Plinth Blog Special Needs Parenting

27Jan/140

This Morning’s Greeting

Alice has a habit of just barging into our room and her brother's room when the door is closed.  We're working on this.  This morning, I was getting ready to get into the shower, but I was still dressed as Alice started opening the door.

"Knock, Alice.  Knock.  We knock before we come in."

Alice stops and with the door cracked open, knocks. "Hello...?"

"Yes Alice, what is it?"

At this point it's almost like Les Nessman insisting that people knock on his invisible door, but we learn by practicing.

"Can I come in?"

"Yes Alice, you can come in."

"Good morning daddy! How was your sleep?"

"OK, but I feel very tired. It snowed last night. Have you looked at it yet?"

"Yes. It's fabbalous."

And that was my greeting this morning.

24Jan/141

Prosody

Copyright © 2014 Stephen Hawley, all rights reserved.

Prosody is the rhythm and musicality of speech.  It's a fascinating feature of human communication and more pronounced in some languages (especially tonal ones) than others.  There is always concern about Alice's speech.  She mispronounces all the time - sometimes mechanically (e.g., she lacks the muscle tone to make a particular sound accurately) or structurally (swapping in one phoneme for another).  Prosody can be an issue with some people with Down syndrome (it is particularly an issue with people who are on the Autism Spectrum), but let me tell you it is not an issue with Alice.

While her singing is decidedly off-key, her speech can be remarkably consistent.  When she greets me in the morning, she sings a song.  It's struck me so much, that I transcribed it:

song

 

And that is a simple thing that brings me great joy.

22Jan/140

Nicknames

Alice has been making up nicknames for me.  I don't know why - probably just because it's silly.  She started calling me Daddy Bunk.  Can't explain that. Then she started calling me Daddy Cellphone.  OK - guilty as charged, I use my cellph--wait.  See, here's the problem with Down syndrome.  Alice often has very interesting things to say but we don't always understand her and have to ask her to repeat herself 3 or 4 times (certainly frustrating for everyone). She was actually calling me Daddy Stefan (which is close enough to Stephen and she probably picked that up from a princess movie).  Too late - I was already calling her Alice Cellphone right back.  So now at unpredictable times you'll hear exchanges like this:

"Let's go, Alice."

"OK, Daddy BUNK"

"OK, Alice CELLPHONE"

21Jan/140

Injustice

When Alice is confronted with what she believes is injustice, she will decry it and assertively tell you "I call the police!!" (with that many exclamation marks). Unfortunately, injustice takes many forms, including (but not limited to): bath time, no dessert, end of TV for the day, having to spend time with me, her brother acting like a noodle, etc.  My typical response to her is "Go right ahead. What do you think the police will do when they find out that you need a bath and we asked you to take one?"

Two days ago, she was in the basement watching a movie and when the action got rough for the heroes, I heard "I CALL THE POLICE!!" and then a few minutes later she started dialing random numbers on the phone.

Well, that backfired.

19Jan/140

Having a Child with Down Syndrome, Part LXXI: She’s a Tween

Copyright © 2014 Stephen Hawley, all rights reserved.

Alice and I have a standard lunch date: Taco Bell.  It's stupid and unhealthy, but it's a once in a while thing and for her, a means of developing independence in an environment that is conducive.  She orders her own food and helps set up the table.  I've talked about this before and have been talking with the management to try and help make the restaurant more accessible.

Today, while we were eating, Alice put her food down and smiled and waved.  I raised and eyebrow and looked over in the direction that she was looking.  There were two men at a nearby table eating lunch.  They both appeared to be construction or carpentry workers.  Alice said, "That's my husband." This triggers all sorts of warnings in my head.  Alice is very trusting of other people.  She assumes the best and to date has pretty much gotten the best from people she has encountered.  This is terrific - it says a lot for the quality of people in this area, but she has no anxiety whatsoever about talking to other people and telling them all of our business.  No filtering at all.  I've been trying to remind her - she knows the rule and can recite it - but it doesn't seem to help.  People are just too fascinating for her.  To a certain extent, I understand.  As a young child, I was a very out-going person and enjoyed meeting new people, but somewhere along the line, I outgrew that.

I tried.  I reminded her of our rule for talking to strangers.  I asked her if she knew him.  "Yes." "OK," I responded, "what's his name?" Without missing a beat, "Bennett."  I reminded her of the rule and we went on with our meal.  After the man in question finished and got up to go, Alice accosted him, "Scuse me. Hi, I'm Alice and this is my daddy.  Scuse me - what's your name?" "Brian." HA!  See! I knew you didn't know his name!  I explained to him what had happened and that Alice had decided that he was going to be her husband and apologized.  He took it with a smile and said it was alright.  Alice interjected and said a big stream of things (a lot I missed) but asserted that she would see him Sunday.  He smiled and said goodbye and gave me a solid friendly pat on the back on his way out.

I don't even know what to make of it except that I guess Alice is a tween now.

For those of you keeping notes, puberty arrives on the same time schedule for kids with Down syndrome as it does for the general population.

Give me strength.