Caring for kids with disabilities by caring for the whole family

Families of children with disabilities have long known they need certain supports. Whether mentally, physically, emotionally or financially, the challenges faced by these families are numerous, sometimes even daunting.

was founded as a support to children with disabilities, and by extension, their parents. When the kids go off to summer camp for a few weeks, it gives mom and dad much needed respite.

As ESP has expanded program offerings in the last few years from summer camp to include a full complement of weekend clubs and after-school therapy and recreation activities, we started with the obvious: the kids we have served from the beginning.

We have added opportunities for parents to get together and talk about what is important to them, and what weighs on them -- things that only other parents of children with disabilities can fully understand.

But, it quickly becomes obvious that someone is being left out: the siblings of kids and young adults with disabilities. These typically developing children need love and support in ways that can be easy to overlook.

Thats where Sibshops come in.

Sibshops are a special curriculum of workshops designed by the Sibling Support Project, a nonprofit organization dedicated to supporting the siblings of people with disabilities.

“We believe that disabilities, illness, and mental health issues affect the lives of all family members,” the website for the project reads. “Consequently, we want to increase the peer support and information opportunities for brothers and sisters of people with special needs and increase parents’ and providers’ understanding of sibling issues.”

Gayle Smotherman, an Americorps member on the ESP staff, recently became fully certified to lead Sibshops. Gayle helps lead a once-monthly Sibshop at ESP.

The Sibshops curriculum book describes them this way:

Sibshops are lively and engaging celebrations of the wonderful contributions of typically developing siblings. Brothers and sisters will be in the lives of family members with special needs longer than anyone, so careful attention should be payed to the development of a lasting and constructive relationship.

It can be easy to feel embarrassment over a sibling’s disability, especially among kids who are old enough to understand that their sibling is different, but too young to fully recognize that certain behaviors are out of their special-needs sibling’s control.

It’s also not uncommon for kids to feel resentment over the special attention received by a sibling with special needs.

Gayle emphasizes that Sibshops are not therapy.

“But,” she says, “it’s a way for siblings to relate to one another in a recreational setting. If all we did was ‘play,’ but a sibling leaves feeling like they aren’t alone or they can appreciate something about themselves or their sibling with special needs, then I’ve done my job.”

At Sibshops, kids play games together. They talk about things they are good at doing, but their siblings aren’t. That talk about things their siblings can do, but they can’t.

For Beth Ferland, the mother of two children -- one with special needs and one who is typically developing -- the chance to get her 5-year-old son some exposure to why his sister is different has been valuable.

Thomas was excited for the first Sibshop simply because he knew there was a cooking project, Beth says.

“The way straight to his heart is through his stomach,” she laughs.

For Thomas, something else has been going on that happens with many siblings. He sees his sister Magen, who is 8 and in a wheelchair, going to ESP and having a lot of fun. It’s not uncommon for siblings like Thomas to ask why they don’t get to go to ESP.

Now, there’s a spot there just for them.

“I want Thomas to feel like he can have somebody that he can go to,” Beth says. “They’re in a unique position where a lot of brother-sisters, sister-sisters don’t have to worry about. Having a sibling with special needs is just a totally different relationship.”

Thomas is just old enough to recognize that Magen is different -- that he can do certain things, but Magen can’t. However, he is only starting to comprehend what those differences will mean for Magen.

Magen has a rare chromosomal deletion and Guillian-Barre Syndrome. As Thomas grows and becomes more independent, Magen will continue to rely on the people around her to help meet her most basic needs.

Beth isn’t sure how conscious Thomas is of his sister’s differences, but it’s enough for him to understand already that he plays an important role in protecting his sister.

“He’s very close to his sister,” she says. “He wants to be a cop so if any bad guys hurt his sister, he can shoot them.”

And it seems that Thomas is already playing a role that Sibshops tries to engrain and nurture in the siblings of kids with disabilities. It is part of the that many siblings will need to assume, particularly later in life after a parent becomes unable to devote the same level of care because of illness, their own disability, or death.

“With her therapy, he’s there for her and he tries to encourage her,” Beth says. “Sometimes, he can get her to do things that her therapists or I can’t.”

To learn more about Sibshops or how to enroll a child, call ESP at 706-769-9333.