Kimmie's Back

Kimmie's back is a difficult thing to figure out.

There is the scoliosis, the tethered spinal cord and the mass of tissue at the base of her spine where it didn't finish forming.

Did the tethered spinal cord cause the scoliosis? If the scoliosis is fixed, will too much tension be put on the spinal cord. How are the tethering and the mass related.

It has become more of a dilemma now that the spine doctor has said the scoliosis needs to be fixed. Even the pediatrician says we are between a rock and a hard place. We'll soon be having more tests and additional appointments with the neurosurgeon and spine doctor to try to figure it all out.

Right now it seems like there is no good solution. Whatever course of action we take appears to have complications.

No wonder she always wants her back rubbed.

Pray for little Kimmie, her back, and the doctors.

--Mom

The Hearing

We had the hearing to establish guardianship for Kimmie as she turns 18. The hearing was Wednesday, May 20. It was interesting. Seemed like a whole lot of trouble for something as simple as our circumstances.

Kimmie was cute, cute, in a new blue dress and little white shoes. She understood enough to know it was all about her. She was excited about getting dressed up.

The judge was very nice. She smiled at us a lot.

I think it was the attorney for the state who first referred to us as "her loving family" and that seemed to be a theme that was repeated through the proceedings.

The jury was kinda funny. Six white women who all appeared to be retired and mostly in their 60s. Very grandmotherly looking group. I didn't expect any problems from them. I figured they would look at Kimmie and want to make sure she was taken care of. I thought they looked like a Sunday School class or quilting group on a day outing. They were all dressed casually and had lunch bags or an extra bag with stuff to do while they waited.

Kimmie sat next to her court appointed attorney. Nice enough man, just a bit arrogant. Kimmie thought he looked like the Blue Genie (Aladdin's Blue Genie). She hugged him when he came to our house. She hugged him in the hallway outside the courtroom. And she hugged him in the middle of the proceeding. That was the funniest. He looked a little embarrassed and didn't know quite what to do with her. And she hugged him when it was all over. I think the judge got a kick out of it. (This sweet little girl getting the best of this big arrogant man.)

It didn't take long. Like I said at the beginning, a lot of trouble for something that was basically very simple.

And yes, Brown Bear was there, her faithful friend who goes to all the important events with her.

--Mom

The Jar

Kimmie has a new toy, a small plastic jar.

Dad washed the jar and placed it on the kitchen island. He had plans to use it for something, but Kimmie found it and claimed it instead.

She picked it up, took the lid off, examined it, put the lid back on and placed it back on the counter. But a few minutes later she went back, picked it up and carried it to the table where she sat down, took the lid off and started carefully stuffing her shoe strings into the jar. After the strings are all inside she puts the lid back on and looks at all the pretty colors inside the jar. After a while she takes the lid off and shakes out the shoe strings.

When we go out, she used to wad up all the shoe strings and carry them in her little fist. Now she carries the shoe strings in her little jar.

Sometimes she gets frustrated when the shoe strings pop out and won't stay in as she is filling it, but for the most part it is a new entertainment for her, carefully, inch by inch, pushing the shoe string in the jar.

--Mom

Pockets

Kimmie has recently discovered pockets. Once a week at school she is taken shopping at Kroger. I send money and a list of 3 or 4 items for her to buy that week. They teach the kids "next dollar" strategy where everything is rounded to the next dollar, so I send bills that she can count out when paying. She always gets change back. One week the note in her agenda said that she insisted on putting the change in her pocket. Sure enough, that's where I found it.

A couple weeks later . . . I had taken the change out of her money pouch to put in a new list and the dollar bills for her to use that week. I left the change on the kitchen counter. That evening as I was taking her to the restroom I discovered she had a whole pocket full of change. Her sister told me that Kimmie found the coins on the counter and carefully picked them up one by one and jammed them in her pocket.

While we ate supper that evening she carefully pulled the coins from her pocket and sorted them. Quarters in one pile, dimes in another, nickels and pennies. There were more nickels than the others, so she picked up the nickels and put them back in her pocket. It was a Wednesday and we went on to church after eating. At church Kimmie carefully pulled out her four nickels to show Grandpa. You could tell that she was very proud of her pocket full of nickels.

Yesterday she stuffed her four beloved shoe strings in her pocket. It was a very full pocket. It made quite a wad.

--Mom

"Radio"

A few years ago a movie came out entitled Radio. At the time I heard a brief review of it and thought I'd like to see it. After it came out on DVD, I picked up a copy for our family.

You may have seen the movie, but if not, it is about a developmentally disabled, young black man who lives in a small southern town. His nickname is "Radio" because he always carries an old radio with him as he walks around town.

The high school football coach befriends this young man. Their relationship and how it changes them is what the movie is about. The impact this friendship has on the young man's life is powerful.

The heartbreaking part is when the young man's mother dies suddenly of a heart attack. She had told him that she would always be there for him, and then she was gone. . . .

I don't know how Kimmie will ever adjust to my being gone. She's very attached and I'm afraid she might walk around signing "where's Mommy, where's Mommy, where's Mommy" while screaming and crying. How to prepare her for the day when that might happen is another mystery. It's a concept I don't think she can truely grasp.

--Mom

Where's Sister

Kimmie has this thing about wanting our family to all be together. When we go to church, she wants our family to all sit together. If her sister sits with her friends in the youth group, then Kimmie gets worked up and will fuss and sign "Where's Sister."

Kimmie has gotten used to her Dad being somewhere else during the service and her brother going to a completely different church, but she is very attached to her sister and always wants her with us.

We have the same routine every week. We go to early church, then we go to Bible Study. In early church Kimmie, her sister and I always sit together. Sometimes Dad is there and sometimes he is somewhere else in the building. After early church, Kimmie and I head upstairs to our classes while her sister goes to the youth wing for her class. Out of the blue a few weeks ago, Kimmie started getting upset because her sister left us to go to her class. Kimmie proceeded to sign "Where's sister" and fuss all the way to her class.

Kimmie has been fussing about "where's sister" ever since. Kimmie has become very attached to her sister since her sister babysits her every afternoon.

--Mom

Court Appointed Visitors

As we prepare for the guardianship court hearing, we have a list of people who are to visit with us to assess the situation and get an idea of Kimmie's abilities.

So far the physician and the psychologist have been here. Kimmie has done quite well. She has giggled and smiled at both of them. They both asked her who the president is, and she told them both "Kimmie." She even held her guitar and did a little dance for the psychologist. He did an assessment with some pictures, and she cooperated well.

We will be glad when it is all over, but so far it hasn't been too bad.

--Mom

The Triple Hug

Before Kimmie began with the "Double Hug" she was doing the "Triple Hug."

With the Triple Hug, Kimmie gives a big squeeze, releases and then starts to back away. About the time the person thinks it's over, Kimmie decides she needs to hug them again and grabs them and squeezes again. Once she's done this, we know there is going to be another hug, because she always has to get three squeezes in.

--Mom

Update from Dad: Sometimes she has a triple-double. The night before last she was excited to finish supper and get back to her movie. I got a triple-double from that, three squeezes each around my chest and my neck.

Dad

Double Hug

Kimmie has had lots of different "hugs" over the years. Right now she has a hug I call the "Double Hug". When she decides she is going to hug someone, first she hugs them around the chest, then she has to hug them around the neck. Thus, the "Double Hug".

When you receive a "Double Hug" you really feel loved and special. The hug around the neck is usually the topping on the cake. Mmmm, mmmm, it's a really good hug.

--Mom

Tug-o-War

This is a follow-up to the earlier post about Kimmie and her socks, especially the turquoise socks that she loves so much.

The turquoise socks never seem to make it back into Kimmie's sock drawer. Every time they are washed, she spots them during the folding. She snatches them up and immediately puts them on.

This last time, her sister was folding the laundry and saw Kimmie reaching for the socks. Kimmie and her sister both grabbed the socks at the same time and a tug-o-war began. Kimmie is so strong that she was able to hold her own. (She may be small, but she knows how to use every ounce of her weight to her advantage--you should see how many people it takes to hold her down at the dentist's office.) Her sister could not easily get the socks away from her. Eventually Kimmie won (or, rather, her sister let her have them), and she promptly put on the socks.

I suppose I should buy her some more turquoise socks. However, knowing Kimberly the new socks wouldn't feel exactly the same as the old ones, so she probably wouldn't have anything to do with them. At least that's the way it is with the shoe strings. She chooses one string from the pack and the other one is discarded. She can always tell the difference between the two strings and will never play with the discarded one, at least not until the favored one is lost or frayed.

Funny little girl.

--Mom

May 20, 2009

May 20, 2009, is an important date on our calendar. We are scheduled in disability court that day for Kimmie's guardianship hearing. Between now and then we have to meet with a court appointed physician, social worker, psychologist, and attorney who will represent Kimmie.

We are not expecting any problems, but the whole thing is a little disconcerting.

We've been Mom and Dad for 18 years, feeding, dressing, bathing, teaching and loving Kimmie. Now all these strangers will make important assessments and decisions about our little Kimmie. They will spend just a few minutes with Kimmie, prepare their reports and submit them to the court. Then we will appear before the judge and jury who have never laid eyes on Kimmie, for their review and decision.

It's a little disturbing.

--Mom

Aladdin

Disney's Aladdin is by and far Kimmie's favorite movie and favorite cartoon character. She has gone through many Aladdin books. We have had to replace them because some of the pages became shredded and some of the faces were rubbed off from her pointing at them.

She loves the movie and has watched it over and over and over again. We had to buy a second copy because she wore the first one out. The rest of the family became tired of the movie and started hiding it so we wouldn't have to watch it.

Kimberly has watched it so many times that she is actually rather bored by it. She continues to ask to watch it, but, when allowed to, she ends up crying and screaming and sometimes takes the disk out and throws it. Because of this, we don't allow her to watch the movie any more. She has her books and her stuffed Aladdin toys, so she can pretend and act out the parts she likes.

Grandma's house used to be her Aladdin haven. She knew that they would let her watch it all day long, over and over again. But once the tantrums started happening during the movie, they hid their copy, too.

Now Kimmie goes over there and looks for the Aladdin movie. She studies and studies their movie cupboard hoping to find it. Every room she goes in she stands and looks and looks for her movie. Is it on top of the refridgerator? the microwave? Is it on the organ? in the bookcase?

Poor little Kimmie. Actually, we sometimes let her hold the movie box and that often makes her happy, just holding it and knowing where it's at, even though we won't let her watch it.

--Mom

Family Picture

I was looking at the newspaper a few days ago and noticed a small article about a family that had children the same age as our two older children. These children went to the same elementary school as our children. I read the article and looked at the family picture.

As I looked at the picture and read the part about the 17-year-old daughter, who will be graduating this year and going off to college in the fall, I thought about our 17-year-old daughter. I tried to envision what our family picture would look like with a "normal" Kimmie, a Kimmie who would be preparing to graduate from high school and enter college.

This didn't last long. The "normal" Kimmie felt like a stranger in our family and the sense that someone was missing was overwhelming.

Not only did this substitution change the outward appearance of our family, but it changed each member of our family. It felt like we were all different people without our Kimmie.

We'll keep our little Kimmie, just the way she is. She has helped shape each of us into who we are and we wouldn't be the same without her.

--Mom

P.S. We don't actually have too many family pictures. They all come out a little funny looking. Either Kimmie is making faces or some or all of us are looking at Kimmie to see if she is smiling and looking at the camera, which, of course, means we are not looking at the camera.

--Mom

Hmmmmm

Kimmie has always been our quiet child. Being non-verbal, she has not typically made much noise.

Lately, however, she has had her "hmmmmmmmm" going. We sometimes say she has her "motor" running. It is a noise she makes in her throat. Sometimes she can get quite loud.

She can be watching a movie and start "hmmmmmmm"ing. She will get louder and louder as she gets excited about the movie. The competing noise from the movie and the noise of her "hmmmm"ing can become overwhelming.

We often ask her to be quiet and she will shake her head "yes." But when she goes back to what she was doing the "hmmmmm"ing starts up again. It's like she doesn't know what makes it or how to turn it off.

One of the places where she will make this noise is church. No matter how many times I ask her to be quiet, and she agrees, she just can't seem to stop.

She sounds happy when she makes this noise.

What to do, what to do, hmmmm.

--Mom

Tantrums and Sweet Moments

Kimmie's teacher is currently on maternity leave, so Kimmie has a new, long-term substitute teacher. Amazingly enough, the first couple of weeks Kimmie was really good. She came home almost every day with a note that said "Great day." We were like, "WOW!"

It didn't last, though. By the third week the tantrums and grumpies had set in. I offered suggestions to the new teacher and apologized for Kimmie being so much trouble. Her new teacher responded with this comment:

". . . She is a very sweet girl and for every tantrum she throws she has just as many sweet moments. She does a good job balancing them out."

I love the way she describes Kimmie. We always think of Kimmie as being sweet, but sometimes I wonder why when she can be so grumpy and throw hugh tantrums. This new teacher described Kimmie perfectly. It's the sweet moments that we remember.

She's our sweet little Kimmie girl.

--Mom

Soap Dispenser

Our church has recently renovated most of the restrooms in the building. Lots of automation was included in the renovations. All the "hands-free", "no-need-to-touch" stuff including automatic water sensors, automatic soap dispensers and automatic paper towel dispensers.

Taking Kimmie to the restroom has become an adventure! This past Sunday we had extra events going on at church and we made three adventurous trips to the restroom.

Kimmie's favorite accessory is the soap dispenser. She loves to stick her hand under it and be rewarded with a dallop of soapy foam. The sinks are very close to the soap dispensers and it is difficult to move her to the paper towel dispenser without her sticking her hand back under the soap dispenser. So we usually end up washing our hands at least twice before I'm able to maneuver her past the soap to the paper towels and then out the door.

Sometimes I'm able to move her away from the sink quick enough that she doesn't end up with more soap on her hands, but she is usually fast enough to trigger the dispenser. The soap lands on the counter and then I end up trying to clean the counter while keeping Kimmie far enough away that she cannot trigger the soap dispenser again and have us starting this whole process over again.

We have so much fun!

--Mom

Beloved Brown Bear

I think I've written about Brown Bear before. He is a part of our family, usually attached to Kimmie's right arm. He is a worn and balding teddy bear. He is well loved. He sleeps with Kimmie every night. He goes to the doctor and to the hospital with Kimmie. He has been through surgery with her. She carries him to church, to the store, anyplace we will let her take him. We draw the line at school, too much risk of losing him.

I took him to work with me not long ago. I was going to be picking Kimmie up at school and taking her to the dentist. I knew she would want him at the dentist. I felt guilty leaving him in the car in the cold. He looked rather forlorn laying in the back seat all alone.

We often worry about what happens when Brown Bear falls apart. How will Kimmie deal with it.

Last week we were hopeful that she would attach herself to a new bear. She had snatched a brown bear from her sister's room and played with it the rest of the evening. We were hopeful she would take to this new bear, but we were skeptical.

For some bizarre reason Dad got the notion last week that if Brown Bear disappeared for a while, Kimmie would forget about him. Now Kimmie's sister and I looked at Dad like he had grown an extra head, but he persisted.

After Kimmie went to sleep on the couch that night, Dad carried her up to bed and intentionally left Brown Bear in the family room, taking her sister's bear up to bed with Kimmie instead.

A few hours later we were roused from sleep by Kimmie crying. She wanted Brown Bear, so Dad retrieved him from the family room. The next morning, he commented that she only lasted three hours without Brown Bear.

Since then he has made sure Brown Bear goes to bed with Kimmie.

--Mom

Socks

Kimmie has developed an obsession about socks.

Dad tends to always grab white socks at 5:45 am when we are getting Kimmie ready for her school bus, and white socks can get rather boring. Kimmie tends to pick colored socks, not necessarily the color that matches her clothes.

First she was stuck on the pastel blue socks. One weekend she wore these socks for 3 days. Fortunately her feet don't sweat and she didn't have her shoes on much of that time. We did put clean socks on her, but she would hunt for the blue socks and change from the clean socks to her favorite blue ones.

More recently she has found the bolder colors, hot pink, turquoise, black . . . One evening she picked out turquoise socks to wear with lime green pajamas. Her sister came home and told her that her socks didn't match her clothes. Kimmie didn't care.

She has started going to sleep with her socks on, but sometime in the night she usually takes them off. We find these little heaps of socks next to her bed. If we don't get them picked up and in the laundry right away, she grabs them and puts them back on. We have started picking them up while she is asleep and putting them in the laundry so she won't be able to put them back on.

This past Sunday, after we came home from church, she told me she was going upstairs to get some socks. I wondered if she would put the socks on over her tights or if she would take her tights off before putting the socks on. I went upstairs a few minutes later to see what she was doing. She had forgotten about the socks and was playing. When I came in her room she remembered the socks and started hunting for the ones she had worn to bed the night before, the ones we had already put in the laundry. She knew they should be in or around her bed, so she started taking her bedding apart looking for the socks. She was not happy when I told her that the turquoise socks were in the laundry. Eventually she chose to wear black socks, black socks with lavendar clothes.

She protests loudly whenever we take her socks off, you know, for her bath, or to put clean ones on, or to put on ones that match her clothes. . . . She's a mess!

--Mom

New Shoes

Kimmie has new shoes. They are really cute. Everyone agrees that they are cute. Everyone, but Kimmie. She is having more trouble adjusting to these than she usually has. We're not sure why. She says they hurt her feet but we can't feel anything that would hurt.

At first we did not send her to school in them. We had her wear them on a Saturday when we were doing some shopping, so she could get used to them and break them in a bit. We even went to the mall. She walked pretty far in the mall and then all the way back to the car. She rode in a cart at another store and left her shoes on. She walked around another store and didn't complain.

On Monday we decided the shoes were ready to be worn to school. Evidentally, NOT. They didn't say it was a big problem at school, just that she took her shoes off a lot. But on the bus, that was another story. They said she took her shoes off and threw them at others on the bus.

Hummm. We decided she would wear them at home until she was doing better with them and sent her to school on Tuesday in her old shoes. The bus driver and aide looked her over when she got on the bus and said they were really glad she was not wearing the new shoes.

Wednesday evening we were going to church, so I put the new shoes on her. She walked around the house fine, getting together the things she wanted to take with her. She went out to the car and off we went to church. A short time later she had her shoes off and proceeded to scream at them and us . . . all the way to church. Her sister took the shoes away from Kimmie and we told her she didn't have to wear them until we arrived at church. This didn't help. She continued to scream. She wasn't happy with the shoes on and she wasn't happy with them off.

When we arrived at church, she put the shoes on and walked into the church and was fine. When we sat down for the Bible study, she took her shoes off. I immediately moved them out of the way and told her she could go without them while we were there. Fortunately she was quiet until after the study ended. Once it was over, she wanted her shoes and sat there and screamed at them.

She always fusses when she gets new shoes, but usually after one wearing, she is fine with the shoes. I'm not sure if this pair will ever get back on her feet. Right now they are sitting along the wall in the family room where we can admire how cute they are, even though she won't wear them.

--Mom

Shoe Shopping

Shoe shopping is one of those experiences that ranks right up there with doctor and dentist appointments. Kimmie's phobia of new shoes is almost as bad as her phobia of bandaids. She fights both with all her might. It makes shoe shopping lots of fun!

It all started years ago when Kimmie was just a baby. At 9-months, she wasn't rolling or sitting or crawling. At the doctor's recommendation we took her for physical therapy. As the physical therapist worked with her through rolling and creeping and crawling and pulling up, it became apparent that Kimmie's feet rolled in. The physical therapist recommended an orthopedic doctor, and he ordered plastic inserts to be made to keep her feet from rolling in.

The ordeal of having these plastic inserts made was the beginning of Kimmie's phobia. Fortunately, once the plastic inserts were in her shoes, where she couldn't see them she didn't think about it much, but if we had to take the inserts out for any reason . . . HYSTERIA! When we went shoe shopping we would have to take the inserts out to see if they fit in the new shoes and then try the new shoes on Kimmie. Trying to hold her leg still enough to get the shoe on was a challenge, and we are talking about a very tiny 2-year-old.

Kimmie has not worn the inserts since she was about 4 or 5, but shoe shopping has not gotten any easier. She fights putting any new shoe on. It continues to be a challenge to get a new shoe on her foot, and to keep her from instantly kicking it off.

--Mom