The Last Fundraiser!

Way back in September of 2014, I began a the journey to get my son a service dog. Of course, the journey really began before that with the decision to begin the process of getting a service dog for Thatcher. As you all know, Thatcher has Autism, which comes with sensory processing disorder and a tendency to wander away from caretakers and into danger. While a GPS tracking device could help if Thatcher should escape, it isn't as accurate as a dog's sniffer and it also isn't a preventative measure. So, now it's been almost three years since I sent in Thatcher's application packet and now we are on our last fundraiser!!! This last one is specifically for travel expenses and any additional funds that we receive will go toward initial dog expenses. The last fundraiser ends on August 20, 2017 (just 4 days from now) and we will be going to Xenia, Ohio for a two week training class in November of this year!

Here is the link for the Thirty One Fundraiser if you'd like to make a purchase:

https://www.mythirtyone.com/1936767/shop/Party/EventDetail/10103759

Why No Updates?

Greetings Followers,

I am sure that you have noticed that I just haven't posted nearly as often. A lot has happened in the last couple of years that have prevented me from devoting any attention to my blog. First, there was "the big move." Not a physical move, but a virtual one. I had considered moving this blog to another platform and tried my best to move posts to either Tumblr or WordPress. It turns out, however, that I am pretty partial to Blogger and have been with them for a long time. Then, there were new diagnoses. Thatcher has now been diagnosed with Epilepsy and Celiac. More on those conditions later. And then there was the fight with the school over Thatcher breaking his arm and the school not notifying his parents or filing an incident report of any kind, despite him obviously falling at school. More on that later, too. And then there was the loss of my job. I was teaching and I loved it, but because of budget cuts and a not so wonderful governor, I am no longer teaching, despite wanting to. I am working and the people that I work with are nice, but the job is definitely not a career path for me. And so, life has been crazy recently. We have spent hours, days, even in hospitals just looking for answers and taking care of Thatcher's needs and are finally close to knowing exactly what to do for our son and getting some much needed answers. I have also spent a great deal of time fundraising for him to have his very own Autism Assistance Service Dog and have spent the last two years (maybe a bit more) fundraising for this cause. I was also given a position on the board of my local Autism Society chapter and life has been so crazy that I haven't even had much time for Facebook, if you can imagine that! But here I am, back at it, typing away on the blog and will have to make sure to come back for regular updates much more often. I hope you all haven't forgotten me and understand the crazy life that is parenting a special need's child and I hope that this blog helps other parents understand that they are not alone. You are not alone. We are all in this together and I see you, with your puzzle piece license plate, you struggling to make your kid stay next to you in the store, the fear on your face when your child tries to bolt from the door. I have been there. I know your fear, your pain, your worry, and your joy when your child finally says, "I love you." I salute all of you parents who make this work every day. You all are my heroes.

Thatcher is Getting a Service Dog!!!

Yes, I realize that I haven't posted in a long time and a lot has happened since the last time I posted. I will post the whole story later today, but in the meantime, here is just a tiny bit of information. Thatcher is getting an Autism Assistance Service Dog from 4 Paws for Ability and we are so close to class that it is actually time for a timer!!!

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.

On Stimming and Autism

If you you have a child "on the spectrum" then you have probably heard of "stimming" and if you've heard of "stimming" you've probably also heard of "quiet hands." First, you should know what stimming is. For someone who is "typical" the best way to understand the concept is to think of when you twirl your hair, tap your pencil, bounce your leg rapidly, etc. We associate these types of behavior with being nervous and do them to calm ourselves down and help us focus. For someone who has Autism, this type of behavior is intensified and pretty easily identified. Some people with Autism stim in several different ways, i.e. spinning, twirling, flapping hands, pacing, running back and forth, jumping up and down in a single area. All of these are done for long periods of time, meaning much longer than a "typical" person would twirl their hair, bounce their leg, etc. My son, for example, spends about 75% of his day jumping or engaged in some other type of stimming behavior. Here is an example of a stimming behavior:

When this video was taken, my son had not yet been diagnosed with Autism. I had no idea why he was behaving this way. I had never heard of "stimming." A little over a year after this video was taken, he was diagnosed with Autism. Here is one more example of a stimming behavior:

This is actually a good example of two types of stimming behavior (jumping and pacing/running back and forth). And just for good measure, here is one more example of a stimming behavior:

So, now that you know a what "stimming" actually looks like, let's get to the true purpose of this post. So today, while scrolling through my Facebook news feed, I found a post from the Autism Society of America. The post was a link to another writer's blog post entitled, "10 Things Every Teacher Should Know About Autism" by their guest blogger Ron Sandison.

Here is a link: 10 Things Every Teacher Should Know About Autism


Let me save you some time. The article is good, except for a couple of questionable "opinions." Here is the "opinion" that bothers me the most:

"Children with autism may display stimming behavior. When you bite your nails, tap your pencil, or twirl your hair, you are engaging in the behavior pattern called stimming. This behavior with children of autism can include flapping their hands up-and-down, pacing in circles, rocking back-and-forth, or spinning their whole body. Autistic stimming can be a hindrance by prohibiting the child from interacting with peers" (#6).

The problem with this can easily be cleared up with this response from a "random" Facebook commenter named Michael Rock. His comment was as follows:

"Stimming is not a hindrance. It is a necessary comforting tool for many people with autism. Telling an autistic person to not stim is like telling a blind person not to use a cane or a deaf person not to use sign language."

I have read numerous articles on all sides of the debate about stimming behavior, but you know what I've found? It doesn't matter what articles say should or should not be done when speaking about stimming. What matters the most is what my son needs. My son uses stimming as a method for interacting with a world where he has little to no voice. This is why we don't dare use "quiet hands" as a method to stop him. If I stop him from stimming, for him, it's like I've stopped him from breathing. He doesn't stop stimming because I tell him to stop or because I physically stop him. (I actually don't do that unless I absolutely have to because it's not good for him). Each time that I have felt the need to stop him from stimming, i.e. the neighbors who live below us complain about his jumping, I am faced with a never ending battle. Why? Because he needs to stim. I agree wholeheartedly with Mr. Rock because I have seen my son. He's happy when he's jumping. He's content playing in the salt. The alternative is for him to attempt to run away or "wander" from his caretakers or have a complete meltdown because he's being over or under stimulated and can't interact with the world around him in a way that is comfortable for him.

Perhaps you have met someone who is completely annoyed by stimming behaviors. These people don't understand Autism. Consider this: What if everything around you was way too loud and you could hear everything, but you couldn't tune it out? Would this bother you? This is what it's like for someone with Autism. They deal with this issue by stimming. If you couldn't hear, you would find a way to communicate. If you couldn't see, you would find a way to get around. This is the same concept for people who have Autism and stim, so instead of judging and complaining to your neighbors because their child is "different" in a way that you don't understand, perhaps educating yourself would be more productive. Currently the CDC says that 1 in 68 children have an Autism Spectrum Disorder. That is a very high number and it baffles me that more people aren't educated as a result, but that's the fact, so the best way to combat discrimination like this: Autism Speaks Letter on the Reginald Latson Case is to educate ourselves and everyone around us.

7 Things to Say to Parents of Children with Special Needs

I originally wrote this as a note on Facebook, which not everyone could see, but I think this is appropriate after seeing a post on Facebook from The Autism Society of America which asked, "What do you wish people WOULD say?" linking the following article: http://www.washingtonpost.com/news/parenting/wp/2014/09/15/4-things-parents-of-kids-with-special-needs-wish-you-wouldnt-say/

This in response to a note that has been shared numerous times, first posted by Special Needs Parent Association titled, "7 Things Not to Say to Parents of Kids With Special Needs."

1. "Aw, your child is so cute." This was also on the list of what not to say, but only because it was more specific. For example, "Your child is so cute when he tries to talk." Parents of special needs children are a lot like any other parent. We want to be told that our child is cute. We do not, however, want to hear that it is cute when our child struggles. I mean, is it cute when your child struggles? Or just a bit frustrating? So, when you say, "Your child is cute," leave it at that. No need for further explanation.

 He is pretty cute, though, right?

2. As a parent of a child with special needs, I often find myself telling someone my child's diagnosis before they ask because my child can't talk to them (He has Autism), so the minute I reveal his diagnosis, feel free to ask, "What is Autism? What does that mean for him? Is their a cure?," etc. I definitely want to answer your questions and want you to be informed.

3. "So, how old is your child?" This is question that you would ask any parent of a "typical" child and is completely and totally welcome. We want you to be interested in our children, especially with questions that you'd ask your friends/relatives/strangers who have "typical" children.

4. "Your child is an inspiration." I think that parents of children with special needs don't hear this one often enough. Our children do have to overcome obstacles that "typical" children grasp easily and/or at a much earlier age, so it's nice to hear that our children inspire you to be a better person and to try harder and not to take your abilities for granted.

This is one of Thatcher's most recent works of art, and quite frankly, it is inspiring. 

5. "Hey, have you ever heard of this program called "*Something that could potentially help your child*"? This is a great one because as parents of children with special needs, we are always looking for resources of which we were not already aware. But be aware, that this is only okay if you are not giving me medical advice (unless you are a medical professional) and are not trying to pressure me into trying something that most likely will not be useful in my child's case. For instance, I'd never heard of a program in my state that is for early intervention before the age of 3, but was glad when a relative told me about it, even though it was a bit too late for my son. I was, however, able to pass this information along to other parents of children with special needs.

6. "Is there anything I can do to help?" This is one that I've heard numerous parents of children with special needs say they'd like to hear, but have never actually heard it myself. I know that my friends and relatives are concerned and they try their best to help, but I've never actually been asked, specifically, what a person can do to help. I've thanked my friends and relatives for all the help they do provide, but feel odd asking for help (even if I desperately need it at some points) without being asked if there is something to do. Why? Because if you don't ask me, I feel like I'm burdening you, even if I'm not and it's truly something you want to and would be willing to do. Perhaps, instead of giving people like me a lecture on us being too emotional about what you say to us, you should pay attention, especially if you are close to me, to when I seem like I'm under extreme pressure and offer to baby-sit, visit, go out to lunch, etc. Offer to do something that will ease the tension of my workload because lets face it, as the parent of a child with a special need I'm extremely busy and worrisome a lot of the time and could definitely use a pick-me-up and a good friend to discuss my concerns and/or vent to about the issues and challenges that my child and I face.

7. And last on my list, but certainly not least, "Hello. How are you?" And "I'm here to listen." Many parents of children with special needs feel isolated. I know that you might be uncomfortable with the things my child is doing, but if we were friends before my son's diagnosis/birth, I still want you to be my friend. I want you to want to understand and want to spend time with my family and me. Now, I will say that I've never had an issue with a friend avoiding me because of my own child, but I have to say, this happens to other people far too often. If you want to understand what we are going through, just ask. Don't avoid us because you are afraid of hurting our feelings because, even if you do accidentally hurt our feelings, we will probably tell you. You will probably learn in the process if you keep an open mind and listen to our concerns.

Disclaimer: In order to write this note, I used a previous note posted by Special Needs Parent Association, mentioned at the beginning of this note as well as the website: http://parentingsquad.com/what-to-say-to-parents-of-children-with-special-needs, but the majority of what is written in this list comes solely from my own personal experiences. Feel free to add to this list of Things To Say as well as share this note.