The People Who Show Me the Difference Between Awareness and Acceptance

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I’ve been thinking a lot about awareness lately and reflecting on how our family has moved from a place of awareness to a place of acceptance. I thought about those times when people were “aware” of the challenges we were experiencing but did not necessarily make the transition to “acceptance.”

In one of my first posts on this blog, “Change is Never Easy… And It Shouldn’t Be,” I wrote:

We have been given so many gifts as we venture down this new path. I am liking this new destination. It’s not always easy — there have been dark days, for sure. However, I think we have become better people as a result. We have discovered empathy and understanding. We have become more flexible. We have discovered unimaginable courage and resiliency. 

You see, it wasn’t until we started accepting our child for who he is — his strengths, gifts and challenges — that we started to experience success. It was when we stopped trying to make him become who we (or others, for that matter) wanted him to be that the real change started to happen.

When I think about our champions, I realize they, too, accept our child and our family for who we are. They help us identify our strengths and our gifts. They encourage us to embrace our challenges and meet them with strength and confidence. They let us know it’s OK to be different and do things differently.

This is acceptance.

To our son’s fourth grade teacher, Dan, who created ways to build positive connections between my son and his peers. It would have been so easy to displace my son in your class, but you didn’t. And because you didn’t, you showed every other student in your class, including our son, that he belonged.

This is acceptance.

To our local curling club manager, Ken, who created the space for my son to come down and simply slide rocks down the ice because he was interested. You never pressure him to do more or to conform to curriculum. You provide the opportunity for my son to experience something he loves and to move at his own pace.

This is acceptance.

To the psychiatrist, Kelly, who realized that the best way to connect with our son is to meet him wherever he is, even if it means getting down on the floor and playing with a train set. You met with my husband and me and you validated our experiences.

This is acceptance.

To our son’s third grade teacher, Gord, who, instead of being upset that our son would move to another part of the classroom during carpet time instruction, took the time to ask our son questions after the lesson and discovered he had been listening the whole time.

This is acceptance.

To one of my dearest champions, Annie, who comes from such an incredible place of empathy and curiosity. You have never once made me feel like a failure. You’ve guided me through some dark moments, and you’ve helped me regain my courage and strength.

This is acceptance.

To my family and friends who have stuck by us all these years and have taken it upon themselves to set aside judgements and become curious. You have moved from a place of simple awareness to a place of understanding.

This is acceptance.

When I think of these and so many other examples of acceptance, I realize all these experiences have given us hope. Now I can imagine a future where we aren’t just aware of differences — we accept, embrace and celebrate them.

We start with awareness and become more knowledgeable. Then we shift our perspectives just that tiny little bit and create the space to truly embrace others.

This is acceptance.

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To learn more about autism acceptance, search for the hashtag #WalkInRed on social media.

This post originally appeared on Champions for Community Mental Wellness.

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When I Stopped Feeling Helpless as a Special Needs Mom

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We were quickly thrown into the world of special needs after my son, Junior’s first failed hearing test as a newborn. A diagnosis of Sensory Processing Disorder and delayed motor development as a toddler soon followed. In the last three years, I’ve run the gamut of emotions. I’ve felt fear and anger, faith and joy, encouragement and triumph, despair and emptiness. Sometimes many emotions in a day; sometimes opposite emotions in a single train of thought.

But I can handle the fear, anger and grief. It fades with time as life takes on a new normal. Eventually the good days and bad days mingle together and make up reality.

But there’s one emotion I haven’t been able to get used to. One emotion that cuts deeper than anything else and that doesn’t seem to fade with time or experience.

I can’t fix it. I feel helpless.

My boy screams, and I don’t know why. I don’t know what he wants or what will make it better. I’m his mom. I’m supposed to know his needs before he knows them himself. That’s my job, and I’m failing miserably.

I see him in Auditory Verbal Therapy, trying so hard to enunciate his words. Trying to listen with his cochlear implants and doing his best to figure out if I’m saying “cat” or “hat” or “rat.” I want to help him. I want to magically give him good speech and ears that work perfectly. But I can’t. I’m helpless.

I see him in Occupational Therapy, getting frustrated with his hands and feet not working as quickly as his brain. I watch it escalate into a meltdown. I long to make his brain work seamlessly with the rest of his body, but I can’t.

I see him screaming in public because he doesn’t know what else to do. The sights and sounds are just too much, and he can’t filter everything out the way we can. So he yells. I’m met with harsh stares and snide remarks from onlookers.

Then, I look at my little boy and see that smile. I hear him say “Mama,” which is clear as day, even to a stranger. I feel his little hand tugging on me to sit down and play blocks with him.

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And then I realize. He doesn’t need to be fixed.

He needs love.

He needs patience.

He needs to be seen for who he is, not who he isn’t. His perfect little French fry-loving, “Curious George” obsessed self. He needs to be accepted and cherished.

I’ll admit, sometimes I just want to go into a quiet restaurant and not worry that he’s going to do a pterodactyl scream that will get us kicked out. Sometimes we’re all tired, and I wish his road were a little smoother.

He’s not like every other little boy, but that doesn’t mean I need to fix him.

Helpless means I can’t do anything… but I can love him, adore him and give him my time, and that’s all he really needs. I guess I’m not so helpless after all.

This post originally appeared on Save Money, Live Joyfully

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To the Woman Who Didn’t Include My Son Because He’s ‘Different’

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To the lady who told me my son couldn’t be included because he was “different” than the kids in our community:

There are so many things I wish I could show you about my son.

I wish you could hear his infectious giggle, his tiny, squeaky voice starting to blossom and his deep bear growl he learned from his daddy.

I wish you could see the way his big blue eyes light up when he is excited, the way he bobs his head and bum when “dancing” to music and the way he runs to my husband when he gets home from work.

I wish you could smell the flowers he picks, the goop he squishes, and the freshness of his baby clothes.

I wish you could cuddle his warm body at night, tickle his cute little toes in the morning, and wash his delicious, slippery body after a busy day.

I wish you could witness the leaps and gains he has made that leave us, his parents, breathless.

I wish that love was palpable, because if it were, maybe you could feel the tremendous love we have for him.

I think he sounds like any typical 2-year-old. I know he is more amazing than any 2-year-old (though I may be biased on this one), and I wish you thought this, too.

I wish you would consider my son’s future when you think of him.

I hope to one day hear him singing the ABCs, reading at night with his daddy and reciting the Torah with all the confidence of a 13-year-old at his bar mitzvah.

I hope to one day see him playing with his friends, reaching out and helping those in need and dancing (hopefully with more coordination) with incredible happiness at his own wedding.

I hope to one day smell dirt on his clothes from a day well spent, cookies drafting through the house as he eats a snack, and the fresh air outside as he opens the door, coming home from school.

I hope to one day put Band-Aids on scraped knees, give hugs and kisses when needed most and to hold his own babies when the time comes.

I hope to continually be amazed by this gift I call my son.

I hope the world will be more accepting, because if it is, he has all the more potential to succeed.

I think these hopes are realistic, and I know more than anyone how much he can do (more than one can ever imagine). I hope you will see this, too.

I wish for oh so many things.

I wish you could hear his determination as he fights for what he wants (well, maybe with less volume).

I hope one day you will listen to that voice, and help him reach his goals.

I wish you could see how hard he works when he has to learn new things.

I hope one day you will see that potential, and shift focus from his “flaws.”

I wish you could feel his pureness, which radiates from within.

I hope one day you will help elevate that pureness into something great.

I wish you could also include our miracle when making play dates for your kids (AKA future friends).

I hope one day they will learn respect and accept him as he is (perfect).

I wish I didn’t have to write this, for many do believe in him.

I hope it makes a difference. My son may be different (but who isn’t?), things may not come as easily for him as they do for you, but when he puts his mind to it, just watch what he will do.

I think we can all make a difference.

I know he can do anything. The question is, do you?

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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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I’m Told My Brother’s Needs Make Him ‘Hard to Please.’ It’s Just the Opposite.

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To my brother, the handsome man with autism:

When I first met you, you had brown hair that stuck out in every direction, grey-blue eyes, a squirmy, little body, and a crazy, loud scream.  You screamed a lot; I think you were trying to take in the whole world through your deep, wide-mouthed breaths… But all of the pictures, colors, sounds and people were just too much for one tiny baby.

As you grew older, you grew quiet — still taking the world in through your grey-blue eyes — watching “Sesame Street” with me, rocking back and forth to the music and flapping your wrists in your signature way. You liked to flap all the time… while eating hot dogs, watching movies, singing songs. Flapping was your happy place, but also your nervous one.

To this day, you flap when your t-shirt isn’t grey, when we are late for an appointment or when you don’t get to pick where we eat lunch. You are a genius, my brother, because you can communicate more with the flick of a wrist than Ernest Hemingway could in 50 pages of prose.

But that’s just my opinion…

And being a literalist, we both know you operate only on facts.

The fact is, you’re my brother, and sometimes you frustrate me. You’re a creature of habit. You’re set in your ways. You like watching movies that you can quote verbatim.  You’re ready to end a vacation after only two days away, and your world can sometimes melt without an afternoon nap.

I’m told your love for routine isn’t “normal,” that it’s one of the hallmarks of your autism. That it is awful, and life-upsetting, and makes you hard to please. But on the contrary, I find that you, with your steady, simple set of wants and needs, are easy to please. It’s the rest of the world, asking you to step outside of them, that can sometimes make life hard.

But that’s just my opinion…

And being a literalist, we both know you operate only on facts.

The fact is, I couldn’t imagine having any other brother but you, the handsome man with autism.

You’re the one who calls me up just to count down the days until my next trip home. The one who always wants to plan what we’ll eat, what we’ll watch and even what we’ll wear every time we’re together. The man who won’t be seen on Sundays without a tie and who doesn’t understand why blaring Christmas music at full volume in April would ever be objectionable.

You make me laugh. You sing and dance with me. You’re my personal fashion police every time I wear black with brown. You keep up with my Facebook posts, love interests and Saturday night dates. You make sure I’m eating at the Cheesecake Factory near my house. You check on me when I’m home sick from work and worry if I miss a gathering at church. You remember more about my schedule from 500 miles away than I do with it right in front of me.

You are my brother, the handsome man with autism, and I love you.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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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How I Learned to Choose Joy

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Finding my joy was easier as a child. As a teen. Even as a young adult.

The heartbreak of relationships stole that joy. The dream of being a writer that met obstacles like talent and grammar and platform and self-discipline slowly stole that joy.

Or rather, I allowed those things to steal my joy.

Suddenly, finding it became difficult.

I lived most of my adult years from ages 25-35 with a kind of pervasive hopelessness. A kind of non-joy.

I didn’t plan on having children.

I’d babysat all of my life, and I loved the hugs and the songs and the imagination, but I knew myself to be too self-centered and too spoiled to have any kids of my own.

I will never forget the sharp rebuttal from someone I’d dated who said I would be a horrible mother. To my face. I was unflinching. Hard.

Non-joyous.

As much as it hurt, in that moment, he was also right. That would have been a horrible way to mother.

Because children are fragile.

They can become wounded. Hurt. Hard.

When I had my boy, I was mostly in awe. Not happy. In awe.

Finding joy was still difficult.

He was beautiful. Perfect.

But I also had a baby boy who didn’t smile or laugh unless he was tickled or running.

He didn’t smile just seeing my face.

He didn’t giggle when I talked.

He didn’t coo unless I touched his lips.

He didn’t sleep, which means I didn’t sleep.

Until his 4th birthday, he never slept more than 2-3 hours at a time.

It was hard to find my joy.

It was hard to be joyous.

I don’t know exactly when it changed, but I do remember before it did. I was at my lowest.

He was 2 and a half, and he didn’t talk and he screamed for hours on end and he had night terrors and he ate bugs, and I swear his flesh caught fire every time I buckled him in a carseat.

I was back in college. I’d given up writing.

I was majoring in Early Childhood Education.

Because I loved kids, but I had no idea what to do with them. Because years of babysitting had made having kids seem fun, and I was not having fun. Part of me blamed my selfish nature.

The largest part of me thought “This. This is why I shouldn’t have had children. I’m incapable. I’m a horrible mother.”

I enrolled in ECE because I thought someone there could teach me what to do.

And they did.

I found a large part of what I needed to learn in the “Special Kids with Special Needs” course.

Screaming. Biting. Hitting. No cooing. No speaking. No responding to his name. Bolting — oh my God did he bolt. Eating issue. Inability to sit still. Bizarre behaviors. Aggression. Spitting. Lack of ability to play with toys. Lack of eye contact (which, in our case, was not lack of eye contact but actually a screaming banshee if you did make eye contact).

Boy: (screaming)

Me: Quit looking at him! You’re making him scream!

Grandma: I should be able to look at him.

Me: You can’t!

But there it was. In my book.

Suddenly a little bit of the weight of my own inadequacy started to lift.

While I knew I might be grasping for straws, I also knew he was textbook. I could walk down that autism checklist and put a picture of his beautiful little face right next to each marker.

Over the years, my understanding of autism and my boy’s struggles have been a bit of a roller coaster.

Because it isn’t just autism.

It’s ADHD. It’s oppositional defiance. It’s disordered language.

And it’s me. Struggling to find a way to parent him and to find a way to exist with myself.

To find my joy.

Not just in parenting or in advocating for him but in myself.

Maybe a lot of you started off with joy.

Maybe finding your way back was easier.

I’d been without it for so long that it was hard.

But it did come.

In bits and pieces.

As my boy found his voice and as I learned how to communicate with him and as I saw the absolutely heartbreaking beauty in his existence, I began to find joy in so many little moments. My heart began to fill.

I found joy in the quiet moments before he woke in the morning. So I chose to wake before he did no matter how tired I was.

I found joy in his laughter. So I chose to tickle him and chase him more.

I found joy in the peace of prayer. So I chose to pray. Every day. Even if all I could pray was “please.”

I found joy in being strong. So I chose to be strong when I wanted to cry. To be his strength when he had none.

I found joy in being his mom. So I chose to be the best one I could be.

I chose joy.

The rough days are still rough.

But there is a confidence in me that wasn’t there before he arrived.

And while it’s too weighty to put my current, joyful existence on his shoulders, I know he was the reason I began to test my own strength and find my own joy.

If he wasn’t autistic, I don’t know what our lives would be like.

If he hadn’t struggled at a painful level as a toddler, I don’t know that I would have spent hours and hours and hours every day praying for hope and peace and a plan.

If he hadn’t screamed at night, I don’t know that I would have stared up at the ceiling in the dark, rocking him, begging God to help me.

If he hadn’t needed me so much, I don’t know that I would have gotten over myself.

If he hadn’t needed an advocate, I don’t know that anyone else would ever have been more important to me than me.

If he hadn’t been autistic, I don’t know that I would ever have fully, completely and as nakedly turned to God.

And found myself.

And found joy.

So when you read about our lives and I speak from a place of love and forgiveness and joy, I want you to know that it was a hard place to find.

It’s a place I have to root myself every day.

It’s a choice.

It’s a need.

While all these other things are beyond my control and beyond my boy’s control and while life seems unfair or hard or ugly sometimes, I know now what I never understood before:

Joy is a choice.

Maybe one made out of desperation.

But a choice.

And today, like so many days before, I choose joy.

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This post originally appeared on Letters From a Spectrum Mom.

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What People Should Know About Labels Like ‘Behavior Issues’

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In 1974, my little sister who had cerebral palsy started school. The teacher put stick figure PEC pictures all over her tray covered in I assume some type of clear box tape. This little girl came home and we had the most delightful conversation. She was vocal but not verbal, and through these simple pictures, she was able to tell me about her day. Her eyes lit up as she looked at me and we formed a quiet understanding of each other.

It was on that day I realized that a disability or disorder did not define who she was, nor did it define her hopes and dreams about her future. That was four decades ago; my only sister passed away a few years later.

Since then, I have had countless experiences of the same nature. Most of my adult career has revolved around being a caretaker, teacher, and most important, a friend to many individuals who have been labeled. I always see a child, not a disability.

Christian was a 5-year-old boy with autism. The principal asked me to be a one-on-one assistant for him because behavioral issues followed him from another school. The first day I saw him, he was smiling from ear to ear and ready to go. I affectionately called him “Tigger” for the bounce in his step and his never ending smile.

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I observed these so-called “behaviors” in a special education room for about two weeks. During that time, I figured out again through a quiet understanding that he was a rambunctious, typical 5-year-old boy. No one gave him tools to communicate, and what better way to get someone’s attention? That’s right, by being overly rambunctious.

During those two weeks, I introduced sign language and PEC pictures. I asked the special education teacher if I could mainstream him in his kindergarten classroom. Both general and special education teachers were leery but gave it a shot. He flourished around his peers. He still was rambunctious, but he saved that for the playground. He participated in all activities in his general education class, rarely visiting the special education room. He was curious, inquisitive, and loved to explore. Fast forward 15 years later, he is now verbal and transitioning into independent living.

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Zion is a 7-year-old I met last year. He has Charge syndrome. He is very medically fragile to most, but to me, he was a curious little boy who spoke through his eyes and facial expressions.

The classroom teacher was petrified of him because he had MRSA and she was afraid of getting it. Thus, his classroom experience was limited. He was bored with baby toys that were handed to him day after day.

I knew he needed change, so I created a time for reading group. I would read a story and through PEC pictures I would ask comprehension questions to him and let him tell me by pointing to the appropriate pictures. Booyah! He was right on target with his reading and comprehension skills. He is such a strong, courageous little boy who is also typical in his curiosity and love of learning.

He had a simple goal of going 200 feet in the gym in a gate trainer. He surpassed that and then some. How? Because like all kids, he wanted someone to play with him. So that’s what we did. We played bowling, basketball, even dancing and there were days that he went around that 200-foot gym three times. He loves attention and likes to pull you close, especially your hair, so I taught him the art of a hug! He’s the best hugger around.

The list could go on and on with the amazing experiences that I have had with these beautiful children. In the end, they’ve taught me to see past a label and see the child in front of me. They want what all children want: encouragement, guidance, love and attention. My preschool/childcare welcomes children most centers will not accept due to a label that they aren’t sure they are experienced for, when all they needed was experience with kids.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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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