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.

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.

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

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.

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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.

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.

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.

GoTalk 4 Videos

We needed to send our GoTalk 4 back that we were borrowing so we took a few videos to remember it!

Perspective

Being Kelsey's mom means that I get to ride a rollercoaster everyday. The problem is, rollercoasters are fun as an occasional treat, but not exactly a desirable everyday fare.

Yesterday Kelsey, Daddy and I went to breakfast. Our waitress asked us when we were almost done what Kelsey's diagnosis was. I told her Kelsey had cerebral palsy. She said her granddaughter was born with an inoperable brain tumor and wasn't supposed to live past 6. She is 10.

I said, "that's great." thinking it is always great to outdo a doctor's prediction.

She said "no" that her granddaughter could do nothing for herself, was blind and had 135+ seizures per day.

I did not know what to say.

She said she had been watching us with Kelsey. That she "took her hat off to us" b/c Kelsey was such a happy little girl. That she wished her "Haley" could experience that.

Someone always has it more difficult than you do.

Funny Girl

I asked Kelsey "Can you show Amy the "play" button?"

She said (pushed) "Yes"

I said "Kelsey push the "play" button"

And she pushed it.

I love her sense of humor.

(I should mention that "play" is up and to the left on her GoTalk which means crossing midline and reaching up high to push the button. So if she would have "got away" with saying "yes" to my question that would have been less work for her. :) )

Adaptive Easter Egg Coloring

Last night we met Fletcher and his family for supper and then for Easter Egg coloring.


We had so much fun!

My goal is to have Kelsey experience as many age appropriate things as she can. I try to find ways to work around the physical limitations so she can still have the cognitive stimulation and experiences that typical kids her age are having.

We started with the traditional Easter egg dye and then some awesome kits that Fletcher's mom, Erin, found at Target.


We also used Ziploc plastic bags and a plastic storage container to put the dye in. We were able to seal the bags with the egg and the dye in them and have the kids squish the egg back and forth to color it. We tried the same thing with the storage container (rolling it back and forth), but for us the bags worked better.

Kelsey thought it was really funny to squish the bag back and forth.

The rollers in the kit above were great to place in the kids' hands and help them/let them roll the dye onto the egg. (The rollers are a spongy material with a plastic handle.)

The stamp kit was also fun to place in Kelsey's hand and help her stamp.

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• I think the combination of the activities made it pretty successful and we sure had more fun than using an old, boring wire handle to fetch eggs out of a cup!
  
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The Harm of Low Expectations - aka "The File"

Kelsey went to a doctor recently. One who last time we saw them said essentially (not in overt words) "See you in 8 mo. I have no hope for your daughter's improvement in this particular area."

Kelsey and I are well-versed in ignoring poor "professional" opinions.

In this instance, I was fortunate enough to have one of Kelsey's therapists accompany us to the appointment. (She was kind enough to offer after I indicated how I felt about what happened last time.)

As it turns out, she was needed. The doctor did not believe what I had to say until it was confirmed by the therapist.

I understand the "professional skepticism" idea; however, I feel that I have educated myself and do not come across as a naive parent just believing what she wants to believe about my daughter.

I know from my own research the odds, percentages, etc of all kinds of things that three years ago I wasn't aware existed. I am fortunate that I have the intelligence that I do and have been able to find the answers, the research, treatments, and equipment that Kelsey has thus far needed.

But what of those parents that sit in a "care conference" with their newborn in the NICU across the hall and believe 100% what the doctors say when they say their baby will essentially be a vegetable? That she has a good brain stem and "will live for awhile"?

What of the parents that accept what a therapist has to say as 100% fact? The parents that believe that their child is not capable or smart because they are nonverbal? The parents that give up hope so as to not be accused of being in denial?

If I would have listened and believed everything I heard, Kelsey would not be who she is today.

Do you know how we know Kelsey can do the things she can?

Because I tried. I offered her the opportunity. I pushed for the opportunity. I researched what might work.

As a parent with a child with "special needs", you can not wait for the doctors or therapists to suggest to you what your child needs or is capable of.

You must determine that for yourself.

I am the one who got the Fisher Price piggy bank and tried to get her to take the coins from me. I am the one who got the knob puzzle, showed it to her and let her try to do it. I am the one that tries to give her a verbal "play by play" of what I am doing so she doesn't miss out...

I wanted to get a communication device to try with her b/c she knew left/right and was using it to make choices. We got "yes" "no" cards and guess what? She answered questions.

Then they brought a three button device (of which we use two) which we programmed to say "yes" and "no" and she accurately answers all kinds of age appropriate knowledge questions --even things I didn't teach her on purpose and 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.)

Finally I sought out a "Go Talk 4" with 4 choices b/c I thought she could do it. and guess what? She can. (can't always get the button to activate the voice, but gets her hand there.) and I am confident she could do more choices at a time if not for her motor skills.

I am so tired of constantly having to prove to everyone that Kelsey is cognitively capable. It seems no one wants to give her the benefit of the doubt and wants to put her in a box until she proves otherwise.

But more than that, it makes me sad because I know that there are other Kelsey's out there whose parents did believe all the bad news....and because they believed, they never tried.

There are Kelsey's out there trapped in themselves, never getting the opportunity to live to their potential.

Kids can't do anything if not given the opportunity. Will there be things that Kelsey won't do? Sure. (just like with any kid (maybe just different things))

But do I know that she 100% won't do the things that I never let her try?

Absolutely.

Does she sometimes surprise me?

Absolutely. (like when she chooses to play with the baby doll when I am sure she wants to put on her beads or when she says "i" on cue to my "hello" or "un" on cue in the Mr. Sun song as if she always can get her words out that easily.)

I knew holding newborn Kelsey in my arms in her room that she was in there. I remember sitting in my grandma's wooden rocking chair, holding her in my arms crying, and telling her I loved her and knew she was there. That we would make it through this. That she fought to get here and I would fight for her now that she was here.

Maybe that has been part of the difference. When we lost Kaitlyn (Kelsey's identical twin), all I could think of was getting Kelsey here "safe". If she just made it to birth, everything would be ok. That she wanted so badly to be here and was meant to be here.

When she did make it, I knew she was a fighter. I knew she had a future.

These are all things I still know and now she can start telling us.

She can start telling her own story.

I hope that some new parent reads this and it provides encouragement. I hope it provides "permission" to believe.

After all, what do you have to lose?

I will leave you with something I wrote last year in response to a similar situation with a professional.

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I must steal "the File".

It is the enemy.

It is what professional review before meeting Kelsey which explains why they expect a certain level of ability. It is the paperwork which gives people misconceptions about Kelsey before she is ever carried through their door.

Yes Kelsey has microcephaly, porencephaly, optic nerve hypoplasia, possible cortical visual impairment, and dystonic quadriplegia cerebral palsy, but she is also a bright and beautiful toddler with unlimited mental potential.

Kelsey is not as scary as her file looks.

Kelsey really does not present (as the medical people would say) as you would expect someone with all her labels to.

She is much better.

Does she have a brain injury?

Yes.

Has she worked a way around it, improving every day?

Absolutely.

Yes, No, Maybe So

Look at my girl go!

She has been doing yes/no cards on a black binder for about a week now. She is really really accurate.

Yesterday her home OT brought out this voice output device. When she was in her corner chair she couldn't quite get her arms to move enough to activate both "yes" and "no" as accurately.

Last night I sat her on my lap, so she had the ability to lean back and then forward. We asked her all kinds of things.

Later I recorded this.

"She's With Me" ~ Collin Raye

She’s with me
I proudly tell the maitre de as we arrive
He seems surprised
In a clumsy moment as he looks for room, for her blessed chair
A table stares, and their eyes show only pity
as they try to sympathize
Oh, how difficult that must be, look away
Day after day, they’ll never see, the joy you bring
Only happy at the times I know that she’s with me

I wear it like a badge of honor at the mall
I hear her call, the only way that she is able with a cry
Time to go bye bye, she can’t say why
Maybe tired, maybe hurting, god I wish that I could tell
Do I ever make her happy for awhile
To see her smile, makes my weak,
Though she can’t speak,
She let’s me know she feels my love when she’s with me

I know just what heaven looks like when I see that perfect face
For no other mortal heart could be so fair
I myself so weak and weary, so imperfect as a man
How could I be the one you chose to care for our girl
Never done a single deed to earn the right to share her light
Though it’s such a painful road we walk each day
Lord you have your ways, this I pray
On the day I stand before you, she’ll stand right by my side
When you look upon me, head hung down in shame
I’ll feel the blame, she’ll look at me,
And then she’ll speak, in that precious voice
Don’t worry ‘bout him my lord, cuz you see,
He’s with me