ML Interest Tag: acceptance

The System Is Failing Our Autistic Adults

By Laurie Hellmann

 

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!

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Sesame Street Is Celebrating World Autism Awareness Day in a Special Way

by Karly Wood

Happy World Autism Awareness Day! In honor of this special day, Sesame Workshop is expanding its Sesame Street and Autism: See Amazing in All Children initiative by adding brand new videos and activities.

Julia, a 4-year-old Sesame Street Muppet with autism, is taking center stage in the new videos that will also include a new episode on HBO Max and PBS KIDS. Available for free in English and Spanish on SesameStreet.org/autism, the resources help children and families to cope with changes in routines and other uncertain scenarios.

photo: Sesame Street

The new Julia-centric episode, Match It!, will premier on Apr.8, on HBO Max and PBS KIDS. In addition, parents can find tons of other resources that include:

Sesame Workshop is working to expand the initiative in other ways this month as well. SeaWorld Orlando, Busch Gardens Tampa, Sesame Place Philadelphia and Beaches Resorts will feature physically distanced meet and greets with a Julia walkaround character! Additionally, Glo Pals is introducing light up versions of Julia and Elmo that instantly light up in bright colors when they’re dropped in liquid.

You can visit SesameStreet.org/autism for even more info and resources.

––Karly Wood

 

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To the Mom of a Newly Diagnosed Child as We Approach Autism Awareness Month

By Elizabeth North

It’s nearly April and everywhere you look you will begin to see the famed puzzle piece. Today I just couldn’t shake that weight that comes with the month ahead. In the coming days, you will begin to hear more chatter from parent advocates and self-advocates alike. You’ll see schools pasting signs about “acceptance” and “inclusion.”

You may be lucky enough to have friends that want to know, want to learn, will stand by your side, especially this month. That first Autism Awareness Month, you may want to hear it all. You still may be too raw to hear any of it. You will feel overwhelmed and underwhelmed and you will find moments you want to quit. The day. The month.

You may love the “Light It Up Blue” and you may hate the “Light It Up Blue.” You may fall in love with puzzle pieces and quotes and you may sob seeing puzzle pieces and quotes. Mama, this month is a lot. It’s a lot of good but in the good, sometimes we forget that good can be heavy.

There will be well-meaning supporters who say the wrong things. There will be people you never imagined who will become your best friend. If I could go back to my first April, my first Autism Awareness Month (that is what it was called five years ago), I’d tell myself these three things:

First, you do you. Share when you want to share and hide when you need to reset. Love the representation you love and be the representation you don’t see. Ignore what isn’t part of your story and share your story too because your story matters. Your child is a gift. Your child is unique. For you self-advocates, teach us. We want to listen. We want to learn. As parents, we want to know what our future may hold, how to help our children but do it with kindness, with the knowledge that we’d move mountains not just for the children we are raising but for you.

Second, breathe. It’s coming at you. Hard and fast. You’ll revisit the emotions that come with diagnosis, therapy, IEP’s, education perhaps even adult life. There will symbols and stories, walks and marches. There will be calls to action and it can be overwhelming. Remember, you are not the only parent living this, feeling this. When a child is diagnosed often they say this is a marathon. Scratch that. This is an iron man and while you don’t feel made for it, you were and your being here, as you are, is important. When the month gets heavy, when you’ve seen one too many stories, heard one too many quotes, on those days when you don’t feel strong enough, your tribe will remind you, you have this, you are making strides and you are incredible. So this month more than ever, lean in, find your tribe and allow them to be there.

Third, it’s okay to feel it all. You may feel all the emotions. Joy in the growth. Sadness in the challenges. Hope this is not just awareness but continued acceptance. Remember it’s okay to feel all the emotions because after April, when the ribbons are down and the stories are locked away for another year, you still are on this journey and that kindness, acceptance, and understanding may just be hidden away again until next year.

So to you, new mama, welcome. I want you to know, you are not alone. I want you to know I am here for you after all the quotes, the marches, the stories. I am here for you because in the last five years I have realized that overall more good has come out of this than I could ever imagine. I’ll be here to stand by and celebrate all the good that is yet to come.

I'm a mom of many who is living her best life navigating a busy world full of ups and downs. Managing five kids and one with additional needs I enjoy learning through living and sharing what I know. I can't wait to share our Messy World with you.

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When You Are All Alone, Sitting in the Dark

By Vesna Mitrevska

Photo: Vesna Mitrevska

I’ll sit with you in the dark. Waiting for others to believe you. Waiting for insurance approvals. Waiting for evaluations. Always waiting to hear what you already know.

I’ll sit with you in the dark when you feel alone. When others tell you they’ll pray for you. When they tell you stories of how they know someone who knows someone. When they tell you that God gives special kids to special people. When they tell you, “But they’re so cute” or “They’re so smart” —like it’s a constellation prize.

I’ll sit with you in the dark when friends and family slowly drop off when things get harder. They’re “There for you” until they aren’t. Because the reality is too hard for them to grasp so it becomes only your burden to bear.

I’ll sit with you in the dark when you’re so tired of speaking and not being heard. When you repeat yourself into a void and then you’re told “You never said that.” When you cry yourself to sleep every night and no one even notices—I do, because I am you.

I’ll sit with you in the dark when other’s don’t know how dark the dark can be. When you pretend everything is fine when it’s far from it. When you fight for services. When you fight the school system. When you fight your own family who refuse to see things for what they actually are.

I’ll sit with you in the dark when the cuteness starts to wear off. When things that were shrugged off as, “All kids do that” and become, “Why does your kid do that?” I’ll sit with you in the dark when you start to drown yourself in wine and food and try to sleep as much as you can so you don’t have to think.

I know this happens. I know because it all happened to me, and I don’t want it to happen to anyone else. I’ll sit with you in the dark when the sadness of, “Why my kid?” slowly turns to the anger of, “Why not my kid?” and you realize how important inclusion and acceptance are.

You are not alone, ever, even in the dark.

 

Vesna is a 37 year old single mom to two little autistic boys, a pharmacist, and likes to share her love of make up in her spare time. 

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A Better Story Starts Here Contest Rules

by Kenzie Kramer
Partner Content

NO PURCHASE NECESSARY. VOID WHERE PROHIBITED.

HOW TO ENTER: The Contest (“Contest”) will run from 3/22/2021 at 12:00 a.m. PST to 3/31/2021 at 11:59 p.m. PST and will run on the Red Tricycle website. Any entries received after the contest has closed will not be included in the Contest. In order to enter the contest, participants are required to do the following:

  • Submit a short description of a mom who is creating a better story for themselves, their family or their community.
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Only online entries will be eligible. No print submissions will be accepted for entry into this Contest. Any use of automated or programmed methods of effecting entry is prohibited.

ELIGIBILITY: Open to legal residents of the fifty (50) United States and District of Columbia who are 18 years of age or older at time of entry. Employees or Sponsor, their affiliates, subsidiaries, advertising and promotion agencies and their immediate family members and/or those living in the same household of each are not eligible to win the prize package.

SPONSOR: This Contest is sponsored by Once Upon a Farm (“Sponsor”). Sponsor reserves the right to cancel the Contest at any time and substitute another promotion in its place. The Sponsor is deemed to be the party providing the prize package for this Contest. The Sponsor is responsible for prize fulfillment within 30 days of the winner providing requested mailing information. If winner does not receive prize within 45 days, the winner is to email Red Tricycle for follow up (kenzie@tinybeans.go-vip.net). The winner forgoes any prizes after 180 days without follow up.

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Weekly winners will be selected from submissions received between the following dates: March 22, 20201 to March 31, 2021.

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Before We Knew Autism

By Jaime Ramos

Photo: Jaime Ramos

Pictures, pictures, and more pictures. I’ve been taking pictures since I was nine and my parents bought me a camera for my birthday. This was before smartphones and the craze of capturing every moment.

I love it. 

Sometimes after the exhausting bedtime routine I lay in bed and stare at pictures of my kids. Yes, the kids that I’m constantly with, the ones I just prayed would fall asleep and leave me alone.

Suddenly in the quiet and dark of my room, I miss them.

When I look at baby pictures of my son Johnny, who is five and on the autism spectrum, it’s a conflicting feeling that pulls at my heart.

I think about how cute and little he was, how I miss having a little baby, but it also feels like another time. The time before knowing something was different. Before knowing autism.

Back then there was so much hope. So many possibilities.

Life seemed so much more certain and typical. I feel like that now our whole world has shrunk in so many ways. Less people, less space, less certainty.

These pictures remind me of a simpler time, before I realized that those fussy nights would continue so much longer than they told us. Before he went from responding to his name some of the time to never responding. That the couple of words he had would come and go. Our world would become a constant back and forth of progression and regression. Back then I had no clue I’d be filling out hundreds of professional forms that refer to my child’s behavior as “odd” and “strange.”

I had no expectation of myself crying on the way home from soccer practice, nursery, and family events because my child would not participate. Sometimes he would scream and cry or hide in a corner the entire time.

I didn’t know the plans we had to do every sport and activity would turn into therapies and explanations. Explanations of him, us, autism. 

Although, now that we are slowly turning the corner of acceptance I see more.

I can see that before I did not know how much I would learn. How it would make us better parents and people. I would have never known how different I would become. My patience, love, and acceptance of others has grown tenfold. All thanks to Johnny.

I did not know that our wins in life would mean little to others but the world to us. The first time Johnny said “Hi mom” so casually at four, I cried. The first time he jumped with joy about something, my heart burst. The day he finally got potty trained I felt the most relief I probably ever will. His smile could change the world. 

Before autism, I did know how much larger my heart would become and how full it could be. 

Most days are hard. There are meltdowns, frustrations, isolation, worry, and confusion. Then there are moments of amazing. The moments that keep us going. The little wins carry us through the weeks and months. Before autism, I did not know that was possible.

This post originally appeared on Johnnysspirit.com.

Jaime Ramos, is a mom from Colorado. She's married to Isaac and has two kids, Amelie and Jesse. Jesse, her Johnny, is on the Autism Spectrum. She went to school to be a filmmaker, but now spends her days mainly as a stay at home mom.

 

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My Son Is Teaching Me to Love My Flaws

By Jaime Ramos

Photo: Jaime Ramos Via johnnysspiri

I use the word “obsessed” a lot, especially when it comes to my five-year-old autistic son, Johnny. He really gets into certain toys, songs, and shows. It annoys my husband that I use the word so much. “He’s not obsessed, he just likes it” and to his credit, the interest comes and goes often even though he does fixate for a short time. 

The one thing—not even my husband can den—is that Johnny is obsessed with my stomach. The kid loves it. It can drive me insane, but something about it fascinates and comforts him. Sometimes it is in a silly, squishing my flab, way; other times it is him resting his usually restless head on it, or hiding his face in it when he is anxious or nervous in public.

I’m sure it stems from the hours of skin to skin as a baby, the comfort of laying on mommy as a toddler, and all the encouragement to touch and love on it when it held his little sister. 

The older he gets the more we work on the appropriateness of it. He’s still little, but attempting to lift up my shirt at home or grab my tummy in public isn’t going to work. He has to learn to respect my space and body. The moment I lie down when he’s around he goes straight for it. You will hear “no belly” often, in our home.

The thing is, sometimes I look at my belly in the mirror after the shower and think I feel ashamed of it. My 30’s belly is much different than the almost flat stomach from my 20’s. My workouts come and go, as do my healthy eating habits. I try but I’m also a tired and exhausted mom who has been through many ups and downs. 

So, I won’t lie, he’s not catching rock hard abs there, It’s surely a comfortable and soft pillow. 

The neat thing is he doesn’t see it as fat, or unhealthy, or shame, he simply sees it as mom, comfort, and safety.

No judgment, just love. 

My son loves a part of me that I find hard to, and that changes the way I see it. Don’t worry I’m not using it as an excuse to stay unhealthy or out of shape, but it is a reminder of my son’s beautiful, unconditional acceptance and love.

So when I stand in the mirror looking at that belly, I can say it’s the way it is because I carried two beautiful children in it and because I’m a special needs mom who has had some really hard days. It’s not perfect because there is not time for perfection in my life right now, maybe there never will be. But I am doing my best and that’s okay. 

I’m loved and accepted no matter what, by my son.

Johnny is different. The amazing thing about him is that he does not judge. He doesn’t look for the flaws in others or make fun of others, instead, he seeks. Seeks what makes him happy, and what he loves. 

There is something undeniably beautiful in that and I’m grateful for that unconditional love and for someone who truly loves my flaws.

This post originally appeared on Johnnysspirit.com.

Jaime Ramos, is a mom from Colorado. She's married to Isaac and has two kids, Amelie and Jesse. Jesse, her Johnny, is on the Autism Spectrum. She went to school to be a filmmaker, but now spends her days mainly as a stay at home mom.

 

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Should We Continue to Celebrate Dr. Seuss?

By Gay Cioffi

 

In the past, March 2nd, the birthday of Theodor Seuss Geisel, well known as a picture book author, Dr. Seuss, was a cause for celebration. During my years as the Director of the Little Folks Nursery School in Washington, DC, on this day, children were asked to bring in their favorite Dr. Seuss books for sharing and reading aloud. Children and teachers made red and white striped “Cat in the Hat” hats. And to add to the festivities, I took the opportunity to cook up some ham and eggs —I mean green eggs and ham—to everyone’s delight!

While many were shocked by the announcement yesterday to cease publication of six of Mr. Geisel’s books, I believe that we have even more to celebrate, with this decision by Dr. Seuss Enterprise, the keeper of his legacy. Some may cry “cancel culture” at the news of this choice. But, I, for one, applaud it and appreciate the greater awareness brought to his past instances of racial stereotyping.

How can we be more sensitive to this type of transgression if we don’t point it out when we see it? In Theodor Geisel’s case, racist and anti-semitic depictions can be found in drawings from his college days, his early cartoons, and long before he became a successful children’s book author. When delving into his early work, there is no mistaking his ugly and hateful depiction of Blacks, Asians, and Jews; it is indefensible. More subtle insulting imagery of non-whites in his children’s picture books resulted in the decision to discontinue their publication.

Like all humans, artists are flawed…and full of contradictions. Still, we can “call out” their harmful mistakes while acknowledging their positive contributions. And moving forward, we all can learn from and make a more significant effort to represent all book characters with dignity and respect while acknowledging when someone falls short.

In Mr. Geisel’s case, his later attempts to instill tolerance, diversity, and compromise in books such as The Sneetches and Other Stories, published in the late fifties, can be embraced and appreciated. In The Lorax, published in 1971, readers are introduced to environmentalism and the importance of taking care of our earth. So, like Dr. Seuss himself, who grew and changed with the times, our consciousness can be broadened as well, if we welcome an honest look at the expression of others. We can take the good, leave the bad, or at least acknowledge how wrong and damaging degrading representation can be.

As an educator, parent, grandparent, and human, I know that representation is important. When children do not see themselves in books or see depictions that are negative, no matter how subtle, true damage is done. When they see others represented in a negative way, those thoughts and feelings are internalized. We all have a responsibility to think critically and call out such representation.

While I approach the idea of censorship with caution and a genuine concern for free speech and the exchange of ideas, I don’t see how the discontinuation of these six books affects either free speech or an exchange of ideas; if anything, it encourages reflection and discussion.

I am not buying the notion that we must endure offensive imagery or language because of nostalgia or the risk of censorship gone too far. Lies, hateful and hurtful visuals can and should be named. Some are more worried about being called “PC” or politically correct, than undoing the damage caused by white supremacy and white privilege. If that is where the concern lies, there is more to worry about than a publishing decision by an organization that is, after years of consideration, trying to get it right for our future and the future of our children.

In my view, it is the past acceptance or obliviousness to the subtle and not-so-subtle racist messages in books, television, movies, and advertising that contribute to the disease of racism. It isn’t the only factor that feeds it, but it plays a role, and acknowledging it as such is a step in the right direction.

Like the Dr. Seuss Enterprise, I look forward to a new chapter.

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.

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We Need to Erase This Word

By Chrystal Venator

 

little boy in a field

I wish the r-word would just disappear. Poof! Be gone. Permanently erased forever.

The r-word is a euphemism for “retard” or “retarded.” It is a derogatory and insulting term used to describe or insult individuals with intellectual disabilities. I’m so tired of hearing it and reading it on social media used to insult a person, place, or thing through comparison to a person with an intellectual disability. There is no correct way to use the r-word. None. It needs to go!

If you haven’t already, please kick the r-word to the curb, once and for all. I’m so tired of reading the expression “that’s so retarded.” People need to stop using it as a descriptor. It’s not a joke. The r-word has such a negative stigma attached to it.

In a world of social media and a pandemic, more and more people are going online including those with intellectual disabilities. They have a right to be in the online space free from disrespect and online bullying. I have seen friends use this word. It’s like a stab to my heart. They know the struggles that I have with my child, how hard he works, and the obstacles he faces and seeing them just throw that word around, out into the world- like nothing. It is beyond disheartening.

It is really one of the worst things that they can say. I wish that people thought before they spoke. I wish they realized how hurtful and demeaning the “r-word” is. I wish they could live in our world for a day so they could realize the love, kindness, strength, fight, heart, friendship, and perseverance of those living with intellectual disabilities. They are missing out.

This is more than a word, it’s about respect and attitudes. It’s about people looking down on others and judging them because of perceived capabilities. Never make an assumption about what another person can and cannot do. My son is an amazing little boy. He loves life and other people. He likes muffins, telling jokes, YouTube, and Buzz Lightyear. He loves hugs, stickers, swimming, and being included.

He is love, kindness, acceptance, purity, positivity, strength, and courage. He is smart. He is capable. He has encountered more obstacles, jumped more hurdles, and climbed bigger mountains in his mere five years than some people encounter in a lifetime. He is more than any assumption, barrier, limit, or diagnosis. He is and will always be more than the ignorance, negativity, hate, opinions, and preconceived notions of others. He will always be more than the r-word.

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. 

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How My Son’s Diagnosis Taught Me More about Myself

By Shannon Gainey

mom and baby

Photo: Adventures in Autism with Murphy

I’m Shannon and this is how autism helped me find myself. My true self. I’m the proudest boy mom to the two most amazing boys. One of those boys was diagnosed with autism two years ago and completely changed everything I thought I knew about myself and autism.

The day our “Adventure in Autism” started was the darkest day of my life. I felt like I was being forced to go on a journey I didn’t want to go on. I did everything I could to keep from boarding that plane. I tried for the longest to keep that plane from taking off. I just knew this flight we were reluctantly on was headed to crash and burn. I feared the label, autism, more than anything I had ever feared before. I had feelings of shame. Despair. Loneliness. I talked about autism only when I had to. I never openly told anyone my son was autistic unless they asked. I thought that with enough therapy we would cure autism right away. It would be gone as quickly as it had appeared. No one would ever have to know. I cried at the sight of puzzle pieces and I only acknowledged autism during the month of April.

Through all the resistance our journey continued. Day after day. Month after month. Autism was still there, but so was my son. The son I knew before the diagnosis. The son I had fell so in love with since the first days our eyes met. I started to see that autism had always been there, even in the moments that I had put my blinders on. I quickly came to the realization to not love and accept autism was to not love or accept my son.

Day after day, I started to open up little by little. But I was still very guarded. See autism can be a very controversial and confusing world to an outsider like myself. I never thought our hard was “hard enough” and I didn’t think we were worthy. My son was diagnosed with Level 1.High functioning. He could talk. He played with other kids. He made progress. Everyone I associated with autism had it so much worse than us. I didn’t want to seem ungrateful. I didn’t want to hurt anyone’s feelings. I didn’t want to offend anyone. Puzzle piece or infinity symbol? My son has autism or is an autistic? High functioning? Labels? Was I suppose to celebrate the month of April? Was I a bad parent because I worshipped ABA and all the therapies? I kept quiet. I talked about the good things about autism. My new perspective. My journey to acceptance. The progress my son made. The beauty that this journey had shown me thus far. Every time I got the urge to speak about our hard, I shoved it down. I buried it. I continued to show the Disney side of autism. That’s what people wanted to hear about right? People didn’t want to hear the negative. And then my son regressed.

I watched everything we had worked so hard for the past year disappear slowly. I tried to grasp and hold on to our world as I watched it fall apart. I had found myself once again in a dark place on this journey. Except this darkness was different. This darkness was darker than any black hole. Lonelier than any feeling of isolation I had experienced previously. The presence of even the smallest glimmer of light was absent. The sheer hopelessness of our new reality engulfed me. And so I got mad. Mad at this journey. Mad once again at autism. Or so I thought.

I quickly realized it wasn’t autism that the source of my anger was me. It was me. I was so very angry with myself. I realized that I had created my current reality. I was the one who stayed quiet. I was the one who didn’t think our story was worthy. I was the one that stayed submissive about our journey. I sadly realized that the current reality I found myself in, darkness, loneliness, and isolation, could be my son’s forever reality if the world stayed the way it was.

And so I started talking. I started sharing our worthy story. I started talking about the hard. I started processing my feelings through writing. Our world was still very hard. Sharing our story didn’t have any change that. But I started to notice that I was less and less alone. People willingly boarded the plane with us and joined our adventure. That darkness that I talked about earlier, I started that see a glimmer of light way off in the distance. I finally started to feel our story was worthy. I finally felt we were seen. Seen by my parents. Family. Friends. Other moms. Special needs moms. Moms that had a hard way harder than ours. I started to see that people saw my son in a different light. They saw his challenges, his victories. They were able to celebrate with us! That beautiful perspective autism had shown me early in our journey, I had selfishly kept that to myself.

Now that I was sharing our truth, others were able to see the beauty of this journey through our hard. They were able to join us on our adventure. They wanted to join us on this journey. And so I continued talking. And now a day hasn’t gone by where I don’t talk about our journey. I use to not be able to say the word autism. It was too painful. But what no one told me on that dark day two years ago is how this adventure would not only be an adventure about my son, it would be an adventure that would lead me to myself. My true self. Someone who isn’t ashamed anymore. Someone who speaks up for those that are different so they never have to feel less. Someone who knows the worth of her son and what he deserves. Someone not afraid to share and talk about the hard. Because it’s in the hard, that I truly found myself. My entire life was changed two years ago by one word. But it’s the best change that could have happened to me. It’s a change that I needed in the worst way. It’s a change that more people in this world today need. And for that reason, I will continue to talk and share. I won’t keep quiet. Because it’s the ones that are the most resistant on this journey that need that change the most.

This post originally appeared on Adventures in Autism with Murphy.

Shannon is a proud boy mom, Hairstylist, and passionate Autism Advocate. She lives in New Orleans, Louisiana with her two sons Murphy (5) and Merrick (2).  Murphy was diagnosed with Autism at the age of 3. Follow her family as they journey through Autism together on Adventures in Autism with Murphy Facebook and Instagram page. 

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