Sunday, November 21, 2010

Cole was his usual self yesterday. Full of energy and thought Pappy was too. He was standing at the deck gate with Cale when I drove up and they both began to wave. Cole calling "Pappy, Pappy".

Boy if that want lift your day I don't know what will.

They both immediately led me to the swing set. "Swing Pappy, swing". They both swang and we sang the number songs. Cole did pretty good. Cale just smiled.

Cole, Cale and Erin have a puppy. Chris found a small puppy in the ditch and took it home. Cole told me the dog was "harley". He called, "come here, harley". Told me, "pet her, Pappy".
So I did. Cole seems to really like the puppy, Cale not so much.

We then went inside where their fatigued Granny was washing our clothes for the coming week.

It was not long before Cale pulled me to the door and said "outside". I ask if he wanted to go for a ride. He nodded and said, "yeah". Cole ran to the door saying "wanna drive, Pappy". Enough said and we headed to the truck.

When we got to the end of the drive, I began to turn left toward the dirt road to Ochlawilla Church. Cole spoke up immediately, "not that way". I said if you want to drive we have to go this way. He replied, "wanna drive". I turned on to the paved road and toward the dirt road.
As I made the left turn on the dirt road Cole was unbuckling his seatbelt and climbing over Cale.

"Drive, I wanna do it" he hollered. So I put him on my knee behind the wheel. He began to play with the turn signal and every other button on the dash with one hand, holding onto the steering wheel with the other. I told him to watch where you are going. He shot back, "watch the road".

We travel down the road to the forks and beyond to a turnaround point. I told Cole it was Cale's turn. Cale had been sitting calmly, sort of, waiting for a chance at the wheel. So Cole helped me turn the wheel as we backed up. "Backing up", "Cale's turn, Cale's turn" Cole repeated after me.

By this time Cale was jumping up and down wanting out of the seatbelt. Cole reluctantly but without much coaxing sat down in the seat and pulled out the seatbelt and I helped him buckle it.
Got Cale loose and put him behind the wheel. Cole said, "Cale, watch road".

We repeated this exchange a few times on the way back. When we got to the paved road I buckled them both back up. Then pulled toward their driveway. As I began to turn Cole said emphatically, "NO, NO, go to Granny's house". He missed his swing on the carport, it goes "higher, Pappy, higher" than the one in their yard. Cole loves to go high and fast.

Back in the house they brought me the throw pillows from the sofa, then Cole told me to "lay down" pointing to the floor. They both love to wrestle around on the floor and use me for a trampoline of sorts. Cole would tell everyone when it was their turn. "Erin's turn, Cale's turn", then "my turn" he would proclaim climbing up on my belly and saying "watch Pappy" as he stood up on my abdomen and bounced to the ground.

You can tell when something confuses him but his memory is good. I point to the trees along side the road and ask him what they were. He knew they were trees, but when I ask him what color the trees were he said red. I told him they were green. I ask the same question as we came back and he responded "green".

It was a great time with Cole and Cale.

Here is a link sent to me by June Lawson. It explains Fragile X and provides other information on promising research.

June's son is a Fragile X child, she has been very helpful and encouraging.

June is a supporter of Easter Seals and I am going to research their support of Fragile X.
Easter Seals has been around a long time supporting research and helping children with disabilities. Please consider Easter Seals as you make your holiday gifts this year.

See y'all next time.

Monday, November 15, 2010

I don't have much to report this week on Cole. Marcia went to their house to wash our clothes.
I had to run the QGMA final golf tournament. That along with the hassle as the consequence of our house fire, have really messed up our time with Cole, Cale and Erin.

Marcia did bring back a good report of Cole's talking and word associations. She said he greeted her with 'hi Granny, where's Pappy?" He told her he had "been sweet boy" and told her "I'm green" referring to pre-k. He had not been in trouble. Marcia said he talked constantly and wanted her to read his books to him. He and Cale are tough pair to handle. Marcia was worn out when she got back to the cabin.

I will have more to report on Cole next week for sure. Hope everyone will give it a look and keep him and all fragile X children in your thoughts and prayers. We are fortunate that Cole seems to have mild Fragile X syndrome. Some parents and families face much more dire circumstances.
A cure for Fragile X is possible and treatments are improving. Fragile X is a leading cause of Autism and between the two millions of children are affected.

There are no warning signs for Fragile X which is a genetic disorder or for Autism. It can happen to anyone's child.

There are many childhood disorders and diseases and all need our support through charities to fund research and treatments. The Sunshine Lady Challenge by the Doris Buffet Foundation will match funds up to $500,000.00 for all funds FRAX raises between now and January 31, 2011. In some way this will help my grandson, Cole Baker. It will help thousands of other families even more as they deal with a lifetime of supporting and caring for children debilitated by Fragile X Syndrome.

Please consider as you make holiday gifts this year. Why give a tie or sweater when you can offer a the gift of a helping hand? If not then one of the many children's charities such as St. Jude's hospital.

More about Cole and his progress next time.

Thanks for your time and we hope that everyone has a great holiday season.

Sunday, November 7, 2010

Spent Saturday morning with Cole, Cale and Erin at their home.

Cole saw me drive up from the patio door and I could hear him calling "pappy, pappy" as I reach the back door. I don't know who was smiling bigger him or me.

Marcia spent the entire day. We can't have them over at the house because of the fire so Marcia looked after the kids while Brandi went to work.

Cole has 9 stitches above his eye where he ran into the swing, he is just like his dad. He is accident prone. The fragile X may play some part in that but this is his second time getting stitches to his head from running into something. He goes 90 miles and hour all the time until he collapses.

He and Cale are now climbers, they climb on everything. Cale climbed on the kitchen table last week while she was in the den, she could hear Cole saying "get down, Cale". They both love to get in the chairs and jump down to the floor. I think Cole realizes that the kitchen table is a little to far from the floor. Which is good. Not sure how Cale would have got down without Marcia taking him off the table.

Marcia discovered Cole had a new book when he brought it to her for her to read to him. It is a Dr. Suess, One fish two fish, I think is the title. Marcia said Cole brought to her and said "read Granny". Then he said "one fish, two fish. When she open the book to read, Cole said one fish, two fish, red fish, blue fish point to the page.

He makes more and more associations between words and pictures everyday. I know that I am hopeful, but I try not to over read anything into things. But it seems that he is just waking up to words and putting them into place.

I will leave it at that and hope for more progress.

I write this as therapy for myself and in hopes it may someone else to help them find reason to have greater hope. I also write this in hope one person will see it and find it reason to make a small donation to

Thanks for your time and thoughts for Cole and his fellow Fragile X children.

Thursday, November 4, 2010

Haven't had a chance to post for several days. We had a house fire which has displaced us.

Cole is going to therapy twice a week. He is making progress. His word association seems to be better. This week when I had him in the swing and we were counting. He did something he had not done before. I have counted and he would repeat the numbers. Then I one say the numbers two at a time to get him to repeat two at a time. I said one, two and he said shoe, then 3,4 and he said "close the door", then 5,6 he said "sticks", then 7,8, he said "shut gate", then 9,10, he said, "do it gin".

I think this is a great sign. He is associating words with others.

He is still just a cute little boy and a real boy at that. Fell of the swing and went to ER for 9 stitches

As always please considered making a donation to FRAXA as gift or memorial to a freind