Video: With a Little Help From My Friends
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.
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 (i.e., 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 skills they need to be a more independent and responsible adult.
What Are Self-Determination Skills?
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:
- Setting personal goals and making plans to reach them.
- Solving problems that might get in the way of meeting their goals.
- Making sure their day-to-day needs are taken care of.
- Advocating (speaking up) for themselves and their needs.
- Managing their emotions.
- Knowing how to make good decisions.
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:
- Let your child make choices every day. You can start small, like what color socks to wear or if they want an apple or an orange with their lunch. Practicing making any choice now helps them with the bigger choices later.
- Talk through important decisions both before and after your child makes them. Tell your child about the ways you make decisions, even if they sometimes turn out to be bad ones. Show them the steps that it takes to make a good decision.
- Help your child set goals that match their age and ability. Make multi-step plans to reach them. Goals might be something like picking up 1 toy during cleanup, greeting the checkout person at the grocery store, or even learning to drive.
- Have your child start taking over their own medical care, as they are able. For example, if your child takes medication, have them practice getting their prescription filled at the pharmacy. Show them what their insurance card looks like and what the number is. Have them start helping add to their care notebook.
- Work with your child to create checklists and visual schedules of what they need to do every day. This can help them learn more responsibility and independence.
- Let your child take small risks and have small failures. We don’t want them to do anything dangerous, but they can learn to recover and have room to grow.
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:
- With your support, they can learn a lot about their abilities and their disability. As they learn more about when they need help, it will be easier for them to ask for it.
- Ask your child to speak for themselves at the doctor’s office as they are able to. You might have them practice questions beforehand. You might ask them to work on making eye contact or greeting the doctor.
- Have them practice asking for help from siblings or friends. That’s a safe place to learn when and how to ask.
- Have them practice asking for help in other low-risk ways. For example, take them to the grocery store and have them ask for help finding things on the list.
- Help your child start talking with their teachers about their needs. Start bringing them to their Admissions, Review and Dismissal (ARD) or Section 504 meetings as early as the 5th grade.
Getting Past the Barriers
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:
- Physical disabilities or sensory issues keep some children from doing their own self-care.
- Setting goals or managing emotions are multi-step processes that might be harder for children with intellectual disabilities.
- A child who uses an assistive device to speak might have a harder time with self-advocacy.
- If children have people do many things for them when they are young, they don’t always know what they should try to do for themselves.
Here are a few suggestions for overcoming these barriers:
- See our page on assistive and adaptive technology and devices for ideas on how to use technology to help your child have more independence.
- If your child uses a communication device, you could help them program in questions before they go to an appointment at a doctor’s office or school.
- Work with your child’s school to build self-determination skills into their Individualized Education Program (IEP) if they have one.
- Work with a behavioral therapist to help you set up routines in your home. If your child has a diagnosis of autism, you might be able to get some of this from the school as part of their IEP.
- Include your child in choosing and managing their other caregivers, if they need them. Maybe your child can help you put together training materials about their needs and routines.
- Start working on self-determination skills as early as you can.
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.
Here are some helpful resources we’ve found about self-determination: