Lisa Freitag ’76
Growing up with a brother with special needs, I knew he was different and that this difference brought us curious stares from strangers. He had been diagnosed at age 2 as “mentally retarded” by specialists in neurology. My parents were told that he would never walk or talk, but they did not place him in an institution as was the usual recommendation in the early 1960s. Instead, they made a family project out of proving the doctors wrong. By the time he was 7 and I was 11, my brother had said his first words and taken his first steps. We were enormously proud of his accomplishments.

My brother’s care took up most of my mother’s time, even after he no longer needed to be fed and changed. Family outings were adapted to his needs, delayed as we waited for him to get ready or cut short when he tired.

Conversations ceased if he spoke any words, though he never had much to say. But leaving him behind or not listening to him wasn’t an option. Like many older siblings, I viewed my brother as being slow, boring and often in the way. But he was my brother, no matter how much extra time he needed.

Lisa Freitag illustration by Joel Kimmel
Illustration: Joel Kimmel
By the time I was aware of my brother’s limitations, my parents had begun spending evenings at meetings where, along with others, they fought for the right to an education for their children with disabilities. We now call this advocacy — an admirable activity — but to us then it was just doing the next task necessary to meet my brother’s needs. Parents at those meetings knew that many people believed children with disabilities didn’t need or deserve an education, so they were reluctant to mention how time-consuming it was to care for them.

Parents of children with special health-care needs are often reluctant to admit just how difficult it can be to care for their children. Since our society places such a high value on certain types of independence, parents who admit to having trouble juggling a child’s multiple needs at home are often viewed negatively. Hiding the challenges involved in caring for a child with disabilities merely ensures that the people doing this important and necessary work go unsupported.

The advocacy work started by my parents and their friends is not yet done. As a pediatrician, I can attest that the volume of caregiving work children with special needs require has not decreased with medical advances. I have met parents whose children still need to be fed, dressed and diapered into their teenage years. Many must see multiple specialists and therapists monthly, if not weekly. There is still very little help for parents who are overburdened caregivers, so they must, like my parents, organize their lives around their child’s needs.

To highlight the often-difficult care work being done by the parents of children with multiple needs, I have written the book Extreme Caregiving — my term for this complex combination of medical caregiving, parenting and advocacy that often leaves families feeling exhausted and lonely. This work is not being done by specialists selected and trained for the job but by ordinary parents whose children have extreme needs. These parents speak out for their children but rarely for themselves.

My brother, at age 58, still requires a lot of care. Though it’s not as much as he used to need, he will never be able to live independently. In uncharitable moments, I can resent this fact, but it doesn’t change him or make him any less my brother. He is just a person, like the rest of us. It is time to disconnect the level of care he needs from his value as a person and to recognize the tremendous work being done by the people who care for children with special needs.