The New Glasses

How do you tell if a child needs glasses?  How do you figure out what prescription when your child doesn't yet know letters, sometimes knows pictures, and only plays the "picture game" when he feels like it?

Well, it isn't easy, and even with the expertise of our Ophthalmologist (yesssss! spelled it right the first time!) it is still a bit of a guessing game in the end.

At our recent every-other year check up with the Ophthalmologist (did it again!) we learned Charlie was farsighted with a significant astigmatism in each eye.  Other than that, both eyes are very healthy. 

At our follow-up appointment the doctor asked if he keeps his glasses on.  "Yes, most the time."  "Then we can assume they are the correct prescription," he assessed.  Works for me!

And so do these pictures:

He's watching a cartoon in the above photos.  We found this was the simplest way to observe whether the glasses were helping or not, because watching a cartoon requires that he focus his attention in one singular, unchanging direction.  Notice how he is squinting and watching the cartoon out of the corners of his eyes instead of straight on.  Well, this is typical for him in the way he looks at things, we just had no idea it meant he had a hard time focusing.

Until now:

Big difference!

Well those cute frames were the almost free pair we got with our insurance.  The choices were very limited, and Charlie doesn't exactly have a one-size fits all face.

Enter Specs for Us.  Frames designed especially for kids and adults who have Down Syndrome.

Our Optician office was so great to order these frames in for us special.  One of my main concerns about putting Charlie in glasses was that they fit him well.  If they don't fit well, if they are slipping down and bothering him, well, he has no qualms about flinging them to the floor and squinting his way through the rest of the day.

The Specs 4 Us glasses came in this week. We picked them up today!  We ordered a pair the exact same color and shape as his original glasses so as not to throw Charlie off (beware of throwing him off!).  They fit great, and look nearly identical to the cheapy pair.  If you look close you will notice the nose piece and temples attach to the lenses lower than the first pair.  This is handy for people with Down Syndrome who have a low/no nasal bridge.  Any glasses will slide down that tiny button nose of his despite how much we bend and fit the frames, but this way he is still looking through the lenses and not having to tilt his head back to see through them.  Such a simple solution to finding a better fit for kids with Down Syndrome (or any child or adult who has a low nasal bridge).

We are pleased with his new-new glasses.  And I think he is, too. 

So, there you have it.  Glasses!  He looks so handsome and grown up. 

Happy Mothers Day!

Two Things

This post is about two things at once:

What Charlie's Up To, and Kids with Down Syndrome and Eating Habits, because today one reminded me of the other.  So here you go:

One.  In our house we have three little beings who are "happening" all over the place.  For Calvin it's the isms.  Its the stuff that leaks out of his brilliant, imperfect little mind, and comes right out his mouth.  For Miles it's an energy.  Jumping.  Racing.  Playing.  With him it is always, "Hey mom, watch dis!"  And for Charlie it's what he's up to.  It's antics.  It's manifest imagination.  It's a constant, and innocently enacted, mischief.

We must maintain unfading vigilance with Charlie.  This little boy who is always happening.  Cheerfully, creatively, wonderfully... just with an underdeveloped sense of safety or preservation of property... and food.  So, I was not surprised at all when today I walked into the kitchen to find Charlie had decided to "make" himself a snack:

And here we are again, this time with a little portion control.

He was happy about his snack.  About the camera... not so much.

And all this brings me to point number two:  Kids with Down Syndrome and eating habits.
Let me start here:  When we talk about Down Syndrome with Calvin, we talk about genetics... specifically we talk about chromosomes.  We all have 46 chromosomes.  On those chromosomes is all the information our biology needs to make us just the way we are.  Also on those chromosomes are a lot of possibilities that may or may never be expressed.  Like a grab bag.  In the bag are things like heart defects, eye issues, thyroid issues, short limbs, almond-shaped eyes, etc.  We all have a chance of being born with or developing a trait or condition in the grab bag of possibilities.  But people with Down Syndrome don't have 46 chromosomes.  They have 47.  Extra.  And that extra chromosome adds extra stuff into the grab bag--i.e. anyone can be born with a heart defect or an intellectual disability, but people with Down Syndrome have a greater chance than people with the usual amount of genetic material.  Charlie has nearly all the possible grab bag traits relating to appearance--almond eyes, brushfield spots, short limbs, toe gap, cupid lips, low set ears, and even a centrally located hair whorl.  For health issues he has been fortunate to have avoided or outgrown most issues, low muscle tone and recently discovered farsightedness being the only issues that daily affect his physical functioning.  He is intellectually disabled which also affects his daily life.  Well, you get it. 

If every baby came with a list of probabilities of conditions, no one would ever want to be a parent.   Even "perfect babies" with ten fingers and toes are only so on the surface.

Well, eating issues are in the grab bag.  This is for many different reasons: low muscle tone (check), oral coordination issues (yep, check), tongue thrust (check), texture issues (check), reflux (check), developmentally unready (big check).  When Charlie was young we had a myriad of problems getting him to eat.  We had an oral motor therapist.  We worked hard and long.  Now, at age seven, I can say we have overcome all of those issues (well, mostly all).  Not every child who has these problems will, and that's okay.  But for what it's worth, for the parents coming up behind us, here are some things that helped:

1.  Learn to breastfeed first, then find out about Down Syndrome.  Obviously this situation is unique to us, but I am grateful that I did not know about Down Syndrome while enduring the sharp learning curve of nursing a first baby.  Charlie was very sleepy, uncoordinated, and really didn't feel the need to eat anyway, so the whole thing was a circus.  We had to strip him naked every 2 or 3 hours and rub him with wash cloths to stimulate him enough to stay awake.  Really, breastfeeding was a two person job for a while before I figured out my part, and he his.  I am so glad we did not have the added stress of learning a diagnosis, and the nagging thought that maybe he was just not able to learn.  Some babies truly may never learn how to do it.  That's okay.  I am not making a judgement or heaping guilt.  I'm just saying, it took the help and advice from experienced friends and a lactation consultant and a determined mommy and daddy to make it happen for us.  It was nice to be able to "put off" a life changing revelation in that particular moment.

The tooth brush looking this is called a "Nuk Brush".  His tongue thrust made getting food into his mouth difficult, combine with his inability to really be aware of where the food was.  The nuk brush helped stimulate his mouth and help him be aware of the food.  Also we could put the brush to the side of his tongue so his tongue couldn't push it right back out.  At this point he would only take a couple "bites" per meal before he became agitated and resistant.  We later learned this was likely because the food was causing great pain in his throat due to untreated reflux.

2.  Getting him on reflux meds.  As a baby, Charlie spit up all. the. time.  Seriously.  Friends and family just sort of knew to ask for the burp rag.  It did not matter how long since his last feeding, he could still up-chuck a fair amount of milk.  I learned from a seasoned mother that what comes out is only the tip of the iceberg.  Infants who truly have excess acid reflux are likely refluxing and swallowing it back down as often as when it ends up coming all the way out.  We could tell this was the case with Charlie as we would often hear him sort of "catch" something in his throat and then swallow.  Despite how common this is in Down Syndrome, we had to push our doctor to try medication.  At 15 months old Charlie would still only take a couple bites of food per meal, and then melt into tears--the food likely passing right over a very raw, painful esophagus.   I asked the doctor again, adding that our oral motor therapist felt it may be our main issue preventing him from accepting food, and he agreed to do a trial of medication.  The first indication it was helping was that Charlie immediately began to sleep through the night after having been a very restless sleeper up until that point.  After time for healing to occur (about 6 weeks) he miraculously accepted food without fussing and crying.  It was our first foray into "real" food.

A big ole' spit-up stain on the clothes.  It was like an accessory.

3.  It was very helpful to have a professional on board to guide us through helping Charlie to  be able to coordinate the muscles required to move food around in his mouth and swallow, how to sip from other things besides the breast, how to safely work our way up from puree, to chunky, to crunchy, to very tough and crunchy, to chewy, and so on!  We started to see an oral motor feeding therapist when Charlie was 9 months old, funded through our Regional Center program for infants and toddlers with special needs.  We continued to see her until Charlie was about 4 years old, able to manage all textures of food, and drink from an open cup.

This was pretty much just a lot of practice and mess.  He never did get coordinated enough to both tip the cup up and sip at the same time.  We eventually taught him to use a straw and ditched the sippy cup for good. 

4.  With obesity being a problem for adults and children with Down Syndrome, it is so important to just sort of not even go there with junky food.  We eat healthy, whole, organic foods to the best of our ability.  We garden.  We start putting salad on our kids plates when they're just toddlers, and we eat it ourselves.  Our feeding therapist gave us some advice:  She said studies have shown that if you put a food on your child's plate, it will normally take about 10 times of just having it on the plate for them to be willing to try it.  It's actually an interesting experiment to try.  Just don't say anything or your kid is going to make it into a point of contention.  I find sometime less and sometimes more with my guys.  Well, with Charlie, it used to take tens of tens a lot more than 10 times, but we just kept doing it.  Yes, for a long time he sort of got his own version of a meal, with veggies hidden in it anyway I could figure, but he finally started eating all that healthy, good food, and now does not even bat and eye before shoveling down a salad.

The straw cup, and taking a few independent bites.  Truly independent eating did not come until he could eat finger foods.  In the bowl is prunes and applesauce puree.  He struggled with constipation as a baby.

5.  Know what battles to just let go.  There are non-negotiables, like making sure your child is receiving good nutrition, and can eat and drink as independently as possible and safely.  And then there are the things that start to take more energy than its really worth.  For Charlie, we've scaled mountains to get to the point he is at, and the fact that he cannot, will not, hates to even look at a food that combines smooth textures with random chunks (think yogurt with fruit pieces), well, I just say we all have our likes and our dislikes.  Also, his swallow is still uncoordinated and makes a squeak noise, but he is not aspirating his food, so as far as we are concerned, this battle is won.  Just don't try to serve him any fruit yogurt.

6.  And last, my personal opinion:  Good, whole, healthy food is a gift.  An investment.  All the more when your child has that extra grab bag of medical possibilities.  Once you do what you need to do to get past the issues involving food and drink safety, self feeding, increasing textures and toughness, the rest is all modeling healthy food choices, involving your children in where their food comes from and how it is prepared, and not over loading your child with too many selections and fluff.  Keep a healthy rotation of real food in the house and make sure you are eating it yourself.  Better yet, eat together.   And hey, no shaming ourselves along the way, okay?   If we were parenting perfect children, then it would all be as "simple" as this, right?  Well, we aren't, they aren't, and probably it won't.  Remember... there is no use in sweating through the small missteps if you are still on--okay, near--a path leading you to your "big picture" goal.  I am often complimented on the good, healthy eating habits of my kids.  Truth is, if it were not for Charlie's struggles and the good advice of his therapist, I don't know if we would be doing so well.  All we did was eat the stuff we wanted our kids to eat, and put it on their plate whether we expected them to eat it or not that night.  Oh, and we keep junk out of the house, but that may be for my benefit more than theirs.  Anyway, Bon appetit!

T-ball

So we have a t-baller in the house!

Looks like his Uncle Russ in the shot, sly smirk and everything!

Decided to sign Calvin up with the Boys and Girls club for a fun community sport this year.  He is having a blast.  A very special something for him to do.

Here he is stopping a ground ball.  He's the one who obviously dove on top of it, sneakers in the air.

Now, this is my first t-ball experience, and let me tell you something I found out about t-ball:  It is a cheeks-hurt-from-smiling, go-home-feeling-great kind of event.  See?...

T-ball is non-competitive.  Every child bats each time.  The fielders are loosely positioned.  The goal is for each child to have a great time hitting, running the bases, and stopping and throwing the ball. 

In his new glasses!  A post for another day.  :)

There is only one hard, fast rule: Don't throw the bat.  Other than that it is kids whacking the ball and then standing there stunned before they remember to run... somewhere... over here?...  this way?...  Oh!  First base!  It is outfielders dog piling a ground ball like candy out of a pinata.  It is chasing frogs through the grass in left field.  And it is practicing ballet on second base.  It is perfect.

Calvin says his favorite part of the game is batting...

He also loves to run the bases.  He was so cute, standing on the base, spacing out between hits.  Suddenly the next player would hit, and Calvin would snap back to reality, running his legs in place before he took off down the base line.  Road Runner Style!  Meep meep!

Now, Calvin is on the smaller side for his team.  He's certainly not the most coordinated or in-tune with sports.  (And as we discovered, not the most practiced in standing "in-line"--he's all, what's a line?  Why do I stand in it?).  But he is thrilled with his ability.  He is happy to have a special thing to do.  He is drinking this t-ball thing up.  And I love that about him.

Lullaby

Baby's boat a silver moon

Sailing in the sky.

Sailing over sea of sleep

While the clouds float by.

Sail, baby, sail

Far across the sea.

Only don't forget to sail

Back again to me.

 

Baby's fishing for a dream,

Fishing near and far.

His line a silver moonbeam,

His bait a silver star.

Sail, baby, sail

Far across the sea.

Only don't forget to sail

Back again to me. 

(An American Traditional Lullaby)

From Around the House: A twist on Calvinisms

Verbal.  It's a term you hear in the special needs scene.  Is he verbal?  Non-verbal?  What is his main form of communication?  Charlie's first mode of communication was Americam Sign Language.  What a blessing it was to have come along in the Down Syndrome parenting journey at a time when teaching sign language to babies and children, hard of hearing or not, was something people were doing.  As with many children with Down Syndrome, Charlie's receptive language developed much earlier than his expressive language.  When he started using sign language to communicate with us at 15 months of age it was not only a relief to be able to understand his needs, desires, and preferences, it was a gift to be able to begin to see there was a capable little boy in there.  A boy who was learning despite his challenges.  A boy who could connect with me with language. 

In our house we have a range of "verbal" going on.  There is Calvin at the fore.  Oh yes.  I would say he is quite verbal, wouldn't you?  He started talking as a young toddler, and never stopped.  Sometimes he wanders into our room at 6:30 in the morning and just starts asking questions.  Verbal is his thing.  Verbal is how he learns.  Verbal is how he creates his world of pretend play.  Verbal is how he connects with the people around him.  It is all verbal.  So very much verbal.

Charlie and Miles are neck-and-neck in second place.  They are about equal when it comes to intelligibility of speech, and by that I mean how clearly they articulate so others can understand.  Their sentences are about the same level of complexity, but Charlie has an edge as to proper use of language and, of course, content (the wisdom that comes with age).  We have a saying in our house that goes like this:  "And that's okay!"  We don't feel sorry for Charlie that his two year old brother is closing in fast in verbal ability.  Charlie learns more slowly, and that's okay!  He is learning.  Is progressing.  Is a capable, creative, receptive person who, more and more, has something to say.  What is fun as these two sons of mine become increasingly verbal is the chance to hear what's on their minds. 

Anyway, all of this is to say the "Calvinisms" are increasingly accompanied by those of Charlie and Miles.  And, where verbal still fails, there is still always action.  So, "Calvinisms" posts are being converted to "From Around the House" posts--a mix of various "isms", snapshots, and photos from regular old family life.  A (hopefully) regular feature for our sweet family blog.  Ta-Da!  (Applause!)

So, here you go!

We were going out to the car to take Calvin to school the other day and the mailman was heading up the driveway at the same time.  Just then, Miles had the following revelation:

Miles:  Mailman hair not white.
Me: Nope.
Miles:  Mailman hair black.
Me:  Yep.
Miles:  Daddy hair is black.
Me:  (wait for it....)
Miles:  Oh!  Daddy is mailman!

Makes TOTAL sense!  ;)

Calvin calls our ground beef by his first name: "Mucho". As in, "Oh! Are we having Mucho for dinner tonight? He's some pretty tasty beef!" (Last year it was "One Eyed Willie".)  Super blessed to have an abundance of ground beef from Auntie Kassi's Humboldt ranch. It's Beef with a Name!

Charlie has begun to form lists in his conversations lately.  Here a couple:

On our way to pick Charlie up from school, the HSU mens running squad went sprinting through the intersection we were at.  This caused quite a stir from some really impressed little boys in the back seat, and Charlie says, "Wow!  I love running!  I love running like dinosaurs, kitty cats, and snails!" 

Charlie wanted to give a gift to his friend who was in the hospital.  When we were making a card for her he told me, "I want to give her rainbows, dinosaurs, crabs, and pirates!"

 

Mr. Charlie

This is just an update of sorts on the name-sake of our little blog here.

Our Charlie.

So, he's seven now.  In Kindergarten.  Growing up so much, learning new things, trying new things.  We are very proud of Charlie.

A new phase we have going on is independent dressing, over and over and over again every day.  Here he is wearing his swim trunks over some other shorts and a shirt of Calvin's.  He can also put his shoes and sock on all by himself.

I realize I have not shared much about our school experience this year.  He attended preschool (mostly) at a segregated school site dedicated to children with special needs age preschool through 23.  It is a fabulous school, but we decided to have him go to his "neighborhood" school starting in Kindergarten for a mainstream experience.  His new school was a big jump from the preschool environment, and a big adjustment.  In the beginning he did not have an aid, but it was soon apparent he needed an aid for his hours spent in the regular ed class.

Despite a start that needed some tweaking, I have to say, we are so glad we made this decision.  Charlie is flourishing.  He spends the first 2 1/2 hours of the day in a "special day class", which is a class with just students with special learning needs.  His best friend B, who also has Down Syndrome, is also in his class.  Actually, all three Kindergartners in the special day class have Down Syndrome.  They all sit next to each other in the front row of the class in tiny little desks complete with stacked and duck taped phone books for foot rests.  (How cute is that!)  In his special day class Charlie works on academics suited specially for his level.  He loves his teacher (and so do we!), and he has the special opportunity to have friends who are truly on his same "wave length", so to speak.

Here he is feeling clever about escaping his turn for a Flowbee haircut.

Gotcha!

At the first recess his 1:1 aid arrives, he leaves special day, and goes to Kindergarten for the rest of the day.  From the beginning the mainstream experience has been the most challenging.  Having an aid has made all the difference for him when it comes to being able to access the curriculum and what is going on with the rest of the class.  But despite its challenges, the experience has been wonderful.  An amazing investment in so many ways.

The children love him.  Having meaningful interactions with other children has been an area that Charlie is growing in.  I know he lacks confidence with a bit of a language barrier (he is very difficult to understand), and just the fast pace at which other children play can be intimidating.  But more and more he is playing with the other children, interacting with them, enjoying them.  And they... they just care for him.  Different or not, he is one of them.

Hiding again!  This time underneath the kitchen sink in the box we use for paper recycling.  I could hear muffled giggling, so first check the washer, dryer, and fridge--all places he's hidden from us before.  He keeps us on our toes!

His language has absolutely exploded!  He of course still does speech therapy as a part of his IEP, and clarity of speech is still a big issue, but his vocabulary and content of conversation is vast.  One of the newer things is he has started asking questions when he is curious about something, or just objects to something, "But why, mom?!"  He is using descriptive language to talk about his day, or to explain something he wants to do.  One thing I love hearing out of him is just how positive he can be.  I suppose with seven years of people cheering his every accomplishment it is no wonder he is so positive in his interactions.  "Great job, Miles!  You did it!"  We hear this out of him all the time in different scenarios.  (Okay, so he is not all happy, happy, joy, joy.  Oh No!  But hey, I can emphasize the positive.)

He is learning.  The Kindergarten curriculum is, quite honestly, way beyond his level.  BUT, even in Kindergarten class Charlie is working on many concepts along side his peers.  He recently mastered A-B patterns.  He is counting to 15, and counting up to five objects.  He is learning his letters, and can spell his best friends name (still working on his).  He is especially excited about Kindergarten science, which is all very physical and concrete.  He has explained to us the orbit of the earth around the sun, and more recently the life cycle of frogs.

Avoiding the camera in a way only a a kid with Down Syndrome can do!

He is nurtured.  I mentioned speech therapy, but Charlie also has a great Occupational Therapist at school who has helped him learn to grasp a pencil correctly, cut with scissors, button and snap, and the proper way to write letters.  He is enjoying music, art, p.e., gardening, field trips, and a host of other special activities that are offered at our little neighborhood school.

He is wanted.  How could you not want him?  We loved Charlie's old school, but it was a long bus ride from our home, so Ray and I were unable to "be a part" of his education easily.  This was our first reason for seeking an education at a neighborhood school.  Our second reason was that we agree with research that finds interaction with "typical" kids opens the door for a host of experiences and skills for many children with special needs.  At our school the mainstream experience is a routine and expected part of a day for a Kindergarten student with special needs.  His school has been enthusiastic about making sure Charlie has the support he needs for a successful experience (instead of letting an unsuccessful experience be impetus for not mainstreaming).  His special day class teacher is a-mazing.  And his Kindergarten teacher equally so.  The older students in the special day class love him, his Kindergarten peers all high five or hug him as we wave goodbye at the end of the day.  I just get the feeling that the whole school is proud and glad to have him aboard.

The "twins".  At age seven, Charlie is now in size 5T.  So is Calvin.  Charlie is about 1/2 taller... maybe.

Whew!  What a fun report.

Charlie is doing so well in so many ways.  He is challenging  (think 50lbs yet physically semi-dependent, uncensored raw-emotions, impulsive, forgetful, and very capable, yet not so clued in to safety or cause and effect) but the challenges are dwarfed by the Joy (think the Best Snuggles Ever, kisses for no reason, a willing "helper" who has such pure intentions, a magical imagination, and the brightest, giggliest eyes you ever did see.).  Every single day is a joy.  Lucky, lucky us.  I really need to do a series of updates to tell it all.  We'll see if that happens.  For now, I leave you with a little Charlie-ism from today:

We were driving through town to pick up Calvin from preschool when the entire Humboldt State University running team descended upon the intersection on their training run.  There must of have thirty guys all running pretty fast.  Such a sight caused quite a stir in the back seats.  Charlie was especially excited and yelled:

"Oh!  I love running!  Just like dinosaurs, kitty cats, and snails!!!"