Families of special needs children often feel isolated but a local nonprofit’s mission is to help guide them on what they call the “journey.”
Sharing Hands A Respite Experience (SHARE) helps families navigate their journey with a special needs child touching on everything from advocacy to education to playtime to a sense of community for Permian Basin residents.
Two of the women who lead SHARE, Executive Director Traci Hopper and Cali Trowbridge, marketing and development director, have a passion for helping special needs families.
That passion comes from their own journeys.
Trowbridge is mom to a 7-year-old autistic son. Hopper is a widowed mother of three, including an adult daughter with Down syndrome. They have both navigated the often difficult health, insurance and education struggles that come with raising a special needs child.
They also understand how isolating it can be for families with a child of special needs. There are fears for the hard things — like the future of the child — and the everyday things like attending events or even a simple trip to the grocery store.
What makes SHARE unique is the focus on the whole family. And, it is all free.
“We offer services to families raising a special needs child. We tailor the services and all the services are for the family and not just the child.”
Both women detail how important it is for families to have respite time. They talk about the Friday night respite sessions that offer parents a safe place to leave special needs kiddos with folks who understand them for a few hours. “Some parents use the time to go to the grocery store, or even to clean,” Hopper said.
That is one of many services the group offers.
A bit of history
SHARE became a nonprofit in 2009 and now has a staff of six full-time and one part timer. They work in Odessa and Midland and surrounding areas. They have a good volunteer base, but are always looking for more volunteers.
The camaraderie that comes from various SHARE events is critical, both said. There are holiday events like a sensory Santa time, which offers families a shot at getting a photo with Santa in a calmer atmosphere. There are events just for the siblings of special needs children and time for respite that some weary parents use to relax.
But there is also guidance on the rights of special needs children. Valuable advice from those that have been and are still there, Trowbridge said.
The friendship between Trowbridge and Hopper is apparent. Hopper’s children are older while Trowbridge’s kiddos are young. Through SHARE and their work with others they find a safe place with lots of answers and support.
“Some of it is going to be the support side where we’re literally like a support group,” Trowbridge said of SHARE. “And that is the difference with us. We offer support and it is all at no cost.”
She said the only qualification to become a member of the group is to have a special needs child. “I don’t know if member is really and truly the right word,” Hopper said. “We are a family.”
Their official statement is “supporting their efforts to establish and maintain strong and successful families.” The group was founded in 2005 by the Rev. Tom Jones, a special ed teacher in West Texas, as a small church ministry offering respite care for families.
Since that time, SHARE has added support groups, home respite care and even a collaboration with local hospitals to provide NICU (Neonatal Intensive Care) support. They have also expanded to host conferences on genetics and transitioning to adulthood.
By 2014, the headquarters was moved to Midland Shared Spaces, and in 2015, a collaboration with Agape Counseling and Samaritan Counseling began to offer professional counseling to parents and siblings.
Trowbridge originally came to SHARE just a few years ago looking for help with services for her autistic son. She talked about how waiting lists for services like ABA (Applied Behavior Analysis) therapy and speech or occupational therapy are often long and just learning to navigate what is needed to help the child.
SHARE offers so much in terms of advice and the respite care on Friday nights. They use room leaders who are volunteers to care for the children during respite care. They do not currently have a waiting list, but continue to seek volunteers.
The group makes sure that families have a calendar of events, which also includes mom and dad nights out and Sibshop, which is just for siblings. There are counseling times and support groups, again all offered for free.
Top Soccer started Saturday in Midland and offers free soccer for special needs children of all ages. Hopper was there checking on the young athletes and handing out red soccer shirts.
She offered encouragement for new athletes and parents and said the event is in conjunction with Midland Soccer.
Hopper has seen SHARE grow over the years as she is one of the original parents involved. She said Jones attended a parental support group she was also attending. “It just kind of grew from there. … Now it is a community and it’s to build friendships.”
The group now gets funding through the state that is designated for children with special health care needs. She said they do not work with mental health issues, ADHD, bipolar or schizophrenia. She said Down syndrome, cerebral palsy, spina bifida and autism are their main focus.
Both women are proud of the growth of SHARE and its staff and volunteer base. “You have got to have a heart and patience for it,” Trowbridge said of the work.
Hopper and Trowbridge said the support they have found through SHARE, and with each other, has helped both women with the challenges of family life with special needs children. Hopper’s daughter is 24 and Trowbridge’s son is 7, but they have the same concerns.
“We were talking about a lot of the similarities … we go through and feelings that we have, even though mine’s older,” Hopper said during a recent interview. “I can mentor Cali as she is going through her journey of some of the things we have tried.”
They talk about the get-togethers, potlucks and serious conversations that the parents are able to have with each other as a treasured part of their lives.
Trowbridge said families have to learn that it is OK to grieve or mourn things that will never be. “When my son started his path, I really mourned the holidays because of what my family had always done was not what we were going to be able to do anymore.”
She said SHARE offered support for that grief. But it also offered her young family activities that her family could do without fear of “meltdowns” that often occur with special needs children.
Her 3-year-0ld daughter has also had the chance to interact with other siblings of special needs children and that has been an important thing for her family.
She said the Sensory Santa event offered by SHARE is a designated time where kids go back and meet Santa with just their own family and take photos. “There is no line and it is quiet and calm.” They also partner with Midland’s Bynum School for an Easter egg hunt.
Through SHARE, Trowbridge has found peace and acceptance. “We’ve discovered that our normal may not look like everyone else’s normal. But we have one and that is just as great.”
Support groups for both moms and dads have helped both women. “The dads do some activities together,” she said.
Through SHARE both have found a circle of friends who understand where they are on their journeys. “It gets to where everything looks kind of normal to you but when you start it is hard.”
She added she is better equipped with a skill set to cope with it a little better.
There are mom support groups once a month in both Midland and Odessa.
Hopper still appreciates getting the support that comes from the groups and also sharing what she has learned over the years with her journey. She said her daughter, now 24, is a typical child with Down syndrome. “We’ve had a lot of ups and downs,” she added saying she has the heart conditions associated with Down syndrome.
“She had open heart surgery when she was 4-months-old … She’s had a lot of health issues,” Hopper added.
She said because of that she has learned how to work with the system and figure out how to best take care of her. “So we have kind of gone through that journey a little bit.”
SHARE has helped with that journey and both women agreed it is here to help all families in the Permian Basin with their journey.
She’s proud that SHARE now partners with different agencies on the mental health side to help families with therapy. Hopper is a valuable resource for parents learning the ropes.
She said a special sensory movie recently had a parent worried that their child would be disruptive or bother someone. “I encourage parents to stay. They’re not bothering anybody at all,” she said. “I want people to feel comfortable to go into public because the public needs to see us.”
Through SHARE and all it offers parents can find that comfort.
Find out more about SHARE or volunteer or even make a donation at sharewtx.org
