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