April is Autism Awareness Month: What I'm Doing to Spread Awareness

Let me begin by saying that in honor of Autism Awareness Month, I have decided that for 30 days I will post something new and educational about Autism on my Facebook page. Today my post was as follows:

Day One-Autism Awareness and Education: Echolalia as defined by Dictionary.com: 1. *Psychiatry*: the uncontrollable and immediate repetition of words spoken by another person. 2. the imitation by a baby of the vocal sounds produced by others, occurring as a natural phase of childhood development.

This definition is very misleading because it says the "immediate repetition." The repetition does not have to be immediate. The repetition can be months in the future or even years. It can be several hours later or happen right at that moment. This also suggests that this phenomenon is "uncontrollable." While this is true some of the time, it is not true all of the time. Sometimes, the repetition is actually used as part of effective communication, however what is "uncontrollable" about it is the ability to stop repeating the word or phrase once it's been said the first time. 

Another reason this definition is misleading is because of the second part, "the imitation by a baby." The imitation of sounds that a baby makes when first learning to speak is nothing like true Echolalia. The reason for this is that a baby is learning effective ways to communicate. Someone who experiences Echolalia isn't always trying to effectively communicate or sometimes they are and they just can't get the right words to come out in the right order, so almost like a robot, they mimic those words. A baby who is mimicking the sounds of those around them will use them to eventually create full sentences, even if those sentences are only three words long. Someone who experiences Echolalia may never speak a full sentence or if they do, it might be a sentence that they heard somewhere else. *I've often been told that my son's Echolalia is good because eventually he will start having real conversations with me. I don't like to be told that because it's not true. He may never have a real conversation with me and telling me that it's good that he has Autism and that he has so much trouble finding his voice doesn't help. Now, if you'd like to aid in helping him find his voice by listening when he does speak, please be my guest. I always love it when someone is willing to help him as I do.

Here are some examples of Echolalia that I've heard my own son use:
"Only at Walmart." (He might say this if he wants to go to the store).
"TBS. Very Funny." (He might say this if he thinks something is funny).
"WGN America (Amerkicka)." (He used to say this when he saw an American flag at his school, but hasn't said it in a long time).

There are plenty more that we hear and sometimes they come directly from songs, but I often wonder what exactly is my son thinking when he experiences Echolalia because while he does repeat these phrases, he usually repeats them exactly as he's heard them and over and over several times.

End of Post.

I have decided to put this post here to further spread Autism Awareness. My goal for Light It Up Blue is to wear blue tomorrow and spread Autism Awareness by educating the public about different aspects of Autism. Along with this I have begun a journey to help people like my own son who are considered non-verbal to find their voice using American Sign Language.

How am I helping non-verbal Autistic people find their voice?

The first step in this journey has been to learn American Sign Language. Those who read my blog know that I am a part time instructor of composition. As a result, I am not entitled to any benefits, however, just this past August, my husband was hired for a full time position at the university where we both work. He is now a full time online instructor of composition, which includes teaching a technical writing class in the spring semesters. This benefits our family greatly because since I am married to a full time employee, that means that I have access to health insurance as well as being able to take tuition free classes. I do this by filling out a form that my husband must sign that transfers his tuition free courses to his spouse or dependent. It's a really sweet deal and saves us a lot of money as I have begun this journey.

This semester I am teaching two English 102 classes (the focus is on writing argumentative research papers). However, I am also taking ASL 101, which covers the first four units of the book Signing Naturally. It's been an interesting experience and as I've learned more sign language, I have been using it more with my son and his language has increased. Not only am I learning quite a bit about how to effectively use ASL with my son, I am also learning about Deaf culture and history. As a result, I have also learned about the history of the Americans with Disabilities Act (ADA), but more on that later.

The next step that I will be taking begins this summer. I will be taking ASL 102 in July, of course, but I will also be taking a psychology course titled "The Autism Spectrum." It's actually a senior/graduate level course for students of psychology, but I was given special permission to take it over the summer (June and July). During this class, I will have to do a research project and my intention is to follow this track and conduct some research on how ASL helps non-verbal Autistic children and increases verbalizations in non-verbal children.

This is what I've been working on and why I haven't been much of an online presence lately, but I hope that this month proves to be truly educational for my audience (friends, family, complete strangers who are interested) as well as myself.

I am also attempting to raise money to get my son a service dog because my son often "wanders" or inappropriately runs from his caretakers in public places. This is a dangerous behavior and one that is increasingly harder to control as he outgrows his own mother. Therefore, I have set up a First Giving page where anyone who wishes can donate to our cause. This dog will be trained in tethering (so that Thatcher can't run from us), tracking (so that if Thatcher should run, the dog would be able to find him), and behavior interruptions (to keep Thatcher from wanting to run in the first place). Your donation, no matter how small is greatly appreciated and every dollar counts toward our goal.

http://www.firstgiving.com/fundraiser/JoGrayson/thegraysonsfundraisefor4paws 

Why Hugs Aren't Free (for my son and me at least)

Today has been as busy as many days in my life. This morning, we took Thatcher to the dentist. He was not happy about this. We brushed his teeth ahead of time as we always do and he was not happy about it. He didn't want to open his mouth or let the brush vibrate on his teeth. Obviously, it's a sonic tooth brush and normally, he enjoys the feeling of it on his teeth and tongue, but not recently, partly because he has four loose teeth. The last time we cut his finger nails, he acted like we were torturing him and to him, it might have felt like torture, especially when his dad accidentally nipped him a little with the nail clippers. Most of the time, he's happy when he freely gives hugs, but he will push away if he doesn't want a hug or doesn't feel socially obligated to give a hug.

I can relate. I have never liked hugs. They've always felt awkward to me. I'm perfectly happy chatting with friends and family without the obligation of touch. It's not that I don't enjoy another person's company because I genuinely do enjoy the company of my family and friends. I just don't want to hug you. I don't want you to put your arms around me and squeeze up against me. Quite frankly, you are too far into my space bubble for comfort and inside I am screaming, "When will this embrace end?!" And when the embrace finally ends, I feel an enormous sense of relief. Friends and family alike have suggested that perhaps I, too, might have some Autistic characteristics. This would not surprise me because despite having a master's degree in my field and being completely satisfied with my job, I am about to embark on a new scholastic journey by getting a second bachelor's degree, even though it seems crazy to go through the stress of college all over again, especially while also teaching my own peers. I have intentions of learning sign language so that I can use it with my nonverbal son and teach others how to use it with their own nonverbal Autistic child for a minimal (cost of the textbook) fee. This is my way to give back to the community and help those in the ASD population. This is what I do for fun. I learn new things and take in as much of my environment as possible since I didn't acquire as much knowledge as I would have liked when I was younger. I wasn't delayed in the way that my son is delayed, but despite having a very low reading speed, due to undiagnosed dyslexia and an inability to hold my attention for significant periods of time, I have managed to obtain a BA in English and an MFA in creative writing and trust me, there was a lot of reading involved and I'd rather be reading than hugging you.

Thatcher, on the other hand, will hug you. He might even enjoy hugging you sometimes. This is where he and I differ on how much we crave human touch. I love hugging my son back, too. And I love hugging my husband. I feel comfortable and safe when I hug them and only them. I have come to the conclusion that this must be because I chose to be intimately close to my husband and my son lived in my belly for nine months. Their scents are familiar and not odd to me in any way. This is not the case when I hug other people. Perhaps it's because I pushed my mother away so often when she attempted to hug me. I'm not sure, but she has stated numerous times that I was never fond of hugs or cuddles, even as a baby. This is how I can relate to those "on the spectrum."

I'd also rather not shake your hand. There are so many reasons why in this case that are more easily explained than my lack of love for hugs. When someone reaches toward me for a handshake, I am going through 100 different scenarios at once.Will this person's palms be sweaty? Will their hand be too cold or too warm? Will they squeeze my hand to the point of it hurting? Will they barely touch my hand at all, curling away as if they've touched something repulsive? Did this person wash their hands after their last trip to the bathroom? What did this person touch right before they touched me? Was it a surface full of germs? If so, will I catch something and if so, how long will it take me to recover? I don't have time to get sick unless it's during winter or summer break. Otherwise, I'm going to have to suck it up and hope it goes away quickly because I have stuff to do.

Clearly, these thoughts are overwhelming, but I politely hold my hand out and give them a firm, but gentle shake. I'm going to sanitize my hands when they are no longer within my view, most especially so if they coughed, sneezed, or even mentioned that they've been sick. I often wonder if this is how the Autistic mind works. I am able to reach out my hand, but even so, if the shake is awkward and I think that the person won't be too offended, I will comment on their grip, especially if it is too much and I felt like they were trying to crush all of the bones in my hand. Then I also wonder if everyone has these anxieties about shaking hands.

And hugs. Does everyone have anxiety about giving someone a simple hug? I say simple, but now that you've done some reading, "hug" probably doesn't seem like such a simple word anymore. Every night, I tuck my son into bed and I ask him for a kiss on my cheek. Sometimes he willingly gives me at least one kiss. Other times he gives me multiple kisses. And some nights he flat out refuses to kiss anyone. This is okay with me. Kissing someone on the cheek is weird, even if it is your mom and you are seven. We actively don't ask for bedtime cheek kisses at all when someone in the house is sick. We'd just be spreading around the germs and we are all too busy with teaching, going to school, therapy appointments, and out-of-town family visits to get sick or at least stay sick for too long.

So please forgive us for not giving you a hug, especially if we saw you a few days ago, or last month. It's not that we don't enjoy your company. We honestly do enjoy the company of our loved ones. It's just that someone touching us can evoke enormous anxiety. Sure, I will give you a pass if I haven't seen you in a long time and Thatcher will give you a pass on his own terms, but we truly have to be in the right frame of mind to want to hug or touch another person, regardless of how close we are or how well we know you. Our awkwardness in freely giving hugs is our burden to carry and we wear it proudly, so long as those around us understand that it's not that we don't want to hug you and get the same feeling you have, which I assume is warmth, love, and a sense or safety, but that our genetics dictates that we will never feel the same about hugs as you do.

That being said, if you find someone like us who will give you hugs freely, you are truly blessed because inside we are still anxious. We still feel awkward, but we will still try our best to make you feel happy and give you a hug despite our anxiety, so when you are lucky enough to get a hug from Thatcher or me, you should feel blessed because for us, that hug wasn't free.