From the minute they’re born, you do everything for your child. You feed them, bathe them, clothe them, talk to their doctors and teachers for them and so much more. Yet one of the most important things we do as parents is to help our children, step by step, learn to do as many of these things by themselves as they can.
Parents can help their child build independence and self-determination at any age. This page includes some stories and words of encouragement parents shared with us along with tips from parents and other experts.
This process might be different for your child with a disability or special health care needs – and for you. It might not be easy for them to learn skills they need to manage their own life. Your child might need extra help taking care of themselves, even when they have made the transition to adulthood.
It can be hard for you to know when to let them do things for themselves. Sometimes it’s more work to let them do small things like tying their own shoes or picking up their toys. And when they get older, they have bigger things to do, like managing doctor’s appointments or asking for special education services. You might worry that a decision they make could really hurt them. And, as with any child, they might start making decisions you don’t agree with.
It’s not always easy to let go. But self-determination (the freedom to decide what you want out of your life and knowing how to get it) is an important part of your child enjoying a life they pick for themselves. With your help, they can build the skills they need to be a more independent and responsible adult.
“Don’t ask, ‘Can my child do ___?’ or ‘Can my child participate?’ Instead, ask, ‘What supports make my child’s participation possible?” Anyone can be successful with the right supports.”
“We learned to follow my son’s lead. When he decided he wanted to do something, we worked to make it possible. It sometimes took a team to get him there, but he set the goals.”
What does your child need to learn to manage their adult life? There are different skills that they can learn through practice. Some of these are:
Learning these skills is a step-by-step process that happens over years. Even when your child isn’t ready to do all of these on their own, you can help them learn to do more.
Here are some ideas:
Also, see our Voice and Choice blog article on self-determination or our page on Making Adult Decisions.
“My daughter has had a tracheostomy since infancy, a history of seizures, and as-yet undiagnosed genetic condition.…We have created our own multi-year occupational therapy program for my daughter, currently 8 years old, such that she can build trach care skills which will allow her more independence, building up from [awareness to being able to perform her own routine or emergency care]. The goal most important to my daughter currently is to improve our processes for protecting her trach while swimming.…We are also always on the lookout for wearable technology which allows for remote vitals monitoring and/or emergency alert capabilities to increase her independence while maintaining an effective safety plan.”
Self-advocacy is one of the most important parts of self-determination. It is knowing what you need and how to ask other people to help you get it. Children who don’t know what they need or who are nonverbal might have a hard time with this.
But there are ways to help your child build self-advocacy skills:
See our articles on Living a Meaningful Life and Health Care Transition for more tips
“My son had started attending ARDs when he was in high school. We had one where the school was rejecting the idea of him taking a Geometry class. I finally said, ‘Let’s ask him how he feels about it!’ He made me so proud when he responded, ‘I’d at least like to try.’ He passed the class! It took a lot of work and a tutor, but he did it.”
It can be hard for children with disabilities or special health care needs to build all of these skills. Here are some barriers to consider:
Here are a few suggestions for overcoming these barriers:
Sometimes, it takes extra time and care for you to help your child build the skills they need for self-determination. Each time they practice, your child gets closer and closer to enjoying a life that they have chosen for themselves.
"Real meaningful life requires a degree of risk. Even for those with a disability.”
“When you explore your child’s dreams, you might stumble upon a way to help them achieve them. Maybe a child who wants to be a model can find a way to work in fashion by helping people find clothes that make them look fashionable. Maybe a youth who wants to design video games can become a video game tester. And maybe a kid who keeps saying he wants to raise goats should be given that chance – get a goat! If we can put a man on the moon, we can resolve the issues that stand in our kid’s way to their dreams!”
Here are some helpful resources we’ve found about self-determination: