Sobbing for Sister

The other day Kimmie's sister had to go to the doctor. We had to take Kimmie with us. She was visibly anxious even though we kept telling her the doctor was not going to look at her.

We walked down what we call the "hallway of doom" looking at the door to the pediatrician's office at the end. Kimmie was clinging to my arm. Her sister commented that it is an eerie hallway with shadowy lighting.

Kimmie clung some more when it was time to go to a room. She refused to go any where near the examination table.

Kimmie's sister had to have her finger pricked for a blood test. Kimmie sobbed and sobbed for her sister, clutching me and hiding her face. Her sister just laughed because Kimmie was so pitiful.

When the doctor came in Kimmie sobbed some more, then hugged the doctor while she continued to cry.

Sometimes I don't know whether to laugh because she is so funny, or cry because she is so afraid.

--Mom

My Little Monkey

I came home from work the other day and Kimmie was sitting at the table in the kitchen. She looked up at me. She had black crumbs all around her mouth. I said to her, "Have you been eating Oreos?" She grinned and shook her head, "Yes."

She does love Oreos.

--Mom

My Little Collector

Kimmie never likes going to the dentist, although she does hug and hug and hug all over the dentist.

But the part she likes the most is the treasure box. For a while she was collecting plastic ducks for her bath, but now she has started collecting bouncy balls. And of course one is never enough, she has to have one for each hand. So when she went to the dentist this week she came home with two more bouncy balls.

Of course, after all the crying and the screaming and the hugging, everyone feels so sorry for her that they would just about give her the moon. Two bouncy balls, no problem.

--Mom

Trauma at the Dentist

Kimmie went to the dentist yesterday afternoon. Always a traumatic experience. She doesn't fight as hard as she used to, but she does cry and scream and wiggle a lot.

She looked like she had been in a fight the rest of the evening. Her lips and cheeks were puffy with red blotchy spots on them. She never eats well after the dentist, and yesterday was no exception. She ate maybe 4 or 5 bites of supper. We tried to get her to drink instant breakfast to give her some calories. But even drinking seemed to be a problem.

Poor little girl. It always seems like she has to endure so much more than her share of problems.

--Mom

Kimmie's Laughing

Kimmie's laughing. It's such a happy sound.

Last Saturday I was taking my other daughter someplace and we were driving a way we have not gone in a while. We approached a stop light on the green cycle at an intersection with a little hump in the middle. It's a fun intersection to go through a little fast on the green because the hump in the middle gives you that "whoosh" feeling.

Kimmie always loved going through that light on the green and feeling the "whoosh." She would laugh. I told her sister on Saturday when we were laughing that I could hear Kimmie laughing in my head even though she was not with us. And see her signing, "funny slide, funny slide."

We'll have to go that way soon so Kimmie can laugh as we bounce over the hump.

--Mom

School Dance

Kimmie has been having happy days at school. Yeah!

Yesterday at school she did a hula dance, her air guitar dance and she pretended to be a soldier (she likes to salute).

And she danced on the bus again.

What fun!

--Mom

School

School started this week.

Kimmie had a good first day. She even danced on the bus.

The second day she danced for them at school, but she threw her glasses on the bus. Little stinker.

Her sister's response to the first day of school, "School was awesome!"

--Mom

School Registration

I took Kimmie to school this week for registration. She received her schedule. We paid her class fees. Then she had her picture taken for her school ID.

It was a rather entertaining activity.

We had been telling her that we would be going, but she would repeatedly sign "No." I picked her up at home, loaded her in the car and off we went. When we arrived at school, she sat in the car signing "no, no, no" and refused to unfasten her seat belt or get out of the car. After I promised to take her back home afterwards, she calmed down and climbed out of the car.

When we entered the school she insisted on clutching my arm, hiding her face, and then she giggled. She wanted to go in the office, but when she looked in there, whoever she wanted to see wasn't there so she finally walked on with me to the cafeteria, clutching my arm and half hiding.

When we entered the cafeteria there were tables around in a semi-circle with different letters of the alphabet on them. Two people, mostly women, sat behind each table. There weren't too many in there registering, so the folks behind the tables were mostly sitting, looking around, waiting.

They were mostly sitting there with ho-hum kind of faces, until we came along. As we walked across the cafeteria and they spotted Kimmie, one by one their faces lit up with a smile. I guess that's the effect Kimmie has on people. She makes them smile.

We took care of the paperwork and then went across the hall for the picture. We had to wait behind a couple other students. Kimmie was pretty good. She decided to pretend she was playing baseball and she assumed her batting stance, complete with "digging your foot into the dirt" motion. One of the women from the office was helping with the ID cards. I knew she was one of Kimmie's buddies so I asked Kimmie if she wanted to say "Hi" to her. No, Kimmie was too busy "batting." As we moved up in the line and were closer to the woman from the office, Kimmie spotted her and over she ran with her arms out. This lady was pretty smart. She jumped up and went around the table so she could get a good Kimmie hug. And it was a good one, a double hug. One around the waist and one around the neck, with a really good squeeze.

Registration was actually kinda fun, watching everyone's reaction to Kimmie.

--Mom

Vacation and Another Friend

Last week we were on vacation. The first evening we stopped at a restaurant to eat. Kimmie was sitting at the end of the table where the waitress stood to take our order.

It wasn't long before Kimmie was hugging her. When Kimmie finally let go the waitress started telling us about her brother being autistic.

After she walked away, Daddy just looked at me and said, "That's another one, another life she touched."

I said, "Yes, Kimmie made another friend."

--Mom

Kimmie's Birthday Celebration

I'm very behind on my stories. It's already August and I haven't even written about Kimmie's birthday celebration.

Since Kimmie's sister was going to be gone to camp on Kimmie's birthday, we celebrated early. We told Kimmie when we were going to celebrate her birthday about a week before and boy was she ready.

Not normally a morning person, Kimmie was up at 6:20 am. We weren't celebrating until evening, so she had a long day of waiting. Fortunately she was pretty good about it. She signed repeatedly "Grandma Grandpa over." I reminded her that they weren't coming over until evening. She was amazingly patient.

It did start to get the best of her when she could see the presents, but she had to wait for us to all finish our cake and ice cream. We all knew that she'd been waiting a long time, so we gulped down the cake and ice cream to get to the important part -- presents.

She was very excited. One of her new loves, this summer, is Teen Titans. One present was Season One of Teen Titans. She has been carrying it around and sleeping with it ever since. (Well, when she can convince Daddy that she needs to take it to bed with her.) She doesn't ask to watch it very often, but she keeps the movie box close by. Sometimes she cries in the night and we have to find it for her.

She is enjoying her new books and toys.

It won't be long before she starts talking about Christmas.

--Mom

Shopping

Kimmie has a one track mind and lately it has been fixated on shopping. Unfortunately she is not happy to just go out and wander around looking. She thinks she needs to buy something every place she goes.

Usually she also has in her mind something that she wants to buy. Unfortunately it is often something that we cannot find in the stores.

As you might guess, shopping with Kimme usually involves a lot of screaming. Screaming because what she wants is not in the store. And screaming if we try to leave without her buying something.

It's a challenge.

--Mom

The Waiter

Tonight we went out to eat. Kimmie was determined to hug the young man who was our waiter. Every time he came to our table she would look up at him and hold her arms out. Dad would try to distract her and redirect her.

One time she was smiling at the waiter and I asked her if she was flirting. The waiter laughed and said, "that's ok" as he went about his work.

We managed to keep Kimmie off him until we were leaving. As we were leaving the waiter came past us to speak to us as we left. Kimmie's arms went up and he got his hug. Another waiter went past about that time and paused to say he must have done a good job. Our waiter laughed and commented that his customers love him. It was cute and sweet and funny.

Kimmie's sister was laughing as we finally made our way out of the restaurant. She observed that every time we go out to eat Kimmie hugs the waiter or waitress. I pointed out that most people who work as waiters and waitresses are outgoing, people persons, which is good because they are not too bothered by a little girl hugging on them.

Another life Kimmie touched.

--Mom

The Back Dilemma

Kimmie's back problems have become a bit of a dilemma. This week we went to the neurosurgeon so he could look at the MRI films and determine if her spinal cord and related problems would be ok through scoliosis surgery. He looked at the MRI but could not determine for sure whether her spinal cord had become reattached and tethered again. Since he could not determine this, he could not say it was ok to have the scoliosis surgery, nor could he say that she needed to have the tethered spinal cord release surgery again.

We continue to wait for the doctors to figure out what can be done about Kimmie's back. The neurosurgeon said he would get with the radiologist and spine/bone doctor to see if they could figure something out. Maybe the radiologist can see more than he can see? Maybe there is another test or a different angle that could be done to see the area more clearly?

The neurosurgeon's assistant is suppose to call us when they decide something.

Waiting is not my strength.

--Mom

New Friend

Kimmie made a new friend this week.

Kimmie was complaining about her mouth hurting. We couldn't exactly pinpoint a spot that looked like a problem, but Kimmie rarely admits to anything hurting. She's too afraid of going to the doctor or, worse yet, the dentist.

Her dentist is on vacation, so we were given the phone number of the on-call dentist. A new dentist, new staff . . . Dad decided he better meet us there to help hold her still. The dentist did real well with Kimberly. Dad held her arms out of the way while I kept her legs straight so she couldn't dig her feet in and leverage her whole body around. The assistant stood a couple feet away looking a little lost, not knowing what she should do.

When the dentist was finished looking, he received about eight hugs from Kimmie. The assistant received a really nice big hug, too.

When we were leaving, all the staff appeared to breath a sigh of relief, along with smiles and comments about how well it went. I couldn't help but think about how Kimmie had touched some new people that day. I think the dentist and the assistant will remember her and her hugs for a long time.

--Mom

July

July has arrived. An exciting month for Kimmie. Her birthday month.

Unfortunately it is also her siblings birthday month and Kimmie's birthday comes last. Celebrating her sister and brother's birthdays while waiting for hers to arrive is a very difficult thing.

Kimmie is not very good at being happy for others especially when it means that they are opening gifts and she is not.

--Mom

The Missing Turquoise Socks

It occurred to me a couple weeks ago that we had not seen the beloved turquoise socks for a while. I wondered what had become of them. I thought that one of the kids might have carried her clean laundry up with the socks tucked in between. I made a mental note to go through Kimmie's clothes looking for the socks.

It's a little thing, but something that brings her joy. So much of what makes her happy is simple little things.

Before I went through all her clothes we discovered a couple pair of socks behind her bed. And one was the turquise pair she loves so much.

The socks went into the laundry and as soon as they were clean again they went on her feet. She had been searching for them in her drawer off and on during the time they went missing.

--Mom

A Day at the Hospital

This past Monday Kimmie had an MRI of her spine, under sedation.

Poor little Kimmie.

We let her sleep until it was time to leave for the hospital. Then we wisked her out of bed, put clean clothes on her and hustled her out to the van. No food or drink allowed at that point.

She was hopeful, hopeful that we were going on vacation. . . . Nope.

As we drove closer to the hospital we passed the baseball field. She signed baseball game. . . . Nope.

By now she was getting a little worried. As we arrived at the hospital and pulled into the parking garage, the wimpering began along with lots of "no" signs.

She did pretty good in the waiting room. She just looked like she was fretting and worrying. Every time we had to get up and move to a different location the wimpering would start.

The wrist band they put on all hospital patients upsets her, too many memories. We always have them put it on her ankle (she can't reach it as easily to rip it off.)

Poor little Kimmie.

The nurse who came in to take her vitals was not very well received. One of the things Kimmie hates is the bandaid like thing they wrap around her index finger to monitor her oxygen level. It looks like a bandaid, one of her big phobias.

The blood pressure cuff sends her into hysterics. I don't think anyone has ever been able to get a reading until after she's sedated. Having that thing squeeze her arm gets her fighting so hard that nothing registers.

The nurse who was doing the sedation did receive a hug, but it was pitiful since Kimmie was sobbing.

Kimmie was a good girl about drinking the medicine they brought her, and once that was in her the IV was put in without any struggle.

When Kimmie woke up after the MRI, everything came off pretty quickly. It was either that or she was going to rip it all off. I think she was more worked up about the bandaid like oxygen thing than the IV.

As soon as we were in the car she started pulling at the ankle band, so we cut that off of her. She repeatedly checked her ankle to make sure it was gone and has spent most of the week telling us the blood pressure cuff is off . . . gone . . . No, No, No.

Now we wait, and wait, until July 8 when we will get the results.

--Mom

Kimmie's New Best Friend

Kimmie has a new best friend. He hasn't replaced Brown Bear, but he is going everywhere right along with Brown Bear.

Kimmie came home from school last Friday with a new Pooh Bear. She "earned" it at school. It's a beanie size Pooh and fits in the palm of her hand.

She has taken him to bed with her every night. She wants him every morning. She took him to horseback riding on Saturday and church on Sunday.

She has two others just like him that she has had for years, but they are part of the mass of stuffed animals, mostly bears, that she has.

This one is special because she earned him. She is proud of him.

--Mom

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

Child Care Part 2: Kimmie's Calling

As I have searched for child care for Kimmie, I often find myself griping to Dad about how I hate leaving her with strangers. I never know if they are going to fall in love with her or if they are going to consider her to be a nuisance and problem. Will they help her with lunch? Will they help her use the restroom? Which leads me to a whole other area of concern related to lack of privacy with a new set of caregivers tending to Kimmie.

The last time I was fuming about this, Dad turned to me and pointed out that it was also a new set of people who will be touched by Kimmie. I had to stop and think about this. I had not ever given any thought to what God's purpose and calling for her life might be. I had not thought about God having a purpose or calling for her life outside of her impact on us.

It's something to remember. Either through a care program or through taking her out to other activities, it's important that she has the opportunity to share her love, her hugs, her laughter and her joy with people, whether they be family, friends or strangers.

--Mom

Child Care Part 1: The Juggling Act

Child care is an ongoing issue that we have.

For years when Kimmie was in after-school care or summer programs we worried about whether she was being taken care of ok. Are they helping her eat? Are they taking her to the restroom regularly? Is she safe?

Then, a year and a half ago, we lost our child care. At 16 years of age Kimmie was no longer allowed to attend child care with elementary and middle school aged children. It didn't matter that Kimmie is physically about the size of a 9 year old, or that she plays about like a 5 year old, she was 16 and could no longer attend the child care.

Since that time our family has juggled Kimmie's care. Her sister is the primary after-school and summer babysitter. When she is unavailable, brother and grandparents sometimes step in to help or Dad or I sometimes take off work to be with Kimmie.

We tried a couple other options last summer, a day program for adults with developmental disabilities and a summer program for teens with disabilities. Kimmie required too much supervision for the adult program and they cancelled her. The teen program was a little scary since some of the youth were combative. One attacked me when I was picking Kimmie up.

Kimmie likes going to care programs because she likes playing with different toys and it helps break things up so she doesn't get bored.

It's an ongoing challenge that we have to make sure Kimmie always has someone with her and is taken care of properly.

--Mom

Such a little stinker

I had a meeting with Kimmie's teacher and speech therapist this week. Her teacher was telling me a Kimmie story that I just have to share. She is such a little stinker.

In our schools there is a lot of testing that the state requires in an attempt to gauge how well the schools are doing at teaching the kids. They even require the special education students to be tested and graded. Kimmie's teacher gave her a series of these tests recently. The teacher would read the question to Kimmie and Kimmie would choose her multiple choice answer. When taking the first couple of tests Kimmie picked a multiple choice letter, like"b" or "c", and she put this as her answer for every question.

When Kimmie's teacher was giving her the next test, she said to Kimmie something like, "You know that the answer to every question is not going to be "c", so lets mix up the answers this time."

According to Kimmie's teacher, Kimmie guessed and did mix up her answers. When the test was graded, Kimmie scored 100%.

I have shared this story with the rest of the family and we have to wonder if she guessed or if she knew the correct answers. It seems improbable that she could answer all the questions correctly guessing. We know that she has an exceptional memory and receptively knows and understands a great deal. Her disabilities are mostly in expressive areas like communication, cooperation and behavior.

I don't know what the test was about, but I tend to think she knew the correct answers.

She is such a little stinker, and oh, so smart.

--Mom

Sing along

Even though Kimmie is non-verbal, she likes singing. Well, she likes some songs.

She usually asks me to sing from Aladdin - the one where he is marching into Agrabah with the magical troupe to impress Princess Jasmine.

At church, she likes some of the songs -- she will even sign part of the lyrics that she knows.

But, her one solo is from The Jungle Book. "We're your friend" features Mowgli, the Vultures -- and the fearsome tiger, Sher Khan. Khan is a basso profundo, but for reasons known only to her, Kimmie has adopted the closing line of his low bass "that's what friends are for" for her only predictable sing along.

For the uninitiated, it sounds more like a big yawn than singing.

I once read that it was better to sing off-key but with great enthusiasm, than be technically perfect with no soul. She would never pass an Amreican Idol audition, but there's no question about her intensity and her joy.

--Dad

Oreos

Oreos are Kimmie's favorite food. Unfortunately about an hour after eating them she has a sugar crash accompanied by a screaming temper tantrum, especially if she has the oreos as a snack on a mostly empty stomach. I prefer that she have them at the end of a meal to try to avoid the hysteria.

Kimmie also has an exceptional memory.

Yesterday Kimmie wanted a snack and was intently rummaging in the cupboard looking for the cookies. I was busy with something so her sister helped her find the package. Kimmie then opened another cupboard to get out the bowl we put her snacks in. Her sister placed three cookies in the bowl and Kimmie sat down to snack and color. Surprisingly, Kimmie got up and left the table leaving a cookie in her bowl. After a few minutes her sister asked if she could eat the remaining cookie. I responded, "sure, Kimmie went off and left it."

It wasn't long before Kimmie was back looking for the last cookie that she knew she had left in the bowl. I told her sister that Kimmie caught her. We replaced the cookie and all was well after that.

She's a funny girl.

--Mom

Sleeping beauty

In an earlier post I wrote about "Sleep, or the lack thereof" which talked about how Kimmie did not sleep much as a baby. Her tendency to not sleep lasted until she was six years old. When Kimmie was six the doctors decided that she was ADHD and we needed to get this under control so she could benefit more from school.

Different medications were tried including one that is a blood pressure medication that has been around a very long time. The idea was that this would chill her out a bit, slow her down. The first day I gave her the medicine she was sound asleep within an hour. Since I had not been told this might make her sleep, I called the doctor's office to make sure she was ok. They assured me this often happened with the medication. I wondered how they expected her to benefit from school when she was asleep. We were advised to switch to giving her the medication in the evening, instead of the morning.

I told the doctor later that I did not know if this was helping at all with the ADHD, but for the first time in her life she was going to sleep at night and regularly sleeping through the night. I figured that if she was sleeping better, surely that would help her learn better at school. The doctor agreed.

Kimmie continues to be a good sleeper. As she moved into her teenage years she became even better and often sleeps 15-18 hours straight on the weekends. She has to get up so early for school, that by the weekend her little body needs to recover.

When Kimmie started sleeping better, Dad and I felt like new people as well. Over 6 years of being up night after night for hours on end was wearing us out.

We call her "sleeping beauty" now because, left on her own, she will sleep and sleep and sleep. She looks so peaceful when she is sleeping.

--Mom

January 23

Today is January 23, 2009. One year ago today Kimmie went to the spine doctor and was released from wearing the back brace. It has been a wonderful year watching Kimmie move and play more comfortably.

Last night I got Kimmie to sit on my lap so I could talk to her about it. I told her that tomorrow would be January 23 and that last year on January 23 she went to see the doctor, and he said she didn't have to wear the brace any more. Kimmie told me that it was on a Wednesday. She has a wonderful memory. It was on a Wednesday.

Kimmie wore the back brace for scoleosis for a little more than 3 1/2 years. We hated that brace. At first it was hard to put it on her every day. But, as time went by, we became used to it and our desire to avoid surgery became stronger, so she wore it every day, 24 hours a day.

Yes, she slept in the brace. That was always the question people asked us, "does she have to sleep in the brace?" or "She doesn't have to sleep in that, does she?"

She did not wear it when she bathed, swam or went horseback riding. We would usually let her go without it on Christmas.

One year later she has had two checks of her back and so far no surgery has been recommended. Next month, on the 23rd, she has her next check.

Today I will hug Kimmie and enjoy the feel of my arms wrapping around her back. It's so much better than wrapping around plastic and metal.

--Mom

Salt and Pepper

On Wednesday evenings we go to church. Kimmie's sister goes off to the youth activities while Kimmie and I join the pastor's Bible study in the fellowship hall. Dad is usually around getting microphones and slides and video clips ready for the study. He usually goes straight to church from work.

The church serves a meal before the Bible study, but the girls and I eat at home since they don't always like the food that is served.

When the Bible study is over we have to wait a little while for Kimmie's sister to appear since the youth activities go a little longer than the adult Bible studies. While we are waiting the people who clean up usually come in and start cleaning up the fellowship hall. They pick up the salt and pepper shakers, remove the tableclothes, stack the chairs and fold up the tables.

One evening Kimmie started playing with the salt and pepper shakers so we encouraged her to help gather them. She really took to this. Most weeks now she helps gather the salt and pepper shakers, running all over the room snatching them from the tables. I run around behind her encouraging her to hold them upright, although the floor gets its share of salt and pepper.

At first I wasn't sure what the cleaning crew thought of this. They even picked them up in different ways a couple weeks, ways that did not allow Kimmie to help. But now they place a tray out for Kimmie to put the shakers on while they take the tableclothes off. They carefully remove the tableclothes leaving the shakers on the edge of each table so she can reach them. And everyone comments on what a big helper Kimmie is.

--Mom

The Easy Child

I'm sure that many people look at Kimmie and see the extra work involved. Helping her eat, helping her dress, helping her bath, helping her in and out of the car, helping her up and down stairs . . . And I will admit that, over the years, she has been a lot of work, but as she has gotten older, she has become easier. (Or maybe we are just more accepting of the daily routine.)

Whatever the case may be, Kimmie has become our easy child. She is easy because we just take care of her. It's like taking care of any other preschool child, except she's 17.

But, you see, with the other kids there's so much more to do. They are teenagers, high school and college age. Over the years there's so much to teach them: to be kind, trustworthy, responsible, honest, dependable, competent, capable, independent . . . Then there are the issues of teaching them to drive, hoping they make good choices in friends, encouraging them to stay drug and alcohol free . . . And the list goes on, along with concerns about who are they with, are they driving safely, are they making good choices . . .

Maybe you can see, too, that Kimmie is looking easier and easier.

--Mom

Mornings

Poor Kimmie. She is not a morning person, never has been.

This year her bus comes at 6:10 each morning. We try to let her sleep as long as possible, so we get her up about 5:45-5:50.

She's hustled out of bed while her breakfast is heating in the microwave. Her clothes are already laid out. She staggers around with her hair in her face and her eyes more closed than open. Brown Bear securely clutched in the crook of her arm.

She is quickly stuffed in her clothes. Breakfast is shoveled hurriedly into her mouth. Hair brushed. Teeth brushed. Glasses washed and on. Coat.

Then she boards her bus. I'm not always sure she is fully awake when she gets on the bus, and we think she often goes back to sleep on the bus.

No wonder she's grouchy in the mornings.

--Mom

Pretend Worlds

Kimmie likes to pretend. She has a lot of "places" she visits when her mind wanders off.

Sometimes she is on a rocket ship to Mars.

Sometimes she is a butterfly sleeping in a tree in a cocoon.

Sometimes she is Aladdin walking in the lion's mouth and setting the Blue Genie free.

Sometimes she is flying on Eeyore's back.

Sometimes she is on a picnic with Winnie the Pooh having honey from a honey pot.

Sometimes she is riding on a dinosaur's back.

Sometimes she is Superman, or Batman, or Danny Phantom.

Sometimes she gets a far away look in her eyes and a sweet smile on her face and we wonder where she's wandered off to. How many other places does she visit that are locked up in her little head?

--Mom

Hallway of Doom

This week Kimmie had a bit of trauma. A trip to the pediatrician for a check-up.

She started whimpering as soon as she heard where we were going, which I didn't tell her until time to go. We were able to get her distracted. Every now and then she would start to cry, again, and I would try to distract her.

I call the hallway to the pediatrician's office "the hallway of doom", because when we get off the elevator, we turn down this long hallway and straight at the end is the door to his office. All the while we are walking down the hallway we are looking at his office door, getting closer and closer.

Now, don't get me wrong, we have a wonderful pediatrician, but he comes with shots and other fun stuff.

At Kimmie's appointment this week she had a blood test done by finger prick and a booster shot. It only took two nurses and Mom! And, of course, there was much sobbing and hugging and she wanted everyone to kiss her finger, which did NOT have a bandaid on it. (See a previous post about bandaids if you don't get this comment.)

--Mom

Doctors and Nurses

Kimmie has a love/hate relationship with her doctors and nurses. She loves them, but she hates to go visit them. Just the thought of going to the doctor or dentist can start her sobbing. Years later she can still tell us the day of the week, the month, and which body part was hurt. For instance, the last time she had blood drawn from her arm was about 4 years ago, in August. She still talks about it and tells us that it was in August. But she always hugs the doctors and nurses, often while sobbing.

There is only one doctor that she likes to go to. That's the spine doctor. She knows he doesn't poke at her. They weigh her, take an xray of her back, the doctor comes in, looks at the xray and then we talk. No hands on with Kimmie except for the hugging part. It's the only office where, when they call her name, she leaps up and runs to them with her arms outstretched for a hug.

The poor pediatrician, whose been with her her whole life, brings on one of the biggest responses from Kimmie. She sobs at the thought of going there. Too many memories of shots and finger pricks for blood tests.

The dentist ranks right up there with the pediatrician. Too much poking and proding.

The doctors are pretty good at keeping their professional manner, but the nurses often melt over Kimmie and her sobbing. She can be quite pitiful.

--Mom

Toes

When Kimmie was a baby she slept best when her head was covered up. Today, she still sleeps mostly with her head under the covers.

When she was a baby and we would check on her while she was sleeping, we would always find her head covered up and her little pink toes sticking out. We would carefully rearrange the covers so her toes were covered up. We didn't want them getting cold. Then we would turn to leave the room. Before we could reach the door of her room we would hear a rustling sound. Turning to look back at her we would find that she had kicked her feet and her little toes were once again sticking out from under the covers.

Now she likes her toes covered up as well as her head. She mostly burrows down under the covers making it look like she isn't even there, it's just a pile of blankets.

--Mom

More about Christmas

We gauge the success of Christmas by whether Kimmie actually plays with her new toys. Often when she receives new toys she will poke at them for a minute or two and then never touch them again. (Except to dump them into a heap on the floor, just cause everything has to be on the floor.) This Christmas was a success. She is still playing with many of her new gifts.

Four days after Christmas and we are still watching Danny Phantom DVDs. She is still wallowing with her new Pooh fleece blanket. She is still playing with her black genie lamp. She has played with her new Geomag sticks that are a new color, neon pink and orange. She continues to look at her new books.

And her new Care Bears and panda bear have joined the others that get moved around the room. First they are tossed out of the basket and over her shoulder. Then they might be picked up and tossed on the sofa. Then she might climb onto the sofa and push them all onto the floor. Later she might pick them all up and load them in her "Santa bag" (see previous post), also known as her Pooh bag since it is a Pooh Bear pillowcase. Her "Santa bag" is usually carried to another location in the room and then dumped out.

Christmas, part one, was a success. We will see how part two goes when we have more Christmas on New Years Day.

--Mom

Christmas 2008

Kimmie had a good Christmas. So good, in fact, that when it came time for bed she was exhausted from the excitement and all she could do was cry. She was quite pitiful at bedtime, but cute, cute, cute in her new panda pajamas.

This morning she was up bright and early, laughing and ready to play more with her new toys and watch more of her new movies. Still cute in her new pajamas. We might even let her wear them all day.

--Mom

Kimmie's Excited

Kimmie is excited. Christmas is coming soon.

When Kimmie is excited her whole body trembles. It is like she is giggling from the inside out. There is usually not any sound, just a happy face full of anticipation and the quiver of her whole body. It reminds us of excited puppies.

Tonight at supper she signed, "Thursday, Grandma, Grandpa, open presents, 25." Then she signed "excited" and quivered all over. We asked her what's the name for the special day. She signed, "Thursday, Grandma, Grandpa, 25, Christmas."

Sometimes when there are not small children in the house any more, Christmas can lose some of it's excitement. Kimmie keeps the fun that comes with children and Christmas alive in our home.

Merry Christmas!

--Mom

Kimmie's Stocking

Kimmie's Christmas stocking has two or three gifts in it. A half dozen times now she has fished around in her stocking and pulled out one of the gifts. It is always the one wrapped in Pooh Bear Christmas paper.

This past Sunday I discovered her sitting on the couch holding it. She was sitting there watching TV and rocking back and forth. She seemed content just to hold the gift.

Patience and restraint have never been her strengths, so we are very surprised that she hasn't unwrapped this gift yet.

--Mom

Men

Kimmie has always been partial to men. I used to say that for Kimmie there was "Mommy" and "Men." When she was small she would not even go to Grandmothers or Aunts. My Mom figured out how to get some hugs out of Kimmie, bribe her with cookies!

I have a few theories about why Kimmie has always liked men.

Kimmie has always been sensitive to certain types of noises and the pitch of some noises. I think Kimmie prefers the lower voices of men, especially when she was a baby. We know that Kimmie's eardrum sits farther back in her ear than normal, so there are some concerns about how that has affected what she hears and how certain noises sound to her.

From the time Kimmie was born, she has always been around a lot of men. There was Dad and Grandpa and many friends. The church we went to at that time had a number of men who worked regularly in the nursery.

And, of course, she has always been able to get her way with the men. They don't know how to say "no" to Kimmie. When she was little she would hold up her hands and smile. That's all it took for them to scoop her up and carry her around. She would sit on their arm and look around smugly. Sunday after Sunday we would go to the church nursery and whatever man was in there would be carrying her around. Since she was always very small and stayed in the nursery longer than most, this went on for years. She still holds out her hands but for hugs.

I also think that men give Kimmie a sense of security, safety, and comfort. Their strength comforts her.

If you are female, just know that Kimmie has always preferred men.

--Mom

Losing Kimmie

We have been fortunate in that Kimmie usually stays pretty close to us. We have never had a problem with her wandering off or getting very far away in a public place. We have only lost track of her a couple times. Once in a large home improvements store when she spotted a piece of play equipment and went to play on it while we were distracted. She wasn't far away and we found her quickly.

Once, however, we did have a good scare while on vacation. We were staying in a condo along North Carolina's outer banks. It was a three bedroom condo to accommodate my parents and the five of us. Kimmie was 5, her brother 7 and her sister 2. Kimmie was sleeping on a mattress on the floor of our bedroom.

One night something woke me up and I got up to check on Kimmie. She was not in her bed. I started looking around for her, moving all the blankets, looking to see if she had rolled off her mattress and under the bed . . . Dad woke up and he started looking for her. We looked under and around every piece of furniture in the bedroom, in the living room/dining room and in the children's bedroom. We looked in the bathrooms, the bathtubs, the closets. We checked all the doors to make sure they were closed and locked. We looked behind curtains, in cupboards. In our minds we knew she had to be there someplace, but it was as if she had vanished completely. During the search, her two-year old sister had awakened and sat up in her bed watching us looking under the beds and in the closet. We each went through the rooms once, twice, three or four times. No Kimmie.

I knew that Dad was concerned when he started getting dressed and putting his shoes on like he was going out beyond the condo to search for her. I was trying to figure out what we would tell the police.

Finally I said that maybe my parents had heard her up and taken her in their room with them. Maybe we should wake them up and check with them. I knocked on their door and asked them if they had Kimmie. They were confused and said, "no." I explained that we could not find her. Like us they insisted that she had to be there someplace, and they began helping us look. Seeing our two-year old sitting up in bed, my Mom went in to check on her. As she walked up to the bed she laid her hand down on the covers that our two-year old had kicked to the foot of the bed in favor of her blankets from home. My Mom picked up a wad of the covers and there was Kimmie grinning up at her. My Mom dropped the covers back in place and called for me. When I went to the door, she picked the covers up again, and there was Kimmie, grinning at me, wide awake, and very aware that we had been looking for her.

I had to sit down and breathe again. She can be a little rascal.

--Mom

Hopping Mad

We think Kimmie's pretty sweet. I like to say she is spoiled sweet. But she does have her moments. Dad sometimes says she is cute even when she is throwing a tantrum. I would not always say that, but sometimes when she gets so worked up she hops up and down . . . well that is rather funny. When we laugh it kinda disarms her. She doesn't know what to think and often forgets about the tantrum. When she is so mad she hops up and down, we usually ask her if she is "hopping mad."

It also reminds us that it took her a really long time to learn how to hop and actually get both feet off the ground at the same time. (And she does this best when she is mad.) This was not a skill that came easily. Many of the physical developmental skills that are taken for granted with normal children were difficult for Kimmie to master.

When she thinks too long about doing something, she can't get the timing right. Take throwing, for instance, when she is mad, she can throw really well. When she does it spontaneously, she does ok. When she plans it, she just can't get the timing right. She will release the object too late, after the thrust of her arm movement has ended, and the object will simply drop.

Jumping is similar. Sometimes when she is going down stairs she will stop at the last step so she can jump off it. If she jumps fairly quickly, then she is usually ok. But if she stops to think about it, she can't get the timing right. She usually is not able to get both feet off the ground at the same time. She ends up taking an awkward step.

If you ever see her hopping mad . . . remember that it's really an awesome achievement for her.

--Mom

"Not Mommy"

Kimmie is very attached to Mommy. She will sometimes say she is Grandpa's girl, or Daddy's girl -- but she loves Mommy and usually wants to be near her.

A little sign language: the sign for 'mommy' is an open flat hand, touch thumb to chin. The sign for 'not' a closed hand, thumb out, touch the thumb under the chin. Kimmie's shorthand sign combines these two into a single gesture; the "not Mommy" sign.

If Mom leaves in the evening or on the weekend, Kimmie is usually playing somewhere. She will hear the door close, and deduce instantly that Mommy has left the house.

She will turn to me and emphatically sign "not Mommy". Meaning that "you are not Mommy, and I am upset that she is not here RIGHT NOW." Usually this is accompanied by Kimmie yelling at us in annoyance. Now, she often calms down and goes back to playing when I tell her that Mommy has gone out for an errand and will be home soon.

A few years ago, she would get upset and sob, sometimes until Mommy came back home. I was a little surprised, since we could leave her about anywhere -- church, school, Grandma and Grandpa's house -- without much drama. But when she is home, she wants Mommy to be nearby.

I think Mommy feels the same way about Kimmie, too.

-- Dad (Not Mommy)

All Wound Up

Someone in our house is all wound up about the holidays. Since her birthday in July she has been telling us what she wants for Christmas. She usually signs something like this, "Open presents, Christmas. Month is December, number is 25, 25th. Kimmie open present. . ." followed by whatever gift she is thinking of at that moment.

Now that the tree is up and gifts are under it, she is ready to go. The last two days she has tried to tell us that the "number is 25." We usually respond with, "What day is this?" She sighs, her shoulders sag a bit, and she tells us the correct date.

Waiting is so hard.

--Mom

Mommy, love you

A couple nights ago, Kimmie signed, "Mommy, love you." It had been years since I last saw Kimmie sign "love". I was surprised to see her sign this. It is just not something she says. In fact we sometimes play a kind of game with Kimmie. We ask her who she loves. She usually responds with Aladdin, Jafar, Danny Phantom, and various other cartoon characters. We will keep asking her until she either ignores us or starts listing family members, but we are usually way down on her list.

Kimmie may not say "love" often, but we always feel her love as she smiles at us, hugs us, holds our arms as we walk, scoots over and sits next to us . . .

But I'll treasure the memory of her saying "Mommy, love you."

--Mom

"Love"

"Love" was the first sign Kimmie learned. She signed it a lot when she was little, but then stopped using it. Her most frequently used word is "hug" which is a similar sign to "love". Today it is extremely rare for her to sign "love".

I remember when she was about 2 years old and we took her to see the geneticist. Kimmie was toddling around the small room when the doctor came in with his assistant. He sat down in a chair and Kimmie toddled over to him. She climbed up in his lap, wrapped her arms around his neck and hugged him. Then she sat back on his lap and signed "love". The doctor and his assistant looked at us to interpret. We told them she signed "love". He melted. When we received a copy of his evaluation he noted not once but three times that she was a very affectionate child.

I have always thought this incident eliminated autism as a possible diagnosis.

--Mom

Picky eaters

Kimmie is not really very picky about food. We are lucky that way, I am sure many special kids are very hard to keep on a good nutrition diet. In fact, her siblings are more picky -- her sister doesn't like green beans or mushrooms, and her brother won't eat corn or peas. Mom doesn't like peas, but likes corn and green beans.....you get the idea. We usually fix three vegetables, and the house rule is you have to eat two.

Kimmie has had a few memorable moments though.

We (except her sister) like mushrooms in our spaghetti sauce. Kimmie had to gradually acquire a taste. The first time we had them, I gave her a nice spoonful of spaghetti and sauce. She chewed, swallowed, kind of rolling it around in her mouth. After a minute or so, out popped the mushroom and fell in her lap. It was as clean as if it had been washed. Picture a miniature piece of toast out of a toaster, only horizontally. We didn't add the mushrooms again for a long time.

Another day I served Brussels sprouts (I like a lot more variety than the rest of the family). Remember the house rule? I also really try to have the kids taste anything new, even in a small quantity. I put one sprout on Kimmie's plate, and turned to pass the dish.

Her little hand moved so fast it was nearly invisible, picked up the sprout gingerly between thumb and forefinger, deposited it neatly on my plate, and vanished. She sat there with a "Who, me? Nothing unusual here" expression, as everyone else started cackling.

I put it back on her plate, reached for the next dish -- and the same lightening fast maneuver left the sprout next to the others on my plate again. I conceded defeat, and she never did taste the Brussels sprouts. I am not sure anyone else did either, we were all laughing so hard.

--Dad

Bandaids, another scary thing

A few posts back Dad wrote about "Butterflies and other scary things". This is about another scary thing, bandaids. Kimmie has a phobia of bandaids.

When Kimmie was a baby her eyes crossed (strabismus). For a while we had to patch one of her eyes. Eventually she had surgery on both eyes to correct the crossing. The patches look and are packaged much like bandaids, thus creating this phobia.

Added to this is that bandaids are not generally associated with happy memories. . . doctors' offices, hospitals, falls, cuts. The cute cartoon pictures that are printed on them don't fool Kimmie. She still dislikes them. Not even Pooh Bear is comforting.

I remember one time when she was about 2 years old and her brother was 4. He had injured himself somehow, nothing major, a skinned finger or something. We were tending to him and then realized that Kimmie had backed herself against the farthest wall of the room and was gradually sliding along the wall until she reached the farthest corner.

She has radar when it comes to bandaids. She can spot the first aid box from the next room. She instantly starts signing "no, no, no". Usually it is her sister tending to her own latest scrape. If the first aid box is left out on the cupboard, it will bother Kimmie so much, having it visible, that she will eventually pick it up and put it away just so she can't see it any more.

Kimmie has gotten a little better about other people having bandaids. It used to be that she would not have anything to do with someone who had a bandaid on. Now she will touch the bandaid and sometimes kiss it to help it get better. She spots the bandaids quickly and becomes fixated on the person having a "hurt". Her concern can be really sweet.

--Mom

Kimmie's Santa Bag

In an earlier post I wrote about how Kimmie moves her stuffed animals from her room to the family room by tossing them down the stairs. This is very effective for the larger ones. She has another method she sometimes uses for the smaller ones. She takes her pillowcase off her pillow and fills it up. We call it her Santa Bag. She fills it up and then gathers the opening closed in her hand and hauls it off.

This last time we didn't bother to carry the pillowcase back upstairs, so she plays with it every night. She gathers her small Care Bears and panda bears, tosses them all in the bag, and then carries it around. When she settles someplace, she dumps them out, plays with them for a while and then loads the bag back up.

We always laugh because it looks so much like an overstuffed Santa bag. When she heard us calling it her Santa bag she was confused. She told us it was Kimmie's bag. Her sister asked her if she was going to throw it over her shoulder. Kimmie tried to lift it up to her shoulder but couldn't quite figure out how to get it over her shoulder.

We enjoy watching her play.

--Mom

Kimmie's best buddy

Kimmie's best buddy is Brown Bear, her teddy bear. He started out as her brother's teddy bear, but whenever he would leave the bear out where Kimmie could get it, she would latch onto it. After a while he would get tired of that and carry his bear back to his room. Eventually he decided he didn't need a teddy bear any more and he gave it to Kimmie. He had never named the bear, but Kimmie named the teddy bear "Brown Bear" after her favorite book, "Brown Bear, Brown Bear, What do you see?" (Eric Carle)

Brown Bear has been Kimmie's faithful companion nearly everywhere she goes. We do not allow her to carry him to school, but he does go to church with us. Sometimes she folds his paws so he can pray.

He always goes to the doctor, the dentist and the hospital with Kimmie. Especially the hospital. He has been to surgery with her a couple times.

Kimmie sleeps with Brown Bear. He is usually her pillow. He is pretty flat now, and we have even had him restuffed once at Build-a-Bear.

Several years ago she took a little red shirt off of one of her Pooh Bears and put it on Brown Bear. He has worn it ever since. When she does take it off, he just doesn't look like himself.

He has taken many baths through the washing machine, but we are almost afraid to wash him anymore. He is getting very delicate. Much of his fur has rubbed off.

Kimmie rocks him to sleep, pats his head and covers him up. She tells us to be quiet. He's sleeping. Kimmie pretends he is Aladdin, the Blue Genie, Danny Phantom and lots of other fun cartoon characters that she likes.

Most of all, Brown Bear gets lots of love. Lots of hugs and kisses.

--Mom

Petite

To say that Kimmie is petite is a bit of an understatement. People are always asking me how old she is. When I answer, 17, their mouths drop open and their eyes grow large. They have a hard time reconciling my answer to the little girl with the teddy bear clutched under her arm.

Kimmie wears clothes from the children's department, and probably always will. Her spine doctor has told us that her growth is complete.

We learned several years ago that Kimmie has a growth hormone deficiency. We chose not to treat the deficiency for several reasons. Our pediatrician did not recommend treatment. He did not see the point of putting her through all the shots. We were also concerned that stimulating growth would create additional spine problems, possibly worsening her scoleosis or increasing tension on her tethered spinal cord.

Kimmie being small has advantages. It is easier for us to take care of her, all of us, Mom, Dad, sister, brother, grandparents. It also allows Dad (who has spoiled her) to continue to carry her upstairs to bed after she has fallen asleep on the couch.

--Mom

Let the little children come

Luke 18:16 says, "But Jesus called the children to him and said, 'Let the little children come to me, and do not hinder them, for the Kingdom of God belongs to such as these.'" (NIV)

I will forever picture Kimmie when I hear or read this verse. She will always come to Jesus as a little child.

--Mom

Sitting at Mommy's Feet

Kimmie is a bit of a Mommy's girl. When she was a baby, she would get fussy and, often, all she needed was for me to sit down and hold her for a while. Sometimes when she gets grumpy now, we think she just needs some time with Mommy.

One of the things she will do when I am in the family room is to pick up her toys, carry them over, and sit down at my feet. Sometimes she gets more toys and brings them over. She can create quite a pile and then sits there on the floor, at Mommy's feet, playing and telling me all that she is pretending.

When I sat down at the computer tonight, she came and sat at my feet. That's what prompted me to write about this today.

When I sit on the couch, sometimes she sits at my feet and other times she sits next to me. When she sits next to me, she will slide over until she is right up against me.

It is a reminder to me that sometimes I need to put the work and chores aside and simply "be" with Kimmie.

--Mom

Just for everyone to know -- Kimmie only does this with Mommy. She likes for someone to be around, but she likes Mommy best.

-- Dad

Butterflies and other scary things

Kimmie is not afraid of very many things. She is wary of some medical items -- bandages, stethoscopes, and blood pressure cuffs are the most notable.

She is also a little shy around animals, although with some coaxing she will pet them. Horses, dogs, goats, even a few cats (if they are not too jumpy). But not butterflies.

On our first trip to San Diego, we went through the butterfly cage at the Zoo. It is a very large enclosure with plenty of space for people, plants, and hundreds of butterflies. It is a rare opportunity to have these beautiful delicate creatures land on head, clothes, fingers -- very special pictures.

While we were walking through, Kimmie was in her stroller, wearing shorts. As I pushed her along through the multi-colored clouds, a butterfly landed on her knee. How cute! I reached for the camera as she began screaming. Remember, Kimmie is highly tactile. And butterflies are still insects with tiny griping hooks on their legs. Apparently she could feel the prickle, and most emphatically did NOT LIKE IT. I shooed it away and got out as quicky as I could.

She likes the idea of butterflies. There is Pooh Bear in a butterfly suit among her collection of stuffed animals. She even has a wonderful Halloween costume that Mom made complete with wings. She will occasionally put them on and flutter around the house. Just keep the real ones far away.

On the same trip we were at Sea World. There is a tank with several dolphins that will come within reaching distance. They seem to like people -- but they are BIG and have beak full of serious teeth. Most people (including me) were at least reluctant to stick our hands in the tank. Dolphins are friendly, but what if they mistook the fingers for tasty sardines?

Kimmie, on the other hand, was ready to simply jump in the tank with them. I kept one hand on her, else she may have tried. No fear, she just reached over and gently patted this 400 pound giant.

Why would she be afraid of a butterfly, and not fear a huge animal with dozens of sharp teeth? Her perspective -- her priorities -- make her focus on the small and immediate while losing track of large and real potential risks. I need to remember that lesson and stay with what is truly important, and let the little things that are merely annoying just fly away.

--Dad

Jesus Loves Me, This I Know

When Kimmie was three and four-years old, she attended a preschool program at our local elementary school. This was a preschool program that was open to any three or four-year old. The school district would also place developmentally delayed children in the class along with extra aides. Kimmie was one of those developmentally delayed children.

The first year, when Kimmie was three, she went just in the morning. The second year, at the teacher's recommendation, she went all day. Going all day gave Kimmie the opportunity for more social interaction with the other children.

Nap-time, however, was a bit of a problem. As I mentioned in an earlier post, Kimmie didn't sleep. She didn't take naps. It became a challenge for the teacher and signing aide to find ways to keep Kimmie occupied during nap-time.

One of the activities that they would sometimes do was review Kimmie's sign vocabulary. We kept a list of all the signs that Kimmie had learned to date. The aide would say the word and Kimmie would show her the sign. This was done to make sure Kimmie didn't lose any of her signing vocabulary.

One day Kimmie and the aide were sitting on Kimmie's nap mat reviewing the list of words/signs. On the next mat was a little girl who's family was of a religious group that did not allow for participation in holiday events or any reference to religious matters. Since this little girl was laying there listening and watching Kimmie and the aide, as the aide went down the list saying each word, she skipped over all the religious words like God, Jesus, Lord, Bible, pray, etc. The aide spoke each word and Kimmie responded with the sign.

After they had gone through the entire list of words, the aide looked at Kimmie. Kimmie looked at the aide and started signing. Very deliberately, without any prompting, she signed each of the words that the aide had skipped: God, Jesus, Lord, Bible, pray, Christ, church, amen . . . The aide, who was a young Christian lady, wasn't sure what to do at that point. Without saying a word she started signing "Jesus loves me, this I know. For the Bible tells me so. Little ones to Him belong. They are weak but He is strong. Yes, Jesus loves me. Yes, Jesus loves me. Yes, Jesus loves me. The Bible tells me so."

When the aide finished signing the song, Kimmie launched herself into the aide's lap, wrapped her arms around the aide's neck and gave her an enormous hug--as if to say, "You know my Jesus, too!"

"Jesus loves me, this I know."

--Mom

Rabbit

A few years ago we were preparing for a yard sale. We were gathering outgrown toys, clothes and other stuff no longer needed. I put with the yard sale items a large stuffed Rabbit, as in Winnie the Pooh's friend Rabbit. You see Kimmie has lots of large stuffed animals, Pooh, Piglet, Tigger, Eeyore, Rabbit, panda, Scooby-doo. They take up a lot of space and I decided that she never plays with Rabbit, so he could go. Dad was not too sure about this idea. He said it broke up the set. Usually he is all for scaling back the toys, but not this time.

We continued to prepare for the sale and I kept Rabbit in the sale items. The day before the sale we moved all the stuff to the living room where we could put it outside quickly the next morning. Kimmie became quite aggitated about all that was going on, but we kept her out of the living room.

After a while, when she continued to be aggitated, we turned her loose to go in and get whatever had her upset. It was like she was on a rescue mission. She put her head down and ran into the living room. She snatched up Rabbit and clutched him under her arm. She pivoted around and ran out of the room, past us, and didn't stop until she was safely in the family room with Rabbit and all her other treasured toys.

We still have Rabbit. We won't try that again. She may not play with him, but his presence, along with many other of her stuffed animals, brings her some comfort and security. That's important, too.

--Mom

Shoestrings

If you have ever been around Kimmie much, you have probably noticed the wad of shoestrings that she carries around with her. (unless you know her from school--we don't let her carry them to school)

Her interest in shoestrings began many years ago. I started it. When Kimmie was five she was in kindergarten. The class she was in didn't work out very well. Eventually we took her out of school for about a year and I homeschooled her while we tried to find an appropriate class. As I searched for activities that would develop different skills, I found this idea of using peg board and shoestrings to practice lacing and creating designs. Kimmie wasn't much interested in working the laces through the holes on the board, but she became obsessed with unlacing the board. I would string the laces every which way through the holes, criss-crossing them and changing direction. She would work diligently until all the laces were free of the board. It became a fine motor and problem solving activity.

Eventually we discarded the board, but she had become very attached to the shoestrings. She usually has four or five that have become her favorites. She will carry these around and fiddle with them. She will find the exact center of each and tie exactly the same number of knots in each, usually two or three. Then she will line up the knots in her hand. Kimmie is very tactile. The knots in each string have to match, they have to feel the same size and length, or she will rework them.

When we are headed to church we will usually try to get the shoestrings away from her so we can tie knots in them on the way. This keeps her busy for a while working to untie them. While she is busy with one, we will try to sneak another away from her to tie more knots in it. If she catches us, she will not let us have the string. It turns into a game as we try to out-maneuver her and get the shoestrings. Sometimes the whole family gets involved--Grandma, Grandpa, sister, Mom, Dad . . .

Kimmie is very tactile and she can be very picky about the strings. They must be flat shoestrings not round. No metallic threads in them. Not too slick. They must also be solid colors. Once she has played with one for a while she knows the feel of it and it cannot be replaced with another the same color, not even the matching one that came in the same package. She can tell the difference.

--Mom

Pandas

Kimmie loves pandas. She has a nice little collection of stuffed ones, and she loves to wear her panda pajamas.

In 2000 we visited San Diego and went to the zoo. This was our first time to see real pandas. Kimmie was 8. She ran in a gift store and wrapped her arms around a stuffed panda that was almost as big as she was. Of course we hauled that panda home with us. It became her sister's carry-on when we boarded the plane. Her sister was 5 at the time and she carried it through the airports for us. We still have that panda.

In 2006 we visited San Diego a second time. The only animals Kimmie was interested in seeing at the zoo were the pandas. We pushed her wheelchair over to the rail where she could sit and watch the pandas. Actually, she didn't really watch them all that much. She was simply content just to "be" wth the pandas. Fortunately it was not busy and we were able to stay there for a while.

We visited the pandas twice that day so she could sit contentedly and "be" with her friends.

--Mom

Sea of Toys

We live in a sea of toys. Since Kimmie was just a little tiny girl she has always been happiest when surrounded by all her toys. It is not enough that she can see them; they have to be all around her on the floor. Once she has the floor covered with her toys, then she is content.

We thought, hoped, she would outgrow this, but, at 17, she still likes to sit on the floor in the middle of all her toys.

It's not enough to get out her favorites, or just the ones she is going to play with right now. No, all the toys have to be out of their containers and strewn on the floor around her.

To control the mess we try to keep a few toys in each room. That works for a while, but eventually she starts carrying them all to the family room. She will go up to her room, carry stuffed animals to the top of the stairs, then throw them down. When she has them all at the bottom of the stairs, she comes down and carries them to the door of the family room where she tosses them in. When the floor is completely covered she sits down in the middle of the mess and plays contentedly.

We all take comfort in having our favorite things nearby. Kimmie just illustrates this in an extreme way. In the big scheme of things it is just a small inconvenience that is worth the bother if it makes her feel safe and secure.

--Mom

Jesus Heart

In 2004 Kimmie began signing "Jesus heart". She would sign this at random times with no prompting. There was always a smile on her face that radiated a sense of joy and peace and contentment. In her eyes you could see that she was far away in a special place.

I tried to talk to her about it, but it was difficult to find the right words. Once I asked her if she had Jesus in her heart. The idea of having something IN her seemed to scare her. I never used that particular phrase again. I would usually just ask her if she had a "Jesus heart." Sometimes she would say "yes" and sometimes she would say "no". But it always brought her back from the far-away place that caused her face to glow.

Eventually one evening as I was giving her a bath I started talking to her in very simple terms about Jesus. I explained to her that sin was the things we do that make God sad, the things we do that hurt others. I asked her if she understood what sin was. She nodded her head "yes". I talked to her about Jesus and how he came to help us. I asked her if she understood about Jesus. She nodded her head. I explained to her that we need to pray and tell God that we are sorry for the things we have done that made him sad. And that we need to ask Jesus to be with us always to help us do the right thing. I asked her if she understood and she nodded her head "yes". By this time we were just finishing getting her pajamas on. She immediately ran out of the bathroom, leaned against the bed, folded her hands, and laid her face down on the bed. I went over and knelt next to her wondering what I should do next. I started silently praying for her. Shortly she raised her head up, signed "Amen", and smiled her beautiful, radiant smile.

--Mom

Hugs

Kimmie is a wonderful hugger -- world class by any measure. She is generous with her hugs too. They are so good that people who become familiar with her will maneuver to get in her line of sight, just for a shot at a hug.

One very severe Type A gentleman at our church learned that he could get a hug if he was at her level, instead of reaching down. Most Sundays, this stern proud man would hit his knees and hold out his arms for her. He was not ashamed or embarrassed either, he just knew a good thing.

She is often in her own world when we are shopping. Mostly she looks at the merchandise, especially toys, and lets the other shoppers pass unnoticed. Occasionally though, her hug radar goes to full alert. Somehow she knows, someone nearby NEEDS A HUG. We have never found a pattern. She will make a bee-line; we usually intercept her and ask the person if she may hug them.

A passing soldier in uniform, a young African-American man working the cash register, and a middle aged woman who appeared upper-middle class -- all were beneficiaries of her hugs. Mostly they are amused, sometimes awkwardly accepting. One lady simply started crying, very gently, and said "I really needed a hug. How did she know?"

I have no idea; it is simply her gift that she shares according to her own rules and reasons. I am just glad I get to be close when the hugs overflow and have to go to someone.

-- Dad

Hearing

Since Kimmie uses sign to communicate, many people assume that she is deaf.

When Kimmie was about 18 months old the doctors had an auditory brainstem response test done to check her hearing. At that time they decided that Kimmie had a moderate to severe hearing loss. She began wearing hearing aids. She wore the hearing aids for about four years. When she was five we decided the hearing aids were no longer necessary. After the auditory brainstem response test, I took her periodically for a hearing test in a soundproof booth. Each time she was tested in the booth her hearing had improved. The last time I took her it showed only a marginal hearing loss that put her hearing in the normal range.

Kimmie uses sign because she cannot produce speech. She has had speech therapy since she was 1 year of age, but Kimmie has never been able to make sounds resembling speech. The speech therapists have said that she doesn't move enough air over her vocal chords. The geneticist said that her inability to speak was probably a neurological problem.

Kimmie has become very good at signing.

--Mom

Siblings

Our immediate family consists of Mom, Dad, Kimmie, Kimmie's brother and Kimmie's sister. Kimmie's brother is two years older, and her sister is three years younger. As of this writing Kimmie is 17, her brother is 19 and her sister is 14.

We are fortunate that Kimmie's brother and sister both love Kimmie and hold her in a special place in their hearts. They are always willing to help with her. They babysit. They get her off the school bus. They entertain her. When they are grumpy with everyone else, they are still kind to Kimmie and she can make them smile.

--Mom

Diagnosis

We are sometimes asked what Kimmie's diagnosis is. She does not have a diagnosis.

We know that somewhere in her genetic makeup there is a chromosome that is either missing, or extra, or backwards, or in the wrong spot. We just don't know exactly which one is affected.

When Kimmie was small we took her to a geneticist. She was tested for a few disorders, but the tests came back negative. Over the years that we took her to the geneticist, it seemed like we were not receiving much benefit from these appointments. They seemed to be more for the doctor's benefit as Kimmie gave him someone different to study. Eventually the option of having fewer appointments outweighed the desire to put a name to Kimmie's disorder. After all for many years we were inundated with appointments--doctor appointments, allergy shots, speech therapy, physical therapy, occupational therapy, school meetings. . .

--Mom

Wrapped up in Mommy's love

Kimmie has never been a morning person. When she was little, say 10 or 12 and younger, she would curl up in a ball in my lap while we were waiting for her school bus to come. Sometimes she would almost fall back asleep. She could curl up into such a small ball that I could surround her with my hands and arms. I would hold her and tell her that she was "all wrapped up in Mommy's arms, all wrapped up in Mommy's love." There was also the sense of surrounding her to protect her, to protect her from the world, from people who might not be nice to her, and from difficulties she might face that day at school.

--Mom