Three moments in Little League ...

While watching one of the Little League All Star Championship games this weekend, I ran into a Majors Coach from our League who, along with his team of 12 year olds, participated as Buddies at one of Jenelle's Challenger Games earlier this year. When he saw me, he thanked me again for the wonderful opportunity his son had to interact with the special needs kids. I told him that I was thankful to him for the help, but he said, "No, let me tell you how that buddy experience impacted my son's life."

His son is 12 and thus in his last official year of Little League (before going onto juniors, etc.) A friend of theirs is an amature photographer and took photos at each and every one of his son's games this year. A few weeks ago, that friend brought over her photos, and told his son to pick the three he wanted to keep to memorialize his Little League career. His first choice of course was his first home run. His second photo choice, a photo of him pitching. Of course, the two classic things you think of in baseball - home runs and pitching. His last choice? The photo of him pushing Jenelle in her wheelchair around the bases.

The Dad says his son talks about that Challenger game all the time, and how inspired he was by the kids and how they played. Of all the moments in a lifetime of playing baseball, that was one of three he wanted to cherish forever.

Challenger Championship!

"Look at me... I can be ... Centerfield!"

Three Generations of Currans on Curran Field!

Play Ball!

Grandpa's proud moment honoring Jenelle on Curran Field!

Walking with help to First Base!

SAFE!

Update on Visit with Dr. Shields at UCLA

Jenelle and I made the trip up to UCLA yesterday for our 6 month visit with Dr. Shields. As always, he was thrilled to hear of her recent improvements. To show off for him, Jenelle took three or four wobbly steps into his arms, and he had the brightest smile on his face! It was such a joy to see. After going over all the new milestones and recent test results from Dr. Chang, we agreed to stay the course with no changes to her seizure med Felbatol. As for the Tranxene (valium - Jenelle's "happy" drug), he feels we really need to try to wean her off again. If you recall, we tried to wean Jenelle off this drug last summer, only to have her cry constantly when she went through withdrawal. Now that she is back on it, she doesn't cry like she did. This means she is on it because she's addicted, and for no other reason, so we need to get her off it. He told me to take it slow, for as long as it takes. Our last wean was almost 6 months, so we'll see with this one.

The Tranxene wean may be a little easier this time in that we decided to add a new behavior medication. While Jenelle is usually a very happy child, those of you who know her in person know that she is in constant motion and often bites herself or anything near her mouth. Dr. Shields says this is behavioral, and that she is doing it to self stimulate. In order to counter this, he is prescribing a drug called Risperdal. This drug will hopefully take the place of Tranxene, so the wean could be easier than it was last time once we add the Risperdal. Please keep your fingers crossed for us that this works!

We discussed our recent visit with Dr. Chang at CHOC, and I gave him the report from the Neurotransmitter Disease Results, and we discussed Dr. Chang's request for an MRI/MRS. Dr. Shields didn't think the MRI would show anything new, but did feel the MR Spectroscopy could be useful. I know very little about the MRS, other than it provides a measure of brain chemistry. Dr. Shields is going to put in an authorization request for the MRI and an MR Spectroscopy to be done at UCLA (which is what Dr. Chang wanted.) Jenelle will need to be sedated and the procedure is usually done as an out-patient visit. From past experience, I know this could take a month or two to get scheduled. I'll keep you posted once we have a date.

Jenelle is doing really well in baseball and had another great game last week. She gets tired easily when she walks, but is improving greatly each day. Now she can walk the distance from our living room to our stove very quickly! I really need to do some baby-proofing of the house this weekend.

As always, than you for your positive thoughts and prayers. I'll keep you posted!

Opening Day for Little League!

Yesterday was awesome... and emotional! Opening Ceremonies started with all the other division Angels Team on a knee making a tunnel for the Challenger Team. Tears were flowing as we entered the field! After the key note speaker Rex Hudler inspired us all, the first Challenger Game began! This smile says it all...

Here is Jenelle and her buddy taking the ball to 1st base!
After the game was over, Rex Hudler (the red haired guy on one knee) interviewed some of the Challenger Players. Rex's 13 year old daughter sang the national anthem, then his 10 year old son (a Challenger team player) decided to sign like his sister!
Then each kid wanted their opportunity to use the microphone!
After Jenelle's game, we went to Jack's first game where he played catcher. He did well until he took one on the toe -ouch!
And here is Jack in full swing. He thinks his swing looks like Vlad Guerrero.
Daddy and Jack, who was not very smiley at the time.

In the news again - Challenger Baseball

Challenger League a big hit
Children with mental and physical disabilities and their parents embrace new Little League division.
By ERIKA M. TORRES

Denny Curran gave his granddaughter, Jenelle, a pink baseball glove when she was 2 years old.

Jenelle, now 5, has never worn the glove.

Diagnosed with Lennox Gastuat Syndrome, a rare and severe form of epilepsy, Jenelle can't speak, can barely walk and is legally blind. Her parents believe the most difficult part is "seeing other children her age and seeing what she could be doing."

But on Sunday, the Currans participated in an everyday American tradition they never thought would be possible—Jenelle played baseball.

The Tustin Eastern Little League has just started its Challenger Division for children ages 5-18 with mental and physical disabilities.

For many of these children who have watched siblings participate on little league teams, this is the first time they get to play on a team themselves.

Coach Steve Polley said the 14-member team ranges in ages and capabilities but it doesn't hinder the experience of playing.

"We understand they have disabilities but we don't let that limit what we can do with them," he said. "We make adjustments to fit their abilities, not their disabilities."

The team has scheduled 10 games for their upcoming season where they will play against each other. The Challenger players will pair up with a "buddy" from the 11 and 12-year-old Little League team who will assist them with catching, throwing and hitting during the game.

The team is an outlet for the players rather than a competitive sport and there is no scorekeeping, Polley said.

Kathy Mara said her son, Blake, 12, who has high functioning autism, is beginning to socially blossom now that he's on the team.

"His self-esteem is just on top of the world," Mara said. "He doesn't have a lot of friends because of his disability so I think this is really neat for him to develop his social skills."

It's an overall consensus in the group that the parents are enjoying watching their children as much as the children are enjoying being a part of the team.

Kelly Curran, Jenelle's mother, said watching her daughter be the least capable on the team was rough at first but she has embraced the smiles that appear on her daughter's face, a sentiment that resonates with Jenelle's grandfather.

"If you watch those kids play this game, it's is a joy," Denny Curran said. "It's what youth sports is all about."

During Sunday's practice, Jenelle's buddy caught the ball in the outfield and helped her throw the ball while she sat in her wheelchair. There, lying in her lap, was the pink glove her grandfather gave her when she was 2 years old.

Here is a link to the story and some photos - Brett is in a couple of the photos wiht Jenelle and I in the background.

More video of walking (like a drunk!)

I took this video clip on Saturday at the Baseball Academy where Jack's team had batting cage practice. Jenelle is in her Little League Jersey because we had team photos that morning. Look at how she just stands up on her own without holding onto anything! She really liked the mirror and the net that helped her stay up! Enjoy!

Our New Little Leaguer!

Remember last May me telling you about my quest to get a Challenger Division started with our local Little League? Guess who was the first to sign up this morning! Yep, Miss Jenelle!

Opening Day is March 1 and the first Challenger Game is scheduled as the "opening game" for the season. I'm sure I will have some adorable photos to share!

Also, please check out the moving message from the Tustin Eastern Little League regarding its new Challenger Program. Click on their website and then click on T.E.L.L. Challenger Presentation to watch the PowerPoint. It moved me to tears!

Play Ball!

Little League Day at the Angels Game!

On Sunday, our Angels hosted "Little League Day" and all the Leagues in our District got to parade on the field before the game! I honestly don't think these kids know how lucky they are! Here is Brett and his assistant coach with Jack and his the teammates parading on field (Jack being a ham of course!)

If you can believe it, Jenelle has never actually owned her own "Angels" outfit in red. Of course, as a baby we had a lot of red for her to wear, but never anything official with an Angels logo. And now, pretty much everything she owns is pink or purple, so Friday evening I purchased this adorable cheerleader outfit and she seemed pretty smitten with herself!

Before the game, Jenelle and I went into Diamond Club (VIP Season Ticket area) with Grandma to snap photos of the parade. At home, when Jenelle was dressed and ready to go, Jack saw her and said, "Mommy, Jenelle is very cute today!" I think all she was missing was pom poms.

After the pre-game parade, we moved down to our seats near the foul pole which were fortunately in the front row of the Terrace Level (in the shade!) It was perfect, and the ushers were very helpful with Jenelle's wheelchair and such. Unfortunately I had to hold Jenelle on my lap like this the entire game (in fact, you can see her determined face fighting me in this photo!) As you know, she is quite giggly wiggly, so my arms felt like they were going to fall off last night after we got home!

A little later in the game when she calmed down, I was able to sit Jenelle in the seat next to me where she held herself up for a good 10 minutes (and gave my sore arms a much needed break!) She is really looking like such a big girl too! A cute little 2 year old sitting behind Jenelle kept grabbing her curl and pulling it down to make it bounce up! It didn't bother her a bit!

Jack and Daddy enjoyed the game, especially Vladimir's walk off home run to win it! Jack actually got cold in our seats in the shade, so Brett took him down to sit in the sun to warm up. After the game, we went to Grandma's to swim and I got to nap in the sun!

So now our Little League season is over - Jack's last game was Saturday. Jack has a new trophy for his room and we can all rest a bit more until next season! I got some good news in that it looks like the Challenger Division for Jenelle may actually happen next year. At the game on Saturday, I spoke to Rex Hudler (former Angels player, now TV announcer) and he was very positive and excited about the new division. I'm sure next season will be here before we know it!
Hope you had a wonderful weekend!

Blogging Against Disablism Day 2007!

A little more than a year ago, a disabled blogger came up with an idea to celebrate “Disablism”. The idea had a rally call in the post by a British Blogger entitled “One in Seven”, which further defines the term “Disablism” which is not as common here in the United States. Regardless of your geographical location, "Disablism" is a problem that is world wide. Members of our disabled community are far too often excluded and discriminated against because of their disabilities. Even Jenelle has experienced discrimination, and thankfully will never understand.

As her parent and advocate, I feel compelled to participate in this day, to help further the understanding of life with a disability (or in our case, in caring for a disabled child.) I feel compelled, because it is my way of ensuring a brighter future for my Jenelle. Wouldn't the parent of a "normal" child do the same?

According to LADY BRACKNELL, the disabled community is defined as follows:

“We have two things - and only two things - in common with one another:

1. we have some degree of physical or mental functional loss or difference (we have impairments); and

2. we are excluded from full participation in society because we have impairments (we are disabled).”

Last year, I posted a piece about the first time Jenelle was discriminated against because of her epilepsy. I wanted to show our readers that discrimination against disabilities can happen to anyone at any age as she was only 18 months old at the time. It felt good to share our story, and many took notice, including the BBC. This year, in honor of “Blogging against Disablism Day 2007,” I decided to focus on efforts to show how to include the disabled community in our society, and how we try to share Jenelle with our community.

In October, Jenelle will be 5 and thus, eligible to start Little League in the coming spring. In our family, baseball and Little League are our way of life. Even though she is a girl, had she been “normal” Jenelle would be starting T-ball next Spring. While I think this fact would be a little more heartbreaking had she been a boy it is still one more thing Jenelle cannot do.

In 1989, Little League International began a program called “Challenger League”. The Challenger Division was established as a separate division of Little League Baseball to enable boys and girls with physical and mental disabilities, ages 5-18 or the completion of high school, to enjoy the game of baseball along with the millions of other children who participate in this sport worldwide.

Our League does not have a Challenger Division ... yet. The closest one is a bit of a drive for us on a busy day, so we have approached our League and we are asking them to consider starting a new Challenger Division next year. It sounds promising, and if all goes well, Jenelle will be playing baseball next year along side her brother. And in turn, we will be sharing her beauty and her disability with our friends and neighbors in our immediate area and through our love of baseball. And we will be meeting other families like ours in our city and its surroundings, and we'll be celebrating their disabled children as well, and their challenges in life.

One of the ways to over come "Disablism" is to start including the disabled in our society. I find it encouraging that a sport once thought impossible for a person with a disability to play, is now making the game possible for all children with disabilities. Even better, these children with disabilities are assigned to “buddies” which consist of “typical” children in the community and who are already playing baseball. It is a "win win" situation for both. And in the end, we all come closer to understanding the disabled members of our community and their individual needs.

Normal things are never going to be easy for our girl, and baseball is a difficult game. But, baseball is what this family does, and Jenelle is a member of our family. I sometimes still mourn the fact that Jenelle will never take dance class or enjoy playing with dolls the way I did as a child. However, because of the efforts of Little League with their Challenger Division, Jenelle can and will play baseball. And I know she will love it.