Saturday, May 11, 2013

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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