Screaming

If you have read very many of my blog posts, you may have the impression that there is a lot of screaming that goes on here with Kimmie.

Well, I suppose you could look at it that way, but there's not as much as it may sound like.

And we're used to it, so we mostly just shrug it off.

And when Kimmie smiles or laughs or giggles, well, you just forget all about that screaming.

--Mom

Disney World - Aladdin

Sometime over the past year, Kimmie made the connection that the Disney animated characters are at Disney World. We have pictures from our trip to Disney World in 2000, of Kimmie hugging Eeyore and Tigger and Baloo, but she didn't seem to grasp where we were and that we could go back.

This year, when she figured out that Disney World is where the cartoon characters live, that's where she decided she wanted to go. From the very first time she said she wanted to go to Disney World, it was specifically for the purpose of hugging Aladdin.

I did some research and learned that Aladdin and Jasmine can usually be found at EPCOT in the Morrocco section of the World Showcase. Sure enough, when we came to Morrocco, there they were along the lake greeting kids.

The characters that we saw during our trip in 2000 were animal characters where the costumes are over their faces. With Aladdin being a "face" character, I was concerned that he wouldn't really look like the animated Aladdin. But, as you can see from the picture, he looked very much like the cartoon, and as far as Kimmie was concerned he was Aladdin.


Jasmine was a little disappointed that Kimmie wouldn't have anything much to do with her, but she quickly realized how special this was to Kimmie. Jasmine enjoyed watching Kimmie right along with the rest of us.

There were some flowering bushes next to where Aladdin and Jasmine were greeting folks. As Kimmie was leaving, Aladdin picked one of these flowers and presented it to her.



Kimmie has framed pictures in her room now, so she will always remember this special day.

Our only disappointment was that the Blue Genie was not available to greet. We inquired at both EPCOT and Magic Kingdom and were told at both places that he was taken off the greeting schedule. But we have recently learned, from some relatives in California, that Disney's California Adventure park has an Aladdin musical production show that is outstanding.

Hmmmm.

--Mom

P.S. Happy Birthday, Kimmie!

Disney World - Swimming

While at Disney World we took Kimmie swimming three times. She loved it!

The first time we took Kimmie swimming, I went in with her. She likes to wear a float vest. We like her to wear it, too. It's nice to have that little bit of extra security. However, we still need to be in the pool with her, and the vest is not foolproof.

Kimmie was wound up pretty good that first day we swam. I was adjusting her float vest, and she had that mischievous glint in her eye. She was laughing, and pushing and wrestling trying to get away from me. Of course, she's wet, I'm wet, and eventually she slipped out of my hands. While still laughing she splashed face down in the water. I immediately grabbed and yanked her out of the water. I caught Dad's eye and he rushed over. Kimmie was coughing and sputtering. I lifted her up to Dad who raised her up to sit on the side of the pool.

I have to compliment Disney on their lifeguards. They are very attentive. One was at our side before we could blink. He was offering to bring over oxygen for Kimmie, then he offered to call EMS. He assured us that there is no charge for an EMS call. Disney pays for it all.

Kimmie was coughing, but she was also breathing well and her color was fine. We assured him that Kimmie was ok, she did not need oxygen nor did she need EMS. He was very persistent telling us that she could be dry-drowning. By this time Kimmie was breathing normally in between coughs and signing "swim more, swim more." The lifeguard offered to call EMS three times. We finally convinced him that she was fine. Kimmie was fine, if she hadn't been she wouldn't have wanted to "swim more."

We did feel safe while we were swimming. The lifeguards were very well trained and patrolled the perimeter of the pool continuously.

The last time we took her swimming was on our last day at Disney World. We had finished at the parks. Kimmie was so tired by then that she just wrapped her arms and legs around me and hung on like a monkey. I told her she was a monkey, but she said, "No." I walked and bounced around in the water with her wrapped around my neck. After a while her eyes were glassy and I thought she was almost asleep. I told her she was a hippopotamus sleeping in the water. She said, "No."

Swimming was a nice break from the heat, but we could have done without the excitement of an almost EMS call.

--Mom

Disney World - Soarin'

We were very careful about the rides that we took Kimmie on. We did not want to take her on anything that might be too jarring for her back. In other words, no roller coasters or simulator rides that jerked around. I read up on every ride before we went to make sure.

Soarin' is a simulator ride at EPCOT. We all read about it and decided that it would be ok for Kimmie. It was described as a perfectly smooth ride. What we didn't take into consideration is that she would absolutely hate it!

She screamed through the entire ride. No amount of hugging and comforting did any good.

The images projected on the screen to give us the feeling of hang-gliding over mountains and oceans were obviously videos, but that coupled with the seats being lifted up so that we were dangling and swaying, and the wind in our faces gave a very real sensation of hang-gliding. And it totally freaked out Kimmie.

The rest of us thought it was a really cool ride, but a painful experience with Kimmie shrieking.

It was a very popular ride with frequent wait times of over 100 minutes. Of course we had Kimmie with us. We didn't have to wait that long, but it was probably the longest wait that we experienced, maybe 20 minutes.

--Mom

Disney World - Favorites

At the end of our trip to Disney World, we asked Kimmie what her favorite part of the trip was. She immediately said, "Hug Aladdin." Well, we have to agree, that was our favorite part, too. Seeing Kimmie's dream come true was very special.

We asked Kimmie what her favorite ride was. She responded with, "Blue carpet." (The Magic Carpets of Aladdin.) Kimmie and I rode it 4 times. The first day we were at Magic Kingdom, we all rode it once. When we went back at the end of the week, Kimmie kept saying that's what she wanted to ride. When the park opened, Dad and Bethany went to ride Big Thunder Mountain while Kimmie and I went straight to The Magic Carpets of Aladdin. There were not enough people in line to fill the ride, so Kimmie and I rode it three times straight without getting off.

We asked Kimmie what her favorite show was. She responded with, "Magic mouse." (Mickey's PhilharMagic.) We saw it three times. It's a 3D show. We went to it twice the first day we were at Magic Kingdom, but Kimmie wouldn't wear the glasses. Later in the week, when we were at Hollywood Studios, Kimmie started wearing the 3D glasses on the Toy Story Mania ride and then at the Muppet Vision 3D show. So, when we went back to Magic Kingdom on the last day, we went back to Mickey's PhilharMagic and she wore the glasses. But she may have liked it best because Aladdin is in it.

Magic Kingdom was definitely Kimmie's favorite park. We went there the first day after arriving and checking into our hotel. The rest of the week, as we went to the other parks, she would sign "Magic Kingdom." We didn't get to everything the first day, so we went back at the end of the week.

Bethany said that her favorite parks were EPCOT and Animal Kingdom. I asked her why, and she said that Animal Kingdom and EPCOT had more stuff she was interested in, like nature, cultures, and science. She said that she wasn't as interested in the movie stuff that's at Hollywood Studios, and Magic Kingdom was more for little kids. I thought it was a pretty good assessment of the parks.

--Mom

Disney World

We took our trip to Disney World a few weeks ago. I've been planning to write some stories about our adventures there, but it's taken me a little while to get at it. Here is the first, an overview.

Everything I read about Disney World said that it is very accommodating to individuals with disabilities. I was hopeful that would be the case, so we could have an enjoyable trip, but I was also skeptical. When I called Disney World to get more information about traveling there with Kimmie, they seemed hesitant to give me any information. In one book I had read that we should go to guest services upon entering the park and request a "Guest Assistance Card" based on Kimmie's disabilities. We decided we would try that and see what happened.

Wow! We were amazed at how well we were treated. Between the wheelchair and the Guest Assistance Card, we were immediately directed to an alternate entrance at each ride/attraction, either the fastpass line or a wheelchair line. We usually had to wait a few minutes for them to work us into the queue or for the few people who might be in line ahead of us, but the wait was minimal and almost always out of the sun.

Occasionally, as Kimmie tired, she would get impatient if she couldn't get immediately on the ride, but usually she was ok or we were able to keep her distracted. She would not have been able to tolerate the regular lines, and it would have been very difficult had this not worked out. We were very grateful, felt a little guilty, but were very appreciative.

Bethany put it this way: We are not taking advantage of Kimmie, because we would not have chosen to come to Disney World. The only reason we're here is because Kimmie wanted to come.

Which is true. We were there because of Kimmie. And the rides that she could not ride, we had to wait in the regular line or get a fastpass and go back.

The Disney staff ("cast members") were very nice to Kimmie, especially the older ones. And especially Aladdin. He was very sweet with Kimmie. I'll write about that later and include pictures!

--Mom

Dresses and Tags

We took Kimmie shopping for new dresses a couple days ago.

Always a fun experience. You see Kimmie cannot stand to try on clothes that still have the tags hanging from the little plastic cord.

I think we tried about 8 dresses on her. It was loads of fun. Every dress had lots of little fabric buttons up the back, all buttoned on the hanger. Since the buttons are fabric they don't slide easily through the button holes. Before I can put the dress on her I have to unbutton all these buttons. Then pop the dress over her head. As soon as it hits her shoulders, she is trying to yank it off, while I am trying to button all these little buttons. Like I said, it was loads of fun.

Then to unbutton the buttons . . . off with the dress . . . toss it and a hanger over the door at Dad . . . then to unbutton a bunch more buttons on the next dress. While I'm doing that, Kimmie is putting her play clothes back on. Once I get the buttons undone, I have to take her play clothes off to put the next dress on . . . and it all starts over again . . . the dress hits her shoulders . . . she's trying to get it off . . . I'm trying to button the buttons . . . . .

Oh, and during all this there is the screaming. Wonder how far and wide her screams could be heard? Wonder what that store clerk thought!

(Dad read this and said the screaming didn't sound that bad outside the dressing area. I guess it sounded bad to me since it was pretty much in my ear and inside a small area.)

Once the tags are off, she wears the dresses fine.

--Mom

Bethany Where?

Kimmie: "Bethany where?"

Us: "Where is Bethany?"

Kimmie: "Church."

Us: "She's not at church. She's with some people from church. They're in Arizona. She got on an airplane and flew for 3 1/2 hours."

Kimmie: "Aaaahhh." Slaps hand or stomps foot. "Mad."

We've had this conversation with Kimmie 5 times today. She misses her sister and is really mad that Bethany's gone.

I think she's going to be looking for Bethany at church in the morning, and then she's going to be really mad that she can't find her. I bet it's going to be a really "fun" morning at church.

--Mom

Stinker

Yes, you all got it right. Kimmie was a little stinker her first week (3 days) at the new adult day program.

Let's see, in three days she threw her lunch, threw her snack, threw her glasses, threw her shoes, and threw a VHS movie--breaking it.

However, there was a lot going on that first week. One, new place, new people. Two, the worker who knows sign language was on vacation. And, three, they were boxing up all the movies, books, games, puzzles and activities to move the group to a larger location in another building. I think that was pretty disturbing to Kimmie the first day, seeing everything she wanted to play with disappearing.

Of course, Kimmie's always a little bit of a stinker. That's just Kimmie. I've been trying to drop little comments like, "Kimmie has to have at least one outburst a day," to help them understand that this is Kimmie and what a day with her includes.

This week the workers have been perkier when talking to me. I think they are getting used to her and figuring out ways of doing things that will minimize Kimmie's frustration. She does like to have everything done HER WAY.

So maybe Mom can start relaxing and heave a sign of relief. I think they're going to keep her.

--Mom

School's Out . . .

Ever since I went back to work in 2000, school being out has been problematic. Who will look after Kimmie?

Leaving her with strangers, wondering if they will take her to the restroom, if they will make sure she eats, if they will keep her safe, if they will be nice to her, is extremely difficult. And on the other side is the concern about Kimmie. Will she be good, will she cooperate, or will she cause problems. I don't want her to make life difficult for the people around her.

We were able to keep her in school age (elementary age) programs until she was about 16, at which time she was "kicked out" for being too old. We have been fortunate to have Kimmie's brother, sister and grandparents to help out when we cannot find other care options, but they won't always be there to fall back on.

So, right now we are trying our second adult day program. (The first one we tried two summers ago. After 3 days they told us not to bring her back. They didn't have enough staff to adequately take care of her.) The verdict is still out on whether this second place will be a good spot for Kimmie. And, unfortunately, Kimmie is the one causing the problems.

--Mom

Carrot Cake

At school each week Kimmie goes shopping with one of her teachers. They take her to the grocery store where Kimmie practices finding the items in the store and purchasing them through the self-scan or a regular check out lane.

Each week I send in a list of three or four items for Kimmie to shop for that week, along with money to make the purchase. Of course the list has to be non-perishable items that Kimmie can bring home on the bus, but I try to mix it up with a variety of stuff . . . canned goods, cookies, crackers, pretzels, pudding, paper towels, toothpaste, pasta, ketchup, soap, chapstick, cake mixes, brownie mixes . . . you get the idea. I try to keep them moving around the store.

A few weeks ago I put on the list a cake mix, whatever flavor Kimmie chose. We all expected her to come home with a chocolate cake since that tends to be her favorite. Much to our surprise she came home with a carrot cake mix.

A couple weeks later I baked the cake. We asked Kimmie if she wanted some carrot cake. She looked at me kinda weird and shook her head yes, but when I set it down in front of her she pushed it away and signed, "no, no." I guess it didn't look quite like what she expected. I let it go that night even though I was sure she'd like it if she tried it.

The next evening when we were eating more cake, we asked her again if she wanted some. She again said yes, until she saw it. BUT, we didn't let her off the hook.

Instead we kinda ganged up on her. Her Dad, her sister and I all started singing the "magic eating song." (See previous post.) Kimmie tried to resist, signing no and turning her head away, but by the second verse she couldn't resist any longer. She started signing the song with us, and then her mouth popped open. In went the carrot cake, and we all stopped singing to watch her reaction. As soon as the cake hit her tongue, her eyes lit up. We knew she'd like it once she tried it.

We didn't have to sing any more, and her piece of cake disappeared quickly.

She's so funny!

--Mom

The Magic Eating Song

When Kimmie was little we had a lot of trouble getting her to eat. She might eat a few bites to satisfy her hunger, but then she would lose interest. To get Kimmie to eat we would sing to her. We had a long list of preschool songs that we would sing. She would focus on the songs while we spooned food into her mouth.

We would sing The Wheels on the Bus, The Itsy Bitsy Spider, Mary Had a Little Lamb, Twinkle Twinkle Little Star, Row Row Row Your Boat, Over In The Meadow, The Ants Go Marching One by One . . . Some of these songs we had books for, with lots of extra verses that we learned. There were Sesame Street Songs, Disney Songs, movie soundtrack songs . . .

Over the years Kimmie became conditioned to open her mouth when we sang to her.

As Kimmie moved into adolescence and one of her medicines was changed, her appetite improved and we no longer had to sing to keep her eating. Since we no longer needed to sing on a regular basis, her "eating" songs dwindled to one favorite that Dad has dubbed, "the magic eating song." The magic eating song is Over in the Meadow:

Over in the meadow in the sand in the sun
Lived an old mother turtle and her little turtle one.
"Dig," said the mother.
"We dig," said the one.
So they dug all day in the sand in the sun.

It has ten verses, one turtle, two fish, three owls . . .

This song still comes in handy when we need Kimmie to take medicine or try a new food. We sing and she cannot resist. Her mouth just pops open! Sometimes she tries hard to resist and keep her mouth closed, but the longer we sing the more she gets into the song and forgets to resist.

--Mom

(This is a lead in to the next blog entry, stay tuned . . .)

Reality vs The Idea

All year long Kimmie will talk about Halloween. She will talk about what costume she wants to wear in great detail. She will talk about carrying her purple pumpkin basket, knocking on doors and signing trick-or-treat. Sometimes she is going to be a butterfly. Sometimes the Blue Genie. Sometimes Aladdin. But when Halloween arrives, Kimmie runs to the family room in the back of the house and won't go near the door, won't have anything to do with a costume, and signs "no" to everything.

We say that she likes the idea of Halloween, but not the reality of it.

She did go out trick-or-treating when she was younger, but it was always a bit difficult for her. One, she was scared of the other kids in costumes. Two, it was hard for her to see where to walk and whether the surface was even or uneven or steps. Three, the decorations scared her. Four, she was very slow getting around and would almost get trampled by kids who were running.

There are other examples of Kimmie liking the idea of something, but not the reality. Take peanut butter and jelly sandwiches . . . Kimmie talks about them all the time at school, but in reality, she does not like the texture of bread, nor does she like the texture of peanut butter.

She's an interesting girl.

--Mom

Sweet, S-W-E-E-T

Kimmie's favorite word right now is "sweet". She will sign "sweet" and then fingerspell it. She never signs just the word. She has a few words like this that she always has to fingerspell after signing the word. "Free" is one, "Free, F-R-E-E." Usually used in the context of "rub the gold lamp, free F-R-E-E the Blue Genie."

Right now Kimmie is big on Gwen, a character from the Ben10 cartoon. "Sweet S-W-E-E-T girl G-W-E-N." Before Gwen it was the girl characters on Teen Titans. "Sweet S-W-E-E-T girl Starfire." "Sweet S-W-E-E-T girl R-A-V-E-N." Daddy took exception with Raven being a sweet girl. He says she has anger management issues, but Kimmie thinks she's sweet.

We are always telling Kimmie that she is sweet, but she just shakes her head no.

--Mom

How to Get the Best Hugs

Kimmie has quite the imagination. Every morning she tells me who she is pretending to be and then I ask, "Who am I?" Most mornings she is Aladdin, and I am the Blue Genie. The Blue Genie and Aladdin always have to hug, and they are the best hugs. If you want a good hug, tell Kimmie you are pretending to be the Blue Genie.

Sometimes I'm Shaggy or she's Shaggy. That usually results in a pretty good hug.

Sometimes she's Gwen (from Ben10), and I'm Ben10. Again, they have to hug.

But the best hugs are Blue Genie hugs.

Helping Kimmie with her breakfast is rough . . . all that hugging! It's a great way to start the day!

--Mom

Eating Machine

Kimmie has turned into quite a little eating machine. She has gained back all the weight she lost during her surgeries plus a couple pounds more.

I counted up and on Sunday she had meals or snacks eight times! Breakfast, a snack during Sunday School, lunch, a hotdog at the zoo, a snack when we arrived home from the zoo, supper, a snack with her medicine, and then popcorn before she went to sleep.

--Mom

Invisibility cloak

Kimmie has been doing a little routine at bath time. She is never eager to leave her toys for a bath, and had usually fussed at us for interrupting.

One evening she was a bit happier than usual, and she started giggling as we went upstairs. She sat down, still giggling, while I went into her room to get fresh pajamas. She giggled even harder while I was gone, so I knew she was up to something.

When I walked back in the bathroom, she had gotten a washcloth from a drawer and spread it over her head. She laughed out loud, and ducked her head in that way that always means "you can't see me".

She did this more often, now it is almost every bath time. And she usually picks a blue or aqua washcloth.

We asked her tonight if she is invisible when she has the washcloth over her head. She looked a little confused, and then signed"yes". But her giggle will always give her away.

Dad

Brown Bear's Adventure

Brown Bear, for those who don't know, is Kimmie's teddy bear. Brown Bear was big brother's teddy bear first. Kimmie loved Brown Bear so much that big brother let her have him many, many years ago. Kimmie named him Brown Bear after her favorite book when she was little, "Brown Bear, Brown Bear what do you see?" (Eric Carle)

Brown Bear is well loved. You can tell by the bald spots. He goes most places with Kimmie. He's even been through surgery with her, more than once. We always make sure we have him when going to a doctor.

Yesterday when we went to the doctor with Kimmie, we parked in the parking garage, rode the elevator to Level 3 so we could walk across the pedway to the office building. Once we arrived in the office building we took another elevator to the floor we needed.

When we were leaving the doctor's office we rode the elevator back to the third floor so we could walk across the pedway again, back to the parking garage. A woman on the elevator was talking to us and exited on the third floor with us. As I was talking to he, Kimmie walked over to the balcony overlooking the lobby and looked down at the fountain. As I continued talking with the woman, it crossed my mind that Kimmie might drop Brown Bear over the rail.

I glanced at Kimmie standing by the rail, she was fine, and then I turned back to the woman as we chatted. When I glanced back at Kimmie she was walking towards me with empty hands. Sure enough, she had dropped Brown Bear.

The woman and I rushed over to the rail and looked down. There lay Brown Bear. Fortunately she had dropped him rather than tossed him, or he might have ended up in the fountain.

BUT, as we looked down at Brown Bear, a lady picked him up and was walking off with him. As this lady was walking off with Brown Bear I started calling down to her, "Lady with the bear, wait, come back, lady with the bear . . . ". The woman I had been talking to started calling down to her as well, "Look up. Look up." I had no idea where the lady was going with Brown Bear.

She did stop and look up. (Whew!) I asked her to put him back and we'd come get him. She asked what floor we were on, said she was coming up and would bring him to us. A minute later the elevator doors opened, she stepped off, handed me Brown Bear and stepped back on the elevator. It happened so fast I hope I said "thank you," I think I did.

And Brown Bear returned to Kimmie's loving arms.

We have so much fun (well, that might be an overstatement) and so many adventures going to the doctors. We never know what might happen, who we will meet, who Kimmie will decide to hug, how people will respond to her . . .

--Mom

New Doctor

In January we took Kimmie to a new doctor. Well, technically she's not a new doctor since we did see her once before, about 4 or 5 years ago.

As usual Kimmie was quite stressed about a doctor appointment, especially since she couldn't remember and didn't know what to expect. We were taken into the doctor's office, rather than an exam room, which calmed Kimmie down.

We were chatting with the doctor when suddenly she interrupted herself to say, "She's signing!"

We responded that, yes, Kimmie signs, that's her means of communication.

She wanted to know if Kimmie was trying to tell us something. I turned and watched Kimmie for a minute and responded, "No, she's just talking to herself." (Kimmie does that a lot. She retreats into her own world and signs about it. Sometimes it's about Aladdin. Sometimes Eeyore. Sometimes she's a butterfly flying through the sky. . . .)

We went on with our discussion. A little while later she interrupted herself again and said, "She is just adorable!"

Today we went back to this doctor for a follow-up. She had a "student doctor" with her and twice she turned to the student doctor and said, "Isn't she adorable?"

I think this doctor is a keeper.

--Mom

Green Star Wars Sword!

OH, NO! Evidently there is a GREEN Star Wars light saber sword.

At least there is a commercial with a green one in it. I saw it the other day while sitting next to Kimmie. I gasped. She poked me and signed "green". Her sister laughed.

Maybe we won't be able to find a green one at our stores? Maybe I can keep her out of the toy section?

Oh, well. She does play with them.

My little collector.

If you have no idea what I'm talking about, see the February 16, 2010 post titled "Kimmie's New Collection."

--Mom