Hello, my name is Drew Williams.  My wife, Lisa, gave birth to our first son, Mason, in July of 1999.  He was delivered full term by Caesarian Section due to his prone position throughout the pregnancy.  Mason was 5lbs. 10 oz., 18 inches long, and a beautiful little baby.  One of the nurses in the delivery room discovered a cleft of his hard palate (roof of the mouth) while she was cleaning him and checking his mouth.  Blood work was ordered for a genetic screen as a routine response to the cleft palate.  Mason had great difficulty taking a standard baby bottle as he was unable to form any suction due to the cleft.   Luckily, an OT at the hospital recommended a Haberman feeder which creates a vacuum of sorts on the nipple allowing for a more efficient suck response.  We took Mason home two days later with no other complications or concerns and started life with our baby.  Lisa was very concerned about the genetic test and “knew something was wrong”.  I discounted her theory thinking she was over reacting to the situation.  Six weeks after Mason was born, our pediatrician gave Lisa a FAX result during an office visit.  Not knowing anything about this disorder, the doctor told her to take Mason home and love him, but not to expect much from him.  He was very typical of the insensitive, passive doctors most all parents with special children have experienced.  Lisa and I cried for quite some time after the diagnoses as our preconceived dreams of a child were shattered into an unknown, isolated world.  The same night we learned of Mason’s diagnosis, we jumped on the internet as most everyone does these days.  We were very fortunate to find some information, but more importantly some people we could email for information.  After sending out several emails, we were phoned the next day by people from around the world including the UK, Sweden, and several people here in the U.S.  Once we learned more about the reality of the situation, we were able to begin doing something about it. Mason started services at two months including physical therapy primarily since this was his weakest area at the time.  We felt like he would have a very hard time with everything else if he did not develop his motor skills as soon as possible.  He never really rolled over, or crawled.  At six months he began to sit if placed in position.  He loved any toys with lights and music, and played all of the time.  Mason could snap his fingers before 12 months, which was one of the most interesting accomplishments.  He started scooting around at 18 months using his legs and arms to move forward in a sitting position.  He learned to throw balls and everything else very early, and has quite the arm even to this day.  His walking began around two years with a toddler walker and independently around two and a half years old.   At three, he could climb ladders to the slide, go up and down stairs without assistance.  He is very timid with all of his activities, especially the new ones.  Medically, Mason was very fragile for the first couple of years.  He was hospitalized twice for pneumonia, which made him very weak.  Once we learned about the cause of the pneumonias, we were able to head them off before the hospital was needed.  He had a lot of breathing problems for the first few years, which he has grown out of more the most part.  His cleft palate was repaired at one year, and he had abdominal surgery to repair his non-descended testicles and botched circumcision.  He had serious issues with feeding for the first year and a half, however, once he began eating solid food we couldn’t keep enough in the house.  He now eats all day every day, although he doesn’t seem to gain any weight (seems like a blessing to me).  He is still well under the growth charts, however, we really stopped paying much attention to that some time ago.  Now four and a half years old. Mason has become a relatively healthy kid with few illnesses over the past couple of years and not nearly as severe.  Mason now has two younger brothers, Ryan 2 yrs, and Nolan 12 months.  He and his brother play together very well (as well as any two brothers would).  We believe that having Ryan so close has really helped to push Masons development forward faster than the daycare or any therapy could have.  All of our boys have been in daycare since 8 weeks.  Mason has kept up with Ryan for the most part.  Ryan is the brave one who jumps in head first while Mason learns from his brother’s mistakes.  Mason’s receptive language continues to amaze his mother and me.  He understands almost everything we tell him or ask of him.  Modified signing is his primary communication, although he does have several modified words in which all hard consonants are omitted (i.e. car is arrr, daddy is aahheeee, etc.).  He has learned to manipulate us as does any other four year old.  Strange situations, people, and places still cause Mason to retreat to a protective area (usually the arms of mom or dad).  He is very protective of his personal space and frequently throws a tantrum when he doesn’t get his way.  I could go on for hours about Mason and his accomplishments, and short comings.  As everyone with a 49er boy knows, we feel like we are the luckiest people in the world to have been blessed with his care.  He has been the mildest mannered, loving child we have ever been around.  Mason loves to be held and cuddles up to us every day.  Lisa and I have grown so much as people throughout this process, that we would never have been as strong of a couple or individuals had Mason not come into our lives.  We are very open to communication from anyone with questions or concerns regarding their boy.  Our personal contact with other parents and children had been some of the most rewarding and informational experiences we have had.  Please feel free to contact us anytime, and if you find yourself in Las Vegas, we would love to get together and share stories. Story submitted by: williamsxfive@cox.net

 

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