Child-proofing & other thoughts...

[Guest guest]

Ben turned 23 yesterday. Reading these posts is like reading the journal I never

bothered to write about Ben's life. A couple of thoughts and a question:

#1: When Ben was younger, around 10ish - we were advised to test him for

'Prader-Willi Syndrome'. He wanted to " eat-everything / all-the-time " . He

would get up in the middle of the night and polish off a full gallon of milk.

He would pull raw pork out of the freezer and gnaw on it. Eventually, the very

foods he craved were the foods he became sensitive to, in the form of almost

instant loose stools. I've not sent him through official allergy testing, but I

know what I've read and I know what I see. He has become wheat & dairy

SENSITIVE. and I limit his diet EXTREMELY, but yesterday, on his birthday, we

all had stomach upset,,, cause we had lots of wheat and dairy fun!!!

I tried to document once (on his school forms) that I KNEW (as a mother) that

he was bothered by wheat & dairy, and the school district contacted Ben's MD,

and the doctor verified that Ben was never officially diagnosed with a food

allergy, so they loaded him up with garbage every chance they got and then

called me and told me he was sick & to come pick him up. I am SOOO glad the

'School Days' are over!!!

Child-proofing: About age 12 (1997)...We moved into a new home, and Ben

continued to be OBSESSED with food & other things. We changed every door

'entry-lock-set' in our home (EVERY ONE) to lock from the outside, so Ben would

not be able to get into closets, private rooms, food (we put a lock on the

pantry, fridge & freezer). ALL of the keys in the house were 'Universal' & we

all had to agree that no one would enter any bathroom or bedroom without

'knocking'. Ben ALSO had an obsession with water - running water - and the

paper towel and toilet paper rolls.

When Ben was obsessed with running water (middle school years), and before we

started using locked doors, he would get up in the middle of the night and turn

on every faucet he could get his hand on, turn them on at full-tilt, and go back

to bed. At one point, I thought I was EXTREMELY clever, and that he would not

be happy if his water did not fill-up the sinks in the kitchen & tubs. so I put

a cookie sheet across the kitchen sink (not sure of my reasoning at the time) .

Anyway...the sink didn't flood so fast as the kitchen floor did.

And my Question: I am in Wisconsin. Ben is 23. What is anyone and everyone

doing about assisted living in the private sector as opposed to the 15 YR

waiting list in the public sector. I've read posts from people who were advised

to register their kids at birth on waiting lists, and unfortunately, I was not

given that advice and am now one of 'those slackers'. Not for a lack of

interest, but for a lack of guidance and trusting that everyone who works in

'the system' is pointing us in the right direction, but I no longer believe that

is true. Ben's broker has just gone on a 3 month maternity leave and I am

panicked at how 'casual' things are as his job situation is a disaster. Any

thoughts from anyone?...

SideNote: Ben's biggest obsessions today are ; music; ,Raffi, Sesame Street,

Grease, Annie, and not many more than those sound tracks...Word Search & Soduko:

I have to believe that it is the number & pattern sequence, and I don't know

what it is. He tries to read the word find books and wants us to sound-out

entire lines in them, but I'm not sure what he see's in Sudoku.

He sits at our dining room table constantly: He throws dice, sorts Scrabble

letters, etc...kind of hard to explain...we call it 'tapping'. He loves to hear

the sounds of different small objects on different surfaces, like quarters on

cookie sheets - Yes - he does have a 'Money Jar'. Thanks for listening - I get

tired just writing about the boy...

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