Friday, June 29, 2007

Sickies

Charlie has been sick, and so have I. Actually it was last week we both had a cold. Charlie got a bout of conjuctivitis with his cold - that is, goopy eyes. Poor guy has to endure eye drops 4 times a day until it is gone. Not fun for him, not fun for mommy and daddy. It takes both of us to hold him down, hold open his eyes, and squeek two drops in any way we can. Ugh! We will ALL be glad when the five days of treatment is up!

Lucky me. I just started to feel like I was getting over the cold when I came down with the flu. Yuck! Body aches, fever, sore throat... I tell ya what, carrying a 25 pound toddler everywhere is hard enough, but when you're sick it darn near makes you feel like your heart is going to explode! Oh, and mom and dad (if you are reading this), I was missing all the good care you always gave me when I was sick. Popsicles, chicken broth, the Indiana Jones series on VHS... I was alone, so I just sat Charlie in front of the TV while I lay on the couch in misery. I'm glad to be feeling much better today.

Hey, so pray Charlie does not catch the flu as well. He's got enough going on with three teeth, possibly molars, trying to break through his gums. It can be tough being 17 months old!
--K

Thursday, June 21, 2007

"Book"

Here is a little video of Charlie saying and signing "book." You have to wait to the very end of the clip (don't worry it's only 30 seconds long). The word "book" comes out sounding like "but," and he always says it several times together "buta-buta-buta." You will see him sign "book" as well.

My hope is to post several clips showing Charlie signing and saying words (not easy!). We are just so pleased with his progress and really credit the Signing Time series for helping Charlie to learn that he can communicate.

Wednesday, June 20, 2007

curious, inventive, rambunctious, sensitive, affectionate

Many people think that children and adults who have Down Syndrome are all the same. It is a common misconception. The truth is, people who have Down Syndrome have many similar challenges, but in personality, looks, and ambitions are very different. As different as you or I. On the DownSyn Forum we participate on somebody asked what 5 words parents would use to describe their child with Down Syndrome. I posted some of the different responses below. As you can see, each description is unique. Not every description used words like 'happy' and 'content'. No one used the words like 'slow' or 'difficult'. Each child is described in terms we might use to describe typical children.

feminine, gentle, active, funny, and engaged...

observant, cuddly, strong, fearless, joyful

happy, active, determined, interested, cute

funny, flirty, calm, happy, stubborn

musical..stubborn...smart....independent...sassy

cautious, observant, snuggly, charming, and cute.

mischievous, feisty, strong, perceptive and hilarious.

silly, rowdy, a chatter box, energetic, and social

Tempered, persistent, cuddly, stubborn and observant.

And I wrote that Charlie is:
curious, inventive, rambunctious, sensitive, affectionate

All the ideas I had about Down Syndrome when we were facing Charlie's diagnosis were stereotypes that just aren't true. Charlie is nothing like what I had pictured when I was in that place of fear. Last night while getting Charlie ready for bed, a ritual Raymond and I do together whenever we can, Ray looked at me and said, "you know, I just don't think we could have gotten a better baby." It is so true. Charlie is simply an amazing little person. I know we could not love him differently no matter how many chromosomes he has. Everyday I am so amazed that we were given this beautiful gift. A wonderful and unique baby boy.

Monday, June 18, 2007

Our Baby Signing Time Success Story

Charlie is communicating! It all started a few weeks ago, Tuesday May 22nd, when he began to say and sign "hat." A couple days later he began to say and sign "ball" (sounds like 'bow'). Now he also says "bubbles" (bu-bu), "pop" (bop), "book" (bk), & "dada." He also signs "all done," "milk," "more," "shoes," "train," & "car."

When Charlie was 8 months old we bought him a set of DVD's: Baby Signing Time, volumes 1 & 2. Everyday before naptime we watch a BST DVD together. The DVD's teach American Sign Language through song. And you know what? It works! All of the words Charlie says and signs, with the exception of "bubbles" and "pop," are from the Baby Signing Time collection!

Children with Down Syndrome often develope language later than their typically developing peers. I never thought we would hear our son say his first words at just 16 months old! Now at 17 months he has a total of 12 words, including those he can say and those he can sign, to communicate with! He is learning new signs everyday. Just today I caught him trying to sign "bath" as he watched the "Sleep Song" on volume 2.

Here is a video of Charlie saying and signing his first word, "hat."


Baby Signing Time and the Signing Time series are great for any baby, toddler, or big kid (or adult!). We plan on purchasing the Signing Time series very soon. Be sure to check out their website.
http://www.signingtime.com/

Saturday, June 16, 2007

Father's Day

June 17, 2007
Fathers Day

My dear Raymond,

Today is Father’s Day. Your second Father’s Day. Congratulations. You are a wonderful Daddy.

I love all the things you do for our sweet son. I think it is really special that Charlie spends his mornings with his Dad. I am so thankful for the months you got up to tend to Charlie in the middle of the night. I love all the little games you play with Charlie that are yours and his together. I appreciate that you willingly change Charlie’s diapers no matter what is in there! You know, not all Dads are as involved, as willing to do the dirty work, or wanting to invest so much time in their children. Charlie is so blessed, as am I, to have a Daddy as dedicated and caring as you.

Thank you for being the best Dad ever!

With all my love,

Kim

Photo Sharing and Video Hosting at Photobucket

Thursday, June 14, 2007

Standing

Last night while getting Charlie ready for bed, Charlie pulled up to stand using daddy as support. Daddy was helping Charlie stand while Charlie was emphatically pointing and "talking" about the quilt hanging on the wall. Then, Daddy let go and CHARLIE WAS STANDING ALL BY HIMSELF! He only sat down once he realized he was standing on his own. In true Charlie fashion this means he will be standing on his own in one months time.

Wednesday, June 13, 2007

Meet Charlie

My husband Ray and I were excited to learn I was pregnant in May of ‘05. My pregnancy was simple, straight forward, ordinary. I was nauseous during the first semester. Energetic during the second. Ready in the third. We had forgone all prenatal testing during the pregnancy, save for an ultrasound at 24 weeks where we saw a fuzzy image of our sweet baby staring back at us with full cheeks, a pointed chin, and big round eyes.

After a wonderful labor and birth, our son, Charlie, was born on January 8, 2006 at 4:45pm. He was 7 pounds, 4 ounces, and 21 1/2 inches long. A precious newborn with brown fuzzy hair, full cheeks, and a button nose. Amazed and blessed to be little Charlie’s parents, we found ourselves deeply in love.

On his second day of life outside the womb, before we left the care of the staff at Mad River Birth Center, we had Charlie’s tiny ears screened for hearing loss. The nurse waited until Charlie was sleeping soundly, then slipped two little ear phones over his ears and administered the test as he dozed. He did not pass the test after two different tries, so we arranged an appointment with an audiologist for further testing. Most of the time when a newborn fails the hearing screening it is because of fluid or vernix in the ears that hasn’t yet cleared up. In Charlie’s case his hearing loss was permanent. A moderate sensorineural hearing loss in both ears. He would require hearing aids in order to hear well enough to understand language and learn to speak. We found this out when Charlie was 6 weeks old. The news was crushing. Our hearts broke to think Charlie had not heard all the songs we sang to him in utero. That he could not hear me coo and speak softly to him as we nursed. This was the begining of our journey to our “new normal.”

At Charlie’s 2 month check up, after updating the doctor about the hearing loss, the doctor began to ask me a lot of questions. Does he poop every day, can he hold his head up on his own, is he a sleepy baby. I’m a first time mom, and I figured the questions were routine until he asked if Charlie had smiled yet. No, he hadn’t smiled yet... Next the doctor said “I think Charlie may have Down Syndrome.”

Down Syndrome. The doctors words hit hard. I came in a beaming new mother, now all I could do was hold Charlie close as the doctor shared with me the signs of the genetic disorder. We would need to do a blood test called a karyotype in order varify the presence of a third copy of the 21st chromosome. I listened calmly, but with a growing pressure in my chest as I fought back tears. I agreed to the test, tucked the order for the karyotype into the diaper bag, dressed Charlie, stopped at the front desk to schedule his next check up, then drove straigth to the hospital lab.

We waited three endless weeks for the results of the test that would tell us if our son had Down Syndrome or not. They were some of the toughest days we’ve spent with one another. We looked at our sweet boy and felt like he was slipping away from us. All our dreams and expectations for our son were threatened. We were so afraid of what our future may be like with a developmentally disabled child. We worried about what the future may be like for Charlie. Would he have friends? Would he be included at school? Would he be accepted by his community? We cried, we prayed, we held each other. And, you know what Charlie did? Charlie smiled. He smiled because he knew everything was going to be alright.

* * * * *

Charlie does have Down Syndrome. And, to our surprise life with our little boy is nothing of what we pictured in those early days. Now 17 months old, Charlie is bright, energetic, and determined. He can crawl and pull to stand, he gets into everything, he communicates through words and sign language. He loves to play with other children. He is accepted by his community. He is sought out by others.

Charlie benefits from Early Intervention services. He sees a Physical Therapist, a Speech Therapist, and has an infant teacher come to our home once a week. He is a bit behind his typically developing peers, but with all the wonderful support we recieve he is reaching every milestone in his own time. We are excited about all of Charlie’s accomplishments and growth. We are excited about his future.

This morning as I watch my beautiful son creep about the house I am overcome with pride and love. In a little over a year I went from feeling like “why me?” to feeling like I’ve won the lottery. I’ve never won anything in my life, but when only 1 out of every 800 babies is diagnosed with Down Syndrome I can’t help but feel like I am that lucky One. Learning your baby has a disability is scary. But as the dust settles fear gives way to acceptance, acceptance to love, and love gives way to a “new normal.” A normal where you begin to see past the challenges, the differences, and handicaps and truely enjoy your child for who he is and the richness and depth that is his unexpected gift to you.
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