Saturday, December 24, 2011

Christmas Wishes

As Charlie likes to say....

Happy Chwimas Everyone!




From our family to yours this Christmas Eve and Day, we hope yours is filled with much peace and delight and family and wonder.

We remember, and indeed celebrate with much joy, the birth of our savior Jesus today.

Love and warm wishes,

Ray, Kim, Charlie, Calvin, and Miles.

Monday, December 19, 2011

Yes it's time for more Calvinisms...

I haven't posted any Calvinisms in a while.  I post these pretty regularly on Facebook, and try to get them up here to share with the folks not on Facebook.  As Calvin would say, "So... here they are!"


I overheard Calvin remark "Oh a spider."  I look over to see him cheerfully watch a spider crawl the length of this arm.  Disturbed by this site, I rush over--calmly--and say, " let me get that for you" as I brush the spider away.  Calvin gives me a quizical look, so I explain that spiders are really neat to watch, but we don't want them crawling on our skin.  Calvin's response:  "Oh...  Why?  Do they have dirty feet?"


From the back seat on the way to Charlie's school:
Calvin:  Charlie, I would like to go to school with you, but I just can't.  I don't have Down Syndrome like you do, Charlie.  So that's why.
Charlie:  Oh....  I see.


At the Dick Taylor Chocolate Factory with Nana and Papa:
Calvin:  I like Madagascar Chocolate.  What region do you like your chocolate from, Nana?



At bed time, after reading the story of creation:
Daddy:  Can you boys think of some ways we can help keep God's world beautiful?
Calvin:  More hugs!


Calvin comes up with the funnest names for things when he plays:
One day he was pretending to care for baby mice.  He named them Joop, Cheese, and Zecharaymond.

Sometimes Calvin like to pretend to own a workshop.  I'm honestly not sure what they work on there, but when this is the case Calvin becomes Donny-belle, Charlie is a name that I cannot even begin to figure out how to spell out, and Miles is Konky-Konk.  Actually, Konky-Konk seems so appropriate for Miles at this just-learning-to-walk stage, that we refer to him as Konky-Konk often.

Just yesterday Calvin opened up a tire repair shop in the livingroom.  He calls it "Casa-Billy Tire Shop."


Calvin playing cars:  Jail is very, very jail-y, and you don't want to go there!  So, be nice, Mater!


Calvin asked me a question.  I answered as best I could, and must have done well, because Calvin proceeded to tell me that I "smashed that one on the head."


Calvin: Mom, when I turn 5 and get Down Syndrome like Charlie, may I go to his school?



And last, but not least, a Charlie-ism from our big boy who is talking more and more these days:
Mommy:  Charlie, what was your favorite part of the day?
Charlie:  My dragon!
Mommy:  Did you have any disappointments?
Charlie:  Um...  I  love cupcakes!

Monday, December 12, 2011

The IEP

I like to post about Charlie's IEP's for a couple reasons(that's Individual Education Plan, for the folks who are scratching their heads.  It's a special education thing, as you shall presently find out.):  One is it helps me to look back and remember all his milestones without having to raid my file cabinet.  And two, it sure is helpful to read about others experiences with IEP's and special education on the web when you feel like you're flying by the seat of your pants with all this stuff.  Well, I am definitely flying by the seat of my pants, but none-the-less, here is our experience, and the tale of a family trying to figure out... dun, dun, dun... Kindergarten Placement.



The IEP was actually back in November.  It was our first Triennial Review.  Every three years children who are receiving special education services have to have a big review with a battery of tests to basically re-qualify them for services.  The test results were kind of stage one of our IEP meeting.  In a nutshell--Charlie is very, very slow academically (still learning colors, letters, numbers, counting, etc. at almost age 6), he is about age 3 or 4 for language comprehension, about age 2 for expressive language, with some additional speech issues to sort through in regard to intelligibility.  He is about age 3 with fine motor skills, and about half his age with other developmental skills.  He far excels in social skills, and was particularly complimented on his compassion for other students, and ability to think of others needs.  This area was rated to be about age 5 or higher.  He is healthy.  His vision is perfect.  Hearing is perfect.  He is the star student in P.E.  He is good natured, compliant most of the time, though starting to participate in some "age appropriate" mischief with his buddies (which is secretly pleasing, as it shows developmental appropriateness).  All in all, he is about half his age in development.  In some areas a little more, some less.  It places him in the category of Intellectually Disabled (as opposed to a more mild assessment of Developmentally Delayed).  Because of the multifaceted nature of his disability (it includes all areas of his development), his disability is considered Sever.  Beyond these results and labels, it was noted that Charlie "has all the pieces in place" for his development to unfold in a more or less normal way--just a lot more slowly.  This is a big deal for him.  There are no big behavior issues, nothing that is just not coming along at all.  He is quite delayed, but moving forward in more a less a "normal" fashion, if we were all to take two years to move forward one year in development.

This, to me, is a stellar report.  Really.  And we are very proud of him.  Beyond that, we are excited for the years to come as all this developing and learning emerges.

The second part of the meeting was spent setting academic, speech, OT, social, and self care goals for the next year.  Stuff like, "Charlie will learn to cut a thick piece of paper, staying within the lines of a half inch defined area, with little to no assistance, using regular scissors, four out of five trials."  These goals crack me up, because they have to be written in a way that they can later me measured.  What if we wrote our own goals for our children like this... "Calvin will void in the toilet, standing up, keeping the urine within half in of the toilet seat edge, four out of five times."  Really.  It's just kind of amusing to me.  Anyway...

The last part of the meeting was spent discussing Kindergarten placements.  So...

Everyone agreed that even though Charlie could stay in his current preschool level class for another year, he is just beyond it.  Academically Charlie is not catching on very quickly.  He can recite the ABC's, and can identify some letters.  He can read his name.  He can count, but does not know what it means.  He knows the color blue, and sometimes others.  He is finally picking up shapes.  But all these things we've been working on since before he started preschool at age 3.  So it is just going slowly.  (I'm fine with this, by the way.  My feeling is Charlie will get it eventually.  We just keep plugging along.)  For this reason he needs a class that is able to accommodate this slow rate of learning, and his need for a hands on approach.

Socially Charlie is doing wonderfully.  He is a compliant student who can follow directions.  He understands most everything that is going on around him.  For this reason he needs a class environment where there are "typical" children who will challenge him to further develop his social strengths, and his ability to be part of the greater non-disabled community.

The biggest issue with all this is the "perfect" public school environment with these two main needs are, well, non-existent.

At his current preschool class, which we are so happy with, there are no "typically developing" children.  No chances to interact with children who could demonstrate "normal" behavior for children to emulate, or to demonstrate "normal" speech for children to hear and try out for themselves.  We have been creative over the last three years to create our own "inclusion" for this reason.  At first we had him half time in a normal Children's Center where he did wonderfully, though he was quite behind in skills.  This year we have joined a homeschool field trip group and we are able to take him out of school (because we wrote it into his IEP ;) for field trips.

But this leaves next year as a big question mark.  Our choices as of now:

Moderate-Severe classroom at a school that is very far away where there may or may not be a minimal chance of "inclusion" in a regular classroom.  We may or may not be able to write into his IEP that he will continue to field trips with the homeschool group as kind of an "independent study inclusion". 

Mild-Moderate classroom at a school closer to home where there would be lots of inclusion, but less of a supported environment for a very slow learner.

Homeschool with a Charter school that has all the therapies Charlie needs and a stipend for supplies and extracurricular activities.  A supported education comes from one to one instruction from me (Mommy) and also weekly visits with a resource teacher.  Inclusion is accomplished through being with his family for instruction time, on campus enrichment courses, continuing our field trips, and after school activities such as music lessons, or swimming clubs, etc, and the vast homeschool community.

Straight-up Homeschooling with no Charter, and a big question mark on where/how therapy could happen.  Inclusion would be through the homeschool community and home education with his ever-so-typical brothers.  Supported learning environment comes from his mom.

I am realizing this is really a two part (or many part) story, so I will stop here and visit our pros and cons list.  Meantime, if you've experience with this kind of stuff, well, feel free to comment and tell me your opinions and share your stories or thoughts.  We are sort of in "paralyzed about this huge decision, and praying tons, and waiting mode" at this point.  But you'll hear more about all this next time.

Saturday, December 3, 2011

Visual Schedules

The coolest thing (okay, not the coolest thing, but a cool thing) about being the mother of a child with special needs is the community of support.  Some of our best friends are parents who we've met because they are walking a similar path to ours.  You should hear us "special needs moms" when we get together.  We greet, we hug, we sit down and start talking... as fast as we can... without taking breaths... so we can enjoy to the max all the things we've needed to talk about with other moms who speak our language... who know our struggles... who appreciate our triumphs with an "insiders" perspective.  It is so awesome.


Well... I was looking a while back for a visual schedule to put on the fridge.  Something for Charlie that will help him to grasp our daily routine.  He is a visual learner, as are many children who have Down Syndrome, and a visual schedule --like he has at school--helps with transitions in the day.  It helps him take charge of himself and his own responsibilities when he knows what is going on.  As part of Charlie's recent IEP (a post for another day) we included a goal to get Charlie going on following his visual schedule with less prompting from adults.  Helping him learn to take care of himself.

Magnets are just the right size, and very sturdy.

So anyway, I had been looking for a schedule for home, finding all the usual utilitarian icons, when I came across the cutest, neatest visual schedule ever.  The two sets available were not quite right for us, so I contacted the owner who was willing to make a custom order for us!  We talked it over and decided this would be a great investment for Charlie, and also having other little guys in the house who cannot read, but can read pictures.

The pictures on these are so lovely, yet easy to "read".

The owner is a mom of a child with special needs who created this product to fill a need, and founded Visual Schedules: Promoting Structure, Independence, and Self Esteem.  And the result is so beautiful.  And functional.  I am not a product promoting blogger, but I have to plug the invention and innovation of another special needs mom who just gets it.  And what she has created is so special.  You get to choose your child's gender, ethnicity, and place of worship, for a product that is unique, looks nice on your fridge, and is super functional for children who can benefit from having a visual schedule.

"Let's move that field trip up to 9am."  The schedule comes with clocks, too!

And how is it working for us?  Great!  It especially helps after school when Charlie get's home and is tired and hungry and eager to play and has a tendency to just come unraveled.  We go immediately to the fridge and see that "first it is potty time, then snack, then play."  Meltdowns are so much less frequent when Charlie has a firm grasp on what is going on.  The picture schedule is right there for him to reference when he forgets.  No guessing.  Nothing lost in translation.


The big reveal...  He like it! 

Calvin loves the schedule, too.  We set out his schedule in the mornings, which in our custom order includes magnets for our homeschool subjects, so even though homeschool is a very loose term at this point in our house, we throw those up there and make sure we do some fun, educational projects together to accomplish that.  On Charlie's homeschool days (guess I have a bit of updating to do), I find the schedule particularly useful to help him know the flow of the day, what is going on, and what we are doing and when.

"Time for snack, Mom!"

So, a little plug for another mom making a difference.  Thanks for working with us, Joann.  We appreciate it so much.  And we are totally enjoying our schedule--and keeping on track when Miles isn't "rescheduling" us.  ;)

www.VisualSchedules.com

Thursday, December 1, 2011

Colorado


Getting behind on blogging is like getting behind on the laundry.  Eventually you have a huge pile, and no time to catch up.

I'm behind on both.  But lets hope I can take a little bite out of each this week.

We went to Fort Collins area, CO for Thanksgiving week.  It was an amazing trip out to visit Auntie Laurie and Uncle Tim on the lovely Golden Gaits Ranch.



It was more than just a trip, but a much needed respite. 



And experience of a lifetime for the boys.



We spent many hours out on the ranch, doing "ranch chores" and hanging out with "the kids"--Tim and Laurie's horses, Breggo, Stridor, and Cody.



We flew on an airplane.  That was a new experience with kids.  Charlie is now two for two with airplane trips having some kind of bodily fluid disaster.  We will spare you.  We just will.  Let's just say this go around we had extra clothing for him (his first trip on a plane at 18 months he rode home naked... oops).  What we didn't have were spare jeans for Daddy.  Next time.



We went up to Estes Park in the mountains, and to Rocky Mountain National Forest.  Amazing.  So inspiring.  We were in the shadow of the Rockies all week when we were not in them.



Thank you, Laurie and Tim, for such a wonderful time.  We needed that.

Wednesday, November 16, 2011

Happy Birthday to Miles Benjamin

A year?  Really?  A whole year.  Gosh, Miles, it's hard to believe.


Look how big and clever and wonderful you are!


You are a people person.  You delight in connection, casting glances our way always wanting to know we are with you in your experience of... whatever your doing at the moment.  A community kind of guy.


You love puzzles and toys that you can manipulate and figure out.  I always wondered why we ever bothered giving toys to your brothers who would pass them up for exploring other items or things... until you.  You love toys.  You love to figure them out, never tiring of them, recreating how you play with them every time.  Your favorite toy is a set of nesting cups which you work tirelessly to nest in the correct order, or stack until they tumble down.  I love to watch you.


You can say "Mama".  I love that.  You can say "bye-bye" and wave.  You are learning some signs as we casually teach them to you.  "More" and "all done" so far.  You understand so much, though.  Today you understood me when I said, "Show brother your cup."  I can hardly wait to see you come into your own this year.  Connection is so important to you, and communication will only open up that world for you.  I can tell already that it is satisfying to you to work out what's going on and be a part of it.

It was Uncle Russel's Birthday, too!

You love your brothers.  I wish you could see your own face when you see them.  You follow them all over the house, walking just like they do (even though crawling is still much faster).  (You learned to walk last week.)  You imitate them in play, and try as you might to join along.  We even suspect you might be left handed like Charlie.  They are wonderful role models for you, and love you so deeply.


What a year Miles!  Happy Birthday sweet son.  We love you so very much!

Thursday, November 3, 2011

Before it becomes too awkward and too late...

I need to get these photos up of Pumpkin Patch, and Harvest/Halloween activities.

You can be sure a blog slow down means a life traffic jam in this house.  We've been rather busy on every front imaginable.  Personally, I'm freakin' out on the inside.  Luckily, these guys are super wonderful and have a way of keeping my mind on what I'm thankful for daily.




Mid October is Pumpkin Patch Time.  I think every year we get a picture of Calvin atop the Hay Maze.                        It was a beautiful day.

Charlie was SO excited for the tractor ride out to the pumpkin field.

Is this an adorable family, or what?  Thankful.

Uncle Russ and crew.

We went with the boys friends from Sunday School.  These girls usually make it into Calvin's family portraits he draws.  They are precious girls.

Here we are at Charlie's school for the Costume Parade on the 31st.

A dragon, a rockhopper penguin, and a koala-sheep-mouse type guy.

On to the Harvest Festival at Grandpa and Grandma's church.  Grandma is dressed up as a "Train man", and Grandpa is just dressed up as himself.  That's his REAL Conductor uniform!  Wish the kids would look at the camera!

Everyone says this little one looks just like his Grandma Kathe.  I think so too.

Monday, October 24, 2011

A post about this guy...


This guy here is 11 months old.

Ya I know.  I'm still scratching my head, wondering how this happened so fast.

In a month we will have his first birthday, complete with the customary cake-of-his-own.  We will let him stuff himself silly with sugary frosting and all that sweetness.  Though, really, he's not much of a sweets kinda guy.  His favorite foods are the green ones.  Kale and spinach...  I know, right?

Last year at this time we were waiting on pins and needles for him to arrive.  He was due November 5th, but it just seemed like he was ready.  Like he was going to come any hour.  We were so happy to make it to 37 weeks thinking he may come sooner than that.

And then we waited.  And waited.   We waited nearly two weeks past his due date.

Finally, on November 16th, Miles arrived in a storm of a labor.  An event that was protected and scary, navigated and traumatic all wrapped in to one.

I hear of parents who receive a Down Syndrome diagnosis for their child after birth having a hard time in the days leading up to that child's first birthday.  All the memories and the trauma threatening to be relived in some kind of visceral wash of emotion.  We never had that because we did not receive Charlie's diagnosis until he was 2 months old.  But I admit, I am having a taste of this as we approach Miles' birthday.

It's weird.  We went to the pumpkin patch the other day (need to post those pictures!), and I was remembering last year...  We went to the car wash on the way, sure a baby would be born any day and we would not get to it for a while...  This year, on the hay ride out to the pumpkin field, I just could not help but feel so connected to that impatiently waiting version of me a year ago.  My stomach has been all in knots over so many re-lived events just lately: harvest time, the world series, getting the kids costumes ready, the anniversary of my Grandma's 100ths birthday, and her passing a few days before it...

Or, the other day I took Miles to a nursery to hang out with other babies for a bit, and he freaked out, and I ran to rescue him of course.  I feel so sure his intense separation anxiety is due to those first hours of his life when he was separated from his mama, crying, scared, cold, hungry, in pain.

Stuff like that.

The first time I ever held him was amazing.  A last ditch attempt to calm him and see if he would start breathing better before packing him up for an ambulance ride to an NICU.  He was placed in my arms, and I just tucked him inside my gown and nursed him.  I don't know if I was holding and comforting him, or he was me.  But we've truly been an inseparable, deeply bonded pair ever since.

And I always wonder...  Was it that crazy birth we had that made it like this for us.  My heart is so compassionate toward our little Miles.  And he is so intent on being in my arms.  Do I love him too much?  Silly to ask, I know.

Anyway.  This is a rambly and disjointed post about our Miles boy, because he is on my heart and my mind all month long in endearing, uncomfortable, lovely, and confusing ways.  It feels like a birth month more than a birthday.  There was so much anticipation, topped with the most biologically and emotionally intense experience of my life, and followed with the sweetest little fellow I ever did know.  We'll end it November 16, with a big party for the little boy who we are so happy to have in our lives.

Tuesday, October 11, 2011

If your lunch time lacks excitement...

You might try having your brother feed you.


Something green and gooey will help.


Brother will say it's Monster Slime...


And he will deliver it via Front Loader.


Make sure you laugh hysterically with every bite.


Mmmm.  Spinach and Potatoes.


Tease him a little bit.  Turn you head.  Squeal.


Above all, enjoy the mess.  Brothers allow for awesome messes.

Wednesday, September 28, 2011

So that's ONE in Diapers!!!

I gotta say, I doubted the day would come, but...

CHARLIE GOT IT!  He did it, and he's done with diapers!  Well, in the day time, anyway.

I am so proud, and over the moon.  It has been a looooong road (nearly 3 years of potty training!), but he was just ready, and he did it, practically overnight.

He started wearing underwear at school this Fall.  He has a set schedule there, everything is predictable, and he learned when he could expect to go.  He has been dry all day most every day at school.


Home was still another matter.  We tried taking him at natural breaks in our home activities, but we just don't do the same exact schedule day after day here, so he just did not try to hold out for a potty opportunity.

Enter The Potty Watch.  An ugly, silly little watch shaped like a toilet.  It "sings" every 30, 60, or 90 minutes.  The day I gave it to Charlie I put it on his wrist and told him, "When the watch sings it will be potty time," and I set it for the 30 minute interval.


Well, it sang, and Charlie danced his little self to the toilet to go.  30 minutes later it sang again, and again he went.  30 more minutes went by... you get the point.  He's been dry, save for a random accident here or there, ever since.  That was a week ago.  We even went on a road trip over the weekend, and he stayed dry.  He's going every 60 to 90 minutes now, no problem.  He's wearing boxer briefs, and looking all slim without that bulky pull-up.  He is so proud of himself.  He knows he is Big Stuff now.


He's got a little ways to go, yet.  He needs to learn to initiate his toileting himself.  He has a lot of trouble managing his clothing, still.  And then, there is night-time to conquer (seriously, how did any of us ever learn to wake up and use the bathroom at night?!).  But we are getting there.  We've got the biggest chunk of the puzzle down.  Wow.  It's party time!

Thursday, September 22, 2011

His trendy little self.

Oh my.  This smiley boy is sooooo cute!

Look at him in his new amber teething necklace.


Daddy says it makes him look like a true Humboldt baby.

You know... all-natural, and stuff.

Wait.  Is that the beginning of a dreadlock there on the side of his head?

Just kidding.  (We don't want to push Daddy over the edge.)

Oh my goodness.  He is just so sweet.

Thursday, September 15, 2011

School Year

Well, are we on week three or four of school?  I can't even remember.

The first day of school came, we all woke up at the usual early hour, had breakfast, then mentioned to Charlie that the bus would come soon, so we needed to get him dressed.  He complied happily. He did a few joyous dances about the bus coming.  Kissed everyone soundly.  Then bounded down the driveway with Daddy to board the bus to school.

Everything has gone equally as cheerful and 'old-hat' as ever.

There is a new Speech Therapist, and Charlie has not warmed up to her just yet, I hear.  I doubt it will take him long.  He has been coming out of his shell with so much more ease these days.  A lot of the former anxieties seeming to have melted away.  He is so mature all of a sudden.


There is a new playground at school.  It sounds awesome, but I haven't made the drive to see it.  School is like this whole other life my son has.  He can't really tell me about it, so I only hear snatches of that life from his teacher in e-mails.  It is sort of weird, and makes me sad that I am not there in it.  It is his, and it exists away from us.

Charlie is wearing UNDERWEAR at school now.  And doing awesome with it.  It does not go nearly as awesome at home.  At school the schedule changes seldom, and he knows exactly how long he needs to hold it.  At home we don't have that rigid time-line of events, and despite taking him often, he rarely holds it if he needs to go in between potty breaks.  He is getting better, but yesterday peed his pants 3 times in two hours.  We're working on it.  We are going to give him a watch with a timer to see if he will learn to hold it until his watch beeps, and then take himself.  Like I said, he is so mature now, and it seems like potty independence, and so many other skills, are at the brink of his ability.  He is so close.

This is Charlie's last year as a preschooler--a bonus year to shore up some basic skills (he's 5 1/2 now).  It's sort of a big year.  To me it feels Huge.  We are facing big decisions about Charlie's education for next year.  I feel lost in it all, and pretty stressed out about it.  Yeah.

We found out the local class for moderate to sever disability that we considered is really not an option, unless we want him to be the only kindergartner in a class full of 10+ year olds sitting at desks doing academic work.  No thanks.  He's small for his age to begin with.  And sit at a desk?  Not likely.  Not appropriate.  Not fun.  The only option for him in our town then, is a mild to moderate program.  Everyone I speak to thinks he is probably just at the brink of moderate... just might be a good fit.  Otherwise our options are the school he is at now, or one even further away.  (His current school is 30 minutes away one way.)


I had hoped so much to bring Charlie to school closer to home.  He is gone too long, too far, and too disconnected for me to do this for the long haul.  So we are praying.  We are investigating every avenue including homeschool, independent study, and moving to be near the schools in Eureka.  Of course if the mild/moderate program is a fit, then none of this worry will really matter.  There are other considerations besides those listed, though.  It just feels like a mountain.  We are trusting God with this, always in prayer about it.  But I'll be honest, in all the patience I've learned as direct result of parenting this beautiful Charlie-boy, this is one situation where I just have a hard time being still.  I want this decision to move forward.  I want to know what is ahead.  And at the very least, I wish everything seemed less murky and more promising in my heart.

The good news is Charlie is oblivious to all of this.  He is enjoying himself so much, a cherished part of his school community, a bright boy who loves to learn and please others and make friends.  I always wanted more inclusion for him, and yet seeing him thrive at his school where he has friends--true friends--who are at his level, makes me wonder if we should move him... or what we should do.  I wish these decisions could be made for us... Like God would simply cross out all poor options in some divine fashion.  I think, though, that we are going to face some tough choices, and we will need to put blinders to all factors, pressures, and desires of others or our former selves, and look at our son and family and make the best decision for us all as a unit--a family community.  Afterall, Charlie could be with us his whole life long.  We need to do what is best for us all.  I wonder what that will be.

Anyway, to be continued I guess.  Things are good.  Especially for our special boy.  He is doing fantastic... and loving his wonderful life.  And we are, too.
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