A Wish Come Clear

Choosing Love, Losing Fear, & Finding Home

Why I Am Not Afraid of Having A Child with Autism

When I’m feeling out of sorts or uninspired, my favorite remedy is to go for a long walk. Such was the case this weekend, when I found myself stressed on Saturday morning. So, I headed out the door.

After a mile of walking, I felt myself starting to smile. The tension within abated as I noticed the beauty around me. Blooming flowers, fluttering birds, blue skies … all worked together to move my mind from anxiety to appreciation. As I walked through Rock Creek Park, I felt the noise within quieting down.

And in the newfound quiet, I remembered a particular conversation. Allow me to share the story:

This past Thursday, I was babysitting for my friend Allison’s son. We headed to the toddler park, as we do whenever the weather is fair. My friend’s son loves the park (especially the swings), and I love being outdoors and watching him explore the world.

As my friend’s son played in the sandbox, a woman came over to me and began a conversation. I was surprised, but pleasantly so; she reminded me of a cousin of mine, and we talked companionably. Her name was Kim, and she had three children at the park that day.

When I asked about her kids, she told me the story of her son’s birth. She hadn’t been someone who always wanted kids, she said, but when her son was born, she was hit by a wave of love too big to understand or explain. She spoke with wonder in her voice, and I listened intently.

The conversation turned to life with toddlers, and she mentioned a period in which her son hadn’t hit certain developmental milestones. She said, “We were afraid, you know, that he was going to have developmental delays, or autism. But he didn’t.” Her tone was matter-of-fact. I simply nodded.

It was such a small moment, but I’ve been turning it over in my mind ever since. Part of me wanted to say something like, “My brother Willie has autism.” But at the same time, part of me knew that Kim’s words were simply a statement of how she’d felt at the time, not a judgment about autism or people with autism.

Simply put, she’d been afraid. And I understood that.

I, too, have had moments in which I’ve feared having a child with special needs…and having a child, period. I have had moments in which I am so daunted by the prospect that I hesitate to think about becoming a parent. Having grown up with my brother, having lived in L’Arche, I know what a tremendous responsibility it is to care for someone with a high level of need. (And yes, all babies and toddlers fit that description!)

That said, I cherish relationships with people who have autism and special needs. They have changed and blessed my life in ways too numerous to count. I cannot imagine life without the people at L’Arche, without my brother, without my friends. (Likewise, my friends who are parents tell me that, while their children’s needs can be demanding, their very existence is an incredible gift, one that continues to transform them.)

Even so, we live in a world that is afraid of difference and disability. We live in a world wherein many parents abort when doctors tell them their babies might be born with special needs such as Down Syndrome. We live in a world wherein people with special needs are discriminated against from day one.

It’s no wonder that parents (and potential parents) are afraid. We’re afraid of a level of need we think won’t be able to meet. We’re afraid of children we don’t know if we’ll be able to relate to. We’re afraid of the world’s judgment of such children, and we’re afraid of our own judgment, too.

As always, we’re afraid of what we don’t fully understand.

As I walked through Rock Creek this weekend, a crucial question sounded within me: Am I afraid to have a child with special needs? Quickly, my answer arose — defiant, strong, compassionate, certain.

Tears started running down my cheeks as I realized …

I am not afraid of having a child with autism. Or Down Syndrome. Or Fragile X. Or any of the other -isms and diagnoses there are in this world.

It was such a simple realization, but its power — and its implications — took my breath away.

I used to be afraid, but now, I’m not.

Before, I felt as though I could say yes to a child with special needs, but that I’d say that yes in fear and trembling. I felt guilty for feeling afraid; after all, I know and love many people with special needs. But now, after so many years of carrying this heavy burden, it has tumbled away.

The relief I feel is so huge, I have to sit down. I walk over to a picnic shelter, and let myself rest as the tears fall.

I’ve feared the possibility of being a parent of a child with special needs because I’ve lacked the faith that I will be able to welcome and love and celebrate that child exactly as they are. But as chickadees flit around me, pecking at crumbs, I know that the love Kim spoke about having for her child has (somehow, inexplicably) hit me too. There is only the possibility of such a child in my life, but I love her (or him) even in the abstract.

And in that moment I catch a glimpse of what it means to think of ourselves as children of God. It means that we are cherished long before we are born. It means that each of us is a good and perfect gift in our own right, needs and weaknesses and frailties and all.

And although we might feel like strangers to true acceptance, we are always invited in to a new vision of beauty … one that would not be complete without people with autism and special needs.

As I rise to walk home, I spot an eagle soaring overhead. And I think to myself: I’m only human. I will never feel ‘prepared’ to be a special needs parent (and that may not be the path that my husband and I are led to walk). And in the course of my journey, I will probably feel afraid again.

But the fear will never have the same power now that I have felt the love.

***

“She told me I swallowed the blue pill. She told me I could never go back. But that I held a key to a door that no one else does.” -Kelle Hampton, Nella Cordelia Birth Story

You, the friends, families, and loved ones of people with special needs — you have helped me to move beyond my fear to a place of greater faith. Thank you.

If this post spoke to you, please share it with those you love.

Finally, I’ll be on vacation next week, so look forward to a new post on April 2nd!

***

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About Caroline McGraw

I'm a would-be childhood paleontologist turned full-time writer, digging for treasure in people and uncovering sacred stories in ordinary days. I grew up in New Jersey (think peaceful suburb, not Newark), graduated from Vassar with honors, then served as a live-in caregiver and program director at L'Arche Washington DC. Nowadays, my husband renovates our historic 1901 home in northwestern Alabama, while I try (& fail) to keep our cat Bootsie from developing an epic tuna fish addiction. It's a beautiful life. Follow me on Facebook, Twitter, or Google+.

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19 Replies

  1. This was an ABSOLUTELY AWESOME and revealing article. It conveys exactly what is conveyed in my interactive children’s book titled God Chose Me. Because God chose those who are differently-abled and those who are in the lives of those who are differently-abled, you need not be afraid. Many times God gives you more credit than you give yourself. If you are chosen its because you are strong enough to handle it and the PERFECT parent for that child. You will find that God will give you a PASSION for something without your permission so, if you are chosen to have a child with Special Needs; its not a punishment, its not an accident and it’s not a curse…..Its a Blessing!! My son is 7yrs old with autism, my daughter is 9yrs old and typically developed and I’m so glad God Chose Me and my husband to be their parents.

    I have a blog titled “A Life Like MINES” at http://alifelikemines.blogspot.com. If you get a chance check it out. Thanks again for this article, it was GREAT!!

    Pam Mines
    http://www.luvemlikeminespublishing.com/index.htm

    1. Thank you, Pam! It sounds like you’ve experienced a similar journey; congratulations on your book as well! I’ll be sure to stop by your site. :)

  2. This is beautiful. I feel the same way. I would be blessed to have any child in this world. My friend just had a child with down syndrome. At first it was very hard for her to accept but now that child has so much love it’s insane. There is a special place in this world for every child.

    1. Amen to that, Meg! So glad to have connected with you.

  3. Erin

    Thank you for reflecting how I’ve felt lately. While my fiance and I are nowhere near ready to have children yet, we had an open discussion about this last semester. My psychological development course required a paper in which we were to research all factors that might affect a fetus in utero or before conception developmentally. Two hours into my research on the APA database, I was in panic mode and told my fiance I was now terrified to have a child. I’d come up with this long list of things I’d found just in the APA database.

    He told me to walk away from the research for a bit to regain focus. Once I was able to calm down, the first words out of his mouth were, “No matter what our kid is like, we will love them. And if our kid does turn out to be special needs, they’ll have the perfect mom for the job, since you have experience working with special needs.”

    And you know what? He’s right. Anyway our future children turn out, they’ll be beautiful to us. I may not be completely prepared – but at least I know I’m willing to take on anything, be it a “normal” child or one with special needs.

    1. What a wonderful story, Erin … and what a great fiance, too! I can definitely relate to that feeling of panic, and then the sense of release when you realize that love will be enough.

  4. An absolutely beautiful piece! (then again I always say that to you don’t I; but it’s so true – everything you write is simply beautiful; what a gift you’ve been blessed with – the heart-speaking/touching of words.)
    We are never prepared for a child with special needs. It is an unknown journey, one which evolves as we go travel this crooked path. I, as you know, have a daughter with special needs (she’s almost 30). At first it was a huge disappointment and deep heart-ache. But with time, I viewed her as a gift, as my other children and took tremendous pride in all she could do (as opposed to what she couldn’t do). As an adult now, I am so proud of who she is and how she’s living her life, and am ever so grateful for the richness she has given my life.

    My 2 pieces on this: http://rebuildyourlifecoach.wordpress.com/2011/06/21/daughter-and-mother-adjust-to-being-on-my-own/
    http://www.rebuildyourlifecoach.com/picking-up-the-pieces.html

    1. Getting choked up just reading this! Thank you, Harriet – your words and your life are such an inspiration to me.

  5. Beautiful, dear friend. Be not afraid, indeed.

    1. Amen. Thank you, my dear – your friendship always helps me to let go of fear and welcome love.

  6. Tam

    Just read this a couple of days ago. It really struck me at the time and it seemed fitting to share here: “Who of us is mature enough for offspring before the offspring themselves arrive? The value of marriage is not that adults produce children but that children produce adults.” -Peter deVries

    The birth of a child is transformative and who you transform into must fit your individual journey. I also loved what Pam wrote above: “If you are chosen its because you are strong enough to handle it and the PERFECT parent for that child. You will find that God will give you a PASSION for something without your permission…”

    With love, faith, and openness parents can be transformed to meet all the special and unique needs of their particular child(ren). Thank you for sharing your journey, Cari. Love you.

    1. What a perfect quote! Thank you for sharing it, my dear friend. I love you and can’t wait to see you this weekend!

  7. donna

    Too sweet for many words…just savoring what love can do!

  8. Metod

    Caroline, this is so beautiful. Your story reminds me of the time when my wife Virginia was pregnant with our 3rd child Simon and the doctor warned us
    that there could be some related risks because of her age. I remember thinking about it for a while, but I knew in my heart that I would love the child no matter what.
    I wish the people who are still afraid would read your stories…as they are so moving and inspiring.

    Enjoy your well deserved break :)

    1. What a beautiful sharing, Metod! Thank you. :)

  9. Any diagnosis is just a label. It doesn’t change the person inside… or it shouldn’t. I just finished The Memory Keeper’s daughter and thought of you and your work. Such a different time then.

    1. Amen to that, Tara! And oh, what a sad and beautiful book – I concur.