Monday, November 28, 2011

What is going on with the Baker Fraggles?

The boys Cale and Cole are pretty much growing up as all brothers do. Moments of camaraderie and moments of intense rivalry. Meaning Cole tells Cale what to do and Cale most times ingnores him.

When you let the notion of Fragile X go and ignore the speech and the little ticks they are quite normal little boys. They play, watch tv and have boundless energy. They have moments when they behave and do as they are told and moments which strain the limits of your patience. The are curious and plunder and pillage at times but also bring you books to read and songs to sing. Laying their little heads on your shoulder and giving the cure all for a grandparents impatience and frustration.

That tender and well placed little kiss on the cheek. Followed with a "luv you". Generally those will melt away any angst and resets the patience button.

Cale's vocabulary continues to grow and his speech is better. He is absolutely the cutest little boy when you ask him a question and he answers, hands in the air, "I don't know". Then smiles with an impishness that demands you give him a big hug.

They had their picture along with Erin taken with "
Sir Topham Hat" at the day out with Thomas. Marcia made a print and put it on our Bathroom mirror. Now the first place they go is to the BR to see "Top Hat". Cale points and calls "top hat, top hat, Cole-man, Erin. When you point to him in the picture and ask who is that, he replies, "me".

That is a difference between Cole and Cale. For a long time when you pointed out Cole to himself in a picture and ask who is that, he replied Cole. Now Cole answers me, but I wonder if he did not learn that from Cale.

Cole has learned to dribble and shoot the basketball and to kick the soccer ball. He learned to propel and steer his trike. Not by pedaling but putting one foot on the the rear axle and pushing with the other. He learned this on his own with no coacing, just watching Erin.

Cale has pedaled his trike a little but still prefers the Fred Flintstone method. Cale has almost mastered self propulsion in the swing. He can keep himself going for more than a few minutes.

Funny how things our kids learned, the swinging, riding trikes, throwing and catching a ball are readly available from our memory banks. Sure we remember the first big fall off the bike or the first catch with a glove or a football. But not all the attempts before they were successful. I do not think I will forget this weekend when Cole held up the basket ball and said Pappy you "catsh" it. Then the throw and then the response, "throw it, Jim, throw it".

Then there was the shot from 10 feet in to the basket. Of course the basket is on 3 feet high but still nothing but net. Go Cole. All the while Cale is swing the golf club at the plastic golf ball. Boys being boys and kids being kids.

Not to leave Erin out. She and Granny cooked and made pizza. She played ever so gently with the "china head" doll that Marcia has preserved for so many years. Ever threatening anyone who held it not to drop it. And Erin didn't, she gently wrapped in a blanket and put it down for nap before shifting in tomboy mode and playing ball with the boys.

Thanksgiving dinner at Thomas and Betty Rozier's was great as usual. They have such a great family.

All that said it was a great Thanksgiving weekend.

But it does not end there, Marcia picked up Erin and Cole from school. Cale had a doctor's appointment. When I got home they were all having a go at the stairs when I turned the corner from the den. Then it was come upstairs Pappy from Cole and outstretched arms from Cale wanting his hug. So I oblidged both. Those stairs have gotten steeper and larger in number.

Cole brought his "Thomas tunnel" book down and pulled me to my chair all the while saying "sit in chair, read Jim". So we did. Soon Brandi was calling for them to load up for the ride home.

Then he did it again. Pulled the strings loose from my heart. In perfect enunciation "I want to stay here with Pappy".

That's all from the doting grandpa for today.

Thanks for stopping by!

Friday, October 28, 2011

THURSDAY, who knew?

Who knew that the Thursday would turn out to be so great. The word much more than the day of the week.

Brandi posted this on her facebook page.

"As I'm sitting in line at Cole and Erin's school waiting for them to be let out when I spotted one of Cole's teachers bringing him to me early, probably so her arm wouldn't go limp today trying to hold on to him. Before he reaches the van he says "Hello". I open the door and he says "Hello, How are you?" I look forward to hearing those words everyday. After he got into the van his teacher ask him what today is. He holds his head down with the biggest grin on his face while his arms are going 90 to nothing and says "Thursday "! Can't explain the excitement going through my body. Then she asked him what day is tomorrow. She said "today is Thursday and tomorrow is".......and he said Friday! How awesome is that! He has only been in school for about 2 1/2 months and has learned so much. Couldn't be more proud of my Cole-man! :)"

How could just the words Thursday and Friday be so powerful in the life of a young mother and her young son? The answer is simple if you know what Fragile X Syndrome is. The emotions stirred are only understandable when you have seen the range of effects FXS has on the children and adults that have FXS.

Putting two days together and answering the questions correctly by this little 5 1/2 year old boy is a milestone to be remembered like a 18 month old uttering "mamma" for the first time. Cole has come so far from where he was just year ago. It gives us hope as to how far he may go.

Cole, Cale and Erin are loading up as I type to see their favorite character in person. Thomas the Tank engine at Veterans State Park in Cordele.

Cole loves Thomas, Erin did also when she was 3 and 4. Cale watches Thomas and seems to be more interested lately, but he is more of a Toy Story fan.

Erin knew the 4 or 5 DVDs we had by heart by age 3. You could turn the sound down and she could repeat every word of everyone. She would sing along with the captions.

Cole knew the DVDs by heart at that age as well even though he did not repeat the words. He would be playing with a toy while the DVD played. Just before their was a crash he would turn to the TV then say "uh oh", then turn and play with his toy again. The same when a song was sung on the DVD. Cole would jump up just before the song began, stand in front of the TV and wave his arms and dance to the tune in perfect rythym.

Cale will stop and dance and even sing a few words but he is just not as enamored with Thomas as Cole and Erin. That may change. We will have to wait and see. He is making great progress with his speech and vocabulary. He seems to have a broader
range of interests than Cole.

The only other thing to report is Cole pooped in the potty. While in his swing last week, he told me he wanted down. His words were, "want down Pappy. Have to stink".

I unbuckled him, he jumped down, ran inside, pulled his pants down, sat on the potty and pooped. Marcia had to help with the clean up. He pulled his pants and came back out to the swing where I was with Cale. Marcia came out and announce what had occurred. I told Cole-man good job and as usual he clapped and gave a big smile then told me to push him in the swing. Marcia called Brandi to tell her the news. She was as excited and proud as we were if not more so.

This is the strangeness of FXS. Don't know that he has done it again. Prior to this time he would go to the potty if you ask him, but would not do anything other than pull off the TP and flush the toliet. But at least you know he knows how and we can hope he will decide to make it a regular habit.

I will let yall know how the Train ride went when I get a report.

I wouldlike to thank again everyone who participated, donated or attended the "team up for a cure" golf tournment.

Prayers, Pennies and Perseverance will one day provide a cure, please support research at

Saturday, October 15, 2011

One Year

One year ago I started this chronicle. We found out that our second oldest grandson was a Fragile X child. Now a year later we have two more grandchildren with Fragile X Syndrome. They have had it all along we just did not know for sure, I guess.

Erin, our granddaughter, was tested and she has a full mutation. We are blessed in that she is extremely smart and does well in school except for math. She is shy and vivacious at the same time. She has her moments which we now understand more.
She is such a joy to all us, especially Marcia who always wanted a daughter.

Then this week after being told over a year and half ago that the youngest, Cale, had PDD-NOS but that was all we now know that he has the mutation as well.

My Granny Baker, had six children. She out lived all but one. A still born at 16, lost her fourth son when he was 4, her first and fifth sons in their fifties, her third son when he was sixty.

She told me during a time of great heartache in my life there was never a day without heartache and never a day without joy, just some days the heartache would crawl over the joy. My children and all parents of Fragile X children or parents of any child with a seriously debilitating condition have days when the heartache crawls over the joy. Days when it is hard to hold your chin up and be positive for their children and their spouse. Days when the question is "why me, why my child?"

I once read that you are only as happy as your unhappiest child. This is so true and is one the heaviest burdens of parenthood. When you have a child that is in pain and you cannot ease it the pain manifests itself within you also.

The anxiety of the unknown for our Fragile X kids brings on the heartache. Seeing their happy and loving faces, getting big hugs and seeing them progress in the smallest of ways brings on the joy.

Then I look at parents with children who have other conditions. Cerebral Palsy, MS, Muscular Dystrophy or even worse terminal illnesses. Things could always be worse.

I have said this before but Brandi is a wonderful mother but even more a special person. She has to deal with the imbalance between heartache and joy everyday. She has to overcome the frustration and temper her expectations in an never ending tug of war.

Brandi and Chris have and continue to take the issues before them head on. While it is a heartache for us watch the frustration and anxiety in their lives, the joy crawls over that heartache in witnessing the strength of their character and their resolve to make life as good as possible for their special children.

Tuesday, October 11, 2011

Hey Pappy!

Marcia and I were blown off the the beach so we came home early. Monday morning we rode to Walmart to get the pictures from the "Team up for a Cure" golf tournament. We had just entered the store when I saw old freind, Larry Jarvis. I waited for him to finish at the pharmacy window so I could speak to him. Small turns of fate are what makes life grand.
If I had not waited to speak to Larry I would have missed what happened next.

While waiting a small hand patted me on the rear and a small voice said, "hey Pappy". I knew immediately it was Cole. I turned to find him reaching for me to pick him up for a big hug. I spoke to Larry and then Cole and I were off for a Walmart adventure.

Cole was there with Brandi to pick up some medicine for his cough. So why Brandi waited at the pharmacy Cole and I left her and Marcia for a tour of the Walmart.

We went to the hunting section where Cole spied the gloves. He loves gloves and picked out a pair of camoflauged ones. We looked at the Camo shirts but there were no small ones.

From there we went through the toy section. Cole pickup and looked at all the Thomas,Cars, Spongebob and Toystory toys and books. He named off the characters and put them back on the shelf. He was not in a purchasing mood I guess. Then we went on a search for Granny.

Granny can almost always be found in the children's clothing section. So that is where we went. She was not there but Cole wanted out of the buggy to inspect the racks, looking for Thomas.

He first went to the rack with the rugby stripe shirts. He has several "Thomas" shirts with those
stripes. There was not any with Thomas on the front. He turned to me and ask,"where's Thomas". Then he found the toy story shirts and the spongebob and cars but no Thomas. He made his way from rack to rack plundering through them just like he was an old shopping pro.

Alas he hollered, "Thomas, Pappy". There was a set of Thomas pajamas much like the ones he sleeps in at home. He was excited for a moment but then continued his search for more "Thomas".

Then you know who showed up. Granny joined the search but I guess neither found exactly what they were looking for.

Brandi found us and she had Halloween costumes for the kids, was still waiting for the prescription. We gathered up the rest of our needs and went to the check out.

Cole and I checked out first. Then Brandi and Granny. Cole came home with us as Brandi waited for the prescription.

We read the Thomas stories and he repeated the parts he knows. We took apart and reassembled the animal puzzles. Of course we went up and down the stairs a few times as well.

Marcia picked up Erin from school and soon there after Cale came running through the back door. They all got a dose of medicine.

Erin watch TV while Cale, Cole and I played with the puzzles. Cole and I read a Thomas story to Brandi and Marcia. Then we went to my chair where Cole went to sleep in my lap as we read the book.

We had to wake him when they headed for home. Cale climed right into his car seat for a change and waved goodbye. Cole got in his chair but was still in a slumber induced semi coma.

All in all it was a nice ending to Marcia and my wet, windy anniversary weekend.

Wednesday, October 5, 2011

Just a quick note tonight.

Last Saturday Chris and Brandi, my childrenm and Charlie and Patty Cosey their friends and the son and daughter in law of former Quitmanite, Charles Cosey organized and held a golf outing to raise funds for Fraxa.

Due to their efforts and determination and the good will of their friends and community over $14,000 was raised. They sold t-shirts, cookies, cakes and pies as well as holding raffles and silent auctions.

92 golfers participated and they all said they had the best time ever at a golf scramble and were looking forward to next year.

Several other families and children affected by Fragile X were in attendance as well.
Jan Hinkley and her son Steven and June Lawson and her son Clay Daub were there and were an uplifting force for those of us with younger FX kids.

Of course Charlie and Patty's son, Colten, was there along with our grandchildren, Erin, Cole and Cale. Erin has just be diagnosed as having a full mutation.

Cole and Cale were my shadows all day as we visited with people attending and rode the golf cart on the course with their Nana, Barbara Rozier. Mema and Grandaddy Rozier were there as well and took in most of the gold at the first hole from under the Oak Trees.

We were provided with a perfect golf day from above and much love and happiness from the golfers and volunteers. A special thanks to Aunt Becky who along with Brandi photographed each golf team.

I would love to name every volunteer and golfer but alas and thankfully their were to many for me to remember them all.

Thanks to all that participated in person and in spirits. Prayers and Pennies are needed and in that order to make the cure a reallity. Thanks for both.

More to come, but Marcia and I are off for mini aniversary honeymoon. Number 41.

Sunday, September 18, 2011

I want to go home in Daddy's truck

Sometimes the smallest of moments give the greatest amount of hope. Friday night produced one of those moments. Cole, Cale and Erin came to the house while their Mommy and Daddy went out to celebrate Brandi's Mima's birthday.

Of course we went through the normal session on the swings with Cale and Cole and then went in to have supper. Supper was followed by Cole carrying his new Thomas book and "demanding" it be read to him as he holds like his teacher would. Cale was playing with the cutout puzzles and watching "teebee".

Cole showed Marcia how he exercised at school. He got on the floor and said "exercise" then laid no his back and made like he was pedaling a bike.

Cole and Cale could no doubt solve the nation's energy crisis as the expend their's and ours nonstop.

But to the small moment. Brandi and Chris return around 8 and soon after one or the other said it was time to go. Saying something like get ready to go. Well Cole had arrive at 5 or so with his mom in her van and his Dad had arrives at 6 or so in his truck. Chris's truck is parked outside the privacy fence. Cole has not seen the truck.

When someone said, "lets go", Cole spoke up clearly and concisely,"I wanna go home in Daddy's truck. Don't sound like much of a moment much less great until taken in the context of Cole's Fragile X.

For Cole to want to go home in daddy's truck, he had to remember that he came in Mommy's van an hour earlier and Daddy arrived later. He then made and assumption.

That Daddy came in his truck.

Brandi and Chris got the test back on Erin and it was positive for fragile X. Erin has not shown any signs of developmental disabilities, but she is shy and has high anxiety in some situations. Now that we know some of the reason we all can approach situations differently with her.

She is still sweet and my Pill as I call her.

Pride is not a word I often use nor an emotion that I often display. But I am so proud of my children, Brandi and Chris. They have given a huge responsibility and challenge. They are meeting it head on.

Monday, September 5, 2011

Baker, Cole Baker

What is your name? Baker,(pause)Cole Baker is the answer in a Bond, James Bond sort of manner.

I have posted in the past that Cole-man would not say his own name. Well now he does and it is a Bond like manner.

He has seemingly always been able to call everyone by name, even answering what is your Granny's name with Marcia, what is your Nana's name with a broken Barbra. And the name he seems to like to answer with the most, what is your Papaw's name.

He surprised me this past weekend as we were asking about different names from the Thomas characters to Cars to his new love, Toy Story. After a few questions of what is his name running from Woody, Buzz and Rex, Cole ask me, "What is Papaw's name?"
Followed by a "Kirk" and then a big smile and look of accomplishment. He returned to asking and answering "what is Papaw's name?" Everytime with a big smile as he said with voracity and perfect enunciation, "Kirk".

Cole and Erin were here with us for Saturday a week ago when we had a visit from our oldest Grandson, Andrew. Erin and Cole were both glad to see him and their Uncle Ben as were Marcia and I. Erin, Andrew and I made plans for a fishing trip on his next visit.

Back to Cole. He is one perpetual motion machine. He loves to play and he loves to "read" his books. He almost has a book in his hand unless he is swinging in beloved swing on the carport. He has pretty much memorized his three Thomas books and his Toy Story book. He intently listens so he can chime in on the words he loves to say.

Top Hat aka Sir Topham Hat has long been in his vocabulary. Top Hat is all he would say when ever the character appears in the video or on the pages of his book. Well, now he is pronouncing it "Topham Hat" still no Sir but a well enunciated Topham Hat.

Now back to that swing. Cole loves to be pushed as high as the swing will go. Mostly I give him a few good pushes then sit down in the rocker and give him a boosting push as his arcs become shorter and shorter. No longer will that do. As I sat down in the rocker from swinging him, he shouts "get up Pappy, stand up Pappy". All this in one sentence. Well I had to get up and send him sailing again. As I headed for the rocker Cole shouts again, "No, Pappy standup, push me".

You have to really understand how much a leap in communication this is for Cole and me. So, I jump up and push again. This time I sit down even though I am being commanded to "stand and deliver" so to say. I explain that Pappy is hot and tired and I will push him while seated.

Cole allows me to push him one time from the seated position then declares "I want down, Pappy". Which is not new and so I rise to slow the swing and release him from the safety straps. Well, Cole looks me in the eye and says," I want to swing, push me".

Cole has become devious, he has baited his poor Pappy. He has learned how to get me out of the chair and receive the push that will send him arcing high into the air back and forth in his swing... I guess I am an easy mark, you think.

I wish you could all have a visit from Cole-Man. I hope that some will visit him at his golf tournment Friday, September 30th at 1:00 pm at the Francis Lake Golf Club
in Lake Park. You can contact Cole's dad Chris about the Tournament here

Thanks for indulging a doating grandfather and thanks for your support.

Saturday, August 6, 2011

Cole is now in school. He has completed three days. I picked him and Erin up from school Friday afternoon. When I pulled up to the pickup area one of the teachers called for Erin Baker, but up popped Cole first dragging Erin up by the arm, she had a death grip on him, practically leaping over other kids. "Jim, Jim, Pappy he hollered as he climbed in the open door.

He went directly to his booster seat and Erin buckled him and off we went to visit Granny on the way home.

"Granny, Granny he called as we approach Marcia's office, it just up the road on the way home. "See Granny" Cole called. He knew Granny would have a snack. We stopped and had a short visit, heading on home.

I just knew he would want to get in the swing when we got there. We pulled in and I got him out of the seat. He started toward the swings to my dread. He turned and said "its hot Pappy". Then he went up the back steps, slung open the screen door, opened the back door and said "come on Pappy, want Coke".

Guess what? He got him some Coke and I sighed with releif that there would be no swinging session in the 102 degrees heat. No sooner than I had put ice in the cup he had taken his stool out of the cabinet. He has a little fold up stool he uses when he washes his hands in the kitchen sink. He went directly to the pantry, climbed on the stool and pulled down the Chex Mix bag. "I want chips" and so we had Chex mix.

Cole and Erin then went into our bedroom and turned the tv on to Nick. Erin sitting in the chair and Cole perch up high on the end of the bed with his cup of Coke and cup of Chex. I-Carly didn't hold his attention long before he was asking for a Thomas DVD.

I went to the DVD stack and pulled out one. He took it, looked at it and said "Thomas workshop, want Treasures". These are the things that amaze and puzzle me about Fragile X. Cole can't read a lick (I think) but he knows which DVD is which and he has several. He looks at them and calls them by title. Friends help out, Milkshake, Treasures, Workshop and others I can't remember.

He also has several Thomas books with illustrations and one or two lines of text on each page. Although he can't repeat the complete line on each page. He knows what line is on each page. And he has three or four books that can correlate the words with the illustrations. But then on the other hand he still can't or won't say his own name.

I look at these things and then remember that at age 3 he hardly said more than a dozen or so words. Now he is five and knows all the charaters of Thomas, Spongebob, Toy Story by name. He follows the stories, laughs, sings and talks to the DVD. He has come such a long way.

He still comes to my chair and says " lap, Pappy, lap". Use to be to climb up and take a nap. Now he climbs up with his book and "reads" to me and then tells me to read to him.

The bottom line. He is learning. Learning differently from "normal" kids but he is learning.

In a previous post I mentioned that Chris and his friend Charlie Cosey are organizing an golf tournament to benefit FRAXA. Things are starting to come together.
Several sponsors have been established and several teams have already signed up.

Chris and Brandi along with Charlie and Patty are hoping to make this an annual event and establish a south Georgia Chapter of FRAXA. They are working hard at it and I want to thank those who have offered and given support.

Here is a link to the Team up for a Cure sight.

Here is a link to FRAXA.

Thanks for visiting and as we say in the south, Y'all come back, ya' hear.

Sunday, July 3, 2011

It is me again. I have been thinking about all of you reading my ramblings about my two youngest grandsons. Last month over 340 people veiwed this page. I hope they all read the last entry and some of the earlier ones also. I hope that all the visitors take away something that will make them smile, but mostly something to remind them of those children who need special attention. Not just my grandchildren, but all children with physical and/or mental deficiencies.

For the parents and family of Fragile X children I hope they something for the stories I try to tell be it solice in, inspiration from, amusement or anticipation just as I do in theirs when I read their post in Fantastically Fragile X.

We had a visit from Cole, Cake and big sister, Erin. They came for an overnight on Thursday and statyed until Brandi picked them Friday evening.

Thursday evening we played in the sand, in the swings, on the trikes and in the cars just like every other visit. This time though Cole began to get the idea about the pedals on the trike. He actually pedaled for a few feet before deciding it was easier to use the "Fred Flintstone" method. Poor little Cale is so short he can't reach the pedals yet. But Cole is really beginning to grow. His little short "Baker legs" are stretching out. Both Cale and Cole have big feet and hands like their Dad and his Great GrandDad, C.B. Grimes. Anyone that knew Mister CB, knew he was a gentle giant, still standing over 6'4" in his late 70s.

Cole's vocabulary and the use of it continues to grow by leaps. His new phrase this week was "I wanna do it myself". He is becoming more independent. Taking off and putting on his shoes, dressing him self and attempting to pour his on "coke" and "ketchup" and "ranch".

I put those words in quotes because he uses them. He will tell you immediately when you serve him any dish, "I want Ranch and Ketchp". And of course, "coke".

I am going to purchase a "youtube" ready video camera. I must so you can see Cole balance on the rim of the plastic blow up pool, bounce up and off it like a diving board doing a cannonball. Splashing his siblings and his Granny. He seen to never get tired of climbing out and doing it over and over.

Cale on the other hand does not like to be splashed. He stands in own little kiddie pool and puts on a show of indignation when the cold water hits him. He is such a little actor. He can feign displeasure with such vigor all the while impishly smiling awaiting the attention he knows is coming.

Soon after we went in side Cale pulled the pillows from the sofa and dragged me out of my chair and on to the floor for a round of wrestling and bouncing off Pappy. He is so full of energy and runs endlessly to somewhere he never seems to get.

Not to leave Erin out. She helped Marcia cook supper. Spaghetti, fried green beans and garlic bread. Erin stirred the sauce and buttered the bread, actually hot dog rolls cut in half. She is such a smart little girl and independent minded as well.

Back to Cole. Marcia reads bedtime stories to Cole and Cale as they lie in their beds. She uses a small flash light with the overhead light off. Now Cole sits in her recliner 25 or 30 minutes at a time holding the flashlight on his favorite books, turning the pages and guoting the words as he knows them from the pages. His favorite is Thomas's fishing adventure. He quotes the lines "Thomas's boiler hurts", "fish in his boiler". He has certain pages he likes more than others. While his is not reading the lines, he has memorized what page they are on and recognizes them from the illustrations, I believe. He continues to learn although in different ways than what would be considered to be normal. Last week he drug a chair to the screen door and began to unbolt the the crossbolt latch. This is certainly something he figured out on his own. He was successful at it as well.

While he still does not readily recognize colors, he has memorized the colors of the train engines in the Thomas the tank engine books and videos. You ask him what color is Thomas and he will say blue, but then you can as what color is Gordon and he will almost always say green. When you say no, he will say Gordon is blue. Same with Percy and green. But he alway says Toby is brown. The other side of this is Cole will ask Marcia, "what color Gordon". Marcia will say "what color is Gordon?". Cole will answer "Gordon is blue".

He recognizes Woody, Buzz and the horse (which I can't remember) and call their names as he points out the characters on the t-shirts or bowls or cups.

Here again for all of those who are still with me, Cole is making progress communicating and in becoming more self sufficient. So is Cale who in many ways is ahead of Cole on the learning curve. I have great hope for them both.

On Friday,September 30th, Chris is organizing a golfing event to support research into cures and treatments for Fragile X and related disorders such as accompanying Autism. I hope to post more complete details about this in future posts.

If you would like to contact me about the Golf event or anything else about this blog, please send me and e-mail to



Monday, June 20, 2011

My grandsons, Cole and Cale, spent the night with us Sunday. They stayed with Marcia today while Brandi, their mother, took Erin, their sister, to the doctor.
I use this blog to talk mostly about Cole and his progress with Fragile X.
Little brother Cale has a diagnosis of Pervasive Developmental Disorder Not Otherwise Specified(PDD-NOS). This seems to mean he does not have Fragile X but has something we just don't quite no what yet.

Both boys are happy little guys for the most part. They run, play, ride trikes, love their swings. Cole loves Thomas the Tank engine and operating the DVD player.
Cale watches the DVDs intermittently, likes to dance to music and will throw little "fits" occasionally in an attempt to get attention and his way. He usually puts on a cry but is smiling all the time.

They spent time in the blow up pool while here today. Cale likes to get in the water but is a little timid about actually playing in the pool. He did do a little more splashing than in past visits.

Cole on the other hand is a fish. He bounces off the sides of the pool into the water and breast strokes under water to the other end. It is amazing. He holds his breath instinctively. When he pops his head up he blows out his breath and takes a deep one in before submerging again. He does something on every visit that amazes us in spite of his Fragile X.

Today's visit reminded me that they only come to visit every week or so and leave Marcia and I wore out, but they are cared for daily by their mother, Brandi. I am reminded that every day she deals with their needs. The normal everyday needs of 3, 5 and 7 year old kids plus the special needs and attention that must be given to children that are physically mature for their age but whose ability to process everyday situations are limited by the ability to communicate. It is a difficult thing to express, the exceptional needs of these kids that go beyond the needs of most children.

Most of all it is the patience needed to deal with the behaviors that may not be considered acceptable by some but uncontrollable by the child and the parent. Patience that must be practiced day in and day out not just on the weekend.

Brandi does this and it is evident. These kids with all their problems, behavioral abnormalities and communication skills love their Mommy very much. They run to her when she returns to pick them up. They hug, kiss and squeeze her with such affection it makes you smile and cry all in one moment.

Without doubt, I know that Brandi must sometimes feel unbearable weight from the challenges of raising her kids. But she wears it well and I am so thankful that she is the mother of these children. She gives up so much to be there for them and to give them the nurturing they need.

I have the greatest respect for all Mamas, but mothers raising children with special needs, be they physical, developmental or intellectual disabilities, are special people and Brandi is my special person.

Thanks to you Brandi, you will always have our support and admiration.

Tuesday, June 7, 2011

It has been a few weeks since my last entry to this ongoing story of Cole and his progress with Fragile X. Cole's communication skills continue to grow. He is using more and more sentences. I won't try to list them all but some are worth mentioning.

His most used phrase this weekend was, "Jim, come here". He goes between calling me Pappy and using Jim. But I guess the one that somewhat amazed me was when my Mom called. Cole had woke from his nap and crawled in my lap with his pillow and nodded off again. The phone rang and it woke him a little. It was Mama. Cole heard me talking and wanted the phone. I told Mama Cole wanted to speak to her. I handed it to him, not telling him who it was. I could hear Mama say, Hi, Cole. Then Cole replied," Hey, Gramma. What are you doing." That was about all as he slip back into his coma sleep.But he recognized Mama's voice who he had not seen in a month and over the phone no less, then used her name and ask a question. This is a big leap.

If you have read past posts you know that he loves Thomas the Tank Engine and all the accompanying characters. Well Cole is slowly mastering the colors of each engine. I know that it is not that he recognizes the colors but he is memorizing what color goes with what engine.

He spent 30 minutes with Marcia where she would ask him what color each engine was and he would answer. Sometimes correctly, sometimes not. Then he brought his book and sat in my lap. He began to ask me, "what color Thomas?" I would answer appropriately, blue. He went through the entire cast. Percy, Gordon, Emily, Henry, James, Edward, Toby and on. I would answer the color and he would repeat it. Then he began again.
What color is Thomas? I answer I don't know. He replied Thomas is Blue and we went through the entire cast again doing this. He got all but one or two right. He was proud of himself. He gave me that little look what I can do pose.

He is putting his clothes on without help. Gets them inside out and backwards but gets them on along with his shoes. His shoes which he sheds almost as soon as he puts them on.

We filled the blowup pool and in they went. He dives in and holds his breath(and I hold mine till he comes up)and tries to paddle around and then climbs out and dives in again. He loves the water. He also loves to splash anyone who get close enough.

I am changing speeds here for a while. Below you will find a link to "team up for a cure". This link will tell you about a golf outing Cole's dad, Chris and Chris's friend, Charlie Cosey, are organizing. Charlie's son is 2 and has been diagnosed with Fragile X. These two Dads are trying to make a difference in the lives of their sons.
The golf tournament will benefit FRAXA.

FRAXA is an organization that sponsors research for cures and treatments of Fragile X. You will not see TV adds or Internet adds seeking donations for FRAXA. Most all of FRAXA's funding comes from the efforts of family and friends of Fragile X children. Flea Markets, yard sales, bake sales, basketball tournaments and golf outings are organized by parents, Aunts, Uncles and Grandparents. As far as I know there has never been an event in South Georgia to benefit FRAXA directly. So we are hoping for a lot of support from our communities.

This is the link to the golf outing. You can copy and paste into your browser.

Please take a look at the link and if you can get a group of golfers or wannabe golfers together to play please do. If you can only volunteer to help please do that.
You can make a donation directly from the site. No amount is to small.

FRAXA is on the verge of breakthroughs in treatments and possible cures. Please vist their website,

Fragile X affects 1 in every 4000 boys born in the US and is a leading cause of autism. Believe me when I say it can affect you and your family. Thanks for any consideration you can give to this golf event and to FRAXA.

Saturday, May 14, 2011

For the parents who had to wait longer to hear a first word, who spent more time in doctors offices with their child than on play dates, who endure countless bad days and the stares from other people...For the parents whose child's first friend was their doctor...For the parents who face special needs everyday...WE SALUTE YOU ALL. Re post if you are proud to be or know a family with a child with special needs."

This was posted on facebook by my brother in honor of his nephews Cole and Cale.
My brother, Kenny, has his on personal history with matters of the brain and its limitations and frustrations. I watch him struggle after his motorcycle crash. He struggled to regain his mobility and even more so his command of the vast knowledge
his mind possesses. This is not my usual sarcastic humor the he and I banter back and forth. He has made a miraculous recovery.

When I first saw him in the emergency room ICU, I could not see how he would live much less recover to be just as obnoxious, innocuous and hardheaded as he ever was.
In short the brother that I love and care for.

Thank you little brother for being you.

It is an off week for Cole and Cale. They are with their Mommy and hopefully their Daddy. It is a quiet Saturday morning here on the end of Plantation Drive. Almost to quiet. But it gives me time to remember last weekend and the moments that make being a grandparent great.

One of those things is that you can share Cole and Cale's unbridled joy and love with their other Grandparents. Barbara and Kirk came to pick the children up Saturday afternoon from our house. About 30 or 40 minutes before they arrived Cole and Cale were in the swings. Marcia came out to tell them Nana and Papaw were coming. Their faces lit up and the clapped with such spontaneity, joy and enthusiasm as the scream out, Nana, Papaw over and over.

Then Cole, expecting them to drive up at any minute, said "open the gate, Pappy, open gate. I told him we would have to wait for a few minutes. He and Cale kept their eyes glued to the back yard gate for the next 10 or 15 minutes as they continued to swing. Every time a car would pass on the street they both would rise up in the swing seat only to sink back as it passed without stopping. Then with much effort we diverted their attention and they began to play in their cars and on the trikes.

Barbara called as they were getting closer, but we did not say anything to Cale and Cole. When they pulled their car into the drive and the gate opened it was shouts of Nana, Papaw. Both Cole and Cale jumping, clapping and then running to their Nana and Papaw.

Now I have to admit I had a tinge of jealousy and a slight feeling of rejection. It was short lived because the joy and enthusiasm of those two little boys is infectious. That along with knowing why they are so glad to see Barbara and Kirk.

It is more than comforting knowing the circle of love and caring that exists for these little boys. A circle that we now know extends to their big boisterous, gregarious and amazing Uncle Kenny.

All that said, Cole and Cale's language skills are getting better every time we see them. Cole told Marcia he wanted "sausage and eggs" for breakfast last Saturday, Cale added "me too". That was a new one for him.

Cale has mastered all the cut out puzzles we have, so we will have to find some new ones. Cole has worn the pages out of his "Thomas" books. So the same is true for those. Cole has become less interested in the "DVDs" of Thomas. He still puts one in the player and turns every thing on but does not tune every thing else out. He plays with toys more and with Cale. However he stops most times when the the musical sessions come on. He claps and dances to the music with a pretty good sense of rythym.

I will leave it there, but below you will find links to Fragile X Syndrome information. If you would like to know the causes, symptoms, treatments, research and statistics please visit these sights. A cure for Fragile X would be the greatest thing for these children which may be achievable, but a future where people are educated about their condition, understanding and supportive is acheivable. Please help.

Monday, May 2, 2011

Recently in the Valdosta Daily Times Rant and Rave section a reader posted a rant concerning a child that was screaming in a store and the mother was ignoring the child's behavior. The ranter seemed to be taking both displeasure at the behavior of the child and the behavior of the mother. The ranter went on to give advice on the discipline need by the child. Offering that such a poorly behaving child should not be out in public. In a subsequent rant posted by another reader it was suggested that the child should be put on a leash.

A year ago I probably would have agreed with both ranters. "Children should be seen and not heard". There are children with behavioral problems that can be addressed with the usual disciplinary actions. There are children with developmental disorders that have behaviors that cannot be addressed with the same methods. I have learned not to be so quick to judge.

If your children are grown or if you never had children at all it is easy to draw quick conclusions as to "what I would do if that child was mine". Think of it in this light. That child needs support from the grown ups around it. If we all grow old we too will seek support from the "grown ups" around us. Remember the old addage, what goes around, comes around.

That said,

Where do I start? I want to keep this interesting to everyone that takes the time to read my ramblings about my two little buddies and their big sister, AKA "the pill".
Erin, Cole and Cale were overnight guests Friday. As usual they push Marcia and I to our physical limits.

Having all three, Erin, Cole-Man, Cale, changes the dynamic. When Erin is here by herself she is completely independent of Marcia and I. She wants to do everything for herself. Throw the two boys into the mix and she has to be in the middle of everything. Telling the boys what and what not to do, telling Marcia what they want and don't want. She trys to mother the boys and protect her status as NO. 1 at the same time. It is sometimes humorous and sometimes frustrating. I truly feel for her Mom, Brandi. Forty eight hours of Erin's struggle to be both protaganist and antagonist wears me out. But still as soon as she and the boys leave I miss them all.

That aside, Cole played hard from the time Brandi and Chris dropped them off till he went to bed. Driving his push car, trying to ride the trike and swinging in his swing. They all went upstairs around 8:30 and had their bath and dressed for bed. Marcia sleeps upstairs with them when they are here and I sleep downstairs.

About 2:15 AM, I hear this little voice. "Pappy, Pappy, where's Pappy". It is Cole-man. Marcia puts him in the bed with me and goes back up stairs. Cole talks and jumps and gets out of the bed. Turns on the TV. Then he wants to watch "Thomas".

"Thomas is on the DVD in the den. So I grab a blanket go to the Den, get in the recliner. Cole turns on the TV puts "workshop" in the DVD and climbs in my lap.
Then he says,"need pillow, need pillow Pappy". I tell him "well go get a pillow".
He climbs down, goes to the Bedroom and returns with two pillows. Gives me one and crawls in Marcia's chair with the other. I am thinking good he will go to sleep and then I can put him in the bed. Right!

Once he is in Marcia's chair, he calls out,"Pappy, covers, covers Pappy. I get up and give him a comforter from the couch. Again thinking in a matter of minutes he will be asleep. Wrong!

He climbs out and retrieves his "Thomas" book. Climbs back in my lap. "Read Pappy, read. He points to the first page and smiles as he say "click clack, click clack" the words on the first page. He turns a few pages and points, "Hiro stuck in mud" then turns the page and says, "uh-oh Spencer" then turns a page or two. "Hooray for Hiro" he says as he points to the page. We repeat this for a few more minutes, then he changes the DVD again. "watch splish splash" then watch "Thomas bration"(celebration). This goes on until about 5:15 before he finally goes to sleep in my lap and I carry him back to bed where we both sleep until we are rudely awaken by his "Granny" at 7:00 AM.

Needless to say I was not a bundle of energy for the rest of the morning.

Back to the book and the pages that Cole recognizes. Don't know what it is he recognizes that allows him to repeat the words printed on those pages but he does put the right pages together with the words. Not only that he uses the right inflections on the words in the context of the story. He raises his eyebrows and draws his mouth into a circle and takes a deep breath as he say "uh-oh" then claps and bounces as he says "hooray for Hiro".

Doesn't sound like much for a five year old, but it is light years from where he was a year ago.

Then there is the other side. He don't like bandaids. Marcia put a little ointment on an insect bite that was red. Then she put tried to put a bandaid over it. We got the bandaid on, but he wanted it off. "Take it off, take it off". Then we struggled to get it off. Then he wanted the one Marica had put on Cale off also. He tried to take it off Cale's leg.

"Band aid off, Cale. Bandaid off Cale. Cale don't want it". As soon as we took Cale's off Cole calmed down and everything was fine.

Cale is making progress as well. He is talking more and asking for the things he wants and wants to do with short phrases. He still is hard to understand at times but he is definitely putting words together. Cale is not as attracted to the DVDs as Cole. He plays with toys and puzzles more. He loves to climb. He is constantly on the kitchen table or our bed. And he loves to emulate everything Cole does. If Cole swings, Cales swings. If Cole gets in the "car", Cale gets in his car.

I try to get each of them to count when they are here. In the swing I get them to count 1,2,3 before I push swing. Cale is counting up to 6 on his on in the swing but as he went up the stairs on his way to bed he counted the stairs 1,2,3,4,5,6,7,8.

They are learning and every little bit is a blessing.

I will go now, but I will ask that you consider supporting a children's charity.
There are many and I hope that you will visit FRAXA support research into causes and treatments for FRAGILE X. FRAGILE X is the genetic disorder that affects our Cole-man. Below is a link to an article on drugs being tried to correct Fragile X syndrome. Again Thanks.,0,7738702.story

PS: Congratulations to my friend Austin Lodge and his bride Keri.

Thursday, April 7, 2011

Cole and Cale were our guests Friday night, giving us need for some of those energy boosting drinks. They are so energetic, but I guess all 3 and 5 year olds are. From the moment Brandi opens the van doors it is a chorus of "Granny, Pappy, Granny, Pappy and then directly to the swings.

They both buckle them selves and then applaud their accomplishment. Then it is " Pappy,swing me high" from Cole. Cale waits patiently for his turn, not. He is bouncing up and down,"swing, swing". Cole is not satisfied with his altitude until he is able to kick the blades on the porch ceiling fan. Cale is not as much a daredevil, he is satisfied at a lower height.

After a few minutes Cole calls out " I want down, down, Pappy" and like and echo Cale repeats,"want down Pappy". I as Cole what he wants to do. Car, drive car followed by the echo, Cale. Typical little brother wants to do everything big brother does.

The load up in the little "Fred Flintstone" cars. Cole will get them lined up and says 1,2,3,go. Down the driveway they go, their little legs taking short steps to propel the cars. Then at the gate Cole will climb out and begin to push the car back to the porch. Guess what the "Shadow" does. Cole jumps on his trike and guess what the "shadow" does. The poor little "Shadow" forgoes a tremendous amount of supervision as Cole mimics his absent sister, Erin. They both are well supervised when Erin is around. It is amazing though how much of Erin mannerisms and posture Cole exhibits when she is not here to be "in charge".

Last week I wrote of the increase in Cole's vocabulary and how it continues to grow. Although it has only been a week since he was last here his use of words in phrases and short 3 and 4 word sentences has grown miraculously. He ask me to "kiss his hurt" and "Pappy, I want some ketchup" followed by the same for "ranch".

These boys love ranch dressing. They eat it on every thing from green beans to pizza.

Cale's vocabulary and speech is increasing as well. He speaks so softly you have to really listen to understand what he is saying. He brought me my glasses and handed them to me saying, "Pappy glasses". Then "get in Pappy's lap".

I am trying to catalog the new words and phrases for both of them to get a real sense of the changes.

It is not only their ability to communicate verbally that is growing but their problem solving abilities. Cole is doing better with the cut out puzzles and Cale does real well with the puzzles.

I put one of each color building block on the floor, red, green, blue, purple and yellow then ask Cole to bring me another block. I made him put the block with the same color block and by the third set he was matching the colors on his own. But then Cale want to show off his throwing arm and style, so I gave up for the time being on a repeat.

Then after breaking up throwing practice Cale grab my arm,"lay down, lay down". I said I will if you get me a pillow. He said "pillow" or something close, then ran to our bedroom and returned with a pillow and pulled me to the flow. Once on the floor I became the trampoline again. They both jump on and over me until I mention sponge bob cookies.

I got the cookies, took the clothespin off the bag and let them help themselves. Cole took the bag and they ate out of it. Cole loves to control the number of cookies Cale gets it seems. But then something happened. I had been showing Cole how to put the clothespin back on the bag the last time they were here. Well he grabs me by the hand with the bag of cookies in the other. Pulls me to the pantry, opens the door and pointed up and said something I did not understand although he said perfectly clear.
He pointed and said "clamp". I thought he saw something in the pantry he wanted to eat. He points again and says,"clamp, Pappy, close it". He was asking for the clothespin but calling it a clamp, which a clothespin is. I took the clothes pin and ask him, this. He responded "yep" "clamp, pinch it". I gave it to him and he proceeded to put it on the cookie bag and with a little help which he ask for, "help, me, help me", we got it on the bag. He then told me "put it up" and I did.

We have no idea where he got the word clamp from much less how he correlated it with a clothespin. But he did.

He is forever toting his Thomas book and asking Marcia or me to "read it". While I lay on the floor with Cale and Marcia was in the kitchen, I heard Cole behind me. I rolled over to see him in Marcia's chair where she reads to him. He was sitting there with his book open, turning the pages and naming the characters from each page. Something we had never seen him do. Then he say "one, two cats". There is one page with two cats in the illustration. He went from front to back pronounced "the end" and then started again.

Within a matter of minutes he had exhibited behavior we had never seen before used words he had never used before. For those of you with FX children you have to know the elation and emotion that runs through you when things like this occur. To anyone reading this without FX children, I hope you will try. Even though Cole is 5,it is the same feeling as a 1 year old beginning to walk and the first time they say Mama or Daddy.

Well, I have rambled on here enough. This Autism Awareness Month. Autism, much less Fragile X, was not anything I gave any thought to a few years ago. Now I do, I hope that my ramblings will have some positive effect on the way children and adults with development disorders are viewed by those not immediately touch by their lives. I hope that people will remember they are not only someones' son, daughter, brother or sister, they are somebody, period.


Tuesday, March 29, 2011

This blog has been about my grandson Cole, but I now must also give his little brother Cale more attention. Cale is 3 1/2 and is just as full of life as Cole but he also has learning disabilities. He only say a few words and only a few phrases and you have to listen to here those. On the upside he learns tasks pretty rapidly, understands things you say and ask him to do. He is such a cute little boy with a smile that will melt you.

He has a temper and will throw a little tantrum now and then. But he always looks to see if you are reacting the way he wants and is pretty soon smiling again.

Cale and Cole play well together and Cale wants to do everything Cole does. If Cole wnats to swing, Cale wants to swing. If Cole ask to get down, Cale immediately let's you know he wants down as well. They ride in their little cars and on their trikes.
They sometimes have little tiffs but mostly share their toys.

Cale is not as drawn to the Television and DVDs as Cole. Cale would rather play with the vacuum or climb up on the tables. He is in constant motion. Cale shows more ability to figure out the puzzles and recognize colors than Cole. Their abilities are different and we can only hope that Cale will continue to make progress to catchup.

I have been keeping up with Cole's vocabulary and his use of phrases. They are really increasing. He is up over 200 words he uses and more than 30 phrases. Cole will repeat almost any word you say, he just does not use the words other wise. He can also use a word one way but not another. Most notably his name. He will use the phrase "Cole's turn" when playing. You can ask him if his name is John Baker, he says no. You can ask him "what's your name" and barely stammers something out. Cole being unrecognizable and Bake barely so. An effect of the brain connections again.

He has a new Noah's Ark book. Cole loves books, both to read from and to attempt to eat. He will sit in my lap, holding the book and turn the pages. I point out the elephant and he would repeat elephant, then giraffes, then lion and so on. I could then ask him to find the elephant or lion or giraffe and he would turn the pages until he found the animal I ask him to find. All the time saying "find it, find it". But he does not say the animal's name without prompting.

I assume this is due to the connections in his brain being incomplete and not be able to relay the words back to be spoken. I am still learning about FX.

Cole can count to ten with the exception of 4. I watched him through the kitchen window as he push Cale in the swing. He would say "count Cale". Then he would count to Cale. One, two, three, five, six, seven, eight, nine, ten. Then clap and holler "yeah!!!"

We are working on Cale, he is up to four and then he begins to laugh.

Cale is pretty much the same way. He will repeat words though not as many. Cole gives commands such as "Pappy, come here", Granny sit here", "Turn off the light". Cale does not yet. When playing with the cut out puzzles, I will give Cale a puzzle peice, say an fire truck. I will say fire truck and he repeats that although it is not that well pronounce. But then he will ask, "where does it go?" I always answer "I don't know". He then puts it in place and says, "goes here". Of the several puzzles he has he learned to put the pieces in place with just one or two tries. That is very encouraging.

They come to stay with us every couple of weeks and most every time Marcia and I can recognize things, some small and some significant, they both did not do on their last visit. One thing they both do on every visit is make their Granny and Pappy very happy. They run to hug our necks, give us kisses, sit in our laps and make us laugh.
While I wonder what life will be like for them in years to come, years that I may or may not share with them, I am comforted by their overall good nature and desire to learn.

I mostly pray that the world will learn to accept them as they are and perceptions will change for children and adults with intellectual challenges. It is easy to put children with special needs in a good place in your heart, I just hope that they will not outgrow that place as they become adults with special needs. After all we are all God's children, I have to believe they have a special place in his heart.

Please support a children's charity.

Monday, March 7, 2011

Had a great weekend with Cole, Cale and Erin. They are a handful for Marcia and me, but is a labor of love. Most grandparents have used the old cliche, "glad to see them come and glad to see them go". I guess I am the same until I realize how quiet the house becomes and how much I miss their laughter, little hands tugging me to the backdoor to go "outside".

My carrying on here has been about Cole and FX with little mention of Erin and Cale, Chris and Brandi's other two children. I by know means mean to leave them out nor my oldest grandson Andrew. Like any granddad I love them all and they are each unique. But Cole is a "special" child and requires special attention.

I could list all the little things Cole did and said that he did not even a week ago. There are many, his motor skills are improving, his speech is improving, his vocabulary and command of it is expanding exponentially. But today I am filling a little melancholy and philosophical.

All parents of more than one child at some point realizes, willing or not, one of their children requires more attention, needs more support and sometimes pulls a little harder on your heart. Grandchildren are no different. Love is not a measurable commodity and should not be, it is a gift to be given with no expectation of return. There are no scales to balance love given and received only the heart can do that. A child's love is special. It fills your heart to overflowing forcing you to share it with everyone who will accept it.

Cole pulls at my heart. He does so to everyone who comes to know him whether you know of his FX or not. He is just a loving child. He gives us his love with no expectation of return. His innocents allows him give his love for no purpose other than to giving it to you. Not offer it, not trade it, not to manipulate you. When Cole hugs your neck or gives you a kisses he expects nothing, not even love in return. We should all be that way.

I cannot leave without a request for everyone to support a children's charity. I hope that it will be for FX research, but there are many that need our help. With that I want to thank our good friends Larry and Sharon, whose cabin we lived in for three months after our fire. Larry refused rent instead ask it go to a donation to FX for Cole. Something he would never tell and generally I wouldn't either. But today my heart is overflowing and like Cole we should all be that way.

Sunday, February 27, 2011

Well it is the morning after. Cole and Cale came for the day yesterday and they were two balls of energy.

Marcia made breakfast for them and the scoffed it down and then wanted to take a bath of all things. So they splished and splashed in the tub for about thirty minutes. Both attempting to dog paddle in the 3 inch deep water. Cole loves to put his head underwater. Which is a bit scary but he always pops up after 10 or 15 seconds. Of course Marcia and I both got a good shower in the process.

Let the water out and got them both out. While in the process of drying Cole off I looked around to find Cale had climbed back and was turning on the water. That one loves to climb everything.

We moved outside as it was becoming a beautiful Saturday morning. Cole got into his little push car and made a few trips up and down the drive before he remembered the swings. I had hung two swings on the carport and had took the swings down after the fire but had bundled the chains around the hooks to get them out of the way.

Cole pulled his car up under the chains and pointed upward. "Swing, Pappy, swing. So our morning activity was set. I gathered up the swings and re-hung them. Cole jumped in and buckled himself in like it was just yesterday he had his last swinging session. Cale did as well. Both yelled "yeah...." as the pushed the locks in on the straps, clapping and bouncing up and down.

Cole told me to "push, Pappy" I did and then he said, "higher pappy". At that point he told me, "down, Pappy, I want down." I was a little perplexed that he was tired of swinging so quickly. I took him out and he went over to Cale's swing. "Cale out, Cale out". Cale just like me not knowing what was going on but wanting to do what ever his big brother was going to do said "yep, I 'ont down".

Well as soon as Cale was out of the swing Cole jumped in and began to lock himself in. Then I knew. Cole loves to kick at the ceiling fan on the carport and he couldn't do it from the other swing. So after the exchange of swings we spent the next hour swinging and aggravating Granny(Marcia) everytime he would go high enough to hit the fan blade with his foot. But even she fell victim to his infectious laugh every time would do it.

Cale on he other hand was content to just go back and forth and sing his little songs in that "alien" language.

We made it to lunch and then went on a ride to T'ville. They both laughed and carried on. Cale sang "paddycake" and Cole talked about his favorite thing, "Thomas and Friends". Back home about an hour later and back into the swings for another hour or so. Both are learning to propel themselves but I think they are holding back because they had rather their "Pappy" push them.

Once back inside for hopefully a nap Cale brought a pillow to the center of the den floor and signaled for me to once again become the human trampoline. For the next 30 minutes the jump, roll over and ride on me as I lie on the floor. Cole calls out between each attack on my anatomy, "Cale's turn, me turn". Amazingly they wait for the other to make their dive bomb attack before making their own run.

Cole and Cale show now jealousy. After the session on the floor I climbed bruised and battered into my recliner. Cole soon climbs in too with his Thomas book. "Read Thomas, Pappy". Then he calls, "Cale, Pappy lap" and Cale climbs in as well. Cole turns the pages and we read. Cale loses interest and climbs down to play with his blocks. Cole continues to turn the pages and point out and name all the characters and animals.

They are both making progress with their speech and communications. Cale talks constantly and he is more understandble. Cole is using more and more short sentences to ask for things and to tell you what he wants. Cole is a long ways from where he was just a year ago. Cale is catching up in a hurry as well.

Oh, we got a small tv with a built in DVD player. Cole was rough on the little DVD players. Taking the DVDs in and out all the time he would break the tray. We thought that the hidden slot for the DVDs would be just the cure for this. Well, I made the mistake of putting the DVD in the slot with him sitting in front of the TV.
Low and behold I come back in the den and he has the the DVD out trying to put another one in the slot. So what the heck, I showed him how to do it, he had alread figured out which button to push so the cat was out of the bag anyway.

It was a great day with our two grandsons and could have only been better if Andrew was there as well.

On another note, I just discovered this week that I can see how many times this blog is veiwed. Over a 1000 veiws, thank each of you for your interest in Cole and in Fragile X. I hope that my little reports will remain interesting as I try to tell about Cole's progress and how he much he adds to our lives.

Fragile X is a genetic disorder that can become a part of your life. Like so many other things that affect our health and the health of our loved ones there is seldom a warning. It is here and we must deal with it. Some will have a bigger burden than others but each will find the need to make sacrifices to provide the support their child or grandchild will need. No matter what the malady may be, they all need support from those who have not been touched, yet. It is easy to gravitate toward support of deseases and disorders that affect children and especially those that are crippling or terminal.

Fragile X Syndrome is not necessarily crippling nor is it terminal in the normal terms. Fragile X can be seriously dibilitating and it is terminal in the fact that the child will become an adult and will have the disorder till death. The fact is this disorder will allow that the child will outlive his parents but still be in need of support, not only finacial but physical and emotional support. This is another plea to those touched, untouched or removed from Fragile X syndrome to consider supporting National Fragile X Foundation which offers support to families, FRAX which funds research into treatments and cures or Easter Seals which offers therapies and services. These are their websites.

Thanks Again.

Saturday, February 19, 2011

Hi! Been a few weeks since I have posted anything about Cole. We have finally began to live in our home again. Erin spent the night with us Thursday and Friday nights and Cole and Cale came over Saturday morning. They stayed until we took them home for Cole's birthday party.

His Nana and Papaw, Aunt Dana, Mema and Grandaddy Thomas were there as well as Brandi and Chris and their friends the Skinners.

The Skinners have two small children, Alyssa and Caleb. When they arrive Cole began to holler Caleb, Caleb. Caleb must be around 2. Alyssa 3 or 4. They all played well together on the swings. Cole fell out of the swing a couple of times, but jumped right up. Cale ran into the swing a couple of times.

Cole and Cale both seem to interact well with other children. They were both tired from playing hard all morning and no nap. I wondered how well they would do. They were pretty good. After the cake cutting and eating the kids began to play again.

Cole brought me two balloon that were tied together. He said "apart, Pappy, apart". It took me a second to realize what he was saying, then he separated them at the knot and handed them to me. Upon untying them I gave back to him. He immediately turned and gave one to Alyssa. Saying, " here lyssa, here". He really amazes me sometimes with his willingness to share things when he has more than one. With only one though he does become a little selfish.

After opening his presents, he showed his Nana, Papaw and me his new "Thomas DVDs" and the for Thomas books. Then he gave each of us a book. Sharing again.

He then sat for several minutes and identified all the trains in the books for Nana and me. Then he read for me, in jibberish, each page in the little books before pronouncing the end.

Cole's vocabulary continues to grow. He still does not readily name colors and has to be prompted to do any counting. But he recognizes more animals by name and sound. He uses more and more words in sentences.

I got tickled at him when he was showing me his DVDs and books. Their was one box with DVDs and 4 little books about 3x5. He did something just like I would do. He could not hold all of them at one time and show them to me. So he put the DVD box between his knees then attempted to hold up the 4 books. The DVDs fell to the ground from between his knees each of the 3 times he tried it. Then he picked up the DVD box and slammed on the coffee table and proceded to show me the books. Just seemed like something my impatience would have me do.

Backing up to the morning. When Cale and Cole arrived Cole's first request was for "COKE". Followed immediately by Cale saying "COKE". So I guess I have addicted both of them for life to Co-Cola for breakfast. I know that Brandi could shoot me.

Cole did get upset when I tried to get him to use his fork at breakfast. He told me "I don't want it". Then handed it to me. I put back on the table and he immediately handed back saying " I don't want it". Didn't force the issue. He was doing so well with everything else. He can display a little temper at times and I could see it coming.

Then I heard the backdoor open and then Cole gave out a holler, GamMa(not sure about the spelling). It was my Mom. Cole has not mastered Grandma yet, but Mama melts at the sound of Cole saying GamMa. Both he and Cale ran to her and gave her hugs and kisses. These are such loving children. Erin held back because she is so grown up at almost 7, but she finally gave hugs and kisses.

We went back outside and I got Cole to pedal the "big wheel" a little, but he still ends up pushing it along with his feet on the ground. I do think he was getting the idea of how it works though. Cale is so short he can't touch the pedals yet.

Then the sweetest momemt of the morning came. Marcia was sitting on the edge of the cedar chest, which is the only peice of furniture not to make it off the carport and into the house. It contains all the things that belong and remind us of our son Jay.
It is to heavy for us to move without unpacking. I don't think either Marcia or I want to go down that emotional road just yet. But to the moment.

As Marcia was sitting on the cedar chest Cole climbed on to it and then stood behind Marica and hugged her kneck from behind. The he said, "Granny, scatch your back". Marcia said " Please do". Cole sat with his legs stradle the chest and scratch Marcia's back for a minute or so. Then he said, "feel good, Granny" and hugged her again.

Moments like these might be taken for granted in a five year old if not for Cole's FX. The FX chromosone limits production of a protien which allows connections between sections of the brain to grow. Literally parts of his brain cannot communicate to other parts. So every little word or act of cognition and recognition are little triumphs.

Cole's FX is mild and he continues to learn. He is a great little problem solver. He does not let anything slow him down for sure. We are so greatful for that.

I am the member of Fragile X group on Facebook. Very seldom do I post anything there, but I read the posts of other Fragile X moms and dads and I assume a few grandparents like myself. Sometimes it makes me sad as I read of the struggles of some families, but then some one posts a minor or major moment of progress and hope springs eternal again. I appreciate the honesty that all those in that group have in putting out their failings, successes, tragedies and triumphs.

For anyone reading this I hope you will at least remember these families and children in your prayers and if you can please support FRAXA at as they search for treatments and cures for Fragile X Syndrome.

Thanks again.

Thursday, January 27, 2011

Well unfortunately I do not have a lot to report about Cole. I have been so busy trying to finish up the house and it is so hard to have him over at the cabin to stay.

Marcia and I miss having him and Cale on the weekends so much. It looks like we will be able to move back in in a couple of weeks and then have them both spend the weekend.

Brandi, Cole's Mommy, told Marcia that Cole had gotten up in the middle of the night last week and fix himself some juice. He did a pretty good job all things consider. She woke up to catch him. He had gotten his cup out, his juice poured but the sippee cup didn't have the little valve.

I recently read a post going around on Facebook about walking away from the people that create the most "drama" in you life. I thought about it and realized that all the drama Cole creates just makes me want to love and hold him even more. I have found that the only cure for the saddness I sometimes feel is to hear Cole's say "Hey, Pappy". In fact Cole's smile is cures a lot of my ills.

We are fortunate and blessed that Cole functions so well. I read the posts from other parents and feel for their plight and struggles, knowing they could not love their child any less than I love Cole. I always go back to my Granny for strength. She lost five children before she passed away at 85. I was there for three of the five and she grieved but moved on. She told me she had learned not to ask "why me, but to ask why not me". Having survived 5 children two types of cancer and 3 heart attacks, I knew if she could overcome those battles and that loss I can also.

Cole and his FX "brothers and sisters" are alive and there is hope in life. I hope that everyone with and FX child can find that hope no matter how small a sliver it might be. There is strength in hope but it is also contagious. There is proof of that on of all places Facebook where a group of FX parents share their experiences, thoughts, triumphs and even despair. But most of all I see hope eminating from the conversations back and forth.

I am glad to report that FRAXA met the goal to recieve matching funds from the Doris Buffet Foundation. I hope that all that helped meet that goal will continue to support FRAXA. Also support Easter Seals and Special Olympics if you can.

That is all for me today. I hope to have some first hand stories about Cole and his progress next time.