I TUTE!!!

This last week we had our church's annual No Limits conference. I help in the hospitality suite and had Julia with me one morning. She was hungry and asked me for a donut. She was very insistent that it be a SHOCK-YIT (chocolate) donut. Wanting her to have something healthy I also put a strawberry on her plate. Please keep in mind that the strawberries were right out of the fridge.

Julia was going to town on her donut when I offered her the strawberry. She bit into it and then said:

"Mom! No! I SHOCK-YIT!!"

Being the pushover I am I gave her another bite of donut and then offered her the strawberry again. She bit down and then pulled away and said:

"No, mom! Berry code!!" (berry is cold)

The neat thing about this is that Julia was able to communicate what she wanted AND tell me WHY she DIDN'T want something. YAY, Julia!

While we were sitting there some people came in and were making over Julia...complimenting her on her dress, hair, etc. After listening to them for a minute or so Julia looked at me with a knowing look and said "I tute!" (I'm cute!)

We all laughed...but inside I was amazed that she could translate their compliments into a positive comment about herself. Distill them down, if you will, and express to me the essence of what was being said. YAY again, Julia!!!

Oh...and she did eat the whole strawberry...after it warmed up!

Reasons to rejoice...

Just counting a few of our many blessings!

• JESUS CHRIST has blessed Julia beyond our ability to express to you! I firmly believe that he has answered prayers, blessed, strengthened, healed and touched Julia's life. Thank you, Jesus!
• Julia commicates! A lot.
• Julia walks.
• Julia RUNS!
• Julia is a fully integrated member of our family, church, her school and our community.
• Julia has a great sense of humor.
• Julia plays games, comments on books read to her, solves puzzles...all higher level cognitive skills.
• We are still great friends with Julia's former PT Michelle, and OT, Teresa...for 6 years now! YOU ARE BOTH WONDERFUL and WE LOVE YOU!
• Julia has a great school to attend where she is nurtured and challenged.
• Julia has a great bus driver this year...thanks Martha!
• Julia is cheerful, fun-loving, affectionate and playful.
• We just recently re-connected with Andrea and Hailey, who first introduced us to the beautiful side of Cri du Chat.
• Julia is loved and nurtured by 6 brothers and sisters, 2 uncles, 3 aunts, 4 grandparents, 7 cousins and a host of extended family, friends and adopted siblings, aunts, uncles and grandparents. I firmly believe that all this love has made the difference.
• Julia is creative...just try to hide the baby wipes from her! She will find them. And once she does, she will devise a way to get them!
• AUNT OLGA and EMILY!
• Julia has a great appetite and eats everything we do. She is 4 feet tall and weighs almost 50 pounds at 6 years old! Her reflux issues have been completely resolved and...
• Julia takes no medications!
• Julia is able to participate in Project R.I.D.E. (therapeutic horseback riding for the disabled) weekly. She LOVES the horses!
• Julia has truly unique relationships with each of her siblings, her daddy and me. It is so neat to watch her positive interaction with each of us.
• UNCLE TIM and AUNT KIRSTEN, McKENZIE, TREVOR and NOAH are going to be here NEXT WEEK! We are ALL excited about this!
• Most importantly we know that Cri du Chat has not robbed Julia of being a person. It has created a truly wonderful, unique little girl. Like a wise grandma once said about her granddaughter who also has CDC: "While we long for her to have a 'normal' life, we would not trade her for any 'normal' child in the world!" That about sums it up!

Communication

I have always prayed that Julia would be able to understand, but not just understand...that she would also be able to EXPRESS to us what she understands and how she feels. Lately we are seeing so much more actual conversation from Julia...expression of complete ideas. It is exciting to watch her.

Here are some typical conversations:

Julia: Mom! Pease! 'Mon!!! (Mom...please...come on!)

Me: What, Julia?

Julia: Mom! Nana pay dame! (Mom...Susanna's playing the game!)

Me: Oh, Susanna is playing the game?

Julia: Yas! Mom! Nana Oo-ee-ah pay dame! (Yes! Mom...tell Susanna to let me play the game)


OR

Julia: Mom! Ee-ah ky! (Mom...Olivia is crying!)

Me: What? Why is Olivia crying?

Julia: (Demonstrating on herself) Me pu air! (I pulled her hair!)

Me: Julia! That's not kind! What do you say to Olivia?

Julia: Sowwy. (Sorry.)


Sometimes it's like this:

Julia: (Running to me) Mom!! Mom!! Sowwy! Sowwy!

Me: What did you do, Julia?

Julia takes me by the hand and shows me the mess...towels pulled out on the floor, water spilled, the tub overflowing...you get the picture!

Me: Oh, no, Julia, you made a mess. You have to help clean up.

Julia: K (Okay) and actively involves herself in trying to help. Sometimes I can see where she has already tried to clean up...towels where she has tried to wipe up water, for example.


And finally:

Me: Julia.

Julia: What?

Me: Why are you throwing your books on the floor?

Julia: Cuz. (Because.)

Me: 'Because' isn't a reason!

Julia: Oh. (looks perplexed)

Me: So...why are you throwing the books on the floor?

Julia (looks thoughtful for a moment and then says decidedly): CUZ!

The flip-side is that when she is at school she DOES NOT SAY A WORD!!!! Not a WORD! They are able to bribe an occasional response out of her with fishy crackers or some other edible treat, but Julia does not communicate much outside our family. In fact, Julia will count from 1-10 with very little (if any) assistance as she climbs or descends the stairs at home, but did not meet her school goal of counting from 1-5 WITH PROMPTS for her teachers at school.

While I understand this, it does bother me. I want Julia to be able to express herself to other people as well as her family.

To be fair, I have to note that Julia changed classes this school year. She went from being the most verbal (!!!!) kid in her class to being in a class of kids that is 3 times as large with lots of kids who are older than she is. Many of the kids in her class are not as delayed in regards to speech as Julia is. S0...a new environment, some new classmates (a few familiar kids moved with her last fall too), and new teachers. Add to this Julia's 5 second processing delay between stimulus and response and all of these things conspire together to produce the silence we are seeing at school.

Her teachers are great ladies and they are working hard to get Julia to be more interactive at school. We have recently re-introduced Julia's communication devices (Big-Mac switch and 4 choice switch) in hopes that they will help her communicate more effectively outside our home. I am reconsidering PECS or some other picture-type program that will help Julia's communication.

The bottom line is that Julia DOES communicate! She can express her wants, dislikes and emotions! This is more than we were encouraged to hope for in the beginning and we are so THANKFUL that she is the bright, charming little girl she is.

SHOCK-YIT!!!

The other day Julia was just tooling around the house waiting for the school bus. She saw the cats meowing at the back door for their breakfast and came to me shouting: "MOM!!! MOM!!! Cat eat!!" I asked her if she wanted to feed the cats breakfast. She emphatically replied "YES!!" This is normally Olivia's job, and she had neglected to tell me that she had used the last of the cat food the previous day. I asked Julia what we should feed the cats and she promptly replied "SHOCK-YIT!!" (Chocolate!) We all laughed and told her that cats don't eat chocolate. She was a little confused about this...I mean, chocolate is her favorite thing ever! Why don't CATS eat chocolate?

Later that day I bought cat food and she fed the cats when she got home from school. The funniest thing is that now and then she will come up to us and say "Cat...shock-yit!) and then she just laughs at herself! She is the cutest little girl ever!

Cookie, please!

I haven't posted on any of the blogs for almost 2 months. One reason is I spent 29 days in Oregon. (Last of July and most of August!) My kids graciously sent me to visit my dearest friend for my birthday and I spent 19 glorious days with the Kings in Coos Bay. We had a fabulous time! I spent 12 days at home before returning...this time WITH my children...to spend another 10 days. This post is about something Julia did while we were there.

One of the things that we did during the second visit was participate in a Music is for Kidz production at the church the Kings pastor there. Julia was able to be a fully integrated member of the cast and it was wonderful to see her interacting with new children and adults. On Saturday, after a week of practices, we had a pizza party for all the kids and helpers. Everyone crowded downstairs into the multi-purpose room and Amy Jo made the following announcement:

"Listen up everybody...you may have seconds on the pizza, but you have to show an adult your empty plate before you can have a cookie."

There was the normal hustle-bustle of 25 children and 8-10 adult helpers as she told the kids this. Julia did not seem to pay attention to Amy Jo and those of you who know Julia well understand how distracted she is by any visual or auditory stimulation.

Julia got her piece of pizza and sat down at one of the tables to eat. A few minutes she walked into the kitchen and up to Amy Jo and me. She handed Amy Jo her empty plate and then patted my arm. Pointing to the cookies (0n the other counter) she asked me "Pease?" (Her approxomation of the word please.)

We were floored! Julia not only heard Amy Jo's announcement, but she processed it, understood it, and after a 10 minute delay remembered and acted on it! WOW!!!!

Oh...and Amy Jo gave her TWO cookies!!!!!!!!!!

Ite back...

Today Julia shook her finger at me and told me "Ite back!" She was going to the next room for a book. When she came back to us she smiled and proudly announced "Mama...Oo-ee-uh ite back!" (Mama, Julia right back!)

We burst into gales of laughter...these little things probably don't seem like much to the parents of typically developing children but to us they are pure joy! We are thankful for EVERY BIT of deliberate communication we get from our Julia!

Fetch and Carry...

Last night Julia did the neatest thing! I was upstairs in my bathroom cleaning and I said to Julia: "Julia, please go down to the laundry room and get mommy the broom." I didn't expect her to do this, but I try to talk to her like I do all the children and involve her in what we're doing. I kept cleaning and she headed out onto the landing. The lower floor was dark and so she came back to me and said "dahk." I said "It's ok, Julia." A few minutes later I heard banging and a triumphant Julia came into my room carrying the broom! As small as this seems these are the steps it took for her to do this:

• Hear and process my request
• Go out and see that it is dark downstairs
• Come back and tell me that it is dark
• Go back out and climb down the stairs
• Go through the living room, dining room and down the hall in the dark
• Open the laundry room door
• Turn on the light (I found evidence of this)
• Select the broom from our tools that include a mop, a broom and a push broom and several other cleaning implements
• Carry the broom back through the house and up the stairs
• Present it to me

Pretty awesome for any 5 year old...especially our special one! Go, Julia!