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!