Thursday, December 20, 2012

Happy Christmas!

When Charlie is not randomly wishing people a Happy Birthday, he is warmly sharing his "Happy Christmas" greetings.  

And so we are with you, all of our friends, 
a Very Happy Christmas to you!


There is no one so vulnerable or so joyous in all the world than a new mother, a baby freshly birthed.  We wish you warm, happy celebrations with family and friends as we remember the birth of our savior, come from heaven into the world.  He loves us so much!

And.. we love you, friends.  Thank you for being there for us this year.  Thank you for being our net, our landing place, our joy.  Thank you for being Jesus for us.  The body of Christ helps me to know we are safe.  We are housed, clothed, fed, and loved.  We are challenged and encouraged.  We can bare all things in Christ, and that includes you.  Thank you.  Much, much love to you this Holiday.  And, again, Happy Christmas!

Kim, Ray, Charlie, Calvin, and Miles

Monday, November 26, 2012

Dear Husband

Dear Husband,

I love you, and how practical and even headed you are.

That said, here are the top 5 reasons why I still think we should get a dog.

#1  I will shovel the poop.  Really.  I prrrrrrrooooooooommmmissssssse!

#2  Dogs make even the grayest, rainiest, gloomiest day a bit brighter, a bit lighter, a bit sillier.

#3  I'm great at training kids.

#4  A dog teaches responsibility hopefully to kids.

#5  This....

Sunday, November 25, 2012

Calvin's Isms

If I can sneak another thankfulness post in...

I am thankful through and through for this kid here...


This Calvin boy.  He is quick witted, curious to a fault, always a step ahead of me.  This kid.  What would life be without him, well, besides more quiet?  ;)  He is a wonder, that Calvin, and I am thankful for him and his isms.

And with that, a few fresh Calvinisms for you:


Rolling up burritos with his daddy, Calvin observes, "These burritos are a lot like 'shushi'."
Uh, sorta, I guess.


Joking with his Papa about the difference between chickens and turkeys, Calvin corrected, "Papa!  Turkeys are bigger and have beards growing out of their belly buttons!" 
Ummmm.....


And finally, Calvin ponders aloud the question that four years olds have been asking through the ages, "Why does the cheese stand alone?"

Saturday, November 17, 2012

Thankful

I am thankful for computers and video calls,


and my far, far away family that loves us so much.

Friday, November 16, 2012

Guess Who is Two?

Our very own Miles Benjamin!


Wow!  Miles.  What a beautiful year we have had with you, my son.

A little about our Miles.  He was a most adorable baby.  Entering the world in a storm of a labor, a frantic newborn settled only by the warm embrace of his mommy.  Settle he did, and has been glued to my side since.  A mommy's little boy, an introvert to most, but a total class clown around those who have gained the honored position to enter his "circle of trust".


Cute as a button as an infant (we called him Mellow Miles), and a rough and tumble toddler (aka Conky Conk).  Definitely a child with a bent toward athleticism, fearlessness, and a hearty dose of "if my brother does it, I'm gonna try!"  Or as Miles more simply says, Me Too!  This little munchkin is funny, sweet, full of cuddles and jokes and tenderness.

Fully indoctrinated into the love of trains, our Miles takes train books and steam engines to bed with him instead of blankies or stuffed animals.  He has the cutest little way of pading around the house, and is always up to something.  If the sliding door is open, and I suddenly wonder "where is Miles?" we can bet he has found a pile of dirt to dig in, bugs to poke, steps to jump off.



He talks!  In July I was sure he would be a late talker, not even "babbling" at that point.  Oh, he had been saying "Mommy" since 7 months (Mommy's boy, remember?).  But other than that, it was all grunts and motor sounds.  Then August came, and one word, then another, and now full "thought" sentences... he says a bunch of words together, not always in order, but the sum of which form a complete thought.  So adorable!  You almost hate for speech to improve so quickly at this age... well, so long as you can figure out what he is communicating, and we can.  He is a great communicator, if not a proper one.

He is a little one we have been able to enjoy along with our 'older' boys, who find him just as novel and wonderful as us grown ups.  "Oh, toddlers," we say.  And, as Calvin told a friend recently, "You just need to have a toddler around if you are going to have any fun."  All four of us are looking out for this little character.  His funny 2-year-old ways teach my older boys patience, responsibility, compassion.  They are amazing with him... er, when they are not making him cry, anyway.



What can we say... I am thankful for this boy.  He has made our lives rich.  I can barely stand to think of what life would be if that guitar pick flip had not turned up "Fender", if ya know what I mean. 

Love you, Miles.  Proud of you.  Am looking forward to walking with you for another year as you grow, learn, and, of course, entertain.  Happy Birthday!

Love Mommy.

Tuesday, November 13, 2012

Thankful


Thankful for our farm share at Deep Seeded Community Farm!

Monday, November 12, 2012

Thankful


A slow morning...

             A lovely day...

                           Wonderful neighbors...

                                         And Freedom...

                                                        to enjoy life, to worship, to express who I am, to be safe, and
                                                        to raise a little family up for the Lord.

Saturday, November 10, 2012

Thankful


I am thankful for bunk beds and shared spaces.



And, I am thankful that when I have a bad day...


I need not bare it alone.




I am thankful for "Pomagrammas" (according to Calvin).


"Pombergeramits" (according to Charlie).


Tasting something new and delicious for the very first time.


Friday, November 9, 2012

Thankful still.


I am thankful for a Grandpa and Grandma who live just around the corner, who love our kids and us to death, who help out in so many ways.




I am thankful for a warm, cozy home, winter-y storms, and play-dough to pass the minutes together.




I am thankful for rare quiet moments, a squishy, comfy bed, and brothers who want to be together, always.


Friday, November 2, 2012

Thankful

(Started on facebook, and decided I want to put it here so I can always remember.  I am so thankful, and have so much to be thankful for.  Happy November everyone!)

11/1/12


 One thing I am thankful for... my husband. He holds me together, is my best friend in the world, needs me (you *know* you'd be lost without me, Babe), loves me even with all the flaws I have. Sometimes I don't get how he does it... how this man loves me (me!) day after day after day. How is it that we continue to grow closer as these years fly by us... surely by now we should have come unraveled. I am thankful for Ray's parents, Rod and Kathi who brought up their boys to be men of integrity, totally rad, a dash of tenderness, and just the right kind of stubborn. And foremost, for God, our Papa in Heaven who makes all things possible, even for a girl like me to find a real Prince Charming in Humboldt County California some 12 years ago, and who gives us the grace and ability to do this marriage thing, in good times and bad, in health and sickness, when we are poor and... what was it the minister said to me during our vows... " you *do* know you are marrying a musician". Anyway, I am thankful for you, Ray, not to mention completely and utterly in love. 


11/2/12  


I am thankful for my boys. Together, they are our little pile of puppies, nipping at our heals, leaping into our arms, chewing up our things (ahem, Miles), and bringing a lifetime of joy-wrinkles to our faces. Astounded and thankful as I contemplate the blessings they bring to our lives, to our entire family, to our community of friends, and to each-other, now and for a lifetime.

 

Sunday, October 28, 2012

Down Syndrome Self Advocate

So this morning I stumble out to the breakfast table to find a very weepy Charlie sitting in front of untouched eggs.  Ray explained he was feeling sad because a certain take-out container from the restaurant was sitting on the table empty.  You see, it had been filled with the extra chips from dinner last night.  Charlie had very proudly carried it home, and I guess he had planned to eat those chips later.  I did not know that, and did not think a thing of it when I mindlessly munched those chips up last night after the kids had gone to bed. 

Now, you have never perpetrated an act so low until you have broken Charlie's little heart and made him cry.  Charlie... oh, he is such a sweet, sweet soul.  He does not have a social filter on his feelings that causes him to temper what he feels to either a) not act in a way that is inappropriate, or b) act in a way that he feels will be to his advantage.  He just feels what he feels openly and honestly.  Now, he does moderate his behavior when he is not in that place of raw emotion, like being a well behaved kid at school.  I am just saying when an emotion washes over him, it bubbles up and comes out exactly as he feels it whether it be exuberant joy, deep fear, or broken hearted sadness.  Oh boy, I tell ya... by the end of my conversation with him this morning as I confessed my transgression, his deep hurt so evident in his tearful little face, I had promised him any treat he could possibly imagine from the store after church today, and if that hadn't worked I probably would have promised him any toy from the toy store and let him watch cartoons all day long if that is what it took to help him feel better.  I felt that bad.  I didn't have to promise all those things though, because he forgave me sincerely and quickly, and then skipped off to eat those cold eggs.  By the end of breakfast he was offering me chips from the cupboard to help me feel better!  He is a child full to the brim of love and compassion, for people big and small, and for animals of all kinds.  It flows out of him so freely.  When I ask for his forgiveness and he gives it, I know I am forgiven.  Deserving or not.

This whole experience was topped this morning by an open letter I read posted by a man who has Down Syndrome named John Franklin Stephens.  He wrote the letter to a person named Ann Coulter (don't know who she is, but she is apparently a well known political "talking head" type of personality--you can google it) who had tweeted something about the president being a r*tard.  The letter is astounding.  Frank, honest, witty, and full of compassion.  Oh, Ann Coulter well known public person, my prayer for you or anyone in the public eye using the r-word is that you truly would have the opportunity to be changed by people like John Franklin Stephens--by the sincere forgiveness and compassion of people like my Charlie.  To have your heart completely altered by a person with so much to give while at the same time being utterly persecuted by the world at large.  Persecution with a 90%+ rate of pregnancy termination for prenatally diagnosed babies with Down Syndrome in the developed world, with routine institutionalization from birth in many less technology equipped countries, with name calling, with belittling, and dis-compassion.  Why do I even need to blog about this stuff when people like John Franklin Stephens hit it out of the park all on their own.  Awesome.

I got this letter from The World of Special Olympics Blog.  The Huffington Post has an article about Stephens as well.


Dear Ann Coulter,

Come on Ms. Coulter, you aren’t dumb and you aren’t shallow.  So why are you continually using a word like the R-word as an insult?

I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow.  I am not either of those things, but I do process information more slowly than the rest of you.  In fact it has taken me all day to figure out how to respond to your use of the R-word last night.

I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.

Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next.

Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift.

Because, Ms. Coulter, that is who we are – and much, much more.

After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me.  You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.

I have to wonder if you considered other hateful words but recoiled from the backlash.
Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.

No one overcomes more than we do and still loves life so much.

Come join us someday at Special Olympics.  See if you can walk away with your heart unchanged.

A friend you haven’t made yet,
John Franklin Stephens
Global Messenger
Special Olympics Virginia



I know there is little point in comparing Charlie, age 6, to John Franklin Stephens, age 30.  So much will change for Charlie, and like lots of Down Syndrome advocates point out, being "always happy" is not a trait of Down Syndrome, just a stereotype, just like being always compassionate is not something we can expect of Charlie for the rest of his life.  What astounds me is the way John is dealing with this debacle.  He signs his letter "A friend you haven't met yet." John has never had an easy time of life, neither has Charlie, but look at the grace for which they apply to their circumstances.  Look at these two people, and many more besides, who struggle, who are lowly in the eyes of the world... look at how they shame the wise.  These lives are worth living, folks.  They are worth knowing, and loving, and cheering on, and including in the community.  They are worth the slow, drawn out moments it takes to get to know and learn from them.  Sometimes I think the astounding ability Charlie has for forgiveness, for compassion and really feeling life in an honest way, is related to his cognitive delay, the way his little mind gives up memory, is slow to comprehend, and simply forgets.  How easy life would be to be able to forget the sting of hurt, to forgive because you could not remember the offense, to not worry because you do not understand the full implications of your life.  And still, does God not look after Charlie?  And Ann Coulter?  And me?  I thank God I have Charlie to show me a higher way.  An honest and compassionate way.  And I am thanking God for John Franklin Stephens.  I am a new fan.

Friday, October 26, 2012

School Update

I feel obligated to post.... something.  It has been an overwhelming month.  Nothing I can name specifically, but the writing about Down Syndrome, mothering, boys, life... that energy is just, I guess, scattered right now. 

Charlie is doing awesome.  Healthy, loving school, making friends, catching on.  We've seen amazing changes in him lately that we did not expect... this introvert kid who hides in his room when people come for dinner.  He is becoming more confident in social situations.  We had our entire band over for dinner the other night, and Charlie jumped right in with the other kids, noise and all, played with them, interacted, even attempted communication (which in the past he seems to avoid except with family), and had a great night.  We see this same thing emerging in other situations, and it is so surprising.  Charlie is a watcher.  He watches to learn.  He watches to see if something is safe.  He watches to see how to participate.  Well, anyway, in Kindergarten he has as yet been very reserved, very watchful, and I think, learning a great deal about how to hack it as a regular kid from his the peers in his mainstream classroom.  He learns so slowly with academics.  His genius is really in the social area, and he is soaking up so much from his classmates.  They love him, too.  High fives and hugs all around at the end of the day.

So that is Charlie this month of October.  Emerging.  You know, when he was a baby I worried about his future.  I admit it.  I did.  But, that worry is so far from me now... I look forward to it.  He may not become a man of prestige in worldly standards, but he is going to be content, loved, satisfied in any circumstance. 


Monday, October 15, 2012

Down Syndrome Awareness: The Experimental Child

Ah!  No time to blog, guys.  Really, I should be in the shower.  Ah well.

I was looking back at a Down Syndrome Awareness Month post from a couple years ago, about the time Miles was due to be born (and then wasn't born until mid November... little stinker!).  So much has changed.

Charlie is our first born... you know, the Experimental Child.  And Calvin, well I guess being our first "typical" child he is Experimental Child Number 2.  As parents we do a lot of head scratching, don't we?  We read the books, we examine our hearts, we pray.  In the blog from a couple years ago I shared that I felt a lack of attachment with Charlie.  At the time he was not calling me mom, he was calling me Kim, and while he loved to cuddle, he was not seeking out hugs or chances to play with me... not competing with his brother for it, I guess.  Conversely, Calvin was very attachment seeking... maybe attachment demanding is a better way to say it!  So, I blamed Down Syndrome, as I often do, and resolved to work investing in some attachment.  Well, it either worked or was a stage, because when I read that a couple days ago I was totally surprised... surely this is not the cuddly guy who draws me into his games and skits all the time and calls me Mommy?  My second thought was, Wow, that is exactly how I feel about Calvin right now.  The common denominator?  When I wrote that about Charlie, he was four years old.  And Calvin?  He's four now.  A Down Syndrome thing?  Or just a stage and age any kid goes through as they grow and differentiate who their own "selves" are (that there is some psychological speak for ya!).  Sometimes they demand our attention, sometimes they don't.  Either way for a hug seeking Mommy, those "I don't need you, 'cause I'm a big kid" stages are hard! 

Oh Down Syndrome!  You take so much blame!  This kid, really, he is so "normal" in many respects... but being Experimental Child Number 1, well, sometimes it's Experimental Child Number 2 who adds the truer perspective in hindsight.

Experimental Children Numbers 1 & 2 pull, while Hypothesis Test Child pushes.
 

Friday, October 5, 2012

Down Syndrome Awareness Month

Oh yes it is!  Time to be aware!

I've many friends blogging all month, every day in honor of Down Syndrome Awareness month.  Others are posting daily tidbits and photos on Facebook.  I am well aware, but I will tell you, I am loving seeing all these beautiful faces, fun facts, wonderful reports. 

I am doing what I can, but I am afraid we are too busy these days for daily blogs... still, I want to play, too!  So, in addition to some fun little facts I am posting on Facebook, I will try to re-post some past blogs posts about Down Syndrome, and if I can, paint a bit of a picture of what Down Syndrome is like in the context of a family.  I like what a friend said, "Our life does not revolve around Down Syndrome, but it is something that affects us every day."  

And that said, here is a little Down Syndrome Awareness for you today...

Charlie is, more than anything else in this family, a brother and a son, plain and simple.  He is a great brother, and so blessed to have his younger brother Calvin so close in age.  They are two peas in a pod, those silly boys.  I love how in this picture Cal and Charlie are looking up in the camera, and Miles is looking at them.  Miles wants so much to do every little thing they do, and Calvin and Charlie are so, so good about accommodating that desire.  "Calvin, hold my hand in the parking lot so Miles sees that it is what we do."  "Charlie, show Miles the way you hook that train track together so he can do it himself."


Charlie may be behind in areas, but to his brothers, he is just Charlie.  I think Calvin might be starting to get what Down Syndrome is, but it is difficult because Charlie is first in the line of siblings, he has always been who he is to his bros, and they have a play language and relationship that is as natural and dependable as the sun rises each morning.

I guess you could say in our family Down Syndrome is natural, just a variation on normal.  We roll with it... and while I occasionally get accolades on my "exceptional" (because of Charlie) mothering, the truth is, anyone can do this.  We do.  And we are still smiling.  :)

Sunday, September 23, 2012

Calvin's Exciting News

This boy, Calvin, shines so bright in my life.

Everything about him is fresh and familiar and just full to the brim.  If I had to pick, I would say he challenges me the most as a parent trying to guide.  He negotiats and presses his own reasoning about boundries, he questions... always questions!  Thing is, he reminds me of me.  Through and through.  He is intuitive and sensitive and curious, full of imagination, all of life is so big before him.  And, he is fully age 4, with all the quirks, the spaz, the funny quips... you know, four-ness.

There are the parts to Calvin that, oh my goodness, are so incredibly pure and beautiful.  The way he hunches down on his heels and interacts with his brothers, talking at a level they can understand, drawing them into his imaginative plans.  He is patient and understanding.  He is excited to make any new acquaintance.  If you are within talking distance, expect a "Hello!  My name is Calvin!"  He just has a desire to connect.  I mean he is just that warm and open and unpretentiously friendly.  This part of him reminds me of his Daddy-O--the ease of connection, the non-judgement.  I always say Ray can make a friend in 5 minutes... genuinely, mind you. 

Calvin and I talk a lot about God these days.  It was last spring he told me he would like to, I guess officially, tell Jesus "thank you" for his work of redemption.  Tell Him he, Calvin David, wanted to do what Jesus does.  We pray so often for the things of the Kingdom, this kid and I.  We talk about the fruit of the Spirit.  Often I will catch him acting out of that fruit and say, "Calvin!  That was kindness!  A fruit!"  He runs to me, and what was intended to be a hug becomes a full tackle of unconstrained excitement.  He is so open and trusting.  He loves his Lord, and I love to watch it.  Papa God, as we have begun to call him.  This child astounds me with his faith and the delight in which he accepts the free, lavish love of his Papa in Heaven.   If only I could believe so swiftly and easily just how much our Papa loves me.  Calvin teaches me so much on this point.

Anyway, without further delay, this shining light, my Calvin David, has big news!  Preschool!


For this extrovert kid, school has been a big thing, a hope for him.  He has watched his brother Charlie go off to school on weekdays for 3 years while he stayed by my side at home.  Often he would ask when it would be his turn, and I always told him his education was at home, and it was.  Is, really.  Last year he deduced that when he turned 5 he would "get" Down Syndrome, and then he would go to school.  Sorry bud, doesn't work like that.  Anyway, through a wonderful series of events, prayer and an unexpected blessing, we have been able to enroll Calvin in a really stellar preschool program.  Just a couple hours four days a week, but I will tell you, for this busy boy always on the move, this insatiable appetite for new experiences, preschool has been so wonderful for him.   It makes my heart so glad to watch his excitement.  A lot of our family decisions revolve around Charlie, and really, this is the first time we have done something like this for Calvin.  This is his thing, and I am so happy to give it to him.

Well, that is it!  Calvin's big, exciting news!  We are so happy for this guy to do this special thing.  What a blessing.  What a boy.


Saturday, September 15, 2012

Buddy Walk!

Funnest time ever!

Gosh... The Buddy Walk.  It is such a happy, wonderful event.  My mouth still hurts from smiling so much.  A special day to honor our son who has Down Syndrome, and hang out with all the wonderful people who we have had the opportunity to get to know because of Charlie coming into our lives.  I mean really, with statistics like these, how can Buddy Walk day not be awesome:

• 99% of people with Down syndrome said they were happy with their lives
• 97% of people with Down syndrome liked who they are
• 99% of parents said they love their child with Down syndrome
• 97% of brothers/sisters, ages 9-11, said they love their sibling
(As seen on the blog of Dr. Brian Skotko.)

Man of the hour.

We always end up talking a lot more than taking pictures at this event, but we got a couple.  Charlie, as is his way, was overwhelmed at the start of the event... he sort of despises being the center of attention (when not at home with his family, where he revels in being "class clown").  But after a while he got into it, played, walked, had a great time with friends.

The Extrovert, and Down Syndrome sibling extraordinaire.  Exciting news from this kid coming soon!

We had the blessing and opportunity to meet three new families with the most beautiful and scrumptuous babies with Down Syndrome--two precious girls, and one baby boy with roly-poly arms just like Charlie's were.... be still my heart.  Praise the Lord for giving good gifts!  And we were delighted to see some of the aids who worked with Charlie at his former preschool...  Thank you for coming!  It was so great to see friendly, dear faces (even if Charlie did not let on at first ;)

Sleeping?  Nope.  Just avoiding attention. Hmm... I see an Introvert, Extrovert, Introvert pattern being established here.

What do you say to a new parent in a few brief minutes visit between festivities and speeches? Oh, they have no idea how much I ache to hold their little ones, to laugh with joy and give my heartfelt, exuberant Congratulations!!!  Down Syndrome.  It's a challenge in many ways.  But most of all... it is the foremost blessing in my life.  I love each of my boys in the same mountain-sized, ocean-deep way, mind you.  I hope you know I mean that sincerely.  I am deeply grateful for, proud of, amazed by Calvin, Miles, and Charlie, individually, and together as brothers and sons.  But that little Down Syndrome bit...  it is hard to describe just what it is to me... to us.  It is pure blessing.  Like this random and rare thing that happened to us, that defined us as a family... only it was not random, but on purpose.  And it's good.  It's a joy that reaches beyond understanding, and grows and grows as I watch Charlie grow, as I watch the ways Charlie is shaping Calvin and Miles, and Calvin and Miles are Charlie, and the ways Down Syndrome calls Ray and I as parents to be more... more intentional, more steady, more peaceful, more patient, more forgiving, more joyful, more lighthearted, more flexible, more compassionate, more inventive, more silly.  So...

Congratulations new local Down Syndrome parents and families!  We are beyond happy for your blessings!  Welcome to this community!  (And thank you for letting me feast my hungry eyes on your sweet, darling littles.  They are all so cute!)


Sunday, September 9, 2012

A List from the Week

1.  The toddler speaks!  All his sentences begin with 'me' or 'mine'.  How developmentally appropriate of him.

2.  It's not so much change, not so much launching into something new and unexpected--or even unwanted--it's the waiting and not knowing that gets to me.  Peace.

3.  Note to self:  When Charlie helps put the dishes away, they may end up in some interesting places in the house.... not necessarily the kitchen.

4.  Calvin is intuitive, genuine, outgoing, sensitive... He is just so amazing and beautiful.  He is like a treasure I both want to protect and share at the same time.  He astounds me.

5.  Worship... pure, wonderful, beautiful worship with my husband this morning at church.  So Awesome.  Love you Jesus.... totally. completely. in waiting. in doing. in everything.

6.  My new motto:  "Don't worry... we've got Raymond!"  Seriously.  Is there anything this man cannot fix?

Thursday, September 6, 2012

How do you take your vitamin D therapy?

It's September in Humboldt County, and you know what that means....

Vitamin D Therapy Month!

Oh yes, when you live on the California North Coast you just do not see the sun so much, so when August and September roll around, we coastal folks strip off our clothes at the first hint of sun, head out into our yards, and let the hot thing in the sky scorch our skin a little bit...  Ahhhhh... Natural vitamin D, just as God intended us to get it.

As many Humboldtians, I recently was diagnosed as very vitamin D deficient, and beyond taking large doses of supplements was actually told to sunbathe without sunscreen (reasonably and responsively), so I literally mean it when I call a bit of shirtless play Therapy!  (Okay, I wear a shirt, but the boys love a chance to strip down a bit and run wild in the yard.)

So, how do you take your D?





Saturday, September 1, 2012

Kindergarten! Week One

Oh yes.  Big, big steps happening here.

This week was Charlie first week of Kindergarten!  A brand new school.  Brand new teachers.  New friends to be made.  New things to do.  New routine.  New faces.  New, new, new!

Listen.  This post is about to get long.  There is so much to say about our unique son Charlie, and this major transition in his life.  Here we go.

He is so big!  Here he is feeling awesome in his new Robot Back-pack. 
So how did it go?  As his Mama who knows him so well, I can say it went as expected.  We prepared for this week the moment summer school let out.  We went to his new school at least twice a week to play on the play ground, practice walking (as opposed to galloping, running, or dancing) in the hallways, practiced finding the bathrooms and his classrooms, etc.  I made a storybook about his new school and we read it a lot.  We prepared and prepared and prepared so he would know just what was going to happen, and by the time school started he had it down... and yet, was not excited to go.

His daily schedule involves going to "Special Day Class" for the first one and a half hours of his day, then he is taken to "regular ed" Kindergarten class for the remainder of the day.  Ray and I took him to school on his first day and dropped him off in his special day class, and you would never know he could hold on to a leg so tight!  Oh Charlie, new things can be hard, can't they?  We stayed with him a few tearful minutes and then peeled ourselves away.  He was prepared.  He knew just what was going on.  And he was feeling very reluctant in the face of it.  But... He did great.  He really did.

Gosh.  Remember when he looked like this?  How do they grow so fast...

A few special thoughts on a new special education adventure: 

1. It took us a long time  in Charlies life to realize Charlie has some kind of blood sugar issue, undiagnosed.  We anticipated that he may need extra snacks, and we were right.  A few times this week he has fallen to sleep, or just sort of lost willingness to participate, and each time a snack perks him right up again.  I am wondering if it is important to know why this happens, but never-the-less we know a quick snack helps this little guy stay in the game.

2.  Charlie is so blessed to be going to school with his little friend "B".  She also has Down Syndrome and her family is such good friends with us... we are so thankful for them.  B is doing well, and both her family and ours are feeling so blessed by this new school... they want our children there, want to make it work for them to be mainstreamed.  Their special day teacher is so great, as are the aids, the principal is wonderful, and they both have great Kindergarten teachers.  I come home every day thanking the Lord, praising him for this new opportunity.  The school they went to for preschool was so amazing and wonderful, but far away, and it was hard for me to feel like I could be a part of Charlie's education.  Now I get to pick him up from school every day, chat with the teachers, meet the other parents, I am neighbors with his class aid, and with one of the resource teachers.  It is a blessing and a gift to feel so at home.

Here he is on the first day the moment we rounded the corner from the parking lot into the open-air hallway.  The full weight of 'School', with all the bustle washing over him.  My very tender, prone to shyness little Charlie.  He gets this look almost every time we do something new where lots of people are involved.

3.  We had Charlie ride the bus to school starting day 2.  It is so wonderful that he gets to ride the same bus as the last three years, with the same wonderful bus driver and same beautiful faces on the bus.  I like to play a shy game of peek-a-boo with another young man with Down Syndrome who sits across the isle from Charlie in the front.  The bus is a familiar routine, a relaxing way to start the day, and no more tears when he gets to school.  The transition too school is MUCH easier when he rides the bus.  Plus, I don't have to rush to get myself ready in the morning.  And you KNOW the bus driver sees a lot of disheveled parents in the morning.  What a beautiful person she is.

4.  Charlie and B were set up with one aid between them to sort of shadow them, help where needed, etc. while the school (and us parents) decide what kind of support is needed for each child.  Charlie and B are the antithesis of each other.  Charlie is big (well comparatively to B), a cuddly teddy bear kind of guy, and B is a tiny little ball of energy--a force, really.  So small and so mighty!  Charlie is too shy to "act out" and will more likely just shut-down under stress.  B lets you KNOW if she is overwhelmed.  Charlie is really solid on those "student like behaviors" needed in school, but very, very slow on picking up academic stuff.  B is, her mom says "squirrely", but sharp as a tack with academic stuff.  It is really fun to watch how they are each adapting to this change in their own way.  Well, the aid has been mostly with energetic, fabulous little B, helping her to tone down the "squirrel factor" as she settles into a new routine, and Charlie has been mostly hacking it on his own, falling line with the other kids, perhaps too uncomfortable to draw attention by acting out of place.  He will need help with academics more intensively than our wonderful friend B, but for now, while the main focus is helping the children learn how to "do school" he is keeping up fantastically!  I am proud of him for doing so well, "hacking it" all on his own.  Despite his little blood sugar moments, he is keeping with it, falling back into pace with "doing school", almost more easily that I would have guessed.  He watches the other kids, and does what they do.  I am eager to hear week 2 reports.  And miss B?  We are very proud of our little friend.  She is also doing so well.  She has even made a new friend, I hear.  Good job, B!  These two pals are full of potential, I tell ya.

Three very nervous people in this photo!  Gosh.  We love this boy so much.  Our first born child.  A special boy who changed everything... who changes everything.  We count ourselves blessed.
5.  Charlie had some really close little buddies at his old school.  Not to mention he felt so safe and loved by his teacher and staff.  Coming to a new place has been hard for him.  I sense a very sore spot in his little heart as he realizes none of those people are at his new school.   He likes the activities, learning the routine, doing "school stuff", but is emphatic that he does not have friends.  After his first day of school he told me, "I didn't find my friends."  I think he was hoping to see his little buddies.  Every time I have mentioned friends since, he simply insists that Calvin and Miles are his friends and no one else.  None-the-less, his special day class teacher has told me he is being social and making friends in that class, which is so wonderful to hear.  I hear the same thing from the aid about his interactions in Kindergarten class, so friendship will come.  In the mean time, I find myself scratching my head on how to help him deal with his "loss".  Sweet, tender boy.  We pray every day before the bus comes for the Lord to fill him with peace, and He has, and still we move through our losses at the same time.  Life chugs on.

 6.  Charlie is so proud of himself.  He really knows he is doing big kid things and he is excited about it!  The first day when we picked him up he ran to me, jumped, pumping his fists in the air, and yelled, "I did it!"  The second day I picked him up, he ran to me yelling, "All by myself, mom!"  The third and fourth day he walked out of his class, in line without his aid beside him, and maintaining his spot in line even after he saw us.  What a big thing!  He threw his arms around Calvin so excited to see us.  He was beaming.  He knows he is doing so well.  My heart swells with joy to see him revel in his accomplishments.  Special needs parents approach changes like this with so much unknown.  We felt led to this school for a couple reasons, one it is in our town, two the culture of the school is that of one that wants to integrate children, that is excited at the prospect of helping a boy with Down Syndrome be a regular part of the community.  He is getting his chance to be that, to show he is more than able, different in many ways, but full of potential and worth.  We all believe that for him, and he is living it. 

Okay, I'll spare you the novel I could go on writing.  I'll wrap it up by saying Charlie is overwhelming me with his beautiful abilities, including the ability to be a light and a joy and a blessing to his community.  Down Syndrome is an interesting thing... sparked by one tiny wayward chromosome at the moment of conception, and as Calvin would say, Voila!--You have a life that speaks to people... in one way or another.  Charlie is introverted.   He would rather people not notice him, but they do (they notice all of us because of him... in our community we are known because of a wayward chromosome that lost it's way some 7 years ago.  Differentness can make you memorable, I 'spose.). This life we've been given--we know for us, and for Charlie, there is purpose.  Charlie is in our lives on purpose, we are "special needs parents" for a reason, Calvin and Miles are siblings of a brother who will always need them, Charlie's very existence has purpose and light and a message.  It has been a long time since this has been quite so clear, so crisply apparent, as it has this week.  Only the Lord knows the trials, the beauty, the light, and the adventures ahead of us.  And as we begin with a few hesitant steps, clinging to legs as we go through the open door, peeled away from what is comfortable, we know one thing is sure: we are cupped in His hands.  We can feel it.  He is holding us up.  He is leading.  We are right where we are supposed to be, and there is a greater story in all of it.  A story we can trust and walk in and discover.


Sunday, August 12, 2012

In which Calvin accuses Daddy of calling Mommy a pig...

This Calvinism really needs a cartoon strip to show Mama's looks of disapproval combine with Daddy's look of why-are-you-doing-this-to-me during this little family conversation:

Calvin:  Daddy... Why do you call Mommy a pig?

Daddy:  What?!  I don't call Mommy a pig!

Mommy:  (Hand moves to hip.  Eyebrow raises.)

Calvin:  I hear you call Mommy a little pig.  Why?

Daddy:  Calvin, I have NO IDEA what you are talking about.

Calvin:  Ya, Daddy.  I heard you!  You ALWAYS call Mommy a little pig.

Daddy:  Oh ya?  When?  Tell me how.

Calvin:  You call her "Babe", Daddy. 

Daddy:  (Relieved)  Oh... Calvin, I'm not calling her a pig... it is just a nice name people call each other when they love each other.

Calvin:  Huh?

Mommy:  ROFL

Saturday, August 4, 2012

Back to School Shopping with Charlie

Went clothes shopping with Charlie this week.  This is a totally new experience for us.   I've never taken the boys clothes shopping in this way.  We've always relied on the second hand stores, and there you take what you can get (or Christmas! :).  But with school starting, and Charlie at the age where the second hand stuff is slim pickings, and with his unique body shape and clothing needs, well, we actually did "Back-to-School" shopping.  It was a fun experience.

We have some, well, special needs when it comes to clothing for Charlie.  First, he has "short limbs" which is common in Down Syndrome, and also a delay in fine motor skills and low muscle tone.  In a nut shell, we look for pants that look like normal pants but have elastic waists and can be easily hemmed.  He is 6 1/2 years old now and wears a size 5T that we hem to about a 3-4T length.  Shirts are easier, but still the short limbs.  He wears size 5T shirts with his little hands just poking out the ends and cuffs always dirty.  I haven't found a way to successfully hem knit shirts on the sewing machine I have.  Also, we avoid collars... having fabric brush his neck or cheeks like shirt collars just makes his skin crawl.  You'd never know he could get undressed so efficiently until you put him in a shirt collar.

We must have sounded funny in the dressing room trying on pants and then me instructing Charlie... "push them down... good!  Now pull them up...  good job!  Guess we'll get these ones."  We are working on zippers and buttons, but when he is at school we like for him to be as independent as possible.  Anyway, we were very successful and found a lot of pants that will work well, but lots of hemming needs to happen before August 28.  For shirts, well we've noticed that Charlie feels like a million bucks and just has a better day when he is wearing a shirt he likes, so I let him have his pick of the shirts... lots of music instrument graphics for this kid.  Shopping with him is pretty easy and goes something like this:

Mommy:  How 'bout this one, Chars?

Charlie:  No.  I-don-wike-it.

Mommy:  This one?

Charlie:  I-don-wike-it.

Mommy:  This one?

Charlie:  Oh!  I WUV it!

He is so cute.  And he is excited about his back to school clothes!


Friday, July 27, 2012

First Day, Last Day

Today was Charlie's very last day of school at his beloved Special Education school he has attended since his third birthday, three and a half years ago.

Here he is, newly three!  Miles wears these clothes, he was so small.




And today, our big boy, six and a half.



He was in such a great mood this morning.  As soon as this pic was snapped, he thrust his hand in the air yelling "Super Bunny!" and took off running for his last preschool bus ride...  and then totally ate in in the driveway.  Poor guy.  No matter, he recovered swiftly and had a fantastic last day.  Thank you to the summer school teacher and staff and bus drivers!  He had a great time.  Oh, and...  Good job to my buddy!


Monday, July 16, 2012

Would you like some toast with your butter?

The other day, in hopes of sneaking a quick shower, I set the kids up with Daddy's ipod to watch train videos for a few minutes.

What was Miles actually doing?

Oh, just eating a stick of butter in the kitchen.

Which begs the question...


How much money in butter would I need to spend...

to get a nice, warm, uninterupted shower every day?

Friday, July 6, 2012

A Few Thoughts on Charlie's Graduation

God changed the path of our lives completely the day that Charlie was conceived.  Our lives have taken a very different shape from our original ideas of grad school and ministry.  Launched in a totally different path as his little life sprang forth inside my womb... unbeknownst to us... different and unique from the first spark of life... 47 chromosomes... a world opening up to us at that moment that we had no idea we wanted... needed.  A gift.  But we did not yet know it then.

Plans changed quickly for us when, during finals week as I prepared to walk in graduation, I discovered I was pregnant.  We were dumbstruck.  We told no one.  As we sat in the airport with my parents getting ready to fly to Hawaii to watch my sister walk in her graduation, I stole away to a bookstore and bought a book on pregnancy.  I read it secretly on our trip.  I craved beef jerky.  I felt sick.  We still did not yet know the gift this boy would be to us.


When Charlie was born he was so soft and small.  He had a button nose, and big round cheeks.  The nurses gushed over how cute he was... and really, how often are freshly born babies that cute?  He was adorable.  He was strong and healthy.  A blessing.  But still we did not yet know... the nurses did not know... the doctor did not yet know.  No one knew about the gift just yet.

So when did we know?  Technically, we received his Down Syndrome diagnosis when he was just shy of three months old.  Detected at his two month check-up we waited an agonizing three weeks to receive blood test results.  For three weeks we looked on Down Syndrome as a huge blow.  We told just a handful of people, and we prayed and prayed and prayed for Charlie to be 'normal'.

But you know what?  God knows.  He knows what is best.  He intends good things for the lives of those who love Him.  He knows, and a one minute conversation with Charlie's doctor over the phone changed our world forever.  I remember I was laying in bed with Charlie as he napped when the phone range.  I answered immediately, having carried the phone with me everywhere I went for three weeks.   The doctor gently told me the results, "He has Down Syndrome", and just like that, nothing was ever the same.


I couldn't be more grateful for that very simple, understated moment, laying in bed beside my new baby.  And somehow here we are 6 years later with a vibrant, beautiful, inspiring boy.  A boy who made everything change.  A boy who still changes our lives as we consider his special needs and alter our family path to meet those needs.  You know what?  I'll just say it... we've sacrificed a lot for this child.  This is not easy, and we've had to alter the way we live our lives to accommodate this blessing.  Somehow, these alterations, though sometimes painful for a moment, are wonderful and remind me the path God is setting before us is up to Him... and He is Awesome.  So, we are thankful for our struggles.  We really are.  And we are thankful for the triumphs we reach, and the way our simple little life stretches out before us so dense with blessing.

Charlie amazes me daily.   His character is one we can all aspire too.  He is compassionate and tender.  He is in-tune with other people and what is going on around him.  He knows how to have a good time.  With learning academic kinds of stuff... he really struggles.  Letters, numbers, colors, shapes, they are just abstract concepts to him.  But he's got the important stuff down pat... Love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and, er, well, we're working on self control.   Charlie is an excellent family member, community member, a beautiful child of God.  A blessing to anyone who gets the chance to spend time with him.

I am so proud of him.  I am proud of the ways that God is able to use him in the lives of others.  I am amazed at the ways that our family has been gifted with relationship with all kinds of beautiful people through what the world would say are Charlie's weaknesses.  I am so proud of him as he leaves behind a wonderful chapter of his life with the culmination of preschool, and moves forward into something new... a new school, new opportunities to be a gift and light, a wonderful blessing to others, just as he is to us; and indeed, new opportunities to learn and be blessed by his community.  I am excited as the Lord shows us, footstep by footstep, the unique path He has us on as a family.


You know, as I wrap this bunch of wonderings up, this is what I think:

I think that when you have a child like Charlie, a child different enough that you are forced to make major adjustments to your personal intentions for your life... I think at some point in your parenting journey, you will finally find your only decent choice is to simply surrender to the path.  God is in control of our lives... we can fight it, or we can willingly submit.  I think the sooner we get to the willingly submitting part, well, that is when these gifts in odd little packages really begin to flower.  When you will look back on your former self, look back at the strange little moments in your life where you felt everything would fall to pieces, and long to speak the words to yourself that you now know from experience...

You can trust Him... He's got this.  It may seem contrary to what is good, but it's not.  It really is good.  Oh, and... Everything is going to be alright.

You know, there is nothing you can do to ensure you get the life you want or plan for.  So trust Him.  Surrender to those unexpected changes, and enjoy the gifts you are given.  The ones you never knew you needed.  The ones you never would have recognized.  This is Charlie's gift to our family.  Not obvious.  Not easy.  And yet, not matched by anything the world itself could offer.



Thank you, Charlie.  And Congratulations!  We are so very proud of all your accomplishments.  We eagerly look toward the future with you as we embark on new things together.
With All Our Love and Deepest Affection, 
Your Mommy and Daddy.

Sunday, July 1, 2012

First Hair Cut

Some babies hair comes in on top first, like a little mohawk.  Charlie's hair grew that way.

Other babies have hardly any hair, save for a few long strands down the back.  Calvin's hair grew that way.

Other babies know what's up and just go for the full on mullet.  Classic American Hockey Hair.  That's Miles.  The cutest little mullet you ever did see.

But every baby needs a hair-cut sometime, and Miles sweet little curls have been growing out for a while now.  His little mullet morphed from a sweet little pile of curls at the nape of his neck to sort of a long, straight flap with a curl at the end.  Finally, a few days ago he awoke with particularly crazy hair that resembled Wayne Gretzke a little too much for me.  Ya, time to cut the flap.

Lil' Wayne.

Well, last night we did it.  Popped a movie in our little DVD player thingy, and set to work.  He was a gem.  In fact, he did the best of the three boys as we proceeded with assembly-line hair cuts at the kitchen table (really, if you have a boy, bring him on haircut night and sit him on the bench with the others... I will Flowbee his hair and not even notice he is there... conversely, stay away with your little girls on that night.).

Before.

It came out great!  A neat, tidy little cut that makes him look mighty handsome.  A gentle right of passage... a physical cue that this little guy is not a baby anymore. 

Miles Benjamin, look at you.  You are another little trooper in our rank of little boys.  Many more big things coming for you my sweet.  How about your own bed in the boys room next?


After.

Friday, June 22, 2012

From Baby to Boy: A Calvinism

Tonight we had a little family jam session.  Calvin was free flowin' some lyrics:

"And the the ice... it is a solid... it melts and becomes a liquid...
Just like... a baby grows into a kid."


And really, if he was referring to the way he started off as a fat little cuddle-bug, snuggled on our laps, and how he somehow became this tall, slender being of constant motion and boundless energy (rarely snuggled on our laps), then ya... I suppose one could draw the comparison.


Thursday, June 14, 2012

Graduation!

Wow!  What a day!

He graduated with his two best buddies beside him.

Today, our son Charlie graduated from his Preschool program.

His version of "Take a bow".

We are very, very proud.

He kept telling people "Congratulations!" and "Happy New Year!".
More on this momentous occasion later, but for now we are going to go party with his sweet friend Brooke.

Good job Charlie!

Wednesday, June 6, 2012

Partners

Talking to Calvin about the meaning of the word 'partners'...

Calvin:  What is a partner?


Mommy: A partner is a person you work at your business with... like teamwork.

Calvin:  Is Grandpa Daddy's partner?


Mommy:  You got it.

Calvin:  Well, Charlie is my partner.

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