Friday, August 23, 2013

First Week of Kindergarten -- Fully Included...

I had the chance to speak to John Michael's Kindergarten class today about Down syndrome (I don't think I actually used the term Down syndrome), how everyone is different, and that differences are what make the world such a great place. I also read the book, "My Friend Isabelle" by Eliza Woloson to the class. The kids were fantastic! Very quiet and attentive as they sat on the colored rug and I sat in the teacher's rocking chair.

I asked if anyone had questions, but at this age, they just wanted to tell me about their own siblings or friends... It was cute! One boy said his big brother is faster than him, but his feet were bigger. Another boy said that he is faster than his baby sister, who is 2 years old. Haha. Then one girl, right in front, said, "John Michael taught me how to dance." That totally warmed my heart. I'm not so sure what he taught her, but he does love to shake his booty and dance. I was also thrilled to know that he felt comfortable enough to do that at school...

I said my good-byes and the teacher sent an email with the letter (you can click to enlarge), as well as send home a hard-copy of the letter.


What's so amazing is that John Michael is the first boy with Down syndrome to attend this Catholic school. He has older siblings who've graduated from there and one sister who is in 3rd grade this year. The community loves and supports him and I often hear great things about John Michael. Sometimes, he gets in trouble, too. He was sent to the office today for kicking kids on the rug. He had a time out, but couldn't resist scooting his chair closer so he could continue to kick. Sigh. His teacher sent him to the office for some time away and she said he had a great day the rest of the day. Yay!


So, he made it through his first week of Catholic school, fully included without an aide. We are looking for a part time aide to support him in the classroom as things get more difficult for him. But for now, I will mark his first week as a HUGE SUCCESS!!!

Within 2 hours of the letter going out via email, I already had 4 lovely responses from parents in the classroom thanking me for taking the time to write the letter and share about John Michael, opening up dialogue right away. It's a win-win. The letter isn't something I wrote on my own, though, so I want to give credit where credit is due. A huge THANK YOU to Gillian Marchenko, author and mom to Polly with Ds, for sharing the letter on her blog for all of us to copy and use. http://www.gillianmarchenko.com/inrtoducing-your-kid-to-the-class-school-take-home-sheet-for-child-with-down-syndrome/

And if you check out her website and blog, there some great links for you to read on the sidebar as well, like 10 Things Not to Say to a New Parent of a Child with Down syndrome. :-) http://www.gillianmarchenko.com/ten-things-not-to-say-to-a-new-parent-of-a-child-with-down-syndrome/

Before I left, I asked the kids to be John Michael's buddies on campus. Everyone wants friends and he might need a little help sometimes. At least half the class said they would (that's a great start!) These kids will grow up with John Michael and Ds will be "no big deal" to them. Two boys, fraternal twins, have already told me that they want to be John Michael's friends. Soooo sweet. I feel so blessed!!

Stick around awhile and you'll see I'm all about educating parents who wouldn't otherwise know these things. Because 6 years ago, I was that parent... and no one took time to share these tips with me... so I'm paying it forward.

Have an awesome day!

Monday, July 22, 2013

Twinkle Twinkle, Little Star (John Michael and Luke duet)


Naptime and bedtime are sometimes challenging, but often they're magical around here... the boys LOVE to sing, cuddle and sing lullabies and I get the sweetest moments with my little guys when it's almost time to hit the pillow.  When Luke was a baby, he had a terrible time falling asleep, so I would wrap him snugly, cradle him in my arms and softly sing or hum "Rock-a-bye Baby" over and over until he fell asleep.  I was at my wit's end and that was the best I could manage ;-)  Well, it eventually started working and he would fall asleep within a few verses.  Today at age 3 he still requests the song and I can see his eyes getting heavy when I begin to sing it softly and slowly.  Kinda like a Pavlovian response to sleep, but it works!  

These days, the boys love to sing along.  One of my most requested songs is to sing "Stay Awake" from Mary Poppins.  I love it!  "Stay awake, don't rest your head.  Don't lie down upon your bed.  You're not sleepy as you seem.  Stay awake don't nod and dream..."  The boys often join in and sing with me (which is counterproductive to getting them to rest, but their stall tactic is also very sweet).  Other songs include, "Hush little baby, don't say a word... Mama's gonna buy you a mockingbird..."  John Michael knows EVERY. SINGLE. VERSE so this goes on for a while.  And we always end with Twinkle Twinkle, Little Star.  So here's my little stars performing their own rendition at Luke's naptime today.  It's also the first time Luke has gotten in the spotlight on his own and sung a song on video.  John Michael joins him for the 2nd time through.  Enjoy :-)  

I'll post more about the NDSC Convention and my take-aways later...  there's a great app you're going to love!

Cheers,

Monica




Saturday, July 20, 2013

Ds Parenting 101 and Handwriting Without Tears Workshops

This morning I attended two excellent workshops.

The first one was Ds Parenting 101: The Straight Scoop with Tools and Rules by Natalie Hale. It was based on her new book, "Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier". Everything she covered, particularly non-compliance, was applicable to John Michael and understanding oppositional behaviors. Yes, my sweet, angelic "happy all the time" child has quite a few stubborn traits and behaviors that are challenging us. I know, hard to believe LOL, since most of what I post has a positive spin on Ds.

John Michael is a very sweet, smart lovable boy, but he can be very non-compliant at the simplest requests. He knows the rules... Each morning he has to go potty, eat breakfast and get dressed for school. Some mornings he comes in our room at 6:15 for some cuddle time before our day begins. He always tells me, "Mommy, I love you so much!" I cherish these tender moments, but as soon as it's time to get up, he practically runs away from me to avoid his morning routine. Sometimes he does it all willingly and other times I have to assist every step of the way. We've worked with a behavior therapist, established a rewards system and still, it doesn't always work.

I think this new book will be great for giving practical examples of how to motivate your child. I like what the author said... You have to use humor and be permissive with their feelings, acknowledging when he doesn't want to do something and then give him a choice of two things he can do. He feels in control and you still win. I love her light-hearted approach yet she's full of wisdom from parenting a child, now a man, with Ds, ADD and oppositional behavior disorder. Looking forward to it!

http://www.amazon.com/Down-Syndrome-Parenting-101-Must-Have/dp/160613020X

The second workshop was called Scribble, Color, Draw: Key Readiness Skills Essential for Handwriting Success presented by Diane Eldridge, RN, COTA.

I loved this class! It was completely hands on and she taught us how to help our kids gain more strength for handwriting, how to write their letters in the most logical order and creating letters from simple wooden shapes, starting with the big line at the top. We talked about eye-hand coordination for coloring, writing and eventually drawing a figure of themselves. She showed an example of a boy drawing a stick figure of himself with just a head and sticks for legs. This is totally how John Michael creates a person, which is about a 3 yr old level. After doing a fun exercise on the floor by creating a "Mat Man" from the wooden shapes and setting it to song, the boy was able to draw a head, body, arms, legs, face and a belly button. I'm excited to try this with John Michael and Luke and see a before and after.

She also recommends breaking crayons in half so they have to hold it with a proper grasp and squeezing and pinching Play Doh for hand strength. She set everything to song and made it fun and light. I think that's the "missing link", so will definitely be adding song to our learning and coloring sessions. Finally, I learned that the best way for kids to write letters is not by tracing, but by imitating. So, I would write capital letters first or a word and he imitates on the line below using simple shapes of "Big line, Little line, Big curve and Little curve". Very simple, and very easy to learn.

http://www.hwtears.com/hwt

That's all for now. I haven't figured out how to post pics from my iPad, but will as soon as I can.

Friday, July 19, 2013

Blogging guilt and the Barney song

Oh my gosh! I'm at the National Down Syndrome Congress convention in Denver and just left the Bloggers sharing session. I don't even feel like I can call myself a blogger when I haven't touched my sadly neglected blog since November of last year! But I was motivated to go anyway, in hopes of meeting IRL (in real life) some blogging friends I've made over the past few years.

I'm soooo glad I went! Not only did I get to meet some awesome blogging moms (and a brave dad who is going to start one), but I realized that I do have something to say that others might want to hear. A couple moms said, "I've missed your posts" and another reminded me that I sent her a presentation a while back that she has used for her own son's class and she was grateful.

My lack of blogging has resulted from having a busy life with 5 kids ('nuf said) and I'm on facebook more since it's instant gratification. I also started a business last year which takes my time and quite honestly, I often feel like I don't have good enough material for a blog. Today was a good reminder that people do want to read about IEPs, inclusion, behavior issues, sibling relationships, and whatever successes we are celebrating, even if it's not "all good news". Just to be real...

Of all John Michael's strengths, I'd say speech and communication are his greatest gifts. And being a singer, I always wondered if he would ever be able to carry a tune beyond a 3 note range. I'm excited to share his latest rendition of Barney's Theme Song, "I Love You". Thanks to Linda Nargi for encouraging making me post it on my blog. I do apologize that the video may not be embedded since I'm on my iPad and don't remember how to do it, but I promise it's worth clicking and listening. My big guy, now 5 1/2, can SING!!!

http://youtu.be/x7mDQ5wTRSg



Cheers!

Monica

Monday, November 5, 2012

John Michael's new verbal and baseball skills...

John Michael's verbal skills have kicked up yet another notch. Saturday at nap time after a busy Step Up for Down Syndrome walk, I followed him to his room to put him down for a nap. He obliged, but climbed into big brother Nic's bed, covered himself up and proudly told me, "I love Nicky's bed. It's so comfortable."

I couldn't believe it! A month ago, he might have said, "I like Nicky's bed" and that would've been the extent of it.

NEVER MIND?


These are a couple examples of his spoken language growing. He's using pronouns mostly correct, stringing words together with "and" and has many sentences going up to 8 words at a time. He is also singing with much better pitch and is hitting notes in his range with better accuracy most of the time. I LOVE this being a singer. He's also quite the story-teller about a dream he frequently has. He tells me there's a bear stuck in his window. I ask, "What color is the bear?" "White." "Is it a nice bear?" "No, it's mean." "OK, should Mommy push the bear out?" "YES!"

On a not so great note, he called his sister Greta "stupid" last week. In our family, that's a pretty bad word... not that the big kids don't occasionally say it, but in general, we don't use it. Breeds a negative attitude... Well, he must've heard it somewhere because it was used in perfect context, to belittle someone. Of course, it got a big reaction out of me and in hindsight, I should've ignored it, but that's hard to do... I heard it a few more times after that and not again lately. I'm hoping it's been fazed out for a while at least.


Yesterday, he wanted to climb up onto my bed. He grabbed a footstool from the bathroom, set it at the foot of the bed and tried to climb up. He struggled a couple times and before I could offer to help, said, "Never mind." And walked out of the room.
In other exciting John Michael news... he is participating in the Learning Program on a monthly basis with homework at home. It emphasizes reading sight words, matching picture to picture, word to word and eventually picture to word. Last night he read all 8 "Going Places" words with the pictures covered up correctly. Car, Bus, Train, Motorcycle, Airplane, Boat, Bicycle... I was thrilled! Kids with Ds are such visual learners and we should've done this with him 2 years ago. Better now than later...

He is turning five 5!! in 9 days. He is becoming more willing to dress himself, often proclaiming, "I DO IT!" Awesome! He uses the potty and stays dry 95% of the time but still needs prompting to go. He can do it himself from start to finish, with handwashing included, but needs help snapping pants. He loves to help me cook, which usually means stirring something. He has an amazing baseball-throwing arm, is catching much better and is an impressive batter. I can get him to do almost anything if I promise to play 2 minutes of baseball with him. It's magical... He has little interest in kicking a soccer ball (like his 3 older sibs), but give him a ball and a bat and he lights up!

So I leave you with a short video highlighting John Michael's batting and throwing...

Tuesday, September 25, 2012

Celebrating Granny's 90th Birthday in Style

My husband, Doug's grandmother from Holland flew to the States to celebrate her 90th Birthday with us! How fortunate we are! She's a beautiful 90 year old woman, traveling alone, is still fit both mentally and physically and sharp as a tack! What a blessing for our children to experience their great-grandmother, as well as great uncles and a great aunt who also made a long journey from Alabama and Holland to surprise Granny for her 90th!

We started the evening at our house in a Hummer limo. What do you get your husband's 90 year old grandmother who really doesn't need anything? It's all about doing things that are memorable. The kids were thrilled to go in a limo! My parents (originally from Germany) joined us as well. A first for all of us!

We surprised Granny and the other Dutch relatives by having the driver knock on Doug's mom's front door. I LOVE the look of surpise on Granny's face as she began to figure out what was going on! It was priceless! Champagne and Martinelli's made the ride even more fun!

We drove to Buca di Beppo and dined in the Pope Room. Soooo fun! Now she cay say she dined with the Pope and cross another thing off her bucket list! haha...

The evening ended perfectly. Truly a memorable experience that we'll never forget.

We love you, Granny!



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Friday, September 14, 2012

John Michael -- Welcome to Catholic School TK

John Michael is attending two schools this year...

On Monday through Thursday, he attends the same inclusion preschool / Head Start program where he's been for the past 2 years already.  It's a great Inclusion program where 15 are typically developing kids and 5 have special needs of some kind.

This is the school where he gets his speech therapy (25 min, 2x/wk) and adaptive PE (25 min, 2x/wk).  It's where he learned to ride a trike, sit quietly at circle time, be a line leader, identify his written name, use the potty by himself, wash hands, eat a meal "family style" with other kids, clean his plate and push in his chair.  He also learned to sing, count, cut with scissors, use glue sticks and play cooperatively with others.

It's been a great 2 years for him.
Beginning this school year, John Michael is now attending our older kids' Catholic school.  He attends the transitional kindergarten classroom, unassisted currently.  He goes to Mass and sits with his sister, Greta, and learns to be quiet and still.  He gets to play with lots of kids in a great, loving environment (the principal was completely open arms and welcoming to us ever since John Michael was a baby!).  He is doing well, aside from a couple running (eloping) incidents and pushing other kids.  Luckily, the entire school KNOWS John Michael and think he's a little rockstar.  At snack recess, Greta (2nd grade) usually comes out to find John Michael and plays with him for 10 minutes while their schedules overlap.  I LOVE that she seeks him out! 

First Day of School

John Michael's teacher at the Catholic school hands out Behavior Bucks for good behavior. You can see he's already earning a good number of them!! NOTHING makes me happier! Really!

She also assigns nightly homework (yes, TK!) John Michael actually drew the lines from 1 to 2, 2 to 3, 3 to 4... you get the idea... and colored it in. I'm so proud of him!!



She also assigns nightly homework (yes, in TK!)  John Michael actually drew the lines from 1 to 2, 2 to 3, 3 to 4...  you get the idea... and colored it in.  I'm so proud of him!!

It really is true... our kids are more like others than different.  So true!


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Wednesday, September 12, 2012

What do you give a 90 year old?

Doug's grandmother from Holland is visiting these next 6 weeks and celebrating her 90th birthday with us this weekend.  Yes, 90th!!

She traveled alone and looks fantastic!  I can only hope to look as good when I'm her age!

So, what do you give a woman who has everything she needs and is turning 90?

I took advantage of an offer from Shutterfly to make her a nice book to take back home and remember us by.  It won't arrive until a few days after her birthday, though, so here's a sneak peek of what's to come...

Happy 90th Birthday, Granny!!  WE LOVE YOU!!!



Tuesday, July 31, 2012

Portrait Party to Raise Funds for Reece's Rainbow

          My friend, Danielle Parker, a local photographer (Danielle Parker Photography), approached me in June with a very generous idea.  Inspired by John Michael and other kids with Down syndrome, she wanted to find a way to help families who were adopting children with Ds.  So she came up with a Portrait Party idea...  20 minute sessions for $30 and Danielle would donate the entire amount, including her time over one weekend in 100 degree Sacramento heat, to Reece's Rainbow in honor of the child of our choice.  For an additional $10, families could purchase a CD of their photos. 
          The idea became popular quickly, spots filled up and 12 families took advantage of the photo sessions.  $30 for a professional photographer?  Unbelievable!!  But she wanted to make it afforable.
We raised $360 for Reece's Rainbow and the money will be split for two adopting families in the Sisterhood... The Sheffield's adopting Vinnie and The Jaco's adopting Jaxon, both boys are in eastern Europe and both have Down syndrome.
          Here are a few of our shots...  keep in mind, only 20 minutes at naptime in 100 degrees of dripping heat (yes, that's John Michael fake "crying" because he didn't want to take the photo and we had to wake up Luke to do the shoot)...

 

Me and my sweetie... Happy 18th Anniversary (yesterday).  If anyone had said on our wedding day we'd have 5 children, I would've said they were crazy!  Now I know who's crazy  haha.  But each one is awesome and unique and wonderfully made...
 

I love how the boys are looking at each other here...

"John Michael, what does Piet in Holland do?"  He wanted nothing to do with that.  Anna looks like she'd rather be in a different family :-)

My heart.  The reason I started this blog... the reason I have more friends than I can count... more sisters on this journey than I ever thought imaginable...

My spunky little man.  Full of love and the biggest hugs a mom could ask for...
Pure boy.  Pure stinker.

The is decidedly "the family photo" of choice  :-)

Brothers, bookends, biggest to smallest... 6'4" to little man...

Who doesn't love Greta!

These two melt my heart...  These boys laugh, run, play, cry, fight, push, hug, kiss, and care for each other like no other!

Need I say more?
 
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Monday, July 2, 2012

Sisterhood in Cabo San Lucas (May 2012)

Back in May, I spent 5 amazing days in Cabo San Lucas with 6 of my Ds mama sisters!  No kids, no schedule, no housework, no worries...  

The margaritas from Monkey Business Bar were so huge, we had to share!  And look at the garnish!  A lime inside a lime to make the sun.  Gorgeous!

You might recognize some of these awesome women from Blogland or Facebook...
L to R:  Gina, Lisa, LauraBeth, Irma, Debbie, Jen and yours truly.

Lisa and Irma on our glass bottom boat headed to the Arch and Lover's Beach.

Debbie and I soaking in the rays before getting out at Lover's Beach...

Can you see the horse head in the rock formation?

Here's Lover's Beach and the pathway to Divorce Beach.  The water is so wild over there, some don't return (or so it's said...)

I don't recall the name of this rock formation, but it was an upside down Baja...

The Arch. 
Wild, turbulent waters where the Pacific Ocean and the Sea of Cortez meet.

Lands' End.
Literally.
I'm guessing the sea lion could care less...

Lisa making our mark at Lover's Beach...

2012 SISTERHOOD (T21).
Too bad it only lasted a few minutes...

Matching bracelets from a Mexican artisan shop!  I used to make this pattern from Wrigley's gum wrappers as a kid.  Who knew it would some day be art?!

Amazing brunch in Cabo del San Jose!  The food was so fresh and delicioso!

With my sisters.  Sadly, two had to fly home that morning...  :-(

After Mass in a Jesuit mission built in 1730.  I LOVED that the Mass music was a Mariachi Band in the balcony with full harmony and accordion.  Sooooo wonderful!!

Sharing an afternoon Corona with Jen on our balcony after a day of doing not so much  :-)

Monday morning... our time is almost done.  Spending our last few hours at the beach and swimming in the sea.

The perfect balance of relaxation and fun!!!
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