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Remember These 3 Words If Someone Stares at You During a Meltdown

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Have you ever been on the receiving end of a rude stare or comment? I can’t tell you how many families I speak to who deal with this issue.

It usually starts like this: You and your child are hanging out in a public place like a grocery store or at the line of a bank when your child suddenly has a meltdown. A stranger then instantly thinks to themselves that your child is having a “tantrum” or they’re a “bad” child who needs to behave themselves.

Then those same strangers may make a comment towards the parent on how they could let their child act the way they do. How they’re a “bad” parent for raising a “bad” child.

Even if there’s no comment, there may people staring either directly or doing double takes at the family and expressing those same feelings with their body language. Others may be whispering to their friends and family about what’s happening.

If you were ever on the receiving end of any of those above scenarios, I want you to remember one thing today: It’s not you.

Whether it’s ignorance or just people being rude, there’s no way of knowing when a situation like this may occur, especially in a public place. My parents had to deal with this when I was growing up with autism. I liked to scream, cry, punch, kick and wail whenever a situation brought me to a place of overload. When those situations occurred, I could remember the eyes pointing in my direction. So many people who don’t have a child with special needs think that other parents should “control” their child when this happens. Sometimes when a meltdown happens, though, the best thing you can do is just be there for your child and wait it out.

Those days hurt but with each one of those stares and comments came moments of pure joy that my family and I have never taken for granted. I learned to roll with the punches like my parents had to during my adolescence.

So, for those reading this, take it from someone who has been on the receiving end of those stares and comments. Don’t judge what you don’t understand.

This post first appeared on KerryMagro.com.

Lead photo source: Thinkstock Images

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When You're the Parent Ordering 'Just a Bun' at McDonald's

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I don’t want to be that customer. I would love to walk into McDonald’s and just order a Happy Meal and be done. Nope, that’s not me.

You see, my son only eats the bun. So my order goes like this: “I would like a bun, just the bun, no meat, no ketchup, mustard, pickles or onions or cheese.” The cashier looks at me confused. “Yes, that’s right, I just want the bun, a plain bun with nothing on it.” The manager usually has to come over and show the cashier how to ring it up. I am happy to pay full price for just the bun. Then the kitchen staff always asks, “They just want a bun?” The cashier, manager and I all say yes.

We have about a 75-percent success rate. I always have to check before I leave the counter or the drive thru because undoubtedly I still get a bun with a hamburger patty or a bun, no meat but with ketchup, mustard, pickles and onions. Occasionally I get a bun with cheese.

As much as I would love to be able to just take the meat off the bun, peel off the cheese or scrape the ketchup and mustard off the bun, I can’t. He would notice. He wouldn’t eat it, and I might lose a food option, and I can’t risk it.

My son, who is 10 years old, is on the autism spectrum. He has anxiety and sensory processing disorder (SPD). The list of foods he won’t eat or even try is long.

No meat, poultry, fish, seafood.

No chicken nuggets.

No cheese of any kind.

No pasta or any kind of noodle or rice.

No pizza.

No vegetables.

My son eats bread products, dry cereal, chips, occasionally yogurt, and a few fruits. He will drink Carnation instant breakfast, and he loves Aunt Annie’s Pretzels.

Even fruit is tricky.  Why do they call it seedless watermelon when it is filled with tiny white seeds? Let me tell you how hard it is to get every last seed out of a slice and not miss one. If I miss one and he either sees it or feels it in his mouth, he is done. Then watermelon is off the menu.

I have had multiple conversations with his pediatrician, therapist, psychiatrist and occupational therapist.  He has been in feeding groups where there are 27 steps to be able to eat a food. It starts with being able to tolerate being in the same room as the food, a few steps to being able to have it on your plate, a few more steps to touch it, then hold to your mouth. Then a few more steps to taking a bite and spitting it out, to finally eating and swallowing the food. Some foods he made it only to step 3, others to step 20. The handful of foods where he made it all the way to step 27 (chewing and swallowing) have come and gone.

My son food jags. He will find a food he can eat and then eat that food for a few weeks, months or if I’m lucky it might last a year.  Then out of nowhere he refuses to eat that food ever again and I’m left desperate to find something he will eat.

Going out to eat can be challenging for us all. The noise, smell and sight of different food can be painful for my son. He doesn’t want to have a meltdown, but sometimes they happen. There have been times I can watch the anxiety come over him. I can see it in his face. He doesn’t want to be difficult. He doesn’t want anyone to notice his discomfort or the fact that he can’t order anything off the menu.

So, if you’re behind me at McDonald’s, I am sorry my order is complicated. I don’t want to be the “high maintenance” customer. I would be ecstatic to be ordering a hamburger or chicken nuggets. I hope there will be a day he can order off the menu. But for now we are still just a plain bun, nothing but the bun.

Image via Thinkstock.

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My Son With Autism Is Worth the Time It Takes to Get to Know Him

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My autistic son was identifying cars as we went down the road today. His obsession with cars leads him to count and name every single car we pass without error – something that impresses me more every day. Suddenly, we pass a new area of development, and he says something, but I can’t understand him.

“A new what?” I ask him.

He answers, but I still don’t catch it.

“A new road? Yeah, it’s pretty new.” I answer, taking my best guess.

“A new neighborhood,” he gets out a bit more clearly this time.

He repeated himself three times without showing signs of frustration.

“I’m sorry I didn’t understand you at first,” I tell him, feeling bad that he had to repeat himself so much. I often get irritated when I have to repeat myself even one time, and he did it three times without getting angry or upset.

“Don’t apologize,” he says to me. I look over at him and see a look of sincerity and understanding I rarely get a chance to glimpse. “It’s not necessary,” he says in one of those rare moments of clarity that tell me  there’s more to him than meets the eye.

This is the child some people find difficult. The child who can be violent when overloaded. He looks at me and tells me he loves me after all of this.

I promise you that children like him – children who get explosive at times when overwhelmed or frustrated – know when you want them there and when you don’t. They know if you’re willing to take the time to at least try to listen and understand, or if you’re not.

Think about that for a minute. It took me seeing his face when he told me not to apologize to realize that, just like any other human being (and maybe even more so), he senses whether the environment he’s in is a positive or negative one. Whether the person he’s with is frustrated with him or feels patience. He senses whether people are glad he’s there or wish he would leave. He may not understand why or the exact feelings, but he senses whether he’s emotionally secure in an environment or not. Which one do you think he will work harder to stay in?

He’s worth the time it takes to get to know him. I promise.

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When I Realized Labels Can Enable My Children With Special Needs

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Many parents are scared of “labels.” So scared, they don’t pursue a diagnosis for their child because of the fear their child will forever be defined by their diagnosis.

I understand this fear. I once shared it too.

There is a reason we did not initially share our daughter’s Asperger’s diagnosis with her, or with too many people around us. We were scared she would be defined by her diagnosis – forever limited by her label. In fact, I once wrote the following:

I am trying to remain positive and focus on what we can do next to help her, but I am worried about “the label.” With our son, the label that came with the autism diagnosis was welcome; it helped us obtain funding and assistance for him that he needed. He clearly has special needs and I have never hidden them from his teachers, friends or family.

My daughter is different. She doesn’t appear to have any special needs, and while a label might help the school obtain extra aide time, a label can also imply certain expectations of function and behavior. I don’t want her to be judged by the fact she has Asperger’s – I want her to be judged on what she can do as an intelligent, funny, affectionate, unique little girl.

She may be known by a different label today, but to me she is still my little girl from yesterday – and I will always love her, just as she is.

I wrote these words nearly exactly 5 years ago. I’m not sure when my thinking changed. But it did. Slowly and irrevocably.

I think a lot of the change came when I fully accepted the diagnosis myself. For a long time I unconsciously thought the diagnosis, and the label that came with it, was indicative that something was wrong with my child. I never said this aloud, and I never even consciously gave it a lot of thought at the time, but looking back, I can see that was my headspace in the early days.

Now I see the spectrum as a wonderful place of clever thinking, innovative ideas, boundless creativity and unique perspectives. There is nothing wrong in any of that. It is just a different way of thinking and viewing the world.

Yes, there are challenges with an autism diagnosis – I live with them every day. However, now I’ve come to accept my children for who they are, the challenges are less daunting. I realize the challenges are tied innately to the way they interact in the world around them, and I can usually do something to help them.

I’ve since come to realize that a diagnosis, and the label that comes with it, should not be viewed in a negative way at all. Instead of defining someone and their abilities, I believe a label actually enables and empowers.

A label provides access to help, support and assistance. Without a diagnosis, people cannot receive funding to help meet the costs of care. They cannot apply for assistance at school. They cannot receive benefits they are rightfully entitled to. A label allows them to access the help and support they need.

A label is the key to understanding and acceptance. A diagnosis and a label can provide answers and promise help. As I’ve described above, the label, even though I feared it, allowed me to fully accept my children’s conditions and understand them better. We have a far better relationship now there is a label to explain their needs and requirements.

A label is a sign of action, representing the first step in moving forward. Seeking a diagnosis and a label is a proactive step, recognizing there are unique difficulties and making a move to address them. Once the diagnosis and label are accepted, it is far easier to move on emotionally and make real progress – believe me.

A label allows people to find their tribe and their community. A diagnosis helps families congregate – to find others in a similar situation. There are support groups, in real life as well as online, which can only be accessed with a diagnosis. A label provides entry to these groups and also represents a common link, bond and connection.

A label can help people take ownership of their condition. Many people come to accept their diagnosis and feel a sense of pride in their label. My kids are proud to be on the spectrum. They relish “being different.” For them, it’s a source of pride and it’s helped develop their self-esteem and self-respect. They know they are different and they are OK with that.

In the end, a label is just a word. A way to categorize similar things. Yes, words are powerful. They can cut, wound and stab just as deep as any weapon. However, words can also be owned. They can be claimed. They can be reformed and remade.

We all have the power to reclaim the meaning of the word “label.” We can change the negative connotations associated with it. We can recognize it for what it is – an enabler.

We can all do our part to change the way labels are seen in the future. We owe it to our kids, our families and our communities to tackle the word head on and not let it stare us down.

We shouldn’t live in fear or avoid a diagnosis and the label that may come with it. We should be doing everything we can to identify our kids’ needs and doing everything possible to address them. Because how can we help them if we don’t know how?

That’s why I truly believe labels don’t define. They enable.

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5 Hidden Things I Deal With as a Person on the Autism Spectrum

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When people look at me, they see a regular person just like them. Many people think I’m just like them when we first meet, but I’m not. There are a lot of things I deal with that the average person doesn’t see.

The first thing I deal with is sensory issues. My eyes are sensitive to bright lights, especially the sun. When I’m outside, I wear a cap because it keeps the sun out of my eyes. My ears are sensitive to sound. Loud noises bother my ears, especially the sound of babies and small children crying. When I’m in a room and there’s a lot of noise, all of the sounds run together. If someone is talking to me and there’s a lot of noise or other people talking, I have a hard time hearing what they’re saying.

The second thing I deal with is not knowing what to say sometimes in a social situation. I can talk on and on about business or sports, but when it comes to other subjects, I’m lost.

A lot of adults enjoy talking about their kids and their mates, but I can’t contribute to their conversations because I don’t have the same experiences. I don’t have kids and have never been involved in an intimate relationship and don’t have an interest in those things.

Some people enjoy talking about other people. They’ll look at someone and assume things about them, but I have a hard time doing those things. I will joke and play around with people, but my only intentions are for fun, not to hurt others. I find it hard to assume things about people because I know how it feels. People pass judgment on me all the time and assume things about me that aren’t true.

The third thing I deal with is developmental delays. I like cartoons, games, toys and hobbies that kids like. I can take care of myself, but the hardest thing for me to deal with is the subject of relationships. I enjoy people, but I see them as just people or as friends. It’s hard for me to deal with the fact that people will find me attractive and have feelings for me. A lot of people are flattered when someone flirts with them, but I find it creepy.

To me, a female is someone who is like a mother, grandmother, sister or an aunt, and a man is someone who is like a father, grandfather, brother or uncle. Males and females are all the same to me. I enjoy their time and companionship and that’s it. No matter how alluring a person might be, I don’t feel attracted by them.

The fourth thing I deal with is inner pain. As a kid I dealt with abuse and neglect in the home. Then I went to school. Sometimes I struggled with school work, and other times I was picked on or rejected by my peers. There were people who thought I was an odd child and people who knew I wasn’t being treated right and didn’t do anything to help me get out of my abusive situation. I would love to erase all of my past memories from my brain, but my autistic brain has stored them in the back of my mind. I can remember everything that happened to me from the time I was 3 years old. Certain events and things I see cause me to relive my past mentally.

The fifth thing I deal with is feelings of emptiness. Growing up in an abusive home, I never got to feel the love, support and closeness most people get to feel. My peers viewed me as being, so I spent a lot of time at school sitting alone.

As an adult, I know a lot more people, locally and online. I appreciate and enjoy all of my friends but they have their own lives to live and their own family support system. I try to keep myself busy, but most of the time, I end up doing things alone because most people I know are too busy to spend time with me. There are times I will go somewhere and see families together or a group of friends having fun, and I get that empty feeling.

When a person has differences, sometimes they just need a support system to be there for them.

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How the Spoon Theory Explains My Energy Levels as Someone on the Autism Spectrum

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When I first became a self-advocate as someone on the autism spectrum, I was introduced to an article called “The Spoon Theory,” written by Christine Miserandino. It explained the concept of one’s personal energy level in terms of a tangible item. Once I understood the idea, I realized that I myself could relate to this concept, and began to share it with others. Friends and family could finally understand why I might have issues at times with finishing a conversation or completing daily tasks. The answer was simple: I was out of spoons.

But just recently, I came to realize a new aspect to the entire theory. It happened when I was watching my friend during her horseback riding lesson. I had taken a lesson once before, but it was so incredibly difficult for me. I didn’t understand why, and was frustrated that I wasn’t able to take the lessons myself. I thought maybe I just wasn’t capable of riding.

Now I know that my capability has nothing to do with it. It’s all about my spoons.

After listening to the instructor constantly telling my friend how to ride the horse, and watching my friend ride, I became exhausted just sitting there on the sidelines. I was using up spoons, and I wasn’t even on a horse! And that’s when I realized: I have multiple kinds of spoons. It’s not just spoons. It’s physical, mental and emotional spoons.

I may be capable of taking a horseback riding class physically, but it would take so many mental spoons to do so that it’s not worth it. And that’s why it’s easier for me to go on a simple trail ride instead. I get to enjoy the riding without having to worry so much about controlling the horse, because the horse already knows the trail.

This revelation has led me to better understand myself in all aspects of life. It explains why there are days I feel physically exhausted but mentally restless, or the other way around. It also explains why when I have a meltdown (which takes a lot of emotional spoons) I am usually unable to function for several hours after.

I think the trick is to learn ways to cope and replenish all of the different kinds of spoons. And what works to replenish my mental spoons (self-stimming) could deplete my physical spoons. So the next step is to find a balance in coping skills. But at least now I can better understand what I’m working with.

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