Thursday, June 25, 2009

"Fill in your name here" is a Superstar!

One of our guys really enjoys getting mail and it is a powerful motivator for him. Several months ago, one of the behavioral analysts made him a sign (we joke that it's a billboard as it is rather large), laminated it and put it on a lanyard for him and stuck it in his mailbox. He doesn't wear it every day, but we've noticed that when he does, he often draws attention - wearing a billboard will do that - but it is great attention. People will say, "I hear you are a superstar!" or "You must be a really special guy to get a sign like that!" or "I wish somebody thought I was a superstar!" or "Nobody has ever thought I was wonderful enough to make a sign like that for me." These conversations leave him elated and encouraged. So today he was wearing this particular "necklace" (as he likes to call it) and it made me realize that sometimes we all need to hear that we are superstars to somebody. So to all my friends reading this blog, fill in your name and know that I think you are a superstar! (And yes, he is wearing a Razorback shirt. We are gonna have a house full of hog fans yet!)

Tuesday, June 23, 2009

I Wouldn't Change a Thing!

Joshua left last Wednesday to go to North Carolina for a ten day vacation with his G-Dad. He will go from there to Austin, Texas for a week at swim camp before he returns home on July 3.

Solely due to Southwest Airlines' cheap flights, we decided to let him fly alone on these trips. I have to admit, I was a nervous wreck on Wednesday waiting for him to board his plan. Of course I acted like I wasn't nervous a bit, because I think Joshua was already anxious enough for the both of us.

He was so relieved, as was I, when the plane landed and he immediately saw his G-Dad. So relieved in fact, that he let his mind totally relax and forgot to get his luggage. Yep, not entirely sure how one forgets to go claim their baggage after exiting a plane, but he did. When he called me an hour later and was on the way back to the airport, he was really upset and feeling stupid. It was a little hard to contest that, but being his mom, I assured him that this is something that happens sometimes and he shouldn't worry about it. (I mean, I am sure that at some point in the history of flight, someone else has walked out of the airport sans luggage, right??? Maybe??)

Once they arrived in North Carolina, he forgot about the luggage incident and got excited about all of the things to do in Montreat. Eating ice cream at the Huckleberry, boulder bopping in the creek, and hanging out with cousins. However, the fun ended and the anxiety came back the next day as he jumped into the creek with his cell phone in his pocket. Goodbye phone. Normally I would count that as his loss, however, as he is traveling three more times on an airplane alone before I see him again, the phone is more important to me than just about anything else. I sent my phone in the mail to him the next day so that he can have it during travel.

Last night he called and asked if I packed his toothbrush. Now granted, that would have been an okay question, say maybe Thursday, Friday even. However he is on day five of his vacation and just now looking for his toothbrush. Ugh!! What do you do with that?

And then, just when I am feeling like this kid will never have any sense of order in his head, I get an email from one of Lowell's cousins detailing how great Joshua was this weekend with the kids. The cousin called him an angel and said, "if I could bottle his temperament and sell it, I would make millions. That kid's amazing and you should be so proud of him."

And then a lady at church tracked us down to tell us how much she appreciated Joshua's help at VBS. She said he always used good manners and was always willing to help her with whatever she needed, even though he wasn't assigned to her room. When the kids who were working with her were not helpful, she could find Joshua and know that he would smile, say "yes ma'am" and do whatever she asked of him.

And then I remember the little girl with Down Syndrome who Joshua completely fell in love with at VBS. We have worked with adults with disabilities his whole life and he has on many occasions expressed a fear that he will have a disabled child. He came to me with tears in his eyes after VBS and said that he knows that if God gives him a kid with a disability, it would bring joy to his life and that he is no longer scared of that.

And I know that this young man, with or without luggage, with a waterlogged cell phone, and with some nasty unbrushed teeth, is the best thing I've got going. And I know that he is absolutely remarkable just the way he is. And there is no way, even if I could, that I would ever change a thing!

Monday, June 22, 2009

The Quote of the Day

Working and living here, we hear some crazy statements. I have begun to text Lowell and a few other people the quote of the day. It's always good for a laugh, so I thought I might include some here as well.

Q of the D from cardiologist (said very nonchalantly) - "What's the worst that could happen? Sudden death, that's it."

From the guys -

"I think that the 12 month subscription lasts around a year or so. Maybe a little less, maybe more, but pretty sure it's around one year."

"You don't actually have to have a clutch in the car to be able to pop the clutch. I can tell you how sometime."

"The place I was before, you know in the hospital, they fed me three meals a day. That was nice." (I guess when the short-term memory is failing, you don't remember us slaving away in the kitchen preparing your meals!!!)

The no-short-term memory guys also lacks a bit of a filter in the things he says, for instance, he has this conversation with staff recently:

Staff: "Do you have your seat belt on?"
Him: "Yes, do you?"
Her: "Yes, I have mine on, but thanks for asking, because sometimes I forget."
Him: "Oh, I didn't know they made them that big."
(What's funny here is that she really isn't severely overweight, but yep, he went there with her!)

And then today (when one of the guys was sick):

Staff to sick guy: "Something is not right about you."
Mr. NoShortTermMem: "And you just now figured that out?"

Sunday, June 21, 2009

The Phrase We Cannot Say

I've debated for several weeks now whether or not to write this post, or whether is crosses the line of too much information. But I've decided that if anybody reading this is really interested in my life, then this is what's really going on.

Things have been going relatively well at the house. The guy who does not do well with change has really done great considering we have a new weekend staff and a new roommate. However, when he is feeling any kind of anxiety, he is (rather than throwing things or pulling off the rearview mirror) expressing a desire to "pee in a cup."

A couple of weeks ago, the weekend staff knocked on the door and said that he was saying he needed to go to the bathroom but was insisting on having a cup. We replied that we only "pee in a cup" at the doctor's office. This seemed to be an okay response as nothing else was said.

Yet, in the last two weeks, this has been an almost constant request. It's odd, and it's even really funny, but it's also making me crazy. He hasn't had any other behaviors besides almost always asking to "pee in a cup." We have no idea where this came from!

We've tried not to make an issue out of this hoping it would go away, but last week we realized that it's not going away anytime soon. We went to the doctor, the cardiologist mind you, and he was really excited about going to the doctor because he would get to "pee in cup." We told him several times that this wasn't that kind of doctor and that he wouldn't need to do that because the doctor just wanted to listen to his heart. But he was bound and determined.

When we walked in the door, he immediately started asking about going to the bathroom. Staff took him and he wanted a cup. When he wasn't given one, he began threatening to pee on himself or on the floor. Even just writing that, I wonder how and why we do the job that we do. Crazy isn't it? Anyway, he was completely uncooperative with the doctor and his staff, but there was no way I was giving in because my thoughts are that if we feed into this even once, it's over!

He had a bad day all day. After we got his afternoon pop and came home for dinner, I thought he was settling down some. Lowell had grilled chicken, baked potatoes, and corn on the cob and made a salad for dinner. When we had the plates on the table, once again the request was made to "pee in a cup." The food flying began when he was told no.


There was baked potato and salad EVERYWHERE! And he just sat in his chair in the midst of the food, and watched "Little House on the Prairie" while I tried to point out that Laura Ingalls never threw her food.

The next day I met with two of the behavior analysts to try to figure out a plan to get this fascination to cease. We have decided to eliminate the phrase "pee in a cup" from our vocabulary and not to acknowledge him when he says it. I know it's not a phrase I use often (and maybe have never used outside of a physician's office), but I won't be saying it any more and we'll see how ignoring it goes.

Thursday, June 11, 2009

Theft by WHAT??

Crazy things happen here and I certainly get my fill of crazy quotes. But generally speaking, they are from the guys who live here. Today though, it came from our day staff, formally the cornstarch addict, who you will be glad to know has kicked the habit.

Anyway, she came in today telling me that she didn't sleep at all last night because her sister called and was frantic because the police were searching her house. She tells me that the police found a gun in her 16-year-old nephew's room between his mattress and box springs.

So the nephew was arrested (this wasn't his first run-in with the police, which may seem obvious since the police are searching her home in the middle of the night). So the nephew is going to jail and the sister is upset because she doesn't have anyway to get to the jail. Her boyfriend, who let the police in to search the house, took her car and was nowhere to be found. He wouldn't answer his phone and she was stuck at home and didn't know what to do. She finally got the boyfriend on the phone and he says something along the lines of: "I just had to get up out of there and lay low for a while cause the cops had guns in my face and I can't handle that."

So her sister understands, says "that's fine, lay low, but bring me back my car!" But the boyfriend doesn't.

So I'm listening to her finish up the story when she says, "I told her to call the police and report the car stolen, 'cause that is theft by conception. Girl it is theft by conception I tell ya!"

Yeah, ummm, thinking she is trying to say something along the lines of possession is 9/10 of the law but knowing that if I tried to speak I would laugh, and she is already upset about her nephew in jail and her sister's car being stolen. So I just nodded and politely left the room. I spent a good portion of the day pondering what "theft by conception" could potentially mean. But I won't go into details on that one.

Saturday, June 6, 2009

Happy Birthday Baby Boy!


I can hardly believe it, but it's true. Joshua is 13 today! Unlike most kids, he does not want to be a teenager. He's worried he is going to change all of a sudden and hate his parents. He is also worried about having one of those dumb looking pseudo-mustaches that some teenage boys think look cool. We have done our best to assure him that although those pesky hormones will kick in soon, it doesn't mean anything has to change. He will always always be my baby boy, no matter how old he is.

And although I will certainly miss some aspects of his younger years, there is absolutely no denying how much I truly enjoy watching him grow up. He is a most amazing young man. I know I am biased because I am his mom and all, but I have the great pleasure of often hearing how much others enjoy him too.

He makes me laugh. He soooo has my sense of humor. We just "get" each other. He loves others and loves them well. He is so exceptionally wonderful with the guys we live with. He is often better at teaching them than either Lowell or I are. He is respectful, kind, well-mannered and protective of those who need protecting. He understands when to stand up for injustice and he knows when to let unfairness pass.

Joshua handled our move better than either Lowell or I did. He's fun because he is, in so many ways, still just a little boy, but in so many others, he is wise beyond belief. On the days when we are most frustrated with the job or living in Kansas, he has provided us insight into some reasons things might be the way they are and he (generally) stays positive about it all. He is introducing us to our new community in wonderful ways. (How do people without kids ever meet anybody??)

I love doing school with him and watching him learn new things. (There are also many days when I think about driving him over and dropping him off at the closest public school I can find, because he is pushing all my buttons and making me crazy!)

And now he is thirteen years old. Wow! How time flies (whether you are having fun or not)!

I absolutely have no greater joy in this life than being his mom. But as he gets older, I am finding that being his friend is pretty amazing too!

Thursday, June 4, 2009

What kind of sandwich?

Today was the day! We picked up 51st (what Lowell has named him from the movie "Fifty First Dates") this morning and all went well. He was happy to see us and seemed to remember who we were (if not our names) and what we were there for. He was very pleasant. Told us a few of the same stories we heard the other day, but other than that he was very much 'with us'.

On the way home, we tried the discussion about favorite foods again, but were no more successful than we were on Monday. In a later conversation we mentioned that we get tacos on Tuesday nights. He said he liked tacos and I asked if he preferred Taco Bell or Taco Johns. He responded that either is fine, but he really likes Subway. Which did seem kind of non-sequitur, but we were definitely expecting more conversation deficits than that, so you know, whatever, we like Subway too.

We got home and unpacked his things and were hanging out in the living room when I suggested running to Subway and getting some lunch for us. He seemed excited about this so I asked what kind of sandwich he wanted. Then the conversation went something like this:

51st: What kind of sandwiches does Subway have?
Me: Oh, you know, turkey, ham, roast beef, chicken, veggie. What kind do you like?
Him: What kind of sandwiches does Subway have?
Me: Yeah, well, they have turkey, ham, roast beef, chicken, veggie. What kind do you like?
Him: What kind of sandwiches does Subway have?
Me (trying not to be irritated or laugh): Uh, they have whatever kind of sandwich you could want: turkey, ham, roast beef, chicken, veggie. What kind do you like?
Him: What kind of sandwiches does Subway have?
Me (looking at Lowell to help me out, but he is too busy being entertained): Well just tell me what kind of sandwich you like.
Him (and I promise I am not making this up): What kind of sandwiches does Subway have?
Me: What about if we just go get a hamburger instead?
Him: What kind of hamburgers does Subway have?

That is pretty much the actual conversation. He ended up with roast beef. He seemed to like it. We had a great, lucid conversation all through lunch but I know those "Subway moments" will be a very real part of my life for the next few months. Should be interesting!

Wednesday, June 3, 2009

Well, I went to IHOP yesterday

Finally, we are getting our third person tomorrow. Paperwork is signed and in hand and discharge is planned so it really should happen. Earlier this week, Lowell and I went to the rehab facility to meet him and take him some pictures of us, the house and his two new roommates. We were both pleasantly surprised with his level of functioning, even though he definitely has several noticeable deficits. The majority of the time, even though he often had to search for his words, the conversation was fairly normal for people first meeting. But it had its moments. Excuse the dialog, but I think you best get the picture this way.

Us: Hey there, we wanted to come meet you and introduce ourselves to you. We are Lowell and Heather and we will be living with you when you move, hopefully later this week.
Him: Yeah, they told me I will be moving soon.
Us: Well, we brought you some pictures so you can get an idea of your new home.
Him: It looks like a nice place and you seem like nice people, know what I mean?
Us: Yes, we are (just kidding). Yeah, it's a nice home. We came by yesterday to see you, but you were out with your brother. Tell us a little about you.
Him: I went out with my brother yesterday. We went to IHOP. He has a good job and makes $18 an hour. I have two kids.
Us: Tell us about your kids. How old are they?
Him: I don't know how old they are, know what I mean? They are in school, except they are not in school now.
Us: Oh yeah, so they are school age, but out for the summer?
Him: My brother came to pick me up yesterday and we went to IHOP. He has a good job and makes $18 an hour.
Us: Oh, so you like IHOP? What's your favorite food?
Him: They make the food here and serve it to us, know what I mean?
Us: Yeah, here in the cafeteria. But if you get to choose, what is the thing you like most to eat?
Him: Well they just bring it to you and you eat whatever you get. I have three brothers. My brother John came yesterday. We went to IHOP.
Us: Yeah, okay. So tell us more about yourself.
Him: I was in the army for two years and attended college for two years. I speak Spanish and English. It's good to speak two languages because it can really help you get a better job.

At this point, we are going, "wow, really lucid moment!" And then, of course, he says: "I went to IHOP with my brother yesterday. He has a great job and makes about $18 an hour."

I won't bore with further details of the conversation. Just know we heard, "know what I mean" and "went to IHOP" a lot in that one hour. We go pick him up at 9 in the morning. There is an IHOP right around the corner from the house. But I'm thinking we shouldn't go there for breakfast or probably even drive by it any time in the near future.