Dear Kelsey, Love Santa

Dear Kelsey,

When you were just one year old, Santa wrote you a letter. I bet you don't remember. ;)

Back when Santa wrote that letter, Santa really had no idea where you would go.

Santa knew what your mommy had been told and he also knew how very much your mommy loved you.  He saw the way that you worked so hard in all you did and the way you never gave up.

Kelsey, Santa is so very proud of you.

You try hard every day to the point of exhaustion.  Yet you are always ready to stay up past your bedtime if the opportunity allows.

Santa sees you make friends with so many different people.  He sees the way you have the ability to bring out the best in people and to show people's hearts by the way they choose to communicate with you.

Santa sees your patience.  He sees the way you persist to get your communication across even when others around you aren't getting it.  He sees the way you treat people kindly even when they fail to "see" the real you and what is really going on inside of you.  Your patience is a gift that he is so very glad that God gave you and hopes you will continue to grow it.

I loved the way that you persisted in your message with your mommy so she knew what to tell me that you wanted for Christmas.  You would hear nothing of baby dolls or barbie dolls or any other present.  You knew just what you wanted and even which one of those that you wanted.  You even had your brother telling Santa what you want when I saw you.

Speaking of your brother, what a fantastic gift from God he is to you.  He loves you so very much and I don't know if you know it, but when he doesn't get his "kiss and hug" to you before your bus leaves, he cries and says "But I want to give she a kiss and hug." and your mommy has to tell him that you will be back from school and he can give you one then.  You are so good for each other. 

Santa doesn't know how soon those around you will figure out how to give you your full voice.  I have watched your patience and persistence.  In the end, Santa hope that technology (and people) will catch up to your thoughts and you can put them out there for everyone.  But those who love you know and  I know that you have a message worth sharing.

All my love,
Santa Claus

Kindergarten Kelsey

It has been awhile (a LOOOOONG while) since I wrote.

Kelsey is growing up to be the amazing little girl that I have always known she was.

She is nearing the end of kindergarten!  I need to put a brick on her head to stop her from growing.  Her helpers tell me that she has grown several inches since they started playing with her.

We are still actively working towards getting her a "voice."  In the meantime, we are using partner assisted auditory scanning for conversation and academics at home.

Apparently Kelsey and I had been doing this for a long time and didn't even know it.  Now, we have an awesome resource that is helping us and we are moving forward towards documenting that sweet, smart little girl inside.

Here she is doing some math.

https://www.youtube.com/watch?v=Cu8VwAMdlLU


I have always said that Kelsey Can.  And she can.  Just a little differently than the rest of us.

Konnor's Birth in Pictures

My awesome photographer (and friend) captured these images the day of Konnor's birth. The beauty of the pictures, the way she captured the fear, anticipation, relief and joy in my eyes through the lense of her camera will be something I can never thank her enough for.

Please visit her at http://www.erinjensen.com/ if you are in the Kansas City area and need an awesome photographer.

I can't seem to get the picture show below to work. If it doesn't for you, go here.

Down the Road

I do not think that I can adequately express what it feels like.

To breathe.

To just enjoy.

To not have a cloud draped delicately over our heads.

Four years ago today we sat in a room at the children's hospital with a team of doctors, our parents and a Carousel nurse.

We were told of the "couldn't"s, we were told of the "wouldn't"s.

We were told that it was ok if we chose to do some things that we gratefully have never had to seriously consider.

It was Bryan's birthday. We left our hospital "home" to "celebrate" with pizza that night returning to a world of unknowns that evening.

We still have many unknowns, but also many healed scars.

Today is Bryan's birthday again.

But tonight I will go home from my first day of work back from maternity leave and hug my four year old and her brand new 6 week old brother.

And I will really celebrate.

More to come

But for now....


http://lundenlou.com/blog/?p=408

(Over)Due

Obviously this blog has been terribly neglected over the last several months. You all are long overdue for an update.

There has however been a reason...(which those of you in real life know)

Kelsey is set to be a big sister any day now.
My due date has come and gone.

She is super excited about being a "helper" and laughs when we talk about baby brother crying "wa wa wa."

I think this will be great for her, though an adjustment for all of us.

Here is a video of her "playing" with Baby Brother the other day.



Any prayers for a positive, "normal" labor and delivery experience would be much appreciated.

Bridging two worlds

I have made the intentional decision since Kelsey was a baby to give her as normal of an experience as possible. I am sure that initially it was my intention to somehow defy all odds and "cure" her of all of her challenges by putting enough effort in.

It has slowly evolved into a philosophy of acceptance of Kelsey's limitations, but desire that she be challenged, and challenge herself, to not stay at the level of low expectation that some might have for others in her position, but instead grow into a independent, productive girl (and someday, lady).

These goals have brought me to situations that I might otherwise like to avoid.

Honestly, it hurts to see your child struggle to do things that should come easily to them, but it is an entirely other level to put your child in with her typical peers and to see first hand everything she should be doing, saying, being.

But ultimately it does no one any good to pretend that the "typically developing" world does not exist and choose to bury your head in the "look at how good she is doing compared to how she could be" special needs world.

We take Kelsey everywhere with us. We do not not go places because of her special needs. In fact, we probably seek out more sensory and fun activities than we might otherwise do.

In November, Kelsey took the biggest step thus far in pushing into the world of the "typicals."

Kelsey attends a community preschool at a local church with the support of school district staff and an incredibly loving teacher, director, and staff there.

It has been the most heartwarming and, at times, heartbreaking thing we have done for Kelsey.

It was not the easy path. It was not the "normal" placement for someone with the physical disabilities Kelsey has.

Yet it is the only path that I felt right for my girl.

(we are blessed to be able to continue services at her private special needs school so we did not have to sacrifice therapy for placement here)

Kelsey loves to go to preschool. The kids are absolutely wonderful together. They were quick to accept Kelsey and call her their friend.

Kelsey has blossomed there. She is so talkative about it. That is the place that she most often makes her walker "go" all on her own. She is attentive and excited about going and being there.

She has been to a birthday party of a classmae. She has been called "my best friend Kelsey that God sent to me." Her classmates help her motor through the actions to songs. They get right up close to her to talk to her and engage her. They help her "catch" the ball and wait for her to drop it ("throw") it back to them.

Kelsey has done all of this on her own. It is amazing to me. After facilitating all of her interactions (mostly adults) for the first three years of her life, here is my spunky, opinionated, nonverbal daughter developing relationships with "typical" peers with help from no one.

Last night I went to a girls night out event at this church and spoke briefly to the mom of a boy in Kelsey's class. She was so nice to me. She commented on how well Kelsey was doing in her walker. She said it was so good for the kids to have Kelsey there because of the compassion for others and kindness it helps them to learn.

I know this is true.

I know that if I was in this mom's place with my son, I would feel the same. I know that diversity does make us all better for having experienced it. I guess I just wish it wasn't my little girl that was the carrier of the message.

I also know, in some ways, it is an honor for Kelsey to be the carrier of that message.

Kelsey is so close to being just another kid and yet in some ways so far.

I yearn for the time that Kelsey will be able to fully verbally (or with a communication device) be able to express all that she is.

The fun parts, the sassy parts, how smart she is...

That she will be seen for who she is and not the equipment she uses.

That she will be seen for everything she brings to the table in spite of her disability and not because of it.

Moving Moving

Kelsey moved the kidwalk all by herself! Outside!

(She had moved it some on tile floors and with her roller skates on, but she is getting stronger!)




If your name is Grammy or Grandma, you can go "here" to see the other two clips.

Checking Out

Sometimes it is so frustrating to be Kelsey's parent.

I absolutely love her dearly.

I could do without some of the baggage that comes with her.

Kelsey continues to cognitively progress.

I have not, however, seen much progress in other areas.

The questions, then, that come as a result are:

*Is what we have been/are doing still effective?

*Do we need to change course and try a different technique/environment?

*Is it valuable to continue to pursue everything we are pursuing or would Kelsey be happier just being a three year old without a vigorous individual therapy schedule?

*Are we spinning our wheels, the wheels of Kelsey's therapists and Kelsey's own by continuing to follow these pursuits?

*Would Kelsey develop the same skills on relatively the same timetable regardless of our action or inaction?

*Would scaling back our schedule cause her harm?

The problem in all of this is that there are no easy answers.

I do know that this is a marathon that I have too often treated as a sprint.

And yet the fact remains that Kelsey has far exceeded medical professional expectations of her at birth.

Is that a result of action, therapy, and dedication? Or is it simply the result of love?

Get More: Reality, Kenny Chesney, Kenny Chesney Videos

A Repeat Visit

When Kelsey was very, very tiny, a jolly man in a red suit came to our house. (You can read about that visit here.)

Last night we were so very fortunate to get the privilege of a repeat visit.


Actually, we got a small preview of what last night would be like when we ran into Santa John at the Alexandra's House party. We saw Santa across the room, but thought we might not bother him since we knew we would see him at Kelsey's house on Monday.

But Santa saw Kelsey too!

From across the room he exclaimed, "Kelsey" in his big deep voice.

She popped up to attention and she began taking steps over to see him. All the way over Santa was so kind to encourage Kelsey in her walking, throwing in a "Ho, Ho, Ho" here and there.

He was amazing. He told Kelsey he had been watching her website, knew ways she had been being a good girl, and he even commented on her latest squeaky shoe video. Mind you, Santa didn't know we were going to be at the party. Santa just KNOWS.

Kelsey visited briefly with him there and he asked her if it would be ok if he came to her house on Monday. She got a very large grin on her face. This girl is very into Santa this year! He also told her that he would be bringing a very special present for her.

(waiting for Santa)

Last night, Santa arrived much like he did three years ago. You could hear the jingle bells coming up the sidewalk...

Only this time, Kelsey was awake and watching for him. (she was sleeping on his arrival when she was a baby)

Santa held her in his arms. He told her about the jingle bells he carried and showed her how one came from each of the reindeer. We also all learned that Fred is the elf in charge of the reindeer and that Mrs. Claus requests that we only leave Santa two cookies on Christmas eve!

He told her to "Always remember that Santa loves you," just as he had when she was a tiny baby.

He gave Kelsey to Mommy and pulled Kelsey's present out of the big sack he carried.
It was a very special gift!

Santa has to cover up when he is on his sleigh delivering presents and Santa decided to share the blanket from his sleigh with Kelsey! (Santa said that whenever he gives away his blanket a nice family makes him a new one.)

Santa's blanket even has jingle bells on the corners of it!!!

Kelsey snuggled with Mommy as Santa took out his big brown book of good boys and girls. Guess who's name was on the first page?


He went over all the ways she has been a good girl, talked about her teachers and friends at school, and how well she was walking in her Kidwalk and talking with her communication device. Santa even knew that her favorite color was purple!

Santa must be taking good notes!

Kelsey was just delighted with all of this information that Santa knew.
Kelsey got back on Santa's lap for a story about how his sleigh came to be and how reindeer came to be the animals chosen to pull it. (He tried elephants first, but that didn't work out so well.) Kelsey responded verbally to Santa as he told her this story.



Then Mommy and Daddy came over for a picture with Santa and all of us.

Kelsey gave Santa kisses on the cheek and I think Santa really liked them.
It was time for Santa to go tend to his reindeer so I told Kelsey to tell Santa "Merry Christmas" with her Ipad. She did. And then she proceeded unprompted on to the "Santa" folder that I had made for her to talk to Santa with.

She asked Santa "How are Mrs. Claus and Rudolph?"

Santa told us that Mrs. Claus was doing well and that Rudolph was busy working out to prepare for the big night coming up!

She told Santa "Thank you"

Santa said that it isn't often that he gets to make happy repeat visits like ours. It reminded us how very fortunate we are with Kelsey's continued health and progress.

Thanks Santa for everything! and Merry Christmas!

Happy Kelsey Enjoys Her Back Scratched.

Kelsey's Steppin in Her Squeeky Shoes

Good Advice

A good friend told me:

Your job is to teach Kelsey about Kelsey and what she is capable of. It is not your job to fight the world to understand who Kelsey is.

You cannot carry that weight.

Teach Kelsey who she is and what she can do and she will continue to astound them.

.......................................

Too many times I worry about how people perceive Kelsey. Do they see how smart she is? Do they see past everything to see her gifts?

Can they see what I see in her?

Focusing on just Kelsey and what she believes about herself is freeing.

And that is a big enough job in itself.

The Hospital Remembers

There aren't alot of people in my life that remember my baby girl.

Not the subject of this blog, the other one...

The one in heaven whom I never forget.

Rarely a day where I don't think of her and yet I don't know exactly what to DO with her.

She is there, she is real and yet she is not.

I am filling out the "family" folder in Kelsey's communication device when we first received it.

It is pre-populated with "brother", "sister", "mom", "dad", etc.

I delete the "brother". I delete the "sister".

Then I carefully go back in and add...

I choose an "angel" icon and program it to say "Kaitlyn" when pushed.

Weeks later I am working on the programming again.

My husband hears the device say "Family".

Then "Kaitlyn".

He says "Don't make her sad." (meaning Kelsey)

I suppose I don't know what to do.

I don't want to hide her from Kelsey.

I am sure that Kelsey feels the presence of her, probably at the most basic level.

She shared my womb with her.

And yet it is alot for a three year old to comprehend.

Kelsey's cognition is unaffected.

How we approach this now, how she grows up understanding the story of her life and how she came to be, is formed now.

Is "the event" that happened, that took her sister and harmed her, something to hide? Is it something to talk about?

I know the day will come when Kelsey will ask why she is different.

What will my answer be?

How do I let her grow up knowing her story and feeling "good" (comfortable) about it?

What are the right words and when do I use them?

__________________________________

I arrive home to a box full of mail.

Included is a tiny envelope.

I know this one is for her.

Even though Kelsey's school is also at this hospital, I know.

Every year it arrives, a special night just for her.

Usually it is Christmas.

I did not go the first Christmas. There was an ice storm and it was cancelled.

I do not think I could have gone anyway. It still hurt too much. Too personal to go to such a public place.

The second year I went. All bundled up with my baby girl in the lobby of the hospital.

Some one offered to take Kaitlyn's candle and light it for me, so I didn't have to take Kelsey in the bitter cold outside.

I stood in the doorway inside the hospital with Kelsey in my arms. I strained to hear her name. I love to hear her name.

Last year Bryan, Kelsey and I went as a family. It had snowed. They held it inside in the new part of the hospital. We made a luminary with her name and the messages to her. I got to go up to the front and say her name.

We put her luminary in front of the big picture windows. The snow was falling softly outside in the courtyard.

It was beautiful.

This card recently was for a different event. It went up on the refrigerator, just a as the reminder for Kelsey's field trip did.

October is infant loss remembrance month. Fitting for me because it was the girls' due date and when we chose to bury Kaitlyn.

The event was great. As I was leaving, Bryan said to have fun and the irony of "having fun" at a baby loss event was not lost on me. But it is fun in a way. To know you are not alone.

I saw families and couples, new little babies honoring older siblings they never get to meet until heaven. What touched me most was a daddy there by himself to think about his son.

There was a blonde little girl running around with her balloon.

I know that the hospital truly does not "remember". I know that some computer somewhere kicks out our names on a list that we would never choose to be on.

But at the same time, someone designed that invitation. Someone made the program. Someone address the envelope. Someone licked the stamp to send it to my home.

And for a moment, someone remembers.

Kelsey Roller Skates in her Kidwalk

Last week Kelsey was put in roller skates at school during her class time.

It made me so happy to think that they let her experience something like that.

Bryan and I were talking about it on Wednesday night and I was thinking it over in my head.

So many times you can feel Kelsey trying to activate muscles when she is trying to walk, but she isn't getting any results for her efforts. We wondered if the skates would help give her that movement feedback.

So Bryan got some at Walmart. We put her (hated) AFOS on and then we put on the skates.

This video is what she did.



She got the balloons the first time quickly (the first couple of minutes in the video) and then it was the second time that it took her longer. But she bent her knees some (IN THE AFOS!)

So cool that she moved the kidwalk all by herself (which she hasn't been able to do) and that she went for a target and got it! She found the balloons there herself. We hadn't pointed them out to her.

Kelsey discovers her first kitten

Help us Raise Money for IDC

http://www.firstgiving.com/kelseycan

Kelsey goes to the Lee Ann Britain center each week, several times a week to go to class with other children and for individual therapies.

It is a great place which Kelsey loves. She kicks her legs in excitement when I stop the car, knowing we are at school.

Kelsey swims, plays in their gym, works with her hands, and works on communicating her needs while there.

We ask for your support in helping Kelsey and other kids like her to meet their full potential.

http://www.firstgiving.com/kelseycan

Counting Our Blessings

This little girl of mine never ceases to amaze me.

Tonight was the first time we got these puzzle pieces out. It was the first time I asked her to do anything like this with numbers.

Where does she pick this stuff up?

I am so proud.

Presume competence

I really liked this blog post and the links within.

It is the theory I have believed in all along with Kelsey. Presume intelligence and figure out a way to help her get her body to cooperate enough to show us/achieve what she wants to do.

http://teachinglearnerswithmultipleneeds.blogspot.com/2010/06/living-least-dangerous-assumption.html

Communication update

Kelsey is amazing. Her ability to learn and adapt is amazing. I am a little biased.

Kelsey has known her “left” from her “right” for quite awhile now. This probably has resulted from the weekly therapy she receives and the verbal movement cues we give her. This past fall, she developed enough motor control to make choice selections based on telling her where each toy was located. (We would present both toys in her strongest visual field and then verbally tell her “ball on left, beads on right.” She would then choose which toy to play with.) Her early intervention SLP brought “yes” and “no” cards out and she began answering questions with those.

She has progressed from a borrowed three button device which we programmed to say "yes" and "no" and she accurately answered all kinds of age appropriate knowledge questions --even things I didn't teach her on purpose. She also gets a "kick" out of having a voice. (She also thinks it's funny to say "no" 99% of the time when asked if Mama is a good girl.)

I then sought out a borrowed "Go Talk 4" with 4 choices on each of five levels. She has mastered use of this device and quickly picks up new visual icons and remembers their associated meaning from session to session. We have now sent this back to the agency we borrowed it from.

We received in return a "Go Talk 20" this week to borrow for awhile. (They did not have the "Go Talk 9" available) The "9" would have been more appropriate for Kelsey's motor skills because the squares of the "20" are smaller than her fisted hand. She is not always able to activate the voice output of the "20" because of this, but gets her hand to the desired button and leaves it there so her intent is clear.

She is able to handle visually all 20 icons filled out which is amazing considering her visual impairment. She quickly learned all the new choices we added with the "20" and has remembered them ever since without me going back over them at all.

She also learned to do sentences. (with the "4" we had programmed in one word phrases like "ball", "eat", "play") With the "20" there is enough room that we did "I feel", "I want", "I need" and then various choices for those items.

We believe Kelsey is ready to move on to a more complex device which will allow her to have more self directed conversations. We are planning to get the Ipad with the Proloquo2go software and accessories.

We were excited to trial an Ipad at the Apple store using some free downloadable children’s games. We were amazed at what she was able to do with the device and the size of the icons she was able to access. Because the Ipad is essentially a computer screen, it acts like a dynamic “light box” like she uses in vision therapy. Kelsey was very motivated and seemed to be seeing better than I had even hoped she would be able to.

For now the GoTalk 20 gives her alot more choices.

I am so proud.