Wednesday, April 29, 2009

Love It When She Proves Me Wrong

We were visiting today with the speech and vision teachers at home. I made the comment that she hasn't made the "ba" (B) sound.

Then Miss Kim was leaving and we were saying bye bye. She was laying on the bed and Kim was sitting next to her. All of a sudden she made the "ba" sound two different times!

Sunday, April 26, 2009

Sucker for an Audience

Kelsey does her best work with a bunch of people around. She loves to entertain and get the praise from as many people as she can get.

Just ask her therapists at IDC.

Last night we had some friends stop by.

Watch Kelsey show off. (and this video was several minutes into it.)




Friday, April 24, 2009

Sunday, April 19, 2009

Farmer Girl

Kelsey's First Pigtails!











.

Saturday, April 18, 2009

Party Girl

On our way to Mommy's April 15th party!







She had so much fun with all the people and excitement at the party. There was plenty of noise and talking and attention for her!

She even decided she wanted to work a little on crawling while there with all the excitement. She really got her legs going!



Sleepy Party Girl!




.

Wednesday, April 15, 2009

Thursday, April 9, 2009

Walk, Sit, Stand, Clang

Kelsey had a great day at therapy at school today.
First, she tried the treadmill for the first time today. It has a harness suspended over the treadmill so she can't fall and then the treadmill slowly moves.

It looks kind of like this:


She cried pretty much the whole time, which I guess is something that usually happens the first time that a child gets on the treadmill.


Also I think she kind of felt like "Hey guys is anyone holding on to me here????" since she is in a harness that keeps her upright instead of someone holding her in that position.


But the therapists could feel her legs going through the walking motions herself while they were assisting her with them. I am excited for her to try it again.


Really I think she was just being her usual smart self, she knew that treadmill = exercise and that she should cry. ;)


Then we worked on bench sitting to standing to standing holding onto something. She is getting stronger all the time with this and knows when you tell her "up" to stand up.


We then did some kneeling on the stairs.


So by the time she got to sitting in the corner chair with the OT, she had really gotten a work out.


In fact, I supported her trunk a little in the corner chair which I never have to do anymore. (She was that tired!)


But then came the most exciting thing of the day...

She watched Kristen clang two stars off the star stacker together and then she did it herself.

She slid the stars together and we would say "boom" and then we would say out and she would slide her hands out (in opposite directions mind you!) and then "boom" back together. Over and over.

I had never seen her clang two toys together before and am overjoyed at how far she has come with the function use of her hands, particularly in an upright position!


Monday, April 6, 2009

The Mother at the Swings by Vicki Forman

The Mother at the Swings
by Vicki Forman


It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.

I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.

The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?

She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.
~
It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.


It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.

Here is a link to more of her writing:

http://www.literarymama.com/columns/specialneedsmama/archives.html

Sunday, April 5, 2009

Special Ballerina

Here is a news story about a special ballerina.




Kelsey may just be one too someday.


Disney on Ice


We went to see Disney on Ice. Kelsey loved it.

She enjoyed all of the singing and lights. She really seemed to be watching the action.






Thursday, April 2, 2009

"Go!" "Stop!"



This is Kelsey's favorite button to play with at therapy. (With another cute kid from the internet demonstrating.)


She is very good at following the verbal commands "GO" and "STOP."


When I make the request for her to "stop", she finds a way to make her body do it and get her hands off or her weight shifted enough to make it stop.


Her motor planning time with this button has gotten so much faster.



She really has come so far using her arms and hands in the last 6 months.


Today, for the first time, we had Kelsey bench sitting with support and pushing this button with her feet.


My smart smart girl figured out how to play the "go" "stop" game with both feet on and lifting off of the button.


And quickly too.


When her motivation is high, she really shows how smart she is.


And yes, she gets that from me.