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Reality check….

2 Aug

This past week I was browsing around online….stumbled onto a blog (which will remain nameless)…and got a slap-in-the-face style reality check.

This blog, which is fairly popular, has an anti-ABA tone throughout it’s posts. The writer, a mother of an autistic boy, posts about how detrimental she thinks ABA can be. She believes ABA shames it’s learners, it is by nature a “dangerous” treatment and is harmful to those who receive it; she believes it damages a child’s ability to form relationships, it takes away their voice, it’s overall a very limited practice which ruins a parent’s view of their child, and it over-pathologizes children.

Wow.

What struck me most was that in all of her rants about how terrible ABA is, she didn’t at all express the benefits of ABA or the years of research showing it to be the most effective treatment for individuals with autism. No, she didn’t shed light on any of that. Instead, she put out messages of skepticism and fear, encouraging others to stay away from so-called experts and to question everyone and everything.

Call me naive, but I had no idea parents out there so hated what I do for a  living. I had no idea parents out there call my work dangerous, damaging, and harmful. It really took me down a notch to hear that not everyone thinks what I do is as great as I know it is. Sure, I have worked with plenty of parents who don’t think ABA works; who don’t think ABA is valid or something they’d like to commit to. But I have NEVER met a parent who flat out loathed ABA the way this parent does. People out there think my work is emotionally injuring their child? People out there believe my work is taking away their child’s voice? It’s ruining their perception of their child? What????!!!!!????

It’s really sad to me that any parent would choose to focus on the work of a few bad practitioners and thereby discredit the entire field altogether. Would any parent hold doctors to the same standard? If a doctor misdiagnosed, or couldn’t cure a disease, or gave the wrong prescription to his patients…would that mean that ALL doctors are bad? The entire medical profession is tainted? I don’t think so. So I wonder why this is the case with behavior analysis.

It’s also really sad to me because I know the kind of work I do. I know the way I think about and feel about my learners, and I know the ways I have helped them and their families. I know that I use ethical practices that ensure my client’s dignity. I know that I genuinely care, and that I see my clients as people, not as diagnoses.  It’s just a shame that some parents out there are so let-down by some people practicing ABA that they decide the whole science is destructive.

How can I change these parents’ minds? Why do I even feel like I need to? It’s funny, because I’m normally more of a “live and let live” type of girl. Opposing views don’t threaten me; I’m secure in my beliefs and don’t care if people disagree with me. I have no interest in debating people online, and can’t stand when bloggers pick fights that they’re “right” and someone else is “wrong”.  But right now, I find myself feeling very protective of my field. And, I guess I know why. Because I believe in ABA. I believe in it’s power to change lives. So, I feel responsible to untangle the myths and misconceptions about ABA. It’s interesting that this has stirred up in me a desire to defend my position, when I would normally let it roll right off my back. And, while I still respect that everyone has their own values and beliefs, and I would never pick fights or sling mud to be heard, I feel the need to spread the word about the incredible value of ABA. So… that’s my plan.  Stay tuned! I’m on a mission! 🙂

StayTuned

10 second phone call

25 Jul

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This week I had the best phone call I’ve had all year… And it was only 10 seconds long.

This is how it went:

Me: Hello?
Dylan: Hi, this is Dylan. How are you?
Me: Oh hi Dylan! I’m good, how are you?!
Dylan: I’m good. I just called to say hi.
Me: Oh okay. Im glad you called. I miss you. I hope you have a great day!
Dylan: Talk to you soon. Bye.
Me: Okay, I love you! Bye!

My sister is working with Dylan to teach him how to call people. Our conversation was entirely scripted. But! The goal is to prompt him through phone calls a few times, then fade the prompts and let him try it independently.

Some may wonder why this is important to me or why I think it’s so great, being that it was completely prompted. Well… For one, he willingly did it. Two, he’s learning the abstract concept that a person can be represented by a phone. He can talk to someone even though he can’t see them. Three, he is learning several important skills: how to dial numbers, the etiquette for greeting someone, asking questions, waiting for the response, and saying goodbyes.

The ability to make phone calls, which is so simple for most of us, does not come naturally to Dylan or other kids like him. It must be broken down and taught. And, it’s a skill that we can teach progressively to open up new doors for him.

Along with learning how to call family members we can teach him how to place food orders over the phone, how to make emergency calls, how to make phone plans with friends, how to set appointments, etc. The possibilities are endless!

I’m looking forward to my phone call from him next week. 🙂

1 year

23 Jul

Today marks my 1 year anniversary here at The Autism Onion! I made my first post a year ago, and began my Onion journey!

In the past 365 days my site has gotten just over 11,500 views.

*falls to the floor*

And, The Autism Onion has been viewed in 62 countries!

*falls to the floor again*

For those of you Mega-Bloggers, I know this is piddly. I get it, some blogs get those kinds of views every day.

But, for me and my little blog…this is incredible.  I have been able to connect with and share my story with so many people. It’s amazing.

Thank you for reading my blog. And, here’s to another year of The Autism Onion!

Hollywood, here he comes!

15 Jun

Dylan had a “Film Festival” at school last week. Each kid in his class made a movie about a favorite topic. Up there with the “Happy Birthday” song, Dylan’s favorite thing is marine life. He LOVES all different kinds of whales, dolphins and seals. He visits Sea World about 3-4 times per month, and the cast of their shows even recognize him when he comes because he’s such a regular.

Anyways… Dylan’s movie was a slideshow of pictures with a voice over of him reading facts he’d written about dolphins. I wasn’t there to see it in person, but my guess is that he was pretty excited to share his movie with his classmates.

First he gives an introduction, “My name is Dylan […] I like swimming and doing crafts. I enjoy swimming and running.” Then he tells the audience all about dolphins: “Dolphins have 2 flippers. They have 1 tail. They have 1 dorsal fin. Dolphins have very smooth skin.” He goes on to share how to care for dolphins, where dolphins live, and shows they perform in at Sea World.

 

Here he is in the directors chair at his very own movie premiere…

DylDolphins

 

Can I just say….this little guy amazes me LITERALLY every time I see him.

Disillusioned

13 Jun

disillusioned

 

Well, well, well…it’s been a while!

 

I’ve been drowning in work responsibilities and haven’t had a spare moment to even think about blogging. But today’s the day I dust off my keyboard and spill my guts. If you’re hoping for a helpful or hopeful or educational post, you might try finding one on Google; ‘cuz this is not that. Not today anyways.

 

Days like today chip away at my love and passion for my job.  Or should I say… WEEKS like this.

 

I’ve had a series of frustrating events happen at work that have burst my bubble on this whole career. Parents who distort reality and make ridiculous accusations. Parents who refuse to implement strategies. Endless reports and corrections and revisions and deadlines. Unbearable number of mandatory meetings (that I’m not paid to attend).

 

At the end of the day…. I chose a job in ABA for one reason, and one reason only…. to learn everything I can in order to help my brother. Along the way I’ve been able to help dozens of children and families. And that’s amazing! But that’s really a fringe benefit and a huge bonus in my quest to help Dylan. The real prize is having years of training, and experience, and education about how to best serve my brother.

 

And with the exhausting, punishing, maddening past couple of weeks that I’ve suffered through… I’m just deflated. I feel disenchanted and disillusioned with my job.

 

I’ve worked reeeeeeally hard to get where I am in my career. And, I don’t honestly plan to forsake it all. But, it’s awfully tempting to throw my hands up and say “Alright, it’s been nice knowin’ ya! I’m out!!!”

 

Hoping next month is better…. Hoping to get back my zeal for my job. I know it’s still in there somewhere. I know what I do for a living has the power to change lives…. and I’m incredibly blessed to have my job…. I guess that’s what I need to focus on…

Happy Birthday Dyl!

14 Apr

Dylan’s birthday party was this weekend. He gets really excited about his birthday every year. He loves parties and piñatas and cakes and candles. This year he chose to have a bowling party, and he got to celebrate with friends and family. But the best part (as it is every year), was singing to him during cake time.

You see, what my brother loves most about his birthday is the Happy Birthday Song. I mean, he LOVES it. He squeals with delight, smiles from ear to ear, and the joy he gets from people singing it to him is unparalleled and extremely contagious. His excitement is ridiculously adorable, and it’s the highlight of all his parties. Here are some pictures from PhotoStro.com, which captured his priceless expressions. I dare you not to smile…

DylBdayPix

10 years ago

9 Apr

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 On this very day, 10 years ago, my littlest brother Dylan was born. I remember spending the day at the hospital with my siblings waiting for him to come. I was so excited when I finally got to hold him. I think I even skipped school the next day to be able to hang out at the hospital again. I was a Junior in high school at the time. And, I remember bringing his chocolate bar birth announcements to school with me and sharing with my friends.  I was so excited to have another baby brother!

My family and I had no idea the impact his little life would have on so many. But here we are, 10 years later, doing our part to share our experiences with those finding themselves on similar journeys. I know he will continue to inspire others, make them laugh, and maybe even change people’s perceptions. The effect he’s had on the world, unknowingly, in just one decade…incredible. I’m excited to see what the next 10 years bring us. But then again… can he just stay little, please?

Happy Birthday Little D!

Autism Awareness Month

4 Apr

I wrote this 2 years ago, in honor of World Autism Awareness Day, and ended up not sharing it…Until now.

“April 2, 2011- I thought long and hard about what to write for today. I came up with this… an honest look at what autism means to me.

Autism means heartache. It means fear. Fear of the unknown, fear of vaccines, fear of the future, fear of stagnation, fear of stigmatization, fear of failure, fear for safety, fear for when I’m gone. It means a family changed forever. It means loss. It means sadness, and anger, and hopelessness. It means worry, and panic and anxiety. Autism means pain beyond words. It means planning, and hoping and wondering and wishing. It means praying in tears for a cure, or even just for progress. It means a broken relationship. It means behaviors, and stims, and prompting, and teaching. It means uncertainty. It means waiting. It means denial, and repression. It means powerlessness, and inability. It means guilt. It means inadequacy, and unbearable hurt that I can’t take autism away. It means tough love, and pushing for more, and not giving up. It means the life I wish for my brother may never happen for him. It means the relationship I wish to have with my brother may never happen for me. Autism means making the best out of what you have. It means looking for the silver lining in everything. It means quirkiness. It means screaming and crying and tantrums and aggression. It means repetition and routine. It means triumph in every small victory. It means pride in every accomplishment, because they were so much harder to achieve. It means being aware. It means devastation. It means despair. It means frustration and hatred and boiling blood. Autism means sorrow and longing. It means different. It means embarrassment. It means never being satiated. It means advocacy and fighting and educating. It means a life-long battle. It means silliness. It means being perplexed and stuck. It means dichotomy. It means ambivalence. It means being misunderstood. Autism means caring, and compassion, and sympathy and empathy. It means a sweet smile. It means hugs and kisses worth more than a million bucks. It means redefining. Redefining success, redefining hope, redefining progress, redefining values, and strategies, and priorities. Autism means struggle. Struggle for the afflicted, struggle for their families. Autism means strength. Autism means weakness. Autism means faith. It means a new direction. It means helping. Autism means broken hearts. Autism means passion. It means finding joy and elation in every feat. It means never giving up. Autism means unconditional love.”

It was interesting for me to go back and read where I was at in 2011. I remembered writing about the gut-wrenching pain of autism, and just how many emotions a person can have about it. I didn’t remember my piece being quite so… What’s the right word?….depressing?? I can see that I’m in a different place, emotionally, now than I was back then. Not that the deep pain of autism has disappeared! No, I don’t suspect that it ever will. But I have seen so much progress in my brother that it’s allowed even more hope and excitement and pride to come in. (Those have been there all along, by the way.) All of the hardship and turmoil remains. I don’t think I’ll ever NOT be sad that I can’t have the type of relationship with my brother that I would like to have. But, I am just so overwhelmed with happiness and gratefulness for the relationship I do have with him. And I don’t think I’ll ever NOT be heartbroken that he may not have the life I wish he could have. But I’m determined (like the rest of my family) to make sure he has the best life he can.

He makes me smile unendingly. He makes me laugh, and beam, and he motivates me to do what I do. Autism is a beast. But it will never take away how remarkable my little brother is. And, let me just say, he’s pretty darn remarkable!

AngDyl

So tall…

1 Apr

My brother turns 10 soon.

 

I visited him yesterday for the first time since Christmas. Even though my mom and his dad live within minutes of me, I find that I get so busy with work and church and friends and my husband and everything else going on. Life gets in the way, and I’m not able to visit him as often as I’d like to. But I got to see him yesterday to drop off an Easter basket, and when I walked in, I was shocked….

 

He was so tall!!!

 

Somewhere between December 25th and March 31st, my little baby brother grew what seems like a mile. Okay, so it was probably 3 inches or so… but oh my gosh! He was huge!!

 

It made me sad. I know that’s typically a parental response… sadness that their little baby is growing up. But I felt it! My little brother, my Little D, was not little! And, I realized I can no longer carry him (not easily, anyway). I know I picked him up to get my goodbye hug on Christmas. I had no idea that would be the last time I’d be able to lift him.

 

Where did the time go? How did he get so big?

 

It was a loud reminder of the fact that he’s getting older, and he’s maturing. And, while it’s sad on the one hand, it’s also extremely exciting on the other hand. He has come such a long way. He amazes me everytime I see him. Literally. Everytime.

 

The way he gains people’s attention by calling their names…

The way he asks questions…

The way he asks for help…

The way he writes and spells….

Even the way he cooperats with calming techniques when he’s frustrated….

 

He’s so awesome. And even though he’s up to my chest now… He’ll forver be my Little D.

Autism Tattoos – Part 2

10 Mar

In January I did a post featuring reader submissions of autism tattoos (you can see that post here). My sister’s tattoo that she had done for our brother was my inspiration for that post. This is my sister and her tattoo…

Lyss

I decided to do a follow up “Part 2” and share more autism related tattoos after the amazing response I got for my original post. Once again, there was no shortage of family members and friends who had decorated their bodies with symbols of autism. And interestingly, this round there was a strong butterfly theme! Whether to promote awareness, spark conversation, or to serve as inspiration, motivation and a reminder, people show their love by their tattoos. Here they are… click to enlarge.

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