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.

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.

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.

GoTalk 4 Videos

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

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.