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.
First 2 from the Nov kit!
1 year ago