The Rumpus

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Benjamin Christmas 2018

 

Many of you know that I’ve been working on a memoir for years. Today, I’m honored to have an essay up on The Rumpus that speaks to the heart and soul of the memoir. Please take a look at Death, Doorways, and Dance and feel free to share.

Thank you.

 

Joanne

 

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Be Kind

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As summer was winding down, I thought about Sebastian’s growth and remembered an essay I wrote when he was still in middle school. I used this piece for an audition and then put it aside. I’m happy to say you can find the essay here on Motherwell today.

Revisiting this essay allowed me to appreciate how much he continues to grow, and how he has found kindness in high school.

Wishing everyone a wonderful school year!

In the Middle of the Night

All parents have middle of the night illness stories:  fevers, earaches, and all sorts of messy situations. No one is exempt. We are united by anxiety and lack of sleep. Parents of children with special needs or chronic medical conditions have their own unique late night challenges.

I am grateful for every uneventful evening. My boys have always been cooperative about keeping a reasonable bedtime schedule. But some nights just don’t go as planned.

My essay, “A Glimpse” is featured in the January issue of Literary Mama.

 

A Taboo Matter

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When my son Benjamin started preschool, I met some moms who have, as I like to say, kept me off a paid professional couch.  I can tell these women anything.  Fourteen years later I am still grateful for their friendship.  Because of them it never occurred to me that not everyone has friends or family who are willing to listen to all the ugly truths that sometimes define special needs parenting.  I mean, I’m Italian.  I was raised to talk.  About everything. Continue reading

Making Friends

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Last week I went to Sebastian’s school for Back to School Night.  I sat in his classroom listening as the other mothers discussed how difficult it was for their children to make friends.  Yes, I know all about that.  I do what I can to help Sebastian.  I immediately offered to exchange contact information with the other moms.   Continue reading

To Sebastian’s Kindergarten Teacher

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Sebastian’s preschool graduation.

Everyone in special education knows transitions are difficult.  When Sebastian was entering kindergarten we agreed to place him in an inclusion classroom.  I have always been a proponent of inclusion.  Sebastian had made great gains in a general education preschool, but I was still terrified of kindergarten.  Sebastian’s skills were so unbalanced.  Lacking an obvious better placement option, we chose inclusion.  The experience soured early into the school year.

Continue reading

Feeding Tube Phobia

John with Benjamin moments before surgery.
John with Benjamin moments before surgery.

When you have a child with complex medical needs decisions are hard to make.  At least they are if you’re the parent.  Doctors tend to see things differently.  Benjamin has brought so many specialists into our lives.  I take these doctor/patient/parent relationships seriously.  No matter how many visits over multiple years, I’m never quite sure we all truly understand each other. Continue reading

A Day in the Park

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It was an ordinary day in the park. That was the plan. John and I walked around the black paved path pushing Benjamin, our non-verbal, seizure-ridden 14-year-old son, in his wheelchair. With cautious optimism, we eyeballed our 10-year-old son Sebastian as he rode his bike on the path.

Milestones are hard-won in our family. Sebastian has a pace all his own, like most kids on the autistic spectrum. His gains, no matter how lagging, are at the heart of my positive daily mantras. So what if he’s behind in reading? He’s reading. Who cares that he still has trouble adding one plus one in his head? He knows the important numbers: his address, his father’s phone number and 911.

In our never-ending quest to experience something normal, we encouraged bike riding. Sebastian quickly became an accomplished driveway cyclist. He was ready to move on to greater challenges. I was mindful about giving him too much freedom. The stories of wandering autistic children are plentiful. Continue reading