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Fish Funeral

What is the proper edict for a fish funeral? An actual question I had to ponder recently.  Yes, our, beloved Beta fish, aptly named, Beta, died last week. I can’t let all the blame rest on me, but mainly it was me. I cleaned his tank too good. In my defense, I will say he was not looking his beautiful flourishing self, prior to cleaning the algae-stained tank. But to see him lifeless a few hours later actually piled a whole ton of guilt on me.

I should have known the second a living thing crossed the threshold to our house, it would become mine physically and emotionally, but it started out as a pet for my son. He really wanted a fish. I figured we would get a goldfish in a bowl and call it a day. He went straight for the betas and picked the most expensive one. After a few days, I didn’t mind. He was a friendly fish, gave me lots of “jazz hands” greetings and just looked so beautiful gracefully flowing around the tank. I grew accustomed to seeing him on the kitchen counter and found myself enjoying his elegant movements.

I even upgraded him multiple times. First adding a heater (I read they like to be warm) then when I couldn’t keep the tank looking clean, I bought a bigger tank with a filter. All the while he would smile and wave at me seemingly content with his tank do dads. The whole family began to enjoy him and take for granted he was here for the long haul. But I let the weekly cleaning of the tank slide, once (or maybe twice) and we had a terrible algae problem. You know the rest of the story.

So, on to the fish funeral; I felt compelled to not just flush our family pet, plus I was terrified of what Ryan would feel knowing his fish was dead and then flushed. I worried so much, I didn’t tell him for a few hours what I suspected, plus I wanted to be sure Beta wasn’t just in shock in the sparkling clean tank. When we knew for sure, I was crushed. I don’t think I actually cried but I got choked up. The anticipation of what Ryan would do was killing me. So I talked to Dan and we decided we wouldn’t do a bait and switch. We wouldn’t try to replace the fish in order to avoid a potential emotional meltdown. We were going to confront Ryan with death with a meaningful talk. We would explain Beta had died, wait for his response, talk it out and then offer to purchase another fish if that was what he wanted. The conversation went like this:

“Ryan, can you come here, please?” I asked. Dan, Jenna and I gathered around the tank and I tried to keep my voice calm. “Ry, uh, Beta…Beta…died.”

He turned quickly to the tank and looked at his lifeless fish. “Oh…how long has he been dead?” He asked. Relevant question I guess.

I looked at Dan for an answer. Nothing. Apparently, this was on me. I guess I had to take the brunt. “A little while, hon. I think it was time for him to go to Heaven.”

What felt like a long silence fell amongst all of us and I waited for the tears or the rage or something. Ryan walked back to his computer and sat down watching whatever he had cued up on YouTube. Still trying to make a teachable, life moment out of it, I said to him across the room, “I think we should say some nice things and maybe bury him. What do you think?”

“Yeah.” He said distracted looking at his computer. “We should dig the dirt and put him in.” That made me the saddest that he knew what “bury” meant.

So, we searched for a proper burial vessel. Dan’s idea was a plastic gum container and all I could come up with was a Brighton jewelry heart-shaped box. The heart box won. It seemed appropriate, after all, that little guy won our hearts. I quickly got Beta out of the tank into the box and closed the lid. I gathered the now scattered family back downstairs and outside. We said a few awkward words about him being a good fish, Dan dug a small hole and I put the box into the dirt. We even made a small wooden cross with his name on it. It seemed like we did it right. I can’t be sure as I’ve never been to or conducted a fish funeral before.

We went inside and I searched Ryan’s face and couldn’t tell if he was sad or not, some of the perks of being on the spectrum, so I thought I would ask if he wanted another fish.

“So, should we go to the pet store and pick out a new fish?” I asked tentatively.

He looked up and said, “How ‘bout a bird?”

Yes, the devastation was potent.

So, did we do our fish justice? Did we properly put to rest a small pet? I guess if you do what’s in your heart then that’s the right thing. And apparently replacing a fish with a fish isn’t the way Ryan would go. You change species and get a bird.

I said no to the bird, and we did get more fish. Let’s just say I had a few more private fish burials. I hope I get this right soon…

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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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Community

Sometimes you want to go
Where everybody knows your name,
and they’re always glad you came.

For those of you older than 35 you may recognize that as the theme song to the 80’s television show, “Cheers”. (And, you’re welcome for putting that song in your head for the rest of the day.) One of the reasons that song is in my head today is what it means in relation to community. I think we all want to belong somewhere (outside our homes) and feel welcome. Most people want a place to go where they are known, loved and accepted.  A place you are seen and appreciated for you.

When my son was first diagnosed, I wasn’t part of any autism communities. I was too busy focusing on bringing Ryan back from the dark place he was receding. Not to say we weren’t going to places where other families in our same situation attended. We swapped stories, gave knowing nods and appreciated each other’s  journey. We just weren’t full fledged members, per se, anywhere specific.

I came to the realization last year, that I had spent so long “mainstreaming” Ryan that I had forced him to become removed from his peer groups.  He had no friends with autism. He spent no time with any one with special needs. This made me feel terrible. He was missing a big part of his life and I needed to change that quickly.

The first place we started was a special needs baseball league. I had heard of this league before and contemplated it, but at the time had given up on organized sports for Ryan. He had been in a gym class, taken horseback riding lessons, and was on a swim team–all of which ended in the same manner. He lost interest and didn’t want to go back. It would become such a behavioral stand off, I would give in. It didn’t seem worth it for he and I to fight so much. Then I met someone highly involved in the league and what she said made me sit up and pay attention. “There is no pressure to play.” She explained that it was tailor made for kids with special needs. If they were having a bad day, no worries, take them off the field or even go home.

The ‘no pressure’ attitude struck a chord in me and I was intrigued. So, we attended a registration event for the league. Arriving that day, seeing the custom field flooded with all levels of abilities, and being blinded by all the smiles, I knew this was it. Ryan seemed to acquiesce to the idea and I immediately signed on the dotted line.

It’s been a few months playing on our team, and an aspect I love is seeing my husband on the field with our little boy. My big, tough husband, college hall of famer, former professional baseball player on the field tossing the ball with his son. That alone was worth the price of admission to this league.

But truly, the best part of when we walk into the park, is hearing “Hi, Ryan” from teammates and parents, and it has a beautiful sound. The sound of acceptance. People know him, he belongs.

However, with the weather warming up, Ryan hasn’t been loving standing on the hot astroturf so much. He often asks to leave and once in a while we let him. No one cares or ‘tiffs’ in our direction. We just go, un-judged. Last week was one of those days where a few kids were having a rough go. I saw a few meltdowns, heard some crying, and watched a full fledge wrestling match between a father and son. It happens. We all have bad days, and to a person who has to deal with external (or sometimes internal) obstacles those days are especially hard. If any of those kids would have needed to leave, no one would have minded.

The best part of the ‘no pressure’ attitude is the empathy we all have for each other as parents and care givers. Though we may not walk their exact steps, we know the extra paces it takes when you have a special needs child. We know that some days you just have to throw in the towel. There will be other days you can push for results.

What we have found in this league is more than just a place we all belong, a community of friends.  But just as important, it’s a place we can leave when we need to. Being able to take your uncooperative child away from a difficult situation, judgement free, is worth far more than I can explain. Having community of supporters that understands and accepts what your child may not be able to do that day, makes you “wanna go where people know, people are all the same…” 

 

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The New R-word

Retard. Retarded.

There. The R-word spelled out-and now we are all clear what I’m talking about.

I am not proud to say I have used the R-word. It’s a word that was used around me frequently in my youth. I may have used it to describe an impossible situation or the way I felt during a difficult exam that I wasn’t prepared for.

I didn’t grow up around people with special needs. I didn’t know any one who was mentally retarded. I guess that’s why it was easy to say the word and use it in my vocabulary. I didn’t associate it with any one person or use it as a descriptor towards anyone. Yes, I used it, and rarely felt bad about saying it. Well, until I had a child with special needs; a child with a diagnosis, a disorder. Suddenly the R-word felt horrible and awful and wrong.

I have curbed my use of the R-word as I also realized how hurtful a word sounds even when it’s not aimed at a person. Even when it’s describing a moronic situation. It’s just a bad word, a word I wish we could erase from our lexicon. That may not be a far-fetched wish, there are many groups fighting for mindfulness of how offensive and degrading this word is; and more importantly to urge people to stop saying it. I applaud these groups and encourage you to Google the “The R-Word” or “Project R”and watch the various videos. They are moving and inspiring and will hopefully make you mindful if you use the R-word.

Why am I talking about the R-word in a blog about autism? It appears we have a new R-word. My daughter tells me, every few days, people she knows, young people, smart, civic-minded teenagers say it right in front of her. It’s usually said in the context when a neurotypical individual is acting weird, or perhaps not understanding a subject in school.

“What is he autistic or something?”

Yes, the new R-word is Autistic. And each time my daughter hears this, I believe it makes her question the humanity of her peers. And each time I have to endure another story, I wonder too.

I can play devils advocate: perhaps having a word to replace ‘retarded’ feels better to some people. But in my opinion, replacing one word for an intellectual disability with one for a developmental disability doesn’t make it any better. It feels to me like it makes it worse.

Last week I heard a famous radio personality (in widespread syndication) say the exact same thing “What, is he Autistic?” I almost lost control of the car. I didn’t hear the whole topic they were discussing but it was clear her intent. It was meant to make this “fill in the blank” person sound moronic. It was meant as the ultimate insult. And it was heard by millions. I cannot tell you how terribly sad this makes me, on so many levels. Has our society not learned from the R-word? Have we not branched out to understand disabilities, and embraced them? Have we not become more socially sensitive? Has awareness done nothing to take away ugly words?

I don’t know how to stop this or alter its course, but I’m starting here. I refuse to give up on everyone.  I know there will be people who will continue to use words that reflect a disability in a derogatory way. I’m not talking to them, but appealing to the brave; like my daughter. My teenager whom I am encouraging  to adamantly tell people how offensive it is. And its okay to tell them her brother has autism. I guarantee you someone the offender knows is on the spectrum too. If 1 in 68 are currently affected, they know someone. If enough teenagers start to pair an ill-intended word with an actual person they know, or know of, perhaps that will be the wheels of change. Perhaps it will stop them from perpetuating ‘Autism’ as the new R-word.

My goal of awareness is in this vein of change. We have to go through some ugly phases before change can happen. But why not extinguish this new R-word now? Let’s not let it go on for decades until it becomes so natural to use it, you don’t think of it as offensive.

If you hear someone using this as a negative term, please correct them. Please tell them how disrespectful and cruel it is. ‘Retarded’ and ‘Autistic’ are disorders, not put downs. If they need words to insult someone, I have a few they can start with: fool, idiot, blockhead, dunce, ignoramus, imbecile, cretin, dullard, simpleton and my new favorite, clod. And if they need more check a thesaurus.

I grew up saying a word I wasn’t truly aware could be so powerful and how it could hurt so profoundly. Let’s do what we can to extinguish the dreaded R-word and not let there be a new one.

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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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Homework

After my last post, I pondered more about my own knowledge of Autism. And initially, I felt proud that I know a lot about Autism. But that’s incorrect. I know a lot about how Autism affects my son. I understand what Autism means to my family and me. So, I took my own recommendation and did the homework assignment to read about Autism Acceptance.

I clicked on an organization, which I am familiar with, ASAN-Autism Self Advocacy Network their mission: “ASAN believes that the goal of autism advocacy should be a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens”.

What I was struggling to say in my last post about acceptance, they define beautifully, and I probably should have looked at this prior to sending out my own definition, but alas I jumped the gun.

“Awareness is all about creating a sense of urgency and fear…. Awareness is easy. Acceptance requires actual work. Acceptance comes from a place of understanding… Understanding takes work. Acceptance seeks to meet us where we are, or at least far closer to equitably than awareness does… Awareness says the tragedy is that we exist as we are. Acceptance says that the tragedy would be trying to make us any other way.”

Read that passage again. I’ve read it four times and it gives me chills-kudos to ASAN for nailing it. Acceptance requires actual work. So, that reaffirms to me, we still have a lot to do.

As I read on, I came to a section called “Identity First Language”. For those of you who aren’t familiar with this, it is a raging (and I am not exaggerating that term) debate in the world of Autism. I don’t want to start any riots; I merely want to expose you to the term and to make you aware of the sensitivities to this topic and hopefully take your knowledge and Acceptance one step further.

So, what does Identity First Language mean? Put the person before the disability or condition, (I stole the following from thearc.com) “…and describes what a person has, not who a person is. Using a diagnosis as a defining characteristic reflects prejudice, and also robs the person of the opportunity to define him/herself.”

Example:

Person with Autism vs. Autistic Person

On the surface, theses statements may seem the same, but the real delineator is the first one suggests a separation of the disorder from the person. But can you separate a person from the disorder? There are so many times, I wonder if I am seeing autism or my son just being a crabby teenager. Or is his autism causing typical teenage stuff to be even more heightened? I can’t completely take Autism out of the equation, but I don’t want it to define him either. Yet, how can I separate him from his own traits that likely come from the disorder? Do you see the dilemma? This is the debate in a nutshell.

So, as you can imagine, this is truly a personal preference for how to refer to someone. And that preference can range wildly even between a parent and a child. I could delve much deeper into this hot topic, but for today, I’ll leave it here. I wanted to introduce the concept to you and hope you do more reading on it. If nothing else, at least, be aware there are individuals who prefer to be addressed differently and you should ask what their preference is: person with autism or autistic person? A real expert on People First Language is Kathie Snow. You can read her one page explanation here regarding all disabilities: Kathie Small

Summing up, I haven’t approached this yet with my son, as we don’t really talk with him about being a Person who has Autism. I have asked if he knows what Autism is and he says yes, but that is usually his response to most things. When I asked specifically for him to define it – he could not. I don’t blame him; it’s a quagmire of a definition. So, for now, I don’t push him, but I do wonder what his preference will be someday: Autistic Person or Person with Autism?

To me, he’s still and always will be just Ryan.

 

 

 

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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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You Are Awesome

You are awesome.

Wouldn’t it be great to think that about yourself? Genuinely believe it when someone told you? It’s hard to really let a saying like that give you more than a fleeting smile. Because we see the word ‘awesome’ a lot. It’s in every part of advertising, on greeting cards, teacher stickers, t-shirts, titles of books, and all over social media with some meme or another.

Urban Dictionary defines it as “Something Americans use to describe everything.” Perhaps we do use the word unanimously.   But when we say something is awesome; it’s not that we don’t mean it-it just may not have the most powerful impact because it is heard so frequently.

The word ‘awesome’ simply means: awe inspiring. Like just saying it should make you pause, mouth wide with wonder and perhaps, gasp. Yet we don’t, we may raise the corners of our mouth and move on quickly because it is so commonplace.

Earlier this week, I taught my son to text.  I thought it time to bring him in touch with his teen peers. He is very proficient with email, but I don’t think it gives him much social satisfaction. Phone calls are hard for him and I felt it was time to give him a tool where he can communicate easier; something with immediate gratification.

So, I slugged through the maze of family share on Apple to give him his own account and then rigged up my old phone so he could use it over wi-fi (oh, the wonders of technology). I was brimming with excitement to introduce something I hoped would take him one step closer to communicating with me, and the people around him, independently.

I showed him where the icon was for texting and then where to click to start writing. He stood back a few feet, mesmerized at the moving bubbles and watching our initial volley of messages.

ry's text 1

I shouldn’t have been amazed at the quickness he caught on to it; he is a teenager after all. But, I guess there’s still part of me that underestimates his abilities and thinks I have to break everything down for him.

Ry text 2

I was thrilled he was even interested in this exchange. So I typed:

rys text awesome

I wasn’t just throwing around a highly repeated phrase. I really felt it at that moment. My heart was full of pride and love for this young man who has overcome so much. I was wide with wonder and I did gasp in amazement at him. And for a second he was just a teenager on a phone texting with his mom.

As I sat in my sappy-mom-glory-moment staring at him lovingly I heard the familiar “whoop” of a reply and looked at my phone.

rys yes i am

I laughed. Out Loud. Hard.

He smiled at me, set down the phone and walked away.  As I sat there laughing, I took a screen shot of our conversation and of course I posted it on Facebook. I wanted to capture that moment and never forget it.

But days later, I keep looking his text, “Yes I am” and have started to think of it as his mantra. It’s like I had a secret look into his mind and was shown that he thinks he’s okay. He believes he IS awesome. And that is powerful.

What if we could make that word new again? If we could imagine a young boy believing he’s truly awesome and take that confident feeling into making the word encouraging again, then maybe we could find a way to inspire others to believe they are awesome.  I wish everyone could try to think of it as a genuine feeling you can have about yourself or someone else.

What a true gift to believe someone thinks you are awe inspiring and an even better is to honestly think it of yourself.

I think you all are awesome. Now go tell someone else they are, but mean it. And make sure they know you mean it.

 

 

 

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