Last Day of 31 for 21: Halloween with a little blast to the past

Sadie- Minnie Mouse 2010

Early Intervention 2004 Sadie's first Halloween! She is the fourth one on the top of the couch (a black kitty)

Right Before School

Sadie and her friend Kyle. He is so sweet! He even touches her back and makes sure she gets into the door of the class.

Sadie with her class signing a Halloween Song.
The Halloween Parade. This is the only time she wasn't waving and kissing the audience. She thought it was her parade.
Her Kindergarten Class
Gavin and Sadie before the Halloween Party. Just minutes before she hid from us for 10 or 15 of the most scary minutes of my life. Gavin has been home with his forever family from Russia for 2 years. Sadie and Dad (Kip) being interviewed during the Halloween Parade at Church. When the microphone was put in her face she said, "My name is Sadie and I Minnie Mouse for the Halloween time." Awesome, clear, and greatly appreciated by many!
Sadie after giving me a high five and yelling, "I did it!" She was proud of herself. Minnie Mouse (Sadie), Tweedle Dee (Hannah), and Tweedle Dum (Selina)

"It's gonna bite me!"

I just found Sadie in the backyard belting the words to "Get'cha Head in the Game" and almost stepped on a rainy day treat.

Me: "Hey Sadie, look at this long worm."

Sadie: "Ughhhhhh! A snail... it's gonna to bite me" (running and hiding behind the swing)

Me: "It's not a snail it's a worm. Worms eat dirt not little girls. They don't bite Sadie's"

Sadie, "Oh, cool!"

Then she proceeded with an reenactment of High School Musical with the worm as her audience :)

The worm said, "The show warmed it's HEARTS!" sorry... I'm super tired and goofy! :)

Girls Goofing Around With The Webcam

Hannah, Madison, and Sadie

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I Want To Share This With You Again...

Originally posted in August of 2008. I'm sorry but I have to share this every year :)

I've been thinking a lot of an experience I had just after the birth of Sadie. Three of my friends came to visit me in the hospital. They all sat at the end of my bed admiring Sadie and looking forward to the births of two of their children in the following few weeks. I felt the time was right and I just blurted out, "She has Down Syndrome". What happened next has been one of the best lessons I have ever experienced.

My friend Kay, who had 3 children and was expecting her 4 in the next two weeks and who grew up with two deaf parents, exclaimed, "Oh, she's so cute... doesn't she have the cutest toes? It looks like she is giving us a peace sign, " (because of the big gap). She just kept talking and talking about everything... I wondered if she had even heard the news I had just given her.

My friend Alison, who was expecting her first child the next month, sat there with a with a deer caught in headlights look. I don't think she said another word and I was sure she was lost in thoughts of, "if Kari didn't know she was going to have a kid with ds... what about ME?"

And then there was my sweet little friend Ayumi she sat there with tears in her eyes, got up and hugged me and started asking questions about what was next and about her health.

Everyone had a different reaction. I believe those reactions were all born from different experiences they had in life. Each had different upbringings and and different personalities. All three were there in the room with me at the same time hearing the same things; but, each of them heard it differently. Kay lived around disabled people all her life. She knew that things would be just fine. She was there to celebrate a new life. Alison was newly married, expecting her first child. They were perfect and nothing seriously life altering had ever happened to her. Ayumi, she grew up in Japan. She grew up in a society where people with disabilities are hidden, killed or shipped away.

I learned that day that I could never control how others reacted. I needed to look beyond their reaction and wonder... why do they think that way? Now today, when we are out and about, I often see how people react to Sadie. Sometimes they turn their heads. Sometimes they look at me with pity. But most of the time, they smile. They see how happy we are. They see the joy and love Sadie brings to our family.

I can't control how others feel. The only thing I can control is my own thoughts and emotions. I can however, hope that maybe as we fully accept and rejoice in our little ones others will see their beauty and worth. And if not- it won't change how I feel one bit!!!

Worldless Wednesday

Sadie and Jake- Don't let this fool you,

Sadie is always up for a hug and kiss!

Crazy Swimmer!

Sadie loves the pool. Actually, she is quite a crazy swimmer and enjoys spending lots of time in the deep end... which drives me nuts!! She has graduated from floaties and boobies to just "boobies" (what she calls the floatation vest). I love this picture because you can see all her freckles :)

21 Things I Love About Sadie

I LOVE...

1. listening to her "sing" about her day on the way home from school.

2. her dance moves and how she remembers every dance she has ever seen her sisters perform.

3. how she knows almost every radio Disney song and is able to identify it within the first few seconds.

4. that her response to why? is "BECAUSE I love it!"

5. that even though she has some serious ninja skills, she will crawl up in bed with me.

6. she is very compassionate and will hug and kiss someone when they are crying.

7. that she hangs out with most of the boys at school because she thinks they are "funny".

8. that she loves to read books.

9. how sassy she is! Even when that means she tells me "whatever woman" or uses all the signs on her forehead to call me a "Major Loser".

10. that she thinks Nick Jonas, Chad Dillon Cooper, and "boy" are her boyfriends.

11. she plays "teacher" and "school" with her imaginary friends and asks them "what is your name?", tells them "good job", and to "shut it".

12. her freckles on her nose, cheeks, and eyelid.

13. how she walks through the "kindergarten pickup traffic" and never notices everyone staring at her. (mostly cause she soooo cute)

14. she loves to pray!

15. she tells me "this is the best dinner ever" almost every night.

16. she thinks she is a teenager and that all her sisters friends are actually her friends.

17. her soft skin, extra skin on her neck, and the wide gap between her toes.

18. that she has wanted to be Tinkerbell or the purple fairy for the last three Halloweens.

19. her giggle... how it sounds like snoopy and comes from her gut.

20. how her pants fall just below her butt crack.

21. the twinkle in her eyes and how she dives into my arms to hug me and tell me she loves me.

Oh there are soooo many more! And I am sure the list would be different if I did it in a week. I love my Sadie sooo much! Leave a comment and let me know some of the things you love about your little one. You can also tell me what you love about Sadie!

Sadie, Some Dolls, and Lady Gaga!

Who do you see when you look at this picture? Sadie sees Lady Gaga, Annie (Madison & Hannah's friend), a Boy, and Thea (Madison's friend). I'm really scared my 6 year old knows who Lady Gaga is and can sing you several of her songs. But, I can't blame her.... that doll really does look like Lady Gaga.

A glimpse in Sadie's imaginary world

I've been trying to work on a post about "the 21 things I love most about Sadie". The strange thing is the longer she is with our family the harder this gets. I may have to change it to the "100 things I love most about Sadie".

So, until I can shorten my list I thought I would share how I got Sadie to school the other day. I remember when Sadie was first born I heard that kids with ds don't have a good imagination. I must have heard wrong; because most kids I know have a great imagination. Infact, lately Sadie spends most of her time outside of school in her "imgaination". A lot of her play is based on things she has seen or heard; but whose isn't? So, I will take you back a few days and demonstrate why Disney Channel will be closely monitored from this point forward.

Me: "Sadie, time to go to school"

Sadie: "Zack, Cody, London I told you not now"

Me: "Sadie, don't you want to play on the monkey bars? You are going to be too late to play."

Sadie: "I have to find my hat and talk to London"

Me: "huh?"

Sadie: "Cody, I don't want to"

Me: "Who are you?"

Sadie: "I Bailey... I TOLD you that!"

Me: "Oh," I finally realized we are playing Suite Life with Zack and Cody, "so, Bailey- Mr. Moseby needs you to get to the boat before he leaves. He wants you to hurry."

Sadie: "Ok... let me get my hat, pants, and panties" This is where she puts these imaginary items on- in that order.

Sadie: "Ready, let's go. We be late for Mosbey, Zack."

Later that day she spent the whole afternoon yelling "Sienna" which I hear is Hannah Montana's brother, Jackson's, girlfriend he misses sooo much. Oh, and there is the "Father, Father" said in an English accent that Tinkerbell's friend yells before we must hoist Sadie in the air to fly like the fairy. So many more... I'll save them for facebook, or if your lucky, maybe I will share with you!

D is for Down Syndrome

This video was made a couple of years ago by an online friend Renee Garcia at "Life with My Special K's". Sadie is in the video twice... can you guess where? I had so much fun looking at this video again and rememebering how little all our friends were and enjoying how much they have grown.

Enjoy! Thanks Renee :)

Looks like I need to find a new format for the video. If you can't see it all on my blog please visit Renee's blog. It's worth the extra click!

http://www.myspecialks.com/2010/10/d-is-for-down-syndrome.html

Photo and video editing at www.OneTrueMedia.com

Kinda Wordless Wednesday...

Who am I kidding? Of course I will write something :)

Sorry this is a bad picture; but most pictures are from a mobile phone nowadays. This picture was taken by my friend's daughter after riding Buzz Lightyear with Sadie. They thought is was sooo cute that she stopped and asked for them to take a picture of her in front of the scoreboard.

Yeah, it's cute the first dozen times... just sayin'!!

Parent/Student/Teacher Conference

We had our first conference since Sadie has been fully included. Last year her mainstreaming teacher, who is now her full time teacher, was less than excited or positive about Sadie being in her class. She only allowed her in class during "playtime" and would ask me to pick her up early if the scheduled changed and it interfered with that "playtime". I learned very quickly that her teacher did not understand mainstreaming or inclusion and was not on board. Some of her comments made me think she believed kids with Down Syndrome were unable to learn. Sadie is super verbal and has a huge vocabulary; but she is an observer. I love our ride home because she tells me everything that happened that day. Mrs. H hadn't heard her talk much and told me one time, "She was turning the pages to the book and she said apple!" Wow... seriously???

Anyway, I was worried when she showed up to Sadie's IEP believing that Sadie would be placed in her class this year. I know that ignorance needs to be educated and that by positive examples in our community negative stereotypes of people with down syndrome will be shattered. But, did I want to put my kid in a place where she would be responsible for changing the minds of so many that didn't believe in inclusion?

I remember during one of our Learning Program sessions Dana Halle said, "The most important thing to me when including my child is making sure the teacher wants my kid in her class. The best way to find out is to ask." So, that's what I did. I looked Mrs. H in the eyes and said, "all these plans are great; but, are YOU going to be HAPPY to see Sadie EVERYDAY? All I want to know is that she is wanted in your class." She didn't look offended and responded positively. I had my doubts.

I was worried for nothing. Mrs. H and Ms. A (her aide) are happy everyday to see her. They are genuine and kind and positive. Infact, while leaving the conference the resource teacher said, "I am really excited about this year. Sadie is doing terrific and you made the right choice to have her repeat kindergarten. Everyone is so proud of her. Inclusion works when everyone is on board. A world of difference from last year!" That about sums it up.

During the conference (and throughout the year when picking her up) her teacher gushed about how well Sadie is doing. Infact, there were times when I felt bad because I wasn't as excited as she was about Sadie. I think it is because I know what Sadie can do.... but, I will let Mrs. H think it is the inclusion that is working so well. Anyway, Sadie read us a book and showed us all her sounds and letters. Mostly they were excited for her endurance, focus, and ability to stay on task and do the work. There is some modifying happening (mostly fine motor). I'm cool with that. I want her to learn and be successful. Even if she wasn't doing the same work as her peers- she is happy to be with all the kids!

Sadie rocks and I'm happy with her placement this year. The only thing I don't like... all the crazy "tricks" she has learned on the monkey bars. Glad I don't have to see that everyday :)

Educational Options

Because of the miscarriage I haven't been able to blog 31 for 21 like I promised. The rest of the month will be spent trying to make up for that!

Twenty years ago educational options for kids with down syndrome were slim. Special schools or Special Education Classes were pretty much your only placement choices. Today, research shows that mainstreaming (partial day in a typical class) or inclusion (majority of the day in a typical class with some support) can be beneficial for some of our kids. I will try to find a link of a previous post all about the research done in the UK about inclusion. Briefly, it says that if a child is fully included they test 2 to 3 years higher than a child in SDC. In the UK 70% of all kids are included. In the US less than 10% are included. Educational plans are very personal and there is some pressure in the down syndrome community. Some over eager parents want everyone of our kids included to "prove" to the world our kids are capable. Considering I have homeschooled all of my kids at different times and for different reasons, I feel confident you will believe me when I say each kid has different strengths and weaknesses. They have different needs and different comfort levels. So, placement should be the environment that helps your child thrive and NO ONE should judge a child's potential or a parent's dedication because of their choice.

I have seen high functioning kids, who are academically strong, placed in SDC (special day classes) because of sensory issues. They thrive! I have seen moderate functioning kids placed in typical classrooms thrive because of social interaction. Sadie's first year of school we placed her in SDC Kindergarten because she was young, sick and we felt like typical kindergarten was a stretch but she was beyond preschool. This year, more mature and healthier, she is fully included with 25 mins a day pull out in a resource class to help modify her curriculum. Next year??? Depends on what is best for Sadie. Get the point?

Another important point is that every child with down syndrome is mentally retarded or developmentally delayed. Most kids with ds are tested within mild to moderate delays. A lot of parents don't like the "R" word... I don't like it to much if it is used as a word to describe what my child can not do. Medically and academically, it is true. This was a hard concept for me- probably the hardest in our journey with Sadie. It doesn't mean she can not learn--- just means she learns differently and at a different pace. I notice this most when she is mastering something new. It seems like she learns in steps and each step is obvious- unlike my older children that seemed to learn something over night. It actually helps you savor her accomplishments and gives us an understanding of how hard she works.

Even though Sadie is developmentally delayed (or MR) she has been tested within a normal IQ range. Reality is, she needs help. She learns differently, things are processed differently, her rate of learning is different; BUT, she learns! She is one smart cookie :) Next post will be about our first parent/child/teacher conference as a fully included student...

I Would Take This Journey Again... If I Had the Choice!

6 1/2 years ago when Sadie was born there were tears; but the tears weren't so much for grieving the "perfect child" we lost. They were tears of fear. Of not knowing how her disability would affect our family. Tears that I wouldn't be able to parent a child with special needs along with the three I already had. I was scared about the couple of dozen "possible" medical issues we needed to rule out and worried about how to homeschool and attend all the therapy and Dr. visits.

I guess I never really allowed myself to focus on what we lost. It could have to do with our religious belief that Sadie is exactly who she is suppose to be and that Heavenly Father loves her. We also believe that in the pre-existence Sadie fought hard during the war in Heaven before Satan and his 1/3 were cast out. It is believed that Sadie was a valiant warrior who has been blessed by Heavenly Father to still come to earth and gain a body and a family; but because of the Down Syndrome she will be shielded from Satan and his cunning ways. Therefore, she is blessed with protection here on earth and will be restored to 'perfection' in eternity.

Several weeks ago I posted a facebook status saying something along the lines of how I guess I should just face the fact that I shouldn't have anymore babies since I had my hands full and one graduating HS this year. I was surprised to hear some say I had too many kids (in a very nice, based on religious views and upringing way). I made the joke that if I only had two I would have missed out on Hannah and Sadie... that would be sooo sad. Not only would I have missed out on two of the most colorful, fun-loving, entertaining, and full of life kids; but I would have missed out on Down Syndrome, the down syndrome community, and what living with a child with ds has done FOR our family. Noticed how I said FOR and not TO? I think you get the picture :)

Anyway, today I am 9 weeks along in a very "SURPRISE" pregnancy. I won't get into how many crazy feelings and adjustments we have been through; but I would like to make a point. On Friday, after some red flags, we went into the Dr. to find out the baby was measuring three weeks behind and there was no heartbeat. I knew I didn't have the dates wrong; mostly because that date would put me conceiving the day I took the test (which was very much positive). I knew the pregnancy was over... and today that was confirmed.

So, I sit here... grieving for the baby I am losing. For reals... losing! It is a very different feeling than when they place a beautiful almond eyed floppy girl on my chest and I knew the girl I had spent so many months dreaming of would never be joining our family. No... I can honestly say that any tears shed that day were NOT tears of grieving. I had my sweet little baby. My little girl. A daughter of God. She was alive and was ready to be loved by her family. Down Syndrome is not a death sentence. Far from it! Down Syndrome is a hurdle. A journey that has many ups and downs and tears along the way; but a journey filled with laughs, hugs, snuggles, cheers, and memories. A journey I would take again any day... if I had the choice!

Day #2: Sleeping Beauty

Yesterday I came home between errands to find Sadie sleeping in the hallway. Unfortunately, I didn't get a picture; but looking back a have plenty pictures of her sleeping to share. This is just in the last 6 months. I believe it is a glimpse into her personality and development. She plays hard until she drops!
She put herself to bed one day after school.

Sleeping with her "husband" Woody the night before her last surgery.

Yeah, I kinda think this one tells more about me as a parent than Sadie... what kind of mom lets her kid fall asleep on the kitchen table?

After church...

After surgery... this girl has a hard time waking after surgery. She was a zombie!

Flexible sleeping. When she was little she use to sleep on her back with her legs up by her ears.

ok, this one cracks me up. She can sleep anywhere... but do you see her mouth.
She looks like Beaker from Muppets!

See the resemblance???
I love my Sadie... happy, crazy, sassy, awake or asleep- she is awesome!

Day #1- Sadie, a bookfair, and a happy dance!!!

Grab This Button

Today is Day #1 of '31 for 21'. I will try to blog all 31 days of October (which happens to be Down Syndrome Awareness Month) and use this time to blog/brag about our life loving someone with an extra 21st chromosome! During the 6 1/2 years Sadie has been in our family we have had many ups and downs (no pun intended). Seriously, she has fought for her life, we have spent countless days at therapy and Dr. appointments, and we have felt left behind while her peers soared past her in development. However, we have spent more of our time watching our little girl prove her worth, accomplish what we believed unobtainable, and gain respect and love from all who know her. My goal this month is to give you a glimpse in our family and help you understand how Down Syndrome is a hurdle and not a road block. How, even though her journey may be different and a little longer, Sadie can learn and will be successful!

So, I've been dying to share a story from yesterday...

I remembered that Sadie was scheduled to attend the bookfair but had forgotten to send money for her. I was sad but wanted to know if she was disappointed.

Me: "Sadie did you go to the bookfair today?"

Sadie: "Ummm, no... I no have money and one of my parents isn't here. I know, I go get my McDonald's and get a book."

Me: "You are awesome!!" HIGH FIVE & HAPPY DANCE!!!

OK.. here's why I am soooooooooooo excited about this little exchange.
1) she remembered and understood the two reasons she was unable to get a book at the bookfair (I have an 11 year old who doesn't get that)

2) She made a solution!!!! She thought since she didn't have money at school she could go home and get some money (SO WHAT IF it is play money?) out of her McDonalds cash register.

This is so awesome! I remember 3 years ago when we would ask her how school was and her answer would be something like, "backpack" and when we asked again she would say, "bus.. yellow". Now she is rockin it and telling me what happened, why she couldn't do it, and how she was going to solve it!

Reason #1 why my kid with down syndrome is awesome- she will learn, in her own time, and we will stop, high five her, and do happy dance!!!!!