Wednesday, October 20, 2010
These are some of my favorite songs that went on my last two playlists:
My Wish by Rascal Flats
Defying Gravity: Glee Cast
Little Wonders: Rob Thomas
Bless the Broken Road: Rascal Flats
You are my Sunshine: Elizabeth Mitchell
For Good: Wicked Soundtrack
100 years: Five for Fighting
World: Five for Fighting
The Riddle: Five for Fighting
Somewhere over the rainbow
Seasons of Love: RENT soundtrack
I hope you dance: Leann Womack
Here is the beginning of this year's playlist:
You're not Alone: Meredith Andrews
Beautiful: GLEE cast
Happy Days are here again/Get happy: GLEE cast
I'm Yours/Somewhere Over the Rainbow: Straight no Chaser
Superman: Five for Fighting
I can only imagine: MercyMe
Smile: GLEE Cast
You Can't Stop the Beat: HAIRSPRAY soundtrack
No Day but Today: Idina Menzel
What are yours????
Sunday, October 17, 2010
That IS the point of putting him on a typical team…he has ACCESS, we can ACCOMMODATE him, and he is BENEFITTING from it all…our long term goal for Jack is that he is seen as MORE ALIKE THAN DIFFERENT. This hinges on the decisions we make now…
Here are some pics of Jack's first "real" game. :)
Friday, October 15, 2010
Friday, October 08, 2010
Thursday, October 07, 2010
Wednesday, October 06, 2010
The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The "s" in syndrome is not capitalized (syndrome).
Tuesday, October 05, 2010
- We didn't find out Jack had DS until he was two weeks old when a very observant pediatrician questioned the shape of his eyes.
- Jack was born on time with no complications. We went home after 2 days.
- My Ultrasound did not pick up Jack's AV Canal Heart Defect, a defect specific to DS.
- Jack had Open Heart Surgery to repair his AV Canal at 8 months old.
- When I was pregnant with Jack, my AFP Quad Screen came back negative.
- Jack has ABA (Behavior Therapy) 12 hours week to address certain behaviors that make it difficult to function in the real world...it's the real deal...it is WORKING!
- Jack goes to a Special Day Class (Special Ed.) from preschool. Next year, we are looking for full inclusion.
- Our team Jammin' for Jack raises money and walks in our local Buddy Walk with many of our family and friends.
- I have met some of the most amazing moms and their children...all because I had Jack.
- It took my husband and I about a week to grieve the diagnosis once we found out...then we were moving forward.
- I found DownSyn when I was researching everything and anything I could find about DS while we were waiting for the test results to come back.
- I got pregnant with Jack when I was 30.
- Other than his heart surgery, Jack has had his Tonsil and Adenoids out and ear tubs in.
- Jack rolled over at 6 weeks, sat up one week after heart surgery at 8 months, army crawled at 12 months, pulled to a stand at 14 months, cruised at 16 months, and walked at 24 months. He hasn't slowed down since, LOL!
- Jack's first sign was "more." Two months later, he was up to 20 signs. At three, he was at over 100 signs. Now, at 4 1/2, he uses 3 and 4 word sentences.
- Raising Jack is more normal than not.
- Jack has non-disjunction Trisomy 21.
- I have found that I am soooooo excited at every milestone Jack meets. Our family celebrates the things we have always taken for granted with our other kiddos.
- Jack loves music and dancing...his favorite songs are "On Top of Spaghetti," "Mickey Mouse Clubhouse Hot Dog Dance," and "California Gurls" by Katy Perry, LOL.
- Jack has lots of girlfriends. His best friend is Macy. They are two weeks apart in age, and they WILL get married, LOL.
- Our days are richer because we were blessed with our son Jack, who just so happens to have an extra chromosome. He has changed the hearts and minds of many.
Monday, October 04, 2010
Sunday, October 03, 2010
Some Common Terms, Acronyms, and Abbreviations associated with Down syndrome:
Trisomy 21 or T21: Another name for Down syndrome…Jack has three 21st chromosomes instead of the typical two. He has a total of 47 chromosomes instead of 46.
ASD/VSD/AV Canal Repair: Some of the different heart defects common on people with Down syndrome. 50% of people with Down syndrome have some type of heart defect. Some only require monitoring by a cardiologist, while others will need to have surgery to repair the defect. At 8 months old, Jack had Open Heart Surgery at Children’s Hospital Los Angeles to repair a complete AV Canal. He will most likely have to have another surgery in the future. Although the AV Canal was repaired, scar tissue called a subaortic membrane has formed and is blocking some of the blood flow. Every year at the cardiologist, I hold my breath for the words…”Time for surgery.” Luckily, we were just cleared for another year. J
ABA: Applied Behavior Analysis Therapy-This therapy is commonly misrepresented as a strategy used for kids with Autism. In reality, it is a great therapy for anyone who has behaviors that need to be tweaked in order to function appropriately in society. Jack has an amazing team working very hard to turn some of his inappropriate behaviors around. I will be devoting a couple of blog posts to ABA this month.
IEP: Individualized Education Plan-This is a legal document outlining Jack’s school placement and goals for the year. We meet at least once a year with the IEP team to determine the least restrictive environment for Jack’s individual needs. Next year, Jack will be transitioning to Kindergarten, and we want full inclusion. I am going to have to bring in a ton of research backing the benefits of full inclusion for kids with Down syndrome. If we do get this, it will be groundbreaking in our district.
PT/OT/ST/APE: Abbreviations for some of the many therapies Jack receives or has received to narrow the developmental gap. Physical Therapy, Occupational Therapy, Speech Therapy, Adapted PE. We have spent countless hours with many different therapists…I don’t know what I would have done without these ladies. I cannot praise them enough…the difference it has made in his development is immeasurable. So thank you especially to Donna, Caroline, Lindsay, Diana and Amanda! You all have such a huge piece of my heart. J
Full Inclusion: If Jack were to be in a typical Kindergarten class next year instead of a Special Education class, he would be fully included.
SDC: Special Day Class-This is Special Ed. In my district, starting in Kindergarten, there is a mild to moderate class and a moderate to severe class. The range is Kinder-2nd in one class and 3rd grade-5th grade in another. When I say Mild/Moderate/Severe, I am talking about the developmental delays.