Wordless Wednesday -- Backyard Boys

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...

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...

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!

He's Making a Difference!

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...

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...

Wordless Wednesday -- Brothers

"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  :-)

Happy All the Time...

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."

Is it "Wordless" Wednesday already?

John Michael is getting lots of practice being a helpful, loving big brother to 4 1/2 week old, Luke.  And since John Michael is a Binky junkie, he thought Luke should have one, too.

A gift for Luke... I love this shirt! So cute!



I wasn't sure how John Michael would react to Luke lying in his lap, but he was good... until Luke started fussing.



Cute, eh?  Well, this isn't the whole picture... if you know what I mean. It's just a quick snapshot in time. Less than a minute later, Luke started crying and John Michael wanted nothing to do with him :-0 However, I'm hoping that this coziness becomes a familiar scene as these two grow up together.

And, another glimpse into the future...  John Michael is very generous with kisses.  It totally melts my heart!

As if you couldn't tell already... I am super in love with all my children, even if Luke and John Michael are getting more attention these days.  But one thing remains, no one can take the place of John Michael in my heart.  There's just something incredibly special about him and I'm so proud of my big boy!  So proud of all his accomplishments and milestones.  Having Luke after John Michael puts it all in perspective again, and I realize how much harder John Michael has had to work to get where he is today.  LOVE that boy!

GOAL!

Well, not really.

Not as in... he scored a soccer goal.

But, at Anna's opening soccer game this morning, John Michael was all smiles as he showed off his latest achievement of standing unsupported and taking 2 to 3 steps. To that, I say

"Goooooooooooooaaaaaaaaaaaaallllllllll"


I'm guessing that by the end of soccer season, which will be John Michael's 2nd birthday, he'll be ready to kick the ball. That would be a fun goal to work toward!



John Michael loves to climb on Nic, who loves every minute of it!

Nic noticed that JM's ball, jersey and shorts are all Adidas. Now we just need to get Adidas to notice :-) I'm not sure if they have any kids with Down syndrome in their ads, but there's a first time for everything.