Monday, August 24, 2009

Day 452 - Aug 24, 2009

Kevin went out with my sister and her family tonight to an arcade and I guess he had a blast. He really had a good day all around. He went to therapy today and it went well both times, he swam in the pool for a while too, he got shaved ice from the ice cream truck and then he went out with my sis. And to end the day - surprisingly - he came home and stayed in the living room to watch tv for almost an hour and a half. Kevin never stays in the living room - he always goes into his room and shuts the door because he keeps his TV on mute most of the time.

Anyway, I sure wish all of our days could be this great, but I know that's not possible. Not yet anyway.

I want to quickly tell you that Kevin is saying more words now too. Some of his new ones are blue (boo), banana, cheese, watermelon, shoe and bread. He has been trying to say his name so hard too - he says it like "Kenin". It just makes him so mad every time he says it.

And now I am going to try to catch up on some of the questions/comments:

Suzanne in Adrian - to the best of my knowledge no therapists have ever mentioned music therapy. Is that part of speech or is it a separate entity? Do you have to have a music therapist or can every speech pathologist do it? I would be interested to hear more.

As for a male aide - it's apparent that that's not going to happen. Kevin won't allow a male to touch him and a huge part of his having an aide is to help with his burn garments. If you remember, we did have one in the beginning, but he wouldn't allow the guy near him and he finally 'told' me that he wasn't going to allow a guy to rub his body with lotion. I can respect that.

I do think it's a good idea to have a male around, but I talked to the Marine mom about going to the VFW or something like that to find someone that would be willing to come in every so often and be 'friends' with Kevin, but she had already looked into that and there aren't any young people available for it.

I am hoping that the wounded Marine might make a difference, but I'm not sure. JT has issues as well and Kevin may not be so tolerant of them. BUT, then again, Kevin may be just fine with everything too. I guess we'll see...

Lisa D in CA and Long Time RN - so far I haven't utilized any form of support. Mary (FRC) gave me a website though that has a support group in the South Tampa area and I plan to look into it. We have gotten to the place where Kevin can be left for small bouts of time and Breezy and I can take off for whatever reason. This can't be done often yet as we are still working through the separation anxiety, but we are making progress.

Patricia - your posts are always so knowledgeable and insightful. I think I missed something somewhere...did you go through this type of thing with someone close to you? I am so sorry if you already mentioned it. Chances are it just went right over my head.

Jan - you asked what Mary says about year 3? I don't think I want to know, lol!

Miss Em - you mentioned Kevin needing to feel he accomplished his mission (therapy) each time and that makes me think of something I read today in "Over My Head". It mentions this person needing a goal and I think that is a big part of what Kevin needs. He needs something to focus on, something to strive for.

At this point - I would love to hear suggestions from all of you on possible goals for Kevin. I am already thinking for him to skate in his skate park by next summer, but I am sure there are many things I'm not thinking of. I want to throw out some suggestions to him and have him decide what is most important and then we can work on it as a family. Any thoughts are welcome.

Hallie - sometimes I feel like it's one step forward and twenty back. I know it's all part of the process, but I just want it all to go forward and keep getting better (and easier).

Jessica - I do believe that Kevin understands when he is reprimanded for his behavior, but I can't say with certainty that he remembers it even 5 minutes later. I think there is a good chance that he does forget (as he often does).

And now I am going to go and watch some mindless tv. I finally got mine hooked up in my bedroom yesterday so I can lay in bed and not have to worry about falling asleep as soon as I turn the thing on. That's what normally happens.

8 comments:

Holee said...

I didn't mean an aide to replace the aide he now has. I meant an aide or companion hired to just spend time with Kevin. To separate him from you. To "hang out" with him like the friends did in Pa. when he was here.

Maybe someone who would get in the pool with him, toss a beach ball to him, take him to the mall. A male who has no medical issues and would just be a pal.

For children it would be called a nanny. For older people they call them companions. For Kevin you could call it his buddy. He really needs to be socialized with guys his age. Maybe if the aide wore cami's as a uniform, Kevin would respect that and his anger wouldn't surface until he got use to his new buddy.

Anonymous said...

Leslie,
I found this web site that states that music therapy is used in hospitals, nursing homes and even schools. I have read the FAQs and I think that it may benefit Kevin. Here is the link:
http://www.musictherapy.org/faqs.html#DESCRIBE_A_SESSION
It also states that it helps enable better moods, which I think would be a plus.
I hope this helps.
Suzanne, Adrian Pa.

Anonymous said...

I'm so glad Kevin had such a fun day and was in a good mood. That makes everyone happy! :) I really hope it continues today.
That's great that he's learning some more words too!
Can't wait to hear about your day, hope it's a good one!
Take care,
Kathy in IA

Patricia said...

Leslie ~ To answer your question...Yes, someone close to me was hit by a drunk driver nine years ago, this week, in fact. The EMT's did not think he would make it, and even the State policemen who was at the scene came to our home, because he did not believe he survived. His injuries are NO WHERE near Kevin's. I want to make sure you know that. NO WHERE near. But there are aspects of TBI, that run true in all cases, albeit to different degrees. Word loss. Personality change. Lethargy. Frustration. Because the injuries, were not as severe as Kevin's, he has learned to adjust, does not take the meds anymore, and for all intents and purposes, is back to normal. However, the person changed. Normal is redefined. That is what I meant when I said, the caretaker's personality also goes through a change. Not a bad one. It just does. Also, with all of this, develops a protective side. That is why I have not mentioned who it is. My knowledge of TBI, came at a sacrifice. I am very protective of it. Just as you are with Kevin. And that is one of the reasons I admire you so much, and your family. YOU are educating everyone about the pain and joy of this sacrifice of Kevin's.

But, when I read of a frustration, or day that sounds painfully familiar, I offer what limited insight I can. To let you know, there are those who understand, at least in some small way, what you go through.

I am very glad the day was a good day. Leslie, trust that the good days will begin weighing out more than the bad. And Normal WILL eventually be more "normal". One thing I learned to appreciate was TIME. There will be time, and in that time will come more recovery.

Love, hugs, prayers....always.

Jessica said...

It's always so good to hear about Kevin having a good day. And I don't think I've mentioned yet how wonderful I think it is that your sister moved to FL to be near you all. What an amazing family you have!

Take care. You're always in my thoughts and prayers.

Miss Em said...

Leslie,

Holee has a really good idea. Especially about the Companion in Cami's.
Maybe starting out part-time to see how it goes????
You might check through the Red Cross.
Or try talking to advocate/advisor at the Hospitial she/he may have an idea of where to find one.
And then there's Your local Soldier's Angle who may have some leads too.
It's too good of an idea to let slip away.

GOOD LUCK.

********

Mission. Mission? Mission???
[perplex look on face and big sigh = ;-{ ]

BLANK---BLANK---BLANK---BLANK

My great idea and I am now having trouble coming up with a "Mission Project" that would be interesting and doable. I will keep scratching my head and pushing the gray goo-eee matter around some more and see what slithers out.

O-KAY??? Maybe???

Well here goes. I hope that one might be of use now and the others become a "work in progress".

#1
For any day during the week do a surprise "Field Day"[clean room].
Remember the Kitchen and how pround he was when you said job well done. Never the same day or the same room. Even cleaning the patio/pool area is/would be a "field day". Using the military term "Today is 'Field Day' for_________"[insert name of area]means "mission" which he may react better to than, "Go 'clean' this _________."[i-n-o-a]

Maybe a "work in progress"
#2
Fixing a lunch for you, Breezy and himself using different colored plastic picnic plates for each of you so he doesn't forget anyone.
It should be a VERY simple lunch--NO COOKING--but one that he has to do on his own. Even if it's only peanut butter and jelly sandwiches with milk as long as he and only he does it. Kevin would also have to serve the lunch at a table either in the kitchenett/dining area or out on the patio.
**Maybe you might be able to find some way of getting your's, Breezy's and Kevin's picture on the plates for easy recognization. Just a thought. And no, I have no idea where it could be done at.**

This one is definitely a BIG "work in progess" and I will leave the decision up to you for you will know if Kevin is even close to this one. If not, save this one for another year.

#3
Save the labels from the boxes, can and bottle when you buy the groceries. Now, cut the pictures from them and put them in plastic
3-hole binder cover sheets and into a large "holding" ring binder. Then move the ones you will have him using to a small-ring binder with Kevin's picture standing outside of the grocery store on it. HIS "mission" is to gather these items and put them in the basket for purchase. Make certain that when you start this that most of the items in Kevin's binder are what HE likes to eat[sweets/snacks/etc-including some of his man things] which should make the "mission" less disagreeable.
HOPEFULLY???
As time goes by with this add some of the other sheets that would be in the same areas that would be normal groceries.
*This one will mean that he has to go to the grocery store with you or Breezy. You or Breezy should have the large binder with you so it looks like you are using it also to aid you in the finding process. It should help in his not feeling/looking strange.
I know I can hear you now saying that just extra crap we have to carry/manage but if Kevin sees you with it he may surprise you by wanting to see what next in the large binder and try to find it before you do.
**FUN IS HALF OF THE PROCESS.**
Fingers crossed here.

There is NO getting out of it because....
NO groceries[sweets/snacks/etc]..
NO eating OR man things.
That might help get the "mission" across in difficult times.

I will keep thinking about "Missions for Kevin".

It will be interesting to see what others will come up with all the while hoping that they are doable with his TBI.

Mother KNOWS best especially with the "Missions Project".

Miss Em
Austell, Ga.

Oh and don't forget to take care of yourself too.

Miss Em said...

Leslie,

I got so tied up with thinking about "Mission Project" that I forgot about the most important
up-date...NEW WORDS.

YEAH!!!!!!!
CHEESE CAKE TIME.!!!!!!

I have heard of "Music Theropy" for people who stuttered. Singing the words helped in getting the brain to work easier.
It might seem strange to some people or even annoying to others... BUT ... who cares what others think as long as it helps Kevin to speak his words. That's what is important.

"Kenin"...
When Kevin says "boo", "bread" or "banana" does the 'b' come out plain. If it does then get him to say 'Keb-bin'. The 'b' and 'v' sounds so close that most people will just think he is saying the 'v'. I think it's close enough that Kevin might even think he said the 'v'. Later as Kevin starts to say the 'v' than he should be able to say his name with the 'v' instead of the 'b'.
Just a suggestion.

Let Kevin know that I believe that he is accomplishing his missions with style and grace.

Now where did I put that Cheese Cake????

Miss Em
Austell, Ga.

Vicki C said...

SO glad to hear it was a good day!