Support for Parents of Children With Disabilities

Accepting your child’s disability

Learning that your child has a disability can cause a variety of emotions and concerns. The severity of the disability and your own emotional resources and support system may also play a role.

It takes time to work through your emotions, so be kind to yourself and give yourself permission to feel your feelings. Eventually, you’ll become empowered from learning more about your child’s condition and having a support team of experts, family, and friends in place.

If you are overwhelmed or having trouble adjusting to the situation, consider seeing a mental health professional to help you process what you’re experiencing and discuss specific challenges and issues. Also, support groups for parents can help you feel less isolated and help you connect with parents in similar situations.

Dealing with stress

It’s easy to get overwhelmed when you have so many responsibilities on your plate. But you don’t have to do it all alone. Reaching out for help can make a big difference for you, your child, and your family life.

• Don’t hesitate to ask for help. Family, friends, and neighbors often want to support you but may not know what they can do. Think about what would make your life easier (cooking meals you can store in your freezer, mowing the lawn, running an errand, etc.) so you can tell people in your support system specific examples of how they can help.
• Get advice from a social worker. In addition to providing emotional support, social workers can direct you to resources and services to handle some of your responsibilities. They may also know about government benefits and sources of financial support you may not have found.
• See a therapist. A therapist can help you come up with strategies for managing stressors and finding ways to take care of yourself.
• Check if you qualify for home health care. Depending on your child’s condition, your benefits provider may pay for an in-home health aide or visiting nurse for a few hours each week.
• Consider respite care. Respite care—a short-term break for caregivers—is for when you’re overwhelmed and need a break. A social worker can help you find a provider who will care for your child in your home, at a daycare center, or in residential centers.

Finding time for yourself

Many parents struggle to make time for themselves, especially those raising a disabled child. You may even feel guilty for taking care of your own wants and needs instead of focusing solely on your child.

But neglecting your own well being can hurt both you and your child. If you are struggling with mental health issues, your child may suffer too, so there’s nothing selfish about looking after yourself.

Basic self care

Taking care of your basic needs is essential to staying healthy and being a good caregiver. It is not, as some parents may think, a luxury to focus on yourself. Basic self care includes making sure you get enough sleep (which includes healthy bedtime routines), eating balanced and regular meals, exercising, and bathing and wearing clean clothes.

Take regular breaks

Having someone shoulder some of your responsibilities gives you a chance to re-energize and get much-needed rest. Ask family, friends, or a paid caregiver for assistance. Just getting out of the house for at least a few hours each week can help prevent burnout.

Whatever it is, do something that you really enjoy, whether it be exercising, shopping, meeting up with friends, or reading a book.

Nurture your friendships

If scheduling a get-together with friends is challenging, be more casual, like inviting a friend over after your child has gone to sleep. Or, if you know you’ll have to wait at one of your child’s upcoming appointments, ask a friend if they can come with you. Even a phone or Zoom call can keep you connected with friends.

Maintain your hobbies and interests

It may seem impossible to keep up with your hobbies or your favorite activities, but it’s important to try to carve out even small chunks of time for them. If actually engaging in the hobby or interest seems too difficult, then try to make space for it in a different way, such as listening to a podcast or watching a video about it while in the waiting room. “Caregiver” can’t and shouldn’t be your only identity.

Sneak in physical activity

Exercise is a great way to focus on yourself, relieve stress, and recharge your energy. If you enjoy sports, make it part of your routine, like a weekly tennis game or regular bike ride. Or use the time, while walking, jogging, or in the gym, to listen to music, an audio book, or a podcast, or to talk to friends.

If even that seems too much, try to add in to your day 10-minute bouts of activity (walking, aerobics, etc.).

Practice relaxation techniques

Just a few minutes of deep breathing or meditation can be a soothing mini-escape. Downloading an app that guides you through these techniques, such as Calm or Headspace, is an easy way to get started.

Keeping a marriage healthy

Couples with disabled children face additional challenges, and it’s not unusual for a relationship to be affected. Unfortunately, the rate of divorce and marriage struggles can be higher among these parents compared to parents with nondisabled children, according to a study in the American Journal on Intellectual and Developmental Disabilities.

One common problem is finding time (and energy) to spend alone together. Communication with your partner can also suffer, since most of your conversations may be about your child, not your compatibility and partnership. Or one or both of you may retreat from other people, even your spouse.

Ways to strengthen your relationship include:

• Keep lines of communication open. When you’re both so busy and tired, it might be tempting to wait for a “good time” to talk. Try to not put off conversations or withdraw into yourself. It’s better to start talking—and making yourself available to your partner if he or she wants to talk—than letting issues build up.
• Set ground rules. As in any relationship, there will be times when you and your spouse disagree. Just be sure to “fight fair”: Agree that when you disagree, neither of you will bring up past mistakes or blame each other for your child’s difficulties.
• Find a caregiver you can trust. When you have a disabled child, you may worry that no one else can care for them as well as you can—making it hard to have date nights. If you haven’t found a trusted sitter, consider caregiver training. Local hospitals and social service agencies provide classes that teach friends and family members caregiving skills.
• Create routines. Carving out time for simple, everyday rituals you can do together, like sitting down to coffee or taking a walk after a meal, can give you a chance to connect as partners, not parents.
• Divide responsibilities. Tension can occur in a relationship if one of you feels like they’re doing most of the parenting tasks. With your spouse, write down a list of responsibilities—who takes your child to playdates, deals with the health insurance company, schedules doctor appointments, etc.—and discuss how best to divvy it up.
• Know when to get professional help. If you’re still struggling, consider marriage counseling.

Finding an advocate

Children with disabilities are entitled to certain services and accommodations at school, but ensuring they get them can be time-consuming, challenging, and stressful. To ease the burden, consider working with a special education advocate. These professionals are trained to help parents understand special education policies and practices, suggest improvements to the Individualized Education Program (IEP), and more. There are several ways to find an advocate for your child.

• Ask other parents with disabled children if they can recommend someone.
• Contact your state’s Parent Training and Information Center.
• Reach out to local chapters of advocacy organizations, your school district’s Special Education PTA, or the Council of Parent Attorneys and Advocates.

Getting support from other parents

When your child has disabilities, you may find it hard to relate to parents of nondisabled children, which can be frustrating and isolating. This is where connecting with other parents of disabled children can make a difference.

Talking to people who share your emotional experiences and understand what your day-to-day life is like can help you feel less alone, increase feelings of community, and provide an opportunity to share advice and information.

Join a local or online support group

• One of your child’s providers or your local hospital may be able to refer you to support groups for parents who have children with disabilities and groups more focused on your child’s particular disability.
• Many parents have created their own communities on Facebook
• Advocacy organizations devoted to your child’s particular disabilities often host online community groups.
• There are also websites focused on creating digital communities for people with disabilities and illnesses and their loved ones.

Have someone else make introductions

The website Parent to Parents USA (p2pusa.org) will match you to a “support parent” who has a child with the same disability.

Take part in larger programs

Joining organizations that offer recreation and other activities to children with disabilities, such as Special Olympics and Easter Seals, provides a great opportunity to meet other parents who understand and relate to your experiences.

Connect through your child’s school system

Some school districts set up groups for parents who have disabled children. While the focus is usually for the parents to advocate for your child within the school system, it can be a good way to meet others in similar situations.