31 for 21: Playlist for Jack's Life

To thank those who join our team at the Buddy Walk, I always give some type of favor...at the first Buddy Walk and last year, I gave a CD with songs that sum up my feelings for our little angel Jack. There are so many songs that bring a flood of emotions every time I hear them, and I wanted to share those with the people who chose to spend their day with us raising money and awareness for Down syndrome. I am planning to make another CD...I thought this year, I would take suggestions. If you have a child with special needs, what song(s) sums up your feelings about your child?

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????

31 for 21: Monica and David

31 for 21: Soccer Baby!!!

So the most amazing thing happened yesterday…Jack decided that he was actually going to PLAY soccer during his game! From day one, he put it in his head that he would NOT cross the white line onto the field and attempt to play with his team…he wasn’t ready…I get it. As I wrote about a few days ago, we have been working hard to use our great behavioral strategies to at least get him on the field…to at least expose him to a team sport with typical peer interactions…to at least teach him to finish something he we started…it’s been working. Slowly but surely, he has been jumping out on the field, kicking the ball a little, switching teams occasionally, and doing some major “guarding” of our goal (all at about 5-10 seconds at a time J). Baby steps…I’m SOOO OK with that…we are progressing.

Yesterday, he made a huge leap! All of the sudden a switch went on, and he played. This child ran his little heart out, and he stopped when the plays were over (most of the time. ;)). He did a throw in, and (mostly) stayed with his team. He sat during the coach’s pep talk and gave high fives! But that wasn’t the absolute best part…the game ended…time was up, but it wasn’t over. The other team watched Jack running all over that field, but he never got to put his foot on the ball…so they set up a situation so that he could score the winning goal. The team formed a wall to block the goal, and Jack had the ball all to himself. He kicked it down the field, past the “wall,” and into the goal!!! SCORE!!! The crowd went nuts, Jack was so excited, and I could barely contain myself. Never in my life have I been so touched…never. This is truly what it’s all about.

People have asked us about our decision to put Jack on a typical team instead of a VIP team for kiddos with special needs where he would most definitely have specialized instruction and be successful. The answer falls in line with the answer we have for wanting full inclusion instead of a Special Day Class when Jack starts Kindergarten. Sandi Ames, a parent advocate made the answer very clear to me. If Jack has ACCESS to the desired learning in a typical situation, if we can ACCOMMODATE him based on his unique needs in a typical situation (ie: using a motivational system with Toy Story stickers), and most importantly, if he can then BENEFIT from the learning, then there is NO reason he should have to be separated from his peers in a “specialized” setting.

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. :)

Running for the Goal

Kicking it past the other team

SCORE!!

Go #3!!

31 for 21: Jack is riding a tricycle!!!!

Every milestone with this child is huge! I love every second! Go baby go!!!!

Make video montages at www.OneTrueMedia.com

31 for 21: ABA Post on Social Stories and AYSO Soccer

So Jack is playing AYSO soccer this year on a typical team. The decision was made based on our big picture goal for Jack...that he is able to function in socially appropriate ways in the real world...that he is more alike than different...well...soccer...hmmmmm. It became apparent that Jack was not digging soccer...he cried the first game and refused to walk over the white line onto the field. I could not convince him otherwise. The only thing he did love was the team cheer at the end of the game, giving the other team five, and running through the parent tunnel, LOL. I was frustrated. After two games of no playing and no interaction with his teammates, I brought ABA strategies to his game...and holy smokes, it actually worked! One strategy that is working like a dream is the motivational system, premack principle, and Toy Story Stickers...I came armed with tons and tons of Toy Story stickers (his motivation)...he is obssessed....he loves them. We made a deal...ABA is about a lot of deal making...not bribing, but definite deal making. We use what is called the Premack principle. It goes like this: First, do an unpreferred behavior, then you get the preferred behavior or item. So soccer went like this: first go run on the field, then you get a sticker OR first stand and guard the goal for 10 seconds, then you get a sticker OR first kick the ball, then you get a sticker...you get the idea. This kid had a uniform FULL of stickers. It worked like a charm...who knew?!

Here's the other strategy that I am loving right now...social stories. What the heck are social stories??????

Social Stories are a tool for teaching social skills to children with developmental disabilities as a part of behavior therapy (ABA). Social stories provide an individual with accurate information about those situations that he may find difficult or confusing. The situation is described in detail and focus is given to a few key points: the important social cues, the events and reactions the individual might expect to occur in the situation, the actions and reactions that might be expected of him, and why. The goal of the story is to increase the individual’s understanding of, make him more comfortable in, and possibly suggest some appropriate responses for the situation in question.

Here is Jack's social story that we read to him during the week and before his games...his case supervisor created this with my guidance. I am so proud of this...it is amazing to me how well it works...take a peek. :)

31 for 21: Potty Training~We are getting there!!!!!!!

So...potty training...ugggh! I swear I will have a big ole party when both of my boys are out of diapers! Grant refuses to even go near the potty...when asked, he always responds, "I'll go tomorrow." LOL...every day he says this. He's not ready...I'm (kinda) OK with that. Jack, on the other hand, needs to be potty trained. We have built this goal into his ABA program...it is working! We devised a plan to use a motivational system to get Jack to go pee on the potty. He is totally obsessed with Toy Story, and we are slowly building a collection of all of the characters...he wanted Jessie...bad! Soooo, in came the Potty Chart. Every time Jack went on the potty, he got a sticker on his chart (Toy Story, of course!). Once he got to 10, he would get Jessie. We had her picture posted in the bathroom with his chart and made a BIG deal about it...

Well, today Jack went on the potty for the tenth time! WOO HOO! I went right out and got him Jessie...he seriously didn't let go of her all night! AMAZING! But here is the cool thing...no matter what, when we put Jack on the potty, he will go. So now we up the expectation...Instead of giving stickers for going on the potty, we will give him stickers for every time he TELLS US he needs to go...because if we don't put him there, he will still go in his pull up. I know we are on our way...next up...yep, you guessed it! Bullseye! I'll update when it happens!

31 for 21: A Little Taste of ABA

Jack is working on finishing a game, taking turns, and verbalizing wants in this video...a little taste of Behavior Therapy.

Make video montages at www.OneTrueMedia.com

31 for 21: People First Language

This comes from The National Down Syndrome Congress. This stuff never crosses people's minds, but it is important to the highest power...People First Language, People!

The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The "s" in syndrome is not capitalized (syndrome). An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them. Encourage people to use people-first language. "The person with Down syndrome", not "the Down syndrome person." A person with Down syndrome is not "a Downs". Words can create barriers. Recognize that a child is "a child with Down syndrome," or that an adult is "an adult with Down syndrome." Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults. It is important to use the correct terminology. A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with" or "afflicted by." Each person has his/her own unique strengths, capabilities and talents. Try not to use the clichés that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that "all people with Down syndrome are the same." Here are some basic guidelines for using People First Language: Put people first, not their disability A "person with a disability", not a "disabled person" A "child with autism", not an "autistic child" Use emotionally neutral expressions A person "with" cerebral palsy, not "afflicted with" cerebral palsy An individual who had a stroke, not a stroke "victim" A person "has" Down syndrome, not "suffers from" Down syndrome Emphasize abilities, not limitations A person "uses a wheelchair", not "wheelchair-bound" A child "receives special education services", not "in special ed" Adopt preferred language A "cognitive disability" or "intellectual disability" is preferred over "mentally retarded" "Typically developing" or "typical" is preferred over "normal" "Accessible" parking space or hotel room is preferred over "handicapped"

31 for 21: 21 Things about Jack and Down syndrome

Here are 21 things about Jack and our family that have to do with Down Syndrome...

• 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.

The Case for Full Inclusion Continued...

31 for 21: Some saw this on my Facebook Page a few weeks ago, but it deserves to be posted again in honor of DS Awareness Month...

College Is Possible for Students With Intellectual Disabilities - US News and World Report

31 for 21: Gathering evidence for Full Inclusion...Have the expectation and they will rise to meet you...For Jack, the future is bright! Great article below!

College Is Possible for Students With Intellectual Disabilities - US News and World Report

31 for 21: Day 2

Some Common Terms, Acronyms, and Abbreviations associated with Down syndrome:

Trisomy 21 or T21: Another name for Down syndrome…Jack has three 21^st 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-2^nd in one class and 3^rd grade-5^th grade in another. When I say Mild/Moderate/Severe, I am talking about the developmental delays.

So I didn't blog like I said...but now I have a reason!

31 for 21!

October is Down syndrome awareness month! In order to raise more awareness about Down syndrome, I am pledging to spend the next 31 days blogging about Jack, Down syndrome, and my crazy family. I am hoping to shed some light on the true normalcy of living a life with a child with special needs. I am also hoping that this will kick me inot blogging gear! I love to write...it calms me...gives me peace...I need to find my way back! So enjoy!

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