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.

Tuesday, September 28, 2010

Hairy Tuesday - Please Vote

Thursday Update: So far the count is 5 for cutting against 3 for not cutting.  Any other voters out there?  My son's hair depends on it.

 HAIR!

  HAIR!
HAIR!
AND MORE HAIR! 

Now, should we cut Evan's crazy hair?  Or should we leave it alone because it's so darn unique and cute?

Please leave a comment and vote.
To cut or not to cut?
What do YOU think?

Sunday, September 26, 2010

Sleepless Past Month

I haven't blogged in awhile, not including video posts.  This past month has been pretty much awful for Evan's night time sleeping, so in turn, it's been awful for me, of course.  He's a great napper, but this month we've had to deal with him learning to roll one way, getting stuck on his belly, screaming, trying to wean from 2 night time feedings, trying to wean night time feedings all together, trying a cry-it-out method, trying a sleep sack, trying a swaddle and then finally adding back one night time feeding.  He was waking up every 1 1/2 hour to 3 hours.  It was horrible!  One night I even slept with my arm over the bassinet holding his sleep sack, so he wouldn't roll over and get stuck and scream.  I'm pretty sure that's what kinked my shoulder muscle/tendon so much that I went to the ER.  Although the ER was pretty much a waste since nothing was found and Tylenol is my only cure.  Needless to say, the night times have been quite tough on me, but I think I finally figured it out.  We're going to stick to the Kiddopotamus Swaddle until at least 6 months old (so he can't roll and get stuck and scream) and keep with the one night time feeding.  I guess he wasn't ready to go all night without nursing, or I just tried too many things at once.  Anyway, we've had a much better night the past 4 nights, so I think we're good and I'm not changing anything anymore of listening to any doctor that tells me a four month old can sleep through the night!  Sorry to complain so much, but thanks for listening.

These are a few other things we've been up to this past month.

Trying some rice cereal with Evan.
He did not like it and refused to open his mouth after one forced bite.  I guess we'll wait until he's 6 months old, which is only a month away.


Jack has the need to try out every toy that I bring out for Evan.  He likes to dive tummy first onto the bouncer.  It hasn't broken yet.  Here he is just chillin' in Evan's bouncer.


They like to watch Baby Signing Time together.


Hope everyone is having a nice weekend.  This weekend has been great to catch up on things.  I also just finished reading my first book in 3 years, Lost & Found.  It was pretty good and it only took me a couple weeks.  I'm glad to know I still know how to read. =)

Saturday, September 25, 2010

Baby Signing Time


I took a video to show you Jack's love for Baby Signing Time.  I think he likes it!

Wednesday, September 22, 2010

Happy Anniversary!

It's been 20 years since my Mom married her soul mate.  I am so glad she found him.  Happy Anniversary you crazy kids!


This is all of us 20 years ago today.  Wow, times (and fashion) sure have changed.  And I've enjoyed every minute of it.  I love my family!

Sunday, September 19, 2010

Jack and the Bumbo


This video cracks me up.  Jack has to test out all of Evan's toys.  I thought this video was cute and I enjoy watching Jack figure this out himself.  He's almost TWO (can you believe it?), so he doesn't need Mommy's help anymore.

Friday, August 27, 2010

Random Post Day

Today is National Random Post Day.  No, I made that up, but I have been compiling some great articles and wanted to share them with you.  These links below, I feel are must reads.  Especially with what has been going on in the media these days.



I Still Would Have Chosen You
If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you. If God had told me, "this soul will one day need extra care and needs" I still would have chosen you. If He had told me, "that one day this soul may make my heart bleed" I still would have chosen you. If He had told me, "this soul would make me question the depth of my faith" I still would have chosen you. If He had told me, "this soul would one day make tears flow from my eyes that would overflow a river" I still would have chosen you. If He had told me, "our time spent together here on earth could be short" I still would have chosen you. If He had told me, "this soul may one day make me witness overbearing suffering" I still would have chosen you. If He had told me, "all that you know to be normal will drastically change" I still would have chosen you. Of course, even though I would have chosen you, I know it was God who chose me for you. Thank you God for letting me be his mommy! ~Author Unknown

On a completely different and unrelated topic, here is a great straw usage article.  As I said, random post.  

So Long Sippy Cups, Hello Straws

Wednesday, August 25, 2010

Wordful Wednesday

Here is our sweet Evan smiling.


No words can express how cool Evan's hair is!  Seriously!!!

Some shots of the boys.  This is the closest Jack wanted to get to Evan.

Tuesday, August 24, 2010

Swimming in St. Louie

We attended a mini family vacation last weekend and had such a good time.  Great company, beautiful surroundings, sunny skies and relaxing pool time: what more could you ask for?

Senor Fiesta
Mr. Wall Street

Mom, Frank, Cindy, Rob, Amy, Avery, Andrew, Caleb, Ralph and Marge, it was so good to see you all!  We had such a fun weekend.  Thanks for a great great time!

Thursday, August 19, 2010

Wednesday, August 18, 2010

Tuesday, August 17, 2010

Date Night

Here is proof of our first night out alone after Evan was born.



We went out for a late dinner and Grandpa Gerry and Grandma Sue watched the boys.  Evan slept the whole time, thank goodness.  And Jack went to bed without crying.  I'm so glad the boys were good.  Thank you for watching them!  We had such a nice time out......alone!

Saturday, August 14, 2010

Six Years Baby!

Happy 6th Anniversary to us!




And they lived happily ever after.