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Sunday, October 5

Doodle Bug

Doodle Bug.  My dear boy. :Sigh:



This morning, Doodle Bug is shirtless.  I have had this moment with him a hundred times.  I took a deep breath and said, "T-shirt.  Don't come downstairs without one."

He salutes, "Yes, ma'am."  (No idea why we salute, lately, in the same way that I have no idea why he was booty dancing all last week.)

We are forever re-learning a rule, a way to tie shoes, or how to punch in a number on the microwave.  His brain just doesn't hold information well.  He needs constant monitoring and prompting.  It makes me worry for his future.  Does a mother ever stop worrying?

There's randomness to his requests.  Out of the blue, he went on and on about a website that he has access to in his classroom.  He really wanted to show it to me.  We were driving in the car at the time, so I told him "later".  This morning, he drags his laptop downstairs and says "Okay.  Lets do it." 

I have no idea what he's talking about because 400 things have happened between then and now.  He reminds me of the game.  I tell him that I don't know the name of it; we'll have to ask his classroom aide what it is.  He'll have to wait until monday.

"No," he protests.  "It's w-w-w-dot-org.  It has kid's games.  There's a fighting game that R---- and I take turns on.  There's a ball and you get points."  And honestly, from his point of view, he's given me a boat-load of information.  It's too bad that the internet is seemingly infinite and I need much more specific information in order to find what he's looking for.


He got lost at Wal-mart the other day.  After finding him and calming him down, he told me that he was trying to find a person to help him.  "You know, like a 'ployee'."  He studied my face with the same focus he has when trying to discern if he's spelling a homework word right.

"An em-ploy-ee," I responded, pausing between the syllables.  

"An 'implee'," he tried to repeat.  However, a funny thing happens when he tries to focus on the pronunciation of a word... it falls apart in his mouth.  He shook his hands in one of the stims that has never really left him.  "You know.  You know, a person.  Works here."  I nodded and asked what he would have said to them.  He replied, "I can't find my mom.  She has a red thing on her back with black."  I hugged him and told him we'd fix it.  He was talking about my purse (at the time, it was a black organic cotton backpack with a sun on it). 

I bought cheap luggage tags and wrote a message on them.  It lets anyone who might read it know that my son is a Special Needs child and lists Papa J and mine's cell phone numbers.  I attach one to the belt loop of his jean whenever we go somewhere where Doodle Bug could become separated from us.


Papa J and I have had the discussion again, recently, about Doodle Bug living with us until we pass away and then with (or under the supervision of) his sister, Baby E.

A friend who works with adults like Doodle Bug has warned us not to cushion him too much.  In her line of work, special needs adults are often carted off to group homes after their parents pass away.  These 30 and 40 year old adults don't know how to do anything to care for themselves.  They never had to balance a check book.  They never had to clean their rooms.  They never had to cook or mow a lawn.  They never had to develop appropriate social skills because there was always someone speaking up for them.

We do NOT want this for Doodle Bug.  Our discussions of him "living with us forever" always include guidelines such as: "He will work or take classes."  "He will be responsible for buying his own food."  "He will have his own space and a washer/dryer." " He will care for his own pets."  "He will clean his house and make his own doctors appointments."

Of course, we will help him when needed, but independence is not something I want to rob him of. 

We envision him having a mobile home, with a permanent foundation, on our property or perhaps living in a nice apartment above our garage.  When we talk of him living with us, it is always like this.  On his own, yet near enough that he can just come in the back door of our house should he need something.  We feel him having privacy and responsibilities is important. 


I have so many fears for my boy.  I worry about him going out into a world that isn't always kind, that isn't always patient.

There are rays of hope, though.  He had an excellent swim instructor this month who seemed to instinctively know how to redirect Doodle Bug when he needed it.  At Pagan Pride Day, he found a group of children to pal around with and had a spectacular time reenacting Ragnarok while I chatted with some really cool folks.

:Sigh:  My beautiful boy with puzzles in his head.

Thanks for listening.

Love, Mama Stacey


2 comments:

  1. This is a truly beautiful post. You are doing great, Mama!

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    Replies
    1. Thank you. Everyday is a struggle, but everyday is worth it. And I wouldn't be a true mama if I didn't worry, right? LOL

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