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

thanks-autism-2

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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A Message to the Good-Intentioned People Who Pray for Me to be ‘Healed’

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I’ve consciously identified as a Christian since my early teens and simply put, this means accepting that I am imperfect in my humanity and doing my best to show tolerance and love to everyone I meet, as Jesus did (including those who don’t share my beliefs).

As I’ve used a wheelchair pretty much since birth, my disability has always been obvious. This means that I tend to stand out in a crowd, so to speak. Among the most challenging side effects of this is that over the years, quite a number of strangers have felt compelled to publicly pray for me, with healing being the most common subject of their requests.

While I don’t doubt that those who do so have good intentions, being singled out in this manner is generally somewhat unpleasant. It takes me a while to get comfortable with strangers at the best of times. Putting my own social awkwardness aside though, what concerns me is that in many of these situations, the person praying seems to be driven by a desire to fix me or ease my suffering.

Although I’ve been through it several times, the incident I remember most clearly happened while my family was away on holiday at a resort in the mountainous area of the KwaZulu-Natal province of South Africa. I was 11 or 12 at the time and had just been wandering around, enjoying my day, when I was approached by a family who spoke with European accents. The husband did most of the talking and the first thing he wanted to know was if I had contracted polio as a baby — a question I was already used to answering.

After some more small talk, he asked if he could pray for me. Not wanting to offend, I said yes. I remember that he took on a theatrical air, placing his hand on my head and shaking it as he spoke. When he was done, he said, “Now get up and show all these people how you can walk.”

I looked down at my legs, trying to will them into action. After a few seconds, I knew it wasn’t going to happen and quietly said, “I can’t.” After that, the inevitable awkwardness set in and the encounter came to an end.

I’ve made it clear that I respect people of faith, but I also think that sensitivity must be exercised with regard to how that faith is displayed. Even unintentionally instilling a physically-challenged child with the notion that he or she needs to be fixed can do a lot of harm. I have friends who remain believers but refuse to attend services because of experiences just like these.

I’d like to conclude with a request: if you as a believer (regardless of your faith or denomination) are truly motivated by compassion, take the time to understand and accept the disabled for who they are. Because if you do, your prayers will take on much greater significance.

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Dear Shopper Staring at My Child Having a Meltdown in the Grocery Store

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Dear Shopper,

Yes, I know. I’m well aware that my child is screaming — not just a regular scream but an ear-piercing, sanity-shattering screech. Even if I wasn’t seeing and hearing it, I would know by the expression on your face.

Clearly, you have raised your children better than me.

That is what you were wanting to say, right?  There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion or better yet — give knowing looks to other shoppers passing by.

I have no doubt that you have wonderful, well-behaved children. Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children. Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.

And I know that you did your best with your children, that you loved them and want all children to have a solid upbringing in which to start their lives. You are, in all probability, a good person. You probably don’t mean any harm.

This is what complicates what I want to say to you. Because, despite my anger towards you, I happen to have been raised well too. I don’t want to be ugly, even though right now I feel like it.

Because I know some of that anger is misdirected. It is misdirected because I, too, have stood in judgment of someone like me. I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children. When I have children, mine will never behave like that.  I, like most people, wasn’t quite as obvious about it as you. I didn’t stare or make comments that could be heard. But I was every bit as decided.  So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.

The nice thing about human nature, however, is that it can be overridden. And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions. Then presto whammo — you are a new and hopefully improved person.

Let me introduce you to my child. Like you, I marveled at the miracle of life upon becoming his mother. Like you, I rocked, burped and inhaled his sweet baby scent and thanked God over and over for the gift of him. Like you, I had certain dreams for my child. There your path and my path diverged somewhat.

My precious child is autistic. Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter. The truth about autism is that it encompasses a wide spectrum of abilities. And, like you and me, every autistic child who has it is different from the next. Yet they do often share some similar traits – sensory overload and meltdowns are one of them.

Every person on the planet has what I think of as an internal alarm system. Most of us have ours in good working order. But some people with autism have what I like to call a hair-trigger alarm system. Theirs can go off with what seems to average folks like little to no provocation. There is always provocation. Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off. And when it does, it’s loud. Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them. When you see me placating my child and giving in to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm. It isn’t his fault. And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.

I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated. It hasn’t been so pleasant for me either. Problem is — I have to feed my family, deposit my paycheck, pick up prescriptions, etc. just like you do. And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public. I have to leave the house and so does my child. Because I have to teach him about the world. I have to let him practice controlling his alarm system.  So that he, too, can possibly be a productive citizen making come true all those dreams I had for him when he was so small.

With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children. And for some of us, our dreams will have to change for our children. We may need to re-define happiness and success. For life is like that. We constantly have to reevaluate our expectations of ourselves, others – and, sometimes, even the grocery store.

I’m hoping that your single human interaction with me has given you an opportunity to be a better person. For, with 1 in 91 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me. All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm. You could be the bright spot in our day. And, then, if you want, you are welcome to ask all the questions you want. Your curiosity doesn’t offend me in the least. Most of us aren’t the least bit upset to talk about our kids – any more than you are. If anything, it is an opportunity to educate and dispel myths.

And, maybe, just maybe, you will be standing there when the alarm gets turned off. Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.

Who knows? Maybe I’ll get to see the one hidden behind yours.

This post originally appeared on Flappiness Is…

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To Any Parent Nervous About Having a Baby With Down Syndrome, This Is for You

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A group of families affected by Down syndrome found a beautiful way to put future parents at ease.

Carolyn McDiarmid, 44, from Victoria, Australia, grew up across the street from the family of a little girl with Down syndrome. She later had a close friend in nursing school in Melbourne who had a child, named Harvey, with an extra chromosome. None of this, however, prepared her for the shock of finding out that the child she was carrying also had Down syndrome.

Carolyn McDiarmid and her son Clem
Carolyn McDiarmid and her son, Clem. Photo by Justin Ridler.

McDiarmid grieved for the loss of the child she expected to have and even considered aborting the baby. However, when her son was born, everything changed.

“The fear and the despair lifted,” she told The Mighty in an email. “He was just this beautiful baby who relied on me like my other boys. When I looked into his eyes, I knew it was going to be OK.”

Just a few months later, McDiarmid’s good friend, Angela Blakston, became pregnant and early scans showed she had a high possibility of having a baby with Down syndrome.

The two women shared their experiences with one another and quickly decided they wanted to help other people share their stories as well.

An American publication called “Gifts: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives” first inspired McDiarmid. She would stay awake all night reading it and decided they would make a version featuring families in Australia and New Zealand.

They set up a website and contacted all the Down syndrome associations in Australia and New Zealand to put a callout for story submissions.

Replies poured in, and the women picked the best ones and those that showed a diversity of experiences. They also raised $20,000 to publish the book, and on World Down Syndrome Day in 2014, “Now I See” was released.

Check out some quotes from the book participants below. All photographs are by Justin Ridler.

“Caoimhe leaves me notes scattered like wind-blown petals, declaring love.”

Kathy Evans with Caoimhe
Kathy Evans with Caoimhe. Photo by Justin Ridler.

“I thank Kimba for the gift she gave me to understand that sometimes different is a very wonderful thing.”

 “Early on, a wise person said to me that we shouldn’t change our life plans because of Down syndrome, but I didn’t believe them. Now, I do.”

 “We aren’t special, but we are different, because we have Perri in our family to remind us of what is important.”

 “We will always be in Tiana’s corner.”

 “Andy taught us so much: patience, understanding, the ability to go with the flow and to not worry about the things that don’t matter.”

“Phoebe has made a difference to so many family members and friends because of her beautiful nature and attitude to life.”

 “An important thing we have learned from Claudia: disability is only a word for some people without it.”

Craig, Janet & Claudia Coulson
Craig, Janet & Claudia Coulson. Photo by Justin Ridler.

“Now I See” is a non-profit project where all book proceeds are used to print more books to give to new parents and health professionals for free.

“I hope that it gets into the waiting rooms of women’s ultrasound clinics. I hope that parents who are given an antenatal diagnosis get the opportunity to read some of it before making any decisions,” McDiarmid told The Mighty. “I hope that it can provide hope, encouragement and reassurance to families embarking on this rich journey.”

So far, the response to the book has been overwhelmingly positive. The Association for Children with a Disability and the Down Syndrome Association of Australia were both supportive. Down Syndrome Australia recently purchased enough copies to put in their new parent packs.

“If this book can help just one family, we have accomplished what we set out to achieve,” McDiarmid said.

Photography by Justin Ridler.
For more information, or to donate please visit the website

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