3 Reasons We’re an Open Book About Our Son’s Autism

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I know many parents struggle with whether or not they should openly reveal their child’s autism diagnosis. Since autism is often a hidden disability, many limit who knows to the immediate family and the professionals working directly with their children.

That’s not the decision we made.

And when I say decision, I mean that we never sat down and even talked about whether to reveal or not to reveal. For us, talking about our son’s autism diagnosis isn’t an issue.

Now we don’t just blurt it out like, “Hey, nice to meet you, my son is autistic.” But it’s OK with us if it comes up in the natural course of a conversation. In fact, I love it when it does because it’s my opportunity to give someone a perspective on autism they haven’t been exposed to before.

For our family, it comes down to three reasons why we openly discuss our son’s autism:

1. There’s no shame in being autistic.

Autism is a diagnosis and yes, for my son, that means he needs some special intervention and support. His life is definitely on a different path but there is nothing wrong with being autistic. There’s nothing wrong with having any kind of disability for that matter.

When my son was diagnosed with Aspergers syndrome, we finally had the last piece of the puzzle. Finally, we were looking at the full picture of who he was. It helped inform us so we could make the best decisions for his education and future.

Autism makes Jonathan… Jonathan.

I do think that Jonathan struggled with his diagnosis for many years and felt shame about being autistic. He and I have talked about our being open about his autism and he’s said that it allowed him to grow into being comfortable with his diagnosis. Today, he feels good about who his is and I can see it in the way he carries himself. He smiles more often and enjoys being around other people.

2. If we want the world to accept autism, we have to accept it first. 

If we as a family can’t be open about autism, then how can we expect the public to be accepting and understanding? The best way to get to know autism is by being open about being autistic. Let questions be asked! We’re not afraid to answer. We modeled that attitude for our son and he’s been such a positive advocate for himself. I believe that our unconditional acceptance of him is a catalyst for acceptance from the community.

Yes, there is a downside to revealing. Sometimes people are not understanding and even afraid when they hear “autism.” I’ll give you an example: My son had a job interview that was an audition for a traveling theater company. When he came home from the audition, he was really happy with how he did and he said that he felt comfortable enough to mention he had Aspergers syndrome. “Wow,” I thought to myself, because it’s not something you typically do (or need to do) on a job interview. I was so sure he’d get the job because it was a perfect fit for his talents and he had a resume of past work experience and recommendations to prove it.

He didn’t get the job and I suspect that it was because he revealed his autism. He was disappointed and I was heartbroken. But I realized that it was better in the long run because if he hadn’t revealed and gotten the job, it may not have been a supportive work environment.

3. We don’t want our son to be afraid of autism.

When you have a secret, you always live in fear that your secret will be exposed. It would’ve felt like a family secret if we had kept his diagnosis to ourselves. We don’t ever want our son to have to hide who he is or to live in fear that someone will “discover” his autism.

I respect your decision if you are a parent or an autistic adult who chooses not to reveal. I trust that you have made the best choice for your personal circumstances. Continue to do what you need to do for your child or yourself. For us, that means we’ll stay an open book. It’s not in us to live any other way.

A version of this post originally appearer on Geek Club Books.

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How My Parents Showed Me I’d Be OK in the Dark if I Lost All My Vision

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When I was in preschool, my dad came home from work one night, walked downstairs to the corner bedroom the four of us (my parents, my brother and me) shared and stood me directly behind him, facing the door.

He told me, “We’re going to play a game to see how well you can copy me. When I walk, you walk and when I stop you stop.” He took me all over the house, and when we made it back to the room, we repeated the game. At the time, I thought it was fun, and I really wanted to impress my pops as all daddy’s girls hope to do.

It wasn’t until about 24 years later, when I was just starting out in my current position at work, that I asked Dad about it. He paused for a few seconds and told me the reason we did that was because at the time, my eye doctors didn’t know if I’d keep or lose my useable vision. He wanted me to be prepared for being left in the dark.

As I sit here remembering all the amazing things my parents, brother and baby sister did to make me the person I am today, it gives me goose bumps. My parents weren’t experts in children with special needs. At the time, neither of them had even finished college. They didn’t read books or go to seminars; they just adapted as needed.

I remember that over several hot evenings one summer, my mom taught me how to jump rope by having the neighborhood girls swing the rope while she put my hands on her hips so I could feel when it was time to jump. She would say, “Listen to the rope,” and that’s how I learned.

When I was a little older, my dad built me this awesome light box to enhance the things I was able to see. My brother Jon and I promptly took it apart because we needed the lightbulb from it. Incidentally, I got splinters in my fingers from the wood, and we both got in trouble. More important — we got our lightbulb.

When our sister came along, Jon and I were 13 and 12 respectively. We were instantly enamored with our doll baby. He taught her how to dance; I taught her numbers and letters. I’d like to take the time to tell you that my teaching her these things wasn’t an effort to create a tiny genius… I just needed her to be able to spell out the directions on the side of the Hamburger Helper boxes so we could allude starvation while our parents worked late nights.

All of these little moments I took for granted were actually pretty extraordinary. Even now, I’ll whip out a skill and when asked how I know how to do it, I can almost always pinpoint how my parents used games or stories to show me. When I’m asked if we had adaptive equipment or physical therapists come over, I can honestly say no; my family just helped me figure it out. 

Tonight will be a late night for me. I’m going to class after work. It’ll be dark when I get back home, and I’ll walk into my cozy kitchen, put my stuff down, get ready for bed and turn on the light I leave on every night (as an afterthought).

Because I do just fine in the dark.

Danielle and Katie DC

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Breast Cancer Survivors Rock ‘Flat Tops’ in Powerful Underwear Ads

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These three women have a story to tell with their bodies.

An underwear brand called Play Out, which makes and sells gender neutral underwear, has released a body-positive photo series featuring three breast cancer survivors. Each of the women in the series have undergone double mastectomies, and they all chose not to have reconstructive surgery.

Jodi Jaecks + Emily Jensen_in PLAY OUT Wired Briefs_Photo Credit Candace Doyal_6841
Emily Jensen and Jodi Jaecks. Photo by Candace Doyadfs.

In the photos, survivors Emily Jensen, Jodi Jaecks and Melanie Testa bear their scars to raise awareness and to challenge preconceived notions of femininity and what it means to be sexy.

Play Out created the images in collaboration with FlatTopper Pride, a new breast cancer support community dedicated to unilaterally and bilaterally flat LGBTQ individuals who choose not to undergo breast reconstruction or wear prostheses.

Melanie Testa_in PLAY OUT Wired Briefs_Photo Credit Nomi Ellenson_13
Melanie Testa. Photo by Nomi Ellenson.

“A photo can have the greatest impact — it exposes people to the reality of a post-cancer body,” Jodi Jaecks told The Mighty. “I want to start a movement to expose and normalize these images of bodies and to hopefully support and motivate women who don’t want to have reconstructive surgery. I want them to feel like that’s an acceptable choice and to know that it doesn’t diminish their womanhood or their sexuality.”

Jodi Jaecks + Emily Jensen_in PLAY OUT Wired Briefs_Photo Credit Candace Doyal_6906
Emily Jensen and Jodi Jaecks. Photo by Candace Doyadfs.

“I see being breastless as liberatory,” Jensen said in the press release. “People speak of post-mastectomy bodies as being abnormal or disfigured, and that’s horrible. My body is surgically altered, but it is not abnormal, and it is still very sexy.”

Melanie Testa_in PLAY OUT Mechanisme Briefs_Photo Credit Nomi Ellenson_8
Melanie Testa. Photo by Nomi Ellenson.

“Living in a society that does not reflect the image of my body, breastless, scarred, affected by cancer, has great consequence and influence to those who are newly diagnosed,” Testa added.

See more of the powerful images below: 

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Androgynous model Rain Dove with Melanie Testa. Photo by Nomi Ellenson.
Jodi Jaecks + Emily Jensen_in PLAY OUT Wired Briefs_Photo Credit Candace Doyal_6844
Emily Jensen and Jodi Jaecks. Photo by Candace Doyadfs.
Jodi Jaecks + Emily Jensen_in PLAY OUT Wired Briefs_Photo Credit Candace Doyal_6790
Emily Jensen and Jodi Jaecks. Photo by Candace Doyadfs.
Jodi Jaecks + Emily Jensen_in PLAY OUT Plexus Briefs_Photo Credit Candace Doyal_6648
Emily Jensen and Jodi Jaecks. Photo by Candace Doyadfs.
Melanie Testa_in PLAY OUT Plexus Briefs_Photo Credit Nomi Ellenson_4
Melanie Testa. Photo by Nomi Ellenson.
Melanie Testa_in PLAY OUT Plexus Briefs_Photo Credit Nomi Ellenson_6
Melanie Testa. Photo by Nomi Ellenson.
Melanie Testa_in PLAY OUT Plexus Briefs_Photo Credit Nomi Ellenson_2
Melanie Testa. Photo by Nomi Ellenson.

To see more of Play Out’s gender neutral underwear line, go here.

h/t HuffPost Women

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How I Know My Son Loves Me Without Hearing Those 3 Words

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He doesn’t use his words, but he tells me he loves me, a hundred times a day in a hundred different ways. He tells me with his eyes when he wakes up and I’m the first person he sees. He smiles the faintest of smiles with his puffy morning-eyed slumber, and I know I’m the luckiest person in the world. I sneak in a snuggle and breathe in the smell of life from the top of his head, and I wish I could cancel the world and stay in bed with him all day.

He pulls me over to the swing and gestures to help me place him on the seat. I push and push and push until my arms want to fall off, his entire body at peace. I push him on the swing 100 times in a row. And then one more push after I swore I was done. His happiness, his calm, his squeals of delight are nothing but a big, huge I love you.

He tells me I love you with his unstoppable strength, when he doesn’t want to work and he is so sick of another session or appointment or therapy. He aches to play outside and be alone. He screams and cries and looks to me to rescue him. I don’t; I tell him, “You can do this and I am so proud of you,” even though sometimes I really just want to grab him and run away. He tells me that he loves me when he calms down, stops crying and starts to do what is asked of him. His face says, “I don’t want to do this today, but I trust that you know what’s right for me, Momma.

When he falls down and gets hurt, he rushes right over to me, and it makes me feel like I just won a prize. He cries while I hold him and whisper, “It will be okay.” He lets me hold him tight while we rock back and forth until his shuddering stops. His arms around my neck, his ability to find his calm in me, tell me without a doubt that he loves me with all his heart.

He tells me he loves me with the relief in his eyes, when I am able to figure out exactly what he is looking for, or what he wants or needs — even if he is not able to say the words. I know when he is hungry or sad or frustrated. I know when he is hot or cold or excited, all by just a look. I know he is anxious when he can’t stop humming, ticking and moving and he is covering his ears. I know he is happy when he jumps up and down and flaps his hands and makes high-pitched noises. I’ve intently studied all of his non-verbal cues over the years and sometimes I think I know him better than I would if he could speak.

He tells me he loves me when, for the first time in months, he tenderly grabs either side of my face with his sweet little hands, he places his warm soft forehead against mine and looks so deeply into my eyes that it steals my breath. “I know you are in there, baby,” I whisper with tears threatening to jump out. “I will never give up on you. I love you too.

So no, he doesn’t speak the three little words, “I love you,” but he tells me all the time. He loves me, and I’ve never been so sure of anything in my life.

To all of the incredible mommas out there: always remember, although they may not be able to say it, you are so loved.

A version of this post originally appeared on Life With Greyson.

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How an Autism Diagnosis Improved Our Marriage

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I generally shy away from writing about my relationship with my husband. Writing about something creates a fixed point, and I would much rather leave my relationships flexible, allowing for an ebb and flow that writing sometimes does not allow.

However, getting our son’s autism diagnosis significantly affected my marriage, and I think that is important to talk about.

The impact was enormously positive, and we still enjoy its benefits today.

After years of trying – and failing – to find the best way to teach my son right from wrong, rewards and consequences, social norms and to simply keep him safe, his diagnosis was a source of relief for us. It took a huge weight off of our shoulders to realize it wasn’t us – we were not bad parents.

We have become more patient with each other, no longer laboring under the painful feelings of “What have we done wrong?” and What are we doing wrong?” After reading so many parenting books and listening to so much advice, we finally feel like we are on the right path. Now, we can help our son on this path, teaching him right from wrong, understanding what motivates him and giving him tools to function within social norms. We have a shared understanding about what we need to do and successfully work as a team.

The diagnosis opened our eyes to who our son really was, enabling us to pair our love of him with true understanding. In the depths of my soul I know there is no greater gift we can give our child than honest acceptance of who he is.

Together, we’ve had to make some hard decisions — the decision for me to leave my out-of-home job and its steady income in favor of consulting work from home. This meant both of us would work commission-only jobs. It was a risk, and one that we might not have been brave enough to take if it weren’t for the courage that came from knowing it was what our son needed.

I had to do the math to recall how long my husband and I have been married – 12 years this month. It’s not that we don’t care, but because the most important thing that came out of our son’s diagnosis is that we learned to take things one day at a time.

When you’re taking things one day at a time, you don’t look too far behind and you don’t look too far ahead. There is a certain kind of zen that comes with that, a zen that feels good and right.

That is good for all of us.

A version of this post originally appeared on Autism Mom.

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8 Things I’ve Learned About Talking to My Teens With Autism

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Autism is a vast and complicated diagnosis. Add teenage hormones to the mix and you’ve got a whole new level of behaviors. While I’m in no way an expert on every single person with autism, as a mom with four children on the autism spectrum, here are some suggestions that may (or may not) help you communicate with a teenager with autism. Since my teenage sons are completely verbal, my tips are geared more for the kiddos with autism who have acquired speech.

1. Skip the sarcasm.

Many individuals on the autism spectrum are very literal, and sometimes don’t get sarcasm or care for it. Since they can have a hard time making eye contact and looking at faces, they might miss a telling smirk or smile. Your teasing or joking may go over like a lead balloon. Sometimes though, the opposite poses a problem: My teenagers often take a joke too far, improperly using sarcasm, and are shocked when they offend someone. To them, it was merely a joke. With humor, try to be as straightforward as possible.

2. Don’t ask too many questions. 

My teenagers on the spectrum hate to be quizzed and consider your questions inane. Often times they feel like they’re being interrogated. In this case, less is more. Questions like: “How’s school?” or “Who is your favorite teacher or subject?” always fall flat with my teenagers. Want to get them to talk? Ask about their strong interests, and they might be willing to talk at great length.

3. Bring solid evidence to your rationalizations.

Because my teenagers have a hard time recognizing social hierarchies, I avoid saying things like “Because I said so!” and “I’m the boss.” This kind of language typically doesn’t work. I always have an easier time using facts, rules and laws to back up why things need to be a certain way.

4. Don’t scold a teenager’s behavior before understanding what it is.

When a teenager with autism doesn’t respond to your questions, avoids eye contact or walks away without a word, don’t assume her or she is being rude. Social interaction and eye contact can be difficult for people with autism, and even physically painful for some. Some have processing issues and it may take a few moments for them to cognitively process what you said before they are able to respond.

If you see behaviors like rocking, tapping, banging, picking, covering their ears or anything else you think is “strange,” just ignore it and stop staring. They’re self-regulating in a world that can be loud and overwhelming to process, and the last thing they’re thinking about is whether or not it’s bothering you. Let their parents, therapists or teachers help them learn appropriate behavior or coping mechanisms when in public.

5. Text messaging can provide better communication than talking on the phone.  

In my experience, the best way to communicate with a teenager with autism on a phone is through text messaging. Now that I think about it, the best way to communicate with any teenager is probably through text, but I’ve found that when you have a teenager with autism, it could mean so much more. You may even be surprised at the quality of the conversation. They might be more relaxed and willing to respond.

6. Don’t expect them to “perform.”

There’s this great saying: “If you’ve met one person with autism, you’ve met one person with autism.” Don’t assume everyone on the autism spectrum is a little Rain Man. Sometimes when you ask my kids about their talents or interests, my teenagers will act like they haven’t a clue what you’re asking, magically forgetting all their geography knowledge, their ability to play drums or their second-degree black belt karate skills. Personally, I think it’s their particular devious sense of humor.

7. Be patient with them.  

I know they might do and say things you find strange or different. But please, be patient with them. They aren’t spoiled brats, purposely disobedient nor defiant. They’re just learning how to survive and cope in a complicated world that often overwhelms them.

8. Accept them, autism and all.  

Try to enter their world instead of always trying to force them into yours. Be present with them; they’ll know you’re there. You may be very surprised at the conversation and the joy expressed from the teenager who is happy with your effort.

A version of this post originally appeared on Our Version of Normal.

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