FAMILY MAC

emscils598s07@yahoo.com (ebm) — Tue, 16 Jan 2018 23:35:00 +0000

MLK 2018

I had Matt over night this past weekend.

When I took Matt home on Monday around 5:30, I was greeted by three rather anti social and unhelpful male staff members. Matt’s bedding had been pulled apart – not clear if laundry had been done or not – and of course Matt was very distressed. I asked George who was nearby Matt's room – and he told me he had just arrived, that was all he kept saying, almost like throwing up his hands and saying don’t look at me not my problem. Then I asked James who sat in the med room and gave a similar answer but in a really surly way. He just sat there, barely speaking and said he’d just arrived.

So do I raise a stink and ask for a manager to be called? No, because I’m afraid for Matt’s well being after I leave. Not his safety but attitudes towards him. But he shouldn't come home to a ransacked or unmade bed.

Matt doesn’t fit into the mold at Virginia Manor – he doesn’t sit around and follow orders like a sheep. His needs are different. I feel so frustrated when I’m dealing with less than capable staff and knowing I have to leave Matt in a less than desirable situation. He has the right to feel comfortable in his home. He has the right to have his eccentricities embraced. And I know that some staff go out of their way to make this happen. Other staff should be put on notice that if they are not able to provide the interaction and support that Matt requires then they should look for a different job.

I realize some things are out of the manager's control. But I am going to start taking things to the next level to make sure Matt’s needs are all being addressed.

By the way he has recently put on a lot of weight. this may be from his midnight snacking or it may be that he is served tator tots every night. I don't know. But I also consider his health the responsibility of his group home.

emscils598s07@yahoo.com (ebm) — Tue, 20 Sep 2016 22:02:00 +0000

the boy that cried wolf. Or rather, the boy that never cries wolf. If Matthew complains pretty consistently to me that he sees a black spot in his eye, I believe him. How would he make that up? If he doesn't complain to staff at the group home, does that mean it doesn't exist? I find their nonchalant behavior callous.

emscils598s07@yahoo.com (ebm) — Wed, 30 Sep 2015 15:17:00 +0000

Ongoing staffing issues - who doesn't experience that? But when it involved a disabled adult it is hard to pin down when emotional abuse takes place. I let slip that an upcoming event is very important to Matt. I used it to try to get him to follow directions. But now fear that staff will use it over and over like a threat.

Staff (O) said Matt was getting physical - really? Or were they trying to get him to do something by putting his hat on his head or moving his jacket? Matt will react - but does he instigate? I have only seen him physical when being forced to do something he doesn't want to or if someone takes something that he feels belongs to him.

FAMILY SAGA CONTINUES

emscils598s07@yahoo.com (ebm) — Wed, 21 Dec 2011 18:50:00 +0000

come on - when do we get a break?

now it is my sister who is breaking our hearts.

what causes people to feel self imposed guilt?

I hope we make it to 2012

WHY DON'T YOU SEE HOW SMART HE IS??!!

emscils598s07@yahoo.com (ebm) — Sun, 23 Oct 2011 23:56:00 +0000

Matthew - an adult with Down Syndrome - has read like forever. He is 41 and he has been reading well over half his life. His vocabulary is huge. His spelling and writing not so good. He can't seem to recall words but when he sees them he can understand them.

For yet the hundredth time, someone at his group home wanted to put him in a basic reading class. Where is your head people? He reads! He reads the Arts & Leisure section of the NYTimes (Okay - he reads about the movies but he is reading). So I suggested that they deal with Matt using the written word. Encourage the reading and writing in every day events. Help challenge him since he is by far the most advanced special needs person in the house - and he is BORED.

Tonight on 60 minutes they did a program about the iPad and how it has helped autistic children. I think it might help Matt move to the next level. Perhaps there is a secret genius there just bursting to come out :-)

ABUSE CONTINUES

emscils598s07@yahoo.com (ebm) — Sun, 16 Oct 2011 17:45:00 +0000

I think it may be impossible to stop now that it has started - and it has been discussed with the two special needs individuals. I cannot help but think that even if they know it is wrong, they know it draws attention and that is something I think they crave.

So how do we get the individual to stop bothering Matthew? Even if it occurs infrequently, I can't help but imagine that he might be fearful or intimidated all the time.

FAMILY AND DOC TO MEET ARC SUPPORT TEAM

emscils598s07@yahoo.com (ebm) — Thu, 28 Jul 2011 00:15:00 +0000

Finally got it all scheduled - and now have SLiberi attending. Fingers crossed.

ABUSE?

emscils598s07@yahoo.com (ebm) — Thu, 14 Jul 2011 00:36:00 +0000

And what is the ARC's reaction? I am still waiting. I identified on Sunday night that there may be physical intimidation by one resident towards Matthew....very specifically regarding his private parts. Staff said an investigation would ensue.

I saw psychiatrist today to discuss but group home manager called in sick so we couldn't discuss with her. Matt described briefly the same scenario - of resident grabbing his nuts.

Doc wants to meet with ARC and find out just what will be done to address this.

Family not helping me. I can't do this alone.

HATS, BRACELETS, WHAT NEXT?

emscils598s07@yahoo.com (ebm) — Wed, 04 May 2011 20:20:00 +0000

Staff doesn't tell me anything - then manager says she calls me

I don't get messages so how can I resolve things?

NOW THE ASST MGR IS FIRED FOR RAISING ISSUE ABOUT STAFF?

emscils598s07@yahoo.com (ebm) — Wed, 04 May 2011 13:52:00 +0000

Of course the ARC denies this is the reason

but staff member filed several reports about verbal abuse. Is there a trend here????

cry for help

emscils598s07@yahoo.com (ebm) — Wed, 13 Apr 2011 01:11:00 +0000

I'm not sure what to do
13 messages

to all

Fri, Mar 18, 2011 at 9:07 PM

I have spoken to Matt the last three nights to make sure he is okay.

Tonight there was a lot of yelling. Matt wasn't really paying attention to what I was saying - I think he was watching this "crisis". I asked several times "are you okay?" and he said he was. But how often does this happen????

Is he frightened? I know he hates yelling. Is he stressed? How many yelling episodes before Matt possibly flips again?

Fri, Mar 18, 2011 at 9:41 PM

Maybe we should stop by more often.

Dave

Sat, Mar 19, 2011 at 7:02 AM

Without prior notice and without intentions to take matt out. Just drop in and give matt a hug

Sent from my iPhone

[Quoted text hidden]

Sat, Mar 19, 2011 at 7:10 AM

Sat, Mar 19, 2011 at 11:25 AM

Sun, Mar 20, 2011 at 1:38 PM

You can't protect him 24/7 and you certainly don't want to create animosity towards Matt by ratting somebody out. I know it's a tough call, but he probably tunes most of it out.

Sun, Mar 20, 2011 at 3:31 PM

I don't necessarily agree. I think some of matt's problem is the noise and stress at work and home. If we drop by unannounced at different times of the day, we get to witness behaviors. Doesn't take but a minute to drop in. I did it yesterday. If anything untoward is happening then we are matt's advocates and should protect him

in the meantime I am working to find some alternative places for him to go during the week, even for a couple of hours. I hope everyone is thinking about this and not just assuming that Matt will survive unaided.

Aunt Sue mentioned a time when Matt threw Uncle Jim's hat out the window. He is compulsive, yes. Yesterday Matt stole a pop tart at the group home. If we are in touch and in tune we can address issues immediately - not a week later.

I spoke Dr, Prasuna about a therapist. I think a psychiatrist is only good for 15 min and a prescription.

Red Bank Therapists

http://therapists.psychologytoday.com/rms/state/NJ/Red+Bank.html

just think about it - 12 feet!

http://www.thesurvivorsclub.org/extreme/surviving-accidents/queensland-australia-crocodile-attack-survivor

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Sun, Mar 20, 2011 at 3:50 PM

Dr. Lipton- he's the first on the list- I liked him very much

Sun, Mar 20, 2011 at 3:56 PM

would you be comfortable calling him?

I am going to try to setup the appt for next Tuesday for Dad. I will ask Jack and Dave to attend that. (Robert seems to be absent from this whole family support thing)

[Quoted text hidden]

Sun, Mar 20, 2011 at 4:19 PM

I doubt he would remember me. IWhat would be teh purpose of teh call- jsut ti find ou if he would see matthew?

Mon, Mar 21, 2011 at 9:49 AM

and this was supposed to go to you......

oh my God, i can't believe how bad my typing is getting. Anyway, did you want me to call to see if he is taking on new patients- do you want me to actually make the appt.? let me know.

[Quoted text hidden]

Mon, Mar 21, 2011 at 10:21 AM

yes - see if he is taking new patients and if he would consider a Down's Syndrome adult. I will call to make appt - thx

lets celebrate birthdays a week from Saturday. No point in this sat since I work and you work sunday.

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Mon, Mar 21, 2011 at 10:44 AM

disrespecting staff

emscils598s07@yahoo.com (ebm) — Fri, 08 Apr 2011 18:18:00 +0000

antagonizing his peers. Wazzup with my pal????

THE AMAZING MATTHEW

emscils598s07@yahoo.com (ebm) — Fri, 04 Mar 2011 02:12:00 +0000

I know - it may only be amazing to me. But the man continues to touch my heart.

I used a word he didn't know. Can't remember now what it was. But he thought for a moment then asked me what the word meant. He repeated it and wanted to know the definition. He didn't just ignore me. He tried to comprehend a new word to add to his listening vocabulary.

We were having a particularly trying day with Dad. Trying to get him dressed and he kept lying back down on the bed. Finally Matt looked at me and said "he's a basket case". I felt sad but also tried not to laugh. And then I thought about it.....Matt used a slang phrase accurately and just pulled it out of his hat.

Matt likes gift cards. I have a VISA gift card that belongs to Matt. I had to go online to check the amount then I told Matt how much he had on the card. An hour or later he asked me for the hundredth time if I would buy him some Aveeno shampoo. (I made the mistake of telling him that it is good for an itchy scalp and he has decided all those bottle of Head & Shoulders he had me buy have been replaced by another brand but I digress). He said "they are on sale at Rite Aid". So I asked him who was going to pay for them. And he responded - "you can use my VISA card". I think this took some analytic skill to piece all that together.

Am I the only one who thinks he is The Man!

DOES YOUR DAUGHTER HAVE DEMENTIA?

emscils598s07@yahoo.com (ebm) — Tue, 05 Oct 2010 01:15:00 +0000

I was exasperated.....I get so annoyed with people these days. When the nurse somehow jumped from Dad's lack of appetite to her young daughter I had no patience. So I inquired whether her daughter too had dementia. I thought it was pretty obvious why I asked it. But she looked at me like I was an idiot. Then her eyes narrowed and she got a suspicious look and she reverted to "the book". It is all documented in the book on dementia. Fine, thanks.

ANOTHER CRISIS

emscils598s07@yahoo.com (ebm) — Sat, 18 Sep 2010 00:54:00 +0000

Matt tried reaching out to me last night, asking when he would get to see me. I am pretty strung out with all this job stuff and I told him not until this weekend could I manage it. He asked if we could do brunch on Sunday, brother/sister, and I said I would have to let him know. Then, in the background at the group home I heard someone call his name and he hung up. God, in hindsight, I think about all the possibilities of verbal abuse that might be going on

I got word today that a staff member may be calling Matt names, teasing him - what if he was reaching out for help and I didn't come to his aid? What if something has been going on and nobody was paying attention.

I am glad this week of work is over. I really will have to think long and hard about this.

WHO, WHO, WHO?

emscils598s07@yahoo.com (ebm) — Sat, 17 Jul 2010 15:51:00 +0000

ME: Who are you talking about? Who? I don't know that person. Say the name again...who?

MATT: What are you, an owl? stop with all the "who's"

I nearly drove off the road I laughed so hard. Matt just keeps surprising me with his knowledge of words and the correct usage of them. Last night he told me I looked "distinguised". I guess that is better than being told I look like Angela Lansbury.

LITTLE MATTHEW IS AGAIN IN HOT WATER

emscils598s07@yahoo.com (ebm) — Mon, 21 Jun 2010 12:38:00 +0000

Not just a tussle this time. Seems he slapped a staff member across the face. Not just any staff member of course. The one staff member that I had brought to the attention of residential management. The staff member that manages to ignore me as best she can while still carrying on her duties. A staff member that seems to want to control the details - and gets frustrated when she can't. A staff member perhaps that has been getting under Matthew's skin. I don't know.

I do know that Matt said "she grabbed my arm and I slapped her...."

I don't believe staff are supposed to touch residents....

SO HE HANGS UP ON ME?

emscils598s07@yahoo.com (ebm) — Sun, 20 Jun 2010 15:44:00 +0000

It's my house. Basically. I've been moving for weeks and weeks. And now he wants the key to the house so he can get his frying pan?

I apologized and said that I cleaned up everything that was in the kitchen and put it in a box in the garage. I've been transporting things to MONARC, Val took a box - there is a box waiting for Love, Inc. of more stuff. I don't know anymore if his frying pan is there. He kept emphasizing that it was a non stick frying pan - and what, that means it must still be there? And can he have my key and go get it?

This is just a little weird.

FAMILY DAY

emscils598s07@yahoo.com (ebm) — Sat, 19 Jun 2010 11:15:00 +0000

*
Sometimes it is nice to have brothers. They haul, they climb, they carry, they lift (some even cook and plumb and elect). Even though you have to keep your tongue and perhaps be extra nice, I am lucky to have them.

And sometimes we even break bread after wards and enjoy each others company. Nice to have family.

LIFE IS A DRAG!

emscils598s07@yahoo.com (ebm) — Fri, 18 Jun 2010 01:55:00 +0000

Matthew: I'm tired, I'm bored and I'm hot - life is drag. What can I do? I want to get out of the group home and live on my own.

Me: Let's go swimming. ( it kinda worked. he was much happier afterwards....phew. Dodged that bullet yet again )

*
*

I LEFT THE GOAT CHEESE SOMEWHERE...

emscils598s07@yahoo.com (ebm) — Mon, 14 Jun 2010 02:07:00 +0000

I CAN'T FIGURE OUT WHERE!

Brother - is that going to be a stench when I find it. I packed a couple bags this afternoon with my contributions to a social tea....cheese and crackers, cookies.....and tried to find plates and platters that would look nice. I wound up lugging two big bags - ice packs, a knife, a platter that was huge, crackers for an army. I hate to attend an event and bring too little. But too much is a big waste of money.

anyway, the point of the story is I packed up and somewhere along the line I remembered I had goat cheese - only I didn't. So watch out hostess, watch out car. One day I'll find it. Yuck!

IT IS 12:00 - IT MUST BE LUNCHTIME

emscils598s07@yahoo.com (ebm) — Fri, 11 Jun 2010 13:56:00 +0000

I try not to eat meals according to the clock when I am with Matt. I try the concept that eating when you are hungry is a good practice.

I also try - no success - convincing him that cleaning your plate is NOT necessary. Eat until you are full then stop.

But as Jimmy B said, Matt is an eating machine!

I won't be your caretaker - which part is hard to understand?

emscils598s07@yahoo.com (ebm) — Mon, 07 Jun 2010 23:29:00 +0000

Today for the hundredth time I explained to my Dad that he needs a full time caretaker if he is to come home. Someone who can administer his insulin and monitor his other medicines.

He wants me to elevate my job hunting efforts but also wants me to cook and clean for him.

How can a formerly brilliant man have so much difficulty understanding the obvious?

Selfishness comes to mind.

Chin Hairs

emscils598s07@yahoo.com (ebm) — Mon, 07 Jun 2010 14:36:00 +0000

OMG! Where do they come from?

I finally flipped my mirror over to magnify this morning and there was a long black hair sticking way out of my chin! How many people saw it? Why didn't anyone say something? I am mortified!

Just a little stressed I guess

emscils598s07@yahoo.com (ebm) — Sun, 06 Jun 2010 23:18:00 +0000

I was at a workshop on genealogy all day. Last weekend I went to my college reunion in Massachusetts and took my brother Matt with me and dropped him at a cousins. this past week I presented an award at a local high school. last week I volunteered at an American Red Cross Gala event. I am a member of the Friends of the Library and I am also a friend to Matt and take him swimming every week.
Tonight I took my Dad to dinner and on the way home he pee'd in his pants. I am in the process of moving to his house because I can't afford to pay so much rent any more. And he thinks he will move home too - what, so I can take care of him? I am hiring movers because my family just can't commit to helping me move my fathers stuff so I can put my stuff in the house. It is all a bit much at the moment.

stopped at the house today and found that not one but two siblings had been in the house and took just what they wanted - effectively leaving the rest of the dismantling to me...or so it seemed to me. No notes, nothing. Just a few gaps in amongst the carnage of furniture and boxes.

Guess I am truly on my own - until of course they complain about something that I am supposedly responsible for!

No wonder I have developed shingles!