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 is different, the circumstances you’re dealing with may be very different from those facing other parents of children with disabilities. However, 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 grief, before your child's condition worsens.
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 with others. You may 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.
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 allows you 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 paediatrician and seek recommendations. Your child’s doctor can be an excellent source of information, so don’t hesitate to ask them questions. Take a note book to appointments, take notes, invaluable for reminding you after the appointment. Take a friend or family member as another pair of ears.
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 poor parking, 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 behavioural 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, or loss of screen time, 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 behaviour.
Manage your own stress and emotions. Research indicates that there's a “transactional” connection between a parent's stress levels and a child's behavioural problems. This means that not only does bad behaviour stress a parent out, but the parent's elevated stress can worsen the child's behaviour. 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.
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.
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 favourite activities can help you unwind and avoid burnout.
Above all else, remember that you are your child's parent, you are the expert on your child, you know them better than all the therapists and well-meaning people around you. Stick to your gut feelings in different situations, as there's a 99% chance you are right!
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