Whether it is a sibling, child, or any loved one with developmental disabilities, caregivers know that the relationship brings lifelong responsibility.
Yet family members and professional caregivers who work with developmental disabilities said in recent interviews that they are seeing more acceptance and opportunity for those dealing with developmental disabilities.
“It’s really in these relationships that people can grow and achieve their potential,” said Caroline McGraw, a columnist for Autism After 16, consultant for L’Arche and sister to a young man with autism. “We all need each other and all have areas where we need support.” L’Arche is a non-profit organization that provides residential caregiving services to adults with developmental and intellectual disabilities.
Ms. McGraw said that her younger brother appeared normal until age 2 when he began to withdraw and was diagnosed with autism. Autism is a developmental disorder that typically appears in the first three years of life and affects social and communication skills. She said that in his teen years her brother became violent, but remains articulate enough to share his needs to calm down or stay on a routine.
Ms. McGraw’s brother lives in another state and is cared for by his parents, so her love and support is mostly remote. She and her husband have agreed to become her brother’s caregivers when her parents are unable to be.
“One way in which I support Willie is by telling his story to the world,” Ms. McGraw said. “Autism After 16 is geared toward people who love someone with an intellectual disability and are in a relationship providing support. Though it can be very challenging and transformative, we find meaning in our most challenging relationships.”
Developmental disabilities such as autism can cause severe physical or mental impairments that can slow learning, limit mobility, inhibit expression, and make the individual dependent on others for care and assistance. Without a caring and secure environment, those living with developmental disabilities are at an increased risk of compromised health and safety, and are subject to learning and developmental delays.
Lorraine Millan has a brother with developmental disabilities, a teenage son with autism, and she works with families who have children with social and emotional disabilities.
“She is on a mission to change the way we educate and parent our children,” said Ian Wismann, Ms. Millan’s husband. She has created an iPhone app called the Social Navigator that is designed as a behavior management device and a teaching tool that will reduce conflicts as they occur and train people to focus on problem solving and positive outcomes.
The app is geared toward children with social and behavioral disorders, such as Asperger’s syndrome and Attention Deficit Disorder. “This app provides guided reference in the moment,” said Ms. Millan.
Ms. Millan understands all too well the pressure parents feel when they have a child with developmental disabilities. “Parents feel very overwhelmed and they want to see a positive change in their children,” she said. “It’s not simply a matter of their parenting methods. It becomes difficult for them to bring a child with disabilities to another home without feeling judged.” This all leads to isolation for the parents and then an inability to get respite care.
When asked how she is supported as the parent of a child with significant disabilities, Ms. Millan was silent and then laughed. “In all honesty, the only support I receive is from one sister-in-law I am close with,” she said. “She is a Godsend. She is in the same field of work and someone we trust to care for my son. Outside of that, there are very few family members able to assist and help.”
Certainly innovations are needed and welcome in the care of those with developmental disabilities, but ultimately it comes down to people supporting one another.