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July 13, 2009

Does Everyone Need Hugs

"Hey, does everyone need hugs?"

Gabriel was prowling the dark office at 10:30pm.  It lays adjacent to his room:  conveniently located post-bedtime, apparently.

Mom and I sat next to each other, typing away at our computers (probably both on Facebook).  Gabriel hugged each of us in turn.

"Dad?" Gabriel asked.  I could see him turning on the sweetness, ready to ask for something.  I had given him a time out about two hours before.  He was attempting to work back into my good graces.  "Tomorrow, maybe we can play Super Smash Brothers."

I turned toward Gabriel.  "Gabriel, this is a really busy week at work.  When I get home, I may not feel like playing video games."

"Okay," he said, "I'll take that as 'that depends.'"

I laughed.

"Maybe when you get home, we'll play Super Mario Brothers.  That depends, right?"

"Yeah, something like that.  I may not want to play a video game, but we'll do something together."

"Ok, Dad."

-- Dad

July 12, 2009

Base Trainer Blues

At the beginning of the school year, Hannah was given a device for augmentative communication called a base trainer. It contained slots where toys were placed, and Hannah was supposed to push the buttons to display which toy she wanted; then it would beep.

Truthfully, I thought this was below her level. She had been using pictures to represent things like songs she wanted sung since about 12 months old. She was using her pulse oximeter to get my attention since 6 months. (She would purposely kick her feet to make it go off. When trached, a person can cry but no one can hear you. If that didn't work fast enough, she would take off her ventilator which was even louder.) I went along with the base trainer because I thought they were the professionals; they know what they are doing.


A couple months ago, I read a book recommended to me by Robert called Schuyler's Monster by Robert Rummel-Hudson.

 

bookcoverschuylersmonster

 

It changed my perspective on what was going on with Hannah's communication device. I realized I was not communicating effectively or correctively with Hannah's speech team.

After this book, I put some calls out, “Can she try the more complicated machines? She has not been exposed to them. We don't know if can use them if she doesn't try them?”

The main answer I got back is, “She needs to push those buttons and show us she making a choice. She needs to show she understands the abstract object to picture idea”

“She makes choices all the time. She pushes buttons all the time. I think she wants more from a device then picking out a toy or activity.”

“We haven't seen that.”

I then cited examples, “If I put her DVD wallet in front of her, she will look through the pages, and she lets me know which one she wants to watch. She has done this with books, toys and clothes since very young. She has a MP3 player made by playskool with a big button. She goes through pushing that to find the songs she wants to listen to.”

This was followed by a pause.

I finally said ,“I know that- in ten whole minutes once a month you get to see her you are not seeing the behavior you want. But I spend my days with her and she is past this.”

“OK, let me call some reps.”

“That sounds great.”

I, of course, had this epiphany at the end of the school year. Because of Hannah's age, we are switching from children's intervention services to special education service with Kindergarten. I think I will communicate better with them this time around.

Wish me luck!

By the way, if you need inspiration for dealing with your child's needs and the bureaucracy around us all you need to read Schuyler's Monster by Robert Rummel-Hudson.

--Mom

July 09, 2009

Let me put groceries away, please

Today Gabriel was talking almost non-stop to me.

“Hey Mom, I've invented a new game like rock, paper, scissors do you want to learn it?”

“Sounds great let me get these groceries put away first, okay.” I bent down and grabbed a container of blueberries.

“So here how it goes.”

He continued to talk, I was trying to put the groceries away while starting Hannah's feed. There were messages on the machine. I'm horrible about messages I needed to listen to them. As I started the microwave heating up Hannah's water I heard Gabriel say.

“So what do you think Mom?”

“Gabriel, I need to finish what I'm doing first. When I'm finished you can tell me about it. I'm thinking about a few things I can't listen to you right now.” I know this from experience where I have been distracted by Gabriel and throw Hannah feeding schedule an hour to half hour off.

He began again explaining right after I started the message machine. So I realized a friend had called and got some of the instructions for the game he invented. I put away the rest of the groceries. Then I realized I'd only done Hannah beginning flush. (When feeding directly in a feeding tube a certain amount of water is required for digestion before and after. Since it cleans the tube in the after it is known as a flush.) Gabriel continued to talk it sounded elaborate. Hannah was interjecting yelps and giggles. I went to get the feeding pump from Hannah's room. I set it up in place. I realized I also needed to fetch a new feeding bag for the day. It is something I could of grabbed when I got the pump.

Gabriel was still going.

“Gabriel, I really need a few minutes please, I want to listen. I need to get Hannah eating and start your lunch.”

He kept going. I sighed internally trying not to feel like the worst mother in the world. When I was younger I could of listened to him, stay on task, and not got distracted. (Oh, I just realized my blood sugar was most likely low too. That does make multitasking difficult.)

So I realized he was just going to keep going and I was going to ask him to repeat it all. I had already warned him several times that I could not focus on what he was saying.

Eventually, Hannah was contently chewing on a duplo lego, Gabriel was eating a peanut butter sandwich and I was eating some soup.

“So Gabriel, what is this game your trying to tell me about?”

“It's called ghost, human and flashlight. Maybe you could write about it on the blog tonight.”

“Well see.”

“Ghost defeats human, human defeats flashlight and flashlight defeats ghost.”I was impressed. Internally I ration that a ghost would scare a human, a human can use a flashlight and the light from a flashlight traditionally defeats creatures of the dark. “OK, how do you show them”

He stood his index finger and middle finger on the table to look like a walking figure. “This is a human!”

 

imageoffingerswalking

 

He suspended his hand above the table with his thumb and index finger touching. “This is the ghost see it flies.”

 

figershovering

 

He curved his hand with the thumb touching the index finger like holding a flashlight. “This is the flashlight he swiveled his had as if shining a flashlight.”

 

handcurved

 

“Very cool, Gabriel!”

“That's not it. I set up a playing board. We each have an action figure behind blockades. When we loose either the blockade is demolished or one of the figures arms go up. When both arms are up on your figure is used up and you lose. Toss it into the box.”

“OK, let's try it after lunch.”

--Mom

July 06, 2009

A Pile of Wood

Once upon a time, there was a pile of wood, a woman with a dream, and not a whole lot of time.

This pile of wood had been plaguing her every day for three years. In fact, her dining room table had a panoramic view of the pile everyday. It made her sad.

 

patiowithpileofwood

She would look at it all day long, and it would say to her, “You're so messy, even your yard and patio is a mess.”


Most of the problem all along had been time. When she started, she had a very sick daughter. And some help. But not enough to satisfy the pile.


Every free moment was devoted to her kids, particularly her sick daughter. So the dream of turning the pile of wood into a play structure had to wait. And wait. And wait...


Then, two years later, magic fairies called Bubbie and Zadie moved into town. Both the woman with a dream and the wood pile became happier. Zadie pitched in about a year ago.

 

structureframe

 

imageofframeplaystructure

unnailedboardstep

canweplaywithityet

Then, on the fourth of July, the pile of wood, a woman with a dream, and a Zadie celebrated their new-found independence: a dream completed.

gandzadieworkingonstructure

completedstructue

hanonswing

gabinclubhouse

momhangabswings

--Mom (Dad did a great rewrite)

July 05, 2009

A Moment

You know when you have A Moment:  a second where the world stops spinning you dizzy, sounds and motion pause, and you're just there.  Enjoying the there.  Forgetting the not-there.

I had one of those yesterday, July 4th.  Janette had just completed the play structure a few hours earlier, bringing a three-plus year endevour to a close.  I cannot imagine the joy she felt as both Hannah and Gabriel played on the swings, rode the slides, climbed (or were carried, in Hannah's case) to the top to look down.  Despite the heat, with the help of water and shade, both kids enjoyed the new play space.  More than that, the completion meant in many ways, we weren't in triage mode with Hannah.  We were moving forward:  a good independence theme for the 4th.

As evening set in, after the BBQ cooled, Gabriel and I went outside together, just by ourselves.  We sat on the swings, chatting about the day.  He was excited to start the fireworks when it was dark enough.  I was just enjoying the gentle sway of the swing.

Then I tipped backwards a bit, looking straight up into the sky.  An evergreen tree and our apple tree shook hands above me, parting fingers to let the dusky sky through.  

"Try this," I said to Gabriel, showing him how I tipped back to see straight up into the sky.

He copied me.  "Cool!"

And then there was quiet.  Just us, the trees, the cooling evening, the fading blue sky:  A Moment.  I held it for as long as I could.  Janette came outside to see what we were up to.  I encouraged her to try it, too.  She agreed it was a beautiful view.  Briefly, we shared A Moment.

Then it was gone.  I took a deep breath, refreshed, and I headed back inside.

-- Dad


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