Step Up for Down Syndrome Walk 2011

John Michael's Mates came out in full force to help us STEP UP FOR DOWN SYNDROME last Sunday.  We had 30 team members made up of family, friends, babysitters, 7th Graders and High School students sporting their best pirate gear.

Anna and her friends lead the way...

Cap'n John Michael in his trusty pirate ship.

LOVE the team spirit going on!

Greta and Cap'n Dad... Arrrrgh!

And Oma Crumley, whose shirt says "Old Bag".  I LOVE her sense of humor.  She designed it!

Make way for John Michael Mates!

First Mate Luke had a great time, too.

Big buddy, Frank, is like another big brother to John Michael.

I love watching these two together...

 

Mr. M and Luke took to land for the last leg of the walk.  So sweet!

John Michael waving hi to his friends!

In all, John Michael's Mates raised $875 for Down Syndrome awareness.  The money will directly benefit Sacramento's Down Syndrome Information Alliance to help new families and support individuals with Ds.

Can't wait til next year!  Arrrrgh!

31 for 21 -- A Glimpse into John Michael's World -- Day #20

It's been a very long time since I've posted a video of John Michael.  He got these bowling pin animals out of the garage and wanted to play with them after preschool today.  I love how he lines them up, in a nearly straight line.  They're like his little buddies and then when they're not looking, he bowls them over with his ball and starts all over again.

BUT!  In this video, Luke totally steals the show at the end... I love his little "yeah" and his "hi", even if he's being naughty.  ;-)

I just wanted to point out that you should talk A LOT to your child... re-inforce words, ask questions, model correct language and be patient for the answers... This is important for ALL children, but good modeling is crucial for kids with Ds who are such copycats.

31 for 21 -- Pumpkin Patch Therapy -- Day #18

OK, so I'm taking a slight break from posting Down Syndrome Awareness Facts, and focusing on some family fun...  John Michael had an awesome time at Dave's Pumpkin Patch last weekend.  It was his first time on a pony and he was soooo happy to be there (after not wanting to get on in the first place!)

Greta's horse was named Rainbow or Sunshine or something cute like that.

 

Nic and Luke on the hay bale pyramid.  The sky was gorgeous with sweeping clouds...

Smile!

Oh, that's better...  isn't this hay ride fun?

Greta, striking a pose in the corn maze.  This thing was huge and took a good 20 minutes to navigate through.  Luke was well ahead of all of us...  I was actually worried that he could get lost in the corn!

John Michael and Greta scaled the tall pyramid with big brother, Nic.

Made it!

 

Here, piggy, piggy... stinky little things...  The stench didn't deter John Michael one bit...

Finally, the kids ended up in the feed corn box.  Luke was having a grand ol' time.  I think every home needs one of these  :-)  So much cleaner than sand and fun to play with...

John Michael and Greta were in on the action, too.
 

You can probably imagine how many corn kernels I found in the bathtub at bathtime...  LOL!

Greta wanted to be buried...

She said it felt good...  John Michael gladly obliged...

Big brother, Nic, thought it was better than his mattress.  (Sorry, big guy!) 

This was not a flashy pumpkin farm by any means, but it did have lots to offer.  It was a Groupon deal I purchased, so we headed out there to try a new place.  Our family loves to spend time outdoors, and for John Michael, it was also therapeutic, like OT and PT wrapped up neatly in one fun package... While there, he worked on gross motor (climbing the hay bales and running through the corn maze), fine motor (shoveling corn kernels), and sensory issues (riding a pony and feeling the corn kernels with his fingers and on his lap) all while having fun.

Remedy for a happy family outing...  enjoy the simple things in life, find fun things to do in the ordinary, spend time with the family outdoors in nature and unplugged.  It's good for the soul and good for the family.

‎31 for 21 -- Don't be sorry... -- Day #15

Scenario:

Your dear college friend just had a baby with Down syndrome.

Response (pick one):

A. Wow, I'm glad it's you and not me... God only gives people what they can handle.

B. Congratulations on the birth of your baby. I don't know much about Down syndrome, but I want you to know I'm here for you and would love to know more when you're ready. Is there anything I can do for you? Bring a meal?

C. I'm so sorry. What a tragedy. Didn't you have the [prenatal] test?

D. Your baby doesn't look like he has Down syndrome. Maybe it's just a "mild" form.

Correct answer: (It should be obvious... B, or some version of that) A baby is a baby is a baby is a baby... no matter what! That mom just spent the last 9 (or so) months with that baby and the birth of a baby is to be celebrated first and foremost. Help your friend, as you would any friend, and be supportive. Be a comfort to her and offer to bring a meal or watch the baby while she rests. 

31 for 21 -- What's wrong with Holland? -- Day #13

Did we get on the wrong plane?

I don't think so...

Holland is lovely, isn't it? (Stay with me here...)

Oh, yes, even Luke is in on it...

I don't know about you, but it looks like John Michael is perfectly happy being in "Holland"!

Many people who have a child with special needs are familiar with the 1987 Emily Perl Kingsley Poem, Welcome to Holland.

You can click on the link, or do a quick Google search, but the idea is that having a baby is like planning a vacation. You plan your trip to an exciting place like Italy, but when you arrive, you find out you actually landed in Holland. You're shocked.  It's not where you planned to be, but after a while, you begin to notice the beautiful things of Holland, such as the windmills, tulips and Rembrandts.

Personally, I love Holland.  My mother-in-law is from Holland and her family still lives there.  (John Michael and Luke just got their new shirts from Oma who just got back from Holland earlier this week!)

The poem speaks to many new parents.  You plan to have the "perfect" baby, but then you find out your baby isn't what you were expecting.  Some moms, like me, however, don't embrace the poem. 

First, I want to say, what's wrong with Holland?  It's gorgeous!  My friend, Lisa, Sheridan's mom, would argue that she's still in Italy, and in a way, I agree with that, too.  But in the poem, there's a line that I just can't relate to...

"And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss."

For me, I disagree about the pain "never, ever, ever, ever go[ing] away"...  Yes, John Michael has Down syndrome, but I don't go around wishing he were someone different.  He is who he is and who he is meant to be.  As soon as we realize that, and stop dreaming of what might have been (because he never was without that extra chromosome), then we can move ahead and live in the present.  It's not so easy for some parents, and I don't mean to trivialize their journey...  For me, though, I never felt like I got off the wrong plane in the first place...  If that means we ended up in Holland, then so be it... I guess it's where we were meant to be...

‎31 for 21 -- What has your child with Ds taught you? -- Day #7

We like to use the NDSC’s tagline that our kids are “more alike than different,” which is very true. Kids with Ds might look a little different or learn at a different pace, but in most ways, they are more like their family than not.

Through John Michael, we’ve learned that differences are what make the world a better place. John Michael has a way of reaching people with his huge smile and upbeat personality that most people can’t. It doesn’t take a whole bunch of words or a college degree to be important.

John Michael shows that all life truly is precious and our eyes have been opened to a whole new world because of him.

31 for 21 -- A Message from John Michael (must read!)-- (Day #6)

AHOY, MATEYS!

It's time to sign up for my team,

"Team John Michael"

at the

STEP UP FOR DOWN SYNDROME Walk.

Sunday, October 23, 2011
William Land Park
9am to 1pm

(Hint:  Get there early for parking, a new t-shirt, and some cool entertainment.  Stay after for free lunch (for registered walkers) and more entertainment.)


C'mon, already, what are you waiting for?  You want me to jump through the computer and drag you in?

Here's the link to go directly to my Team page.  https://sna.etapestry.com/fundraiser/DownSyndromeInformationAlli/stepup/team.do?participationRef=232.0.36598818 

You need to register each person individually... it's a bit of a pain, but you've gotta do it.  No way around it... for little kids, you can make up an email address.  No problem...


Now, come closer and listen carefully...
I'm serious about this...

Please register today!  Don't delay!

 If you really, truly can't walk with us, then would you consider making a small donation to help the Down Syndrome Information Alliance (DSIA)?  They do so many great things for families and individuals who have Ds... me, included.  They also help new parents get updated information, support and encouragement.  Most people don't think people with Ds can do very much... I totally disagree!  Get to know me and you'll see why.  ;-)

Now, GO!  Do you part!

ARRRRRGH!

31 for 21 -- Behavior (Day #5)

Some of you saw this today on facebook.  No, Luke doesn't have Down syndrome, but he is exhibiting stinker-like behavior lately.  He's 16 months old and getting mighty comfortable around here.

This is a post about a kid with Down syndrome, why am I putting up pictures of a typically-developing toddler?

Because, when John Michael was born and I read about all the things that could "go wrong" with him... behavior was a big worry for me.  While John Michael has certain behaviors that are annoying, like bopping his sister, Greta, or little brother, Luke, in the head when he stands next to them, or pushing someone out of the way, he never, ever, smeared oatmeal all over his hair and face.  So, while our kids with Ds can exhibit certain undesirable behaviors, so can other kids... Ds or not.

Consistency is the key to changing a behavior, as well as positive reinforcement and redirection.  We also use "Time Out" as an effective pause in naughtiness, and then a verbal apology to whomever he hurt.

(Double Trouble!  John Michael figured out the baby safety locks and is helping Luke get into my "forbidden" cabinet)

Behaviors also come and go with John Michael.  He used to open the toilet lid and he used to play with the dog's water bowl (and do the food to water transfer science experiment  ;-0  ).  He used to pull Greta's hair and he used to toss his unwanted food to the dog (oh, Mitzi loved JM during that phase...)  But, like most things, he was exploring, testing limits and trying to get my attention.  Luke does the exact same things right now, which makes me realize that John Michael's behaviors weren't necessarily a-typical, they just lasted a little longer to correct and work through.

So, there you have it... another example of how JM is "more alike than different."

31 for 21 -- Siblings (Day #4)

I know you can't see her shirt... but it says I {heart} DS, just like the famous I {heart} NY shirts. She got it at the NDSC Brother/Sister Conference in San Antonio this summer. Anna is one of John Michael's older sisters and has come such a long way since she first learned of his diagnosis.

I'm focusing on her, cuz she just sent me this awesome photo for my birthday today. She and Doug are in San Francisco getting ready to board the tall ship, Balclutha for the next 20 hours or so. It's going to be a long, cold night in the galley!

When John Michael was born, Anna was in shock. She told me she didn't love him and hated the fact that he had Down syndrome. Dealing with my own feelings of grief, it killed me inside and I didn't know how to fix her. As I quickly grew to love him unconditionally, I realized that only patience, love, and prayer would get her to see past his diagnosis. It was a journey for her, a painful one, but she got through it beautifully. She recently wrote an article for the Down Syndrome Information Alliance (DSIA) New Parent Guide about her experience and how she came to love John Michael over the course of about 9 months or so. Today, she is head over heels in love with him and wants the world to know how amazing kids with Ds are. She can't wait to go back to the NDSC Brother/Sister Conference every year possible.

John Michael is very lucky to have 4 fantastic siblings. Nic, the eldest, is really JM's best buddy ever, they share a room, and a special brotherly bond. Nic was at the Convention, too, (it was his 2nd time) and would love to go back again. Watching him dance with a girl with Ds just made my heart soar!

Greta is only 6, but she has a very large personality ;-) She is John Michael's biggest teacher and "coach" and dance instructor and cart wheel teacher and all-around role model. I expect great things from her. She, too, loves all the little kids in our Sisterhood group.

Luke is only 16 months old, but already a wonderful addition to the family. He and JM are very sweet with each other and enjoy rolling around, chasing each other and making music throughout the house. They also get into lots of trouble together. Oh... to be younger and more energetic! These boys won't let me grow old... that's for sure!

I know some kids with Ds will be only children. That's OK. But, I hope they have close friends that they can play with, learn from, and teach things to as well. John Michael's siblings are definitely more compassionate and open-minded toward those with differences than ever before and I'm thrilled to watch their futures unfold.

31 for 21 -- Broken? (Day #3)

Just because something looks a little different, or doesn't "function" the same way, does that mean it's broken?


Is John Michael broken? Does he need fixing?


Society is uncomfortable with differences. Often people will either stare, or look away so as not to be bothered by it. Difference, that is...

If John Michael isn't a "high achiever" academically speaking, is he less worthy?

My parents didn't go to school beyond 8th grade, but they are smarter than many book-smart people I know.

Let's not measure worth by IQ and "what" you know... John Michael is a smart, clever, quick little guy who loves to learn and explore and play. He gives the greatest hugs and best spontaneous "Love you, Mom" EVER! John Michael's preschool teacher, who has not had experience with kids with Ds before John Michael, recently told me, "John Michael will never have a teacher who doesn't love him."

That spoke volumes to me.

He has the ability at his young age to change hearts and minds and help people be more caring, compassionate, open-minded to differences, and it doesn't matter if he looks or acts different. It really is what's inside that counts and for another to have the right eyes to see.

31 for 21 -- Response to a question (Day #2)

Fish heads fish heads, Roly poly fish heads, Fish heads fish heads, Eat them up yum! Where does the head go?

Ta da... wait, something's not quite right...

That's better.
(photos taken at the Bay Area Discovery Museum in Sausalito, CA)

This boy seriously LOVES train sets!

I'm posting here and on facebook my daily 31 for 21 posts;, that is, 31 days throughout October, which is Down Syndrome Awareness Month, posting about Trisomy 21 (T21), aka Down syndrome.

Here's my response to Gretchen's question (she responded to the previous post...):

Gretchen: Awesome. Can't wait to read! I'll start with a question. What is one of the most challenging things raising john michael so far in terms of his development? Id like to know his skills and then one thing you find difficult.

Monica: Thanks for asking... Raising JM (as w/ any kid) has its rewards (more of these) and challenges... It changes as he ages... I used to be challenged by his lack of verbal communication and now he is a chatter box and talks all the time (although still in 2 and 3 word sentences, but we're working on it). Currently, it's behavior. He bolts any chance he can... it's very hard to take him and Luke anywhere unless they're strapped down in a stroller. JM will find an opening and escape. I guess he loves the adventure and freedom and lacks that sense of danger. He also will bonk his little brother or Greta in the head with a toy if he's higher than them (he's standing, they're sitting...) Poor Luke! He's also the most stubborn individual I"ve ever met, but I'm the parent and my will is stronger and we'll get through it. So, yes, challenges... but not unlike some other kids. He does have pretty good attention span and can play with Legos or at the train table or outside play kitchen for a long time. He's also very good at school according to his teachers. Developmentally, I wish he could express his deepest feelings to me... I find that the most heartbreaking right now. Skill-wise, he's jumping with both feet a couple inches (yay!) and can do wooden puzzles with pictures with ease. He recognizes basic colors and shapes and is working on letters. He eats with utensils, has good manners, says prayers (usually) and brings each family a rosary on Sunday nights. He pushes his chair in and cleans his plate into the garbage. Tries to make his bed (does pretty well...) and he loves to teach Luke new things.