What I Would Have Told Myself The Day I Was Diagnosed With Autism

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Dear Kerry,

When you arrived at the hospital today, you may have thought it was just for another checkup. Over the past year now we have been very used to these visits. Going to doctor after doctor throughout the tri-state area, some with funny elephants on their walls and others with what feels like an entire toy store for you at your disposal. What will make today’s visit different than any other though is today your parents will find out for the first time that you have something called PDD-NOS, pervasive development disorder not otherwise specified, a form of autism.

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You won’t learn what those initials and autism are for six more years but what I can tell you now is that there is a long road ahead for us. There are going to be many ups and downs along the way. You’ve already had to deal with some of the downs from being non-verbal until you were 2 and a half and now having sensory integration issues, emotional difficulties, a stutter and not being able to speak in complete sentences. The emotional issues are heightened for you because more than anything, you are often in overload because of the anger you’re feeling about not being able to communicate.

I wish more than anything right now I could go back to those days of your growing up and take that anger away. That I could take that feeling of self-doubt away from you while growing up when you had those difficulties that you thought may have gone on forever.

Why can’t I communicate?

Why can’t I make friends?

Why do I scream when someone tries to touch me?

Will I ever be loved for who I am?

And then finally…

Why me?

I know the road seems dark right now but what I can tell you is this:

You will learn to communicate.

You will make friends.

You will become someone who loves to be touched to the point that you’ll even want to go to Central Park one day in New York holding a “Free Hugs” sign.

You will find out that you were loved all this time by your family, your friends and later, by several girls in romantic relationships.

And then, when you see that there is a light at the end of the tunnel, you won’t question why you have autism. You will love the fact you were put on this planet with something that you have been able to embrace, which has made you a national speaker and role model to countless in the autism community today. Because, today, you have learned what your weaknesses are and what strengths your autism brings to your everyday life–like being able to focus on key interests for long periods of time. That at other times, you will be one of the most genuine and truthful people that you will ever meet.

So, Kerry, today you may have been diagnosed with autism, and the road may indeed be long, but don’t let autism define who you are.

Define yourself.

Different, not less. — Temple Grandin

Autism is a very wide spectrum. If you’ve met one person with autism, you’ve met one person with autism. I can’t say that my story above will be similar to the next individual, or that we will see autism in the same way. What I do know though is that we were all put upon this earth with challenges to face and overcome. For everyone in our community, what I ask is that you stay true to the therapies and supports our loved ones may need and always try to do right by them.

It took me almost 16 years after being first diagnosed to see this message the way I do now. After the occupational therapy, the speech therapy and the physical therapy, I have a much different outlook, and I wouldn’t have been able to do that without our community.

Always believe great things are possible. We know more about autism than we did yesterday, and we sure will know more about it tomorrow.

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Movie Scene That Unexpectedly Helped Me Understand My Son's Autism

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Screen Shot 2015-01-08 at 11.00.20 AM I wish I had a dime for every time someone told me my son doesn’t look autistic. No, really, I would have a pretty hefty bank account. I’ve heard it from strangers, friends and family. I’ve actually heard more than once that I’m lucky he doesn’t act as autistic as some children with autism. To some, this may seem like a compliment, but for me, I know too many amazing little people on the spectrum to think negatively when I hear the word “autistic.” I see countless videos of my friends’ children on the spectrum who are laughing and smiling and enjoying life. Granted, not every moment is easy or happy, but all families have challenging days and moments with or without autism.

Before delving into the world of autism, my husband and I were guilty of believing these stereotypes as well. We told ourselves many times that our son couldn’t have autism because he smiled and made eye contact. This is a common misconception.

Once we got the diagnosis, things started to make sense. And yet the more I learned about autism, the more I saw that it presents itself differently in everyone who has it. All of my preconceived notions regarding autism flew out the window. I used to hear people talking about a family with a child with ASD and I automatically assumed that family was sentenced to a lifelong hardship. I thought, “That poor mother. I’m so glad all of my children are healthy.”

But now that the mother is me and that is my son and this is our family, this is what I want you to know: My child is not any less because he has autism; he is more. Our days and nights might be hard sometimes, but that doesn’t mean I’m miserable or always tired. We don’t shy away from our son’s stimulations or obsessions; we embrace them, and he amazes us every day. We’re not in denial and aren’t ashamed to talk about autism. It’s a part of him and, despite its challenges, a pretty amazing part of him.

Anyone who’s been around Evan for a small amount of time wouldn’t even know he has autism if we’re having a good day. But make no mistake — years of intervention, therapy and hard work enable him to function as well as he does. After about an hour, it’s obvious that Evan is different. Whether he notices a fly on the outside of the window from three rooms away and runs to talk to it or if he’s rocking and chanting in the doctor’s office to calm himself down, the differences are there. I used to shy away from these differences, but lately I see how much it helps him regulate to rock or jump in public. I would assume onlookers would rather he do that than lay on the floor screaming because he’s overwhelmed by the fluorescent lights or the air conditioner humming. So he rocks and I smile and we go about our day.

While we were going through the process of getting a diagnosis, we happened to watch the movie “Man of Steel.” After watching the following scene, my husband and I looked at each other and we were thinking the exact same thing. Maybe this isn’t a disorder we are dealing with. Maybe our son struggles so much because he has a gift and doesn’t yet know how to reign it in. Maybe for Evan, the world is just too big.

Imagine feeling too much, hearing too much, seeing too much and smelling too much every time you walk into a room. That is life on the spectrum. And as well as he does to cope with it every day, there are days when all of it is just too much. And those are the days we power through.

But most days are full of deep pressure snuggles, tickles and a belly laugh and pure joy when surrounded by the things he loves. He’s far from Rain Man. He has autism, and he is Superman.

This post originally appeared on From the Bowels of Motherhood.

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Why I Was Proud When My Son Yelled That He Was Mad

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Boys who cry can work for Google. Boys who trash computers cannot. I once was at a science conference, and I saw a NASA scientist who had just found out that his project was canceled — a project he’d worked on for years. He was maybe 65 years old, and you know what? He was crying. And I thought, “Good for him.” That’s why he was able to reach retirement age working in a job he loved. ― Temple Grandin

The other day my son, Mareto, was getting frustrated with a toy that wasn’t operating the way he wanted. After trying several times, he threw the toy on the floor with an exasperated growl and yelled, “I get mad sometimes!” It might sound odd, but I was so proud of him in that moment. He not only identified his emotions but was also able to verbally express them to me. It was a huge victory with more room for learning.

I love that Temple Grandin quote because I think she lays it out so perfectly for everyone, not just people with autism. It’s OK to cry. It’s OK to feel sad or angry or frightened or excited or nervous or happy. Emotions aren’t wrong, even negative emotions. But in our culture we tend to encourage shoving the negative emotions down and ignoring them. We tell our toddlers not to cry or whine or be afraid. We pretend our feelings aren’t hurt when we sit on the bench the entire game. Or, worse, we blame other people and refuse to face our feelings.

Working on emotions — how to identify them and how to respond to them — is a constant exercise in our home. My son used to have to emotional reaction to everything — extreme joy or extreme sadness. He didn’t know how to identify feeling mad, so he just wailed in despair. It was the same reaction for fear, frustration and disappointment. So, over time we’ve taught him how to identify his various feelings, which is a big step for us. But it’s merely the first step, because learning the tools to respond to our emotions is just as important as identifying them.

Two years ago I remember sitting on the kitchen floor to make myself eye level with Mareto. I attempted to hold my own tears in as I tried to calm him down. He’d been violently hitting himself in the face for about ten minutes because he rubbed a little pepper in his eye. Finally I got him to stop and when he collapsed into my arms, we both cried and rocked there for several minutes. Mareto no longer hits himself out of anger, pain or fear. I never want to go back to those days.

Now that Mareto is more verbal, we sing songs (courtesy of Daniel Tiger) and we talk about our emotions and how to act when we feel each one. Instead of throwing toys, we walk away, sometimes roar a little, take a deep breath and count to four. Sometimes Mareto needs to cry, and he knows that’s OK. I always ask him if he needs a hug, and usually he responds with a nod. We draw faces on the chalkboard and practice identifying their emotions and what to do. Some days we get it right and some days we don’t. We’re learning together.

Mareto

I find that the term “differently-abled” applies strongly here. We likely all struggle to deal with our emotions in a healthy way. Mareto tends to physically overreact to his feelings, and I try to stuff mine deep inside and pretend they don’t exist. I tell my daughter not to be afraid before I remember that fear is a perfectly normal, healthy reaction. Instead of insisting she shouldn’t be afraid, I ought to be teaching her what to do when she feels scared.

In working through emotions with my children I’m reminded that it’s OK to cry and be sad sometimes. Like I sing to them, “little by little, you’ll feel better again.” It’s OK to have fears, but I still have to board the plane. One foot in front of the other, I can’t let my fear control my life. When a rude email makes me angry, I can’t fly off the handle or rant on Facebook. I need to step away (roar privately), take a deep breath and take quite a bit longer than four seconds to gain perspective. That’s why we’re learning together. Because children (special needs or not) and adults could all use some help in this area.

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This post originally appeared on www.laurencasper.com.

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New App May Help Children With Autism Get Better at This Crucial Skill

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Some people with autism struggle to make and maintain eye-contact. This can make it more difficult to connect with those around them and to accurately read people’s emotions and facial expressions.

To help combat this problem, Samsung and a team of scientists developed an interactive camera app called Look At Me.

In a study, 20 children trained with the Look At Me app every day for eight weeks and saw an improvement in ability to make eye-contact and identify social cues, according to the video below.

A team of clinical psychologists, cognitive psychologists, and psychiatrists developed the app curriculum, according to Samsung’s website. Look At Me helps keep children motivated and interested through a points system, themed missions and various sound and visual effects. Each special mission in the app requires interaction between parents and their children to encourage social situations and positive relationships.

The Look At Me app is currently available through Google Play.

Watch the video below for more information on this new app:

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Why My Son's Long Fingernails Are a Huge Reason to Celebrate

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adult hand holding son's hand

My son’s fingernails are a little long. Mental note: Trim them during bath time tonight.

But wait. I haven’t trimmed his nails in a long time. I haven’t needed to — he’s been chewing them himself. In fact, he was even chewing his toenails (flexible little bugger).

Anxiety.

The past couple of years brought a lot of it, and along with it came things like head-banging, shirt-chewing, licking (everything in sight!) and nail-biting.

Most of the more obvious signs have abated since he’s settled into his new school with its smaller, quieter classes.

And now the nail biting is apparently gone.

So tonight I’ll trim those little nails, and I’ll picture the anxiety falling away with them. And I’ll remind myself that progress isn’t usually measured in big leaps and bounds, but in victories as small as overgrown fingernails.

This post originally appeared on ASDDad.com.

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Some of the Best Advice Our Pediatrician Gave Us Was for Me – Not My Kids

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If I could go back in time and talk to myself on the day we got Zoey’s diagnosis… what would I have told myself?

Everything has just happened so fast!

She had her 18 month check up in May, her early intervention evaluation in June, and she was diagnosed in August. So much, so fast!

I’m not trained; I have no idea what I’m doing and many times I’ve said, “I’m just winging it!” I’m a wife and a mom. I try to have nightly dinners ready or almost ready as soon as my husband walks in the door. My house is always clean because my other daughter has allergies that have given her severe eczema and asthma. I try to balance it all… daily therapies with Zooey, quality time with both of my children, cleaning, cooking. So where do I fit in?

Good question.

My husband and I were approved for respite care, and we’ve been out twice without the kids — each time I felt guilty for leaving them. I know, I know, I’m working on that.

But that’s still not just me time. I admit, I don’t have it. I never scheduled that into all of this. I’ve been working so hard to make sure my husband and my children are OK and happy, that I lost myself along the way.

So, I’m going to tell you what the girls’ pediatrician told me just a few nights ago. (How appropriate to be told something like this on New Years Eve!)

We were talking about my one daughter’s eczema flare up and my other daughter’s eating and sleeping habits, and the doctor stopped me and said, “You need to take care of you, too, you know. You are doing everything for these girls and you won’t be able to keep doing everything if you don’t take care of yourself first.”

I explained that I just wanted to be doing everything I possibly could for my children and that I was scared that I’m not doing it right.

She then said “You are doing it right and you are doing everything you can for them… but you need to do something for you too.”

As always, we finished our conversation with her telling me, “We will get through this!”

And then she finished by giving me a much needed pep talk.

“Look how early you got Zoey diagnosed; most kids don’t get diagnosed that early. And we will get A’s eczema flare up under control, and we will just keep on working the therapies with Zoey.”

We said “Happy New Year” to each other, and we hung up.

After I got off the phone, I let out the biggest sigh of relief; I felt as if I was finally given permission to do something for myself.

So, what would I say to myself on the day we got Zoey’s diagnosis?

“It’s OK; everything is going to be OK — not perfect like your brain thinks everything needs to be — so tell yourself to calm down and take a break. Don’t push yourself so hard and too fast that you lose yourself and who you are. Yes, you are still a wife and a mother, but you’re still you, too; don’t leave yourself out. And by the way, you got this!”

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Follow this journey on the Facebook page Life With Zoey.

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

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