A Little News

I suppose one of the early tips we had that Reece was not developing normally was that his speech was not progressing beyond rudimentary sounds.  He said, “Da, da, da” about as soon as any of the kids and that is normally a baby’s first sound.  It’s just that he never progressed.  At one year old most other kids have already developed a fairly entertaining vocabulary but even taking into account the differences in children Reece was not making progress.

Two weeks ago, Reece began speech therapy with Karen Gannaway in Decatur.  I made my first trip with him just this past week and to say that it was entertaining would be an understatement.  It is always a little bit painful to watch him go through his physical therapy because he usually cries his way through it.  The therapists are not hurting him but just to see him in so much distress kind of hurts even when I know he is getting stronger and more mobile every time.  Speech therapy is a lot more fun for Reece and a lot more fun to watch.

Reece really has a thing for mirrors.  Karen has a full length mirror in her room and Reece simply loves it.  She has a hard time prying him away.  All his life Reece has been attracted to his own reflection.  He just wants to love on that baby in the mirror.  He goes right to the reflection and starts to give the baby in the mirror a big kiss.  I have no idea if he makes the connection yet that the baby in the mirror is him or if he just likes to be with others his own size.  Who knows?  It is fascinating and entertaining to watch.

Karen has Reece learning his “p” sound and his “m” sound.  We reinforce any attempt he makes at any sound but especially these.  The teaching method is not really all that different for Reece than it would be for any of us.  You make the sound and associate it with an object or an action or a person and the repetition in various forms helps him retain and understand the sound.  For instance, Karen blew bubbles for Reece then let him pop the bubble.  She would say, “pop!” whenever he would reach out and pop one.  Rhymes help too.  We are now doing the Itsy bitsy spider, row, row, row your boat and rock a bye baby among others.  And Reece is now giving kisses.  We worked on that one for a while but now when you ask for a kiss good ol’ Reece will pucker up and lay a big, sloppy kiss on you.  Very cool!

All of this is a learning experience for our whole family.  I am amazed at how well the other kids do with Reece and what a delight he is to have in our home.  Reece has less to offer and more to give than any kid I have seen.  There is not a thing he can do for you but he gives you so much in terms of joy and happiness and love.  I don’t know if I will ever understand that but I can observe it.  I guess that is just part of the miracle that he is.

Photos copyright Gary Cosby Jr.

Therapist Kale DeMent works with Reece while pointing out his reflection in a mirror. The ball helps him learn to use his legs and, in another position, his arms.

Somewhere in the back of my mind I have always thought that Reece would some day be normal.  He is in that truly adorable stage of life that all of our children have gone through only his phase is lasting longer than any of theirs did.  I am loving every minute of it.  But he weighs about 25 pounds now and he is getting to be a load to hold and carry.  He is making progress in therapy but he is not even close to walking yet.  He is scooting on his bottom all over the place but not crawling.  Still, I have harbored in my mind somewhere that sometime or another everything would just click and he would be pretty near normal.

The fact is he will probably never be normal as far as his academic and his physical development unless God just does some amazing miracle.  This just dawned on me this week.  My wife Patty was reading on Einstein Syndrome and she pointed out an article to me.  Miriam, the author of the site, was relating how she was trying to teach her 15 year old down syndrome daughter some basic reasoning skills in mathematics on the 2nd grade level.  There is a struggle now in at least the second year.  That is when the light came on for me.  I woke up to a new reality.  I realize that my son will always be special but he will never be normal.  I have worked through this realization and have come to this conclusion, I will always love my son no matter what.

Reece looks at therapist Melissa Steele while his mom holds him on an exercise ball. Melissa does all she can to make the therapy a good experience but Reece is not convinced.

We are truly blessed with Reece.  He draws love out of you like no kid I have ever seen.  We bring him into a room and people just light up.  They are drawn to him.  Everyone is drawn to babies but this is more than that.  I can’t really explain it.  I see all that going on and I know he has a special gift.  I have to resolve my feelings with the knowledge that his normal is going to be very, very different from anything I have experienced before.  I can’t really write how this boy makes me feel.  It is somewhat beyond words.  I love him and I know he loves me.  I can see it on his face and in his eyes even if I can’t yet hear those words from his lips.  Someday, someday!

Patty and I have much to be thankful for with Reece.  So many DS kids have terrible physical problems.  Reece has a very healthy body.  We finished our visits to physicians recently and the urologist just came in and asked Patty why she was even there.  He couldn’t understand why we would bring a healthy child in to see him.  His visit to the eye specialist was also very good.  What his initial physician thought was a pretty serious condition turned out to be nothing but inactive scars on his retina.  The doctor said there is no way to know why they are there or what caused them but there is nothing to worry about.  So we are very blessed.  Our boy is healthy and strong and making good progress in his physical therapy.  There is indeed so much to be thankful for.  And I am thankful.

Reece demonstrates his phenominal pout face during a therapy session at our home.

Just a funny note; Reece hates physical therapy.  My mom took him to his appointment last week and she said that when he went inside the building and realized where he was he immediately started to pout.  He has this awesome pout face.  The therapist, Kale DeMent, thinks Reece doesn’t even like her.  The other therapist, Melissa Steele, comes to our home and Reece doesn’t really like to see her either.  Still, he is making progress and getting stronger and moving better so like it or not the therapy will continue.  In not too many weeks the poor little guy will begin speech therapy.  They will be messing with his mouth and boy oh boy, he really hates that.  Good luck to whomever has to do that.  The pout will take on monumental proportions!
Photos copyright Gary Cosby Jr.  The opinions expressed in this blog are my own and do not necessarily reflect those of my employer.

Reece and Coach Stallings

Gene Stallings would be special in the state of Alabama even if he had never had a special needs son.  After all, Coach won a national championship while head coach of the University of Alabama.  That wins you a special place in the hearts of Alabama fans everywhere.  More important than any football championship though is the fact that Coach Stallings had a very special son named John Mark, or Johnny as most folks knew him.  Johnny had Down Syndrome and Johnny had to fight for every moment of his life.  Johnny passed away just a couple of months ago at age 46.

When Johnny was born, most people referred to those with DS as mongoloids or retarded, made fun of them or just ignored them not knowing what else to do.  Coach and his with Ruth Ann raised Johnny in a time before there were practically any programs available for families with special needs children.  Their friends largely didn’t know how to deal with Johnny so they just pretended he wasn’t there.  Times have changed dramatically from what Coach and his wife went through.  There are all kinds of help for DS kids and their families and it is largely due to people like Gene and Ruth Ann Stallings.

Today, Coach Stallings was in town for the dedication of a new Special Need Accessible Playground in Hartselle where we live.  He told stories of raising Johnny and I laughed and cried all the way through it.  I am crying just thinking about it.  I am so grateful for Reece’s health after hearing stories about kids who have had to struggle so much.  Coach Stallings said today that if God gave him the chance to go back 46 years and have a son who was perfectly normal or have Johnny again, he said he would take Johnny every time.  You know, I feel the same way about my son and we have only just begun our journey.  I hope I have 46 years to enjoy my special son though I would have to get pretty old to do that.  In fact, Reece will probably outlive me which is great.

After Coach Stallings finished his remarks, the allowed all the special needs children and their families to come up and meet Coach and have pictures taken with him.  Normally this would not really appeal to me.  Just because someone is famous doesn’t automatically cause me to want an autograph or a picture with them but Coach is different.  I see in him the kind of integrity, faith and love that I want to present to all my children and especially to Reece.  When we walked up to have our turn, I was holding Reece.  When he saw Coach Stallings he just reached those little arms out to Coach and Coach Stallings took him into his arms and just loved him and it was for real.  This was not just some celebrity putting on an act.  Coach just said, “He knows, he knows,” as he took Reece to hold him.  And I think in some way Reece did know. We spent a couple of moments there with Coach Stallings while we had our pictures taken and then we moved away so the next family could come up.

Coach Stallings said if he did anything worthwhile at the University of Alabama it was that he was able to raise the awareness and acceptance of special needs children.  I can say now that I am the parent of a special needs child that I appreciate that far more than the football championship he won there.  So Coach and Mrs. Stallings, thank you for who you are and for what you have done for special needs families.  Most of all thank you for loving your son.

If you are interested, you can read the store of Johnny and the Stallings family in the book Another Season by Gene Stallings and Sally Cook.

Most of the updates on my son Reece may not come as quickly as this one is but there is good news to report and I am very excited to share it.  Reece has done two really important doctor visits this week and his reports are good.  The number one concern I had for him was making sure his heart function was good.  We have read that one in every two Down Syndrome children has some form of heart disease or problem.  We never suspected Reece had heart trouble.  He has always been very energetic and has showed no signs of shortness of breath or blue extremities.  Never the less, I was tremendously relieved when a pediatric cardiologist declared his heart sound this week.

Dr. Israel in Huntsville saw Reece late last week and did what looked like an ultrasound on his heart.  I am sure it has a proper name but I don’t really know what it is.  All I know is that is showed a normal heart.  The doctor pointed to a small leak between chambers but also told us that is completely normal and most children have it.  The hole normally seals itself and no intervention is required.  We have to go back in two years to have a recheck done but two years is really, really good in my view because that clearly means there is no life threatening problem.

I have been reading the story of John Mark Stallings written by his father Gene Stallings.  Those of you in Alabama will simply know him as Coach Stallings, former head coach of the University of Alabama.  Johnny, as he was widely known, passed away this year at the age of 47.  He had Down Syndrome.  I have cried my way through about half of the book and reading his story and all the struggles they faced with Johnny’s heart has made me extremely grateful for the health of my little man.  The book is titled, “Another Season.”  It is a tremendous story and it has inspired me more than words can tell.  Our sports editor, Mark Edwards, covered Alabama when Stallings coached there and he knew Johnny pretty well.  Like most everyone I have met with DS, Johnny was a loving and caring man.  When Mark found out my son has Down, he bought the book and mailed it to me anonymously.  I knew it was from him and my thanks go out to him.

Finding out conclusively that Reece has a sound heart was a tremendous relief.  His next test was in the ear, nose and throat department.  Some of the time, improperly formed inner ear or constricted ear canals cause DS kids not to hear properly.  I was fairly confident Reece didn’t have hearing problems.  When he didn’t react to a sound, I assumed it was because he didn’t want to rather than that he didn’t hear it.  Dr. George Godwin III examined Reece along with hearing specialist Tammy Howell.  While Reece didn’t mind the cardiologist listening to his heart, he had major problems with people sticking things in his ears.  He doesn’t cry very often but he certainly let loose in the ENT office.  Had he not fallen asleep there would have been no way to have his hearing tested.

Overall, his hearing and ear structure appears excellent.  He has some high frequency hearing loss in one ear but it does not appear to be any major issue.  Again, I am so very thankful.  Hearing, as you probably know, is a key to speaking and Reece is not speaking yet.  He is making a lot of noise but he isn’t speaking and forming words like other kids his age are doing.  Of course, all children develop differently and at different paces so it is not a major worry but I still will be delighted when those sounds become coherent words.  Speech therapy is in the near future so I expect his speech skills to begin developing rapidly.

Reece does have a thyroid problem that he has to go to Birmingham for later this week.  He and my wife Patty will be seeing and endocrinologist to work out his medicine.  I can’t go to that visit with them.  He has one of the thyroid levels that are normally problems in DS children that is out of order.  I guess you have to be glad it is only one.  I don’t know much about this except that the thyroid is critically important to proper growth mentally, and physically, and it helps regulate cardiac function.  I will be very happy to hear that this issue is under control.  Reece still has to visit a urologist and an eye doctor to complete his testing so I am hoping that there will be more good news to share in the near future.

The photos from this post are obviously from the cardiologist and the ear, nose and throat doctors visits.  They were done with the EOS 5D and one is pretty lame technically.  The room was nearly completely dark so the shutter speed was down around 1/2 second.

Photos copyright Gary Cosby Jr.  The opinions expressed in this blog are my own and do not necessarily reflect those of my employer.

Today I want to introduce you to a very special little boy.  This is Reece.  He is fourteen months old.  Reece has Down Syndrome.  And I love this child like I didn’t think it possible to love a baby.  I delivered Reece with my own hands and it was an experience like no other.  Patty and I have eight children but he is the only one I have delivered.  We used a midwife for his birth and that is the only reason I could do this.  She was great and she was the first person to say Reece might have Down.

We had to drive to Tennessee to have Reece because Alabama does not allow midwifery.  That is a true shame but a topic for another day.  When our midwife evaluated Reece she found some indicators of Down but we had seen some of those same physical characteristics in our other children.  She said we should not worry about it but keep an eye on him.  So we watched and waited and all we saw was a precious little baby growing properly but his little eyes never lost their almond shape.  We became more suspicious when Reece didn’t begin to crawl, or make any attempt to crawl, by the time our other kids were doing it.  I guess the straw that tipped the balance was a lady who came up to my wife to offer her sympathy for our “special needs” child.

Patty said we should have Reece tested so we set up an appointment.  On July 3, Reece’s first birthday, he saw a Down Syndrome specialist.  He was positive Reece had the affliction but we still waited for the test.  Then it was confirmed.  While I guess Reece’s journey began at birth just like it did for the rest of us, our journey as “special needs” parents began two months ago.  There are many ‘ologists in our immediate future as we work to catch up on tests that many DS kids go through much earlier than Reece.  We have had his thyroid testing done and await results.  We have appointments with a cardiologist, a urologist, an ENT and an eye specialist. We are really blessed because Reece does not have any apparent physical defects like a defective heart which afflicts about half of DS children.

There is a long journey ahead with physical therapy and speech therapy.  Reece was evaluated by the Centers for the Developmentally Disabled and they found him at least 25 percent behind in all three areas of testing.  The photos with this post show some of his evaluation with Pat from the CDD.  At times it breaks my heart to know the struggles my little precious boy must overcome just to approach normal; however, it encourages me to see his little spirit showing through, his joy, his physicality and his social interaction with all his brothers and sisters.  In fact, all the people we have talked to have told us that Reece has been born into the perfect family because of all the stimulation and interaction he will have.  I don’t know what role God plays in all this but I do know I am extremely grateful that I get to be Reece’s dad.  Already, I can’t imagine life without him and Reece has enriched our family in more ways than I can say here.

I guess I was well prepared for being a DS dad.  As a photojournalist, I have covered many assignments with groups like Special Olympics and ARC and I have been around a number of children and adults with DS.  I have yet to meet a DS person who was not upbeat and joyful.  In fact, I can’t remember ever meeting anyone with DS that was not among the most loving people I have ever been around.  When we found that Reece had DS, I was not at all deflated.  I was, in fact, glad that I had been around enough people with DS to know in some small measure what to expect.

The Christmas before Reece was born we were gathered around in my parents living room spending some time in prayer after all the gifts had been opened.  Prayer together with all the family is one of our family traditions at Christmas time and some years it is really special.  As we prayed, I laid my hand on Patty’s abdomen and prayed over my unborn child.  I remember specifically prophesying that our boy would face many challenges in his life but he would overcome them all and that he would be a warrior.  At that time we had no idea if our baby was even a boy, much less that he would have Down Syndrome.  Little did I understand how true that word of prophecy would be.  I may not have understood what the Lord was saying that day but I can say that I am grateful to be a part of his life and I am grateful he is part of mine.

Today is not the last time you will hear about my special boy.  Reece’s Journey will be an ongoing documentary feature of this blog.  You can laugh with us, cry with us and I sincerely hope, pray with us as we and Reece grow up together.

Photos Copyright Gary Cosby Jr.  The opinions expressed in this blog are my own and do not necessarily reflect those of my employer.