Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 You might get some different ideas from looking at SPECIALNEEDSHOUSING People around the country are discussing what kinds of adult options are possible. Have you looked into CAMPHILL? I believe there is a CAMPHILL VILLAGE in the Northern Central states. Theya re private, have homes in which a family lives with other " friends " and people with disabilities. There are various kinds of simple work on site. (baking, dairy, weaaving, organic small cale gardening, etc.) We never had the eat everything issues with Elie (now 22). His food idea is that everything be the same and all protein be sandwiched. And that there be two's. ELie loves the same music as Ben, plus opera and THe three tenors, the four tenors, any tenors. HE is currently hooked on the movie (not cartoon) of Oliver. " Boy for Sale " is the favorite son this week. Elie goes to a day program which has a sheltered work component. Elie pretends to work for an hour or two, but most of his day is spent making other people feel good or listening to Sesame street or the 3 tenors on his headsets. Our kids are more alike than not! > 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... > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Yahoo! Search. > > Quote Link to comment Share on other sites More sharing options...
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