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

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

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

31 for 21: A Little Taste of ABA

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

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31 for 21: People First Language

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

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

31 for 21: 21 Things about Jack and Down syndrome

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

• We didn't find out Jack had DS until he was two weeks old when a very observant pediatrician questioned the shape of his eyes.
• Jack was born on time with no complications. We went home after 2 days.
• My Ultrasound did not pick up Jack's AV Canal Heart Defect, a defect specific to DS.
• Jack had Open Heart Surgery to repair his AV Canal at 8 months old.
• When I was pregnant with Jack, my AFP Quad Screen came back negative.
• Jack has ABA (Behavior Therapy) 12 hours week to address certain behaviors that make it difficult to function in the real world...it's the real deal...it is WORKING!
• Jack goes to a Special Day Class (Special Ed.) from preschool. Next year, we are looking for full inclusion.
• Our team Jammin' for Jack raises money and walks in our local Buddy Walk with many of our family and friends.
• I have met some of the most amazing moms and their children...all because I had Jack.
• It took my husband and I about a week to grieve the diagnosis once we found out...then we were moving forward.
• I found DownSyn when I was researching everything and anything I could find about DS while we were waiting for the test results to come back.
• I got pregnant with Jack when I was 30.
• Other than his heart surgery, Jack has had his Tonsil and Adenoids out and ear tubs in.
• Jack rolled over at 6 weeks, sat up one week after heart surgery at 8 months, army crawled at 12 months, pulled to a stand at 14 months, cruised at 16 months, and walked at 24 months. He hasn't slowed down since, LOL!
• Jack's first sign was "more." Two months later, he was up to 20 signs. At three, he was at over 100 signs. Now, at 4 1/2, he uses 3 and 4 word sentences.
• Raising Jack is more normal than not.
• Jack has non-disjunction Trisomy 21.
• I have found that I am soooooo excited at every milestone Jack meets. Our family celebrates the things we have always taken for granted with our other kiddos.
• Jack loves music and dancing...his favorite songs are "On Top of Spaghetti," "Mickey Mouse Clubhouse Hot Dog Dance," and "California Gurls" by Katy Perry, LOL.
• Jack has lots of girlfriends. His best friend is Macy. They are two weeks apart in age, and they WILL get married, LOL.
• Our days are richer because we were blessed with our son Jack, who just so happens to have an extra chromosome. He has changed the hearts and minds of many.

The Case for Full Inclusion Continued...

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

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

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

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

31 for 21: Day 2

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

Trisomy 21 or T21: Another name for Down syndrome…Jack has three 21^st chromosomes instead of the typical two. He has a total of 47 chromosomes instead of 46.

ASD/VSD/AV Canal Repair: Some of the different heart defects common on people with Down syndrome. 50% of people with Down syndrome have some type of heart defect. Some only require monitoring by a cardiologist, while others will need to have surgery to repair the defect. At 8 months old, Jack had Open Heart Surgery at Children’s Hospital Los Angeles to repair a complete AV Canal. He will most likely have to have another surgery in the future. Although the AV Canal was repaired, scar tissue called a subaortic membrane has formed and is blocking some of the blood flow. Every year at the cardiologist, I hold my breath for the words…”Time for surgery.” Luckily, we were just cleared for another year. J

ABA: Applied Behavior Analysis Therapy-This therapy is commonly misrepresented as a strategy used for kids with Autism. In reality, it is a great therapy for anyone who has behaviors that need to be tweaked in order to function appropriately in society. Jack has an amazing team working very hard to turn some of his inappropriate behaviors around. I will be devoting a couple of blog posts to ABA this month.

IEP: Individualized Education Plan-This is a legal document outlining Jack’s school placement and goals for the year. We meet at least once a year with the IEP team to determine the least restrictive environment for Jack’s individual needs. Next year, Jack will be transitioning to Kindergarten, and we want full inclusion. I am going to have to bring in a ton of research backing the benefits of full inclusion for kids with Down syndrome. If we do get this, it will be groundbreaking in our district.

PT/OT/ST/APE: Abbreviations for some of the many therapies Jack receives or has received to narrow the developmental gap. Physical Therapy, Occupational Therapy, Speech Therapy, Adapted PE. We have spent countless hours with many different therapists…I don’t know what I would have done without these ladies. I cannot praise them enough…the difference it has made in his development is immeasurable. So thank you especially to Donna, Caroline, Lindsay, Diana and Amanda! You all have such a huge piece of my heart. J

Full Inclusion: If Jack were to be in a typical Kindergarten class next year instead of a Special Education class, he would be fully included.

SDC: Special Day Class-This is Special Ed. In my district, starting in Kindergarten, there is a mild to moderate class and a moderate to severe class. The range is Kinder-2^nd in one class and 3^rd grade-5^th grade in another. When I say Mild/Moderate/Severe, I am talking about the developmental delays.

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

31 for 21!

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

Grab This Button

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

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

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…