Monkey Musings

Double Trouble

2012-01-25T19:20:00.000-08:00

Oh, yes... he gets that distinction all by himself.

The Elephant Hunter

2012-01-18T09:42:00.000-08:00

The Elephant Hunter

Don't be fooled.

Under this cute exterior, lies a very powerful
Elephant Hunter.

He means them no harm... he only wants to find them so he can wash the elephants and make them clean.

Meet his cute sidekick, who's not very serious about helping...

Filled with special water, The Elephant Hunter straps on his powerful backpack watersprayer and sets off on the hunt.

Where could those elephants be hiding?
Not here...

He senses their presence on the other side of the fence and calls them.

His trusty, red-headed assistant spots them!

He lifts up his powerful water sprayer.

Shhhhhhh.... Shhhhhhh... Shhhhhh....

His sprayer reaches the elephants. All clean!

Job well done.

Looks like Mr. Turtle could use a wash...

The end.

Wordless Wednesday -- Telling Secrets

2012-01-11T13:43:00.000-08:00

Boredom Buster: DoADot Art!

2012-01-09T11:04:00.000-08:00

Need a fun, colorful boredom buster idea for indoor days?

I've had this supply of Do*A*Dot Art non-toxic bottles since 2004, and thought I'd pull it out this morning to see if John Michael and Luke were ready for it.

I had a couple sheets left from a Christmas art project I did for Greta's 1st Grade class last month, so we went to work.

Before even getting started, John Michael had fun unscrewing the cap. Good fine motor therapy, right? When he was finished, he lined all the bottles up and counted them. Good for preschool skills, too. :-)

We divided the colors and he went to work. John Michael made all of this by himself. Pretty nice, eh? I like how he filled up his page and got enough pressure to make complete circle dots in many places.

Luke tried, too. The red and green dots were mine, but otherwise, he did pretty good for his first try at 19 months old. :-)

Do*A*Dot Art isn't inexpensive, but it lasts forever and stays perfect with the lid on. This was a "shimmer" pack of 5 I purchased for $14.99 at Learning Express back in 2004. The other colors are from even before then.

But what I really love about it is that it's super easy to use and hold, non-toxic (yes, Luke decided to paint his mouth) and it's really, truly washable. I got a couple dots on my shirt and jeans and they both washed out with some dish soap. It is actually harder to get this stuff washed off your skin than your clothes, so Luke looks like he smashed blueberries all over his face. :-o

Attention Span

2012-01-03T15:52:00.000-08:00

Welcome and Happy New Year!

Just a little update on my sweet John Michael, who turned 4 in November, happens to have Down syndrome, and is an all-around awesome kid.

I had this Fisher Price Little People Nativity Set all packed up, ready to go into storage for another year, when John Michael came home from school and asked to play with the pieces.

John Michael's focused attention span continues to grow. He was at this spot, playing with these figures for about 45 minutes.

I love watching him concentrate. He knows exactly what he wants, where to put things, and plays very nicely. Here, he put all the pieces in a circle around the Baby Jesus. (I'll bet you didn't know Elmo came to pay homage to the Christ Child, did you?)

Quietly. Sweetly. Reverently.

No throwing pieces. No banging the angel's head on the table, or whatever else he could do. No trying to bite the Magi's head off.

"John Michael, where's the Baby Jesus?"

"In a row! Same!" proudly exclaims John Michael.

He was so proud to see all his pieces lined up in a row, as if to honor the Infant Child. Everywhere he saw a nativity scene or a manger, he would identify Mary, "Jofes", and Baby Jesus. He proudly tells me, "Jesus love me!" while patting his chest. He's learning the faith and knows that these figures (minus Elmo) are different... not like Legos or other play figures. Not because we explicitly said so, but because he's observing, paying attention and learning. While he can't say all the words, he knows the words to a number of prayers -- the Our Father, Hail Mary, Glory Be, "Now I Lay Me Down to Sleep", Grace before meals and the Sign of the Cross.

Can you tell I just LOVE this boy!

May 2012 bring you abundant blessings and much joy!

Thanks for reading. I hope to hear from you more this year :-)

Monica

Merry Christmas!

2011-12-24T11:52:00.000-08:00

Thank you for keeping up with us at Monkey Musings.

Christmas blessings to you and yours from John Michael and the rest of the Crumleys.

May your holidays be filled with wonder and awe, peace, joy, and love.

Monica

Ceramics Studio Painting

2011-12-12T21:21:00.000-08:00

John Michael recently spent a super fun morning at a ceramics studio as part of a birthday celebration for two of his little girlfriends, Eva and Annelies. We chose an ornament to adorn our Christmas tree.

I loved his concentration and willingness to paint and explore color and texture, using his fingers as well.

I tried to help him keep his colors separate so his ornament wouldn't be a big brown blob. I think we managed pretty well...

As a finishing touch, I helped him put his handprint on the ornament. He chose green. Unfortunately, I forgot to turn it, so his hand was at the bottom of the ornament, upside down. Oh, well...

I think he was quite pleased with his creation and loved spending some time with his friends.

Today, I picked up the finished piece.

I'm thrilled with the way it came out. Yes, lots of brown, but plenty of color showing through!

I love the colors!

And, not to be missed... the big, green handprint underneath the ornament. LOL!

It looks AWESOME on our tree!

Grateful for it all...

2011-11-24T15:16:00.000-08:00

When I see these photos (a huge thank you to my friend, Danielle Parker!), I am reminded why I do what I do and why God chose for us to have a larger family.

I count my blessings every day...
but sometimes, I get caught up in the craziness of everyday life with 5 kids going in 5 directions, that I don't truly appreciate what I have.

This big 4 year old is the reason I have a blog. His arrival rocked our world in both a scary and profound way. We brought him home from the NICU on Thanksgiving Day, 2007, and will forever be grateful to God for giving us John Michael. In four years, I have so much more clarity, so much more purpose, and I continue to be amazed at the journey we're on, the people we meet, and the experiences we encounter as a result of having a child with Down syndrome. Life forever changed the moment he was conceived, and yet, we didn't know to the degree that that would be so true.

We find greater joy in the simple things. I was giddy over the fact that he could climb up this fence and hang on!

I feel extreme gratitude at the bond these 5 share with one another.

The kids were apprehensive when I announced that we were going to having a 5th child. That announcement came on Thanksgiving Day 2009. I cried when I told them and told our family. The idea of it was overwhelming, but looking at Nic, my oldest, and Luke, my youngest, bonding makes the crazy moments all worth it.

Truly, I have been blessed beyond measure!

Nic is an amazing big brother to both John Michael and Luke. But, the bond he shares with John Michael is stronger than any I've ever experienced. I know they will always be close. Nic has always been service-oriented, but I think John Michael has opened him up to being accepting of all individuals who have a mental or physical disability. Seeing Nic at the NDSC convention this summer dancing with a teenage girl with Ds brought huge tears to my eyes (and my friends around me!). Before John Michael, I hate to say, I don't think he would have done that.

My heart melts when I see these two hugging and being sweet with one another. John Michael is becoming a very good big brother and is enjoying his role.

Luke, Luke, Luke... all boy... all love...
You better be sweet when I'm old and you're still in high school. LOL!

I LOVE this image! Two years ago we were thrilled that John Michael was walking more steady. Today, we cannot keep up with his running. Luke loves to play "Follow the Leader"...

"I'm gonna get you..."

You girls have the biggest hearts for John Michael. I don't know yet what you'll "be" when you grow up, but I already know that having John Michael as a little brother has already shaped you into compassionate, open-minded girls with a heart for serving those in need. That's HUGE!

My ROCK! My sweet husband, Doug, of 17 years. I cannot imagine life without him. These 5 kids give us a serious run for our money, drain our energy, and yet, fill us with pride and love that makes it all worth it.

My favorite people in the whole wide world!

I leave you with a few more photos. Ring Around the Rosie is a favorite :-)

We all fall down!

Sweet Luke... I could eat him up!

John Michael, you fill my heart each day with more love and pride and hope and joy... LOVE you to the moon and back, little man.

A Happy and Blessed Thanksgiving to you all.

I know you're out there and reading... Won't you leave some blog comment love :-)

John Michael turns 4

2011-11-16T23:15:00.000-08:00

John Michael turned 4 this past Monday! He had a super fun birthday party last Friday, but the camera I brought took horrible photos in the low light. So, I leave you with this short video clip of his actual birthday.

John Michael has changed so much in one year... too many things to list. The biggest change I see is his verbal communication. He is a chatterbox and is learning to ask for things in complete sentences; e.g., I want to ____, Can I please have a _____. This video doesn't show his verbal skills, but I'm so impressed! His vocabulary has increased exponentially this year and he's not afraid to repeat words that I don't understand. He is also starting to sing... really sing. Sometimes, while driving in the car, I'll sustain a note and ask him to sing it. He is matching at least 5 pitch changes, which tells me he can and will sing! Again, a thrill for me. He can sing Happy Birthday (with a little help), Old MacDonald Had a Farm, Twinkle Twinkle, Little Star and other simple songs, leaving the connector words out, but getting the message across. He is holding his crayon or pencil correctly and is taking more time to color. He can identify a few letters and numbers and knows the basic colors and shapes. He still remembers many signs, which is very cool! He says, "Hi, Lady" to women in stores (very charming) and freely gives hugs and kisses. He wants to help and be involved in what the family is doing. He has turned into a real "big brother" to Luke and often comforts him or hugs him when he's grumpy or hurt. He stays dry and uses the potty (although I have to take him every 1 1/2 hours since he isn't telling me on his own very often, but will say, "yes," if I ask him if he wants to go). He isn't pulling hair or hitting and rarely pushes anymore. He does steal toys and his new phrase in a serious voice is, "not funny!" to which we usually bust up laughing. He runs fast (arms flying wildly), jumps from a 6" footstool with both feet on the ground, does the Chicken Dance (oh, it's so cute!), and says his prayers, including making a sign of the cross and saying, "In the name of the Father, and the Son, and the Holy Spirit." He can also say the litlte "Now I lay me down to sleep..." prayer, leaving 1/2 the connecting words out. The sweetest is when he recently said at Mass, looking up at the crucifix, "Jesus, love me," while patting his chest. Yes, John Michael, Jesus loves you! And everyone else who meets him...

It's been a great year. Can't wait to see what lies ahead, but I'm in no rush...

(Not so) Worless Wednesday -- FUNDERLAND!

2011-11-02T14:46:00.000-07:00

We had an awesome time at Funderland last week! It was John Michael and Luke's first time and it had been a couple years for Greta, too.

Luke hitching a ride with my singing friend, Gaw. I needed another set of hands to pull this off!

By the size of their smiles, I'd say the old fashioned cars were a huge hit!

But I wasn't sure how he would do on some rides...

Let's just say... they were both happy to get off the boat!

Whooooo whooooo.........

John Michael didn't want to go on the airplane at first, but once it was moving, he had a blast. Greta got them up in the air, too...

More fun on the carousel...

Cars again... solo, this time.

It was so great to see him do this alone!

Greta was scared the first two times on the rollercoaster, but by the 3rd try, she was ready to go solo!

Finally, his favorite... the fishies. Luke cried instantly and had to get off... John Michael could've stayed on this ride all day!

Step Up for Down Syndrome Walk 2011

2011-10-29T09:18:00.000-07:00

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

2011-10-20T15:22:00.000-07:00

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

2011-10-18T14:24:00.000-07:00

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

2011-10-15T22:43:00.000-07:00

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

2011-10-13T23:29:00.000-07:00

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

2011-10-07T23:42:00.000-07:00

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)

2011-10-06T23:10:00.000-07:00

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)

2011-10-05T21:09:00.000-07:00

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)

2011-10-04T13:49:00.000-07:00

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)

2011-10-03T13:39:00.000-07:00

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)

2011-10-02T10:28:00.000-07:00

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.

31 for 21 -- Down Syndrome Awareness Month -- Day 1

2011-10-01T23:29:00.000-07:00

Today is October 1 (I know, I'm getting to this late...), which is the beginning of Down Syndrome Awareness Month.

I'm going to post something about Ds here every day this month, so stay tuned...

First, I want to encourage anyone/everyone who knows me to ask about John Michael and Down syndrome. Ask me what it's like... ask me about him and his abilities... it's OK. I LOVE to talk about him. And,... if you catch me on a bad day, that's OK, too. It's not all roses all the time (as with any child), but John Michael makes the world a better place and I wish more of my friends would feel more comfortable talking about it. I won't be offended, and I won't make you feel bad if you don't know "People First Language."

Let's talk...

Mr. January -- The Sisterhood 2012 Calendar is Here!!!

2011-09-29T14:15:00.000-07:00

I'm holding in my hands the product of what began as "wishful thinking"...

Earlier this year, I made a comment about how gorgeous our chromosomally-enhanced children are and that they would look great in a calendar.

Fast-forward many months and many hours of volunteer time from several moms, countless hours by Lisa Lindsey, our project manager, and Sharon and Scot Benton of Benton Photography, who generously donated their photography and design time... and we have a gorgeous, full-color, high quality 2012 calendar, hot off the presses! Each page is filled with beautiful images of our kids and meaningful quotes.

The Sisterhood is now over 50 moms strong and growing...

But, this calendar is more than eye candy for our families... we made this for the world to see our children as it sees all children, beautiful and very capable of doing many wonderful, and ordinary, things.

John Michael thoroughly enjoys looking at all his buddies, many of whom he knows by name.

I think I have to buy him his very own copy... he won't put it down!

He shares January and May with some very special friends. The calendar is truly magical and I love how it shows our kids' personalities and their beautiful faces. Just wait til you see those eyes!!!

Our cover girl, Charity, is peeking through JM's arms. She gazes right into the camera, drawing you in.

I think John Michael's in love... LOL.

If you'd like to have a copy for yourself or to buy for gifts, please email me: m.crumley at att dot net (or leave a comment on my blog with your contact info). These will make great holiday gifts for the new year!

Calendars can be purchased for $20, locally. Or, add $5 for shipping and handling.

All proceeds will be donated to our local Down Syndrome Information Alliance of the greater Sacramento area.

Potty Training 101

2011-09-21T09:21:00.000-07:00

STEP 1: Find a willing subject

STEP 2: Buy fun designs to encourage interest in "big boy underpants".
(Not necessary, but makes it fun)

STEP 3: Carefully try on.

Oh, wait, this, too, may be harder than it looks...

Back to STEP 1: Find a willing subject...

To be continued...

The Sisterhood -- revisited

2011-09-10T20:52:00.000-07:00

It's been a while since I've posted about The Sisterhood.

What started in May 2009, with only 4 moms (Lisa, Jen, Sheree, and me) with our 4 young children with Down syndrome (Sheridan, Joaquin, Gabby & John Michael), has grown exponentially in just over 2 years to 52 moms and 54 children with Down syndrome. Yes, two families have more than one child with Ds, because they adopted a child with Ds from eastern Europe. Several other families are either in the process of adopting or strongly considering it.

We are connected, most simply, because we all have a child or two with an extra copy of the 21st chromosome, or Trisomy 21. But, this is no ordinary Mom's group. Of course, we have mom's nights out, playdates, and support each other through IFSPs or IEPs (Individualized Education Plan), medical issues, milestones, therapies, or just general questions about raising a child with Ds. These are all very important and necessary functions of The Sisterhood.

But it's also more. Much, much more. These women have become sisters in the truest sense of the word. We know what it's like raising a child with special needs in a world that places very little value on their lives. Only 8 out 100 moms will choose to keep their baby with Ds when given a prenatal diagnosis. Many geneticists will offer to make you an appointment for termination as soon as you find out the baby you're carrying has Down syndrome. Some will pressure you until you finally tell them to back off. Now, a new, non-invasive blood test for early detection is becoming available. The company has the nerve to call it MaterniT21. It's a search and destroy tool before the mom even feels her baby kick. But, I'm getting off-topic... Back to the Sisters... Sometimes, when blood relatives are at a loss for words or are unable to embrace a new baby's diagnosis, these sisters are here to offer a hug to say it's going to be OK, offer an ear to listen, and sometimes a shoulder to cry on when no one else seems to understand. We love our kids to the moon and back, and most of the moms say they wouldn't take away the diagnosis if given a chance -- they wouldn't want to alter their child in any way. Others wonder what it would be like if their child didn't have Ds... would life be easier? And many wish that more people had the opportunity to raise a child with Ds because of how amazing they are and how it positively affects a family!

For me, personally, I never had a sister, and I only had a handful of close sister-like friendships in my life. Through these women, we've learned to embrace our children, advocate for them, share the tiniest milestones and celebrate the biggest victories, from rolling over, to sitting up, to taking the first step or saying their first word. All the same milestones that typically developing babies reach, but at a slower pace. The victory is extra sweet! Our online forum never goes a day without a post or two. Lately, our forum activity is on fire and the Sisters are bonding even deeper with each other! But, more on that in a minute...

We recently met for dinner, a movie and dessert. The film was The Help. Something about the honesty and bonding that took place in that film resonated with many of us. Nearly half of The Sisterhood was present, even Susan B. who had just delivered her 4th baby just 3 days beforehand came with Baby Christian. This is how important this mom's group is to many of us. Many of the Sisters had never formally met face to face. This was a perfect film for us and many new friendships were formed later over dessert. We learned that one of our sisters is an Air Force pilot! Among our group, we have a university professor, a couple attorneys, postal worker, State worker, hair stylist, teacher and many stay at home moms, to name a few. Several of our moms are expecting another child after having a child with Ds. You would be suprised at how many get asked, "Are you getting tested?" Some do, some don't. Our children with Ds haven't scared us away from embracing another child. What an amazing gift to the family!

Which now brings me to the latest... Sheree thought it would be fun to start a thread of "Confessions", where we confess something about ourselves that most people don't know or in some cases, haven't shared ever. What started as fun, has turned into a tome of funny tidbits about ourselves to the most deep, intense thought that we have never told anyone. We are all sworn to secrecy, so I won't go into details, but several have suggested it would make a great book. Perhaps... severely edited! LOL. And anonymous!! Not unlike the maids in The Help, telling their stories, anonymously. But, if you saw the movie... or read the book... the anonymity didn't last very long. Either way, the stories and nuggets of personal information these moms, these Sisters, have shared have made us laugh and cry. We've looked deep inside ourselves and have nodded and agreed with many of the thoughts shared on the page. If this ever gets published, well, I guess it'll be hard to be anonymous. Somehow the pieces will get put together. But what our Confessions show us, is that we're all human. We're all REAL women with real struggles living real lives, and the bond we've created through our writing has cemented our Sisterhood tighter than ever. Stronger than any sorority. Stronger than blood.

Wordless Wednesday -- Backyard Boys

2011-08-31T16:31:00.000-07:00

John Michael is quite a big helper these days and loves having jobs to do around the house and yard.

Watering the flowers is one of his favorite things to do, especially when the temperature begins to soar in Sacramento.

Luke is also learning...

John Michael taking a quick break to draw some circles...

"Dot Dot Dot..." just like big brother...

Finally, Luke perfecting his swagger :-)

It's gonna be OK...

2011-08-26T15:39:00.000-07:00

Some days, even for just a few minutes, I get to set aside the craziness of life with 5 kids literally running in 5 different directions, and just savor those sweet moments when all is calm, all is peaceful, and the love and brotherhood of my boys is cemented even further in stone.

Watching John Michael (3 1/2) and Luke (14 mos.) have a conversation--where few words are actually exchanged--is priceless.

Finally, John Michael turns to give me that sweet, affirmative smile, full of wisdom that, at least for now, all is OK. And I get to peek into the future of my sweet boys sharing and caring for one another. It's just enough to refresh my soul and remind me that this frantic phase we're in, too, shall pass. And I will look back at these photos with a mother's heart and remember only the good times...

So much change in 4 short days...

2011-08-09T23:03:00.000-07:00

Look at this boy! Full of confidence!

I spent Thursday through Sunday this past week at the National Down Syndrome Congress Convention in San Antonio, Texas, learning all kinds of great new things about raising a child with Ds (I'll share in an upcoming post). Nic and Anna also attended the Brother/Sister Conference, and came away with some new friends, both with and without Ds. I even overheard Nic and Anna talking over breakfast that they don't "see" Down syndrome in John Michael anymore. He's just John Michael... AWESOME!

Being away from Greta, John Michael and Luke for 4 days, I marveled at how much they'd changed in that short amount of time. Luke is mastering walking forwards, backwards, upside down (well, it seems so) and turning quickly. He's all over the place and into everything, emptying drawers, splashing in the toilet, removing things from the garbage, etc. I love how my husband stated emphatically, "I don't know how you get anything done!" Well, I'm no miracle worker, and some days are just plain hard right now... no Super Mom here, but I guess I mostly have it together :-) Greta also matured in those few days, and strategically killed me in a mean game of Checkers. That girl is tough!

John Michael also grew. Not taller (LOL), but in other ways... he is using more language expressions that show me his true personality...

Today, I built a simple Lego house. I showed it to him and he said, "Awesome, Mom!" and pumped his fist. I have NEVER seen him do that or say that! That was HUGE for me. He also says, "Woo hoo" when something goes well and his latest thing is, instead of saying "Yes", he's saying, "Mmmm hmmm," which is something I tend to say. It's so funny because it's so deliberate. He is also saying, "Yes, Mom," when I ask him to do something, or else he might say, "Sure." He wants to be independent, so I give him the benefit of the doubt many times and let him try on his own before helping. I love this! He also recently helped me make tuna salad for the first time.

Today, I fought back tears as I was sitting with the two little boys and John Michael was showing Luke how to use the shape sorter. "No, Luke. Here," he would say to show Luke where to put the square. John Michael knows simple shapes and names them, knows the basic colors, is matching objects in picture books, and is getting the concept of "bigger than". He also says his name is either "John Michael" or just "Michael". So cute! Luke, who is 14 months old, is also blossoming... I noticed today that he could do the ring stacker and started to pay attention to size. He effortlessly removes and puts on rings, slides shapes into the shape sorter (with help), and stacks blocks. I never noticed how quickly typically developing toddlers hit all these milestones that took John Michael extra time and patience. Tonight, Luke said "Up" and finished it with a cute little "p" sound. I really think John Michael is good for Luke, but also vice versa. As Luke develops and eventually surpasses John Michael in some areas, I know Luke will be a very good teacher for John Michael. Greta remains my little teaching superstar to John Michael and now to Luke. She's also becoming very good at redirecting John Michael when he gets on a "naughty streak". Next Monday, school starts for the girls... it will definitely be quieter around here, but that means more work for me, because I'm guessing these boys aren't going to let me sit and eat bon bons all day! Stay tuned!

Guest blogging at Narretto Family blog today

2011-08-05T08:28:00.000-07:00

I'm at the NDSC Convention in San Antonio. Hop on over to The Narretto Family blog to read about our adventures with Flat Stanley.

Wordless Wednesday -- St. Bernadette / Lourdes Grotto and Garden

2011-08-03T17:42:00.000-07:00

Every year, we try to spend our 4th of July in Mt. Shasta City, northern California, where my parents live and I went to middle and high school. When we're up there visiting, we always attend St. Anthony Catholic Church. We were excited to see their grotto, resembling the one at Lourdes, France, honoring Mary and St. Bernadette. John Michael LOVED being there. It was so peaceful with the running stream and fountains, native flowers and plants and lots of butterflies.

John Michael was enthralled with St. Bernadette...

Greta and John Michael reflecting on the handmade stepping stone...

Seems so many of our photos consist of John Michael running away...

Just us girls...

Doug and Luke... this is my kinda garden...

Greta trying to catch a swallowtail...

almost...

Inside the St. Anthony candle area...

The grotto...

He's Making a Difference!

2011-07-27T23:35:00.000-07:00

Every Wednesday morning, around 7:30 am, the garbage and recycling trucks blaze through our neighborhood. For John Michael, as with all our kids, this is an event you don't want to miss :-) Before the truck is even on our street, we hear a low rumbling sound from a block away, followed by the high-pitched screech of the brakes, and finally, the loud machine grabbing the can and lifting the garbage up and over the top. It's truly a magical sight to behold when you're a 3 year old boy!

And every Wednesday, Doug or I do our best to race John Michael out the front door to watch the garbage truck do its business and also to wave to the driver, who always waves and smiles back.

Today, Doug raced John Michael outside, but the truck had already passed. It was about 8 houses up the street when the truck came to an abrupt halt and started going in reverse... all the way to our house!

The driver told Doug that today was his last day on this route and he had hoped he would see them. He had something for John Michael.

The driver got out of his truck and handed John Michael a brand-new baseball cap from Sacramento County's Waste Management department. John Michael became shy, but took the hat and held on to it. Later on, inside, he modeled it for me. It has a green garbage truck embroidered on it. Very cool!

Doug shook his hand and thanked him. When Doug told me about the exchange, I was so touched by the gesture that I had tears. Obviously, John Michael made an impact on this man... a man we only saw once a week for a meer 20 seconds or so. But somehow, John Michael made a difference in this man's life and touched him in a way that prompted him to think of JM before he went on his last route passing by our house this morning. I don't know if it's because John Michael has Down syndrome. I'll never know. But I want the truck driver to know that he made a difference in our lives, too. And we're grateful.

On a final note -- I had a number of comments on my last blog post regarding having another child after having a child with Down syndrome. Thank you for your kind words. I know the struggle that exists in that decision, but if you look at the photo of my 3 boys, I'd say Luke fits in perfectly, don't you?

Eric Carle's art and John Michael update...

2011-07-16T11:48:00.000-07:00

Ever since I first saw Eric Carle's artwork, I immediately fell in love. The use of color, the patterns, the simplicity (and complexity) of his animals and people, his German heritage, his Euro-style images... What's not to love about his books? Last September, we even had a Brown Bear, Brown Bear book embellishing party at my house that was so much fun.

When John Michael was still doing Early Intervention, most of his therapists would often bring Eric Carle books to integrate into the therapies. His music therapist would bring the embellished Brown Bear, Brown Bear, What Do You See? for sensory stuff and colors, and his speech therapist used From Head to Toe by Eric Carle for moving your body and following directions.

Recently, I was inspired to create some hand-painted ceramics and I decided to focus on Eric Carle's The Very Hungry Caterpillar as my art inspiration.

I painted this plate, sort of as a snack plate for special occasions...

My good friend, Jen Sanchez, also painted an Eric Carle-style butterfly plate that is super cute!

Speaking of super-cute! I LOVE this new photo of John Michael. It shows such confidence and his huge, adorable smile. He is changing so much, it's hard to keep up. He is becoming a very caring, compassionate big brother to Luke, often putting his hand on Luke's back and saying, "Matter, Luke?" or "Happened, Luke?" when Luke is not happy (which isn't too often).

John Michael is also putting more words together, using some adjectives, and modifying verbs by telling me "Mom, swing higher!" I got so excited the first time he said "higher" as opposed to just saying "high". He's getting the subtle differences in language. He's also saying things like "big truck" as opposed to just "truck". New words that I haven't heard him say, like "door locked" or "big lake" are also more frequent. In the car, we listen to the Cookie Monster song (ad nauseum) on the Sesame Street CD. He tells me "Mom, music up!" Stinker wants it louder... so funny.

For Luke's 1st Birthday in early June, I also painted a special plate for all birthdays (below). I used a Sharpie and wrote Luke's name at the bottom and then in the dishwasher, it washed away, ready for the next birthday child. I plan to pull this out for many, many birthdays to come. Eric Carle's art is so perfectly imperfect and so colorful. How can you not love it?

You can sort of see Luke's name underneath one of his cupcakes :-)

Speaking of Luke...

I am in love with this boy!

He is the sweetest, cuddliest, kissy-est, happiest little guy EVER! And that says a lot, since all of my kids were happy babies and toddlers for the most part...

Why on earth did I ever worry about you so much? You fit right in, little man! And John Michael will be so much better for it.

I think many people are scared to have another child after they have a child with Down syndrome. A part of me can understand the fear... but you never know what you'll get with ANY child. But somehow, it all works out...

Beating Boredom with Barbie and G.I. Joe

2011-06-28T23:01:00.000-07:00

As much as I love summer vacation for the kids and a more relaxed schedule for all of us, I sometimes feel like their "Camp Director", making sure they are having fun, reading for book reports, doing their summer math packet, completing chores, or just finding something else to do besides watch DVR'd episodes of John Michael's favorite TV show, The Fresh Beat Band, over and over again.

Soaring temperatures in the 90's to low 100's can make the best laid plans start to wither as we give in to the cool, air conditioned living room beckoning us to stay put. Reflecting back on my childhood, I decided the kids would have to "rough it" by staying outside for longer than they planned. I set up the water play table and some blankets and let them decide what to do. Out of the blue, Anna asked, "Greta, do you want me to play Barbies with you?"

Greta was in heaven! I don't remember the last time Anna offered to play Barbies with her. It was so sweet to see them set up a Barbie grooming salon and play together. A few minutes later, John Michael came and sat beside them with G.I. Joe, twisting and contorting his body into moves a Cirque du Soleil acrobatist can only dream of.

Not to be left out, Luke joined in on the action, picking up the wild-haired Barbie with the floozy outfit.

John Michael liked her, too.

She looks like she's been around the block a few times... I'm thinking we need to "retire" her soon. LOL!

G.I. Joe doubled as a teether for Luke, thanks to his perfect, plastic hair, ginormous muscles and multi-jointed limbs. And for those 45 minutes they played together, it was pure heaven for me. No arguments, no complaints, just pure, spontaneous play.

Wordless Wednesday -- Brothers

2011-06-22T10:18:00.000-07:00

"Good Morning, Boys!"

I love how these two are playing together more and more.

John Michael genuinely seems to like Luke on most days. We still have occasions where he might push Luke over or do the "Mine. My turn. (Me) first" thing...

But, I'm happy to report... it's getting so much better. Look at these two! I love when they play side by side. Makes their mama happy :-)

Last day of preschool

2011-06-09T23:37:00.000-07:00

Look at this big boy! He has been in preschool for just over 6 months since he turned 3 and has loved every minute of it. I took this shot seconds before he bolted out the door to head to his last day of preschool for the season with Daddy.

When John Michael began preschool, he knew what colors were, but couldn't identify them consistently. For a while, everything was blue. Then, green, then yellow...

Yesterday, one of the classroom aides wrote in his journal that he properly handed her all the colors she asked for. Yay! I've noticed it, too, because he eats (gulp) Froot Loops some mornings and we make games out of it.

Another milestone is identifying numbers and counting. John Michael loves to count and sometimes counts to 10 perfectly and other times, skips a few numbers when counting items. He definitely has made a significant improvement here. He also recognizes that numbers are "numbers", but doesn't consistently identify them correctly. Same with letters. We're working on that, too. His shapes are pretty consistently correct.

JM is also using the potty quite often and rarely has a dirty diaper (poop) at home because he tells me he has to go and I take him to the potty. He wets his diaper more often than not, but he has had many successes at school and often will go when I ask him at home. It's coming along and he's definitely more aware of those bodily functions.

For PE, he has worked hard on jumping. I never realized how hard that was! He can sometimes jump about 1 inch off the ground with both feet, but lands very unsteadily. We'll just keep at it...same with trike pedaling.

I hope to receive a report from the school detailing how he has improved on his IEP goals, so for now, I'll rely on what his teacher and aide have told me. His teacher said he loves school and does very well. He started making friends and really plays with them as opposed to just next to them. He follows directions and stays put on his green square on the rainbow rug. He loves to be a bell ringer or weather boy or soap squirter... whatever the job he gets, he does it well.

Here are the bookmarks he gave to all his teachers, aides, and therapists. They LOVED it. We also gave a gift card to Borders Books to one teacher, gift card to Michaels Crafts to another, and some Bath and Body Works pocket hand sanitizers and sunflower seeds in a little pot to his aides.

Happy Summer!

Wordless Wednesday -- Mint Chip Heaven

2011-06-01T23:31:00.000-07:00

Need I say more?

Happy All the Time...

2011-05-27T14:12:00.000-07:00

Myth #1
People with Down syndrome are happy all the time.

John Michael and Luke are starting to mutually enjoy each others' company, which thrills me. To see these two together, as in the photo above, makes my heart sing with joy. And I wish it was like this all the time...

I love photography. Just as poetry captures the moment in writing, photography captures the moment visually. And while they say a picture is worth a thousand words... it's the moment before and after that remains unseen...

So, Myth #1 is that John Michael, and all people with Ds, is happy all the time.

NOT!

In the 20 minutes before this photo was taken, I had corrected John Michael a dozen or more times for patting Luke on the head a little too hard... Pulling Luke toward him too tight... For grabbing the sample of root beer float away from Luke that I was holding for him to taste... For biting my fingers (it was an accident, but his teeth are SHARP!) when I was doling out turkey burger patty samples... etc, etc...

Life, right now, is in constant motion... kinda like a carousel spinning out of control, and I can't find a way to jump off.

These two together are both wonderful and trouble at the same time. John Michael can go from total joy and fun to total fit for not getting his way in no time at all. He will say, "Mom! Mom!" until I say, "What?" and give him the answer he wants. If not, he'll keep repeating himself. I LOVE that he is talking so much... really talking... and then I feel terrible when he doesn't get the subleties of language when I say, "No, you can't play a game right now. Maybe later."

"Mom! Mom! Game. Cows."

"No, John Michael, no cow game right now."

"Mom! Mom!"

"No, John Michael, no game."

"Mom! Mom! Game. Cows."

Now, repeat 3 or 4 more times...

When he finally gives up, he cries.

Yes, it would be easier for me to give him the game, but I need to teach him that he doesn't get what he wants all the time (and I recently heard that cell phones are harmful to our kids and they shouldn't have them near their bodies too often).

Anyway, just wanted to bust that myth.

I'm glad it's not true... really.
I mean, I wouldn't want him just going through life without a vast array of feelings and experiences. I can say from experience, though, that when he's happy, he really is genuinely happy. And it's a wonderful thing. He's funny, too. I also love that he tells me he's happy.

"Mom! Happy."

"Yes, John Michael, happy. I'm happy you're happy. :-) "

And I think to myself... "Even though life is a challenge right now with you and Luke finding trouble together, I'm still very happy to be your mom, because the joy far outweighs anything else."

Three Small Words... One Giant Message!

2011-05-24T13:25:00.000-07:00

We interrupt this blog post with 3 small words from our sponsor...

That's right, Folks. John Michael wants to say,

"I. LOVE. YOU."

Now, go and have an awesome day!

Emerging sense of humor...

2011-05-10T16:06:00.000-07:00

With John Michael's growing spoken vocabulary of up to 4 word phrases, he is initiating conversation and really wanting to tell us things. Through all this, his sense of humor is also really shining through. It's so fun... this boy is seriously funny, and I'm thrilled that we're starting to see it.

Some mornings, when it's just too hard to wake him, I play a little game with him. First, I wake up his arms by rubbing them and saying, "Wake up, arms". Then we wake up his fingers, his legs, his toes, his tummy, his elbows, his nose, etc.. He LOVES this and before long is naming parts that I "forgot" to wake up.

Yesterday, I pretty much covered his whole body, including ears, hair, knees and back. I said, "John Michael, is there anything else we need to wake up?"

"Yes (thess)," he said, with a huge smile.

Lifting his arm high in the air, shouted, "Armpits!"

I laughed my head off.
His huge, wonderful smile, much like in the photo below, showed me he was ready to start the day.

I hope your Mother's Day was wonderful!

This was, by far, the best Mother's Day I've ever had! Doug made reservations for all of us and his mom to go to my favorite restaurant, Il Fornaio, for Mother's Day brunch. Such a treat! The kids thoroughly enjoyed being spoiled at a nicer restaurant (our standard is Old Spaghetti Factory).

John Michael and Greta shared a huge waffle and orange juice, and my veggie frittata with mushrooms and asparagus was out of this world!

Luke had his first taste of orange juice. I think the pucker tells everything LOL!

After brunch, we strolled around the Galleria for a couple hours, doing a little shopping (something else we rarely ever do!). So much fun!

Expressions and Manners

2011-05-01T21:47:00.000-07:00

John Michael is almost 3 1/2, and in the past few months, I've noticed many changes in him. So many, in fact, that I can only post a few areas at a time. One thing that has surprised me, and is very exciting, is his use of expressions in his speech.

Last week, while checking out this fire engine, I heard him describe it as "Cool!" or "Wow!" and tell me, "Look, Mom! Hole!" to describe where the hose fits on the truck.

Another favorite thing to say is, "Listen!" and point to his ear, or "Watch", or "C'mon, Mom!" to get me to actively participate in something he's doing. He's also claiming to hear a bear and tell me he's scared, or tell me, "Ouch! Hurts! Finger!" Three words together is becoming more common, too, as are words with more syllables. Yesterday, he said watermelon perfectly, broken up in to two words... "water melon".

One of his big brother Nic's first phrases when he was little was, "Sit down, Mom." I had to laugh when, the other day, John Michael told me, "Mom, sit!" and patted the carpet for me to come sit next to him. It was so cute and yet, kinda bossy, which also made me laugh. The most bossy, annoying thing he's saying lately is "Dwiet!" (quiet) whenever anyone, mostly Anna, is singing in the car. Of course, he got that one from me, because I got into the habit of telling Anna to be quiet whenever she would sing her solos from the musical Bye Bye Birdie at the top of her lungs in the kitchen. So, I'm paying for that now, because he even tells me to be quiet when I'm rehearsing!

Last week, out of the blue, he said, "Woo hoo!" when something went his way. It was so cute, I had to giggle. It's so cute to hear him use expressions and realize that he's using them exactly as they're intended. He really gets it... and he is starting to let me know.

John Michael has also shown us that he's pretty funny, too. If he could talk in complete sentences, I know he'd be telling us jokes non-stop. He's a prankster and loves to get us to laugh. Recently, he's started pretending to be different animals, like a snake or lion or tiger. His growls come from the bottom of his gut and you won't want to mess with him if he growls at you. But then, when you tell him, "Oh, John Michael, how scary!", he breaks into laughter as if to say, "Got you!" Which is another expression... he loves to say, "Got you!" and then tickle you. He's also recently shortened his "Thank you" to just "Thanks." I just love it!

"Mom! See! Eggs!"

Besides expressions, John Michael has good manners. When someone in our family sneezes, he's the first to say, "Bless you!"

Last week, a lady at church blew her nose and he turned around to say, "Bless you!" It was so sweet. Coughing, sneezing and nose blowing all get the same treatment around here. There's no shortage of blessings :-) He also gives us blessings on our forehead, which is very sweet, and shakes hands with others at the Sign of Peace. At Communion, he waits in line, walks up with his arms folded across his chest, receives a blessing, and walks back to our aisle. We used to have to either chase him or just hold him. Now, he gets back to where we were sitting.

He is also learning to pause to say grace before meals. He does his best to make the sign of the cross and then we all hold hands and say grace, followed by, "Amen!" He prefers to use utensils, uses a napkin to clean his mouth and chin when I remind him, and can eat an entire bowl of Froot Loops. OK, not something I'm proud of in a nutrional sense, but we actually work on colors as he's eating... and then he finishes up by drinking the milk from the bowl. Well, so not everything is considered "good manners", but we think it's great at home.

I have so much to write about... but want it to be relevant. Is there anything in particular I should post about?

I'd love to hear from you again... :-)

Behavior issues...

2011-04-28T17:57:00.000-07:00

For some time now, I've wondered if (when) we'd be faced with behavior issues with John Michael.
It's been one of those "fears of the unknown"... a potential side effect of him having Down syndrome.

In general, John Michael is as typical a boy as they come, and when he does get in trouble, I put him in time out. When he's sat still for a few minutes, usually on the floor away from us, I explain what he did, tell him it was wrong, and then he has to apologize to the person he hurt, which is usually Greta or Luke. Nothing extraordinary there, but that's how we handle it.

Having a baby brother (Luke is almost 11 months old now), has had both a positive and, at times, a negative effect on John Michael.

Here, John Michael was teaching Luke how to clap. Luke could already do it, but it was more about following the leader that made it so sweet. I could tell John Michael felt really big and proud that Luke was listening and following him.

But, I wouldn't be painting a true picture if I said life was always rosy with these two. "Double Trouble" is what I call them when they're getting into stuff. This next year will require extra doses of patience for sure!

There are plenty of times that John Michael shows his true stinker self and pokes, pushes, hits, or grabs a toy from Luke. Oh, yes, my sweet angel of a boy can be a real stinker! Here, I caught him red-handed as he poked Luke in the head! And, no, that's not a smile... he's clenching his jaw tight... Poor Luke!

And then there's the extra-rough LOVE he likes to show Luke. Luke was actually kissing John Michael's cheek here with his sloppy, wet open mouth kisses. So funny! That baby is going to grow up to be tough, that's for sure!

Makes me wonder if Luke is thinking...
"Where'd he go? One minute he's poking me, the next he loves me! Now he's gone..."

They even love to climb on BIG brother, Nic... a hulking nearly 6 ft tall, 13 year old who loves the "abuse."

Ultimately, John Michael is sweeter than he's not. His preschool teacher told me today that he doesn't have a mean bone in his body (I laughed...) and that he's a perfect child in class. Made me so happy, really. I'm thrilled that he's so good at school. I really think having a little brother is causing some jealousy and he's acting out since he can't properly express his feelings about it. Then, after a moment, his teacher added that the only issue she sees with John Michael is that he is super fast with markers and can mark up things faster than she can catch him. Other than that... he's a perfect angel.

She's right... a perfect angel... most of the time. :-)

Best. Thing. Ever.

2011-04-21T23:24:00.000-07:00

My Sad. post from January 6, 2011, seems like a distant memory. In just a few short months, John Michael has grown by leaps and bounds. It's so exciting how much he's changed!

And I know... I am seriously overdue for a post on all the words and phrases he's saying, how preschool is going, his behavior, his manners (he's very polite!), shapes and color identification, counting, singing, and gross and fine motor stuff. There's so much to write, I don't know where to begin!

But stay tuned... it's coming... and, here's why I'm seriously behind...

In the past 2 weeks, Luke (10 1/2 months old) has started crawling all over the house, waving hi and bye, pulling to stand, cruising, drinking from a sippy cup and straw, giving sloppy wet kisses and generally getting into all kinds of trouble. I often find myself wishing he'd slow down and enjoy the ride a bit, cuz my head is spinning from trying to keep up. Seriously. I rather prefer John Michael's pace at this point in my life...

I'm finding very little time to sit at the computer, so for tonight, I will leave you with this photo of John Michael (17 months) at Easter 2009, signing LOVE. Today, at age 3, he freely tells me he loves me, gives me hugs and kisses, and it's the best. thing. ever...

Wordless Wednesday -- Monkey Boy

2011-04-06T23:16:00.000-07:00

John Michael has turned into a serious monkey... climbing up ladders, running across bridges and flying down slides to start all over again...

There's no stopping him now!

Greta and John Michael enjoyed playing in the sun, but someone didn't like the sun in his eyes. ;-o

Treasure Hunt

2011-03-31T22:12:00.000-07:00

Henry David Thoreau once said, "We can never have enough of nature."

I couldn't agree more!

We're fortunate to have a nature trail right behind our house. When things get crazy in the house, we head to the trail and go on a treasure hunt.

Our region is famous for The Gold Rush of the 1850's. While we haven't struck gold, we do find our share of treasures now and again.

On this particular treasure hunt, John Michael scored a small, smooth river rock.

A crunchy, sycamore leaf.

A very cool, long stick that he used to smash his special leaf, and which doubled as a walking stick...

until he decided it was time to climb back on his trusty steed.

I think he's saying, "Well, are you going to push me, or what?"

Still Life Color Theory... or playing with your vegetables...

2011-03-29T17:10:00.000-07:00

I hadn't fully unloaded all my groceries, when John Michael's bus pulled up, dropping him off after a busy morning at preschool. I gave him a snack and sat down to chat with him.

We're still working on colors, so I pulled out a lime, a bell pepper, and a stalk of celery. I set it up as "Still Life" on a plate and it prompted a fun, 15 minute sensory learning opportunity.

First, we named the vegetables and noted they were all green (deen).

Next, we felt the veggies and talked about their different textures. The lime is bumpy, the pepper is smooth and the celery has lines. He was very into feeling the veggies and repeating their textures and names... bumpy lime, smooth pepper, etc. He was quite impressed with himself that he could stack the lime on the pepper.

Next, we took a whiff and smelled the veggies. I cut an x in the lime so he could get the full fragrance.

And finally, he decided to try the veggies, without prompting. I cut a tiny piece from the pepper and he put it on his tongue. He didn't get very far with the pepper or the lime, but he did crunch on the celery a few times. I don't think he really "liked" any of them very much, but at least he was open to trying.

So there you have it. A simple, impromptu lesson on colors, textures, tastes and smells. You don't need fancy kits, just make things interesting. One of the most important things I've learned about John Michael (and other kids with Ds) is that he learns best by seeing and doing and by repetition. See what you have in your environment, inside or out, and have fun learning something new...

I leave you with this short video clip. I'm so proud of my boy!

Baby Mine -- DSIA Calendar Photo Shoot

2011-03-20T13:47:00.000-07:00

A few months ago, I made a comment on Facebook to the moms in The Sisterhood that our kids (with Ds) are all so darned adorable that they should be in a calendar.

Guess what?

The moms in the Sisterhood started "going viral" on me, LOL, and the calendar idea took on a life of its own. A few of us moms recently got together to brainstorm how this could happen, and after a few phone calls and one "official" meeting with all of us and the photographer, the pieces fell into place.

After hearing our idea and mission, Sharon and Scot Benton of Studio B Photography offered their professional photography services gratis! They are both so talented... you should see Scot's underwater portraits, called Immersion Art!

John Michael had his photo session yesterday. YESTERDAY! Sharon and Scot already have put together this amazing montage of all our kids! Check it out!

John Michael makes his debut at 2:04 in the video, where he's catching a bubble. He was so excited! I just love this boy and love that he gets to grow up with a wonderful mix of typically developing kids and kids with Ds. And that's exactly how it should be :-)

The 2012 calendar, available through the Down Syndrome Information Alliance (DSIA) later this year, will be a welcome gift to new moms who have a baby with Down syndrome. Calendars will also be available for purchase. You know what you're getting for Christmas, right? LOL. Details later this year. This will make a fantastic Christmas or birthday gift or just because... The photos are amazing! Did I say that already?

Soaking up some Mother Nature...

2011-03-13T22:25:00.000-07:00

Last weekend, we enjoyed a sunny afternoon at Effie Yeaw Nature Center along the American River, where the deer, coyotes, and wild turkeys roam. These turkeys were HUGE!

Inside the Nature Center itself are rescued wild animals, such as an owl, a king snake, two garter snakes and a kestrel. You never know what else you might find there... Greta was mermerized by the deer crossing our path.

Along the trail and through the bushes, we saw one buck and more deer than we could count!

The park has many different walking paths amid the oaks that lead to the river or to a small pond.

John Michael loved the trails and seeing all the animals. He even found the perfect walking stick to navigate the way. Every boy needs a walking stick after all...

The girls had fun tossing small rocks in river, at first trying to make them skip, and then giving in to just tossing them in by the handful.

Even Luke enjoyed the sunshine and soaked up some Vitamin D.

The "pack" watched me with hungry eyes as I set up our picnic lunch.

Can't wait for more outdoor now that spring is almost here!

John Michael rockin' the sax

2011-03-02T14:21:00.000-08:00

So sorry the video quality is terrible because of the low light, but it was one of those moments that I just had to act quickly to capture it.

I love how John Michael is playing on the cork (no mouthpiece -- ick!), his fingers are moving, the strap is around his neck (saxes are heavy!) and he's making his own music. Then, out of the blue, he shouts, "Five!" Maybe he's playing "Take 5" by Dave Brubeck, or maybe he's counting down... cuz then he shouts, "Five! Nic!" He's totally tuned in!

And did you hear the ending sound on "Nic?" That's new and I'm thrilled! He doesn't usually say Nic -- it usually comes out as KeeKee. John Michael is starting to put some ending sounds on words, like "p", "s", and "k". I've heard a "t", too. He's been working on ending sounds in speech, so I'm glad to hear his progress!

I just love how John Michael loves music and points out whenever he hears a trumpet or saxophone on the radio. He plays our piano at home and loves to blow on the recorder and strum a guitar. His favorite band/TV show is The Fresh Beats to which he loves to sing and dance. I can totally see him playing in a band one day... I guess it's in his genes. :-)

Receiving the diagnosis...

2011-02-26T23:09:00.000-08:00

A mom just gave birth to her fourth baby. She sits on the hospital bed clutching her husband's hands as she struggles to take a breath. The air has literally been squeezed out of her. The doctor delivered not only the baby, but the words that would change their lives from that moment on...

"It looks like your baby has Down syndrome."

The doctor leaves quietly. The mom wails in agony over the words that cannot be taken back. It's too late. Never can she go back to the moment before when her baby "was perfect." Her mind races to the future and tries to picture herself and her child as an adult. Painful, preconceived notions permeate her thoughts... Will she be 80 years old and still have an adult "child" living at home? Will she and her husband never have those "golden years" together to travel and live life as they please, knowing they've raised wonderful, responsible children who are contributing to society and making a difference in the world? Will she become are part of "that" family that everyone talks about behind her back? Will her friends be embarrassed to be around her? Will her child ever be invited to birthday parties? The questions are screaming through her mind, through her soul, seeking solace from someone, anyone.

The future is too hard to predict. Too painful to project onto her newborn. She snaps back to this moment...

Her baby has been taken to the NICU. All she wants to do is hold him, but the tubes and wires attached to him make it impossible for the first few days. All she wants to do is to whisper through her soft tears that trickle down his precious cheeks that she is sorry. She is so sorry. What had she done that "made him that way?" She asks herself, could the doctors be wrong? What do they see that she doesn't see? How can they tell? He looks perfect to her, other than his purplish coloring and flaccid body. He looks perfect. He is perfect! Did they see all that hair? Did they hear him scream? Did they count all his fingers and toes and see that round belly? What's wrong with the doctors? Clearly, there's a huge mistake and they will tell her that it's all a mistake.

That message never comes. No one tells her it's a mistake.

Slowly, the fog lifts and it's morning. She makes her way to the NICU to bring her own milk to her precious baby. The pain is still there, but it's a new day. The nurses are friendly. The sun is bright outside. The mom and dad realize that their baby is the most important thing in the entire world and he is just as he was intended to be. He is perfect. They didn't do anything to cause him to have Down syndrome. In time, they will learn everything there is to know about Down syndrome; but for now, he is a perfect baby that needs their love, nourishment and to be cared for as any of their other babies. They will take it all one day at a time... learning as they go.

(John Michael turns 1 and tastes his first cake)

(Fab Four -- Sheridan, Gabby, JM & Joaquin,

May 2008)

This was me, just a little over 3 years ago.

John Michael's birth rocked our world in more ways than one. That extra chromosome caused many tears in the early days and weeks as we tried to understand the diagnosis. Every doctor appointment had me worried that we would hear some terrible news or some health issue that would take us by surprise. But as the weeks turned into months, we learned to navigate the new path we were on and we found that the Down syndrome part became less and less important. John Michael was just a baby and would be raised just like our other kids with the exception of some early intervention therapies where needed.

Fast forward to today --

(John Michael and Joaquin rocking out at Sofia's 2nd Birthday Tea Party)

If you read our blog regularly, you know what a ROCKstar John Michael is in our family. That boy has more friends at his age than my other kids combined. And he just got *another* birthday invitation in the mail today... we can hardly keep up. His teacher loves having him in the classroom and his classmates always shout, "Bye, John Michael" as he leaves. Older kids at my other kids' school make way to give him high fives, while their moms ask to "steal him away" at church or school functions. His social calendar can be hard to keep up with. I feel like I'm his "road manager" sometimes, making sure he looks his best and gets to where he needs to go :-) Someone needs to tell that new mom that it's going to be OK. Life will be great! You will be "that" family, but it won't be bad and your child will amaze you every step of the way. As a matter of fact, some of my closest and best friends are those moms who are blessed with a child with Ds.

(Having tea at Sofia's party last week)

Last week, an acquaintance of mine had her third baby and guess what? He has Down syndrome. I want so much to protect her from all the sad/negative feelings and emotions and help her get to "that happy place". I want to tell her how great her child will be and how she will be amazed and deeply in love and her son will do things like "typical" kids and... But, then I'm reminded that not everyone has the same preconceived ideas about Ds like I did. One of my new mom friends thoroughly embraced her baby's diagnosis in utero while another blogging friend struggled for 2 years before coming to terms with Ds. Whatever the healing process, I know that it's my calling to be there for new moms... to listen, to help them in whatever capacity they need, wherever they are... and to watch them get to the place where they know their baby is perfect, just the way they are. I can't wait!

(Just a regular kid and World's Best Brother)

Becoming more independent...

2011-02-16T13:55:00.000-08:00

Last week, I had our respite gal watch Luke so I could take John Michael to the park.

Just the two of us.

We had such a great time, soaking in the sunshine after weeks of rain and cold weather.

I was reminded at how important we are for each other. He still needs me to help him navigate the playground when he's unsure about some of the play equipment.

But he also showed me how independent he's become at preschool and that it's OK for me to let go of his hands and let him do it all by himself sometimes.

That look of pride in accomplishing something like walking across the wobbly bridge without holding on...

PRICELESS!

Of course, he still needs me... even if only to push him in the swing.

But other times, I'm learning to let go a bit and let him climb by himself until he reaches out his hands and says, "Hullp!"

This newfound independence is a joy to watch.
Another notch in the milestone belt.

Can't wait to see what lies ahead...

John Michael and Greta performing a Valentine's song for you

2011-02-14T08:59:00.000-08:00

Happy Valentine's Day from John Michael and Greta to you!

The Many Faces of John Michael

2011-02-11T16:03:00.000-08:00

Does this look like a sick boy?
He spent half the night throwing up, but apparently it was the huge pack of raisins he ate and not anything more. I kept him home from school just to be safe, but he's been perky and we had fun playing outside while Luke was taking a nap. He seems perfectly happy and healthy. Yay!

My iPhone doesn't do the best job with indoor, lowlight shots, but I had to capture my funny guy and his many expressions, all taken within a minute or two of each other.

This is just your typical John Michael, cutie patootie, with his new do.

"Mom! Theth!" He actually hit me in the nose with Luke's bottle cap. Nice aim, Buddy!

"John Michael, can you make a sad face?"
Love the lower lip! I also love that he understands different emotions.

We were having fun with this one. Can you pucker and say, "Ooooooooooooohhhh?"

And finally, my sweet John Michael with his special doggie... the one with the scraggly orange and yellow yarn bows that his Oma tied on for him. He is so addicted to this doggie and loves to carress his cheeks and hands with the yarn when he's trying to fall asleep. He also loves to tickle my face with it. I'm so glad Greta didn't mind letting John Michael latch onto her doggie and claim it as his own!

Love this boy! Happy Valentine's Weekend!

Explosion! (of milestones)

2011-02-02T21:42:00.000-08:00

I can't keep up anymore!

John Michael is EXPLODING with milestones lately, and I can't keep up with them! And while January is usually my slowest blogging month after the December busy-ness, I promise to post more regularly again...

One milestone is that John Michael is starting to tell me when he has to poop and has successfully gone two times now, and usually sits for 5 minutes at a time, even if nothing happens. He often tells me he has to go "pobby", walks to the bathroom, turns on the light and says, "Light!" and opens the toilet lid. He tries to pull down his pants, although it's still something he's working on. But if I don't help him quick enough, he easily finds other things to occupy his time (eg, unrolling the toilet paper...)

Some other things that used to be torture, have become more routine and easy to manage.

Like, brushing teeth.

A year ago, I lamented that he screamed his head off every time we tried to brush his teeth. He now loves to brush his teeth, even if it's for a short 30 seconds or so. He smiles while brushing, then lets Doug or I finish with a thorough top and bottom brushing. When he's finished, he makes sure to show off his fresh, clean breath. So cute! (This is also reinforced daily at preschool when the kids all brush their teeth after breakfast. He's in a full inclusion Head Start program that offers breakfast and lunch and the kids learn about and practice good hygiene.)

Ta Da!

John Michael Grooving to the Fresh Beats

2011-01-22T16:53:00.000-08:00

John Michael's favorite TV show is the Fresh Beat Band or "Beh Bee!" as he likes to say.

Thank goodness we have the shows recorded, since it's his #1 request.

Here's the show's opening number and JM likes to sing and dance along. Turn up the volume so you can hear the TV music. Even Nic and Luke have a cameo appearance at the end...

LOVE my boys!

JM playing catch with Mom

2011-01-22T16:29:00.000-08:00

Here's a favorite activity of JM's -- playing catch with me. And he's got a really good arm, too! Of course, it's hard to do when you're trying to hold a camera steady, but you get the idea. Love his smile :-)

Foggy Day, Fun Day...

2011-01-17T12:08:00.000-08:00

Once again, we're socked in the valley fog that has the ability to quickly turn our cheery dispositions into melancholy and somber moods. I KNOW if I lived in a rainy climate, I'd be investing in sky lights, solar light tubes and daylight bulbs. I NEED the sun. Hopefully, by this afternoon, the fog will lift and within moments of seeing and feeling the sun, it will be an instant mood-fixer. If not, I'll have to turn on the Beatles... "Here Comes the Sun..." That might help a bit!

But for now, I'm making the most of having the kids home on MLK, Jr Day. Greta, full of her red-headed energy, is helping entertain John Michael in ways I never could've in my 40+ years. She has more energy and enthusiasm than a jet engine. Right now they're playing catch with large balloons and laughing...

Earlier, though, which prompted this new post, John Michael came to find me changing Luke's diaper to show me his latest creation.

"MOM!"

and he lifts up his Lego creation to show me.

"BOY!"

Me: "Wow, John Michael, I love it! You have a boy and Kai Lan, and a baby cow"

"Yeah!"

(I write with exclamations, because he is literally so excited to show me.)

"Very cool, John Michael, I'm so proud of you!"

BIG grins! I run to get my iPhone to snap a shot.

For the longest time, he would only build towers with Legos and is starting to use other pieces.

So we have a boy, a girl and a cow. I guess we'll have a story to make up about that, later.

The fun didn't stop there... John Michael climbed up on Greta's bed and started playing with her Dora glasses, Disney Princess snow hat and cute scarf from her Kindergarten teacher. I'll admit I helped with the glasses since he couldn't get them to stay on. But check out my silly guy! Love his smile!

Finally, Greta and John Michael decided they were taking their babies on a trip to Hawaii. They grabbed the babies, climbed up on Anna's desk chair together, and were off on their airplane to Hawaii.

I'm envious! I don't think I had such a vivid, playful imagination as a child. Maybe I did. But I love how these two have so much fun pretending to go places and take on different roles for the sake of fun.

As I sign off, I just saw John Michael running after Greta down the hall with Anna's 1st Communion purse on his arm while holding a baby in the other. They don't always play dress-up and girl stuff... matter of fact, JM's most favorite thing to do is to play catch or kick balls and to play with his Matchbox cars. But having two imaginative sisters keeps him well-rounded.

Can't wait to see how he and Luke play together.

I think this will be a fun year...

Sad.

2011-01-06T16:05:00.000-08:00

Photo by Tracy Grace Photography (dot com)

I'm frozen.

I can do nothing until this post comes out of my head, because it keeps bobbing around my brain and the more I think about it, the more thoughts come flying toward it... this blob of information, thoughts, feelings, that need to get purged onto my blog.

I'm sad. There, I said it again... Sad, because John Michael has so much to say, and is really trying to say words to communicate, and sometimes I just don't get it.

Here's a recent conversation between John Michael and myself from last night...

"Mom!"
"Yes?"
"Mom!"
"Yes, John Michael?"
"neh neh"
"A horse? Yes, a horse says "nay nay"".
He throws his head back and says, "NO!"
"Mom! Mom!"
"Yes, John Michael, what is it, Son?"
"neh neh!"
"Do you mean airplane, like you saw in the book?"
"NO!" [tears are forming]
"Can you show me or point?"
"Awh!" and he walks away frustrated.

We both end up frustrated, because he wants to tell me something on his mind, and it's not coming out in a way I understand.

Doug feels the same way.

I know it's a phase, but it could be a long phase... My friends tell me that speech in kids with Ds often takes off around 5 to 7 years of age. Well, I understand, rationally, but it's hard sometimes when you can't understand your kid!

On a positive note, John Michael has many, many (150 or so) words that I understand and that's EXCELLENT! He understands most of what I say and usually answers with one to three words in reply. It's those times in the car or at home when he has something on his mind and can't put the words together clearly. So last night as I tucked him into bed, I talked to him assuming he could understand every. single. word. I. was. saying.

I stroked his cheek with my fingers and, choking back tears, told him...

"John Michael... Mommy loves you very much and I'm so proud of you. I know you can understand so much of what I say to you, so I want you to know that I understand that you get sad when Mommy doesn't understand a word or something you're trying to tell me. I'm sad, too, and I know it's hard to say the words sometimes. But we'll just keep trying and we'll get it. OK?"

I left the room crying, just as I am right now... Softly, but the pain is there.

I am so darned proud of this boy and sometimes it pains me to know how much he will struggle in life. Luke is a constant reminder of how a typical baby develops and hits his milestones without even blinking twice. So, it's just a short phase I'm in.

Doug and I talked to his speech therapist today and she said that JM being frustrated is a good sign. I tell you, that actually lifted my spirit hearing that. She said that it shows that he has a desire to communicate and just isn't processing the words quickly enough. She is going to start using a PECS (Picture Exchange Communication System) aid to help bridge the gap for a bit. It's a board of pictures of words he's familiar with and he can point to the picture, for example, if he's trying to say airplane and I'm just not getting it. He occasionally uses signs, but has really dropped his signs. He does remember them, though, because he will say the word when I sign something to him.

Finally, the photo, above, really hit me emotionally last night. When I first saw it, I thought it was cute to see the kids running in circles around Doug and I. That's really how we feel many days at this stage in our family life. But last night, I saw the photo in a new way... a way that made me cry again. I saw the three older kids running so fast that their bodies are blurred, and there is John Michael, in focus, not able to keep up... being "slow". Today, seeing it again with new eyes, and reflecting on it more, I think I prefer John Michael's pace... bringing us into the slower lane, enjoying the small things in life and living in focus...

Then, out of the blue, John Michael says to all of us in the car... "love you, kee kee (Nic)" "love you, deddah" "love you, nanna" "love you, Looo" "love you, Mom" "love you, Dadda" and all the pain and tears lift and it's a beautiful day with our very sweet, beautiful boy.

Best Toy Ever...

2010-12-27T11:24:00.000-08:00

When Nicolas found out John Michael had Down syndrome, he was most concerned about John Michael not being able to play Legos, ball, trains, etc, with him.

Looking back, we didn't know how John Michael would develop. The medical information available suggested he would be delayed at everything and that he would have all kinds of medical issues. John Michael has taught us to be patient and that he would do all the things Nic was hoping he'd do, just at his own pace.

Fast forward 3 years...

in previous posts, I've written about how John Michael loves to play with balls, kicking, throwing and learning to "theth" (catch). I've also posted on how he loves to play with Legos and build towers and he's starting to build out a bit, too, not just stacking.

This year...

we bought John Michael a train table (not that our living room has room for it!) and brought down the track and trains, mostly Thomas the Tank Engine and friends, from the attic that Nicolas and Anna used to play with.

I can't believe how excited he is -- it's hard to pry him away from his train table! He is having a blast watching the two motorized engines go round and round and attaching extra engines or tenders until there are so many that the engine stalls out or crashes. We also have some cool bridges, tunnels, and accessories to add to the fun. I really shouldn't have bought him anything else. I think this is it for him.

Nic just got home and is now playing with him. I love how this one thing will give them yet one more fun thing to do together. One more reminder that our kids with Down syndrome are "More Alike Than Different."

The Gift of Time

2010-12-22T16:56:00.000-08:00

Christmas is almost here!

It's a time of joy and yet, every year, I get trapped by the culture and try hard to pull myself out of the trap before we celebrate the blessed birth of our lord, Jesus Christ.

20 more days til Christmas, 8 more days til Christmas, buy 1 get one free, best deal of the season, don't miss out, 4 days til Christmas, free express shipping with a purchase of $100 or more, 50% from 12am to 6am...

STOP IT ALREADY!

Who doesn't feel stress and pressure to buy the perfect gift, decorate the perfect tree, wrap the gifts as if Martha Stewart was their personal coach, and bake 6 dozen different Christmas cookies to give to all our friends? Then there's the pressure to buy gifts for everyone, including the mailman, newspaper delivery lady, hair stylist, teachers, cleaning people, etc, etc etc...

I AM NOT A SCROOGE!

But, it can be overwhelming even to those of us who try to be somewhat "counter-cultural" during Christmas overdrive. It sure doesn't seem like our economy is still sluggish after the 2007 crash when I see how many people are on the roads heading to the malls and standing in long lines to buy STUFF.

So yesterday we SLOWED DOWN... and I gave the kids

"THE GIFT OF TIME..."

my time.

No TV.

No Internet/Facebook/Email checking.

Just my time and look what happened?

I taught the girls how to make sugar cookies, roll out dough, cut out with cookie cutters, bake until lightly golden, and make some killer tie-dye style icing for the girls to get creative.

This has been one of the best 2 hours I've spent all season.

Earlier the same day, I had a little tea party with John Michael and Greta.

and watching Greta teach John Michael how to be a sweet Joseph. I had to laugh... they used the arm covers off of my couch and recliner for head pieces... So creative and so sweet. This is what it's about... nevermind the mess that they made. This is what it's all about.

Today, I spent 2 1/2 hours with Nic... shopping, going to lunch, and the library together. It really has been good for us to ssssssllllllllllllllloooooooooooooowwwwwwwwww down.

Even if you only have a small amount of time to give, kids will thrive when they have your uninterrupted attention.

NO CELL PHONES, NO CHECKING EMAIL, NO FACEBOOK, and NO TEXTING...

Try it... you might like it :-)

Merry Christmas from John Michael and his family...

PEACE!

Crumley Photo Book 2010 -- 200th POST!!!

2010-12-12T23:39:00.001-08:00

Click here to view this photo book larger

I can hardly believe it! This is my 200th post since I started blogging back in the summer of 2008. A lot has changed since then... Monkey Musings now has 100 followers (I LOVE when you leave comment love!), we added a new family member, Luke, last June, John Michael started preschool the first week of December, and my 13 year old is 3 inches taller than me. Craziness!

Thank you for making this ride more fun by reading and commenting. If you do have a child with Down syndrome, then I pray my words have somehow helped you, encouraged you, inspired you, or affirmed how awesome our kids with Ds are. If you don't have a child or loved one with Down syndrome, then I hope my words have helped to educate you. I appreciate everyone who takes the time to read our blog, and especially to those who let me know they're out there. I count so many of my blogging, cyber buddies as friends. I hope to meet many of you at the NDSC Convention in San Antonio, TX in 2011. I can't wait! Until then, have a blessed Christmas and a grace-filled, peaceful New Year!

God Bless!

First week of preschool...

2010-12-09T14:41:00.000-08:00

My big 3 year old ready for his first day of preschool!

I felt so bad that I didn't have a "proper" backpack for him (I ordered one online) so he had this huge backpack strapped on with nothing but 7 diapers and a pack of wipes in it and the poor boy could hardly hold it up. It was pretty funny. He was determined to carry it, though.

Daddy saying, "Bye Bye." I can only imagine what was going through his mind at that point...

His teacher said he had a good first day. There were some tears off and on, which is to be expected, but he played well with other kids, sat on the rug and listened, participated in activities, had lunch with the kids and even sat on the potty. He was very happy to see me and Luke, and promptly fell asleep in the car.

I'm sure it's been a little stressful for John Michael with this huge change in his routine, meeting new faces and being away from home for 3 1/2 hours each morning.

But, it's also been stressful for me.

John Michael is my 4th child to go off to preschool, but my first to not be able to communicate what he did at school, what he ate, what he played with, who his friends are, etc. I can ask him if he learned about dinosaurs and he'd probably say "Yah" even if he didn't. If you hadn't guessed yet, I am a very involved mom... I care about what my kids are learning and doing in school and want to help reinforce it at home. So when a friend asked me on Facebook what was his favorite thing to do at preschool, I got sad. I didn't know... plus he's been taking a bus home this week Monday through Wednesday, so I didn't have that communication with the teacher.

Fast forward one week. Today was Day 5 of preschool. I picked him up so I could talk to the teacher. Teacher Karen thanked me for letting him come to her class. She said he's doing very well and he's such a joy to have! She sent me a photo on Wednesday of John Michael playing with a little girl he calls "Lula" and another boy who is visually impaired. The three of them were playing with blocks at a table... that is so cool! I think "Lula" will take good care of him... like a sister.

At pickup, I also asked the teacher what he likes to do and she said play with blocks, Playdough (gingerbread scented dough this week), and play with the dollhouse (Greta's influence on him). His speech teacher loves him and said he's doing very well. She said he talks about his baby brother, Luke, a lot. He's putting the ending consonant on "boat" which is also good. And she's impressed by how well he sits on his special spot on the rug and listens. She's going to implement a Picture Exchange Communication System (PECS) for him to help with his communication. Sometimes, a picture is worth... well, you know... It may even prompt him to say the word. He also had adaptive PE today and Tuesday. I haven't met the teacher yet, but I heard that John Michael had fun jumping today.

When I walked in the door today, he was with a group of kids talking with the teacher. He saw me, shouted "Mom!" and pointed and ran as fast as he could to give me a hug. It was so sweet. You should see him run... it's still pretty awkward and you think he's going to fall any second, but he didn't. I go t the hug and he turned and went right back to the kids. Then he showed me "The Snowman" book that he likes. It's without words, which are pretty cool books where you make up the story. We'll have to check that out at the library. Needless to say, he's had a great first week.

John Michael's first official preschool art project. I'm sure it's the first of many, many projects to come and I LOVE IT!

(On a side note... it's not been totally stressful for me... I've gotten most of my Christmas shopping done this week since I only have Luke with me now. This is definitely one of the benefits of preschool, too!!!)

Being thankful...

2010-11-30T15:23:00.000-08:00

I hope you enjoyed your Thanksgiving with family and friends. This was the first year that our family celebrated Thanksgiving alone, just the seven of us. While we missed being with our extended family, there were pluses to staying home this year as well, such as taking a nice long walk while the turkey was cooking and not traveling in the cold weather with a baby and 4 other kids packed like sardines in our Honda minivan.

Anna (11) and Greta (5 1/2) spent most of Thanksgiving morning coloring and making homemade decorations for the house and table. I love the creativity that flows from Anna. Greta seems to be following in big sister's footsteps, too...

Anna's list of what The Crumley Family is thankful for...

God, Diversity, Birthday, Love, Courage, Peace, Plants, Hope, Life, Warm Bed, Animals, Loving Family, Faith, A House, Friends, Free Will

A simple reminder... this should be our mantra every day of the year...

She also decided to translate "Thanksgiving" into 5 different languages... Italian, German, Spanish, Romanian and French.

A native American girl holds slips of paper of what we're thankful for. We had fun with this. Luke was thankful for warm milk and John Michael's scribbles indicated he was thankful for EVERYthing.

Finally, she made placecards for the dinner table, which we decorated nicely with candles, gold chargers and glass plates. It was a Thanksgiving to remember.

Finally, we gave thanks that John Michael came home from the hospital at 8 days old on Thanksgiving Day 2007. That was the best Thanksgiving gift ever. Our Thanksgiving baby is now 3 and starting preschool this week. I can't believe it!!!

Peace and Blessings... from our home to yours...

John Michael's first IEP... and turning 3!!!

2010-11-19T13:55:00.000-08:00

Behold... John Michael at age 3!

Happy 3rd Birthday

to my most cuddly, loving, good-natured, awesome

Super Chromo Boy!

This boy seriously ROCKS that extra chromosome!

So much has happened since my last blog post!

On Monday, November 8th, we had John Michael's first IEP team meeting. I had spent months preparing for it by going to an IEP training seminar, transition workshop, one-on-one parent/peer counseling for information and ideas, got help and tips from my blogging friends, visited some preschool sites and prayed for a good fit for him.

Backing up a bit, the transition meeting in September was the first step and went well. We had his therapists (ST, OT, and teacher), service coordinator, and school district representative all at our house. I served Starbucks scones and coffee (not required, but just nice...) and I showed a slide show I'd made of John Michael's first 3 years. I'd also prepared a parent report with photos, my thoughts on John Michael and what he means to our family, a run-down on his strengths and abilities, areas where I have concerns and he needs help, and finally, what I want for John Michael in the future. It was a lengthy 5 or 6 pages long. Doug also wrote a very meaningful letter (one-page... guys can say it in less words :-) ). The letter and parent report were to help in the fact that decisions were being made about John Michael and the school district hadn't had the benefit of really knowing him.

Shortly after the transition meeting, JM's assessments were scheduled at a local preschool site where I met with the inclusion teacher, speech therapist, adaptive PE teacher and school psychologist. I was asked many, many questions about John Michael while he had his play-based assessments in the same room. He did very well. You never know how your child will react in a new environment with new faces, but he shined :-)

A couple weeks before the IEP meeting, JM and I were given the opportunity to visit the 3 school sites that had full inclusion classrooms. The classes all offer breakfast in the morning and lunch before they go home, served "family-style" where they learn to socialize around the "dinner table". Each of the classes has 20 students, 5 of whom have some sort of special need and are mainstreamed into the class. Each of the sites had at least one child with Ds, one actually had 3 kids, 2 of whom we knew!

The 2nd school site we visited is where we both felt the most comfortable. He had a great time on the playground, he painted a masterpiece for me, sat down for storytime, and met a little girl who I know will take good care of him at school. She reminded me of a younger Greta, who was very nurturing to John Michael. I love that! We also really liked the speech therapist at that site and the adaptive PE teacher is a man, which will be a nice change for him.

The actual IEP team meeting went very smoothly, although it lasted a solid 3 hours! My dear friend, Lisa Lindsey (Sheridan's mom), was our most awesome note-taker, typing away on her laptop while the IEP was going. Besides Doug, Lisa and I, others in attendance were the inclusion teacher, preschool teacher, speech therapist of new school, adaptive PE teacher, school psychologist, our infant program speech therapist, service coordinator and school district representative.

I brought homemade cranberry bread and pumpkin bread and a box of Starbucks coffee. :-)

Again, not necessary, but very much appreciated.

Each person who did an assessment on John Michael gave their report (which I'd requested and received a few days prior to the IEP meeting to be prepared...)

John Michael was recommended for a full inclusion program.

The following are John Michael’s IEP Goals for November 2010- November 2011" (I am including them since many of our buddies are approaching 3 and having their first IEPs. Keep in mind that IEPs are "Individual" for reason and these particular goals are written specifically for John Michael. This is just in case anyone would like to see how they are written or for some ideas. Each goal is broken down into two smaller steps which I didn't include here. If he meets his goals before next year, new goals will be written. Words in italics are my comments.)

Self-Help: Within one year, given a regular toileting schedule, student will pull down and up his pants, sit on the toilet for 1 minute 80% of the time. He already can sit on the toilet for 1 minute, but will need help with pulling down and up pants.

School Behavior: Within 1 year, given materials and a teacher directive, student will use the materials appropriately and stay at the activity for 6 to 7 minutes 80% of the time. He is interested in many different activities – this addresses focus.

Pre-Academic: Within 1 year, given manipulatives and a directive, student will give “just one” “one more” “two” and “all” 80% of the time. Right now he doesn’t get the concept of “one” and will give you “all” when asked for “one” of something.

Pre-Academic #2: Within one year, given Playdough, student will roll a ball, a snake and cut out a cookie cutter 80% of the time. Pre-fine motor, builds muscles and strength in hands and fingers.

Expressive Communication: Given objects, pictures, or situations, John Michael will produce 2-word sentences with appropriate use of simple pronouns, verbs, and prepositions 80% of the time. He speaks up to 4 word combinations with minimal use of pronouns, verbs, and prepositions. Two nights ago, he said, "Where are you, Mom?" (prompted by Anna) and I totally understood him!

Receptive Comprehension: Given minimal prompting from staff with an auditory directive with objects or pictures, JM will follow a 2-step directive accurately 80% of the time. He currently follows 1-step directives and retains one essential element in a sentence.

Articulation: Given visual and auditory stimulation, JM will produce initial and final consonants in CVC combinations accurately 80% of the time. He usually drops the ending consonant and produces a CV or CVCV sound combination.

Gross Motor: Within one year given practice sessions involving a tricycle, JM will be able to pedal a tricycle 5 feet without assistance for 3 consecutive sessions. JM can put two feet on pedals.

Gross Motor #2: Within one year given activities relating to jumping, JM will be able to jump 5 consecutive times on the mini-jogger with spotting from the teacher 80% of the time. JM attempts to jump but only lifts one foot at a time.

This post took more brain cells than I can spare right now, so you can see why I haven't kept up with my blog!

Last Sunday, John Michael turned 3 and we celebrated very simply by having a birthday donut. He blew out 2 of 3 candles and we spent the day playing and having our Christmas photos taken... So, I"ll leave you with this image of my handsome 3 year old!

Feel free to email me if you have any questions about our IEP.

IEP Goal: Sit on toilet for 1 minute

2010-11-10T19:28:00.000-08:00

This work of art is titled: "It's a Guy Thing..."
Photograph by John Michael's Daddy

Two days ago, we had John Michael's IEP team meeting. It went very smoothly and after 3 solid hours, we both signed the IEP and the wheels have been set in motion. I promise I will blog about the IEP details very soon, but for now... just wanted to share that he's already working on one of his IEP goals...

Sit on toilet for 1 minute.

Done.

John Michael's interest in sitting on the toilet began last night, prompted by him lifting the toilet lid and pulling up his shirt. Up to now, he has cried and fussed at the slighest suggestion of sitting on the big potty. I asked if he wanted to take off his diaper and he said, "yes." I propped him up and he sat for about 15 seconds. Twice today he did the same and each time he sat a little longer, the last time about a minute.

This evening he tried again... this time with Daddy. He still hasn't actually "gone" on the potty, but he sat for over a minute, enjoying his book and Binky. I thought it was sweet that the book he chose is called My Friend Has Down Syndrome. It's about some school-aged kids going to camp and one girl becomes friends with a girl who has Ds. We enjoy reading it along with our other books on kids who have Ds.

So there you have it... we have begun potty training... Stay tuned...

I'm going blind... to Ds.

2010-11-03T23:04:00.000-07:00

OK, not in a literal sense. But, figuratively speaking, I'm becoming blind to recognizing the features of Down syndrome in children... at least in photos. Let me try to explain...

(John Michael and Luke on a walk with Mom to Starbucks!)

Back in June, I posted about "Seeing Down syndrome" in John Michael. I do recognize he has features that are common in some people with Ds, but more than anything, I just see John Michael. It's the same with his local buddies as well as his cyber buddies that we've only come to know via blogs. I honestly don't see Ds in them. I mean, their features don't jump out at me and say, "Look, I have Ds." I don't mean to offend anyone here, and I realize I'm writing this in a totally awkward way that's not flowing, but here's what I mean...

Yesterday, Greta brought home a little booklet about how God made us all and the image shows a girl at the bottom of the page holding out her arms as if she's lifting the world and on the outside edge of the world are many different children from various parts of the world. Greta (age 5) says to me, "Mom, that girl has Down syndrome like John Michael." I looked at the girl and asked Greta to explain, because I didn't "see it". She said the girl's eyes were like John Michael's (meaning almond-shaped and the epicanthal folds under her eyes were noticeable). I still wasn't sure. I saw a beautiful, blond-haired girl with blue eyes and a big smile. I needed to get another opinion. I asked Anna, my 11 year old. "Oh, yeah, Mom, she totally has Ds." Really? And, finally, my husband, Doug, chimed in that he could tell by her "square smile" and her small thumbs (her fingers weren't visible).

(My view of JM on the way home... LOVE THAT SMILE!)

That whole exchange really baffled me. It made me realize that I'm starting to go blind to differences and see the child for who they are, regardless of diagnosis. Maybe if I'd met the girl in person I would have noticed that she had Ds because of her speech or maybe the way she moved, I don't know... maybe not. Anyway, I just wanted to share that. Just curious, has anyone else had a similar experience?

He's gonna be just fine... Looking at preschools...

2010-10-27T14:48:00.000-07:00

John Michael will be 3 in a few weeks. We've been checking out a couple different preschool options in our school district last week and this week. It's been very helpful for me to picture him in a full inclusion classroom with 15 typically developing kids and 5 kids with special needs. Both classes I've seen each have a little girl with Down syndrome and some other kids with special needs.

On one playground, there were many trikes like the one above. John Michael can't yet pedal, but he's trying. But the coolest thing was that a few trikes had an extra seat on the back, like a fixed trailer, and one little boy gave John Michael a ride all around the playground. It made me so happy to see the kids fully included and accepted. A win-win for both sides.

The second school I visited had a really neat, small playground. John Michael really blossomed yesterday. When the teacher turned on the slippery fish song, he tried to keep up. It went too fast, but he did his best. He also liked sitting next to the kids and interacting with them.

I had a chance to talk with both teachers while the kids were on the playground. Both have backgrounds in special ed, both thought he was really cute and were very encouraging.

John Michael's IEP meeting is in 2 weeks. We visit one more school tomorrow. Unfortunately, all the school options are a good 20 minutes away. While I'd envisioned a private preschool setting for John Michael where his 3 older sibs went, I think this is a great start for him since he will need extra help at first. He will also have speech and adaptive PE onsight. Adaptive PE will help with stair climbing and building strength for trike riding, but doesn't take away from playing with the other kids on the playground. I'm starting to feel a bit more at ease with the whole school thing.

I'd love to hear other peoples' experiences with starting preschool for their child with Ds.

Uh oh, Oh no, YAY!

2010-10-19T10:25:00.000-07:00

John Michael's speech continues to take off... branching into 2 word and sometimes 3 word phrases, like "Hi, Luke", "blue block" or "love you". He is a parrot and often copies the last word in a sentence or picks up expressions.

This morning, while feeding Luke, I quietly observed John Michael building towers with Legos. He built the tower by himself (not the bottom, larger structure) and was quite chatty. He would say, "Yay" when a block or section fit. He'd say, "Oh, no" or "Uh oh" when blocks were tipping or fall off and would say, "fit" when the blocks didn't fit well.

Here he's standing proud of his accomplishment. That was as high as he could reach without the whole thing falling over. He stayed with this activity for about 15 minutes, which is pretty good for self-directed play. If Greta were here, they probably would've played for about 30 minutes.

Eventually, he branched off to playing with the Lego animals, cars, trucks and people. But the whole time, I noticed how his expressive language is growing.

Some other expressions he frequently uses are: "Whoa!" for when he catches himself falling or bumping into something; "Oops! (soop)" for when something goes wrong; "Bonk" for when he bonks into something; "Wow!" when something's exciting or cool; and, "Ow!" for when he's hurt. This has really come in handy lately since he can now show me where he is hurt. It used to be a guessing game with lots of tears.

This was taken last week and he built it all on his own.

I just love Legos for all the things you can do with them.

ArtBeast, New Friends and Spaghetti Factory, OH MY!!

2010-10-12T15:52:00.000-07:00

Last Friday, a blogging buddy, Darlena, came up to Sacramento to meet some of us. I've been following Darlena's blog for over a year. She has a beautiful family, but we especially love reading about her darling son, Brayden.

Isn't he a cutie?!?!

We first met at the ever-cool ArtBeast for some music, art and creative play. John Michael looked quite at home on the drums.

A John Michael masterpiece.
We love his painting so much that Doug wants to make greeting cards out of it. :-)

John Michael loves to give his friends hugs. Miss Gabby doesn't seem to mind. Isn't she precious?!?!

At Spaghetti Factory, John Michael and Brayden took over the waiting room inside the old train station. If you look carefully, you can see the front door is cracked open. John Michael and Brayden discovered that if they pushed a bit, they would be able to escape.
Let's just say these two will not be left alone -- who knows what kind of trouble they'd get into!

I didn't get everyone's photo, but I did get this cute one of John Michael feeding Sofia. Her brother, Joaquin was in the stroller and Sheridan came later to join us just for dinner.

Just the moms... me, Darlena, Debbie (she came to say hi), Sheree and Jennifer.

And finally, the evening ended with a nice bowl of ice cream. Besides meeting up with his friends, this was for sure John Michael's favorite part!

Brown Bear, Brown Bear... Book Embellishing Party

2010-10-06T23:29:00.000-07:00

Last Friday night, I hosted the Ds Sisterhood for a Brown Bear, Brown Bear book embellishing party. We had 14 moms and one nana, plus a few adorable kids. The book is called Brown Bear, Brown Bear, What Do You See? by Bill Martin, Jr. and artwork by one of my favorite artists, Eric Carle.

I borrowed the embellishing idea from Bessie Barth, Music Therapist and Director of Music to Grow On. She writes, "This was my original idea especially since I had some clients with visual impairments that needed something to experience the book. I also found that it was more engaging for many of my clients and made it multi-sensory and easier to follow along." Two of her interns took the idea and really tried to make the book true to textures related to the animals as best they could.

John Michael loves to feel the different textures. We love the book because of the sing-songy text. For each page, we sign and say the color and animal name and then make the associated animal sound. For goldfish, we usually call it orange fish and smack our lips. It's very funny to watch JM do it!

It was a tight squeeze in my kitchen, but we managed to craft and enjoy appetizers and wine.

When was the last time you played with glue?

The hot glue station...

Some moms even made two books that night!

Joey, Eva and Sofia played while their mamas crafted. My daughter, Anna, did a great job entertaining them.

We finished the evening watching Deedah. "Deedah is an honest, touching and often humorous account of a seven-year old girl’s relationship with her six-year old brother, who has Down syndrome. The 26-minute film, shot in documentary news style, follows the siblings through their daily lives."

While watching the film, I saw glimpses of Greta (5) and John Michael (almost 3) a few years down the road. Greta loves John Michael without condition. She nurtures him, cares for him, plays with him, dances with him, chases him, encourages and motivates him and is an advocate for him to other kids at her school. He calls her "Deh duh" for Greta and we sometimes call her that, too, just for fun. This is one of those films that should be seen by every school-aged child, as well as doctors, teachers and other parents.

I've included several more photos from our book embellishing. I'm hoping to contact Eric Carle to show him how cool his artwork looks in 3D!

Red bird has red feathers that fly off the page!

The blue horse has yarn hair. We used hot glue for this.

Here, we added a suede collar and rhinestone.

The teacher's glasses were made out of blue chenille stems.

The bottom row of children have googly eyes glued on.

Wordless Wednesday -- Chocolate Pudding!

2010-09-29T08:52:00.000-07:00

Mmmmm... Loving his chocolate pudding...

Monkey See, Monkey Do...

2010-09-26T17:21:00.000-07:00

John Michael loves to copy whatever his siblings are doing, which has aided greatly in his learning.

Here, he's filling a piggy bank with loose change for a local charity. Very good for fine motor skills. The coins are small and hard to grasp, and the hole is just a slit not much wider than a quarter, not to mention it's good for his concentration, too.

Another skill he's picked up is building with Duplo Lego's. He used to just stack and stack, but now he seems to be building out a bit as well. He's discovering more ways to build and design. I LOVE Lego's. He also plays with the Lego animals and cars.

This is a funny photo and doesn't do it justice... He's talking on a play phone making his fake laughing sounds while pulling the "barking" dog. It was soooo funny, but I didn't get a great shot. He was obviously mimicing Greta who has lengthy (pretend) conversations on the phone all the time.

And finally, I caught John Michael learning the fine art of making funny faces from Greta after sharing a pretzel snack.

I love all the learning that goes on, even when I'm not actively teaching him anything in particular. Life is full of opportunities for learning, you just have to open your eyes to recognize it.

Take 2... Updated video with captions

2010-09-23T08:41:00.000-07:00

I know I'm crazy, but I was up until 1:30am adding some photos I'd forgotten and then started labeling all the places John Michael has been.

John Michael -- Birth to 3 years. You're so Amazing!

2010-09-22T07:59:00.000-07:00

In preparation for John Michael's transition to preschool meeting tomorrow, I gathered up all my favorite photos. The first take was 9 minutes long! Here's the pared down version. I've kept it to about 3 minutes to show him doing all kinds of things. John Michael... you're so amazing!

Gold Rush Days -- Sacramento, CA, circa 1850

2010-09-13T22:06:00.000-07:00

The Old School House, circa 1850, Sacramento, California.

Sacramento was "the" place in the 1850's for finding gold. We spent Labor Day in Old Sacramento for Gold Rush Days where the streets of old town are covered in dirt and the only transportation to be seen is horse and carriage. There are lots of shoot-outs and displays to see and things to do. Here, we're in the old schoolhouse. The boys in the front are in trouble for sitting on the girls' side of the classroom. The one on the left looks remorseful. The one on the right, well, he was taken out back and paddled.

These pioneer girls are enjoying the shade after braving harsh conditions and surviving the long journey from the east in a covered wagon. They're smiling because they just had their first bath in months.

Here's that boy again. Like I said, nothin' but trouble. Playing Faro in the tent city. The boy actually won the game and left with 21 chips. He had some sasparilla and a bath, and paid for the girls to have a bath. Perhaps he's a gent after all.

A woman making gorgeous lace using wooden bobbins. Such an amazing skill.

The little prairie girl trying her best at tug-o-war.

This young man was trying his hand at "crack the whip."

A fine bunch.

They posed while waiting for the steam locomotive to be filled with water.

I love how the girls enjoy dressing for historic days. Nic used to, but he has outgrown everything we had for him. We found Anna's dress at a thrift store earlier this year -- a Jessica McClintock Gunne Sax dress for $14.99. I was so thrilled! And Greta's outfit is something I'd bought for Anna on ebay several years back. I love how she looks in it -- so cute. I can't wait to see John Michael dressed as an old fashioned boy next year.

MOMS! -- Introducing the "Whine-erator"

2010-09-08T09:32:00.000-07:00

This could be the invention of the century!

Kids making too much noise? Baby still fussing after you've met all his needs? Have you heard, "Mooooooommmmmm" followed by whining one too many times? Can't hear yourself think? Need a little quiet but still need to keep an eye on things?

Then you need the Whine-erator! Guaranteed to take you to a place of peace and calm, at least in the sound department. "Sorry, Sweetie, I can't hear you," will be your new mantra.

Order now. Limited quantity. You deserve some peace today :-)

Monkey Musings

Double Trouble

The Elephant Hunter

Wordless Wednesday -- Telling Secrets

Boredom Buster: Do*A*Dot Art!

Attention Span

Merry Christmas!

Ceramics Studio Painting

Grateful for it all...

John Michael turns 4

(Not so) Worless Wednesday -- FUNDERLAND!

Step Up for Down Syndrome Walk 2011

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

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

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

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

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

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

31 for 21 -- Behavior (Day #5)

31 for 21 -- Siblings (Day #4)

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

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

31 for 21 -- Down Syndrome Awareness Month -- Day 1

Mr. January -- The Sisterhood 2012 Calendar is Here!!!

Potty Training 101

The Sisterhood -- revisited

Wordless Wednesday -- Backyard Boys

It's gonna be OK...

So much change in 4 short days...

Guest blogging at Narretto Family blog today

Wordless Wednesday -- St. Bernadette / Lourdes Grotto and Garden

He's Making a Difference!

Eric Carle's art and John Michael update...

Beating Boredom with Barbie and G.I. Joe

Wordless Wednesday -- Brothers

Last day of preschool

Wordless Wednesday -- Mint Chip Heaven

Happy All the Time...

Three Small Words... One Giant Message!

Emerging sense of humor...

Expressions and Manners

Behavior issues...

Best. Thing. Ever.

Wordless Wednesday -- Monkey Boy

Treasure Hunt

Still Life Color Theory... or playing with your vegetables...

Baby Mine -- DSIA Calendar Photo Shoot

Soaking up some Mother Nature...

John Michael rockin' the sax

Receiving the diagnosis...

Becoming more independent...

John Michael and Greta performing a Valentine's song for you

The Many Faces of John Michael

Explosion! (of milestones)

John Michael Grooving to the Fresh Beats

JM playing catch with Mom

Foggy Day, Fun Day...

Sad.

Best Toy Ever...

The Gift of Time

Crumley Photo Book 2010 -- 200th POST!!!

First week of preschool...

Being thankful...

John Michael's first IEP... and turning 3!!!

IEP Goal: Sit on toilet for 1 minute

I'm going blind... to Ds.

He's gonna be just fine... Looking at preschools...

Uh oh, Oh no, YAY!

ArtBeast, New Friends and Spaghetti Factory, OH MY!!

Brown Bear, Brown Bear... Book Embellishing Party

Wordless Wednesday -- Chocolate Pudding!

Monkey See, Monkey Do...

Take 2... Updated video with captions

John Michael -- Birth to 3 years. You're so Amazing!

Gold Rush Days -- Sacramento, CA, circa 1850

MOMS! -- Introducing the "Whine-erator"

Boredom Buster: DoADot Art!