Monthly Archives: May 2013

Having a Child with Down Syndrome, Part LXXIII: The Hated Things

Copyright © 2013 Stephen Hawley, all rights reserved.

There are certain things that you must do with a child that they will hate.  For example, my son Stuart (typical) hates getting shots.  They really don’t hurt much, but he gets into a bit of a panic over them.  The thing I’ve noticed about Alice is that the things she hates, she magnifies and goes into a heavy crying jag over.  For example, Alice hates, hates, hates, HATES having her hair brushed by us.  It defies reason because we’re actually pretty good about it (we use detangler and hold her hair and brush starting at the ends), but she can’t stand it and goes hyperemotional.  I say it defies reason because she will brush her own hair without detangler, starting at the roots and yanking the brush through.  You can hear her hair tearing.  Yet this is nothing to her.

Then comes teeth.  Alice has always hated foreign objects in her mouth except for a binky.  When she was an infant and into toddler years, her speech therapist was insistent on doing oral-motor stimulation.  She had little sticks with rigid foam blobs on them and she would open Alice’s mouth and poke around with them.  There’s mixed feelings about the value of this, but since Alice was a relatively early talker for DS, we figured it couldn’t hurt.  Well, except for the permanent trauma.

When it became time to take her to the dentist for the first time, I made a mistake and my dentist made a worse mistake.  My mistake was that I took her to my dentist, who is great with adults (but I had never really seen any kids there).  His mistake was that he lied to me.  I asked him if his office was able and willing to work with a young patient with multiple disabilities and he said, “yes”.  No, no they weren’t. The visit was terrifying for Alice and that lingers on still (not surprising, really), even though her current dentist, a pediatric dentist, is fabulous.

On her last visit, she was good with checking her teeth, but during cleaning the hygienist was a little rough at one point and ended up in tears and refused to cooperate.  Great.  It took me about 5 minutes to calm her down and agree to cooperate and those five minutes were nearly continuous wailing.  The hygienist looked very impatient, likely because they use an open floor plan and all the other kids would be affected.  5 long minutes of calm talking and reassuring.  She finished out her cleaning like a champ, but when the hygienist started with the floss, Alice was reacting very badly.  I said, “let’s not fight this battle today.”  She looked at me with a raised eyebrow and asked, “are you sure?” “Yes,” I answered, “not today.”  Alice calmed down fully, gave the hygienist a hug (we don’t usually encourage hugging people outside our immediate family because Alice tends to get over touchy, but this seemed a reasonable exception), picked out a prize and we went on our way.  Good recovery.  Phew.


Copyright © 2013 Stephen Hawley, all rights reserved.

As a code to this, tonight at bedtime, Stuart insisted that he wanted to read “My Sister Alicia May“, which is a storybook by Nancy Ling Tupper about a girl who has a sibling with Down syndrome describing her sister and their relationship.  Stuart sees himself in the role of Rae-rae, the older sister and told me as much: “Dad, I’m just like Rae-rae, except I’m younger than Alice instead of older.”

At bedtime, Stuart said, “Dad, I want to read Alicia Mae because I’ll probably live longer than Alice and I want to make sure I remember her.”  There’s a big helping of sentiment in there. We had a lawn party yesterday with a bunch of Stuart’s friends and E and I noticed that Alice was being excluded and was starting to act out a little bit, so since some of the kids were inside, we put on The Princess and the Frog and E made a point of letting Stuart know that he shouldn’t change it to something else since it was for Alice since she wasn’t playing with any friends.  I think Stuart took that to heart.

So we read through the book.  Stuart likes reading the spoken parts.  He wanted a prayer to protect him from bad dreams and then he drifted off to sleep.


Having a Child with Down Syndrome, Part LXXII: Sibling Issues

Copyright © 2013 Stephen Hawley, all rights reserved.

I was tucking Stuart in the other night.  He had misbehaved, so he lost bedtime story privileges.  As I tucked him in, I told him that I loved him and he was my favorite boy.  He started crying – just a few tears that I wiped away.  He was rolling over away from me and I said, “hey buddy, what’s wrong?”  He slowly rolled  onto his back and stared up at the ceiling and said, “Dad, I wish Alice didn’t have Down syndrome, because everything would be better.”

Wow.  This is the type of thing that is a signal that the waters are running deep and it will take a little time to figure out what’s really going on.  I asked why he thinks that.  He told me that he really wants someone to play with and that it’s not fair because he wants “to play Lego Star Wars, but Alice can’t play it and the only other people who can play it are mommy and you and mommy’s not very good at video games.”  It was poignant and honest.  I told him that I understood and that it was OK to feel that way, but I didn’t think that everything would be better if Alice didn’t have Down syndrome: it would just be different.  How it would be different is something we can’t know.  Alice is a very loving little girl and he’s lucky how much she loves him. “yeah, but dad! She’s a gossip!”  I smiled.  I asked him what a gossip was.  He was confused – he thought being gregarious (Alice is a people person) meant being a gossip.  Glad I asked.  At any rate, I told Stuart that he was just shy around new people, and that’s fine just like Alice likes meeting new people is fine too.

I’m sorry that he feels lonely and can’t play with Alice as he’d like to all the time, but we can’t always choose that, can we?