When parents raise a child with a disability, we rethink every milestone through the lenses of “What’s the maximum my child can achieve?” and “What kind of modifications will they need?” Together, we make it happen with support from healthcare providers, family, and other parents.
One thing my family has learned over the years is that traditional development milestones still apply to our son who lives with spina bifida. With modifications, we turn these passive observations into proactive opportunities.
Ultimately, our goal as parents is to work ourselves out of a job. Let’s talk about ways you can reframe your approach to building skills your child needs at every stage of life.
Age 5 and younger
During the early years, give your child the opportunity to move on their own as much as possible. When a child is carried by a parent, it changes how the child’s brain perceives and processes all the sensory input from the world around them. Let them experience the world by engaging and moving through it, which might look like scooting, crawling, or taking breaks between steps.
In kindergarten, fine motor skills become increasingly important. Young kids with spina bifida often don’t have the dexterity to write clearly, so use modifications to help replicate that. Have them spell out the letters in their name with alphabet toys or ask them to trace their letters on the kitchen table or in the bubbles during bathtime.
Elementary school
Devise ways to make daily tasks into an adventure. Break down household chores into steps they can do independently:
- They may not be able to put away glasses on a high shelf, but they can move clean glasses and plates from the dishwasher to the counter.
- Maybe they can’t lift a heavy trash bag, but they might be able to transfer trash from the bin into small grocery bags then place them near the door.
- Make a game of putting on clean sheets by challenging your child to unfold and position a fitted sheet as they sit on the bed.
Giving young children with disabilities chores of their own can help reduce sibling resentment, and it’s an opportunity for them to become proficient at activities of daily living.
These are also key years for learning vital social skills and developing relationships with peers. Is your child getting the opportunity to interact with friends outside of school? Encourage meaningful connections with playdates, sleepovers, and frequent neighborhood get-togethers. Other parents may believe a child who uses a walker or wheelchair won’t be able to enter or get around their home. Reassure them that your child will be fine with a few modifications such as crawling up the front steps or scooting through the hallways.
Middle school and high school
The teen years are when we need to build on knowledge that “telescopes” to an independent lifestyle. At home, learning to prepare meals and manage laundry are usually near the top of the list. Participating in athletics or music will foster teamwork, social skills, and goal-setting.
This is the age when your child should start taking on more responsibility for their personal and healthcare needs. A middle-schooler can use apps on their smartphone to save all the details needed to fill out health forms and manage their doctor and therapist appointments. When your child is ready for self-cathing, be sure to talk through how to accomplish it safely not just during the school days, but also at events and on field trips as well.
Our family also learned that opportunities for job-related skills happen every day. Your child might be a great student, but submitting completed assignments on time could be a challenge. Together, you can brainstorm ways to achieve the follow-through needed. You might find an app that gives audible reminders to complete step-by-step tasks. Your student could print out copies or email a document to their study team to ensure it doesn’t get lost in the shuffle.
Skills and modifications like these can transfer to nearly any workplace, and they might come in handy for other members of the family as well.
Young adult and college years
Every driver should know how to change a flat tire, in case roadside assistance isn’t available. How can we make that happen for a new driver with limited mobility or dexterity? When my son was taking driver education classes, my husband and I sat with him in our garage to review what he could accomplish safely on his own. He learned what he could do independently, and he showed us that he knew what steps to take if something happens—and when to ask for help.
By the time your child is ready to live on their own, the skills they’ve acquired will give them the confidence they need to navigate the wider world as they live with their disability. Letting go can be difficult for any parent, but it’s a joy to watch them become who they were meant to be.
Your goal as a parent is to develop an emotionally stable, well-adjusted, adult who functions to their maximum independence. When you do, you’ll see that all your painstaking work was worth it.
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Disclaimer: This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. For medical advice, please speak with your healthcare provider.
