Teresa's son.

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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When I Try to Help My Son on the Autism Spectrum Understand His Birthday

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birthday candle and balloon Today is your birthday! We are celebrating you! It’s hard to believe you’re turning 5. But to you it’s just like any other day. That’s because abstracts are hard for you to understand. So I buy you a pin that says “Birthday Boy” and hope you will wear it. Maybe it will help make more sense to you that it’s your special day.

We get 12 cupcakes for you and your friends at school, but you’d rather have nothing. That’s what you said when I asked you which ones you would like while we were picking them up at the store. You replied, “Nothing,” which is your way of saying “none.” And while I’m standing there trying to decide which ones you’d like, you’re giggling and laughing at this balloon you’ve got that you snuck off the table at an Operation Christmas Child “packing party” at church. And in the midst of all this fuss of trying to get you to understand your big day, I stop for a moment, seeing your excitement over this balloon. Because right now nothing else matters to you but that big ole red balloon.

young boy playing with a red balloon

And maybe I’m the one who doesn’t understand – who just doesn’t get it. I’m the one who needs to learn that “big moments” aren’t found in trying to make things grand, but in the simple things that make up life. Like an over-sized red balloon that makes funny sounds and flies around the room because you let the air out of it after we’ve blown it up for the one thousandth time. For you, that’s where the “big moments” are found.

Maybe all you need is a little more time – or maybe you’ll never quite understand. But it really doesn’t matter, because you celebrate every day. For you, ordinary things come to life because you’ve discovered the amazing hidden in the simple. And so, while we are trying to teach you that your day is special, you are teaching us that every day is to be celebrated. Because every day is made special by the joys you find in the simple. And every day with you is a gift, not just the day you were born.   

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When a Grocery Store Bagger Made the Wrong Comment About My Son's Autism

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I went to the grocery store this evening. It was one of those trips without a shopping list, so I was walking up and down the aisles of Publix getting things I forgot the first time I went down the aisle. I finally got everything I needed, and of course I picked the line with the coupon issues. My son Brandon made a ton of noise and some of his quirky body movements as we waited our turn. He was happy though, which was all I could ask for in that situation.

As the cashier was ringing me up, the bagger asked Brandon if he would like a sticker. Brandon isn’t able to respond to something like that, so I helped him out. I said, “He would love a sticker.” The bagger looked a little puzzled, so I explained that Brandon has autism and isn’t able to speak well enough to say he would like one, but I knew he would still love one. I then realized the bagger looked puzzled because he was looking for the stickers. He replied, “I’m sorry.” So I said brightly, “Oh, are you out of stickers?” He said, “No, they’re right here.” My face fell as it hit me he was saying sorry my son has autism.

I could have gone off on him. I wanted to. I could have shamed him by saying, “I’m not sorry about my son. Don’t say you’re sorry. My son is fearfully and wonderfully made, and my son is nothing to apologize for.”

But I didn’t.

I just smiled and said thank you for the sticker.

He asked if I would like help out to my car, and I told him I would. He then asked me if my son would be OK with him pushing the cart. It was very thoughtful of him to consider this might upset Brandon. I told him it would be fine and I appreciated him considering that. I started thinking I was kind of glad I didn’t go off on him.

Walking out to the car, this bagger told my son to steer him in the right direction of the car. (We were in one of those kid’s car carts.) As he put everything in my trunk, I started buckling Brandon in his carseat. Brandon was already in the car and couldn’t really see him anymore, but the young man called out, “Bye Brandon!” with a huge grin on his face and his hand waving in the air.

My head darted up in surprise, and I smiled at him as he walked the cart back into the store. My eyes immediately welled up with tears at this awkward goodbye from the grocery store bagger who had just hurt my feelings minutes before.

Consider this: if I had attacked this young man for his “I’m sorry” comment, it is clear it would have crushed him. He would have gone home that night feeling awful and would probably vow to himself to shy away from any other autism families he meets – for nothing could feel worse than upsetting a mother like that, and he wouldn’t want to get publicly shamed again. Many special needs parents get their feelings hurt and are quick to blast someone for a thoughtless comment. (And I am not talking about those cruel people who deliberately say unkind things. Those people are a totally different story – I’ll go off on those folks all day long.) The other thing special needs parents may do is not say anything, then lay awake half the night seething about the comment and what we wish we had said.  

Before you had a child with special needs, did you know the perfect thing to say to a special needs parent? You probably didn’t. To be perfectly honest, I still don’t. I have several friends who have children with special needs, and since children are so different (especially those with autism), I’m sure I have said the wrong things. My closest friends and even my own family have hurt my feelings with comments they have made. We need to have grace with people we come across so we can educate them as best we can in those fleeting moments. This young man at Publix didn’t know what to say. He said the wrong thing, and it’s very likely he had no idea he had done so. Giving him grace in that moment allowed me to see what a kind heart he has and the effort he made to connect with this little boy he just met.

This post originally appeared on RachaelSlough.com.

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