My son Stalen was diagnosed on the autism spectrum when he was 22 months old. He is now almost 6 and non-verbal. He is also amazing!

Here are 5 things that I’ve learned from this journey that I want to share:

1. Autism is neurological. It is not physical or intellectual. There is no look to being autistic. Autistic individuals are quite intelligent and capable. They just see the world differently than we do.

2. There is no right or wrong way to perform a task, or reach a desired goal or outcome. Instead, there are many ways. My son may communicate differently than you with the support of a device but he is just as capable. He may also require additional supports but that does not affect his worth or value as a human being. If nothing else, it shows his immeasurable determination and fight, please don’t try to stand in front of that.

3. My son wants to be accepted, loved, and included just like everyone else. He wants to be active and involved in the community free from judgment and discrimination. He needs to be himself, free from consequence. Please don’t invite him to the table and expect him to be like everyone else.

4. Meltdowns are not tantrums. Meltdowns are not a sign of always getting one’s way. Meltdowns are hard moments, signs of an individual trying to cope with an overwhelming world. Please be kind. Please don’t stare. Please don’t judge what you may not understand.

5. Autism is just one of the many pieces that contribute to the make-up of my amazing son. It does not solely define him as a person or define his life. There is no formula for a life well-lived.

Every day we choose to define our lives through embracing differences, kindness, understanding, unconditional love, adventure, laughter, hope and faith.

We share our story to inspire, educate and make this world a better place for not just Stalen but for so many others as well.

I am a proud wife, ASD Mom, Step-Mom. At 21 months, my son was diagnosed with autism spectrum disorder. He is 5 years old and non-verbal. I have become a full-time stay-at-home mom. I am 1000% focused on raising autism awareness and helping my son live a full and fun life. 

May 29, 2019 will be a day I remember forever. We had to get up extra early due to river flooding and the possibility of the highway closing. We were afraid we would have to take back roads to get to Children’s for Graham’s Autism Evaluation. Luckily the highway was open so our traveling was very easy.

We arrived super early at the clinic. We sat in the car and watched movies and listened to music waiting for time to go check-in. My feelings were everywhere, I thought I was prepared for what the outcome would be. I mean I was the one who pushed to get Graham tested. For me to get that “official” diagnosis. To have it official for those who doubted my mother instinct. For those who I felt were questioning me or interrogating me. To have it official so I could tell them to shut up. I didn’t think of it as once we had a diagnosis, my son would be “labeled” for life.

We enter the clinic to check in then waited till they called us back. I hear “Graham Mills” and my heart started pounding. They took his measurements, then we followed them to a room with toys and a chair where they would perform his evaluation. He clung to me, terrified. It took so much for them to get the slightest interaction out of him. We were asked question after question. They also looked at his Speech, Occupational, Physical, and Developmental evaluations from his developmental preschool.

As they finished we were taken to an exam room while they calculated the evaluation. We sat and we waited and waited until the psychologist and speech pathologist finally reappeared. Confirming what my maternal instinct was telling me. My son was in fact autistic. They handed us a stack full of handouts. I sat there trying to understand everything they were giving us. I wondered what level he fell on the spectrum? I had heard of levels 1, 2, and 3. What level was my son? They seemed so confused when I asked that question. The only thing they could tell me was the test shows he is severely autistic and is considered nonverbal. They then left the room and we waited for our Developmental Pediatrician to come and speak with us. When she entered the room she handed us even more pamphlets. Also suggesting we sign him up for ABA therapy. It was then time to leave.

As we got to the car all I could do was sit and cry, saying “I wasn’t crazy”. So many family members who we reached out to for support but instead were asked question after question. Asking us why we thought he was autistic or what does the doctor see that leads them to believe he’s on the spectrum.

I then wondered would my child ever become verbal? Would I ever get to hear “I love you mommy”? I was a mess and just ready to get home. I wanted to process everything in the privacy of my own home.

Finally home and as we get inside I thought ok now time to call family and update on what we were informed. But every phone call it was like I was hearing it for the first time, my son was just diagnosed with autism. I then tried to read through the pamphlets given to us full of “resources” to see what else I needed to do. After that, I was done! I put everything away and just cuddled my son.

The next day I got up and started registering for all the websites we were given to “help” us. Requesting the free materials they had to send us. I then called about ABA therapy. They explained he would be put on a waitlist and we would have to wait for a spot to open. It usually takes six months or longer. Once a spot opened they would send a therapist to our house 20-30 hours a week. This would be in addition to attending school Monday through Friday. He was only two! My mind started thinking, when would he just get to be a kid?! When would we have family time just us three? So we decided not to apply for ABA therapy. We just continued with all the services we were already receiving for the time being, taking one day at a time.

This post originally appeared on Guiding Graham’s Way.

I'm a wife and a mom. I have a three year old son. I spend my time advocating for special needs children, bringing awareness and acceptance to all. My son was diagnosed with severe autism at age two. He is my life. 

It’s not that different. I know it seems that way from an outside eye, but it’s not. Raising a non-verbal child with autism may appear abnormal to others. In our house, though, it’s the most normal thing in the world.

I get it. There was once a time when I was raising my daughter and my son hadn’t yet entered my life. I know how I saw families raising similar children to the boy who would eventually join us. I remember pity and misunderstanding. In my mind, those in the position that I would unknowingly one day be in myself had been doomed to an incredibly difficult life.

When Lucas was born and eventually diagnosed, that incredibly difficult life never materialized. Sure, raising my non-verbal son is hard at times. Then again, raising my very-verbal daughter is hard at times. If you’re a parent to any child, on or off the spectrum, feeling that another parent has it hard and you don’t is a big assumption. To be completely frank, if you’re a parent and you don’t think that it veers into difficult territory now and again, you’re doing it wrong.

There are so many reasons why having a special needs child in my home isn’t some daily cause of depression. For starters, he’s great. My kid is great. He’s sweet and kind without any overly selfish or aggressive tendencies. Ironically, I credit a lot of that to his autism. His loves and enjoyments are for his own satisfaction. He doesn’t get joy in insulting others or fighting for his own things. He just goes with the flow. After Autism Awareness comes Autism Acceptance. In our house, we’re up to Autism Appreciation.

Then there’s the fact that normal is as normal does. This has always been our life and, to us, it’s normal. We have long searched for ways to better communicate with him. Thanks to picture boards and communication devices, we’ve been able to. I know when he wants pizza. I know when he wants to watch Raffi. We’ve unlocked many of the same doors parents with neurotypical children opened. It just took us a bit longer and the doors we found were partially hidden. 

The biggest reason it’s not so strange for my daughter and me to have a non-verbal child with autism in our house is that it’s not so strange to have a non-verbal child with autism in your house. It sounds basic, but it’s true. I’ve learned that the unique ways my son sees the world are like how the rest of us see it.

If he returns home after a long day of school and the television goes on with his favorite show, he begins cheering. Clapping and yelping with delight, my 10-year-old little man dances around the den; sporadically stopping to tap my chest with an expression that says, “Yo! Look! My show is on!” It’s adorable.

It’s also exactly what I want to do when, after a long day, I return home and my favorite show comes on. Who doesn’t want to jump around cheering? Who doesn’t want to tap everyone in the room so they see? In many ways, this action is exactly the one I, and many others, would take if it wasn’t for these darn social walls many of us have built since childhood.

He repeats sounds and movements that he enjoys. They call this “stimming.” We all do that too. In the case of many, that stim is a song “stuck in your head” or funny-sounding name. We click our pens and tap our fingers. People stim. So does my son. It ain’t no big thing.

Sure, there are some things he does that aren’t connected to me but, as paradoxical as that sounds, that’s actually another similarity. All of us have unique characteristics that no one else in our vicinity can share. We have quirks, habits, and personality traits that are one in a million. He does and I’d like to hope I do. We’re all special. Mr. Rogers said so.

At the end of the day, my kid is a kid. Autism might be a part of his personality, but it’s not his entire being. He’s his own person and that’s why we love him. The old saying might be that “if you meet one person with autism, you’ve met one person with autism.” But the better saying would be, if you meet one person, you’ve met one person. It doesn’t get any truer than that.

Sometimes you just have to love your way through.

My son is 16. He is semi-verbal on the autism spectrum. He was diagnosed as severe. Sometimes he can speak a little. Sometimes he can’t. Sometimes he has good days. Sometimes he does not. There are hopeful moments. Like this year he is starting to trace letters for the first time ever! A huge milestone. We celebrate those achievements.

Once in a while, I send him messages from my phone and he sends me a sweet word back. Other times there’s silence. We are grateful for the times he has some language.

Sometimes it’s hard, like really hard, the hardest of hards and it hurts my heart and makes it so heavy. I worry for the future when we’re gone. Who will take over? Who will love him as much as I do but be able to bear this all too? Sometimes it’s confusing. Like when he cries and we don’t know why. Is he in pain? Is he sick? Is he just sad? He can’t tell us. We just guess and love our way through it all.

Sometimes he seems so capable and we’re like, ‘We got this! It’s not so hard after all!’ Then he has regressions. We watch as he slowly loses a skill that he worked so incredibly hard at. It just slips away. Sometimes it comes back. Other times we have to start from square one.

We change bedding almost every day. Sometimes, we need to change clothes during the day too. Sixteen years in. You can’t really call it ‘potty training’ anymore can you? It’s not about the laundry. It’s the setbacks after working so hard to overcome obstacles and difficulties. It’s feeling like you finally made it out of the baby stages only to go back again. It’s the regressions without explanations or reasons. It’s the constant ‘why’ without answers. It’s the starting over again and again. It’s going backward when everyone else seems to be going forward. Sometimes it’s everything at once. Beautiful, heartbreaking, hard work, celebrations, hitting milestones, regressions, starting over. It’s a constant roller coaster of emotions. But the one constant that will never change is our enormous love. A love so strong it carries us through.

This post originally appeared on https://www.facebook.com/theautismride.
Feature image via iStock

Hi! My name is Laura and I'm a mom of two beautiful kids in Vancouver, Canada. I write a blog on Facebook called The Autism Ride, all about the ups and downs in life with our teenaged son on the spectrum.

Like most four-year-olds, my granddaughter, Alma,” LOOOOVESSSS“ stickers! She has lots of sticker books that provoke limitless conversations and long periods of play.

From vehicles and outer space to ballerinas, unicorns, and various animals, these collections provide her with hours of fun. And in addition to being very entertaining, stickers are loaded with learning.

Discussions about her little stickies increase vocabulary and hone her verbal skills as she describes what they are and what they are doing. Using these stickers also develops excellent visual discrimination as well as sorting and categorization skills. Moving the stickers and placing them in new locations requires dexterity and improves fine motor skills, especially the important “pincer grasp” of thumb and pointer. All of the above are necessary skills for learning to read and write.

When Alma first came across the “pinata” sticker, she had never heard that word before. After learning what a pinata is and where you might find it, she set about to draw the picture above. Not only did she understand the meaning of a new word, but her imagination was sparked to create a scene complete with all the ingredients for a wonderful birthday celebration for her ladybug stuffy…presents, balloons, and yes, a piñata!

The next time you are considering a gift for a member of the Pre-K or kindergarten set, check out a sticker collection—they entertain and educate!

 

I am a parent and grandparent with over four decades of experience in early childhood education. I share my passion, wisdom and experience, with parents and the people who care for and about children at Little Folks Big Questions, where we're out to answer the questions parents face in today's world.

 

teen with backpack alone

photo: Jesús Rodríguez via Unsplash

The month of April is notoriously known for bringing awareness to autism. I am a huge proponent of using this monthly platform to educate about the sad realities for autistic adults and the overwhelming need for autism acceptance and inclusion.

All parents have hopes and dreams for their children. My plans and expectations for Skyler’s life began before he was even born.

Would he be a star athlete, high achieving student always on the honor roll, musically inclined, or even better, an exceptional friend to everyone he meets.

Of course, I daydreamed about Skyler’s career path too. Perhaps he’d love the law like his mother and become an attorney. Maybe he’d find true joy being an engineer, doctor, contractor or salesman.

As his name reveals, and I’d always say, “Sky’s the limit for my boy.”

Six months into parenting, assuming I was nailing it like a pro, imagine the shock and confusion I felt hearing that my beautiful son had autism.

Immediately following the diagnosis, I received very limited information because “much is still unknown about the cause, treatment options, financial support available and future prognosis for those with ASD.”  Not to mention, each child with autism is completely unique, so each family will travel a different path along their journey.

As I was sent on my way with a few generic pamphlets and a bill for the office visit, I was forced to dramatically shift from everything I thought I knew about parenting and had to accept my new reality.

I thought, “He’s only three. If I remain steadfast on getting him into every therapy and early intervention I can find, surely, he will be afforded every chance to experience the same things as his peers when the time comes—employment, self-advocacy and independent living.”

I knew autism would impact the pace of his development but never did I give up on preparing Skyler for the incredible future that he deserved.

I always assumed I had plenty of time.

And just like that, in the blink of an eye, Skyler turns 18-years-old next week. Believe me, when I tell you, I’m still in complete disbelief. I’m not ready…I need more time.

I desperately try not to dwell on the harsh realities of life for a non-verbal, severely autistic adult. I always assumed that, by the time Skyler was an adult, things would have drastically improved.

Sadly, the old stigmas still exist.

It’s often assumed that upon turning the page from childhood to adulthood, all learning potential has stopped and therefore, the need for continued support, programs, funding and educational resources is a moot point.

Autism is not something a person outgrows nor is there a magic age where new skills and progress are no longer achievable.

Acceptance and coming to terms with an uncertain adult future for Skyler has remained the hardest concept for me to grasp and keeps me awake at night.

The fact is, not all autistic adults are alike. Some talk, some don’t. Some drive, some don’t. Some can advocate for themselves, others cannot.

As Skyler officially becomes an adult, I feel as though I’m back in that medical office receiving a second autism diagnosis—but this time, there’s not a single pamphlet on how to navigate adulthood within a system that’s broken. I’m frightened and angrier knowing that Skyler is now among the older autistic population that is forgotten about and disregarded.

According to the CDC, as of April 2020, an estimated 5.4 million adults in the United States have autism.

Sadly, the federal requirement for providing supportive services in adulthood does not exist! The avoidance and refusal to address this issue, at both state and federal levels, which affects a rapidly growing population of adults on the spectrum, is a travesty.

For families like mine, who support a loved one with autism, our daily fight advocating for services, resources and equality lasts for the entirety of our child’s life and likely beyond my own lifetime.

While I appreciate the demonstration of solidarity as the world “lights up blue” on Apr. 2nd for World Autism Awareness Day, I can’t help but think, what we truly need instead is acknowledgment that the opportunities for our adults on the spectrum to thrive in this country are lacking and we need action taken.

It’s critical that entire communities everywhere stand together and demand assistance, support and change for all autistics—not just for those under the age of 21.

The Autism Society of America recognizes that the prevalence of autism in the United States has risen from 1 in 125 children in 2010 to 1 in 59 in 2020!

Clearly, this rapid increase in newly diagnosed children also translates into a growing adult autistic population.

Therefore, the goal for Autism Acceptance Month should be twofold:

1. To further increase understanding and awareness about autism signs and symptoms.
2. Invest time, energy and funding toward creating community partnerships with businesses and organizations dedicated to building inclusive experiences for all age groups.

So, I encourage you to join me, not just for the month of April but year-round, to #CelebrateDifferences. Let’s use our voices to generate change.

I'm the mom to an 18 year old son with severe autism, a neurotypical teen daughter & have an incredibly supportive husband! I authored a memoir - Welcome to My Life: A Personal Parenting Journey Through Autism & host the podcast Living the Sky Life. Visit my website www.LaurieHellmann.com to learn more about me!

My son Stalen is almost 6 years old and on the autism spectrum. His safety is my priority, always. 

He has no sense of safety or danger. He elopes. He is a runner. He is an opportunist. As soon as he sees an opportunity he bolts. 

When these incidents occur, his strength and speed are superhuman. He has crossed beyond the tree line into the woods on me a couple of times. He has unlocked the door once and gone outside—luckily into our fenced-in backyard. He has bolted across our front lawn with his toes touching the edge of the street just before I could catch him. He has even taken off inside a facility. 

As he gets older, as he gets stronger, as more opportunities surface, the risk increases. 

I’ve been thinking about safety so much lately as Stalen will be going off to school in a few short months. I’m not worried about him performing academically in school, I’m worried about his safety. 

Have you ever lost track of your child, even for a second? You thought they were in one place but they weren’t. You yell their name and there is no answer. You begin searching frantically. You can feel the anxiousness in your every breath and the tight sickening feeling deep in the pit of your stomach. You’re about to erupt in complete utter hysteria. Panic. 

You beg God desperately, pleading, ”Please let my baby be okay. I will do anything.”

There are no words to describe that feeling. 

Just writing this makes me feel sick and my heart beats faster. 

It’s been the greatest challenge of my life to keep my son safe these past six years. There is one rule that I live by: He doesn’t leave the house without me. I am always on. I’m always calculating his next move. This is the life I’ve adapted to, it’s immediate and natural for me to identify the safety risks and exits before I even realize the presence of others in a space. 

My son also wears a Project Lifesaver radio-frequency tracking device, an alert me band that indicates he has non-verbal autism and has two emergency phone numbers. Every year I update and renew his information in the police vulnerable person registry where we live. I also notify our Project Lifesaver team each time we travel, and they issue a travel advisory to authorities in the area that we travel to. 

We avoid large crowds. When we go out I dress him in bright colors so my eyes can find him quickly. 

When we moved to our neighborhood two years ago, at every interaction with neighbors I remind them, “If you see my son outside without me, there’s something wrong—please help.” 

I know we are doing all the right things. But, the problem with safety issues is that something can happen so quickly. 

Despite all the precautions, in one second, in the blink of an eye, my greatest fear could come true. 

I could look down, get distracted, accidentally let go of his hand. He could wriggle away from me. Someone could stop me for directions. My phone could ring. Someone may be in distress and ask me for help. He could get a door open when I go to pee. So many possibilities.

One second. In the blink of an eye.

I’m reminded of the risks and heartache almost every day when a photo shows up on my newsfeed or on my tv. When I look at the face of the autistic person that has eloped and is missing, I think of my son. I think of the close calls and near misses. I think that it easily could be him. I think of the family searching for their baby. I feel their heartache every single time. I think of that one second, blink of an eye, that may have changed their lives forever. 

Like so many others, there is nothing I wouldn’t do to keep my son safe. I just hope and pray that what I am doing is enough.

This post originally appeared on Stalen’s Way Facebook.

I am a proud wife, ASD Mom, Step-Mom. At 21 months, my son was diagnosed with autism spectrum disorder. He is 5 years old and non-verbal. I have become a full-time stay-at-home mom. I am 1000% focused on raising autism awareness and helping my son live a full and fun life. 

Does your kiddo need to dig deep into the heavy lit to build their language skills? As it turns out, what may seem like fun fiction may help readers to develop their verbal abilities.

According to a new study from Concordia University, people who read fiction may have better language skills than those who don’t choose this genre. More specifically, people who read any type of fiction may have better language skills—and this even includes sappy sagas and epic tween/teen supernatural romances.

photo: Daria Shevtsova via Pexels

The study, which was published in the journal Reading and Writing, found that people who enjoyed reading fiction for leisure scored higher on language tests than those who only read to access specific types of information. Researcher Sandra Martin-Chang, professor of education in the Faculty of Arts and Science, said, “It’s always very positive and heartening to give people permission to delve into the series that they like.”

The study used a scale called the Predictors of Leisure Reading to better understand how reading behaviors predicted language skills in 200 undergrad students. After gathering data using the scale and via SAT-like language tests, the researchers found positive attitudes (about reading), enjoyment and deeply established interests were more often associated with exposure to fiction and were more likely to predict better verbal abilities.

—Erica Loop

 

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My son Kanen is almost 3 years old, and from the first time I ever put a TV show on for him, well, he insisted it had to be a Disney movie. For the better part of the early years, I just thought he had remarkable taste for things. And I was delighted I wasn’t like the other mom’s suffering as they listened to Baby Shark and Cocomelon all day long.

It wasn’t until about six months after his second birthday that I understood why he was so particular about what he preferred to watch. Autism. See when you have a child on the Autism Spectrum, who is also non-verbal, the early years are quieter than what I figure they might be for others. And If I’m being honest, I’m not usually the type of mom who plops down with my child during screen time. I use that as the time to clean my house, wash dishes, do laundry. You know mom things.

But one lazy morning I decided to watch the Good Dinosaur with Kanen for the first time. It took me a few minutes into the movie to realize the dinosaur talked, but the young boy never did. By this time I was captivated. It hit home. And these are the 3 things a Disney movie of a non-verbal child and a talking dinosaur taught me.

1. “Love Needs No Words.” 
This is a quote I’ve heard very often throughout this journey. It’s true, love doesn’t. My child could speak every word in the dictionary, or none at all and I will always love him for exactly who he is. Now I know what you might be thinking…Of course, I will! But will others? The answer is yes. I can’t tell you when or where, unfortunately, I don’t have a crystal ball for that. But I’ve heard stories from the moms in this journey that talk about their amazing non-verbal children making friends. So I believe it’s going to happen one day for my child and yours too. Communication goes far beyond verbal words. Friendships do too.

2. Look Out for Those Different Than You. 
Even in the land before time, a young dinosaur like Arlo knew to look out for another that was unlike him. Another who had no words. Another who had no way of defending or protecting himself. Arlo had found a sense of pride to keep him safe because he knew he could communicate with others around him the way his friend couldn’t. A dinosaur showed me not everyone in life is living in a “doggy-dog-dog” world. Thank you.

3. Never Give Up.
Cliche huh? No, but really….Never give up. Even when life gets tough. I watched for nearly two hours a dinosaur never give up on his life or his non-verbal friend’s life. I’ve only seen that type of perseverance in my son and those like him. I hope one day they find a friend like Arlo. Maybe this was only a fictional Disney Pixar movie. Maybe Kanen has just taught me to look at life through a new lens. Regardless. I’m thankful for both.

Samira is a 25 year old single mom to a 2 year old son Kanen Arley. Her son Kanen was diagnosed with severe non-verbal autism in September of 2020, which inspired her to start sharing their journey through My Charming Arley on Facebook and Samirasstella on Instagram.