Tuesday, May 28, 2013

Calvin Patch the Dastardly

It's his pirate name.  He made it up himself.  Calvin.

I don't know if anything could have possible prepared us for Calvin.  He is dynamic.  Even when Calvin is not physically moving (or talking!), you can still sense it.

Calvin spends most of his waking hours seeking and assimilating information.  Sometimes we wake up to his questions.  All. day. long.  Asking, probing, experimenting, observing, and yes, testing.  Calvin is driven by curiosity.  He is also driven by connection.  He gets his charge from connecting with people.  I think he would list 'community' right below food and shelter.  There is a lot to Calvin, but if I could only name two, these are big ones.  He wants the world to be known to him, and he wants to be known in it.  That's Calvin.  A mind that leap frogs itself through the days.  I don't know exactly where he is headed, but he is going there fast.

Which, in a round about way, brings me to this:

Not much surprises me anymore about Calvin, his interests, his motivations.  I almost expect to be impressed.  However, there is one thing that still sneaks up and surprises me about Calvin: his "five-ness".  He's just five.  Heady, outgoing, curious, but still just five.  He is the most capable brother, and is regularly asked to be so big in the chaos that happens around here, but the five-ness is still in there.  It still pierces through all the activity, all that maturity, and suddenly, whether the moment is convenient or not, the little boy who is just five needs assurance, attention, someone to look past a bedtime outburst and bring him back down to the ground.

It reminds me of something that he said to me once:

"Mom... I think God gave Charlie to me because I'm fast, but Charlie is really strong."

He was right.  He is fast.  And sometimes the fastness is scary when you're only five.  Those are the days when we go to check on the boys and find two sets of feet in Charlie's bunk.  A fast little boy who reached out to find a guard rail, and there, as always, was his big, strong brother.

Tonight he asked Charlie if he could sleep with him from the start.  Charlie was happy to have him, of course.  As they settled in, working the covers out between them, I see Calvin's little arms sneak around Charlie, and he said, "Charlie I love you so much.  You are a really great brother.  I hope you can teach me how to take care of animals some day."  To which Charlie snuggled up to him and replied, "I love spiders."  I sometimes agonize over the reasons life is more difficult when your oldest child is the one taking the scenic route to maturity.  Silly.  It was right for Charlie to come first.  He is a great brother.

Calvin will leave us one day, hungry for more knowledge, new connections, new challenges.  I don't know if he will try and fail a couple times like I did.  I don't know if he will experience home-sickness, or if he will ever find himself feeling baseless and questioning.  But I do know, rooted and steadfast, ready for a reunion-without-judgement of losses or failures, will be his big, strong brother Charlie.  An Anchor, and a constant.  Lord willing.

Saturday, May 25, 2013

What We Know, What We've Learned

I bet you didn't have an afternoon just like ours.  We had a picnic at our house.  A gathering of families who have a young child with Down Syndrome. 

My cheeks hurt from smiling.  

As part of the picnic, we prepared a page of "advice" on what we've learned as we raise our kids.  I forgot to put mine out.  Oops.  So, I'm posting it here.  It's lengthy, and not at all pragmatic, I'm afraid.  I can't help it.  This experience has been intense, wonderful, challenging.  I'm just a regular old person, not special, not the 'chosen' kind, so you can see why I shake in my boots when I consider the odds.  Odds are we would not be on this path--1 in 800--and yet here we are.  We hit the jackpot, and it makes me feel a wee bit sentimental.  Anyway, for what it's worth, here are a couple things we've learned from experience:

1.  A unique journey of discovery.

We began our journey with Down Syndrome feeling passionate that with hard work and consistency Charlie could defy the odds of developmental disability. All of my hopes and fears balled up in the process of development.  Developmental progress = Hope = He is going to be accepted, capable, not-so-disabled!  Or, Developmental standstill = Fear = He is different, he won’t fit in, he might be rejected.  Oh, if I could reach back in time to that young, scared parent.  Well, things have changed.  Tempered by the sting of disappointment, really, and also the many children we have met with special needs who challenge our views of how we see value, we have found a balance somewhere in between the poles of believing anything is possible for Charlie and discovering what is possible with Charlie.  No one told Charlie he was supposed to conform to our ideas… not even our hopes.  To compare a child to anything is poison to the soul.  To theirs.  To ours.  Charlie is not what I hoped, wanted, or guessed he would be as a person who has Down Syndrome, and certainly not compared to what we had imagined before we knew.  And that’s okay.  It’s more than okay, actually, because the person he is….  Is amazing.  Complicated, gentle, sensitive, goofy, super creative, an introvert reluctant to live so many moments of his life in the gaze of a community of people who love him.  The point is, Charlie has it in him to be Charlie, and we have the choice to support him as we discover together what is possible, or be tossed by the waves of elation and disappointment depending on where we arbitrarily set the benchmark of “good enough”.  We have learned to choose the former.  We work hard to make sure he has the support he needs to grow, and the rest is all high fives and smiles as we watch him unfold.

2. Alone, but not alone.

There are the mountain tops and the valleys.  I love my dear, long-time friends so much (I love you guys!!).  I cherish their love for Charlie and that they appreciate our situation is different and challenging.  Still, when my group of friends declare “River day!” on facebook, I feel alone.  I want to be there, but at this stage simply packing the car for a day trip gives me anxiety, not to mention the logistics of keeping Charlie and our token 2-year-old from disappearing on the river bar--it takes more physical and mental energy than I have available.  You can see why I tend to pass on River Day and other opportunities with friends.  Yes, there are hard parts.  Even so, one of the most precious things to come from the valleys are the friendships we make with others we meet there.  To be able to walk with someone is so much better than going solo.  So, here is some direct advice: Your experience parenting your unique child will be enriched on your good days, and made doable on your bad ones, if you will advocate for yourself and make those connections.  Your community of friends and family will always be a precious resource--ours are--but to have the chance to feel known in life's valleys is a treasure.

3.  Beauty for Ashes.

Charlie is a paradox: that extra chromosome was not intended to be there—his physical body knows it in cumbersome, sometimes painful ways—yet somehow in this unintended reality there exists potential for blessing that is hardly containable.  Even after seven years I am sometimes hit with the novelty of having a child with Trisomy 21.  I still think, “Wow!  I have a kid with Down Syndrome!  And the thought that follows next is, thank you, thank you, thank you.  It’s a path I never would have thought to choose for myself, or our family.  It is difficult, and sweet all at once.  I am changed.  Ray is changed.  Our younger sons get to learn from the beginning a different way of assessing value and creating acceptance.  And Charlie?  He is a great kid--an awesome son and friend and brother--and in orbit around him is that blessing-potential.  He doesn’t know it; he just quietly brings it with him where ever he goes. 

4.  This too shall pass………..  Eventually.
"This too shall pass."  It can be said about any child’s growing-up.  With our younger sons, the truth of this statement is more immediate.  Drastic, even.  Hard moments or afternoons or entire days pass, and the morning is always new.  Phases pass—the difficult and delightful—and suddenly you can hardly remember the sound of that squeaking little voice, or what it took to marathon nurse a sick toddler through the night.  With Charlie, the passing is slow.  His life is a film watched frame by frame.  The stages are slow.  There are unpleasant issues that seem to last and last, and there are sweet parts that I feel lucky to still have in front of me.  But all of these things pass in one way or another, just when you thought they would never leave the canvas of your life.  “This too shall pass”—the hard and the precious—and we are reminded to continue in hope for tomorrow as we cherish what we get to keep for today. 

Thursday, May 16, 2013

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. 

Saturday, May 11, 2013

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!

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