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.

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,

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.