DEEP IN THE HEART OF TEXAS - TOM JONES

I would like to nominate TOM JONES as a HOME TOWN HERO for making extraordinary contributions to our close-knit community of Midland, Texas and surrounding towns. This letter also includes “PATRICK’S STORY” as both of their stories go hand-in-hand, to a certain extent. You may also decide you want to publish Patrick’s Story under your Kids Making A Difference. We would be honored!

Tom Jones, a special education teacher at a local elementary knows firsthand the hardship and stresses that a child with special needs or a disability puts on a family. He grew up with epilepsy.

I met Tom about 4 years ago when he visited our local support group for parents of special needs children. He was a shy man, soft-spoken, but we could tell he had a soft spot for our special children. We were all intrigued with him as he spoke of creating a program within his church that would sponsor a respite service for the parents. It was almost unheard of in our community….someone willing to accept, support, and love our special children and their siblings while offering parents a night away from the never-ending responsibilities.

So, in 2005 SHARE (Sharing Hands A Respite Experience) was started by First Christian Church (FCC) of Midland, Texas. The mission of SHARE is to provide respite care and support for families with children who have special needs. This includes children with Autism, Down Syndrome, Cerebral Palsy, Muscular Dystropy, etc. and also includes fun activities for their siblings. There is no cost whatsoever for this service.

Through Tom’s firsthand experience the church realized that the demanding job of raising a child with special needs puts a great deal of mental and financial stress on a family. Often parents have little time to spend with one another or time to devote to fostering outside relationships. FCC’s ministry through the SHARE program has been one of love, acceptance, and support. Parents with children who have special needs have been embraced and assured that they are not alone in their journey. I know of no other organization that has as its focus the families of children with special needs.

In 2005 SHARE began its respite service with 5-6 core children. (As a parent of one of those original children, I wrote a short, heartwarming story titled “WHAT SHARE MEANS TO ME”; I will attach at the end of this letter). SHARE now hosts 28 families from the Midland/Odessa community and surrounding area towns. It has since become a non-profit agency, and has united community agencies for a common cause. SHARE now offers two nights of respite service each month. SHARE sponsors additonal activies throughout the year with the hightlight being the annual Christmas Candelight Dinner for the families.

But Tom had something else weighing on his mind. Because of his disability, the relationship with his sister was estranged. He felt the lonliness and rejection his disability had caused. He wanted to reach out to the siblings of these special needs children. He started a SIBSHOP chapter in Midland, Texas. This is the only chapter in the state of Texas.

SIBSHOP is a support program for the brothers and sisters of children with special needs. SHARE has brought together 10 organizations who have collaborated to sponsor this program for the siblings where they can talk about the joys and concerns that are unique to them as they grow up with a brother or sister who has a disability.

SIBSHOP is near and dear to my heart. My older son, Patrick, was also one of the core volunteer members when the group first started. Tom knew of the turbulent relationship with Patrick and my younger son, Tyler. He was so excited about the personal growth he witnessed thru Patrick via the Sibshop program, that he wrote it down it on a whim. He took this story with him and shared it throughout the community. He knew how vitally important this new organization could be because he had witnessed himself. I believe because of Tom’s love for our special children and because of Patrick’s Story, the SIBSHOP program grew in leaps and bounds. So many people were touched and encouraged by the story and oftentimes brought to tears. One local organization gave a $25,000 donation after hearing Patrick’s Story.

So now you can see how both Tom Jones, spec-ed teacher with a heart of gold, and my son, Patrick, are my heroes; both are champions for special needs children and their families. Please consider spotlighting these two unique individuals in AMERICAN PROFILE.

Please go to the website for SHARE for more information: SHAREWESTTEXAS.ORG

You may contact me at 432-684-4424 if you have any questions. Thank you for taking the time to read these stories and for allowing me to publicly honor these two “gentle” men.

Sincerely,

Jo Elaine Weeks

TWO ATTACHMENTS:

PATRICK’S STORY and WHAT SHARE MEANS TO ME

 

PATRICK’S STORY

Patrick is a 16-year-old boy who attends Midland High School. He is a tall, gangly boy who wears shorts and his baseball cap backward. If you were to go to Midland High you could not pick him out because he blends in with all of the other teenagers there. Patrick is your normal teenager. Everything about him is normal except for one thing: his brother. Patrick’s brother, Tyler, is a 14-year-old boy with a nonverbal learning disorder. Tyler stands out in a crowd. He feels awkward in social situations and little things like noise bother him.

Patrick’s relationship with his brother Tyler can be described as rocky at best. Patrick resents Tyler and his disability and the way it controls the family. So much attention is given to Tyler that Patrick often feels left out. Patrick also gets angry with his brother sometimes. Tyler seems to always get his way and everyone has to make sacrifices because of Tyler and his disability. It was even embarrassing to Patrick to have a brother with so many quirks.

Patrick didn’t fully understand Tyler’s disability, but it really didn’t matter because he had all of these emotions. He felt isolated. Patrick didn’t have any friends who had a brother or sister with special needs that knew what he was going through. He felt he couldn’t really say a lot to his family. He feared he would come across as whining and complaining when everybody else was working so hard to help Tyler be successful. So Patrick did what a lot of siblings do, he stuffed these thoughts and feelings because there was no place to express them. Patrick didn’t want anything to do with his brother because of the pain it had caused him.

In August 2007, Sibshop was held at Rays of Hope, a children’s grief center. Patrick’s mother made him go because she thought it would be good for him. He didn’t want to attend Sibshop. You could tell that he really didn’t want to be there because he didn’t make eye contact and was jumpy. Actually Patrick was too old for the Sibshop group, so we used him as a helper for the older sibling group. He was paired with another teenage girl who attends Midland High and has a sibling with severe cerebral palsy. She was very well adjusted and loved her brother dearly. Having a brother with special needs was a positive experience.

Patrick didn’t say much but started to talk a little as the Sibshop ended. He left quickly after the Sibshop was over. His mother came by and was in tears. She was so happy that he came. It hurt her to see her two sons have such a bad relationship.

I didn’t see or hear from Patrick until November 9. Patrick showed up at SHARE (a respite care ministry for children with special needs) unexpectedly and wanted to volunteer as a helper for the siblings. He had given up a chance to hang out with his friends on a Friday night. The young man, who didn’t want anything to do with anything special needs, was giving up a Friday night to work with children who had disabilities. This was a huge step for him. I asked Patrick who he would like to work with and he said, “The siblings.”

As it turned out, SHARE needed him to work with a 10-year-old boy named Logan who has emotional problems. They shot baskets and hung around the gym. Logan told Patrick, “I’m glad you came tonight. Will you come back and play with me next time?” Whether it was being humbled by working with children who have disabilities or seeing other people who were loving and caring for these kids, something made a big impact on Patrick. (The fact that he worked with good-looking female nursing students from Midland College also may have been a factor.) I could tell that Patrick had changed since I saw him last. Perhaps he had a sense of acceptance of his situation, forgiveness of himself and brother, or comfort in knowing that he was not alone. I do not know, but Patrick was a changed person.

The next day , November 10, Patrick came to Sibshop to be a volunteer. He worked with the older sibling group. Patrick was paired with Jacque Carillo, an adult sibling who grew up with a sister who is deaf, blind, and has multiple disabilities. Jacque is also a high school counselor in Odessa. She and Patrick had a chance to talk privately. Jacque reported that Patrick began to open up and talk more during the afternoon activities. Patrick seemed at ease with himself and happy to be at the Sibshop. For our closing, we went around the group and said what we were thankful for. When it was Patrick’s turn, he said, “I am thankful for people who care about special needs kids.”

Since that weekend in November, his mom reports, “Patrick has been more compassionate. You know, he really is a good kid. “

Recently, Patrick had some friends come over to his house. They all went to get some ice cream. Patrick invited Tyler, his brother, to join them. . . .

The following is an e-mail I received from Patrick’s mother after she read

“Patrick’s Story”:

Tom, that story just touches my heart so much. It's as if you were living in my house with us.

Patrick has shown such remarkable growth since first attending Sibshop. He used to be ashamed of his brother; I know this because a kid from Patrick's school finally came over to the house. He had known Patrick for about two years. When he walked through the house and saw Tyler, he commented: "Oh, I didn't know you had a brother!" Tyler wasn’t introduced; they just walked past him. It was hurtful for me to witness but I felt even worse for Tyler.

I can tell you that things are so much different now. The senseless bickering between them has gradually stopped. Tyler is being included in some of activities that Patrick is doing (a HUGE improvement), even if it is hanging out in Patrick’s room watching him and his friends play Xbox. Patrick's friends are also interacting with Tyler more, instead of walking past him as though he were a piece of furniture. Now I can ask Patrick if he will take Tyler to Blockbuster or pick him up from school, and it’s "No problem, Mom." (Blockbuster used to be a fight: Patrick didn't understand why Tyler always rented the same “stupid” games over and over. Tyler would be defensive, and we would all leave mad.)

One of the happiest moments lately was when Patrick and his "entourage" left to get fast food. I asked them to please take Tyler to McDonald's. I expected them to drive-thru with him. They were gone a long time. Tyler was so excited when he got home because they all went INSIDE McDonald's and sat TOGETHER at the same table and all ate together and talked. He felt so important! How cool is that?!?!? Now when the kids come over, they all chat with Tyler, give him a hug, and a high-five. It’s amazing how the Sibshop not only touched Patrick's heart, but the other kids’ as well. They’re more friendly towards Tyler since Patrick has been modeling this kinder, gentler attitude. Don't you love the ripple effect?

The other night Patrick told me,” You know, I can tell Tyler is getting a lot better. He doesn't act like he used to." I just smiled because it is Patrick who has had the attitude adjustment! I'm extremely proud of him because I knew this gentle spirit was in there somewhere, buried deep. So, thank you Tom, for SIBSHOP!!!

PS. Patrick turned 17 last Friday! And, he got his braces off since you saw him.

 

Before and After

If you were to ask me what SHARE means to me, a mother of a fourteen-year-old boy who is in the autistic spectrum, I could better explain by telling you our BEFORE and AFTER story. I want to share this story with you because the SHARE ministry has made an incredible difference in the life of our son.

BEFORE:

For years my son spent every day after school AND every day during the summers alone, no friends, no playmates. I would be his buddy as much as I could but I wasn’t really a good substitute, as hard as I tried. Oh sure, there were kids in the neighborhood that would come over and play occasionally, but only if their playmates weren’t home and there was absolutely nothing else to do. Even though these children were in the same grade and same age as my son, they just didn’t “get” Tyler with his idiosyncrasies and limited interests. I would very frequently invite kids over for him to socialize with, always enticing them with a trip to McDonald’s and the movies or Chuck E. Cheese. The kids were always available for these fun activities but there was never an invitation back to their houses to play. But, for years, we continued to entertain the neighborhood kids and even some of my son’s school classmates so that he could have a semblance of a normal childhood. But the early school years were difficult; he was bullied and taunted almost on a daily basis. He recognized he was different and after a while just wanted the safety and seclusion of his room as the daily disappoints were just too great and too frequent.

AFTER

My son is one of the original members of SHARE. At first, he was a little overwhelmed with all the noise, children, and activities. But, very quickly, he fell in love with SHARE, the volunteers that greeted him with a hug, the boys in his group. I’m not exaggerating when I say that only since the inception of SHARE he has formed lasting friendships. He has REAL FRIENDS that call him on the phone, invite him for movies and sleepovers, friends that actually understand him, accept him, and love him for who he is.

Since being a member of the SHARE family of kids, He has grown and blossomed. He has become more confident and sociable. He is on the A/B honor roll in junior high and is a real delight to his teachers.

Without the support of SHARE and its volunteers, there just might not have been an AFTER to Tyler’s story!

Jo Elaine Weeks

 

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