Parenting a Child with a Disability

When your child has a disability

Whether your child has a developmental issue, a physical disability, or a sensory impairment such as vision or hearing loss, their disability can have a significant impact on both of your lives. Studies show that parents of children with chronic physical problems, such as cerebral palsy or blindness, for example, experience higher stress than other parents.

Every parent worries about their children and how to provide the best for them in life. But when your child has a disability, these fears are often magnified. You may worry about how you’ll handle the practical aspects of caregiving. What will public outings be like? What about schooling? How will you balance looking after your child with other household and family responsibilities? How can you make your home safer or more accessible for your child?

Beyond the practical considerations, you’ll likely also face significant emotional challenges. You might fear that your child will never be able to live what is considered a “normal” life, or worry the physical challenges they face could limit their opportunities.

You may feel isolated if you’re unable to attend certain social events with your child, or enjoy certain physical activities, such as sports. You may even worry about the social stigma your child could face, or how other people may perceive them. Will your child be bullied by peers? Excluded or ignored?

It’s easy for these emotional and caregiving challenges to leave you feeling overwhelmed by stress and anxiety. But even when things seem overwhelming, know that there are ways to overcome these challenges, build a sense of resilience, and help your child to thrive in life.

Since every child is unique and every parenting journey different, the circumstances you’re dealing with may be very different from those facing other parents of children with disabilities. However, you there are lots of coping strategies you can tailor to suit your child’s specific needs. The path forward often involves identifying potential roadblocks, reaching out for support, and determining how best to adapt to each challenge.

Common challenges facing parents of children with disabilities

Raising a child with a disability can come with unique challenges, including the mental stress and physical exhaustion of family caregiving. Other obstacles can include:

Dealing with difficult emotions. You may feel guilty if you question whether you could’ve prevented your child’s disability. Anxiety and depression can set in if you see your child in pain or struggling with their condition. You may even feel angry or abandoned if you believe you’re not getting support from other family members. When it comes to disabling conditions that are expected to get progressively worse over time, you may experience anticipatory grief, grieving a loss before it occurs.

Maintaining other responsibilities. When caring for a child with a disability, it can be difficult to balance work, home, and caregiving responsibilities. You may be tempted to cut back on sleep, but that will only lead to a host of other issues, like fatigue, higher stress, and a weakened immune system. If you have other children, you may worry about ensuring their needs are also met—as well as your own self-care.

Managing your child’s medical care. Navigating the healthcare system can often be an overwhelming experience. If you’re raising a child with a disability, you’ll likely spend extra time researching treatment options and local resources. Then, of course, you’ll need to schedule and attend medical appointments, fitting all of this into your other daily responsibilities.

Advocating for your child. Whether in the classroom or at social events, you may need to speak up for your child or ask for accommodations. To do this, you’ll not only need to educate yourself on your child’s disability, but also communicate effectively to others. It’s possible that you’ll have to deal with judgments from other people who don’t understand your child’s condition. From occasional stares from strangers to insults from playground bullies, it can feel as if you have to defend your child from the world.

Accepting your child’s diagnosis

A life-changing diagnosis can hit hard and trigger feelings of grief and loss. It’s normal to mourn a change in your child’s physical health, or grieve the loss of future plans and opportunities.

Patience is important. Don’t rush the grieving process or feel like your emotions need to follow a timeline. Some days you might feel anger and sadness, others denial. Childhood landmarks, such as the first day of school, can often be emotionally difficult times as well. Go easy on yourself and know that coping with difficult and negative feelings can be an ongoing challenge.

Know that your child can still live a happy, meaningful life. If you need evidence of this, look up stories of people who have similar disabilities. You’ll find that people often find ways to adapt to their condition, overcome challenges, and thrive in life. Believe that your child can do the same with the right guidance and support.

[Read: Coping with a Life-Threatening Illness or Serious Health Event]

Look ahead. Some people experience a sense of relief over their child’s diagnosis—especially if they’ve spent a lot of time trying to understand the cause of their symptoms. Having a diagnosis now gives you an opportunity to gather useful information and seek support.

Identify your child’s strengths and build on them. It’s easy to dwell on your child’s limitations. But don’t forget that, just like any other child, they also have their strengths. Perhaps they have a mobility issue but excel at mathematics. Or maybe they’re hearing impaired but have many artistic talents. Encourage those skills, and ensure your child has opportunities to put their strengths to use.

Educating yourself about the disability

By learning as much as possible about your child’s disability or impairment, you can feel more confident in caring for them. You’ll also be able to better understand what your child is going through, and articulate their needs to others.

Talk to your pediatrician and seek recommendations. Your child’s doctor can be an excellent source of information, so don’t hesitate to ask them questions. Take things a step further and ask them for trustworthy books, websites, and other resources that can expand your knowledge.

Be a diligent fact-checker. It’s easier than ever to find information on specific disabilities and health conditions online. However, not everything you read is accurate. Develop a habit of cross-checking information with multiple sources and reviewing source credentials. Often, academic and government-run websites have credible information, as do specific organizations that relate to your child’s condition.

Recognize the benefits and limitations of online forums. Blogs and forums can give you insight into other people’s experiences. You might even find some helpful tips that you can incorporate into your own childcare routine. But again, don’t assume everything you read is true.

Know what works (and doesn’t work) for your child. What motivates your child? What tires them out? What triggers their stress or anxiety? What calms them down? Answering these types of questions can make it easier for you to predict difficult situations, make adjustments, and advocate for their needs.

Share your knowledge. Whenever you find a new resource or make a new discovery about your child, pass on that information to the rest of your family or other potential caregivers. School staff might also benefit from your findings. The more information they have, the better they’ll be at providing support to your child.

Explore support groups. You might be able to find support groups that focus on your child’s specific disability, or more general support groups for caregivers. These groups can make you feel a little less alone in your struggles, and can often be a source of practical coping tips.

Developing day-to-day coping tips

Part of caring for a child with a disability is knowing that even mundane daily activities can sometimes require a little extra thought or preparation.

Research and try out assistive technology. Assistive devices are tools that can make daily tasks easier for your child. They can include anything from wheelchairs and walkers for children with mobility issues to hearing aids and screen readers for those with impaired senses. Learning how to use specific assistive technology can often enhance your child’s quality of life.

Follow a schedule. Having predictable routines can make any child feel safe and secure, but is especially important for children with disabilities. Aim to feed, bathe, and play with your child at around the same time each day, whenever possible.

Plan outings. Consider how busy your destination may be at certain times of the day. Your child might feel overwhelmed if you need to navigate a noisy restaurant or crowded theme park at the busiest times, for example. In some cases, going at off-peak hours might ensure that staff can be more attentive to your child’s needs.

Always give yourself extra time. From inaccessible buildings to pain flare-ups, all sorts of factors can add delays to your plans. Giving yourself extra time can help avoid the stress of rushing and allow you to calmly deal with any unexpected obstacles.

Bring help if necessary. Depending on the nature of your child’s disability, it may help to have another adult or an older sibling with you. They can assist with any physical challenges, for example, such as helping your child up and down stairs.

Consider how you’ll handle rudeness. In some cases, you might decide to ignore intrusive comments or impolite stares from strangers. Or you may feel motivated to explain your child’s condition. Having a go-to plan in mind can help reduce your stress. For example, you could rehearse a simple explanation to share with strangers.

Dealing with behavioral issues

Disciplining a child with a disability can feel like a difficult task. When faced with outbursts or defiance, you might feel tempted to let them carry on because it simply “feels easier.” However, you can find many healthy ways to discipline your child—and they can learn and benefit from the boundaries you set.

Find ways to clearly communicate the rules. Depending on your child’s disability, you might need to use pictures, gestures, or other means of communication to convey your expectations.

Set predictable consequences. For example, being mean to a sibling might result in your child losing playtime. Consider using “if-then” language when explaining the consequences or giving the child a warning: “If you push your brother, then you’ll lose playtime.”

Be consistent. If you say that bullying will lead to a timeout, be sure to enforce that rule each time. This helps foster predictability. If you’re raising multiple children, you’ll want to use the same rules and consequences for each of them or be willing to explain why exceptions exist.

Offer lots of praise. Remember to use praise and rewards, such as extended play time, to encourage good behavior.

Manage your own stress and emotions. Research indicates that there’s a “transactional” connection between a parent’s stress levels and a child’s behavioral problems. This means that not only does bad behavior stress a parent out, but the parent’s elevated stress can worsen the child’s behavior. For instance, when you’re stressed, you might be less responsive to your child, and that could encourage your child to act out for attention.

Practicing self-care

When raising a child with a disability, it’s easy to forget about your own needs. However, self-care is a vital part of caregiving. You can’t effectively care for your child if you don’t care for yourself as well.

Make time for exercise. You don’t necessarily need to get a gym membership. Just spend a little time doing physical activities you enjoy, such as a walk around the park or a cycle ride. If you get creative, you can mix this in with quality time with your child. For example, they might enjoy regular walks or tossing a ball back and forth in the park. You can also explore exercises for people with limited mobility.

Get enough rest at night. Most adults need at least seven hours of quality sleep each night. This might be easier to accomplish if you set a regular bedtime for your child as well—and take time to relax before bed.

[Read: How to Sleep Better]

Eat a healthy diet. Some people are prone to emotional eating when they’re stressed. Make sure you have a kitchen stocked with nutritional food options for yourself as well as your child.

Maintain lines of support. Whether you open up to a friend, family member, or therapist, it’s important to share your feelings rather than keep frustrations bottled up. Caregiver support groups are another option when you’re looking for advice and understanding.

Keep up with activities you enjoy. Parenting can be all-consuming, and it’s easy to lose track of your own hobbies and interests. But making even just a little time for your favorite activities can help you unwind and avoid burnout.

What to do when you feel overwhelmed

The demands of caregiving for a child with a disability can be overwhelming. The prolonged and excessive stress can even lead to caregiver burnout, a state of emotional, mental, and physical exhaustion, where you feel disengaged, unmotivated, and helpless. But there are steps you can take to manage overwhelming stress and avoid burnout.

Several studies suggest that mindfulness practices are effective in reducing stress and improving well-being in parents of children with disabilities. Mindfulness involves tuning into your present experiences, whether they’re thoughts, emotions, or sensations, and adopting a nonjudgmental acceptance of what’s happening.

Slow down. Try to notice when you’re rushing through life. Maybe you’re trying to make breakfast, dress your child, and get out the door in ten minutes. When possible, fix your focus on one thing at a time rather than multitasking. This allows you to be calmer and more attentive, and avoid stressing yourself and your child

Try a guided meditation. Meditation can help you build mindfulness by drawing your attention to your thought patterns and physical experiences. Explore the following exercises to find one that’s most effective for you:

• Eye of the Storm Meditation.
• Body Scan Meditation.
• Mindful Breathing Meditation.
• Deep Breathing Meditation.

Practice self-compassion. Sometimes it may feel like you can’t quite seem to do things right. Maybe you forgot your child’s medication at home. Or perhaps you lost your temper while they were misbehaving. Even when you feel like you’re failing, remember to take a step back, acknowledge what’s going right, and give yourself credit for your efforts. Let go of the idea that you need to be a “perfect” parent or caregiver.

Balancing the needs of all your children

Depending on the severity of your child’s disability, they may require much more attention than your other children. This can lead to a tough balancing act. How do you tend to your child’s needs without neglecting other members of your family?

Offer honest explanations of their sibling’s disability. Rather than try to deny the existence of differences, be upfront about the situation. Depending on your children’s ages, you might have to use simple terms, such as: “Your sister’s eyesight isn’t as strong as yours.” For school-age children, you can explain the disability in more detailed terms. You can even use roleplay exercises to help your child explain their sibling’s disability to other people in a way that’s accurate and respectful.

Set aside time for one-on-one engagement. Even if one child requires extra attention, it’s important to find moments to give each of your other children your undivided attention. This quality time could involve one-on-one outings each week, or short walks together in the evening. Be as present as you can during these activities. For your child, it’s an opportunity to share their feelings, voice their needs, and feel connected with you.

Encourage open dialogue. Sometimes your other children may feel jealous or frustrated with the amount of special attention their sibling with a disability receives. One way to mitigate tension is to promote open communication. Give your children time to express any issues they have. Be an active listener who’s receptive to their concerns.

Expect the conversation topics to change over time. Younger children might need help working through jealousy. Older children might have concerns over responsibilities they have in the household, or when helping their sibling with a disability.

Seeking support for you and your child

When it comes to caring for a child with a disability, you may feel tempted to do everything on your own. But that approach can quickly lead to burnout. Knowing when and how to lean on others can significantly improve your sense of well-being, as well as your ability to care for your child.

Support doesn’t necessarily have to come from close family members. Help from outside of the family, such as from friends and professionals, can also reduce stress.

Evaluate caregiving tasks. Consider making a list of your typical caregiving responsibilities. Which ones are hard to manage alone or leave you feeling overwhelmed? Be realistic in your assessment and think about your physical and time limitations.

Recruit help for specific tasks. You may feel hesitant to ask for assistance from others, but friends and family members will likely be understanding and eager to help. Have a one-on-one conversation with the person and see if they have time and energy to lend you a hand. Be specific about your needs. For example, if you need someone to take your child to a medical appointment, give them the specific time, place, and any details they need to know about your child’s needs.

Ask for more general help. You can also mention general areas that you’re struggling in. Then, you and the other person can brainstorm ways they can best help you out. Maybe you have a friend who is good at research and is willing to identify local programs for you and your child.

Expand your search for support. If you’re religious, consider asking people in your place of worship for support. Caregiver organizations and organizations that focus specifically on your child’s disability can also be good resources. If you need temporary relief from your caregiving duties, you can look into in-home or out-of-home respite care options.

Stay educated on helpful policies and programs. Government policies regarding disabilities vary by country or state. Knowing more about your local policies can end up making life much easier for you and your child. In the U.S., for example, the Americans with Disabilities Act requires child care centers to make reasonable modifications and provide certain types of aids and services for children with disabilities.

Always keep in mind that while you’re the child’s parent and primary caregiver, you don’t have to handle everything alone. Recognizing your limits and leaning on others can make your parenting efforts even more effective, and strengthen the bond between you.

Last updated or reviewed on August 21, 2024