Welcome to the Cleft Support blog. This blog was created as a resource and to provide support to parents with a child born with cleft lip and/or palate.

Wednesday, September 7, 2011

How a Honey Bear Changed My Life

There are many everyday, run-of-the-mill things that we take for granted - things we can do with our bodies like running, walking, chewing, etc.  We've known how to do these things most of our lives, and we usually never give them a second thought.  One thing my son couldn't do when he was born was suck.  Oh, we was born with the sucking instinct - the natural human reflex - but his body couldn't do it.  Because of his bilateral cleft lip, he couldn't completely close his mouth to form a seal on breast or bottle.  Because of his bilateral cleft palate, he couldn't form suction or keep air in his mouth. 

He got by, though.  With the help of a special bottle (the Habermann - now known as the Medela Special Needs Feeder), he was able to eat.  The bottle had an extra long nipple that you filled with liquid (milk, juice, whatever).  Then, you squeezed the liquid into his mouth, and he swallowed.  Eventually, as he got older, he learned to put the nipple on either side of his mouth and use his gums to "bite" the liquid out.  Feeding him with the bottle always required the utmost concentration because you felt like you might gag or choke him if he got too much liquid in his mouth.

By 8 months, we had to start weening him off of the bottle due to an impending palate surgery.  The surgeon said he wouldn't be able to bottle feed for awhile, that we needed to use something with a shorter "flange," and to start him on a sippy cup.  We had to remove the "sippy" mechanisms that keep the cups from spilling (because he still couldn't suck as his lip had not been repaired), and we also had to slit the flanges (the part you drink out of) in order to allow the liquid to come out easier.  We also had to use the ones with a soft, plastic flange rather than a hard one.  Using the same "trick" he did with the bottle, Gavin was able to "bite" the liquid out of the sippy, and thus he was completely weened off of the bottle at 8.5 months. 

Fast forward to right before his 2nd birthday.  His palate was now completely closed, his lip was completely formed, and we didn't have any upcoming surgeries.  At this time, sippys were becoming old, and we were getting tired of constantly having to take a cup with us everywhere we went.  It was time he started to learn to drink out of a straw.  It seemed simple enough - we'll show him, and now that he has the proper anatomical parts, he'd get it right away.  Well, easier said than done,

I can honestly say it was one of the most frustrating things I've ever tried to teach someone to do (and, I'm a teacher, I've taught a lot of things).  How do you teach someone to suck when they've never been able to suck their entire life?  We tried everything we could think of: holding liquid in the straw with our thumb and then trying to get him to suck it out of the bottom, giving him a juice box and squeezing liquid slowly into his mouth, and demonstrating how to drink out of a straw over and over to him.  He just didn't get it.  He didn't understand how to suck.

Finally, at my wits end, I mentioned it to his speech therapist.  Gavin was monitored by a speech therapist until he was two.  Even though he never had speech problems, they monitored him just in case, and the therapist actually provided some great tips that would help any child - but more on that later.  So, like I said, I mentioned it to the speech therapist.  I told her I was exasperated because I couldn't get him to understand how to suck out of a straw.  It was hopeless.  After giving some suggestions - all of which I had already tried - she said, "You know.  There's this thing we sometimes use to help kids learn how to drink out of a straw.  I'll see if we have some, and I'll get it to you."

Okay, I thought.  I'll try anything.  So, days later, I get a package from her.  In it is this:

Yep, it's one of those bears that usually holds honey.  Except it's empty, and they've put a plastic straw of sorts in the hole on the top.  I looked at it in disbelief.  No way is this going to work.  This is no different than giving him a juice box, and that failed horribly.  In spite of my skepticism, I took it out of the package,  put some juice in it, and gave it to Gavin.  I showed him how to put the straw in his mouth, close his mouth around it, and then squeeze the bear's tummy to make the juice come out (as per the directions).  I kid you not, within 10 minutes he was drinking out of the straw without even squeezing the tummy.

I cannot begin to explain my joy.  I was literally in tears.  I remember calling his dad and saying, "He's drinking out of a straw.  I'm so happy right now I could cry."  And, I was.  I never realized how hard it would be for him to learn a simple action like sucking or drinking through a straw.  To this day, I have no idea why the bear worked.  I had spent weeks and weeks trying to get him to suck out of a straw, and all it took was 10 minutes with that damn bear.  From that day on, we said goodbye to sippy cups, and he was a professional straw-drinker in a matter of days.    And, a year-and-a-half later, we still have the bear. 

1 comment:

  1. I'd love for you to add your blog to www.MiCleft.com We are group of mothers and fathers like yourself that are trying to raise awareness and share stories. We are based in Michigan, Please come join us! Registration is free.
    Please come check us out! we are on Facebook also, feel free to friend me also.

    Heather Heffley, I'm on your likes for fb!