5 Years After My Son’s Autism Diagnosis, I Realized Something

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Today was our annual check-up with our Behavioral and Developmental Pediatrician; let’s refer to him as “Doc S.” Going on five years now, we’ve made this trip. Quite often in the beginning, and by years three, four and now five, just annually.

Doc S’s office sits off the corner of Springhill Ave., a beautiful street in the town I live, with historic homes and breathtaking oak trees with Spanish moss that overhang the street. The day I left his office five years ago — when we got our initial autism diagnosis — I left confused, angry, devastated, in tears, scared and overall just broken. That day, as I drove home, sobbing, with my just barely 2-year-old son, what was once one of my favorite streets to drive down became nothing but a reminder of one of the most devastating days of my life.

Over the next two years, I would avoid this street if at all possible, because it symbolized one of the most heartbreaking days of my life. On the annual visits that followed his initial diagnosis, I always left the same – sad, in tears and in a funk for days. Damn that doctor! Damn that diagnosis! Damn that street! And damn those oaks! They were nothing but an eyesore, a heartbreaking reminder of a time I so desperately wanted to forget.

I shared a story recently called “10 Things I’d Tell Myself About Our Autism Diagnosis If I Could Go Back in Time.” I read through the comments, and most people could relate to it. There was one comment in particular that really stuck out to me — one piece of advice I wish someone had told me then, the day he was diagnosed. It was, “The little boy you left the doctor’s office with, is the same little boy that you walked in with.” WOW. Boy, would I have loved to have had someone tell me that back then! Now the truth is, while he was the same little boy I walked in with, I was not the same women who walked out of that appointment.

photo.PNG-4 In the five years since that diagnosis — and I’m sure a direct result of — I am a stronger woman. I am more patient, compassionate and understanding.  I don’t look at people in general the same. I avoid judgment at all costs and try to be kind to people as much as possible. I’ve also met some of the most amazing people along the way. Therapists and teachers, whose life’s-callings are to help kiddos like mine succeed! Other parents walking a similar journey who are there for support, questions or just to vent to. As a result of knowing amazing people like this, I am a better person. And while the same sweet little boy walked out of that office that day five years ago, what I would later realize is that a different mom walked out — a much, much, better one.

Life happens. Sometimes hard things in life happen. Raising a child with autism has undeniably been the hardest thing I’ve done in my life. However, it’s also been the most eye-opening too. It’s opened my eyes to the things that matter and what never really did.

Maybe you’re going through something hard right now, maybe you’ve been through something hard, devastating even, recently. Or maybe around the corner, something awaits. That’s life. Good, bad, ups and downs, life happens.

I’m here today to say, you will come out of the other side of it. You will be stronger. You will be better. Just give it time. Give yourself time. And the only thing that taught me that, was time.

In the event the suspense is killing you, my son still has autism (LOL)! And you know what? That’s OK! He’s made tremendous progress over the past five years. Progress, that even just a year or two ago, I could’ve never imagined. You want to know something else? The oaks with the Spanish moss on them, well they’re beautiful again.

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Read more from April Shaw on The Mighty:
10 Things I’d Tell Myself About Our Autism Diagnosis If I Could Go Back in Time

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I Used to Pray I Wouldn’t Have a Special Needs Child

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IMG_6884 I never thought I’d be a special needs mom. In fact, the thought of that used to absolutely terrify me. I remember reading about all of the things that can go wrong when we were trying to get pregnant, and just begging God to give us a healthy child. Praying that I’d rather have no child than one with special needs. I was clueless, and honestly, I make myself a little bit sick. I was absolutely terrified of having a kid with a disability. To the point where I literally cried daily when I was pregnant with Knox, just worrying about him. Looking back, I am so glad God didn’t listen to me. I’m so glad Knox is here. Because really, I was the one with the problem, not him.

I had no idea what it would be like, and how could I? I was close-minded and had no personal experience with anyone with special needs, aside from seeing a person with a disability every once in a while out in public. I just didn’t know. In fact, I had no idea. That’s not to say that I don’t wish Knox could instantaneously be rid of autism forever — because, yes, that would be fantastic for him to not have to struggle. But the fact that he has autism doesn’t make him any less of an amazing kid. It doesn’t make me want him any less. If given the choice, I’d choose him exactly as he is, every single time. Because knowing him is so much better that not having a clue.

Autism is a weird thing. It makes me furious one second, makes me laugh the next, and right when I think I have it figured out, it says, “Ha! No you don’t!” This has been a super crappy parenting week at our house. Knox is getting in trouble at school for the first time ever, and he’s being defiant at home, as well. There’s been lots of running off, swatting, kicking and even spitting. I don’t know where this is coming from because Knox normally has the best disposition ever. He is highly stubborn, and my only thought is that he’s just reaching an age where the frustration over his communication skills has pushed him a little over the edge.

Also, I think he just plain misses me. I work full-time, and by the time I get home, I have two hours with him before he goes to bed. Most moms know that the hours between 5 and bedtime can be the witching hours where your kids lose their minds and cause you to lose yours right along with them. I feel like so much of my evening time with Knox consists of disciplining him, and it makes me feel awful. My guilt eats me alive sometimes. I tell myself I need to be this great parent, do lots of fun outings and activities and spend tons of quality time with my children. But then reality hits, and I feel like all I have to offer them are a couple of worn-out hours of my life, where I’m no fun to be around at all. There have been a lot of tears lately (mine) and yelling (me) and hitting (Knox) and frustration (everyone).

And the thing is, there’s no magic answer. There’s no perfect solution. Parenting is always hard. I don’t care if you stay at home, work full-time, have 10 kids or one. Being a parent is the hardest job on the planet. Adding any sort of special circumstance only compounds the stress. I’m learning in all of this, through this hard season, that all I can do is pray and ask for God’s help in all of this. To seek His face and just bury myself in His word. To pray that I don’t screw this up too much. To pray that God removes the guilt from my spirit. To pray that God revives me and gives me the energy I need to keep up with this kid. And to pray a prayer of thanksgiving that He knew all along just the boy He was going to give me.

Because even when it’s hard, Knox is worth it all.

This post originally appeared on My Coffee Is Cold.

Read more from Jessica Wyndham on The Mighty:
He Doesn’t Care… Why Should I?

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How Should You Picture a Kid With Disabilities? This Way.

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When strangers used to ask Rachel and Sam Callander what was wrong with their daughter, the parents offered a lighthearted explanation: superpowers.

At the time, Evie Callander, who was born in 2008 with a rare chromosomal disorder, clearly experienced the world differently than other 2-year-olds. Certain sensations — the sound of electric sliding doors, for example — overwhelmed and upset her.

But that lighthearted answer — “superpowers” — turned out to be more true than her parents first realized. Because in her short, 2-year-long life, Evie exhibited a deeper, stronger, practically glowing sense of strength and love. It doesn’t get much more super than that.

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Super Power Baby Project / Rachel Callander

1001163_157163784469083_432214190_n When Evie died, her parents kept her close to them. Her pictures cover their home. They talk about her often.

“We knew we had been changed for the better because of her and people could see it too,” Rachel Callander, 33, told The Mighty. “They knew it was hard and we were really struggling. However, within all the sadness there was always a sense of pride of who she was and what she brought to the world.”

The entire experienced inspired the Callanders to celebrate other children with superpowers. They began photographing kids with disabilities in New Zealand and surveying their parents. The main question? “Tell us about your child’s superpowers.”

Portaits and quotes from 72 families now make up the “Super Power Baby Project” — an art book the Callanders hope will inspire others to look past disability.

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Super Power Baby Project / Rachel Callander
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Super Power Baby Project / Rachel Callander
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Super Power Baby Project / Rachel Callander
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Super Power Baby Project / Rachel Callander

“We want people to see humanity — to see the images and smile and say things like, ‘What a lovely child, how beautiful,'” Rachel Callander told The Mighty. “We want them to be struck by the children’s uniqueness, their innocence, their bodies, their eyes, their deepness — just as they would a stunning image of any child. We want people to see the children as their parents see them — with eyes of love.”

Sometimes, the project even helps parents see their own children in a new way. Callander says, when taking the initial survey, one participant’s mom realized she’d never talked about her child’s disability in a positive manner.

“She said she was no longer afraid to share him with the world,” Callander recalled. “We knew at that point we were onto something important.”

The book doesn’t view superpowers in a turn-yourself-invisible, fight-evil-villians, wear-a-flashy-costume sort of way. Its goal is not to trivialize a life with disability. It’s only out to celebrate and highlight strength.

“These kids really do have a deeper capacity for unconditional love, empathy, compassion, and they do bring out a deeper sense of love in people.They do promote a greater patience in others,” Callander told The Mighty. “When I think of the things the world needs right now, it’s love, patience, kindness and acceptance of others. These qualities are world changers in our opinion.”

Below, you can watch Callander’s TEDxAuxland Talk, where she further explains the project. And if you’re interested in ordering a copy of the book, head here. You can also get updates on Facebook.

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The Best Part of Special Needs Parenting. No, Really.

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unnamed A few months back, I got an email asking a few of us special needs moms to share the gifts of special needs parenting. The responses would be published, and the world would probably be a better place. I like to see my name in lights as much as anybody else, but I looked over at my autistic son who was talking to a crayon, I looked down at the stack of bills due this month, and said, yeah, maybe not today.

But the question stayed with me.

Don’t misunderstand me here. My son is amazing, and I love parenting this kid. But the question — as I decided to interpret it anyway — was what is great about parenting a child with special needs, not what is great about your kid with special needs. The latter is a much easier answer, but that’s not the answer I set out to find.

I thought about it. If you get past the therapies and the bills and the education issues and the worrying about the future, keep going beyond all the doctors and the teetering patience and the stress, if you really, really look, is there something back there, hiding, that is uniquely awesome about all this?

I had come up empty-handed for a few months now. But then…

We were cruising through the Ace Hardware, and my son found some PVC piping. He plopped himself down on the floor, grabbed a few pieces, and started configuring them together. A sales woman approached us, asked if we were finding what we needed, and in response, my son asked, “Oh hi, can you make a B-29 from this?” The sales woman said to me what everyone says to me, “I think you have an engineer on your hands here.” I smiled, and said what I always say. “Maybe.”

My son’s measurable mechanical talents live right next door to the fact that, at 8, he thinks it’s perfectly acceptable to sit in the middle of the PVC aisle at Ace Hardware and assemble a WWII aircraft. An engineer? Maybe. The truth is I don’t really care.

Wait. Say that again. The truth is I don’t really care. At all. I have no attachment to any plan that my son become an engineer, a pilot,or the CEO of the next Google.

I have great attachment, however, to the hope that he is happy.

Well, wow.

In the middle of a hardware store, I stumbled upon the special needs parenting pot of gold. If my son were typical, if we didn’t work so, so hard on what comes naturally to other kids, I can assure you that I would have his happiness tied to long-term education and career goals, all bundled together with socially-praised measures of success.

I have absolutely none of that.

I want my son to find his place in this world, wherever that is, and I want him to be happy. That’s it. I think this is about as pure and lovely as it gets. For the first time ever, I can honestly thank autism for something.

Sincerely,
Becca

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This post originally appeared on Sincerely, Becca.

Read more from Rebecca Masterson on The Mighty:
Dear Mom in the Waiting Room

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36 People Perfectly Explain Why Special Olympics Is So Important

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We write about athletes nearly every day at The Mighty. After all, athletes defy odds. They work hard, they prove naysayers wrong and they teach us about determination and commitment. They face adversity head on and go after their goals.

No organization celebrates the Mightiness of sports more than Special Olympics. We’ve touched on this in our stories, but we wanted to give the people involved – athletes, family members, fans, volunteers and sponsors – an opportunity to answer a simple but powerful question. Why is Special Olympics so important? More than 1,000 people responded to this question that we and Special Olympics posed to people on Facebook.

Here are our favorite responses.

SO Michelle

SO Jill

SO Alex

SO AJ

SO Andrea

SO Amy

SO Jenny

SO Barb

SO Audrey

SO Bonnie

SO Anna

SO Danielle

SO Didi

SO Jason

SO Robin

SO Melissa

SO Stacie

SO Heather

SO Jerry

SO Rachel

SO Jodi

SO Kelly

SO Cindy

SO Judy

SO Kayleigh

SO Keith

SO Michelle2

SO Heather2

SO Sherry

SO Wendy

SO Hailey

SO Kim

SO Tara

SO Lori

SO Crystal

SO Cara

Why is Special Olympics important to you? Let us know in the comments below.

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‘What’s Wrong With His Legs?’ A Special Needs Mom Public Service Announcement

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It’s hard out here in these parent-of-a-child-with-special-needs streets.

People have no common sense or just don’t know no betta. That’s where my public service announcement comes in. I figure it can’t hurt to educate folk as to what the experience is like on the backend of some of their ignorant (meant in the truest form of the word) comments. This time it’s me having to respond to the question, “What’s wrong with his legs?” from a stranger… in a motorized chair… with a cane… at a Wal-Mart. Seriously.

So yeah, that happened. Consider yourself informed. Curiosity is fine, but choose a better word than “wrong.”

This post originally appeared on Glamazini.

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