life resumes its normal speed, and the creature wanders away…

I don’t think about these numbers more than I should, more than any parent in our situation would. I don’t think about them at all when it is bright and sunny and we’ve had a great week at school. But the weather turned cold and dull last Sunday and I knew they would come creeping through. Feelings of distance and uncertainty followed me around the rooms of our house where we were stranded inside, looking out the windows, waiting.

I tried to find my way out with friends, but the air was stifled, I couldn’t connect. It is hard for me to keep up with conversations about home décor and crock pot recipes, when my mind is suspended elsewhere: Who do I need to speak to next, are we out of intake? Has our case manager been assigned? What is the next step, what’s working, what’s not working, the ABA bill was how much this month? I am a rodent on a wheel, spinning in circles, desperate for answers. I know I need this, camaraderie outside the world of special needs. And I remember being there, lost in a Color Book. Can’t I go back? Paint is important. I believe that. Don’t I?

It rained all the way home.

Tuesday was our parent support meeting. The woman that leads the group is the mother of a kind and beautiful 9-year-old girl. This has been a big month for them: Georgia legislators pushed through the bill, named for her daughter, which will require insurance companies in the state to cover autism therapy interventions for preschool age children. They have improved the lives and the futures of no less than 32,000 families. That was last week. This week the same girl was bullied by some kids at her school. Because she has autism and an Instagram account. The sentence purrs and the week moves slowly.

Friday I went to the school to have lunch with my daughter and a nice-enough boy sat next to us and opened his lunchbox. He looked at me and said, “She has to ask the teacher to help her play with people at recess and if they don’t want to play with her she cries. She cries in music, too. She puts her hands over her ears and cries and cries and cries.” And then he turned back to his lunch and went on about his ham and cheese. And the numbers rose out of nowhere, circled my legs, told me to get her out of there, take her home to where it is safe and dry and there’s no one to tally up what behaviors are inadequate, unacceptable.

I should have told him about last year, how much better we are now, how much progress has been made. I should have explained that the music hurts her, like needles in her ears. She told me once it feels like it is squeezing her brain. I should have done sensitivity training with the classroom. Read them a book that explains what a sensory processing disorder is and how a perfectly lovely day can be ruined by escalators or polyester or people singing in unison. I should have bought her those headphones.

I am angry. With the boy and the cat and everything that is easier than this. I called my mother and got a pep talk. Everyone has unshared problems. It is all relative. Keep your chin up.

Saturday: Dog grooming day. The clippers hum brilliantly and the fur falls off in downy clouds. It’s the closest thing I have to a Zen garden. I was covered in hair when I finally stood up an hour later. Our toddler had been playing with the tufts, chasing them as they blew haplessly around on the porch, so I took him upstairs to shower with me. There we were, standing under the water, and he was laughing and laughing and laughing. And I could feel it: the week and the numbers and the words breaking apart into a collection of sounds and shapes that don’t mean anything without knowing what time will make of them. I see my son’s smiling face as he looks up toward the pressure and warmth of the shower. He is perfect, beautiful, happy.

I think: how well we are represented by the person we become when we quietly let go of superstition and the things that keep us separated and hold tightly to what is real and binding. We are more than pieces of life ambling through the weeks in a year; we are parts of a whole. And special needs are more than headphones and tears at recess, they are the landmarks of parenthood, of family, humanity. I pick my little boy up and hold him. The water is hot and wonderful. I could be melting.

I hear my daughters in the room next door, having a very neurotypical conversation about kittens and bracelets and bugs in the yard. The playground is miles away and autism is a small box filled with six letters and the memories we are learning from. I’m wrapping it up for you, our gift, our special needs. I don’t know what they will mean to you but I know they will be entirely relative.

It is important, all of it. Colors worth sharing.

Follow this journey on Betty Sweet Writes.

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Why Overhearing a Mother’s 3 Words to Her Son Made Me Flinch

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After completing our ritual of returning books and examining the library’s fish tank, my son and I headed to the children’s nook. A woman and a boy were already seated in the comfy armchairs, reading. Philip pulled out a car from one of the toy bins. He pushed the car across the cityscape carpet. He didn’t follow the streets, nor did he say “beep” or “vroom.” He hummed and vocalized using his own unique repertoire of sounds. Hearing him engrossed in play, I turned to browse the board books.

“Use your words,” said the other mom. I flinched and glanced over. The woman was pointing to a frog in the picture book her son was holding. She touched the corresponding word. The boy was smaller than my 4-year-old, but appeared close in age. I suddenly felt… anxious? Annoyed? Jealous? Judged?

She probably thinks I should be doing the same with my son.

My son’s noisy play attracted the other boy’s attention. He leaned forward to watch Philip as his mother read until, no longer able to resist, he hopped out of the chair, picked out a car, and tried to play with Philip. Philip remained focused on the car.

The mom patted the chair, and the boy returned to his seat and book. A few moments later, the mother repeated the phrase, “Use your words.” I noticed that she paired a signal with the phrase: her index and middle fingers closed on her thumb, imitating a mouth.

Meanwhile, Philip’s vocalizing was becoming louder as he happily found a different toy to roll across the floor. The little boy got out of his seat once more, came over to Philip, and gestured in has face just as his mom had. “Oose or ords,” he ordered Philip.

Use your words.

I didn’t know whether to laugh or cry. Bless his heart, that little boy understood what his mom wanted and recognized that Philip wasn’t doing it. The mother looked at me, then smiled at her son and said, “Yes, use your words.”

I was tempted to bolt before I burst into tears, but I worried that yanking Philip away would cause a meltdown. Just then the other boy spotted a Curious George hand puppet on the floor. He picked it up and took it to his mom.

“Let’s find a book to go with the puppet,” she said.

As the mother of that monkey’s number one fan and an incurable busybody, I knew exactly where to look.

“Here you go.” I handed her one of Philip’s favorites.

“Thanks. I haven’t been to the library in years,” she said.

“We’re here almost every Saturday,” I explained.

“Does he go to school?” she asked, nodding to Philip.

I named the preschool, an integrated program for both typically developing children and children with disabilities like my non-verbal autistic son.

We discovered that her son is in a class just across the hall. I felt a pang of jealousy. Her son was in a full day classroom. Why didn’t I insist on full-day? I admonished myself. Maybe Philip would be “using his words” by now. 

I stifled my envy and guilt to ask, “Are you going to the PTO event next Saturday night?”

“I saw the signs, but I don’t know what it is,” she said.

I told her what I knew, including the time. I could see her hesitating.

“Well . . ” she began and then explained: she and her son were homeless. They were being sheltered in a network of local churches. The timing of the PTO event conflicted with the scheduled meal time.

“My son’s not developmentally delayed, I  just didn’t provide him with the environment he needed,” she confessed. She also confided that, in addition to being homeless, she is disabled. Suddenly, I realized that “Use your words” wasn’t a dig at me. It wasn’t about me at all.

I was no longer indignant or jealous. Here was a child that really needed to be in preschool all day, every day, not just for instruction, but for breakfast and lunch. Here was a mother, having been told the importance of reading to her child, had brought her son to the library. Here was a mother doing the best she could for her child under very trying circumstances. Here was a mother who opened up to another mom she thought would understand her and who, it turned out, needed to be understood, too.

Without using his words, Philip let me know he was ready to go.

“Maybe we’ll see you next Saturday,” I said before we left.

“Maybe. Thanks for your help,” she said.

No, thank you, I thought, but I didn’t use my words.

This post originally appeared on That Cynking Feeling.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability 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.

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