Tag Archives: #AutismAwarenessMonth

Wrapping it up

So, we’ve reached the end of Autism Awareness Month-or what I have unofficially renamed ‘Autism Acceptance Month’. To refresh on issues I addressed: ‘Acceptance’ is tough to describe, but what we have to remember is it takes actual work. I lightly introduced Identity First Language (Autistic person vs. Person with Autism); I boasted that I really like public speaking, just kidding, I feel a need to speak in schools where learning happens and that leads to changes; I endeavored to show ‘How to be a Teenager’ in Ryan’s terms. i.e. try not to focus on how you look or what people think about you; Having a sibling has been the greatest gift Ryan could ever have-and the same goes for his sister; The New R-word needs to be extinguished before it gains more momentum; And lastly and having a community that accepts you is priceless.

Did I get to all the issues I wanted to approach this month? No-not even close. But that’s okay. That’s why I have this blog. And I’m not going anywhere.

My goal was to broaden minds and attempt to turn awareness into acceptance. I don’t know if my posts made any real changes in the world. But I know I amended my own mind. I reinforced things I had forgotten, took a fresh look at the world and understood now more than ever we have a lot of work to do. Thank

So, where to do we go from here? We keep talking. We keep learning. We keep our minds and our hearts open. Change will come if we try treat every individual (whether on the spectrum or not) as people who deserve whatever happiness they choose to pursue. We need to look for ways to accept that we are all part of big world where everyone has a place and a purpose. Everyone has a gift to offer the world, let’s give each other the mere chance to try.

I’ll be back soon with more ‘looking forward’.

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Sibling Gifts

“I don’t know who is the bigger gift to each other.”

I uttered those words through tear stained cheeks to a crowd of strangers after the first reading of my book. I didn’t expect to get so emotional, but I should have know I would. My children simply move me; especially in relation to each other.

My oldest child, Jenna has loved Ryan for the Ryan he is, from the beginning. She endured his countless tantrums that were often aimed at her, and still tried to play with him moments later. She pushed day in and day out to make him engage in anything with her.

I recall watching them one day not long after his diagnosis. He was maneuvering around his train table and she was trying to do what he did. I’m assuming just to be with him. He tolerated it, I think, because it was her. He gave a few squeals when she touched something she shouldn’t, but this interaction went on far longer than I had seen or expected.

I remember thinking then: he loves her. Which sounded strange; of course he loved her, it’s his sister. But Ryan didn’t have language then and I had to guess a lot of what he was thinking or feeling.  It wasn’t just because he was allowing her to touch his trains, it was his body language towards her. She stood very close to him and he tolerated it. She reached out and wrapped her arms around his neck in a tight embrace and he didn’t push her away, well not immediately. Jenna picked up a forgotten train, handed it to him and he would actually look at what she had in her hand and at her. What his therapists would have given to see a natural interaction like that.

There are very few people in the world who Ryan likes in his life and Jenna is the top of the list. For many years after he could talk, his first question was “Where’s Jenna?” And to this day, he has to know where she is at all times. I can say the converse is true too. Jenna prefers his company to most people. They just have an ease about them that is uncanny. Not only is that unusual for someone with autism its unusual for any siblings (no offense to my siblings).  Of course Jenna and Ryan have their moments when they annoy each other, but I have to say, it’s rare.

Is this because Jenna is an incredibly caring, patient person? Sure that has a lot to do with it. But I believe she just never saw him as different. She has the remarkable ability to look at him for Ryan, not his diagnosis. Jenna has taught Ryan unconditional love (from someone other than his parents) and the best part is he accepted it. He has always allowed her to love him.

So, who is the bigger gift to each other? I believe the equation is balanced; they are both equally blessed. Perhaps they get different things from their relationship, but the scale is even. And their lives have been irrevocably changed due to the other. (Yup, mom tears again…)

I truly believe siblings like Jenna, are going to be the leaders in acceptance. They are going to be the ones who change perspectives on autism and other disorders. They are going to be the wave of new thinking and change our world needs. Because her mind set comes from a pure heart, and how can you inspire change if you don’t start there? If she isn’t the example needed, I don’t know what is.

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How To Be A Teenager

The diagnosis of Autism assumed many things my son may not ever be able to do. I felt such a loss when that word was first spoken to me of what the disorder may take away from Ryan emotionally and socially. However, one thing my son has always done is look at me and “speak” to me on another level. As if he’s always tried to tell me, for a long time without words, he would be okay. And one thing I know: he is okay and handling things better than I ever foresaw. Turns out what is perceived as social deficits in this disorder are actually positives in the minefield of at least one frightening area that I have been fearing for years: adolescence.

As Ryan is now a teenager, and I see his friends delving into that murky pool of puberty, I feel more confident about how autism will actually help him navigate the maze.  A few of the multitudes of issues teens juggle with: dating, drugs, peer acceptance, popularity and social media, are for now, working well for him with his traits on the spectrum.

The two teenage aliments, in my mind, that can be taken quickly off the table for Ryan are dating and drugs. I’m pretty confident drugs won’t be an issue for Ryan for a long time. I can barely get him to eat a different type of potato chip, so having someone offer him drugs is almost laughable. He will not ingest anything foreign without complete nuclear force.  The other I’m quick to dismiss is the opposite sex. Not that he won’t experience the desire to take a girl out someday, but right now he isn’t panting around after the girls. Don’t’ get me wrong, he doesn’t hesitate to turn his head at a pretty girl, but the issue of impressing a girl is thankfully, currently off his radar.

Possibly the biggest teenage gift bestowed upon Ryan is he doesn’t care about who is popular or if he fits in. He simply knows who his friends are and that’s enough. Ryan is not self-conscious of his looks or his clothes. What a gift to be innocent of the perception others may have of you, at any age, but especially at this critical time in emotional development. Ryan does know when someone may be mad at him, but he doesn’t worry too long about it.  Where most teenagers would fret for days that a peer was mad and turning people against them.

Not being aware of what others think is also a blessing as he has no interest in social media. He has been the subject of many filtered Snapchats with his sister, but he doesn’t have the burning desire most teenagers do to get their own Twitter or Instagram accounts. While I’m happy to not police him on multiple sites, as I do his sister, I wonder, by not being on social media, is he missing out on his peer’s interactions? This I don’t know, and am okay being grey with for now. I like that he is not being obsessed with how many likes or views, or re-tweets his post received. In a society so dependent on pairing social media to self worth, I’m truly glad he isn’t interested.

Ryan’s ‘devil may care’ attitude about his actions is most apparent in his own form of “stimming”. Ryan scripts or what we call ‘movie talks’ incessantly. When it’s not driving me crazy, and I can appreciate his art, I realize he is quite good at it. He can throw a line from a show at the most appropriate time you don’t even realize he’s quoting a TV show. Case in point: arriving at a store a few weeks ago, a lady walks out carrying a small dog. Ryan promptly and quite loudly, points to the sign on the door “Did you miss the sig? No dogs allowed”. Then he giggles incessantly. The lady was not pleased, but I was, a little. I knew it was from a TV show (“Uncle Grandpa”) but she didn’t. I’m sure she thought he was being a typical, rude teenager. And I liked that thought for a moment too; the typical part anyway. The bottom line is, I’m glad he has no concept that people may look at him when he scripts. I’m glad he’s found a way to bring the outside world into his. If you could see how much joy it brings him, acting out a scene in what I am sure is full HD quality in his mind, you would smile too.

As much as I want him to “fit in” to society, I also love his vigor for saying what is in his head–albeit maybe forty times in row. I adore the fact he has no desire to fit in or be cool and because of that he naturally is cool. Kids are attracted to him because he has a stand-off Arthur Fonzarelli-ness about him–his collar up and all.

Being diagnosed with autism may have foreseen some social issues for Ryan, but as far as I can tell, he’s better off not having some typical teenager feelings, at least during puberty. I think a lot of the worrying I did was for not, he seems to have it all in check and isn’t sweating it. I wish more teenagers could feel the way he seems to: just be who you are and don’t fret about what people think. If more teenagers felt the overwhelming need to act out the dance scene from “Puss and Boots”, while walking the isles at Costco, we all might smile a little more.

 

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Back To School

Since my book was published, I have had the privilege of speaking about our family journey in a variety of venues: bookstores, libraries, radio, podcasts, public television, support groups, and community service meetings. Most recently, I’ve been to two locales and realized this is where I want focus my attention: a place I can have the full attention of the audience; where you are specifically there to learn, and learning is in fact is expected. Yes, you guessed it: I’m talking about school.

A few weeks ago, I spoke to a classroom of college students who were each interested (or already working) in the field of autism. The fields of study ranged from occupational therapist, behavioral therapist, and physical therapists. I had no idea what to expect and did not want to talk down to them in the area of autism. Picking and choosing what to say or more so what not to say was just speculation. The professor wanted me to leave them with an ‘aha’ moment. That too was daunting. What could a wrinkling mid-forties woman say to bright eyed, firm-skinned college students? Perhaps they were just really polite, but I can say my talk was well received. Hands went up throughout the whole presentation with delving questions. We got off topic a lot and I loved it.

Later that day, I received an email from one of the students-it was a lengthy email telling me about her life and pursuits-boy is that girl busy! But here is what I loved the most-and not just because it’s about me:

…I just wanted to send this to thank you for coming in today and all of your insight. Being able to hear people’s stories and learn from their experiences is really what drives me to become an SLP. I really appreciated your honesty about the feelings that parents go through when their child is diagnosed and I think it transcends ASD parents…

See what I mean? She got it. The whole idea of why I want to speak about autism is conveying empathy for something you may not have experienced in your own life. If that isn’t the biggest part of learning, I don’t know what is.

My next victims were even more precious: my son’s middle school. If I thought speaking to college students was daunting, the thought of pubescent teenagers kept me up at night, literally. So I brought reinforcements: my 15 year-old super star daughter, who, by the way, has given three of these talks over the years to her own classmates and Ryan’s too. I know: awesome kids run in our family.

Again, I was worried about how to address them without speaking down to them. Kids are way more sophisticated than we give them credit for. I decided I would start by getting them focused on the Acceptance part vs. Awareness and then move to a broad generalization about the disorder of autism. I kept it general because I wanted my son in the room and I didn’t want this to be about him.

Let’s just say I was super nervous, like red hives up your neck, wet armpit, nervous. Because when I walked in, there were parents there, and I hadn’t prepared for that. Maybe it was a good thing to have so many adult eyes on me because it made me conscious of not talking to the students like they were five.

When I asked first off how many had “heard” of autism, every single child raised their hand (and parent too). This didn’t surprise me, but only reinforced a) how smart they are, and b) how permeated the concept of autism has become. So, I drove home the point that all of them had heard of it, so we could move past the autism ‘awareness’ part into ‘acceptance’. A lot of heads nodded and that was enough for me to move on.

I think this next part went well, mainly because they told me they liked it. I brought up five volunteers to explain the five senses and how sensory issues affect almost all autistic people. I had sand paper, slatted sunglasses, peppermint oil, coffee candy and a loud sound on my phone (and my lovely assistant was a big help too). I hoped to show them most people can process things like smells, tastes and sounds, without thinking about it, but to a person on the spectrum these can cause major problems. Especially if language is an issue, and that person on the spectrum can’t properly tell you they don’t like that smell, taste or sound. I think the reason this part was a win wasn’t just because it was a hands on display, but because nothing goes over better with teenagers than seeing their classmates wear funny glasses or smell a strange looking bottle.

So, speaking at schools is a no-brainer if my objective is to spread knowledge. I presumed that before I experienced these two presentations, but being there in person merely confirmed it. So, why do I write this today? No, not to brag (except on my kids), but to ask help. I want to do this more, but getting into schools is tough. I can find a message for everyone because there is a message for everyone. I need referrals or teachers or PTA’s to request me to come in. So put the word out-won’t you?

After all Autism affects 1 in 68 children. The more we focus on the younger generations the faster acceptance can really begin.

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Autism Month

Note from Me: There has been a long gap in the posts to this blog. My apologies. I’m working on a second book, fiction this time, so I think my brain and daily clock only allow me a certain word count. But since it is Autism Month I felt compelled to share some thoughts.

I’ve spent the last few weeks gearing up for Autism month-which started yesterday (and today is Light it Up Blue – World Autism Day- so hope you put out your blue light bulbs). I’ve been reaching out to my community, schools, libraries, etc., to talk about Autism. It’s something I am passionate about as many of you know, as my son is on the spectrum. If you didn’t know, scroll down farther on the blog and read snippets from the book I wrote about our journey. Or you can order it on Amazon (The e-book is on sale now for World Autism Day). Purchase on Amazon

A few weeks ago I was invited to a Facebook group of “Autism Ambassadors”, who are also reaching out to their communities. I was asked for a quote for an article about Autism Acceptance and it got me thinking more about Autism Awareness month and how it relates to Autism Acceptance. (See link a the bottom for that article) I think we all can agree, the awareness part is sort of ‘been there, done that’. Twelve years ago when my son was diagnosed that wasn’t the case. For those who read my book, I talk about a store employee that didn’t understand what I was saying when I explained my son was autistic, after he had the mother of all tantrums. Her reaction was “Oh, how great”. Clearly she didn’t comprehend the complete melt down my entire life was at that moment, nor what Autism meant. Since then, I think most people are pretty aware of autism.

But, it’s not the aware part I’m focusing on anymore. Acceptance is what I’m after. And it’s seems to be a common theme in the Autism world today. Acceptance comes from knowledge and I plan to teach anywhere I can, starting here.

I’m going to give you some homework today: Go to Google and type ‘Autism Acceptance’ and choose just one of the many links. If you have someone with autism in your life, your story could be much different than those you read about and can broaden your perception. If you work with people on the spectrum, it will hopefully demonstrate how different each child is. Or if you have no one in your life, I guarantee you will learn something.

Then if you will, take any insight you have gained, put it out in the world, in your own way: share an article you read; put a quote on social media; talk with a typically developing child who may not understand it yet-they are going to be the best ambassadors for change. Change can happen but it starts with you. If you can broaden your mind, you can most certainly help to broaden others just by talking about something heard about, but not quite understood.

I thank you for attempting this homework. And if you don’t have time to get on the Google, just click the link below, you will learn quite about from this article. More to come…

 

Article for Autism Acceptance (Yes, my name is spelled wrong, actually it’s only part of my name, so just get over it-I had to.)

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