Saturday, October 30, 2010

Happy Birthday Sweet Boy

At 6:59am this morning, Jack Christopher turned TWO years old.  I can't believe how fast the time has gone by.  My little bitty baby has grown into a toddler, right before my very eyes.  It's like I blinked and BOOM, he's two already.  Jack is still a happy, easy going, independent, eager to please little boy.  He loves music, signing, dancing, Baby Singing Time and going to the park.  Just over two months ago he started walking and he has progressed so quickly.  I just watch each day in amazement.  Jack, you have made our lives better and we are forever grateful.

We love you Doodlebug!
 Happy 2nd Birthday!

Sunday, October 24, 2010

Down Syndrome Awareness Month - Post 7

My son Jack has Down syndrome and because of this diagnosis, from birth to three years old he qualifies for State provided therapy services.  Children with Down syndrome have developmental delays and with therapy, the goal is to enhance the child's development and provide support and assistance to the child and family.  Jack will be two years old (Already? Wow!) next weekend and he receives six therapy services a week.  He receives Physical Therapy, Occupational Therapy, Speech Therapy, Developmental Therapy, Aqua Therapy and attends a Developmental playgroup.  Each therapy is an hour and occurs at home, except for Aqua which we drive to and it's a 45 minute class and the playgroup is an hour and a half and we drive there as well.

This is what we are currently working on:

Physical Therapy:  Jack is working building his core muscle strength.  The sessions focus on walking, standing, balancing, squatting to stand, bear crawl to stand, walking with an object in his hands and crawling obstacles.  Jack complains the most during Physical therapy.  Jack is walking more and more, maybe about 70/30 walking to crawling now.  He also wears SMO orthotics whenever he wears his shoes.

Occupational Therapy:  Jack is working on fine motor skills and shoulder and hand strength.  During the sessions, he works with pulling, pushing and smashing Play dough, walking wheel-barrel to pick up and place objects, building blocks, laying on his tummy and uses pointer finger to push buttons and working on pincher grasp, placing small balls into a cup and drawing vertical lines.

Speech Therapy: Jack is working on speech and communication.  The sessions focus on naming objects with sign language and words, mimicking sounds, receptive language, labeling body parts and putting sounds to actions.  While Jack's only speaking word is "Dad" so far, the Therapist is very happy with his broad sign language vocabulary and knowledge of receptive language.  Some of the session is also spent exercising Jack's mouth, tongue and bite with a chewy tube.

Developmental Therapy:  Jack is working on play skills.  During the sessions, they work on appropriate toy usage, puzzles, shape sorters, threading large beads on a string, reading books and stacking blocks.  Developmental Therapy is all encompassing as includes most of the other therapies.  The goal is to work on social skills.  Sometimes that aspect of play has to be taught, but Jack seems to pick things up very quickly.

Aqua Therapy: This is Jack's favorite therapy.  He rares signs "all done" and he loves the water.  The sessions focus on standing and walking on a platform in the water, surfing on the platform with it rocking back and forth, kicking his legs, shifting weight on a floating raft, balancing on a noodle, lifting foam bar bells, pushing off his legs from the sides of the pool and balancing on his arms with his body held in the air.  It's funny to think back at his first three aqua therapies.  The therapist had to sing during the entire session and I had to be in the water to calm him down.  Now he loves it and he doesn't even realize he's getting great therapy.

Developmental Playgroup:  We have only attended one class.  This is a stepping stone that leads right into school, with some structured activities and some play time.  It was so cute to see Jack in a school type setting.  He did very well and the therapist said he was ready for a class like this.  He participated and was interested in what the class was doing.  The class has 5 kids total and Jack is the youngest.  I think it is great so Jack can see what the bigger kids are doing and he will learn from them.  And the other kids can learn from Jack as well.  He is always eager to please and participate.

Wednesday, October 20, 2010

Down Syndrome Awareness Month - Post 6

There is an entire campaign to end the R-word.  Please see the link below.

Saturday, October 16, 2010

Down Syndrome Awareness Month - Post 5

October is Down Syndrome Awareness Month

Do people with Down syndrome look the same to you?  Although many individuals with Down syndrome share some physical characteristics, they look MORE like their own families than they do each other.

I'm Down with You - An Inspired Journey

Tuesday, October 12, 2010

Down Syndrome Awareness Month - Post 4

October is Down Syndrome Awareness Month

My son has Down syndrome.  It's okay to say the word "Down syndrome."  I've met some people that whisper the word like it's forbidden or wrong.  It is a genetic condition.  It is not a disease.  You can't catch it.  You are born with it.  Let's say it all aloud together.  Down syndrome, Down syndrome, Down syndrome!  Now don't you feel better?  Down syndrome is beautiful and nothing to shy away from or be ashamed of.

Down Syndrome is Beautiful - Video

Since we're are talking about the word "Down syndrome," let's go over some appropriate usage.  Pretend this is English class.  Did you like English class?  Hope so, because it's time for a lesson.  Down syndrome was first discovered in 1866 by an English physician named J. Langdon Down.  Dr. Down did not have Down syndrome, he merely discovered it.  Therefore (English students are we paying attention?) the word is Down syndrome NOT Down's syndrome.  No apostrophe is necessary. 

Now on to lesson two.  Down syndrome is a genetic condition. It does not define a person.  Therefore, when speaking about a person with Down syndrome, please use 'person first' language.  I will give you some examples.  Someone would say "that boy with Down syndrome has beautiful almond shaped eyes."  NOT "that Down's boy has beautiful almond shaped eyes."  Those words "down's boy" just irk me and it just doesn't feel right.  Please remember to put the child first, not the genetic condition.

Almost done, lesson three.  I know many people still say the word "Downs."  This just may be a personal preference, but I will never say that word.  My son has Down syndrome, not Downs.  Used as an adjective, the word "down" means unhappy or gloomy.   I guess it just sounds so sad, leaving off the 'syndrome' part.  That's too bad Dr. Normal or Dr. Perfect didn't discover Down syndrome.  Then our wonderful kids could be called "Normals" or "Perfects."

Last lesson, lesson four.  Never ever ever ever EVER speak, utter, whisper, shout, type, text, twitter or scream out the R-word.  For those that don't know which word I am referring to, it's the awful hurtful word retarded.  I hate even typing it.  In today's society many many people use that word to describe something they did as stupid or dumb.  Really, so a person who has an intellectual disability is stupid?  My son Jack is dumb?  I don't think so!  Jack can sign over 25 words, he can learn a new toy with just one demonstration and he can understand tons of receptive language.  Please remove this word from your vocabulary.  It is hurtful and inconsiderate.  The 400,000 individuals with Down syndrome and their friends and family would appreciate it.  It's all about respect.  And they deserve to be treated equally.

Hope you enjoyed English class boys and girls.  I always did want to be a teacher.  Thank you for letting me live out my dream.

Also, I consider myself a very open and honest person, so if anyone ever has a question about Down syndrome or Jack specifically, please do not hesitate to ask.  I would be happy to answer and explain anything.

Friday, October 8, 2010

Down Syndrome Awareness Month - Post 3

October is Down Syndrome Awareness Month

Given a prenatal diagnosis, 92% of babies with Down syndrome are terminated

If everyone could meet my son before making this decision, I know that rate would decline drastically.

This is Jack just 6 days old.

Monday, October 4, 2010

Down Syndrome Awareness Month - Post 2

October is Down Syndrome Awareness Month

Down syndrome Facts:
  • Down syndrome is a genetic condition when an individual has an extra copy of the 21st chromosome, also called Trisomy 21
  • Down syndrome occurs in approximately one in every 733 live births
  • Down syndrome is the most frequently occurring chromosomal condition
  • Down syndrome is not related to race, nationality, religion or socioeconomic status
  • There are more than 400,000 people living with Down syndrome in the United States
  • 80% of children with Down syndrome are born to women under 35 years of age
  • The most important fact to know about individuals with Down syndrome is that they are more like others than they are different. 

Down syndrome Physical Features:
  • Low muscle tone
  • A single crease across the palm of the hand
  • Slightly flattened facial profile
  • Small stature
  • Upward slant to the eyes

Friday, October 1, 2010

Down Syndrome Awareness Month - Post 1

October is Down Syndrome Awareness Month

For those that don't know, my first born son Jack was diagnosed with Down syndrome on October 30, 2008, just a few hours after he was born.  The nurses and John noticed that he showed some common physical characteristics of Down syndrome and genetic testing confirmed it a few days later. We did not know beforehand that he would have Down syndrome.  I'm not even sure I had ever seen a person with Down syndrome before my son was placed in my arms, but the amount of love I immediately felt for my son could have made my heart explode.  This was our baby.  This was who we made and I only saw perfection.  Once I learned of the diagnosis, I was amazed to find my love multiply by millions.  I knew his life would have more obstacles and judgments than most, and I loved him that much more for it.

Although Jack has Down syndrome, that is not what defines him.  He is an almost two year old who laughs, smiles, dances, acts goofy, gets jealous, crawls, climbs, throws, mimics, waves, climbs in your lap, gives hugs, blows kisses and sits adorably on a stool.  Jack is learning to walk, communicates through sign language and has beautiful almond eyes full of soul.  I would not change a thing about him.  We love him just the way he is, just like the video sings below.  Please click on the link below.