“What Kind of Sick, Mommy?” Explaining the Diagnosis…

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“Hospital sick honey.”  That was my response when my child was old enough to understand that she had kidney disease.

It all started in a conversation we were having at a restaurant with my daughter Stephanie’s best friend Kym and her mom Bev.  OF COURSE this would happen in a public place!  Stephanie had always had the same renal diet (the most medically restricted) her entire life but she suddenly started questioning.

“Why can’t I have ketchup?”

“Because it has salt.”

“Why can’t I have salt?”

“Because it will make you sick.”

“What kind of sick Mommy?”

“Hospital sick honey.”

So I told her we’d talk more when we got home.  I had publications from various national kidney organizations that explained renal disease to kids that we read.  I also later made her aware of treatment options such as dialysis and transplant should she ever need them.  I asked her if she had any questions.  I made it clear to her that this shouldn’t change what she could do, she’d just have to work around it.

“The only disability in life is a bad attitude” – Scott Hamilton

That one was actually the easier explanation. 

About 2 years later, AGAIN in a public place (where else), Stephanie purposefully flapped her hands quickly in front of her face, something she usually couldn’t control, and asked “Mommy, what is this?” 

“That’s called stimming”  I answered, not sure if she merely wanted me to label it or explain what it was.

“No, Mommy, what IS it?”

Ok, so it’s time.  “It’s something some kids may do when they’re over excited and helps them calm down.  Have you ever heard of autism?”

“Autism Spectrum Disorder” she replied matter-of-factly as I almost fell off my chair.  Kids know way more than you think they do.

So once again, I told her we could talk more later at home.  I started with children’s books that explained autism and saved a few on inspirational people for when she was older.  I explained that she thinks differently, not better or worse, just differently.  I also explained that’s why she could memorize things she liked such as evolutions and attacks of all 150 Pokemon, and of course dog breeds.  And I thought that’s why she could play any instrument by ear, even switching keys without hitting a wrong note.

It seems like the physical or visible disabilities are easier to explain and to understand for children and even adults.  Although we don’t advertise, nor hide, when some people found out she had kidney disease it was like “poor thing” but with autism they acted like they were getting out the garlic against a vampire – lots of avoidance behavior.

I was careful not to say anything in front of her, even at home, that she wasn’t ready to understand.  Even when I had to once carry her out of Walmart screaming & kicking & hitting because I wouldn’t let her play on a display swingset so she dropped to the floor, I said to the cashier on the way out (so they wouldn’t think I was kidnapping her or something) “She has a-u-t-i-s-m” spelling it so she wouldn’t hear it.  Now that she knows, we’re open about it and she can even tell the degree with other children “he has just a little autism, or she has a lot of autism” or later she could identify other disabilities such as Tourette’s or cerebral palsy, though I had to teach her to say it privately so as not to upset the other child just in case.  I think this helps her understand herself.

You as parents will know when your child is ready.  It’s almost like the sex talk.  You have to figure out exactly what they’re asking and how much they need to know.  You’ll be able to figure it out by the questions your child asks.

 

Remain hopeful,

Lauren

 

Resources: 

Many disability specific organizations have materials for children.  For a general searchable listing, check out www.familyvillage.wisc.edu 

For school age children, Child’s Work/Child’s Play has a series “Taking [disability name] to School”

www.childswork.com/JayJo-Books/ 

Kid’s Health Website has information on specific conditions at http://kidshealth.org/kid/health_problems/

 

 

Lauren Agoratus is a parent/advocate who serves as the NJ Coordinator for Family Voices, a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.