Month: September 2015

On my mind: A little boy in Chicago

~ joannedesimone ~ 3 Comments

In the spirit of increasing awareness I plan to share special needs related stories currently in the news…

There are several things that troubled me after reading “It was heartbreaking to see my child separated and wearing a trash bag” in The Washington Post.

Imagine it’s the second day of school.  You stop by your 5 year old child’s classroom to find him isolated from the others and sporting a garbage bag poncho because his epilepsy causes him to drool.

Not isolated because he was sick and not wearing a plastic bag fashioned into a smock for a super fun messy art project.

Imagine talking to the teacher, expressing concern about the situation, explaining that there’s extra clothes and bibs in your child’s bag, and offering to send in disposable gloves.

Imagine your son can’t speak so you act as his voice, assume you’ve been heard only to show up the next day to find your son again alone dressed in a garbage bag.

Blood boiling yet?  Hold on.  The best part is still coming. Continue reading →

A Taboo Matter

~ joannedesimone ~ 2 Comments

school pic

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
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

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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 →

Time to Leave Brooklyn

~ joannedesimone ~ 1 Comment

Brooklyn Bridge 2

I was standing in the vestibule of a local drug store raging like a rabid dog. Clearly I was in need of a major life change. I had put it off for far too long. I won’t make that mistake again, although I will never be able to change the underlying cause of my troubles.

Stress is the common mistress my husband and I both keep. We are infused with her presence. We pretend to forget her existence. When she dares to surface we do our best to suppress her influence.

Fourteen years ago my husband John and I welcomed a son. It was Benjamin who first matched us up with this queen of heartache. He was born with a rare neurological disorder. He cannot walk, talk, or use his hands. He has seizures daily. He has endured six surgeries, countless scans, EEG’s, blood draws, and takes a total of 27 pills daily. Our ten-year old son Sebastian reaffirmed the queen’s status when he was diagnosed on the autistic spectrum. Thankfully he is not quite the picture of the classic autistic child but we don’t expect to suffer from empty nest syndrome. Parenthood certainly didn’t turn out the way we planned, but we habituated. When you have children with disabilities, your base is so skewed you get used to unreasonable norms. I suppose that’s why my moment took me by complete surprise.

Continue reading →