Thankful

Meghan, Tim's Care Coordinator, called me and left a message on our voice mail today.  I had spoke with her this morning regarding Tim's possible move to Rush.  The move is on hold!!!!  She said PT is going to reevaluate him on Tuesday.  If he's doing well walking, he will be staying at his home in Newark for now.  Praying that he walks well. :)

Confused

So on Tuesday while I was at work, Renee from DDSO called.  She left a message on my voice mail about moving Tim to a house in Rush... because he isn't walking well (she says), and it's a dire emergency to move him at this time.  There are a few problems I have with this.  The house is NOT a home.  It looks uncared for and uninviting from the outside, just a dull place in the middle of nowhere.

The inside leave much to be desired as well.  It's large, echoey, and cold, and I don't mean just the temperature, but the whole look.  To top it off, I was told by someone that the residents there are low functioning.  My brother is not.  Of course, my sisters and I are against the move, but it's being forced.  I was on speaker phone Wednesday morning with Renee, Kim, and Wes King, all trying to persuade me of how badly Tim needs this "for his own safety".  BUT every time we see him he's walking great, and I told them this.  It was to no avail though, as I was once again told that he trips over the thresh hold, can not do the stairs easily, and shuffles his feet, causing someone to need to walk with him at all times.  I ended up in tears, and decided to pop in on Tim for a visit later that afternoon.  When I got there, he was having a fit as Erin was putting a Depends on him so that he could go for a ride with me...I have them do this because he has wet my car seat on a few occasions.  She hadn't told him I was coming because I had failed to say exactly when I was going to be there, and she didn't want to overly excite him.  When he saw me, he instantly settled, grabbed my hand, and we were off!  He had no trouble walking, in fact he practically ran down the front steps, his hand in mine.  Once again I was failing to see his difficulty walking, and the emergency to move him out of the home he has known for 20 years, aside from a 3 year stint in a house across the street when he was put on a med that suddenly took away his ability to walk on his own.  "Is he on a new medication?", I had asked at the time.  "Nope, nothing new", I was told.  Very shortly after he was moved his ability to walk suddenly came back.  When I inquired as to why he had lost his ability to walk and then regained it as if nothing had ever happened, I was told, "We took him off of the new medication".  But I thought he wasn't on a new med?  We had been lied to.  They moved him back into his home 3 years later when an opening became available, but a few short months later he "tripped over the leg of a chair" and walked with a limp after hurting his lag when he fell.  Since that time they have said his walking has gotten worse and worse....although we don't see a problem at all.  I have been told he has "Athritis in his spine" and "He has a drug induced Parkinson like disorder that's only going to get worse". "He's not on any new meds", we are told once again.  I did talk to Tim about the whole situation as we drove down the country roads through Yates County.  I told him that we don't think the Rush house is a good move for him, and he told me he doesn't want to move.  Upon our return back to his home, he took off for the bathroom (unassisted) to remove his Depend, and came back to the kitchen (unassisted) to usher me toward the door.  He did not shuffle his feet or seem unsteady.  I'm thinking they want to move him to make room for someone else.  We are praying that God allows him to stay where he is until something opens up with Heritage homes.  I wish they would return my calls.

This is us a couple of weeks ago on our visit.  I love him,

Pondering...

After hearing he had a bad day the day before, yesterday I went to see my brother.  He had a purple, swollen ear from hitting himself, bruised cartilage, they said.  He excitedly took my hand and we walked out to the car together.  I hadn't even had a chance to sign him out yet.  As we walked out to the car I asked him what was bothering him, but got no response.  I'm used to it. That's normal for him, he's autistic. We got in the car, and he ate the treats I brought for him...a banana, some peanut butter pretzel bites, and Oreo thins.  As I drove along the country roads, we listened to a CD of my dad playing his guitar and harmonica.  Tim cried off and on, which means I did too.  At the end of our ride we stopped at Wendy's to get a small chocolate Frosty.  As usual, he ate it at warp speed.  After he's finished I usually take him home, but I had brought my tablet to see if I could get him to "talk" to me on it. (I haven't done that in a long time because he doesn't usually do anything with it) I asked him what was wrong as I handed him the tablet.  He looked at the screen and swirled his finger around on it, without actually pushing the separate letters, and handed it back to me.  Fully expecting there to be nothing legible on the screen, I read, "home".  I told him what it said and asked him if it was a mistake or if he meant to say that, after all, I had no idea you could write something that way, but I tried it afterwards and found out I learned something new!  He looked me in the eye and said, "Home".  He wanted me to take him home... or so I thought.  Maybe he did, but my sister said that maybe home is what's bothering him.  I was so sure he didn't want to tell me and just wanted me to take him home (and maybe that is the case), but now I need to go back and find out what he meant.  They want to move him to a new home because he's not walking great these days, so maybe he's tired of hearing about it, or dreading it (he was abused at the last one) or something.  In any case, he talked to me, and that is something I always treasure.