10 Things You Can’t See in This Picture of My Son With Autism

271
271

We have all heard it said that pictures can be deceiving. I’ve thought a lot about this lately. We aimlessly browse through our Facebook newsfeed and see picture after picture of happy moments. I think it would be interesting to see the real picture. Perhaps we would all like each other a little more if we didn’t have the facade of permanent happiness on social media. 

Occasionally, I see a picture of a non-typical family. Their faces are full of smiles, except for the unruly toddler who appears to be possessed by demons. These pictures always make me chuckle. I like the realness of it.

As a parent, I find it quite difficult to capture pictures of my son, Drake, period. My child doesn’t love the camera. Add autism into the mix, and I feel like I need a fancy DSLR camera that takes action pictures.

Some of the greatest pictures I have of Drake were taken by his therapists. However, as stated previously, pictures can be deceiving. I will never post a picture of Drake that would embarrass him one day, but I think there are times others need to know the story behind the picture. In order to educate others and spread awareness, it’s imperative all aspects of autism be explained.

jill.2-001

The picture on the right shows what appears to be a happy little guy holding his “First Day of Preschool” sign. But here are 10 things you can’t see.

1. You can’t see his amazing ABA therapist, Lindsay, working hard to get this picture for me. You see, as an autism parent, I don’t have the luxury of just snapping a picture of Drake looking cute in front of the school building with a huge grin on his face. I had to ask Drake’s therapists to get a picture for me.

2. What you don’t see is the major meltdown that occurred when Drake was asked to hold the sign. You don’t see his therapists trying with all their might to make this kid smile.

3. You don’t see the iPad they eventually had to use (playing the “Kung Fu Panda” trailer) in order to get one brief smile.

4. There is no way for you to see the picture schedule being shown to Drake to prepare him for his big day.

5. You can’t see how anxious I am about this new school year. Just one year ago, I withdrew Drake from a different preschool because he would throw up when we pulled in the parking lot from sheer anxiety.

6. You can’t see how much progress he has made in ABA therapy. It may not work for every child, but it works for mine. He is happy. He loves his therapists, and they love him.

7. In this picture, you can’t see how thankful I am for his therapists. I have no idea where my little guy (or myself) would be without these amazing and selfless individuals.

8. You have no way of knowing he only attended preschool for 30 minutes the first few days to make sure it was a positive experience.

9. You don’t know about the meeting I had with his therapy team about preschool, or that I almost backed out.

10. Nothing about this picture tells you how proud I am that he rocked his first day and every day since then.

You see, pictures are only that — pictures. There is always a story behind them. Our story can be complicated, worrisome and tiring, but it’s ours. Despite all of the challenging stuff that can’t be seen in a picture, I am thankful.

Follow this journey on Walking With Drake.

271
271

RELATED VIDEOS

TOPICS
, Contributor list
JOIN THE CONVERSATION

Sesame Street Debuts Character With Autism

14
14

“Sesame Street” has always been the most inclusive place in town.

On Wednesday, the company launched “Sesame Street and Autism: See Amazing in All Children,” an online initiative that will provide resources for viewers on the spectrum, as well as educate the general public about autism. A big part of this is the introduction of Julia, an autistic character who Elmo meets in an online storybook, “We’re Amazing, 1,2,3.

Julia, an autistic character on Sesame Street

 

In the last year, Sesame has held focus groups with special needs educators, parents of children with autism and parents of “typical” kids,” according to “Autism Daddy,” a popular parenting blogger who’s worked at Sesame since 1994 (and recently went public with his real identity.) From these sessions came the three goals of Sesame’s autism initiative.

The first is offering daily routine cards featuring Sesame characters performing everyday tasks like brushing their teeth, going to a restaurant, crossing the street and trying new foods.

Sesame Street's daily routine cards featuring Sesame Street characters

Step two is where we meet Julia, who goes on a playdate with Elmo and Abby and teaches them about autism. The storybook will hopefully act as a tool for children unfamiliar with autism but who may have a neighbor, classmate or friend on the spectrum. In one scene, Abby assumes Julia doesn’t like her because she doesn’t answer her right away.

“Elmo’s daddy told Elmo that Julia has autism,” Elmo explains. “So she does things a little differently.”

Other resources include an animated story from Exceptional Minds, a nonprofit school and working studio for young adults on the autism spectrum; and more videos for kids on the spectrum, their siblings and parents.

The third part of Sesame’s initiative focuses on parents — of kids on the spectrum and of neurotypical kids. Five videos featuring autism parents are now available, and all aimed at adults. Take a look at one below:

For more information Sesame’s autism initiative head here.

Update — Wednesday, Oct.21 3:48 p.m. — Sesame Street sent the following statement to The Mighty, from Dr. Jeanette Betancourt, SVP of US Social Impact, Sesame Workshop:

We created Julia as an illustrated character so kids can see the similarities that all kids share through our narrated storybook experience. Julia was designed for these digital platforms based on the advice that iPads or touch technology are among the most popularly used resources within the autism community. There are no plans currently for Julia to appear on the broadcast version of Sesame Street, however we believe that by working in collaboration with our vast coalition of partners will have greater reach and impact to more precisely reach young children with autism and their families.

We want everyone to know that children with ASD want to play and be included; they want love, friendship, understanding, and support just like any child does.  We also want people to know that there are a wide range of autism behaviors and experiences because we know that if you have seen one child with autism, you have only seen one child with autism.

14
14
JOIN THE CONVERSATION

Part 2! Kids With Autism Turn 'Obsessions' Into Creative Costumes

742
742

Last week we asked our Mighty readers who have autism, or who have a loved one with autism, to share how they’ve turned seemingly quirky “obsessions” into home-run Halloween costumes. Since then, we’ve been overloaded with wildly creative getups. If you haven’t already, check out our first compilation of these awesome costumes here.

Below, you’ll meet 13 more kids with autism who know how to rock being unique.

1. A creeper from “Minecraft”

via Jen

2. A car wash

via Andrea Brillhart

3. A vacuum

via Eric

 4. My Little Pony

via Shari DeCarlo

5. Dr. Octopus from “Spider-Man”

via Lena Kotler-Wallace

6. New Mexico

“I asked if he had a backup choice… without a pause he said, ‘Sure, Wyoming.’ via Sara Starr

7. A butterfly

via Erica J. Thiel

8. Frankie from “Foster’s Home for Imaginary Friends”

via Emma Wozny

9. The TARDIS from “Dr. Who”

via Melodie Vantkruis

10. A (hungry) shark 

via Michelle Skinner

11. A volcano (bonus if your sisters are hula dancers!)

via Nancy Cook

12. Steve Jobs + an iPad

via Denise Mitomi

13. A construction barrel 

via Jen Lovy

Do you or a loved one with autism have a unique Halloween costume you want to show us? Send photos to [email protected] Happy Halloween!

742
742
TOPICS
Listicle,
JOIN THE CONVERSATION

The 3-Step Strategy I Use When My Child Has a Meltdown

567
567

It is loud, frustrating, completely out of control, exhausting and sometimes even scary. A meltdown that sweeps the child as well as everyone and everything in its path is common in children with autism. It is dreaded by many parents as well as the children.

In the early days following my son Ethan’s diagnosis with autism, such meltdowns were a common occurrence. One of the most memorable happened at the largest indoor shopping mall this side of town. It was on a Saturday, in winter, when it seems like the whole world converges at that mall. We were only going to one shop to buy a helmet and then straight back home, just the two of us. We never made it into the shop; he had a meltdown near the door.

I was too absorbed in keeping Ethan safe and out of the way to notice the throngs of shoppers passing by. I did notice, however, the polished, black boots of the mall’s security guards. They were particularly close to our faces seeing as we were on the floor, close and very shiny. I looked at them for a moment, wondering who had summoned them; a concerned or an annoyed shopper?

Meltdowns take a toll on caregivers who often struggle with how to handle them. In the beginning, Ethan’s meltdowns would leave me feeling exhausted and defeated. Since his meltdowns were quite common, I was pretty much always exhausted and defeated. It was only when I developed a strategy for dealing with them that I was able to sail through even his most spectacular meltdowns. This three-part approach transformed both of our lives, and I continue to rely on it:

1. Don’t take it personally.

It’s easy to take a meltdown personally when you’re the one on the receiving end of the glass-shattering screams, punches, kicks and bites. On top of that, you’re also the one tasked with minimizing damage to property, keeping yourself and everyone else safe — including the epicenter of the meltdown, your child. Above all, it is you who is tasked with helping your child regain composure, because when a child with autism is in the middle of a meltdown, they may be unable to regain control on their own.

Yes, you may be the one bearing the brunt of your child’s meltdown, but it really isn’t personal. You just happen to be the closest target; it could have been anyone or anything. Remember that at a certain point the child lost all control and desperately needs to regain control over the enormous force that has taken control of them. They are probably even more terrified than the little kids who are peeping from behind their parents’ tightly clutched legs.

The meltdown is in no way directed at you.

2. Distance yourself from the meltdown.

Allow your mind to take you away from the meltdown to a place of rest, quiet and peace. This can be a real or imaginary place. My escape was always a beach in Tofino, British Columbia, that I had visited during my pregnancy. When you allow your mind to go to that beautiful, peaceful place, you avoid being emotionally and psychologically sucked into the vortex of the meltdown. From that safe distance, you view the meltdown happening near you with detachment, as you would if the child involved was someone else’s. You remain neutral and able to focus on containing the meltdown while remaining relatively unaffected by it. In addition when you detach yourself from the meltdown, your emotions don’t feed into it, and it dies down much faster.

This ability to mentally distance myself has not only helped me deal with meltdowns but also with other difficult situations. Parents of children with special needs are all too familiar with insensitive, judgmental remarks from family, friends and even complete strangers. Often such remarks are uttered while they are already dealing with a meltdown! By distancing myself from thoughtless comments, I am able to hear them but not allow them to affect me. It’s like having my own protective shield.

3. Know it will come to an end.

All meltdowns eventually end when their energy runs out. They are utterly exhausting for the child. Simply knowing that a meltdown has to end keeps you steady and allows you to quickly regain the control that your child has lost.

This summer, my three-step approach to handling meltdowns proved invaluable under extremely stressful conditions. As soon as we boarded the plane for one of our 11-hour flights, my sleep-deprived son had a meltdown. It was our first trip overseas, and the brief rest at the hotel had not been adequate. Even with the judgmental, snide remarks of some of our fellow passengers in the background, I was able to calm him down before we took off and avoided the very real possibility of being asked to disembark. I was thankful for this tried and tested method that had seen me through countless meltdowns before.

Lead photo source: Thinkstock Images

567
567
TOPICS
JOIN THE CONVERSATION

When I Realized Why My Son Melts Down at Home but Not at School

155k
155k

Tonight my son walked through the door from school, and immediately I knew. He didn’t have to say or do anything. I just knew.

Call it mother’s intuition, or call it years and years of practice, but I knew something was wrong. It was the delayed effect. My son has had a tricky day at school. He has held it together for nearly seven hours. Then he walks through the front door, and bam!

He’s somewhere safe and familiar, and he can’t contain the pressure anymore.

*Sign up for The Mighty Newsletter*

It creeps out of every fiber of his being. His face is tense, and he has red cheeks. His body is stiff and awkward. His words are fast and loud, and he’s agitated. He’s hungry, he’s not hungry. He wants a snack but not what’s in the cupboard. So he gets angry and swears because he’s not in control of his body anymore. He wants to say hello to the dogs, but their overexcitement is too much for him, so he’s too rough with them and he gets cross with himself. I ask him how he’s feeling, and it’s like there is a red fog surrounding him. He can’t process what I’m saying. His sisters walk in chatting and laughing. They sound like a crowd of people to him, and he shouts to them to be quiet. They snap back at him as only sisters do, and wham — the volcano explodes. We have liftoff.

Meltdown. There’s no turning back now. It all has to come out.

Then comes the exhaustion — for him and for me. He can’t reflect on it because it’s all just too much. He just needs to recharge now, as do I. It’s so hard for all of us, but I can’t even begin to imagine how it must feel for my son.

As his mom, I know there would have been telltale signs throughout the day. But they’re small clues that can be easily missed, as he would have been largely compliant, so therefore no one would have realized there was any problem. But I know as the day progressed, his complexion would have become paler as the energy sapped out of him with each passing hour.

He may have struggled to eat his lunch due to high anxiety. A nervous giggle would have squeaked out when his teachers tried to speak to him. He would have put his head down on the table during lessons or possibly rocked back and forward on his chair to calm himself down. And as the pressure mounted and the clock ticked toward home time, there may have even been some finger picking and sleeve chewing.

My son shows these signs of stress through his body language and gestures. He can’t always communicate his needs verbally, so they can get missed.

The can be a common challenge facing many children on the autism spectrum. Some children are able to contain their feelings all day at school, with the teacher blissfully unaware there’s a problem. However, the stress hormones are slowly building and building inside. This creates a situation that can put incredible pressure on families — especially if teachers don’t understand or believe what the parents are telling them. So let’s think about it this way for a minute…

Imagine yourself as a bottle of pop. Your ingredients include autism, sensory processing difficulties, ADHD and a hidden speech and language delay. The world’s a confusing place, and your difficulties are largely hidden to the wider world, so not many people understand things from your perspective.

This is your day:

Going to school is just one big worry for you… so give that bottle a shake!

You get to school and your teacher says, “Let’s start a new topic.” What does that mean? … Give it a shake!

You don’t understand what you have to do… shake it up!

You make a mistake… shake, shake, shake!

The lights in class are buzzing, and it’s annoying or painful… shake it a little more!

It’s assembly. You have to sit still while your insides are wiggling and jiggling around… shake it up!

The timetable changes and it’s not math like it should be, it’s now music… and shake again!

The car gets stuck in traffic, and the wrong radio station is on in the car… that’s a few more shakes!

You get home and the lid blows off with the pressure!

That’s the delayed effect. It’s a real thing. The times over the years I’ve felt so confused and isolated when teachers have said to me, “Well, that is a surprise. We don’t see any of that here at school.” Or I’ve heard, “Well, he can behave for me, so maybe you’re being too soft on him.” I spent many a sleepless night wondering if it was me. Was it my parenting? But I am his mom, and my gut instinct is always right. I knew there was something my child was struggling with, and all I had to do was understand what his behavior was telling me. My child explodes at home with me because I’m his safe place. I am predictable and calm, and he can really be himself at home. He is fully accepted at home.

So this tells me there are many things that can be done to reduce this build-up of stress hormones for children like my son — making them feel more safe and accepted for who they are. And that means really embracing their individual needs. Not just trying to fit a round peg into a square hole.

A version of this post originally appeared on Kathybrodie.com. Follow this journey on A Slice of Autism.

We want to hear your story. Become a Mighty contributor here.

155k
155k
TOPICS
JOIN THE CONVERSATION

When Our Untrained Dog Had the Perfect Response to My Son's Meltdown

989
989

I didn’t want a dog, but my son, Brock, who’s on the autism spectrum, sure did. For years it was all I’d hear about every time I asked what he wanted for his birthday or Christmas: “Puppy please.” He’d even jut out his lower lip and make that irresistible puppy face he’s perfected over the years. I was able to resist for many years — until my sister blindsided me with pictures of a puppy she picked up that didn’t have a home. It was like watching those ASPCA commercials and all I was missing was Sarah McLachlan’s music in the background. So of course I had to go and see the little ball of fur, and the rest is history, as they say.

Letty (the puppy) was 12 weeks old when I brought her home. Immediately she formed a bond with Brock, and I definitely wasn’t prepared for the strength of their bond.

A week or so after brining Letty home, Brock had a meltdown, and within a month of her being with us, he had many more. She didn’t seem to pay any attention to them initially — and then she did.

After about five minutes into one of his meltdowns, I noticed out of the corner of my eye that she was doing this slow, army-type crawl toward Brock as he was on the floor. As soon as she was next to me, I held her back, because any type of touching for Brock during a meltdown usually made them worse. She ignored me and started putting her paw on his chest.

Letty the dog lying next to Brock with one paw on him.

I waited with baited breath for him to scream louder,  but it didn’t come. So next she put both paws on his chest, and then she moved over me and laid her upper body across him and just stayed there with her head in the crook of his neck. After five minutes of Letty lie on him, he started to respond by petting her. And then 10 minutes after that, he calmed down. This was the first time a meltdown was done and over with in less than 30 minutes.

Letty the dog lying on Brock.

Being the cynic I am, I thought it was a fluke. There was no way one little puppy could help him this much, especially with no training. But I was proved wrong.

Over the past five months that we’ve had Letty, I’ve been amazed over and over again. She is always by my side helping calm him, and I even caught her pulling his blanket around him tightly after a meltdown because he always falls asleep when it’s over, and apparently she was watching me much more closely than I thought.

Brock and Letty the dog looking out the window.

Letty has also given Brock a strong sense of friendship. He’s come out of his shell more and has been communicating much more articulately with her around.

Brock is also an only child, and Letty has given him something I didn’t even realize he was missing. She has to sit and watch him get on the bus each morning for school, and she will not move until he’s seated on the bus. And she’s always the first one to greet him when he returns from school. She gets on her hind legs and wraps her paws around him.

If I would’ve known a dog could have this much impact on my child, I would’ve brought one home much sooner. But then again, maybe we were really waiting for the perfect match for Brock.

Brock and Letty the dog smiling outdoors. Brock’s wearing a Batman mask and Letty’s wearing a Spider-Man mask.

Follow this journey on It’s Brock’s World We Just Live in It.

989
989
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.