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


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.  ;)

Thursday, December 1, 2011


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.

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