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
Sunday, July 3, 2011
Monday, June 20, 2011


My grandsons, Cole and Cale, spent the night with us Sunday. They stayed with Marcia today while Brandi, their mother, took Erin, their sister, to the doctor.
I use this blog to talk mostly about Cole and his progress with Fragile X.
Little brother Cale has a diagnosis of Pervasive Developmental Disorder Not Otherwise Specified(PDD-NOS). This seems to mean he does not have Fragile X but has something we just don't quite no what yet.
Both boys are happy little guys for the most part. They run, play, ride trikes, love their swings. Cole loves Thomas the Tank engine and operating the DVD player.
Cale watches the DVDs intermittently, likes to dance to music and will throw little "fits" occasionally in an attempt to get attention and his way. He usually puts on a cry but is smiling all the time.
They spent time in the blow up pool while here today. Cale likes to get in the water but is a little timid about actually playing in the pool. He did do a little more splashing than in past visits.
Cole on the other hand is a fish. He bounces off the sides of the pool into the water and breast strokes under water to the other end. It is amazing. He holds his breath instinctively. When he pops his head up he blows out his breath and takes a deep one in before submerging again. He does something on every visit that amazes us in spite of his Fragile X.
Today's visit reminded me that they only come to visit every week or so and leave Marcia and I wore out, but they are cared for daily by their mother, Brandi. I am reminded that every day she deals with their needs. The normal everyday needs of 3, 5 and 7 year old kids plus the special needs and attention that must be given to children that are physically mature for their age but whose ability to process everyday situations are limited by the ability to communicate. It is a difficult thing to express, the exceptional needs of these kids that go beyond the needs of most children.
Most of all it is the patience needed to deal with the behaviors that may not be considered acceptable by some but uncontrollable by the child and the parent. Patience that must be practiced day in and day out not just on the weekend.
Brandi does this and it is evident. These kids with all their problems, behavioral abnormalities and communication skills love their Mommy very much. They run to her when she returns to pick them up. They hug, kiss and squeeze her with such affection it makes you smile and cry all in one moment.
Without doubt, I know that Brandi must sometimes feel unbearable weight from the challenges of raising her kids. But she wears it well and I am so thankful that she is the mother of these children. She gives up so much to be there for them and to give them the nurturing they need.
I have the greatest respect for all Mamas, but mothers raising children with special needs, be they physical, developmental or intellectual disabilities, are special people and Brandi is my special person.
Thanks to you Brandi, you will always have our support and admiration.
Tuesday, June 7, 2011
It has been a few weeks since my last entry to this ongoing story of Cole and his progress with Fragile X. Cole's communication skills continue to grow. He is using more and more sentences. I won't try to list them all but some are worth mentioning.
His most used phrase this weekend was, "Jim, come here". He goes between calling me Pappy and using Jim. But I guess the one that somewhat amazed me was when my Mom called. Cole had woke from his nap and crawled in my lap with his pillow and nodded off again. The phone rang and it woke him a little. It was Mama. Cole heard me talking and wanted the phone. I told Mama Cole wanted to speak to her. I handed it to him, not telling him who it was. I could hear Mama say, Hi, Cole. Then Cole replied," Hey, Gramma. What are you doing." That was about all as he slip back into his coma sleep.But he recognized Mama's voice who he had not seen in a month and over the phone no less, then used her name and ask a question. This is a big leap.
If you have read past posts you know that he loves Thomas the Tank Engine and all the accompanying characters. Well Cole is slowly mastering the colors of each engine. I know that it is not that he recognizes the colors but he is memorizing what color goes with what engine.
He spent 30 minutes with Marcia where she would ask him what color each engine was and he would answer. Sometimes correctly, sometimes not. Then he brought his book and sat in my lap. He began to ask me, "what color Thomas?" I would answer appropriately, blue. He went through the entire cast. Percy, Gordon, Emily, Henry, James, Edward, Toby and on. I would answer the color and he would repeat it. Then he began again.
What color is Thomas? I answer I don't know. He replied Thomas is Blue and we went through the entire cast again doing this. He got all but one or two right. He was proud of himself. He gave me that little look what I can do pose.
He is putting his clothes on without help. Gets them inside out and backwards but gets them on along with his shoes. His shoes which he sheds almost as soon as he puts them on.
We filled the blowup pool and in they went. He dives in and holds his breath(and I hold mine till he comes up)and tries to paddle around and then climbs out and dives in again. He loves the water. He also loves to splash anyone who get close enough.
I am changing speeds here for a while. Below you will find a link to "team up for a cure". This link will tell you about a golf outing Cole's dad, Chris and Chris's friend, Charlie Cosey, are organizing. Charlie's son is 2 and has been diagnosed with Fragile X. These two Dads are trying to make a difference in the lives of their sons.
The golf tournament will benefit FRAXA.
FRAXA is an organization that sponsors research for cures and treatments of Fragile X. You will not see TV adds or Internet adds seeking donations for FRAXA. Most all of FRAXA's funding comes from the efforts of family and friends of Fragile X children. Flea Markets, yard sales, bake sales, basketball tournaments and golf outings are organized by parents, Aunts, Uncles and Grandparents. As far as I know there has never been an event in South Georgia to benefit FRAXA directly. So we are hoping for a lot of support from our communities.
This is the link to the golf outing. You can copy and paste into your browser.
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.
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.
Saturday, May 14, 2011
For the parents who had to wait longer to hear a first word, who spent more time in doctors offices with their child than on play dates, who endure countless bad days and the stares from other people...For the parents whose child's first friend was their doctor...For the parents who face special needs everyday...WE SALUTE YOU ALL. Re post if you are proud to be or know a family with a child with special needs."
This was posted on facebook by my brother in honor of his nephews Cole and Cale.
My brother, Kenny, has his on personal history with matters of the brain and its limitations and frustrations. I watch him struggle after his motorcycle crash. He struggled to regain his mobility and even more so his command of the vast knowledge
his mind possesses. This is not my usual sarcastic humor the he and I banter back and forth. He has made a miraculous recovery.
When I first saw him in the emergency room ICU, I could not see how he would live much less recover to be just as obnoxious, innocuous and hardheaded as he ever was.
In short the brother that I love and care for.
Thank you little brother for being you.
It is an off week for Cole and Cale. They are with their Mommy and hopefully their Daddy. It is a quiet Saturday morning here on the end of Plantation Drive. Almost to quiet. But it gives me time to remember last weekend and the moments that make being a grandparent great.
One of those things is that you can share Cole and Cale's unbridled joy and love with their other Grandparents. Barbara and Kirk came to pick the children up Saturday afternoon from our house. About 30 or 40 minutes before they arrived Cole and Cale were in the swings. Marcia came out to tell them Nana and Papaw were coming. Their faces lit up and the clapped with such spontaneity, joy and enthusiasm as the scream out, Nana, Papaw over and over.
Then Cole, expecting them to drive up at any minute, said "open the gate, Pappy, open gate. I told him we would have to wait for a few minutes. He and Cale kept their eyes glued to the back yard gate for the next 10 or 15 minutes as they continued to swing. Every time a car would pass on the street they both would rise up in the swing seat only to sink back as it passed without stopping. Then with much effort we diverted their attention and they began to play in their cars and on the trikes.
Barbara called as they were getting closer, but we did not say anything to Cale and Cole. When they pulled their car into the drive and the gate opened it was shouts of Nana, Papaw. Both Cole and Cale jumping, clapping and then running to their Nana and Papaw.
Now I have to admit I had a tinge of jealousy and a slight feeling of rejection. It was short lived because the joy and enthusiasm of those two little boys is infectious. That along with knowing why they are so glad to see Barbara and Kirk.
It is more than comforting knowing the circle of love and caring that exists for these little boys. A circle that we now know extends to their big boisterous, gregarious and amazing Uncle Kenny.
All that said, Cole and Cale's language skills are getting better every time we see them. Cole told Marcia he wanted "sausage and eggs" for breakfast last Saturday, Cale added "me too". That was a new one for him.
Cale has mastered all the cut out puzzles we have, so we will have to find some new ones. Cole has worn the pages out of his "Thomas" books. So the same is true for those. Cole has become less interested in the "DVDs" of Thomas. He still puts one in the player and turns every thing on but does not tune every thing else out. He plays with toys more and with Cale. However he stops most times when the the musical sessions come on. He claps and dances to the music with a pretty good sense of rythym.
I will leave it there, but below you will find links to Fragile X Syndrome information. If you would like to know the causes, symptoms, treatments, research and statistics please visit these sights. A cure for Fragile X would be the greatest thing for these children which may be achievable, but a future where people are educated about their condition, understanding and supportive is acheivable. Please help.
http://www.fragilex.org/html/resources2.htm
http://www.ghr.nlm.nih.gov/condition/fragile-x-syndrome
http://www.conquerfragilex.org/about_resources.php
Monday, May 2, 2011

Recently in the Valdosta Daily Times Rant and Rave section a reader posted a rant concerning a child that was screaming in a store and the mother was ignoring the child's behavior. The ranter seemed to be taking both displeasure at the behavior of the child and the behavior of the mother. The ranter went on to give advice on the discipline need by the child. Offering that such a poorly behaving child should not be out in public. In a subsequent rant posted by another reader it was suggested that the child should be put on a leash.
A year ago I probably would have agreed with both ranters. "Children should be seen and not heard". There are children with behavioral problems that can be addressed with the usual disciplinary actions. There are children with developmental disorders that have behaviors that cannot be addressed with the same methods. I have learned not to be so quick to judge.
If your children are grown or if you never had children at all it is easy to draw quick conclusions as to "what I would do if that child was mine". Think of it in this light. That child needs support from the grown ups around it. If we all grow old we too will seek support from the "grown ups" around us. Remember the old addage, what goes around, comes around.
That said,
Where do I start? I want to keep this interesting to everyone that takes the time to read my ramblings about my two little buddies and their big sister, AKA "the pill".
Erin, Cole and Cale were overnight guests Friday. As usual they push Marcia and I to our physical limits.
Having all three, Erin, Cole-Man, Cale, changes the dynamic. When Erin is here by herself she is completely independent of Marcia and I. She wants to do everything for herself. Throw the two boys into the mix and she has to be in the middle of everything. Telling the boys what and what not to do, telling Marcia what they want and don't want. She trys to mother the boys and protect her status as NO. 1 at the same time. It is sometimes humorous and sometimes frustrating. I truly feel for her Mom, Brandi. Forty eight hours of Erin's struggle to be both protaganist and antagonist wears me out. But still as soon as she and the boys leave I miss them all.
That aside, Cole played hard from the time Brandi and Chris dropped them off till he went to bed. Driving his push car, trying to ride the trike and swinging in his swing. They all went upstairs around 8:30 and had their bath and dressed for bed. Marcia sleeps upstairs with them when they are here and I sleep downstairs.
About 2:15 AM, I hear this little voice. "Pappy, Pappy, where's Pappy". It is Cole-man. Marcia puts him in the bed with me and goes back up stairs. Cole talks and jumps and gets out of the bed. Turns on the TV. Then he wants to watch "Thomas".
"Thomas is on the DVD in the den. So I grab a blanket go to the Den, get in the recliner. Cole turns on the TV puts "workshop" in the DVD and climbs in my lap.
Then he says,"need pillow, need pillow Pappy". I tell him "well go get a pillow".
He climbs down, goes to the Bedroom and returns with two pillows. Gives me one and crawls in Marcia's chair with the other. I am thinking good he will go to sleep and then I can put him in the bed. Right!
Once he is in Marcia's chair, he calls out,"Pappy, covers, covers Pappy. I get up and give him a comforter from the couch. Again thinking in a matter of minutes he will be asleep. Wrong!
He climbs out and retrieves his "Thomas" book. Climbs back in my lap. "Read Pappy, read. He points to the first page and smiles as he say "click clack, click clack" the words on the first page. He turns a few pages and points, "Hiro stuck in mud" then turns the page and says, "uh-oh Spencer" then turns a page or two. "Hooray for Hiro" he says as he points to the page. We repeat this for a few more minutes, then he changes the DVD again. "watch splish splash" then watch "Thomas bration"(celebration). This goes on until about 5:15 before he finally goes to sleep in my lap and I carry him back to bed where we both sleep until we are rudely awaken by his "Granny" at 7:00 AM.
Needless to say I was not a bundle of energy for the rest of the morning.
Back to the book and the pages that Cole recognizes. Don't know what it is he recognizes that allows him to repeat the words printed on those pages but he does put the right pages together with the words. Not only that he uses the right inflections on the words in the context of the story. He raises his eyebrows and draws his mouth into a circle and takes a deep breath as he say "uh-oh" then claps and bounces as he says "hooray for Hiro".
Doesn't sound like much for a five year old, but it is light years from where he was a year ago.
Then there is the other side. He don't like bandaids. Marcia put a little ointment on an insect bite that was red. Then she put tried to put a bandaid over it. We got the bandaid on, but he wanted it off. "Take it off, take it off". Then we struggled to get it off. Then he wanted the one Marica had put on Cale off also. He tried to take it off Cale's leg.
"Band aid off, Cale. Bandaid off Cale. Cale don't want it". As soon as we took Cale's off Cole calmed down and everything was fine.
Cale is making progress as well. He is talking more and asking for the things he wants and wants to do with short phrases. He still is hard to understand at times but he is definitely putting words together. Cale is not as attracted to the DVDs as Cole. He plays with toys and puzzles more. He loves to climb. He is constantly on the kitchen table or our bed. And he loves to emulate everything Cole does. If Cole swings, Cales swings. If Cole gets in the "car", Cale gets in his car.
I try to get each of them to count when they are here. In the swing I get them to count 1,2,3 before I push swing. Cale is counting up to 6 on his on in the swing but as he went up the stairs on his way to bed he counted the stairs 1,2,3,4,5,6,7,8.
They are learning and every little bit is a blessing.
I will go now, but I will ask that you consider supporting a children's charity.
There are many and I hope that you will visit FRAXA.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.
Thursday, April 7, 2011
Cole and Cale were our guests Friday night, giving us need for some of those energy boosting drinks. They are so energetic, but I guess all 3 and 5 year olds are. From the moment Brandi opens the van doors it is a chorus of "Granny, Pappy, Granny, Pappy and then directly to the swings.
They both buckle them selves and then applaud their accomplishment. Then it is " Pappy,swing me high" from Cole. Cale waits patiently for his turn, not. He is bouncing up and down,"swing, swing". Cole is not satisfied with his altitude until he is able to kick the blades on the porch ceiling fan. Cale is not as much a daredevil, he is satisfied at a lower height.
After a few minutes Cole calls out " I want down, down, Pappy" and like and echo Cale repeats,"want down Pappy". I as Cole what he wants to do. Car, drive car followed by the echo, Cale. Typical little brother wants to do everything big brother does.
The load up in the little "Fred Flintstone" cars. Cole will get them lined up and says 1,2,3,go. Down the driveway they go, their little legs taking short steps to propel the cars. Then at the gate Cole will climb out and begin to push the car back to the porch. Guess what the "Shadow" does. Cole jumps on his trike and guess what the "shadow" does. The poor little "Shadow" forgoes a tremendous amount of supervision as Cole mimics his absent sister, Erin. They both are well supervised when Erin is around. It is amazing though how much of Erin mannerisms and posture Cole exhibits when she is not here to be "in charge".
Last week I wrote of the increase in Cole's vocabulary and how it continues to grow. Although it has only been a week since he was last here his use of words in phrases and short 3 and 4 word sentences has grown miraculously. He ask me to "kiss his hurt" and "Pappy, I want some ketchup" followed by the same for "ranch".
These boys love ranch dressing. They eat it on every thing from green beans to pizza.
Cale's vocabulary and speech is increasing as well. He speaks so softly you have to really listen to understand what he is saying. He brought me my glasses and handed them to me saying, "Pappy glasses". Then "get in Pappy's lap".
I am trying to catalog the new words and phrases for both of them to get a real sense of the changes.
It is not only their ability to communicate verbally that is growing but their problem solving abilities. Cole is doing better with the cut out puzzles and Cale does real well with the puzzles.
I put one of each color building block on the floor, red, green, blue, purple and yellow then ask Cole to bring me another block. I made him put the block with the same color block and by the third set he was matching the colors on his own. But then Cale want to show off his throwing arm and style, so I gave up for the time being on a repeat.
Then after breaking up throwing practice Cale grab my arm,"lay down, lay down". I said I will if you get me a pillow. He said "pillow" or something close, then ran to our bedroom and returned with a pillow and pulled me to the flow. Once on the floor I became the trampoline again. They both jump on and over me until I mention sponge bob cookies.
I got the cookies, took the clothespin off the bag and let them help themselves. Cole took the bag and they ate out of it. Cole loves to control the number of cookies Cale gets it seems. But then something happened. I had been showing Cole how to put the clothespin back on the bag the last time they were here. Well he grabs me by the hand with the bag of cookies in the other. Pulls me to the pantry, opens the door and pointed up and said something I did not understand although he said perfectly clear.
He pointed and said "clamp". I thought he saw something in the pantry he wanted to eat. He points again and says,"clamp, Pappy, close it". He was asking for the clothespin but calling it a clamp, which a clothespin is. I took the clothes pin and ask him, this. He responded "yep" "clamp, pinch it". I gave it to him and he proceeded to put it on the cookie bag and with a little help which he ask for, "help, me, help me", we got it on the bag. He then told me "put it up" and I did.
We have no idea where he got the word clamp from much less how he correlated it with a clothespin. But he did.
He is forever toting his Thomas book and asking Marcia or me to "read it". While I lay on the floor with Cale and Marcia was in the kitchen, I heard Cole behind me. I rolled over to see him in Marcia's chair where she reads to him. He was sitting there with his book open, turning the pages and naming the characters from each page. Something we had never seen him do. Then he say "one, two cats". There is one page with two cats in the illustration. He went from front to back pronounced "the end" and then started again.
Within a matter of minutes he had exhibited behavior we had never seen before used words he had never used before. For those of you with FX children you have to know the elation and emotion that runs through you when things like this occur. To anyone reading this without FX children, I hope you will try. Even though Cole is 5,it is the same feeling as a 1 year old beginning to walk and the first time they say Mama or Daddy.
Well, I have rambled on here enough. This Autism Awareness Month. Autism, much less Fragile X, was not anything I gave any thought to a few years ago. Now I do, I hope that my ramblings will have some positive effect on the way children and adults with development disorders are viewed by those not immediately touch by their lives. I hope that people will remember they are not only someones' son, daughter, brother or sister, they are somebody, period.
Thanks.
Tuesday, March 29, 2011
This blog has been about my grandson Cole, but I now must also give his little brother Cale more attention. Cale is 3 1/2 and is just as full of life as Cole but he also has learning disabilities. He only say a few words and only a few phrases and you have to listen to here those. On the upside he learns tasks pretty rapidly, understands things you say and ask him to do. He is such a cute little boy with a smile that will melt you.
He has a temper and will throw a little tantrum now and then. But he always looks to see if you are reacting the way he wants and is pretty soon smiling again.
Cale and Cole play well together and Cale wants to do everything Cole does. If Cole wnats to swing, Cale wants to swing. If Cole ask to get down, Cale immediately let's you know he wants down as well. They ride in their little cars and on their trikes.
They sometimes have little tiffs but mostly share their toys.
Cale is not as drawn to the Television and DVDs as Cole. Cale would rather play with the vacuum or climb up on the tables. He is in constant motion. Cale shows more ability to figure out the puzzles and recognize colors than Cole. Their abilities are different and we can only hope that Cale will continue to make progress to catchup.
I have been keeping up with Cole's vocabulary and his use of phrases. They are really increasing. He is up over 200 words he uses and more than 30 phrases. Cole will repeat almost any word you say, he just does not use the words other wise. He can also use a word one way but not another. Most notably his name. He will use the phrase "Cole's turn" when playing. You can ask him if his name is John Baker, he says no. You can ask him "what's your name" and barely stammers something out. Cole being unrecognizable and Bake barely so. An effect of the brain connections again.
He has a new Noah's Ark book. Cole loves books, both to read from and to attempt to eat. He will sit in my lap, holding the book and turn the pages. I point out the elephant and he would repeat elephant, then giraffes, then lion and so on. I could then ask him to find the elephant or lion or giraffe and he would turn the pages until he found the animal I ask him to find. All the time saying "find it, find it". But he does not say the animal's name without prompting.
I assume this is due to the connections in his brain being incomplete and not be able to relay the words back to be spoken. I am still learning about FX.
Cole can count to ten with the exception of 4. I watched him through the kitchen window as he push Cale in the swing. He would say "count Cale". Then he would count to Cale. One, two, three, five, six, seven, eight, nine, ten. Then clap and holler "yeah!!!"
We are working on Cale, he is up to four and then he begins to laugh.
Cale is pretty much the same way. He will repeat words though not as many. Cole gives commands such as "Pappy, come here", Granny sit here", "Turn off the light". Cale does not yet. When playing with the cut out puzzles, I will give Cale a puzzle peice, say an fire truck. I will say fire truck and he repeats that although it is not that well pronounce. But then he will ask, "where does it go?" I always answer "I don't know". He then puts it in place and says, "goes here". Of the several puzzles he has he learned to put the pieces in place with just one or two tries. That is very encouraging.
They come to stay with us every couple of weeks and most every time Marcia and I can recognize things, some small and some significant, they both did not do on their last visit. One thing they both do on every visit is make their Granny and Pappy very happy. They run to hug our necks, give us kisses, sit in our laps and make us laugh.
While I wonder what life will be like for them in years to come, years that I may or may not share with them, I am comforted by their overall good nature and desire to learn.
I mostly pray that the world will learn to accept them as they are and perceptions will change for children and adults with intellectual challenges. It is easy to put children with special needs in a good place in your heart, I just hope that they will not outgrow that place as they become adults with special needs. After all we are all God's children, I have to believe they have a special place in his heart.
Please support a children's charity.
He has a temper and will throw a little tantrum now and then. But he always looks to see if you are reacting the way he wants and is pretty soon smiling again.
Cale and Cole play well together and Cale wants to do everything Cole does. If Cole wnats to swing, Cale wants to swing. If Cole ask to get down, Cale immediately let's you know he wants down as well. They ride in their little cars and on their trikes.
They sometimes have little tiffs but mostly share their toys.
Cale is not as drawn to the Television and DVDs as Cole. Cale would rather play with the vacuum or climb up on the tables. He is in constant motion. Cale shows more ability to figure out the puzzles and recognize colors than Cole. Their abilities are different and we can only hope that Cale will continue to make progress to catchup.
I have been keeping up with Cole's vocabulary and his use of phrases. They are really increasing. He is up over 200 words he uses and more than 30 phrases. Cole will repeat almost any word you say, he just does not use the words other wise. He can also use a word one way but not another. Most notably his name. He will use the phrase "Cole's turn" when playing. You can ask him if his name is John Baker, he says no. You can ask him "what's your name" and barely stammers something out. Cole being unrecognizable and Bake barely so. An effect of the brain connections again.
He has a new Noah's Ark book. Cole loves books, both to read from and to attempt to eat. He will sit in my lap, holding the book and turn the pages. I point out the elephant and he would repeat elephant, then giraffes, then lion and so on. I could then ask him to find the elephant or lion or giraffe and he would turn the pages until he found the animal I ask him to find. All the time saying "find it, find it". But he does not say the animal's name without prompting.
I assume this is due to the connections in his brain being incomplete and not be able to relay the words back to be spoken. I am still learning about FX.
Cole can count to ten with the exception of 4. I watched him through the kitchen window as he push Cale in the swing. He would say "count Cale". Then he would count to Cale. One, two, three, five, six, seven, eight, nine, ten. Then clap and holler "yeah!!!"
We are working on Cale, he is up to four and then he begins to laugh.
Cale is pretty much the same way. He will repeat words though not as many. Cole gives commands such as "Pappy, come here", Granny sit here", "Turn off the light". Cale does not yet. When playing with the cut out puzzles, I will give Cale a puzzle peice, say an fire truck. I will say fire truck and he repeats that although it is not that well pronounce. But then he will ask, "where does it go?" I always answer "I don't know". He then puts it in place and says, "goes here". Of the several puzzles he has he learned to put the pieces in place with just one or two tries. That is very encouraging.
They come to stay with us every couple of weeks and most every time Marcia and I can recognize things, some small and some significant, they both did not do on their last visit. One thing they both do on every visit is make their Granny and Pappy very happy. They run to hug our necks, give us kisses, sit in our laps and make us laugh.
While I wonder what life will be like for them in years to come, years that I may or may not share with them, I am comforted by their overall good nature and desire to learn.
I mostly pray that the world will learn to accept them as they are and perceptions will change for children and adults with intellectual challenges. It is easy to put children with special needs in a good place in your heart, I just hope that they will not outgrow that place as they become adults with special needs. After all we are all God's children, I have to believe they have a special place in his heart.
Please support a children's charity.
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