Dear Patti,

My name is Sarah. My twin brother Jesse and I are 17 and have a younger sister, Brianna, who is 15 and mildly retarded. We all live with our mom, who has always taken care of us. Our parents divorced a long time ago; none of us remember our father.
It’s not as bad as you’d think having a mentally challenged sister. She’s very sweet and always wants to be like Jesse and me. She has hardly any friends and rarely goes anywhere but school if we don’t take her. She gets frustrated and sad when she’s not allowed to do things we get to do. My brother and I think mom is overprotective.

In our opinion she’s too worried about Brianna becoming a victim of sexual abuse. She won’t let her go on the bus alone or even ride her bike off our street without supervision. About three months ago, Brianna was allowed to walk alone to my mom’s work, about a mile and a half from our home, and got lost. A nice couple helped her and everything was fine but ever since my mother has become even stricter.

Jesse and I will be going to college soon and we may not be around to take Brianna places like we do now. I love her a lot and want her to be happy. How can we convince our mom to treat her more normally?
— Sarah

Dear Sarah,

Raising a child diagnosed with mental retardation can be an overwhelming task for any family, but especially a household headed by a single mom. My hat is off to all of you for sticking together and giving Brianna so much love and support.

While your mother may be overly protective, don’t be too quick to discount her point of view. It’s now widely recognized and documented in child abuse literature that those with mental retardation are particularly vulnerable and at increased risk for physical, sexual and emotional abuse. Their strong desire to be “normal” — along with a need to please others — may predispose them to tolerate maltreatment. This may make them reluctant to report painful and or abusive situations, especially if their abuser is an authority figure, such as a parent, teacher, caseworker, pastor or other individual who’s well respected by family members, neighbors and co-workers.

Social isolation, communication/cognition problems and a small peer group combine to put mentally retarded individuals at high risk for exploitation. In addition, the mentally disabled are often called names like “retard” and “dummy,” and told they’re “stupid and can’t do anything right.” These hurtful labels make them afraid to be around people.

I understand your desire for Brianna to be able to live as full and rewarding a life as possible. Since people with mental retardation have varying degrees of impairment, it’s important that her support needs be assessed. All special needs children in the US receive an Individual Education Plan (IEP) developed collaboratively by school staff and social services, which outlines specific goals and objectives designed around their needs and strengths, ability to communicate, take care of their personal health/safety, make decisions, and engage in leisure, social, school and work activities.

In addition to consulting with Brianna’s teachers and doctors, you might attend family sessions with a clinical social worker who works with the mentally disabled and explore the issues that concern you. For instance, is your mother’s anxiety keeping Brianna from reaching her full potential? Are you and Jesse having trouble facing your own emotional reactions to Brianna’s constant struggles with a chronic, lifelong condition?

It may also help to attend family support groups with others who face the challenges of caring for a mentally retarded loved one. The Arc is (www.thearc.org) a network that oversees the Sibling Support Project for brothers and sisters in circumstances like yours.

While it may not be wise for Brianna to be left unsupervised too often, it sounds like she needs to develop more friendships and a stronger sense of community. Investigate existing resources such as school dances designed for the mentally disabled and volunteer to supervise. Ask Brianna who she’d like to be friends with and arrange monitored visits. Solicit assistance from her school to help Brianna develop a better social life.

There are no easy answers, but it’s heartening to hear she has so much love around her.