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.

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