Why I Stand Quietly Beside My Daughter

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I stand quietly while you do somersaults on the bed as you aren’t being naughty, you are just trying to get your out-of-sync body under control.

I stand quietly by the toilet door every time you need to go, and come with you around the house, and sometimes even just across the room, because I know you can feel truly frightened when you are not near me.

I stand quietly at the supermarket checkout while everyone stares at you barking like a dog and blowing raspberries on my arms to cope with the buzzing lights.

I stand quietly while you tell the baffled shop owner that you are looking for shoes that feel hard like splintered wood because your skin can’t bear soft things.

I stand quietly when the attendant gives us scornful looks when I ask for the key to the disabled toilet because the hand dryer noise is too overwhelming for you.

I stand quietly while the nice old lady who lives over the street tells me you wouldn’t be like this if you had siblings.

I stand quietly watching the part-cooked dinner flush down the toilet as the smell was becoming too strong for you to bear.

I stand quietly as you diligently brush your teeth even though it feels like the toothpaste is burning you.

I sit quietly while you scream at me, trying to control the panic you feel because I gently touched your head when brushing your hair.

I sit quietly while the teacher tells me she knows about autism and that you are not autistic and asks if I would benefit from some parenting classes.

I sit quietly while the GP, the occupational therapist and the pediatrician agree how bad it is, but say that there are no resources to support us further.

I sit quietly while you cry because your friends say you can’t play with them any more because you tried to change the rules once too often, even though it was only so you could cope.

I sit quietly watching you desperately try on countless items of clothing, searching your cupboards, feeling the textures, knowing that we will have to cancel your beloved horse-riding lesson again because they all feel too bad to wear.

I sit quietly as you explain to me that you can go to no more birthday parties and no more clubs because people are just too scary when they are excited.

I sit quietly when my family tell me that you will grow out of it, that you just need more routine and earlier bed times.

I sit quietly and rack my brains for something for you to eat as everything you try today makes you gag and wretch until your eyes stream with tears.

I sit quietly when an old friend suggests I would be better off putting you on the naughty step and taking away a beloved toy.

I sit quietly all night while you sleep on the cold wooden floor with your head on my leg as you are really poorly but the warm softness of the bed that should be a comfort is making you feel worse.

I sit quietly while you try to regain some kind of control over your body in a meltdown, scared and sobbing and writhing about, hitting yourself harder and harder and begging me to hit you as hard as I can too.

I lie quietly with my back to you as my smell makes you feel sick and although we both desperately want and need to cuddle, you can’t bear to.

I lie quietly beside you when you tell me that you are the wrong sort of special and the wrong sort of different and you want to die.

I have had to learn to do these things quietly because my daughter needs me to. She is 7; she’s bright, super funny, articulate, thoughtful and loving. She also has autism spectrum disorder.

If you saw her on a good day, you’d maybe think she was a little shy and kooky. You’d maybe wonder why I am letting her wear flip-flops in the winter rain. You’ll never see her on a bad day as she can’t leave the house.

She has severe sensory processing difficulties. A normal day exhausts her and when she feels overwhelmed, even a gentle voice trying to soothe her with loving words can be too much to process, making her feel crazy. She describes walking into a room of people as “like staring at the sun.” She’s incredibly empathetic but you may not realize it, as she feels her own and others’ emotions so deeply she can’t bear it, and so sometimes she has to just shut down. Forget about a hug. She is also desperately trying to come to terms with having a hidden disability that few people can understand.

This is just one story among thousands of different stories of autism. Not everyone is like Rain Man or like my daughter. I know it’s no great piece of prose, but it’s from the heart. Thanks for reading, and I would appreciate it if you could please share to help autism awareness.

If you could donate something – however small – to help people with autism, well, that would be amazing – thank you: www.justgiving.com/autism-awareness.

A longer version of this post originally appeared on Dirty, Naked and Happy.

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Lead photo source: Thinkstock Images

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6 Words That Shattered Every Excuse I Made for My Son’s Behavior

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“I think he might be autistic.”

It took me six months to utter those words.

I used to say… “Yeah, he isn’t sitting up yet, but I don’t think he’s autistic.” “He’s 18 months and finally walking, he was just used to be carried around. He’s not autistic.” “Sure, he’s transfixed by the way that tree moves, but he makes eye contact, so I’m not worried that he’s autistic.”

Beth Tackaberry's son

“He really likes to line things up, but there’s no way he’s autistic.” “He’s 2 but has yet to utter his first word, but he makes sounds and seems to have his own language, so I don’t think he’s autistic.” “He’s a boy, after all, they are late developers. Besides, his big sister must talk for him.” (She didn’t.)

“He’s 3 and talks now. Well, he echoes what we say. At least he’s talking, right?” “He is super cuddly with us. There’s no way he could be autistic.” “He doesn’t engage in play with other kids, but that’s just his age. He loves to play on his own. Besides, he loves to chase his sister. He’s not autistic.”

“He spends an hour running his hands across the ridges of the vacuum cleaner hose. He would prefer lining up letters and numbers over playing with trucks. He hates his hands being dirty. He flaps his hands. He moves and hums and circles the island 100 times (counting each turn). He can’t be autistic…”

“I think he might be autistic.”

I said it to my mom. Finally, after all that time trying to push it to the back of my mind. And we both cried as she said, “I think he might be, too.”

And he is. It took six more months to get the diagnosis.

My beautiful, blond-haired, blue-eyed boy is autistic. And I couldn’t think of anything more wonderful. I don’t know why I was so afraid to utter those words.

He loves animals. And letters. And numbers. He loves his friend M at preschool. And his teachers, too. He loves Play-Doh. And “Blue’s Clues.” And Great Wolf Lodge.

He loves hugs. And his sister. And mommy and daddy. He loves walking in the forest. He loves dance parties in the living room.

His world just looks different to him – and it’s a wonderful world.

He’s my son and is wonderful. Oh, and he also is autistic. And I’m so blessed to be able to navigate his world with him.

Beth Tackaberry and her son

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The Simple Way a UPS Driver Made the Day of a Boy With Autism

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The first time Patrick met Mike the UPS delivery man, the then 6-year-old greeted him with an almost deafening, “What’s your name?”

Patrick, who has autism spectrum disorder, had just learned that individuals each have their own names; it was therefore important he ask everyone that question.

“Often it would catch people off guard, scare them away or sometimes illicit a negative response,” Patrick’s mom, Amy Boyne, told The Mighty in an email. “People just didn’t want him to know [their name] sometimes.”

Mike did.

ups delivery man handing package to young boy

He told Patrick his name and then patiently waited while he dumped a bag of alphabet letters to find an “M” for Mike. That was a year ago. The two have been friends ever since.

“Mike treats Patrick with the same respect and dignity we should treat all people with,” Boyne told The Mighty. “He sees Patrick, not autism.”

Patrick now holds Mike in the same light as Santa Claus and the Easter Bunny.

“These simple gestures are the types of things I don’t experience often enough when we’re out in the community,” Boyne said. “We need more Mikes in the world for sure.”

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The Important Lessons My Brother With Autism Taught Me

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Dear Autism,

You took away my brother’s words. You took away his eye contact. You introduced yourself in a rapid fashion. The babbling, the lack of eye contact, repetitive behaviors, and the lack of social awareness became my brother. These symptoms didn’t only consume his life, it consumed mine as well.

We wanted to get rid of you. Neurologists, psychiatrists, and therapists confronted you. I remember the countless hours my brother spent in doctor’s appointments and therapy sessions. But you didn’t shake. You didn’t budge. You weren’t afraid. You wouldn’t be sent away.

I was afraid of you. I became afraid of the meltdown that was to occur in a noisy restaurant. I became afraid of people calling my brother an “animal” again. I became afraid of walking aimlessly in a hospital again because the autism “spells” came with self-injurious behaviors. I became afraid of the scornful looks my family and I would receive from others who didn’t know you. I became afraid of losing friends – you were “weird” to them. I was angry with you. How dare you think you can control my life?

Autism, you came with a darkness. Yet, you also came with light. You opened my eyes to the difficult truths of our world – some people will judge and reject you all due to a “difference,” and some people will be discriminated against all due to a “difference.” You also showed me that a person must speak up and stand for those who cannot speak for themselves.

Autism, you taught me the importance of patience, kindness, tolerance, and acceptance. I accepted you, Autism. Once I accepted you, I saw your light shine within my brother’s spirit. I saw you glow in my brother’s smiles and laughs. You communicated to us through my brother’s brilliant poetry.

My brother is kind and loving. I am so proud of him. Thank you for sharing your kindness and love for others though my brother, Autism. I look forward to seeing my brother’s bright future with you.

woman sitting on a bench with her brother

Thanks again,

Sophia

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Dear Mama of a Nonverbal Child

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I just wanted to sit beside you, green-sleeved lattes in hand, and talk. I know talking to me is no substitute for the conversation you long to have; I know you’ve gone years upon years waiting for a voice. I know you’d gladly give up coffee for the rest of your life — or books or music or whatever gets you through the day — if it meant you could hear his little voice. Her little voice.

I know the twisted, breathless feeling you feel, deep inside, when someone casually asks, “You sure you want him to talk? I can’t get mine to shut up!” Clenched fists hidden in the pockets of a fleece jacket. And — as if taking a cue from your baby — you say nothing.

Like you, I’ve hesitated in checkout lines when well-meaning cashiers kindly question my son: “And how old are you, young man?” Like you, I smile — as if waiting, too — before replying for him.

I’ve hunkered down to face my child, tears racing from my eyes and his, echoing, “I don’t know what you want, baby” before going through the daily show-and-tell of objects:

“Apple? App-app-apple?” (red fruit in hand)
“Movie? M-m-movie?” (holding out a favorite DVD)
“Drink? D-d-drink?” (pouring water into a sippy cup)

I’ve marveled while talking with kids my son’s age — asking such simple questions, just to hear their answers. “What’s your favorite color?” “Blue! No, orange. No, blue!” For just a minute, I imagine what it would be like to ask my own child these questions and hear his replies.

I’ve heard kids in Target singing along with Idina Menzel: “Let it go! Let it go! Can’t hold it back anymore!” The embarrassed mom sees me, a kindred spirit with her own littles in tow. “They haven’t stopped since the DVD came out!” A shared joke between moms. She thinks I’ve been there, too. My story is too long to tell between aisles of home decor and bath towels, so I just smile and nod.

Boy in striped shirt sitting on the sand

There have been times I hit the tiny “x” on my newsfeed when Facebook friends bragged about their genius toddlers. Ignorance is bliss, they say, and I don’t know if it’s bliss, but sometimes it’s better. I think you’ve probably hit that tiny “x” a few times, too.

You know what else I know?

I know the indescribable feeling of watching another child approach my son and stacking blocks, one by one, beside him. “You want to help me, Milo? Let’s build a tower!” The total joy that comes from knowing my child is seen.

I’ve heard the pure laughter of children, my son’s friends, when they chase him. “We’re gonna get you, Milo!”

I’ve watched patient therapists capture my son’s attention and work so diligently, week after week, to elicit even a vowel sound from him.

I’ve been blessed by high school students who give up their Sunday mornings to serve as aides for my little boy. Every week, I sit beside my husband and soak in Gospel truths because of their sacrifice.

We’ve known sadness, but we’ve also known acceptance and unconditional love. I hope you have, too.

We are in this together.

This post originally appeared on Frayed Flowers.

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Why I'll Never Stop Trying to Understand Autism

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Dear Autism,

I’ve been trying to find the words to write this letter to you for a long time. I’ll be honest — I’ve struggled. You’ve been a puzzle to me (no pun intended). When my son, Drake, was just under a year old, I searched you out. I read about your poor eye contact, improper play with toys and developmental delays. The more I learned about you, the more I read. I Googled every possibility. I said to myself, “no.” Perhaps Drake has hearing loss; maybe that’s why he rarely acknowledges me when I call his name. He is spoiled, that’s it! We baby him to much, and that’s why he still can’t hold his sippy cup by himself at 1 year old. But you persisted. No matter how much I tried to ignore you, you continued to prove yourself to me.

I often wonder what’s involved in your process of choosing people to affect. I imagine it’s sort of like standing on a hill, looking at a valley full of wild flowers. They all look the same, yet they’re all different. Was it a random plucking, or did you see that one flower that stood out a little more than the others? How did you choose Drake? I, personally, believe God was involved. I believe you would not have been able to “pick” Drake without His OK.

It’s been almost one year since the day we received Drake’s autism diagnosis. I remember pulling away from the appointment with an urge to conquer you. I was resolute. My mission was to hunt you down and make you listen to me.

Days, weeks and months have passed, and I’ve fought as hard as I possibly can to bend you to my will. It wasn’t until recently that I realized you’re here to stay. I don’t know if I will ever understand you. You, Autism, are a complex being. You cannot be pinpointed because you touch each person differently. My Drake cannot speak, but he’s sweet, affectionate, a good nonverbal communicator and not aggressive. There are so many children and adults whom you affect more severely. You cause them to hurt themselves and have extreme aggression and major meltdowns. You cause them to have horrible motor skills and sensory issues.

I don’t understand. I’m sure there’s a method to your madness, but for the families who are affected, you can be so difficult. More important, you’re difficult for those who carry your diagnosis. Their struggle to be understood must be overwhelming.

I’ve gone through so many emotions over the last couple of years while dealing with you, Autism. I’ve watched my precious child struggle with you. I’ve noticed other children treating my child differently because of you. I will not quit. Yes, I’ve accepted that you are part of who my child is, but there is more to Drake than you.

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Drake has overcome so many of the obstacles you’ve placed in his path. I have the privilege of seeing the joy on his face when he completes a task easy for other children. I’m so in love with Drake’s sweet-spirited personality and his laid back attitude in most situations. I thank you for allowing Drake’s personality to shine above any other issues he may face. One day, I hope you allow him to live independently. You may always be a part of Drake’s life, but until my last breath, I will fight to make sure you allow him to thrive.

I will anxiously await your reply. I hope you’re not offended by my honesty and overwhelming feelings. I’m just a mom trying to understand you so I can better understand my child. We’re in this together now. Help me so I can help my son.

Regards,

J. Powell (Drake’s Mama)

This post originally appeared on Walking With Drake.

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