A Controversial Treatment

~ joannedesimone ~ 6 Comments

 

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Hardware in Benjamin’s leg to repair a fracture. Also, shows his dislocating hip prior to surgery.

 

Over the weekend, I read an article in the NY Times titled Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth? I remember the story of “Ashley X” in 2006 whose parents chose to stunt her growth through surgery (think hysterectomy, breast nodule removal) and hormone therapy. This intervention is as controversial now as it was then. Comments range from (I’ll paraphrase) God bless the families faced with such hardships to Therapies that mutilate children and strip the rights and voices of the differently abled are 100% unacceptable. It’s a heated debate and parents are in the hot seat.

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In the Middle of the Night

~ joannedesimone ~ 2 Comments

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.

 

The Small Bus

~ joannedesimone ~ 8 Comments

 

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When we lived in Brooklyn the most stressful part of the day was, like for most families, the morning.  Getting Benjamin up at 6am, dressing, comforting him through seizures, medicating, and strapping him into his wheelchair in time for his 7am bus was like running a marathon every day.  We also had to wait for his transportation nurse who had her own struggles with parking.

Those of us from Brooklyn can write pages about parking problems, and the overall fun of driving in a crowded city with its less than patient fellow commuters.  I can tell you how little I appreciated drivers who honked at Benjamin’s school bus in the morning.  It takes time to carry a child in a wheelchair down the front steps, load him onto the bus lift, and tie down his chair.  It’s a drag to wait.  Sorry.  Except, I wasn’t sorry and I was sure to wear my very best Brooklyn Too bad for you face as I stared down the piece of work leaning on the car horn. Continue reading →

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

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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
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.

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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 →