Time Flies, My Fraggles are growing up.

It has been a few month since Cole had his first seizure and was hospitalized. I think the seizure had a greater effect on the rest of us more than Cole.  For me it was a reminder of just how fragile life is.  A lesson I thought I knew well. We all become comfortable in our circumstances. Forgetting that life does and can happen to us or to the ones we love.

In the meantime Cole has not missed a beat. Smiling and watching Belle and Thomas, shooting baskets and trying to knock down Marcia's hanging ferns.

 Cole receive the most improved award at school. His teachers have done an amazing job. He continues to add to his vocabulary, to count higher and higher.  Not enough words or time to thank them.

Cole's progress may be small when measured against other children but every little thing means so much to us and you can see his pride in himself when he does something new.

You never know what it is going to be.  The other evening he climbed into my lap, put his head on my shoulder and said, " tell a secret, Pappy". Then he leaned in close to my ear. In a voice so low I could not understand the words he told me his secret. A secret it will remain.

Cale started to school and went for two weeks before the year was out.  His Mamma says he liked it and ready to go everyday. Cale is definitely ahead of the curve as compared to Cole.  He is constantly asking questions and making pronouncements about what he wants to do and what he is doing.

Really not much to report other than they are both doing well.

The "Team up for a Cure" golf outing is planned for August 24th. Anyone wishing to participate as a contestant, volunteer or donor can do so by contacting  Chris Baker @ 770/286-8441 or Patty Cosey @ 229 292-4944 or pwcosey@bellsouth.net

I started this post several weeks ago.  So I can now report that Cale is in school and got sick his second day with a bug, doing better according to his Dad.  Cole is back and school and getting into the swing of things.

Haven't got a full report on Erin yet,  But I am sure she is doing things her way.

I will be back after the Team up for a Cure event on Friday, August 25th.  Thanks everyone.

Cole can do it!

I started this post last week. I was so proud of Cole for his persistence. I was so taken by his sense of pride in his accomplishment. I got sidetrack and did not get back to it.

Then we really got sidetrack onto the main line of the Fragile Xpress. Cole-Man suffered his first siezure and then had several episodes. We had hoped this would not come but it did.

And as bad as it is there always seems to be things in place. Brandi was at her Mima's with the kids when the seizure struck. His eyes glazed over and he became unresponsive. Fortunately Brandi could throw him in the van and leave Erin and Cale with Mima and her Aunt Carole. She called 911 and they met halfway to town and Cole-Man was transferred to the ambulance and to the emergency room.

There he was stabilized and prepared for transport to Macon. Then Macon call and they were full so the sent him to Scottish Rites in Atlanta. There waited an attending physician who was an expert in the field of Fragile. I can't remember how to spell his name but he made the first diagnosis of FX in the State of Michigan some 15 years ago we were told. It was our good fortune Macon turned us away.

Cole is off the ventilator and breathing on his own. His vital signs are good, his EEG was good. He is still groggy but is talking.

The last few days have brought many prayers and thoughts from friends and strangers from near and far. I truly believe that the silent prayers offered by others are the greatest of gifts. Thank you all. The unfinished post of last week follows.

"Cole wants to do it" he told me, so I gave him the remote to the DVD/TV. Cole has long been able to load the DVD and play his beloved Thomas episodes. But the remote has been off limits because he would randomly press the buttons causing the need for the "adult" in the room to correct the situation.

But Friday morning I just gave him the remote and the DVD he is enamored by. It has four stories and you can choose continuous play or select them individually. Hereto fore Cole would continously press the button that played the first selection. The DVD demanded that you move a yellow ball next to the story you wanted to play.

I left it with Cole and low and behold by eleven o'clock he had it figured out. He could move the selector through the menu of Continous Play, Select Story, Games and Language to the Select Story option. Then move the selection icon, a yellow dot, through the four story lines, games and return to menu options. He was selecting the story he wanted to watch. Then he would put the remote on the end table until time to select again.

Not only that he has learned to turn the volume up and down and truly realizes what it to loud. Pronouncing, "to loud Pappy, turn it down".

But it was the look he gave me with his head tilted up in a sense of pride as he said "Cole can do it" then gave me that big smile.

Oh how the little things done in little moments by little people can stir big emotions in "big people" Unfortunately you never see them coming and you forever wish you could have chronicled them in pictures for other to see.

Cole played in and out of the house all morning while Cale was Erin's Shadow. Erin retired upstairs to Marcia's study to watch TV and Cale followed. I could hear Erin reading to Cale from the Toy Story book so I peeked in. She had him on the floor in front of her and big bowl of "pilfered" jelly beans between them. Cale was enjoying the reading and the jelly beans. Needless to say he did not eat much of the spaghetti I made for lunch.

Cale like Cole has an infectious smile which he has learned to display at the most opportune moments. Let's just say that when Cale wants cookies Cale gets cookies. And afterall what are grandfathers for if not to get the cookies off the top shelf of the pantry.

Blessings

A good friend ask me how Chris, Brandi and the Kids were doing this week. He expressed how blessed he was that his family was healthy and doing well.

He said he knew that Chris and Brandi had a lot on them and I agreed. They do, raising three children with special needs. But I also had a moment. Erin, Cole and Cale are by and large healthy. They have the normal issues with runny noses and upset tummies but they are healthy. They run and play enjoying each other's company. Some of their skills are behind and may always be behind but they are physically healthy.

Their developmental disorder, Fragile X, is a condition not a a disease. I hope that I never look at them as not being healthy again. I hope that the world will one day not look at them as if they are unhealthy.

Cole and Cale have limitations but we all do. The greatest impairment to their chances of living a long and happy life are the attitudes of the people who surround them.

All of us "normal people" have had contact with people, children and adults, which have physical or mental limitations. I have and I recall that at times I was not as understanding or as sensitive as I should have been.

But as I remember those people did not chide me for the shortcomings of understanding and sensitivity I displayed.

My friend is truly blessed with a great family, but so are we.

Cole came to visit me at work Friday. He had been sick with a tummy ache Thursday morning and I kept him for a few hours while Brandi had Cale at the dentist. He was so pale and lethargic. He laid in my lap not even wanting to watch Thomas and Big Belle. He wafted in and out of sleep only looking up at me with weak gazes.

He finally ask for some "coke". After a couple of swallows he began to recover. He was asking to watch his DVD of Thomas and all was well. His Mommy came and he was so glad to see her. He looked at her and uttered a weak "hey Mommy" and then gave that sweet little smile that will melt any heart.

A smile that will chase the clouds away and bring out the sunshine. And just when you think he cannot be any sweeter he does it again. As he was leaving the shop with his Daddy, he rolled down the truck window and smiled as he said, "I love Pappy". Cured any melancholy I may have had.

You will notice the original art at the top of the page. These are just a few of the paintings of Cole and Cale. They are simple fingerpaintings but Cole and Cale enjoy doing them.

If you would like to support research for Fragile X treatment and hopefully a cure you can purchase one of Cole or Cale's artworks by sending a check for $5 or more made out to FRAXA and a self addressed envelope to:

ErinColeCale
405 Plantation Drive
Quitman, Ga 31643

Your artwork will sent to you and your donation will be forwarded to FRAXA. You can find more information on FRAXA at fraxa.org

Thanks

I walked up the stairs last night to peak into Marcia's upstairs lair before going to bed. When I open the door the first thing I saw was the light switch. The light switch was not so special just a white plastic plate. But it was surrounded by hundreds of dirty little smudges. Finger prints from the little hands of Cale and Cole.

Funny how sometime the smallest things bring back memories so quickly. The first thing to flash in my mind when I noticed the fingerprints was of the french doors in our home on Gordon Street. The kind with rows of glass panes. The bottom two rows were always covered in finger prints and smudges from Jay standing and pressing his lips against the glass and then giggling. Don't know what about doing that made him laugh so but it did. I remembered being unable to clean the glass when we moving. I am sure the new owners cleaned the glass but somehow I imagined or hoped those little fingerprints and smudges would remain forever on the glass.

Now I have fingerprints around the light switches up and down the stair and everywhere else. Some of Cole's first words were "on" and "off" as he would stand and click them up and down. We didn't know then that he was a Fragile X child. But we still excited that he was beginning to speak.

Needless to say all the fingerprints can't stay but some will certainly become just like the fingerprints on the glass panes, not memories but reminders to appreciate the time we have had with our children and grandchildren. Never to take for granted tomorrow will bring the opportunity to fulfill yesterday's dreams.

Seems life is continually re-arranging your dreams, opportunities and possibilities.

Enough Grandpa philosophy .

The "Kids" are progressing. They are all learning and growing. Erin has just completed playing in a basketball league, Cole will soon be completing his first year in school and Cale will soon begin.

Cale's vocabulary has really grown along with his stature. He is a solid little 4 year old almost a head shorter than Cole but only a couple of pounds lighter. Cale is no doubt the baby in the family he has learned every trick there is to get attention turned his way when he thinks it is lacking.

Ninety percent of the time he is sweeter than good cane syrup. But when he thinks he deserves more attention he can put on an academy award performance to express his displeasure with the situation. I have never seen a child that could cry in such agony with a smile on his face. It is almost sinister at times. He will run and cling to me hiding his face crying to beat the band all the while with a big smile because he is getting what he wants, attention. As if he never receives any at all.

He has learned to even manipulate his big sister, Erin. He has her at his beck and call at times. She is very protective of him and mothers him. Adding one more to the list of "child spoilers" on which I don't appear!

Of course anyone who sees him smile and make his little laugh can easily be added to the list. It takes great will power and fortitude to resist.

On a different note Chris and Brandi along with their Friends will begin organizing the "Team up for a Cure" golf outing in the next few weeks. It was a great success last September. I am sure that Charlie and Patty Cosey will be involved. I know they all want as many families of Fragile X and Autism Spectrum children as possible to be involved. But they also need participants in the golf outing as both players, volunteers and sponsors. So keep "Team up for a Cure" in mind and more information will be coming in the weeks ahead.

Thanks.

This is Cole

I wanted to post something about the kids this morning. But I cut my index finger and it is bleeding on the keypad.

Sometimes things just work out because below you will find my son Chris's facebook post about his children.



This is Cole. He has Fragile X Syndrome aka genetic mental retardation. He just turned 6 yesterday. I am proud of him and his eagerness to learn. His brother and sister also have the syndrome. As a normal kid, I made fun of kids like mine. That I regret. I wish I would have gotten to know them. My point is don't let your normal kids miss out on the happiness and joy kids like mine have to offer. They don't want your sympathy. They will only know they are different when we treat them different. They have the ability to love, laugh and be happy. I think every " normal" person is retarded in that area.

Silent Prayers

The silent prayers of others heard only by God are among the greatest of gifts. Over the last year I have written about our grandchildren who have Fragile X Syndrome.
I have no doubt that many of you that have visited this site offered those silent prayers for our grandchildren. In doing so you have done the same for the thousands of other children and adults with Fragile X and their families.

Well prayers are answered. Maybe not in the miraculous cure we all hope for but certainly in small and unforeseen ways. In that way I have come to realize there are angels among us. No wings nor wearing celestial robes, but everyday people doing extrordinary work.

Our grandson Cole who I have tried to introduce to you seems to be the most effected by FX. Cole who began kindergarten this year has made great progress in the eyes of Marcia and I. This progress is largely due to the the earthly angels who teach him every school day. It is obvious that Cole loves his Angels, he smiles and his eyes light up when you ask him about Ms. D, Ms. W and Ms. L.

The task of bring out the capabilities of a child with FX and other develpmental disorders absolutely takes dedication, caring and a lot of love. We are so thankful that our prayers, yours and mine, have given us these angels.

Cole's progress and achievements may seem small in comparison to other five year olds but it has been in leaps and bounds to us in the last 4 months. He recognizes his written name, his brothers, his sisters, Mommy and Daddy. He can name basics colors as they are presented to him. He communicates more and more in sentences instead on a couple of stacked words.

Erin seems to be coming out her shell also. She is playing basketball, well she is practicing basketball. We wondered if she would go back after being hit in the face with the ball in the first practice. But she did and she has made two more practices.
She received the most improved student award for the second grade.

Cole was give a "Karactor Kid" award because he expresses such caring to the Special Needs children in his class. He made his Granny and Mommy proud as he marched to his seat and accepted his award.

Cale is talking although his speech is still somethimes difficult to understand. He is asking questions and giving answers. He seems to be improving in his cogniative skills. He has such a smile and he loves to sing along with the DVDs of Barney and Thomas.

Cole and Cale both recieved small motorized tractors from Santa Claus. Cole mastered manuevering and steering his in short order. He turns in and out of obstacles steering like and old pro. Cale has only learned to turn right.

When Cole finds himself hemmed in he gets off and pulls it around and climbs back on.
He hasn't quiet got backing up down yet. Cale on the other hand jumps off and runs to get help. He getting better at steering. Cale had really just as soon ride as a passenger in Erin's two seater Jeep.

December was a good month and January has had a good beginning for the Baker Fraggles.

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!

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 http://fraxa.org/

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.

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.

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.

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.

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 chris@redoxchem.com.

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

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.

http://www.firstgiving.com/fundraiser/chrisbaker/teamupforacurecharitygolfouting?utm_medium=share&utm_campaign=share&utm_source=at-facebook&utm_content=eua#.TigsS4JYpM1.facebook

Here is a link to FRAXA.

fraxa.org

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

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 helpfragilexhelpcole@yahoo.com

Thanks

Jim

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.

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.

http://www.firstgiving.com/fundraiser/chrisbaker/teamupforacurecharitygolfouting?fb_ref=mainpage&fb_source=profile_oneline

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, fraxa.org.

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.

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.

http://www.fragilex.org/html/resources2.htm
http://www.ghr.nlm.nih.gov/condition/fragile-x-syndrome
http://www.conquerfragilex.org/about_resources.php

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.org. 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.

http://www.latimes.com/health/la-he-fragile-x-20110501,0,7738702.story

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

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.

Thanks.