Parents of children with special needs constantly research the best options for their child, make decisions and speak up for their child’s needs, but when and how should these parents teach their children to advocate for themselves?
Support self-expression
“Start as early as possible,” says Lori Severino, EdD, assistant clinical professor and program director of special education at Drexel University in Philadelphia. “Expressing needs is the beginning of self-advocacy. Even children who are nonverbal can be given choices and ways to indicate their choices via pictures or technology.”
Kelly Milazzo, a mom from Greenwich Township, NJ, has a 19- year old son, Will, who has autism. He is now in his second semester of college. Milazzo says supporting Will’s interests and letting him make choices at a young age helped him succeed in school and pursue his passion of playing on an ice hockey team.
“For students with developmental disabilities, so often the focus is on ‘Did they behave?’ That’s important, but the down- side is that they are never taught that they can say no,” says Milazzo.
Being able to refuse is especially important when people with special needs advocate for their own health and safety.
Angie Miller, vice president of Delaware Families for Hands and Voices says her organization, which provides support for families with children who are deaf and hard-of-hearing, works with a group called KidPower to provide workshops that teach children how to say no in dangerous situations and ask an adult for help if they’re in trouble.
Emphasize strengths
When they understand their diagnoses, children are better equipped to state their needs and know the strengths that will help them achieve their goals.
Brian Freedman, PhD, associate director of the University of Delaware’s Center for Disabilities Studies, says, “Make sure not only to talk about the challenges of that diagnosis but also to celebrate the positive aspects of it, such as expertise in a certain area.”
Renee Rideout, a mom from Horsham, PA, says she taught her son, Zachary, who has dyslexia, about the accomplishments of famous individuals with dyslexia. Rideout says of her 12-year-old son, “He now knows how to articulate what dyslexia is. He understands it’s not intelligence related but that his brain processes information differently.”
It’s also important to educate children in age-appropriate steps about their specific needs. For instance, Dr. Freedman suggests that parents teach children who need medication the names and dosages of their medications. Children with a physical disability should learn the proper use of any devices they need.
“The goal over time would be for the child to manage these tools independently before she reaches adulthood,” explains Dr. Freedman.
Model self-advocacy
Miller says, “Kids learn advocacy the same way they learn anything else, by watching what we do as parents. When they grow up watching their parents actively engaged in learning and evaluating available resources, partnering with their doctors and teachers and assertively defend- ing their rights, they learn what good advocacy should be.”
Dr. Freedman suggests, “Parents can point out the steps they’re taking to support their child so the child will know what to request when he’s older.”
Prepare and practice
Milazzo says she and her son role-played potential self- advocacy situations ahead of time. Hazel Cole, parent consultant at the Parent Information Center of Delaware and mother of four children, including one with Down syndrome and autism and another with fine motor delays, says, “Parents can help their child write a script that introduces the child and her strengths and then talks about the dis- ability and accommodations she needs. Have your child practice this speech with adults she is familiar with, and then have her practice it at school.” Children who have trouble with verbal communication can write a letter to communicate their message and give it to the appropriate person.
Collaborate with the school
As children get older they can play a bigger role in their IEP meetings. Dr. Freedman says, “Younger children might just be in the room in the beginning of the meeting to introduce themselves to everybody and talk about what they like about school and what support is most helpful. They can become more involved in the meetings through adolescence.” He adds, “If a child has an IEP, self-advocacy goals should be built into it to ensure steps will be taken in school to work on these skills.”
Other accommodations can be made with the school to overcome challenges to self-advocacy. Carrie Melchisky, parent consultant at the Parent Information Center of Delaware and parent of two adult children — one with autism and one with ADHD — says, “Many children, especially in the middle- school years, are reluctant to advocate for themselves because they don’t want to be seen as different from their peers. Giving such a student subtle or non-verbal tools — a small card that can be passed to the teacher, a special hand signal, whatever system the child and the staff feel will be effective — to signal that they need to take extra time can help him ask for what he wants.”
Offer encouragement
“When a child makes an attempt at self-advocacy, support the attempt,” says Melchisky. Even when the child makes a mistake or things don’t go well, Melchisky says, “The focus needs to be on the attempt, not the outcome.” Praise your child’s efforts.
Dr. Severino notes, “The best thing we can do is be patient and let the children communicate.”
Susan S. Stopper is a frequent contributor to MetroKids.
