Love Notes to my Family

The Process of Inclusion…Jack’s First 3 Weeks of Kindergarten

2011-09-26T12:19:00.000-07:00

What I have learned about inclusion so far…

• It is a process, a journey, and an adventure!
• It is going to take Jack time to adjust to the “Kindergarten way,” but he WILL adjust
• Having a 1:1 is a GODSEND…actually…HIS 1:1 is a godsend
• If you don’t have a proactive team, everything will fall apart in an instant
• Jack is considered one of the gang already…he has friends…lots of them. ;)
• We’ll have good days and bad days, and that is just part of the process.
• Inclusion can work with the right supports.

What gives me hope about this whole process…

On the first day of school, I got a note from Jack’s 1:1…this is what it said:

“Dear Mr. and Mrs. Clark,

Here are a few highlights about Jack’s first day of Kindergarten:
• Jack and a friend took the attendance to the office.
• The students made “First Day of School” hats
• At recess, Connor pulled Jack (in the red wagon) all around the blacktop.
• Jack’s reading buddy is a second grader, Ted. They read a book together, Three Billy Goats Gruff. It was so cute, Jack would tell Ted to “Turn the page.”
• So much more fun!
I’ll try to write each day so you can talk with Jack about his day. Thank you for the honor of helping in your son’s class.”

I have received a one-page note almost every day since detailing specific POSITIVE highlights of Jack’s days…like
“Picture Day! Jack was awesome. He walked in line all the way!”
OR
“At snack recess, several Room 2 friends came up to say hi to Jack.. Jacklyn, Declan…Hannah also came to our tables to eat with Jack”
OR
“Isabella’s mom came in to help the students make pancakes. Jack waited for his turn very nicely. ☺”

This is just a sample, and I look forward to these notes every day. These notes are what keeps me going and gives me the hope and encouragement I need to know that this is what I want for my son. This is the reason why…this is what inclusion is all about. It has not been easy, and my next blog post will talk about our struggles so far, but the positives, the benefits, make it all worthwhile. I feel very blessed at this moment in time and can’t wait to see what the future holds…

It's all about language right now...

2011-03-26T08:23:00.000-07:00

Right now, we are working HARD on developing more language in Jack. A year ago, Jack was producing 1-2 word phrases...now, he consistently uses 3 word phrases/sentences to communicate. We're moving slowly into the 3+ word sentence zone, and there are a few ways we do this. One powerful way that we have instantly gotten results with is the visual cue. One of Jack's behavior goals is about eloping (basically, he likes to leave, or more specifically, escape!). We are trying to extinguish this behavior...it's my BIGGEST safety concern for him right now, and we are making progress. Just six months ago, I couldn't take him anywhere (grocery store, softball game, etc...) without him running off. We literally had to strap him in the stroller during Bella's softball games while Grant was able to be free because we couldn't trust him...he WOULD eventually run away. It broke my heart. If only he would stay put, he could play too. :( Now, we are in a much different place. I know that the strategies we have put in place will keep Jack close by most of the time...so much more fun for him and so much less stressful for us.

So one of the places we fear Jack will leave is our house (and PS~if he escapes, he keeps going...he doesn't *realize* he needs to go back). We have a chain on the top of our front door and deadbolts on our backyard gates...so he can't get out. One of the ways we are trying to solve the problem is by building language into the goal and teaching Jack that he CANNOT open a door without asking someone. We came up with a question that he needs to ask anytime he opens a door (the front door, back door, refrigerator door, his sisters' bedroom door, etc)...MAY I OPEN PLEASE? To remind Jack that he needs to ask the question, we put the question at his eye level on the doors in our house...when we did this, we had INSTANT results...it was amazing to me...First of all, he is asking before he goes outside. Second, he is using a four word question to ask. Third, he is beginning to learn 1:1 correspondence and early reading skills...so cool. I got a little video of Jack this morning letting our dog outside. It's a 3 minute video and at the end he uses the visual cue to open the back door. I really am SO proud of my little man!

A New Venture...yes, you heard me right! I'm taking on something else!

2010-11-23T06:49:00.000-08:00

So…I suck as a blogger…I really and truly do! For that I apologize! I am going to make up my 31 for 21 posts…so there will be 31 posts…eventually! So what does today’s post hold?! Today is about Juice Plus…I’m pretty excited to share this…

When Jack was born, I was on a mad search to find something to narrow the developmental delays, sharpen his memory, decrease his risk for Alzheimer’s, improve his cognition, help his immune system…you get the idea. After countless recommendations by parents of kiddos with DS and countless hours of research, I began giving Jack Juice Plus to bridge the gap on what he needs and what he’s actually getting nutrition-wise…eventually, I began taking Juice Plus myself…let’s face it…four kiddos + not enough sleep + a zillion things going on + poor eating habits = a VERY tired and sick all the time me! Several months ago, I began to make some changes in my life to better take care of the one who takes care of everyone else. I can honestly say that the combination of these things has increased my energy level 10 fold…I am not tired during the day…EVER! No more crashing in the afternoon…it’s literally miraculous to me…I’ve never NOT been so tired I can barely stand up by the time 3:00 in the afternoon hits…it’s not about the quantity of things I do for my health, it’s about the quality…this is one of the essentials. My health and energy level has also made a believer out of my husband…right now, he is tired exhausted ALL DAY LONG…we are about to start him and the rest of my kiddos on JP…will keep you posted on John’s results…no doubt they will be the same as mine.

So here’s the deal…

What exactly IS Juice Plus?
WHOLE FOOD NUTRITION from naturally occurring phytonutrients from 17 different fruits, vegetables, and grains in capsule or gummie form. No kidding…17 fruits and vegetables juiced and then made into a powder,,,all of the nutrition is there. And the results are backed by tons of clinical research.

Why does every person on the planet, ESPECIALLY OUR KIDDOS, need it?
In simple terms, we’re unhealthy! Based on the Archives or Pediatrics and Medicine, Over 93% of kids don’t get the recommended 3 servings of veggies a day.

1 in 3 Americans born in 2000 will develop diabetes.
1 in 4 children is obese.
80 million people have some sort of heart disease (American Heart Disease).
1 in 3 and 1 in 2 men will have some sort of cancer in his or her lifetime (National Cancer Institute).
64% of adults are overweight (Center for Disease Control and Prevention)
Our national healthcare expenditures were 2 TRILLION in 2005 or $6,700 per person.

Why are we so unhealthy?
Poor Food Choices (ME!)
Not enough Water (ME!)
Not enough exercise (AT LEAST I DO THIS!)
Stress (ME!)
Sleep Deprivation (SOO ME!)
Approach to medicine: “Treatment” instead of “Prevention” (SOOOO TRUE!) No wonder we spend so much…if it ain’t broke, we don't try to prevent...we just wait until it is broke...that = more $$$$ spent!

SOOOOO, what to do about this…
PREVENT disease instead of CURE disease…what’s the recommendation?
7-13 servings of fresh fruits and vegetables EVERY DAY!

What is the problem? Almost NO ONE does this…

So how does Juice Plus help?

It’s the not a REPLACEMENT for fruits and vegetables..it’s the next best thing!
Seriously, it’s convenient, easy to take whole food based nutrition, rich in vitamins, fiber, minerals, antioxidants, and phytonutrients. We need to eat 7 to 13 servings of fresh fruits and vegetables every day. Because we are busy, most of us can’t, don’t, or won’t!

For less than a cup of coffee a day, I’m worth it, and my kids are worth it…I haven’t been this excited about something since Thinking Maps, LOL. And those of you who know me know that that is MAJOR! I am so sold that I’ve done something a little crazy (I mean exciting!). I recently became a distributor of Juice Plus…now I know what you are thinking…don’t you have enough on your plate as it is???!!! Yes, I do in fact…but that’s how important this is to me…

I equate this to my job working for Thinking Maps…TM is a research based, brain based strategy that will increase critical thinking and achievement in ALL kids if implemented the right way, and it is backed by tons of research. I have seen it work for kids when nothing else seems to work. When I go into a school, I ALWAYS have skeptics…sometimes it’s the whole staff…I have walked into trainings where I have 50 teachers giving me dirty looks…they don’t scare me, LOL…because I have never walked out of a training where at least 90% of the teachers weren’t sold…it’s just good teaching…it’s simple, and it works to the highest power for our kids. Teachers see the passion I have, and it rubs off…but the thing is...I could suck as a presenter (hopefully I don’t, LOL), and teachers would still love Thinking Maps…they truly sell themselves…they just make sense. It’s the QUALITY of the strategy not the QUANTITY of strategies/programs that teachers should have.

Juice Plus is the same…there will be skeptics, but there is no denying the research and anecdotal evidence…it truly is what it says it is...nothing more and nothing less. I don’t need to sell it…it sells itself. I sought out my own distributor because I wanted this for my family…she did not seek me out. I want my family to be as healthy as possible…and it’s not about the quantity of things I do to make that happen, it’s about the quality of the things I do…it’s that simple.

Jiminy Christmas…this gets the award for the longest blog post ever, LOL…if you made it this far, I thank you. ☺ If you have questions or just want to know more, I am launching my business at a Wellness Presentation next Thursday, December 2 at my house (details below). I’d love for you to stop by…It will be short and sweet…if you don’t care about Juice Plus, come by anyways to have a glass of wine! ☺

31 for 21: Playlist for Jack's Life

2010-10-20T19:50:00.000-07:00

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

2010-10-20T06:40:00.000-07:00

31 for 21: Soccer Baby!!!

2010-10-17T19:39:00.000-07:00

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!!!!

2010-10-15T20:35:00.001-07:00

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

2010-10-15T20:09:00.000-07:00

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!!!!!!!

2010-10-08T20:49:00.000-07:00

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

2010-10-07T11:05:00.001-07:00

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

2010-10-06T19:56:00.000-07:00

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

2010-10-05T22:15:00.000-07:00

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...

2010-10-05T06:39:00.000-07:00

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

2010-10-04T21:45:00.000-07:00

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

2010-10-03T21:22:00.000-07:00

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!

2010-10-02T07:18:00.000-07:00

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!

Grab This Button

I've become more of a blog reader than an actual blogger...ugggh!

2010-08-10T15:12:00.000-07:00

I love the idea of blogging...I enjoy reading blogs every night...so why can't I find time to write...ever?! I am going to make a concerted effort to get this thing up and running again...promise! So tonight, when I have a second...I am going to do a much needed update! Promise!

A Long Overdue Blog Post

2009-04-30T14:30:00.000-07:00

For those I owe a phone call, it will happen eventually…but until then, I wanted to take my newly found free time to update everyone on Jack and his new school adventures.

For everyone who didn’t know, my little angel Jack turned 3 a few weeks ago. This is a huge milestone as this is the time he enters into the public school system. We have been transitioning him out of Early Intervention for about six months now in preparation for this new journey. During the six month process, John and I were overwhelmed with meetings and assessments meant to help us and the school district decide on the best services for Jack once he turned 3. It all culminated a week before his birthday with the BIG meeting (also known as an Individualized Education Plan or IEP) that put in writing where he would go and what services he would receive. John and I decided early on in the process that we wanted Jack to be in a Special Education preschool right now with a long term goal being in a typical classroom when he enters Kindergarten. This all fits in with our lifelong goals for Jack. We see him as a kid first…we don’t define him by his disability, and we want the world to see him in the same light. He is an integral part of our family, and in the same turn, we want him to be an integral part of society. Soooooo, with that in mind, John and I thought that being in “Special Ed” for preschool, where he is getting the intensive schooling he needs to prepare him for the real world of Kindergarten is an A-OK place to be.

So fast forward to April 13…Jack’s first day of school…well, let me back up for a minute…there are a few important points to mention…our biggest push was that Jack go to our home school where Bella will start in the Fall. We thought that since they had a Special Day Class (SDC), it would be perfect to have Jack around his sister and at the same time, get used to the school that he will (hopefully) be attending for the duration. Fortunately for us, the school district agreed. They also agreed to five half days a week of preschool with individual pull outs for Speech, Adaptive PE, and Occupational Therapy. He got everything we asked for…phew!
So back to the first day…Jack goes in the afternoons…it’s tough because he doesn’t really have time to take a nap…so I guess naps are history! We got him all spiffed up, armed him with his lunch and new Elmo backpack, and took him to school. We walked in the classroom, and the meltdown began…flop, drop, and roll, screaming, hysterical Jack. We eventually left, and I had a bad feeling the whole time he was gone. Sure enough, when I arrived to pick him up, the teacher said she almost called me because Jack supposedly banged his head against the door and sobbed for an hour L. My child does not bang his head, and if he was, why DIDN’T she call me?! I was miffed with a capital M. I was miffed she didn’t call me, and I was miffed because I wasn’t so sure now about this teacher who I was SO sure about at the IEP. Long story short, John told me I needed to mellow out and that it would be fine sooner than I thought…he was right…what else is new?! LOL
Day Two…30 seconds of crying…1 flop drop and roll…great day.
Day Three…no crying…was fine with me leaving…blew me a kiss goodbye.
Day Four…Had his backpack on at 10:00 ready for school...two hours early.
Today…Day 14…Ran in the door yelling Hi! Hi!!!!!!! to his classmates…Sat right down with his lunch in his special chair by the teacher…forgot I was there…I walked out…as his teacher told John the other day, “He LOVES school!”

So needless to say, I’m thrilled. So far, I’m very pleased with everything…some cute things that the teacher and aides have told us about Jack so far…
-The 5th graders come to be book buddies on Friday afternoons…Jack’s teacher told me, “He’s died and gone to heaven!” LOL
-Yesterday they told me Jack wins the best dressed award…duh!
-Jack is about HALF the size of everyone in his class…they all love him and think he’s their pet…they actually pet his head…LOL!
-He is talking A LOT! And sitting for 20 minute periods of time! And standing in line with his class without running away! Cool Stuff!

So that’s the latest…I am actually getting some actual TIME to do things (like blogging right now!) because on Tues, Wed, Thursday, Jack and Bella are in school and Grant has been napping all the way through…things are finally STARTING to calm down for me…my house has stayed clean all week and my laundry is all caught up…all good things! Hopefully this isn’t the last you’ll hear from me for awhile, but…

Rasberries!

2009-03-14T07:37:00.000-07:00

Guitar Hero

2009-01-03T18:30:00.000-08:00

Happy 2009! I hope everyone had a happy holiday season. My New Year's Resolution is to blog more, so we'll see how that goes! I broke the no caffeine resolution in a matter of minutes, LOL.

Santa was very good to our kids this year and got them a swingset for the backyard, which John and I happily put together for the last 3 days. This thing had about 500 pieces, and John and I guess we forgive Santa for not waving his magic finger (as Bella would say) and making the darn thing appear in our yard on Christmas morning!. It has been a huge hit so far with all of the kids so I guess the hard work was worth it, LOL! Jack has even climbed the ladder all by himself (with me spotting of course!), so I think this will be great PT for him!

The other big gift we got this year was the Wii. This has to be, by far, one of the best purchases Santa has ever made. My girls, John and me have been playing that thing NONSTOP. I got the Wii Fit from my mom, and I'm totally addicted. John is hooked on Shawn White Snowboarding, and my girls, well, they love it all. One of the family games we got for the Wii is Guitar Hero World Tour. This is like Rockband because you have the Guitar, Drums, and the Microphone if you want. We have all been rocking out over the past few days...even Jack has grabbed the microphone and danced his little heart out! Bella and Keeley were rockin' out to Bon Jovi's Livin' on a Prayer today, and Bella, in true Bella form, delivered some great entertainment. Take a peek, LOL.

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A Day of Baking

2008-12-20T20:24:00.000-08:00

I'm definitely not a great cook...I normally cook meals that take the least amount of time, so I can get out of the kitchen as quickly as possible. Today, though, I broke a new record. Bella and I (and sometimes Jack, although he was more interested in eating the ingredients than helping to prepare them!) made three types of Christmas goodies, and I prepared the shish kebobs we're barbequing tomorrow night for the get together at our house. I'm pretty proud of the outcome and especially the fact that I was working in my kitchen from about 10:00-5:00 with one or two breaks in between. Bella had a lot of fun, and hopefully we will keep this up every year...and maybe even move on to more creative goodies than Rice Krispy Wreaths, Peanut Butter Blossoms, and Oreo Balls!

Half of my shish kebobs...those suckers take forever!

Bella with all of the goodies!

Putting the kisses on the PB Blossoms

Jack helping with...err...eating the chocolate!

Jack and His Chipmunk Friends

2008-12-19T21:21:00.000-08:00

I have been a blogging slacker lately, but this post will totally make up for it, and I promise to be a better blogger...especially since all of my shopping is done, I finished reading Twilight, and my boys have been going to sleep without a fight for the past week! It's a happy week here! Anyways, you're about to see the cutest video ever...it stars my little Jack and three little chipmunks (Trust me.) Jack is a lover...no doubt about it. He loves to give hugs and kisses to anyone and everyone...chipmunks are not exempt. See below.

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Bella Funny

2008-12-17T20:18:00.000-08:00

We were out shopping on Saturday...it was a really windy and rainy day, and Bella noticed the tall palm trees swaying in the wind. One particular tree that had obviously lost a lot of fronds, caught her eye. This is how the conversation went.
Bella: That tree doesn't have a lot of branches like the other palm trees do.
Me: No, it sure doesn't. It only has a few.
Bella: Maybe it got a buzz cut.

Ahh, the mind of a child...I haven't laughed that hard in ages! :-) Love my girl!

Buddy Walk 2008

2008-11-05T19:36:00.000-08:00

Here is our latest Buddy Walk Montage! We made it through sickness and rain to come together and celebrate our angel Jack on November 2 at Angel Stadium in Anaheim. As of today, we have raised over $5,200.00! Amazing! Thank you everyone who has supported us...I am always blown away by the generosity of others. Enjoy!

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Halloween Montage 2008

2008-11-05T19:29:00.000-08:00

This is long...but very cute! We had a lot of dressing up this year so there's a lot of pics! :-) Enjoy!

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DSRTF Fundraiser-One Extra Reason to Live.Love.Hope

2008-10-12T20:20:00.000-07:00

John and I were honored to be a part of the third annual Los Angeles fundraiser for DSRTF last night at Twist Restaurant in Hollywood. This is my second time attending (first time for John), and for the second time, I left the fundraiser filled with tremendous hope for Jack's future. For the second time, Dr. Mobley and Dr. Harpold brought me to tears as they spoke from the heart about their life's passion...research that makes it a very real possibility that potential treatments will significantly improve cognition in all individuals with Down syndrome. One year ago, as I sat and listened to Dr. Mobley speak, there had been two potential therapeutic targets identified to improve memory and learning in people with DS. Yesterday, we learned that there have been two more identified, one being in the last three weeks.

What the general public may not know is that most people with DS develop the pathology of Alzheimer's in their 40's. Because of the research funded by DSRTF in the past four years (yes, it is THAT new!), the specific gene associated with the decline on cognition associated with Alzheimer's has been identified (and not just related to Down syndrome...this is related to all who develop Alzheimer's. So why bring this up? Well, apparently, the Federal Government doesn't put any worth or importance on individuals with Down syndrome. In fact, as one example, Federal funding for Cystic Fibrosis (35,000 individuals affected in the US) is about $2,800.00 per person. Federal funding for Down syndrome(350,000 individuals affected in the US) is about $40.00 per person. Anyone else see anything wrong with this picture? I, for one, am saddened by these numbers. My husband, on the other hand, is "pissed off" by these numbers. So what can we do? Well, number one is to take the back door approach...maybe no one in government thinks DS research is important...but they do care about Alzheimer's Disease. Let's get our government officials to realize that funding DS research has a high potential of unlocking the mysteries of Alzheimer's. This benefits all people, including my baby...This seems to be the best way to get more funding...Number two, support DSRTF. This foundation's mission is to improve cognition for individuals with Down syndrome...they call it "the breakthrough." I tend to agree...we have to make this happen...and we will.

I highly recommend looking into DSRTF and all of the great work they are doing for individuals with Down syndrome. I will always have a place in my budget to donate to this worthy organization.

These were the centerpieces...they were old film canisters with pics of kiddos with DS on them...notice my little man Jack making his debut! I don't know if we were allowed to take them...but I did! LOL...I wasn't the only one!

Friends Forever!

2008-10-09T19:52:00.000-07:00

The cutest little things ever...

Seriously...this pic makes me melt...it is the sweetest thing ever!

Hodge Podge...

2008-10-05T20:26:00.000-07:00

Soccer Stuff...Bella scored another goal this weekend! YES! She's getting better and better each week...Now...if we could only get her to stop dancing on the soccer field, LOL! My mom and mother in law came to cheer her on...I tend to yell...ALOT...during the games. I heard my mom say, "Oh no...she's one of *those* moms!" LOL! Yep, and proud of it!

Grant--Started Waving and Clapping this weekend! I think he's saying "Hi!" when he waves! He is sooooo proud of himself!

And for those that haven't heard...Jack got glasses for up close stuff! He is ADORABLE! And, he keeps them on pretty well...shocker! Here is the cutie pie in his new shades!

This is What Happens When Mom is Gone...LOL

2008-10-05T20:08:00.000-07:00

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Raffle to Help Bring Addison Home to Her Family!

2008-09-16T20:30:00.000-07:00

This is a special request...my friend Bethany and her family are in the process of adopting a little girl from Russia. Her name is Addison, and she has Down syndrome. They will be traveling to meet their daughter for the first time on Monday, and hopefully she will be able to come home with them soon after. Adoptions can be very expensive, so The Mom Crowd is having a HUGE raffle to raise funds to help with the enormous costs Bethany's family is faced with.

They have over $1,700 worth of prizes to give away. Each raffle ticket purchased is $5.00 and will enter you into a drawing for all of the great prizes. The last day to buy a ticket is Wednesday, September 24th at midnight EST and the winners will be announced on Friday, September 26th, 2008. For more details and to purchase raffle tickets go to http://www.themomcrowd.com/662.

You can follow Bethany and family's adoption journey at their blog http://www.dreamingonanangel.blogspot.com/

Thanks in advance! This is such a great family...I know they appreciate any help they can get!

This has to be one of the greatest Bella funnies!

2008-09-15T20:12:00.001-07:00

Picture this...4 year old soccer players getting their first experience with sunflower seeds! Lots of spitting, LOL! They thought they were so grown up!On a side note, look how cute our banner turned out!

Latest Montage...

2008-09-11T20:58:00.000-07:00

Our Carlsbad vacation, Bella's first day of school and soccer, and some other random photos and video...Enjoy!

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Bella Funny

2008-09-07T19:54:00.000-07:00

My little Bella was looking at old vacation pictures of me and DH tonight. Here's the conversation:
Bella: Daddy, where am I in these pictures?
DH: Well, you weren't made yet Bella.
Bella: Were they putting me together at the hospital?

She is just too cute! LOVE the mind of a four year old!

Bella Started Soccer Today...

2008-09-06T20:18:00.001-07:00

Hard to believe...but Bella is now old enough to play soccer! Even harder to believe...I am the team mom! Who'd have thought? Today was Bella'a first game with her team "The Tiny Tinks" (as in Tinkerbell...how cute is that?!). Of course the girls will never be missed on the field since we got the choice uniform color of fluorescent green! They all looked absolutely adorable though...so grown up!

So here's what I have to say about today's game: four year olds + soccer = comedy, LOL! It's like everyone running in a huddle one way, then the ball goes out of bounds, and they proceed to run in a huddle the other way. There was also a lot of standing around with looks of "huh?" and "what am I supposed to do?". It was quite amusing!
On a side note, I made my first soccer bow and it turned out super cute! I am NOT a crafty type, but I had fun making the bow...probably because it was so easy. I am going to make them for rest of the girls this week.

A Hodge Podge of Updates Part One..The Boys

2008-08-10T22:20:00.000-07:00

JACK-

Remember when I said that the ENT informed us that the fluid that came out of Jack's ears had the consistency of Jello?! (Double EEEEW!) Well, it must've...because we are almost two months out and guess what?! Jack has gone from about five spoken words (90-100 signs) to over twenty and adding every day! What a difference ear tubes make! Can we say PROUD?! I am sooo proud of my baby. We had the dreaded (not really, but it sounds good, LOL!) 6 month EVALUATIONS last week, and Jack scored at the 20 month level in speech, 22 months in cognition, and....drum roll pleeeeeeease...28 months in social/emotional (He is 28 months old, so no delay there!). Anyhow, the cognition is only 20 something percent delayed, which falls in the normal range. This child works so hard...so so proud!

He has been brushing up on his social skills this summer with a couple of playdates...whatever fear I had about my child never making friends was clearly unfounded! Here's a few of my faves...notice all of the girls!

GRANT-

I can't believe my little guy is 8 months old! He has a contagious laugh, a curious grin, and the ability to keep mommy wrapped tightly around his little finger!!! This is obvious, given the fact that he has wiggled his way into my bed at night! How did I ever let that happen?! Sooo, next step is getting him out! Grant is a little pistol! He would rather just skip the crawling and go right to the standing and walking....although, he has been staying on all fours longer and longer these days! He may just crawl yet! He loves his sisters and cracks up at their mere presence. He has major love for mommy, and he lets everyone know by his piercing screams when I have left the room! Here are a couple of recent pics of my little munchkin!

Buddy Walk Time!

2008-08-10T22:04:00.000-07:00

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Hi all!
I can't believe it's that time again...the 2008 Buddy Walk will be on Sunday, November 2, 2008 at Angel Stadium. As always, our team, Jammin' for Jack, will be raising money for Down syndrome awareness while celebrating the life of our beautiful son. If you want to know what it means to have Down syndrome, please view the short video here OR go check out Jack's website at www.myangeljack.com. If you would like to join our team, donate money, or help with fundraising, you can go to http://buddywalk.kintera.org/dsaoc/clarkfam, or I will also be sending out donation forms in the mail if you prefer to donate that way. We want to thank you in advance for your generosity and support of such a worthy cause.

With much love and gratitude,
the Clark fam

Fun Father's Day

2008-06-17T14:59:00.000-07:00

First things first...Jack is continuing to recover just beautifully. He has slept through the night since Friday, and his last dose of pain meds was yesterday morning. He has been busy eating chicken fingers and quesadillas, along with the occasional scoop of ice cream! (Hey, he might as well get some of the perks of having his tonsils out...even if he doesn't need them!).

So Father's Day...we had already decided to stay put because of Jack's surgery, and Daddy decided that he wanted to wake up, surf (surprise surprise!), get out the waterslide, and barbeque some yummy tri-tip! We invited our friends Ashlee and Todd(and Macy, of course!) over for what turned out to be a gorgeous day! The kids went crazy on our new toy, and Jack was able to sport his new earplugs! You can tell by the pics that this surgery certainly hasn't kept my boy down! All in all, it was a perfect day! Daddy got lots of lovin', homemade cards, and the first three seasons of LOST on DVD...he was a happy daddy!

We are home...a good T & A story?

2008-06-13T14:19:00.000-07:00

I have been nervous about this surgery. Lately, the only T & A stories I've heard have been recovery horror stories...this does not sit well with a mommy who already has a six-month old that keeps her up all night. The prospect of having another child up all night isn't appealing at all! However, Jack NEEDED this surgery so badly so that he can sleep better, feel better, attend better...you get my point. I went in this morning ready for whatever came my way. John and I left our house at 4:15am to get to our check-in time at 5:00am. Jack was groggy and stayed close to daddy while we waited to go in.

When Nana arrived, he started to wake up to get some loves and ended up roaming the halls and flirting with the nurses! What a little ladies man!

He was first in at 6:10, and we all went and waited in the lobby. No sooner had I fed the baby a jar of bananas, they called us in to see the little man! He was done in 20 minutes! Whaaaaaatttttt?! John and I walked back to recovery only to find that our little guy was already awake! The doc was there, and said that it was a success. He said that Jack had a ton of fluid in his ears and the consistency was like jello! Eeeewwwww! Needless to say, he should be hearing A LOT better now! And oh yes, we got a picture. Ever seen Tonsils and Adenoids? Well, you're about to...GROSS! These are Jack's...nice, huh?!

He grabbed onto daddy really quick and pretty much held a death grip...He took a few sips of apple juice right away, and then a few minutes later, the crying started. I knew it couldn't be this easy! We gave him some morphine, but it didn't calm him down. The nurse thought he probably wanted his annoying IV off, so she pulled it out, handed us our discharge papers and off we went! We were home by 8:00! The second we pulled up to the house, Jack got a big smile on his face, and he went inside to watch Elmo, eat pancakes (Yes, I said pancakes!), a banana and milk. He ran around the house all morning acting like he never had surgery. Craziness! He conked out around 1:00 and has been asleep ever since. Now I know it's only the first half of the first morning of recovery, and I don't want to get my hopes up, but I'm pretty optimistic. We'll keep you posted, but right now, I'm proud of my boy for how well he did!

Jack's T & A and Tubes Surgery

2008-06-12T21:11:00.000-07:00

The time has come...Jack will go in to CHOC tomorrow to have his Tonsils and Adenoids out and get tubes. I will update more tomorrow after the surgery, but please, if you are the praying type, say a little one for my boy tomorrow. Thanks a bunch!

E-I-E-I-O

2008-05-23T20:54:00.000-07:00

Too Funny! This is a very short clip of Jack singing his favorite song, LOL!

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A Couple of Bella Funnies...

2008-05-23T20:43:00.000-07:00

She's four, mind you...
I asked Bella what she wanted me to make her for lunch today...she walked right by me into the kitchen with a huffy, "Don't worry, I'll figure it out!"

I was reading her a story before bed the other night, but I got distracted (Who, me?!). After waiting patiently for me to continue, she finally looked at me and said, "Mom, JUST READ!!!" Ahem, alrighty then!

Happy Mother's Day!

2008-05-10T21:15:00.000-07:00

Bella Kisses...they are the best!

Jack - Sleep Apnea

2008-05-06T15:17:00.000-07:00

Jack had a sleep study done at CHOC on April 1st to rule out any sleep disorders that may be affecting his attention span and overall health. It's a crazy process, and rather than explain it, I'll show you a picture.

OK, so about 2 weeks later, we got the results back. Jack had just under 5 hours of sleep, and in that 5 hours, he stopped breathing 16 times for 9 seconds 15 of the times (11 seconds one time). His oxygen levels never went below 95, which isn't good, but it isn't terrible. Before his heart surgery, he hovered in the high 80s/low 90s and that was normal for him. So what that means is that he has significant sleep apnea (No wonder the kid has trouble focusing! Duhhh?!). Our plan of attack is to visit the ENT on Monday to hopefully schedule Tonsils and Adenoids surgery. Hopefully, this will solve the problem, and we can move on. If not, well, I'll cross that bridge when I get to it. I am amazed my boy does as well as he does day in and day out. He is progressing so nicely with such a crappy night's sleep. I know how I am when I don't sleep well, and I can't imagine my level of functioning if I slept like that every night. On an interesting side note, much of the research that is coming out now is saying that many kids are being misdiagnosed with ADD when in reality, they have an undetected sleep disorder. Makes sense!

Santa Ana Zoo

2008-05-06T14:36:00.000-07:00

I have made a realization that if I'm not shuttling kids around to various therapies, school, ballet, etc. during the week, then I am home feeding or cleaning. No fun! I made a decision (and this is HARD for me) not to worry so much about whether or not the house is spotless. I need to spend more fun time with the kids...so we got up this morning and went to the zoo. I cannot tell you how much fun we had! Bella kept saying, "Mama, this has been such a fun day!" Jack was cruising around like he owned the place, and Bella just LOVED everything from riding the train to feeding the goats to sitting on the bench eating our lunch together. I love my kids! I have learned a great lesson, and today, I have filled myself up.

Grant Update-5 1/2 Months Old!

2008-05-04T19:27:00.000-07:00

Poor Grant! Birth order is definitely coming into play with my little man! With Bella, she had Rice Cereal the day she turned 4 months old. Jack had some feeding issues, so we didn't even try until he was 6 months, but Grant...he was probably ready at 4 months...but I wasn't! Thank goodness my little one goes with the flow beacuse this family moves! We finally decided to give him some cereal today, and he was soooo funny trying to eat it. He is really doing so well...he's a little Buddha (almost 18 pounds and 26 1/2 inches), he babbles like crazy, he eats his toes (love that!), and he rolls back to tummy with such ease. Too bad he hates his tummy...ummmm, and mommy is not helping because I just turn him back so he won't fuss! Needless to say, he doesn't go from tummy to back too much (I've only seen him do it twice, and it was on my bed which is squishy.) Anyways, he is such a love! The kids just adore him, and he has a smile and giggle that makes me melt! No one can figure out who he looks like...most think he looks EXACTLY like John(or John's grandpa Clark), but lots of people think he looks like Jack and Bella. I don't know...John and I have similar features anyway, so of course our kids resemble each other too! The only difference I see between G and his sibs is his pale white skin, LOL! I have olive skin, as do J and B, but Grant is a total white boy! He's the cutest thing ever! He has been tagging along with us so much, and he's such a good sport that I think I'm going to sign us up for the mom and me swimming class this summer. All of our kids have zillions of activities, so I figure Grant deserves some Mommy alone time. Yes, I know he's only 5 months old, but still...do you feel my guilt?! OK, here's some great new pics of my little guy! If you know me, leave me a comment on who you think he looks like!

Jack and Macy on the Trampoline!

2008-05-04T14:52:00.000-07:00

Now that he is walking, Jack decided he also knows how to do a somersault. We were hanging out one night, and Bella and Jack were being silly. Bella was doing somersaults across the room, and all of the sudden, Jack stood up and did a perfect somersault...I didn't have the video camera ready at the time because, well, who knew?! A few days later, I got him playing with Macy on the trampoline and showing off his new skills!

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Hot Coupon Mama!

2008-05-03T07:30:00.000-07:00

OK, I have broken down. I have finally admitted to myself that I have a problem. There's no use denying it anymore. I need to be honest with myself. My name is Kristin, and I'm an overspender, LOL! So here's the deal...I spend typically over $1200 a month at the grocery store for my family of six. This includes diapers, formula, and everything else you can get at the store. I am pretty driven, so I decided to challenge myself and cut that DANG bill in half...by couponing and going to Costco (which, believe it or not, I just got a membership to about 2 months ago!). I have also decided that I need to hold myself accountable, so I set up a blog specifically for chronicling the deals I get (Great sales, Freebies, Coupons, Stockpiling, you name it!). Come check it out...Show Me the Money Honey! Oh and P.S., I officially have no life, LOL!

Jack's Bday Montage Plus Some Other Fun Stuff!

2008-04-16T21:38:00.001-07:00

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Ski Bunnies

2008-02-18T21:00:00.000-08:00

For Miss B's birthday, we went up to Snow Valley to snowboard and ski...Bella has been begging us to go, so she finally got her chance. The girls had an all day lesson, while John and I went snowboarding on our own...it was a beautiful day, and the girls had so much fun! They were doing the "french fry feet" to go and "pizza feet" to stop. Here's a couple pics of my cute girls! (and PS...I am happy to report that I did not fall once! :-))

Jack is Standing!

2008-02-12T21:06:00.000-08:00

This was about four weeks ago...he is so proud of himself! This is for you mom!

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Jack and his little bro...

2008-01-26T10:42:00.000-08:00

The cutest thing ever!!!!

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OK, so it took me awhile to update...

2008-01-18T14:12:00.000-08:00

Yikes, it has been two months since I've been on here...it is absolutely amazing to me how much work adding one more child to the mix really is! As I sit here, both of my boys are sleeping and Bella is having some rest time...this has only happened a handful of times since Grant was born! I haven't had a moment to get online it seems in two months. I finally made a recent montage...it has taken me about a month to get it done, but here you have a hodge podge of the last two months...from Grant's birthday to Christmas to Bella's performance to you name it! I realize it's about 7 1/2 minutes long, but if you take the time, I promise there are some cute pics of all of the kids.

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Going in to have the baby tomorrow!

2007-11-19T11:35:00.000-08:00

Excited!!!!!! I'll be induced tomorrow morning at 5am (YIKES!) We'll keep you posted on his arrival!

BUDDY WALK 2007

2007-11-11T12:25:00.000-08:00

We had so much fun! This year we totaled over $4,500.00! So awesome!

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Get it Down: 31 for 21 Day 31 HALLOWEEN MONTAGE

2007-10-31T15:41:00.000-07:00

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Get it Down: 31 for 21 Day 30 Exciting News from DSRTF

2007-10-30T19:14:00.000-07:00

DSRTF Grants $250,000 to Dr. Roger Reeves at Johns Hopkins School of Medicine
DSRTF announces funding for a major new research program led by Dr. Roger Reeves at Johns Hopkins School of Medicine. Dr. Roger Reeves’ recent research discovered that a certain area of the brain, the cerebellum, is underdeveloped in a Down syndrome mouse model, analogous to observations in individuals with Down syndrome. These studies by Dr. Reeves and his colleagues further led to the identification of a potential drug that essentially normalizes the development of the cerebellum in the mouse model.
This new grant from DSRTF significantly extends Dr. Reeves’ research, and includes addressing two critical next questions:
Does the potential drug also correct a deficit in the development of the nerve cells in the hippocampus, a brain area involved in learning and memory?
Does the potential drug produce positive and measurable effects on learning and memory in a Down syndrome mouse model?
“The DSRTF award allows us to pursue our preliminary observations immediately without the now considerable delay that’s usually associated with obtaining federal funding,” says Dr. Reeves. “With a decrease of nearly 70 percent- from $42 to $13 million- in the amount of Down syndrome research dollars from the National Institutes of Health in the last few years the role of groups like DSRTF has become critical to continued progress in the effort to help 350,000 Americans with Down syndrome.”
This new grant adds a third novel potential therapeutic target to the DSRTF-supported research portfolio, which also includes two additional recently discovered potential therapeutic targets currently under investigation at Stanford University School of Medicine. DSRTF’s Scientific Advisory Board unanimously agreed that the new research is intriguing and closely aligns with DSRTF’s mission of accelerating research that will lead to a treatment to improve learning and memory in individuals with Down syndrome.
DSRTF gratefully acknowledges the special gift to DSRTF from Dawn and Roger Kafker making it possible to initiate and establish this exciting new research program. DSRTF also extends its thanks to all of our donors in helping DSRTF to make a significant and rapid impact in Down syndrome research through your financial support of DSRTF. For more information about Dr. Reeves' research, visit our website at www.dsrtf.org

Get it Down: 31 for 21 Day 29

2007-10-29T13:45:00.000-07:00

This is awesome..it says it all...It's called "Thoughtful Language Can Put People First!" One of my biggest pet peeves is when people refer to my son or anyone else with DS as a "Down's kid"or a "Down baby"...oh my goodness, it makes my skin crawl! My son is neither, for he is a person FIRST! DS does NOT define who he is...it is simply one part of who he is. Jack is a child who has Down syndrome...he is not Down syndrome. Here are some exerpts from the article...

Watch your Language
Our goal is to open doors, and keep them open. Here are a few reminders for language usage:

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 qualiies and attributes that can be used to describe them.

Use "people-first" language and encourage others to do the same. For example, refer to the person as a person with Down syndrome," not the "Down syndrome person." A person with Down syndrome is not a "Down's."

Words create lasting impressions. Try not to use cliches when describing an individual with Down syndrome (such as "They're always happy."). 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. Each person has his/her own unique strengths, capabilities, and talents. Recognize that a child is "a child wuith Down syndrome," or that an adult is "an adult with Down syndrome." Children with DS grow into adults with DS; they do not remain eternal children. Adults enjoy activities and companionship with other adults. A 24 year old with DS certainly has 24 years of life experience!

Most people want to use correct language, but even professionals stumble in their attempt. Sharing a few basic reminders will put people at ease and create a positive atmosphere for acceptance of differences.

Get it Down: 31 for 21 Day 28

2007-10-28T14:10:00.000-07:00

Jack's 18 Month Pictures and Bella's School Pictures

My little cheese-ball...look at that smile! :-)

My little man...he's getting so big!

Get it Down: 31 for 21 Day 27

2007-10-27T14:32:00.000-07:00

Today I am going to write down one thing about each of my kids and hubby that I love love love and one thing that makes me laughhhhh!!!

John:

That he puts his family first...I love that!
That he exaggerates everything...he thinks if he misses one day of surfing on the weekend, he'll get love handles....I'm laughing as I wrote that...because it is sooo true!

Bella:

That she will come out of her room after we've put her to bed to say "I love you" again and give us a kiss and a hug...I love that!
That she knows all of the words to Rhianna's "The Umbrella Song" and belts them out in the car...doesn't matter how much I hear it, I always laugh.

Jack:

That he gives lovies on demand! He melts in my chest and bats his eyelashes...I love that!
That his sisters tease him and tickle him and he just laughsssss hysterically every time! His laugh is contagious!

Keeley:

When she gets in the car after school and sees Jack, she gets the biggest grin on her face...I love that she loves him so much!
That when she thinks only her sister is looking, she does the booty dance...it's sooo funny!

I love my family!

Get it Down: 31 for 21 Day 26

2007-10-26T14:22:00.000-07:00

Quick Update Time...Jack had two appointments last week. He had his 6 month cardiologist appointment, and I am pleased to announce that we don't have to go back to that place again for a WHOLE YEAR!!! Yay-Whoooooo! He is doing fantastic. He also had his 18 month well check where he was 26 pounds 4 ounces and 32 inches long...that adds up to the 50th percentile on the regular charts and the 90th percentile on the DS charts. He's a big boy! SOLID, as everyone and their mother keeps telling me! ;-) Bella and Jack both got their flu shots and didn't even flinch...actually, the last time Bella cried while getting a shot was her first shots ever at 2 months old. That's my girl!

Bella had her yearly opthamologist appointment where they tweaked her perscription a tad...we ordered her some new frames which should be in tomorrow or the next day...stay tuned for pics of those because they are CUUUUUUTTTEEE!!

I, of course am on weekly visits to the OB/GYN...I have 3 weeks left until baby Grant comes a callin.' The baby is sitting sideways in my tummy, and according to my OB, I'm not dilated at all...surprise surprise! Looks like this one is following in the footsteps of his sibs...I'll be giving more updates as the due date comes closer.

Get it Down: 31 for 21 Day 25

2007-10-25T17:04:00.000-07:00

Ahhhhh! My laptop crashed to the floor...the damage? A new screen which will cost $500! I'm getting a new one! Soooo, it's put a damper on my blogging because I only have the desktop, which is in the garage. This wouldn't be a problem except that So Cal has been on fire and it's not fun to be outside at the moment! The air quality is atrocious! I hope to catch up on my posts tomorrow!

Get it Down: 31 for 21 Day 24 Wordless Wednesday

2007-10-24T13:39:00.000-07:00

Get it Down: 31 for 21 Day 23

2007-10-23T14:06:00.000-07:00

The "R" Word
by Kathleen T. Riggs PROUD President

Retardation is a word that I have always hated in all of its forms, even before it affected my life so profoundly. It stems from the school yard ridicules that children suffered when I grew up. These taunts were not directed at children with any mental challenge whatsoever, just children who didn't fit in. The bullies even mispronounced the word and I am unable to bring myself to recreate it here all of these ears later. The children with mental challenges and physical challenges were not allowed in typical classrooms when I went through school.
It wasn't until college that I first encountered more than just in passing, a person with some type of challenge. How much I wanted to get to know them better, but I was afraid largely because I never had any contact with anyone "different" while growing up. I didn't know sign language, and felt very inadequate in attempting any type of communication, even a smile. I was taught not to stare, but to look away from someone in a wheelchair and certainly not to have any contact with someone who had a mental challenge. I didn't learn this lesson from my family, but from school mates. It took me awhile to unlearn this horrible practice, and to this day, I sometimes have difficulty when I encounter someone with a challenge. Realizing the difficulty, I hope that makes me more aware and makes me strive harder to overcome.
As enlightened as I have become over the last 7 years, I still have very real trouble with the "R" word. In selecting this topic, I had hoped that my trusty Webster's dictionary would steer me toward the path of making peace with the word and then be able to use it more freely. It hasn't.
I hate it more than ever. It isn't the dictionary definition, it is what Webster added to the definition-the so called slang for (disparaging) that is offensive, characterizing a person who has mental retardation as "stupid, obtuse, or ineffective". This from Webster's 1996 edition!
What brought me to thinking seriously about my aversion to the "R" word was when I volunteered to assist the Knights of Columbus at my church with their annual "Tootsie Roll Drive from Mentally Retarded Children" earlier this year. The Knights of Columbus do wonderful work in many areas and their help with mentally challenged individuals is legendary. Hating the "R" word, I wore my yellow apron willingly, hoping against hope that they will someday get rid of "that word" and replace it with "challenged", becoming more politically correct. As aprons wear out, hopefully they will be replaced with ones that have better wording. It is time (in my opinion) that the word be eliminated completely from use. The ARC (The Association of Retarded Citizens) already no longer uses the "R" word in their literature, and many other organizations have followed their lead.
There are plenty of people out there (maybe even you!) who have no problems with the "R" word. I applaud your ability to use this word freely. I still can't do it. I probably will never be able to get past my own childhood experience, and maybe in this instance that isn't so bad. For now, I refuse to allow the "R" word to be used in connection with our son, or to be written in any reports, including doctor's and IEP reports. Maybe I am overreacting, but as I have said before, we are the people who will change perceptions, and we each have to do our part, however small, to improve the lives of our children. In my opinion, as long as the "R" word is stapled to every move they make, it will be a barrier.
First published in The Optimist (November/December, 1996

Get it Down: 31 for 21 Day Twenty-Two

2007-10-22T18:31:00.000-07:00

Buddy Walk Reminder! We are now less than two weeks away from the Orange County Buddy Walk! To date, we have raised $3.885.00 and will have just about 40 people "Jammin' for Jack!" This is just fantastic!! I want to thank everyone who has donated or will be walking with us...the money raised for this event will go towards enriching the lives of those with Down syndrome...a very worthy cause in my book! If you still want to donate or walk, there is time! Shoot me an e-mail at kristinclark75 at netzero dot net for all of the details! Thanks again! We couldn't do it without you!

Get it Down: 31 for 21 Day Twenty-One

2007-10-21T19:31:00.000-07:00

Our trip to the Pumpkin Patch!

Jack was sleeeeeeeeeeppy...but he was a trooper and took some cute pics with his sisters! The girls had a blast and blew through their ride tickets in no time!

Get it Down: 31 for 21 Day Twenty

2007-10-20T10:57:00.001-07:00

I cannot believe I have actually blogged daily for 20 days! With this one, I am finally ready (well almost!) to share the website I have been making about Jack. It is far from finished, but I feel like it's ready to be shared. I've been working really hard on this, and I hope it can turn out to be a good support for new and expecting parents of kiddos with DS. Check it out and let me know what you think! http://www.myangeljack.com/

Get it Down: 31 for 21 Day Nineteen

2007-10-19T13:12:00.000-07:00

My Dancing Babies...I just love that Jack likes to MOVE just like his sister...I got this video at a stoplight, LOL! cuz they were just too cute!

Photo and video editing at www.OneTrueMedia.com

Get it Down: 31 for 21 Day Eighteen

2007-10-18T12:48:00.000-07:00

Video Update of Jack Crawling...these are short and sweet. He's just getting started with this. Here is the first time he ever got up on all fours and just went!

Photo and video editing at www.OneTrueMedia.com

2007-10-17T20:18:00.000-07:00

Get it Down: 31 for 21 Day Seventeen
Wordless Wednesday: Rock On!!!!!

2007-10-16T18:52:00.000-07:00

Get it Down: 31 for 21 Day Sixteen

On Monday just before bed, Jack started CRAWLING ON ALL FOURS!!!!! I never thought he would do it...he's just too good at the army crawl! But he once again surprised us all! The vieo is coming soon! Stay tuned!

2007-10-15T20:11:00.000-07:00

Get it Down: 31 for 21 Day Fifteen

Holy Crap! I can't believe I'm posting this! I am strongly opposed to preggo pics, LOL!!! But my dear friend Shelbie snuck one in on Saturday...so here's my one and only pregnant shot! Five weeks to go!!!

2007-10-14T18:47:00.000-07:00

Get it Down: 31 for 21 Day Fourteen

I have some pretty amazing girlfriends that I have met through the birth of Jack. Yesterday, they threw me a baby shower...I had soooo much fun! We also had all of our munchkins together which was a perfect opportunity for a group picture...it also took the focus off of taking pics of me and my enormous belly, LOL! Here's a couple of the group...notice that Jack is the ONLY boy, as usual! And HOW HARD is it to get six 18 mo-2 year olds to all sit still and look at the camera! :-)

2007-10-13T19:22:00.000-07:00

Get it Down: 31 for 21 Day Thirteen

Jack has learned how to use my cell phone! Helllllloooooo....is anyone there?

2007-10-12T19:35:00.000-07:00

Get it Down: 31 for 21 Day Twelve

Christina over at Prince Vince Meets the World had this up...I like it so I'm posting it too!

One in every 800- 1000 babies is born with Down syndrome.
Down syndrome is not related to race, nationality, religion or economic status.
Individuals with Down syndrome are people first, with the same rights and needs as everyone else.
Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small and medium sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.
There’s no “S” on Down… it is Down syndrome (not Downs syndrome)
Rather than saying “Down syndrome baby/child” say “A baby/child with Down syndrome. They are people first.
The s on syndrome is not capitalized.
Down syndrome is not an illness. A person either has Down syndrome or they do not. Having Down syndrome does not mean the person is sick.
There are three types of Down syndrome- 1. nondisjunction, 2. mosaicism, 3. translocation
Down syndrome occurs when there are three, rather than the usual two, copies of chromosome 21 in every cell of the body. Instead of 46 chromosomes, a person with Down syndrome has 47.
The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.
People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
Down syndrome happens before conception. There is nothing either of the parents did, or didn’t do, to cause it. It happens when the egg or sperm, is produced with an extra copy of chromosome 21.
Down syndrome is a Trisomy which means there are 3 copies, instead of 2, of any given chromosome. Down syndrome is also known as Trisomy 21 because of the extra 21st chromosome.
It was Dr. Jerome Lejeune that first discovered Down syndrome in 1959, when he found the extra 21st chromosome. Some people give credit to John Langdon Down for discovering Down syndrome but he just first described the common characteristics attributed with Down syndrome.
Common characteristics that people who have Down syndrome may have include single transverse palmar crease (a single instead of a double crease across one or both palms), almond shaped eyes, a larger than normal space between the big and second toes, and white spots on the iris known as Brushfield spots.
Thankfully, due to advances in medical technology, individuals with Down syndrome are living longer than ever before. In 1910, children with Down syndrome were expected to survive to age nine. Now close to 80 percent of adults with Down syndrome reach age 55, and many live even longer.
Down syndrome does not affect the feelings: happiness, sadness, anger, love, and other human feelings are the same for every one with or without bonus chromosome. So is the need for love and care.
Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The degree of mainstreaming is based in the abilities of the individual; but the trend is for full inclusion in the social and educational life of the community.
People with Down syndrome date, socialize and form ongoing relationships. Some are beginning to marry. Just look at Sujeet Desai and Carrie Bergeron!

2007-10-11T19:38:00.000-07:00

Get it Down: 31 for 21 Day 11

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 Physical Therapy 2 times a week. He started at 2 months old.
Jack goes to Group Therapy two times a week for 2 hours. He has OT, PT, Communication, Music, Cognition, and a lot more. He started at 2 months old. I go to this too.
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 defect, Jack has had no other health issues.
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, and cruised at 16 months. Next step is crawling on all fours and walking.
Jack's first sign was "more." Two months later, he was up to 20 signs.
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 girls.
This summer, we went to an Angel game with a lot of people from the Buddy Walk in our section. My husband and I LOVED seeing all the different ages with DS. We were fascinated...didn't even watch the game really...just eavesdropped on everyone's conversations, LOL!
Jack has lots of girlfriends that we frequently get together with for Disneyland or beach days or anything else we can think of.
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.

2007-10-10T15:51:00.000-07:00

Get it Down: 31 for 21 Day Ten

Hee Hee...Jack has finally got the self-feeding down...well, er, sort of! Check out this recent video clip I took this morning!

Make an on-line slide show at www.OneTrueMedia.com

2007-10-09T20:07:00.001-07:00

Get it Down: 31 for 21 Day Nine

Research Initiatives from DSRTF...

Recent Progress
Current Potential Therapeutic Targets
APP in Down Syndrome
To extend their discovery that the over-expression of the specific APP gene, also known to be encoded on human chromosome 21 and associated with the pathology of Alzheimer's disease, is involved in cognitive impairment in a mouse model for Down syndrome (1), recent DSRTF-funded research by Dr. Mobley and his collaborators is progressing to identify additional specific details involved in this impaired molecular mechanism as well as potential drug compounds that will reduce the level of APP expression. Together with Dr. Steven Chu, a Nobel Laureate in physics, Dr. Mobley and their colleagues very recently developed a novel quantum-dot based technique (2) that may provide an approach to further define the APP-mediated impairment as well as a novel method to identify additional potential drug compounds affecting the process. It should be noted that this very interesting mechanistic linkage between Down syndrome and Alzheimer's disease suggests that not only may individuals with Down syndrome potentially benefit from the on-going specific research and development for new Alzheimer's disease drugs, but that individuals with Alzheimer's disease might also potentially benefit from DSRTF-supported Down syndrome research.

GABA-A mediated Inhibition in the Dentate Gyrus
Building on earlier DSRTF-funded research by Dr. Mobley and his collaborators (3), Dr. Garner and his colleagues published exciting research results in April (4) demonstrating that potential drug compounds which inhibit GABA-A receptors, such as pentylenetetrazole (PTZ), dramatically improve cognitive function in a mouse model of Down syndrome. This DSRTF-supported research has advanced the field another promising step toward realizing an effective treatment to improve cognition in individuals with Down syndrome. Dr. Garner and his collaborators are continuing their research to test and evaluate the potential of these compounds for a new treatment strategy and gain further insight to how they produce effects on cognition. Further, since the trisomic gene(s) involved in the specific cognitive processes studied in this research remain unknown, they have also recently published studies (5) suggesting differences in the hippocampal pathology between two different mouse models of Down syndrome that may help narrow the search for such gene(s).

Exploring New Research Directions
Additional recently published DSRTF-funded research addresses the further definition of specific biological mechanisms underlying the cognitive impairment in Down syndrome. Dr. Dan Madison and his collaborators have discovered specific neuronal circuit abnormalities in a distinct area of the hippocampus, the CA3 region, in the Ts65Dn mouse model of Down syndrome which appear to result in "reduced-complexity networks" and may affect memory functions in Down syndrome (6). Interestingly, subsequent research in Dr. Madison's laboratory revealed parallel results relating to cognitive dysfunction in a mouse model for Fragile X syndrome (7). Dr. Mobley and his colleagues also recently reported research studies analyzing genotype-phenotype relationships involving specific synaptic structural and functional alterations linked to cognitive dysfunction in two different mouse models of Down syndrome (8). Importantly, they also continue an intense pursuit to develop a more comprehensive model interrelating each of the identified dysfunctional mechanisms with cognitive impairment in Down syndrome. These studies are providing critical new experimental information that promises to be helpful in identifying additional potential therapeutic targets.

Inaugural DSRTF Scientific Advisory Board (SAB) Meeting
DSRTF established the SAB as an integral element of the Foundation's proactive research strategy, especially in identifying the most promising ideas and research, advising on research resource allocations, and providing expertise and critical perspective on DSRTF-supported research. The SAB members represent a highly distinguished group of scientists and physicians, with expertise encompassing the fields of Down syndrome research, neuroscience, including Alzheimer's disease research, molecular cell physiology and metabolism, genetics/genomics, and drug discovery. During the inaugural SAB meeting in February there was a lively interactive review of the current DSRTF-supported research considered by all to be constructive and productive, and the SAB concluded there had been exceptional research progress as described above. Based on further vigorous discussions among the SAB members, it is clear there are many additional promising research areas, e.g. postnatal neurogenesis, sleep and metabolic dysfunctions and other specific opportunities, with highly significant potential for an even deeper understanding of cognitive impairment in Down syndrome. Accelerating the discovery and development of new therapies can be effectively achieved through parallel pursuit and support of such an increased diversity of research, and key to realizing this goal will be an expansion of research funding to reach a meaningful critical mass, an increasingly important role for DSRTF. As DSRTF develops and implements new research initiatives based on close consultation with the SAB, we look forward to presenting and sharing the Foundation’s continuing progress in future updates.

Numbered Citations; for web links and additional information, see:
1. Neuron 51, 29 (2006);https://owa016.msoutlookonline.net/owa/redir.aspx?URL=http%3a%2f%2fwww.neuron.org%2fcontent%2farticle%2fabstract%3fuid%3dPIIS0896627306004144; and, http://www.dsrtf.org/dsnews-071806.html
2. Proc Natl Acad Sci U S A 104,13666 (2007); www.pnas.org/cgi/content/abstract/104/34/13666
3. J Neurosci. 24, 8153 (2004); www.jneurosci.org/cgi/content/full/24/37/8153
4. Nat Neurosci.10, 411 (2007); https://owa016.msoutlookonline.net/owa/redir.aspx?URL=http%3a%2f%2fwww.nature.com%2fneuro%2fjournal%2fv10%2fn4%2fabs%2fnn1860.html; and, http://www.dsrtf.org/news-022507.htm
5. Neuroscience Letters 421, 137 ( 2007)
6. J Physiol. 579, 53 (2007); http://jp.physoc.org/cgi/content/abstract/579/1/53
7. http://www.dsrtf.org/news-041007.htm
8. J Comp Neurol. 504, 329 (2007); www3.interscience.wiley.com/cgi-bin/abstract/114298666/ABSTRACT

2007-10-08T20:49:00.000-07:00

Get it Down: 31 for 21 Day Eight

U.S. Secretary of Education Margaret Spellings Delivers Remarks at the
2007 Special Olympics Global Policy Summit in Shanghai

FOR RELEASE:
October 3, 2007 Contact: Samara Yudof or Rebecca Neale
(202) 401-1576
Leading a presidential delegation to the 2007 Special Olympics World
Summer Games in Shanghai, China, U.S. Secretary of Education Margaret
Spellings today delivered remarks at the Global Policy Summit on the
Well-Being of People with Intellectual Disabilities. Following are her
prepared remarks:

Thank you, Andrew Williams, for introducing me. It's an honor to be here with you and so many other athletes and supporters of Special Olympics. I'm also honored to be leading a global delegation of so many talented people from the worlds of sports, academia, and business.

I'd like to thank China for hosting this first-ever Global Policy Summit on the Well-Being of Students with Intellectual Disabilities. It's hard to think of a better setting for this event than the Special Olympics.

This morning, I had the honor of meeting the Team USA athletes, including golfer Jason Plante. In addition to competing here today, he is an honor-roll student, and he also plays on his high school golf team, which is among the best in the state. In Jason's opinion, "there is virtually no difference" between learning a sport and learning in school. He's absolutely right. Both take discipline, focus, practice, and high expectations. This summit is a great opportunity for all of us to work together to help more students around the world succeed and thrive as Jason has.

By celebrating the shared joy and mutual respect that sports can foster, Special Olympics have helped people around the world learn to think more in terms of capability than disability. For example, at the first International Games in 1968, many people thought that swimming pools were dangerous places for people with disabilities. So American Red Cross lifeguards stood shoulder to shoulder around the pool to make sure all of the swimmers were safe. But they never had to jump in. All of the 325 athletes in the pool
were perfectly able swimmers.

I think everyone who was there that day probably learned a valuable lesson-don't underestimate what people with disabilities can do. Unfortunately, when it comes to education, it's taken a long time for people in my country to learn that same lesson. For many years, a lot of well-intended people have done a whole lot of standing by the edge of the pool, worrying whether students with disabilities would sink or swim.
In the late 1960s and early 1970s, when Special Olympics was just getting started, most schools in my country closed their doors to young people like the athletes who are competing here in Shanghai. More than a million children in the U.S. were excluded from school because of their disabilities. In many states, families faced the stark choice of keeping children at home or sending them to institutions. As a result, many children with intellectual disabilities lived far from their families in conditions that no person should have to endure. Today, we're still far from perfect. But my country has seen the kind of progress that all of us should strive for and that all of us can achieve. In the last half-century, we in the United States have shifted our national conversation. Instead of asking whether students with disabilities can learn, we are now talking about how to make sure all students achieve. Not in institutions or special facilities, but in their own neighborhood schools, right alongside their peers.

That's a dramatic change in a very short period of time. And we owe much of this progress to people like Eunice Kennedy Shriver, the founder of Special Olympics, who is a longtime champion for people with disabilities.
>
Just last week, President Bush signed an executive order to continue and expand the responsibility of the President's Committee for People with Intellectual Disabilities. Mrs. Shriver and her brother, President John F. Kennedy, were driving forces in creating this committee, and I'm proud to be a member today. I'm also honored to have both Mrs. Shriver and her son, Special Olympics CEO Tim Shriver, with me on President Bush's delegation to this year's summer games.

In 1962, an exhausted mother called Mrs. Shriver on the phone. She said she didn't know what to do. No summer camp would accept her child because of his disability. Mrs. Shriver told her, "You come here a month from today. I'll start my own camp. Just like that, she started a free camp right in her own back yard. That camp for 35 kids has grown into this year's largest sporting event in the world: the Special Olympics International Games.

As you've heard, nearly 7,500 athletes are competing here in Shanghai. Together, they represent more than 2.4 million people who participate in 15,000 events year-round, worldwide.
As Tim Shriver says, from its very first days, Special Olympics has sent out the message that people with disabilities "deserve the right to participate and compete, on the playing field and off." Tim, you've clearly been listening to your mom's good advice! I'm sure you also learned a thing or two from growing up with that camp in your back yard. I learned the same lessons from working at the Handy Andy grocery store when I was growing up, where several of my co-workers had intellectual disabilities. We worked hard, we got a lot done, and we had a great time together in the process.

So, how can we work to make sure that people with disabilities can participate and compete in school, just like in Special Olympics? First of all, policymakers and educators like us must take responsibility for educating every single child, instead of picking and choosing. Second, we must think in terms of inclusion-starting with the assumption that students should learn side by side in the same classroom, whether they have disabilities or not. And finally, in addition to including students with disabilities, we must make sure they're learning, too. In other words, it's not OK to tell some kids they can finger paint while everybody else learns how to read.
"In the United States, two landmark laws have helped us put these ideas into action. The first, now known as the Individuals with Disabilities Education Act, or IDEA, was signed into law by President Gerald Ford in 1975. This law guarantees that students with disabilities have access to a free and appropriate public education. It also requires parents and teachers to develop a customized plan to meet the unique needs of every student in special education, which can mean providing help in the form of speech therapy, a classroom aide, or other kinds of assistance." Research shows that when schools separate students with disabilities from learning alongside their peers, their teachers and even their parents are more likely to see them as "more disabled." But when you put everyone together in the same classroom, both teachers and parents are more likely to see students with disabilities as the capable people that they are. Most importantly, the students themselves are more likely to see themselves for the capable people they are and so are their peers. Want to know what else happens when you put everybody together? Students with and without disabilities both do better in school.

In sports terminology, you might say that thanks to IDEA, students with disabilities can get in the game. But as any athlete can tell you, access to the field will only get you so far. To reach your full potential, you need to have high expectations for yourself. And you need people around you who are dedicated to helping you achieve the highest possible goals. We've all seen many examples of that here at the Special Olympics.

When it comes to education, we can put high expectations into action but not only ensuring every child has access to the classroom, but by making sure every student learns. That's what my country's most recent education law is all about. It's called No Child Left Behind. Families of children with disabilities are among the greatest supporters of this law. Why? First off, it requires schools to measure every child's achievement and to publish results for every student group, including students with disabilities. As a result, educators are focusing on these students more than they ever have before. They are also developing better ways to measure student achievement, and better ways to help every child achieve his or her potential. Most importantly, No Child Left Behind is proving that if we raise our expectations, our children will rise to the challenge.

As my mother used to say, nothing sells like success. In other words, once people see one student with a disability who is succeeding in school, they realize that other kids can achieve the same results. In fact, our latest national report card confirms that No Child Left Behind is making a significant difference for children with disabilities. Results released just last week show that between 2000 and 2007, the percentage of U.S. fourth graders with disabilities who have basic math skills doubled, from 30 to 60 percent. That's 140,000 more kids with fundamental skills! In many cases, students with disabilities are outpacing their peers who do not have disabilities.Now that we're making strong progress in K-12 schools, the next frontier is college. Especially now that higher education is becoming more and more essential for everyone in our global knowledge economy. That's why I'm pleased to announce that my department will provide 1.5 million dollars to create a Technical Assistance Center to help colleges and universities develop and expand programs for students with intellectual disabilities. By collecting and sharing information about effective coursework, supports and services, and community
outreach strategies, the center will help more students enjoy a meaningful and rewarding college education.

Just like Special Olympics, we in education must always seek new adventures and challenges for what we can achieve, and for what our children can achieve. Any athlete here will tell you that is the only way to improve. And every competition here proves just how right they are. Over the last few decades, Special Olympics has started to transform the way people around the world think about what people with disabilities can do. Together, we can work to do the same in education.

Thank you.

2007-10-07T19:28:00.000-07:00

Get it Down: 31 for 21 Day Seven

The love we all have for lil' man Jack is indescribable...the joy that has overflowed into our world with his mere presence is immeasurable. I decided today to post a few of my favorite pics that say it all...is this love or what?

Oh My!

A Daddy's Love

Right before Open Heart Surgery

Right before OHS

Sister Loves

More Sister Loves

Yep, That's my Dad!

2007-10-06T19:29:00.001-07:00

Get it Down: 31 for 21 Day Six

When Jack was born, I had so many questions about what life raising a child with Down syndrome would be like...Well, I am happy to report that life is by far more NORMAL than not...check out my lil' man...all boy and into EVERYTHING! I found him in the dishwasher pulling out the plates and silverware...never a dull moment around this house!

2007-10-05T19:13:00.000-07:00

Get it Down: 31 for 21 Day Five

Oh Boy! Does my little man want to go go go!! Our PT gave us this fun little contraption to help Jack practice walking and crawling on all fours instead of his favorite army crawl...of course I turned the camera sideways AGAIN, but the end result is still my oh so cute boy practicing his walking skills!

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2007-10-04T18:28:00.000-07:00

Get it Down: 31 for 21 Day Four

Time for a short Bella funny. She has now decided that she does not like boys, only girls...so here's our conversation this morning.
B: I don't like boys...ONLY girls.
Me: What about Jack? Jack's a boy.
B: Yeah, I love Jack...he's not a real boy...he's my brother.
Me: What about Daddy? You don't like daddy. He's a boy.
B: I like Daddy...he's not a real boy either. He's a daddy. I don't like REAL boys mom.
Me: Alllllllrighty then...no boys it is! ;-)
I have to say I'm OK with this!

2007-10-03T19:33:00.000-07:00

31 for 21: Get it Down Day Three

Jack update: 18 months old
Thought I would jot down an update on the happenings of the little man and what we're working on at this point...not too shabby...I'm proud of all he has accomplished...proud proud proud!

Cruising along furniture

Taking off and out

Rolling and throwing balls back and forth (also throwing in frustration ;-))

Cause and Effect with pushing buttons (e.g. doorbell on playhouse)

Starting to watch pieces of a DVD (Signing Time) and attending to it

Putting balls in the holes of his dinosaur toy (HUGE!)

Standing from a squat and standing alone for about a second!

Starting...and I really mean just starting, to self feed

Laughing hysterically at his funny sisters, mommy and daddy

Showing he dislikes something by pushing it away

Words: dada, lala (Bella), dada (baby and he signs with that)

Signs: more, eat, please, thank you, all done, train, apple, ball, baby, I want, milk (baba), happy, elephant, cracker, cookie, book, mama, banana, hi, no (shakes head), hat, blows kisses, hugs, claps, waves hi and bye bye, fish , cheese, orange

Songs he signs with: The Wheels on the Bus, Itsy Bitsy Spider, Five Little Ducks, Twinkle Twinkle Little Star, The Elephant Song, Way up High in the Apple Tree

What we are working on: pincer grasp, pointing, self-feeding with a spoon, drinking through a straw, looking at books appropriately, not throwing everything, LOL!, putting in and on with container play and puzzles, Putting in and actually LETTING GO, crawling on all fours (though his army crawl is SUPER FAST!), watching one DVD and attending to it each day, identifying and distinguishing between two animals, fruits, transportation, and people (boy/girl), standing for longer periods of time, rolling cars

2007-10-02T18:48:00.000-07:00

31 for 21: Get it Down Day Two

We're getting down to the wire with baby number four, and as I blogged before, our family of six will not all fit in my Dodge Ram 1500 :-(. I thought I was doomed to be a "mad mom in a mini-van" because let's face it, gas isn't getting any cheaper, we'll be picking up a new car payment where we didn't before, and I don't want to add to our expenses...the mini-van just seemed the only way to go with it's great gas mileage. We had all but picked out the color of our upcoming Honda Odyssey when abruptly on Sunday I got the urge to go look at the Dodge Durango...after all, it is an SUV, but I wanted to make damn sure the gas mileage was horrendous before I totally counted it out. I just can't get into the "mini-van mindset" quite yet! Well, what do ya know...the Durango isn't as bad as my truck (It's not good, but it's not awful!). I took a test drive, and oh yeah, I'm sold!!! I wasn't sure if John would be with me on this idea because as much as I don't want to add to our expenses, he really doesn't want to. Hmmm, how to talk him into it...here's how I did it! We have a 31 foot trailer that we take camping quite frequently. With the demise of our truck comes the demise of our trailer. Our solution would have been to sell the trailer and buy an RV (more $$$$$$$). In talking to the salesperson at Dodge, we found out that the Durango is heavy enough to tow our trailer! Can we say, HALLELUJIAH!!!!!?? SOLD SOLD SOLD!!!! So early next week sometime, I will be the owner of a new Durango. No mad mom in a mini-van (just yet!).

OK, so there was another observation I wanted to make from our car shopping adventure. We had the kids with us...Jack was in his stroller because he is such a wiggle worm. The supervising salesman could not get enough of Jack. He was so drawn to him, giving him high fives, making faces, and imitating silly noises. People love babies, that's for sure, but this was different...it was like Jack had this amazing power to give this man some peace. You could just see it in his face. He was mesmerized. So my comment is this: Isn't it amazing how our angels can draw people to them...they have this presence that is literally overwhelming. I feel it daily, but to see strangers respond in the same way is amazing to me. Angels on earth for sure!

2007-10-01T19:40:00.000-07:00

31 for 21: Get it Down Day One

It's Signing Time with Alex and Leah...Come and Playyyyyyy!

Our TV is up in an armoire...too high to reach for the kiddos...so when Jack was over at his Great Grandma's house where the TV was within arm's reach, he was AMAZED that he could actually touch Rachel...he never sat down. Jack has never liked TV, but he LOVES his Signing Time DVDs...move over Elmo!

2007-09-30T20:11:00.000-07:00

Self-Feeding, LOL!

Oh My!!!! Well, I figure since kiddo number four is seven weeks away, I better start working overtime with Jack on the self feeding issue...ya know, get him more independent before Mr. Grant comes a knockin'. We have been setting aside time every day where I model and guide scooping the Nuk brush in the applesause or yogurt about 10-15 times, then I leave him on his own to "explore" the concept. It's become quite a comedic time of day for me...here's the pictures, and you'll see why! Applesauce in the hair, in every crease in his body, on the floor (covered with towels of course!), in his seat...goodness gracious!!! What a mess! I just have to laugh...

2007-09-30T19:37:00.000-07:00

October is Down Syndrome Awareness month!
Tricia at Unringing the Bell has come up with a great blogging challenge. Get It Down: 31 for 21 is a challenge to create a blog entry each day of October and incorporate Down Syndrome Awareness. I'm a blogging slacker, so what better way to get me back on track than DS Awareness. I can't say I'll be writing about Down Syndrome every day, but you will see an entry every day. Check out Tricia's site to read other blogs participating in the challenge or even better, you can join in yourself!

2007-09-13T06:17:00.000-07:00

Dear Friends and Family,

I hope this fall finds you relaxed and in good spirits! We are having a busy time getting ready for our newest Clark addition, Grant! I am writing you today because it is THAT time again! The 2007 Buddy Walk is right around the corner! As you all know, our 17 month old son Jack was diagnosed with Down syndrome at 2 weeks old. He is one of the most amazing children I have ever laid my eyes on (I know, I’m biased! :-)). In his short life, he has profoundly changed the hearts and minds of many with his unforgettable presence, the sparkle in his big brown eyes, and his sweet smile. In recent years, great strides have been made to improve the lives of our kids. This has only happened through years of research, and as a family, we are compelled to help continue this research by supporting the many organizations who have committed to bettering the lives of all people with Down Syndrome.

A wonderful way to help or otherwise become involved in Down syndrome-related charities is participation in the Buddy Walk. The Down Syndrome Association of Orange County (DSAOC) is having their 13th annual "Buddy Walk" at Angel Stadium on Sunday, November 4, 2007. The DSAOC is an organization that is committed to being the leader in enhancing the quality of life, and realizing the potential of all people with Down Syndrome. The Buddy Walk is designed to promote awareness and inclusion for people with Down Syndrome, as well as to raise money to support education, research and advocacy initiatives. Needless to say, it promotes a cause that is close to our hearts.

As stated above, the Orange County Buddy Walk will take place at Angel Stadium in Anaheim on Sunday, November 4, 2007. We will have a team there, “Jammin’ for Jack.” Last year, our team raised almost $8,000.00 and had over 40 people on our team walking for Jack! We hope to surpass both of those numbers this year and hope to get as many people out there raising awareness for Down syndrome and celebrating the life of Jack as possible! Even if you can’t walk long distances (I may be in that boat with you as I’ll be 9 months pregnant!), your presence speaks volumes! You don’t even have to walk…just celebrate with us!

Registration will begin at 9 a.m. with the walk kick-off at 11:00 a.m. The Buddy Walk is about a mile long (strollers and wagons are permitted) and it will be followed with Lunch from 11:30am-12:30pm and Fun on the Field from 10am-2pm. This is a family friendly event! The actual walk is only a small part of this event. If you were there last year, you know how incredible a day it is! I will be MUCH more organized since I know what to expect! We’ll have breakfast and we’ll be there early for a prime spot on the field! ;-)

We would love as many of you as possible to partake -- but we do not mean to pressure anyone and do not want anyone to feel compelled. We recognize how busy everyone is, however, we just wanted to let you all know about the event and thought it might be a great opportunity to get together with some family and friends. We are committed to raising awareness about Down syndrome as well as educating folks that a complete and happy life is possible for people with disabilities. Last year, nationwide, the Buddy Walk raised over $5 million dollars. We hope to help this year by raising at least $10,000.00 as a team. If you cannot walk, please consider making a donation to our team. Each donation is a tax-deduction and you will be supporting a great cause. We have enclosed a self-addressed stamped envelope for your convenience if you would like to make a donation or join the team. All checks should be made out to: DSAOC, OR if you would like to donate online go to the following link: http://buddywalk.kintera.org/dsaoc/jackclark (for individual donations) OR http://buddywalk.kintera.org/dsaoc/jamminforjack (to join the team)
Please let us know if you intend to participate and please pass this note along to anyone who might be interested or to anyone that I might have omitted.

Hoping to see you all on the 4th. Thank you in advance for your support and generosity.
With warmest regards,

John, Kristin, Keeley, Bella, and Jack (and soon to be Grant) Clark

2007-09-05T21:14:00.000-07:00

Bella started school today in her brand new Hello Kitty shoes. She was so proud of them and had to show them off to everyone at school. Here she is when I dropped her off this afternoon...

2007-09-05T14:27:00.000-07:00

Last Tuesday, I went to a fundraiser at the Hollywood Bowl for the Down Syndrome Research and Treatment Foundation with my friends and fellow moms Dianne, Ashlee and Heather. The news was there and did a piece on the event...here it is...http://cbs2.com/video/?id=46957@kcbs.dayport.com. They pan to my table for about a half second where my back is facing the camera, and Jack's little wallet pic (only I would know it was him, LOL!) is shown twice on the frame table. It was a good night to get out with friends and support a very good cause...well worth it!

2007-08-17T11:09:00.000-07:00

Today I am Grateful For...
I've been tagged by Stephanie over at Megan's Got 47...the task: three things I am grateful for. It took me all day yesterday to narrow this down to only three as I am grateful for so much, but here goes...
1. Yesterday was my 4th wedding anniversary, so I think it is fitting to say I am grateful for my husband John. I really found a good one in that one I tell ya! I could go on and on about him, but really, he is a wonderful provider for our family, works his a$$ off every day so that I can stay home 90% of the time with our kids, and he's an amazing father who adores his children with everything he has. As for me, I am grateful for my kiss goodbye every morning and my kiss hello the second he enters the door...I am grateful that I hear the words "I love you" every day. It may seem little, but that kiss in the morning is enough to put a smile on my face all day...for that I am grateful.
2. Yesterday was also Jack's closing ceremonies for the summer program at ICEC. They had an "Olympics" theme with gold medals (Jack's was for gymnastics...boy that kid likes to move!), pretend fireworks, a torch parade, and T-shirts...it was adorable! This leads me t number two. I am so grateful for Jack's therapists: Donna, our in home PT, is an absolute Godsend...we just love everything she does for Jack, and I don't know what I would do without her. I'm also grateful for all of the therapists and staff at ICEC; Letty, Rondele, Rachael, Lisa, Celeste, Amy, Jeannie, Kathie, Pam, Lupe...for all of their knowledge and care for our children, I am grateful.

Jack waving his torch at the "Olympics"

3.Last, but certainly not least, I am grateful for all of the angels and their parents I have been blessed to know and fall in love with this past year. Never in my wildest dreams did I think there was a love like this that existed...I love my husband, my children, my mom and dad, brother, etc..with an unconditional love that goes very deep, but the love these children have brought into my life is different. It's unmeasureable and amazing...I am so grateful that I have that.

One of Jack's Many Girlfriends...One of the sweetest angels ever, Miss Macy

It is now my turn to tag three people...so Bethany over at "Life with Bubba and Chicky," my girl Shelbie at "Maddi's Site," and Renee at "The Parker Family," you're it!

2007-08-12T19:22:00.000-07:00

Itsy Bitsy Spider...The Wheels on the Bus...Twinkle Twinkle Little Star...The Elephant Song...these are some of the many songs we sing at Jack's group therapy at ICEC. We also sing them at home, along with a slew of others. Along with each song, there are hand gestures. Jack has been doing the Itsy Bitsy Spider for about a month now, and slowly he has been experimenting with the others. Well tonight, I had a truly endearing moment. Just before bed, my girls and I sat with Jack for some singing. He imitated EVERY SINGLE SONG with gestures...every one! Each time we finished, he'd turn around and look at his daddy with a look of satisfaction and giggle like there was no tomorrow...so proud of himself! My girls cheered their little buddy on the entire time...I just kept thinking to myself, with my family all sitting together enjoying this small, but monumental moment, that it doesn't get any better than this right here...and it doesn't. We are blessed.

2007-08-08T08:45:00.000-07:00

Thanks to everyone for your advice and prayers. After sleeping on it, I have decided not to have an amnio. I really never wanted to go that route, but that perinatologist just got my head spinning! I really feel at peace and know that whatever is meant to be will be, and I'm OK with that...I go into these last three months very comfortable with the L2 Ultrasound and Echo results. Thanks again to all who helped me with this one! ~k

2007-08-06T19:29:00.000-07:00

Today we had our follow-up fetal echo cardiogram at UCI. I'm not sure why, but last night I was filled with anxiety about it...and it continued until we were done this morning. To update on the background, we asked for a fetal echo because of Jack's heart defect. We just wanted to be as prepared as possible if something was wrong...so three weeks ago, we did our L2 Ultrasound and fetal echo. After five perinatologists searched, they weren't sure for the longest time if they saw a VSD or if it was a shadow. After moving me to my side, they finally agreed that there was nothing there...it looked fine....BUT, please come back in 3-4 weeks for a follow-up when the baby is a little bigger. Fast forward to today. New perinatologist...thorough as could be...her colleague walked in for part of it and told me she didn't think a heart had ever been analyzed that thoroughly...and the end result was that she saw nothing and is 100% sure that there is no major heart defect. This, you would think, would make me feel better, and it does, somewhat...BUT, I constantly have all of the mistakes made while I was pregnant with Jack running through the back of my mind, and it makes me anxious. SO, I have two choices: Accept that which I have no control over and enjoy the rest of my pregnancy OR get the amnio to know for sure and have peace of mind, one way or another, for a more relaxed third trimester...decisions,decisions...

2007-08-04T19:45:00.000-07:00

I got Jack doing some signing on my camera today...in the past two weeks, he has really started applying what we have been doing with him since he was a newborn! As of now, Jack knows these signs: more (his first sign), I want, eat, all done, mama, ball, milk, and all of the gestures to Itsy Bitsy Spider (and he is waving and clapping). I feel like things are clicking for him all of the sudden...the expressive is catching up to the receptive...so here he is!
Edited to add: He just added please and happy to his signs. :-)

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2007-07-28T16:31:00.000-07:00

Rock out! Here's a couple of clips of the kids (John included!) singing and dancing their little hearts out on our camping trip last weekend! They are really short because they're from my camera, but super cute!

Photo and video editing at www.OneTrueMedia.com

2007-07-28T16:25:00.000-07:00

Here's my summer sweethearts...pics of the summer so far! Good Times!

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2007-07-26T14:09:00.000-07:00

I don't know what I did to her, but today Bella came up to me and said, "Mama, you're making me nuts!" LOL!

2007-07-25T20:01:00.001-07:00

Here's a little clip of my Jack doing something he loves...saying NO to his mama, LOL!

2007-07-25T15:11:00.000-07:00

Happy Campers!

Last weekend we went camping at Bolsa Chica for three days...John attempted to take the girls out and push them on his surfboard. Two death grips later and they were back on the sand, LOL! I guess it was a little too soon for that! Jack enjoyed the sand immensely and proved his love by licking it every chance he got...yuck! John got in a little surfing and I got to take a looooonnnnng nap, which was much needed! Next weekend we'll be taking the trailer down south to Silver Strand State Beach in Coronado. Stay tuned...