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.