By Megan McQueen
As a mother who has some physical limitations, I have glimpses into the world of living with a disability. I was told when my youngest child was a baby that the constant pain I was in would continue to worsen and I would be in a wheelchair in about ten years. I began to consider the accessibility of our home and adaptations my life would require with added equipment and decreased mobility.
We all live within a wide range of abilities. Abilities can be neurodiverse, cognitive, physical, and invisible. Your specific life experience is based upon who you are through your adventures, your thoughts, and your genes. The broad suggestions I offer below may be helpful. As you are aware, only you will know when the answer fits your specific questions. Your individual situation and family life will guide your needs so you can best meet your own or your family’s challenges.
You have value and you belong. People of all shapes, colors, and abilities belong in our society. Join a parenting class, visit your child’s school events, sign up for a mom’s group. You are welcome there. Give yourself a pep talk and jump in!
Seek out a network of people who understand. Any given group may or may not be in your exact situation, but if they share similar experiences, they may be able to empathize and offer support. Try an online search of your specific condition and branch out to seek local, personal connections as well. Friends can offer suggestions regarding resources for parenting recommendations and positive adaptations.
Frame your situation as strength-based. Will you have challenges? Yes. Use these as opportunities for your children to learn patience, understanding, and an inclusive-based look at the world. You will tap into your creativity to design the life you require. You will have a strong system of friends and family who will support your journey. Solid personal connections are one of the best indicators of health and resiliency.
Hire out help you need. Look into your medical insurance or social security benefits to see if there is coverage for home-based help with parenting needs or a service animal to assist you. Lean on your parents with a disability group (see above) to help research supports or trade each other services you can offer. A baby-sitting trade can be invaluable when attending medical appointments, for example.
Lean on Early Intervention Services. Many opportunities exist for children with disabled parents in the early intervention (EI) suite of services. Ask your pediatrician about offerings through EI and head start preschool programs.
Be a “good-enough” parent. There is so much pressure to be a perfect parent! All parents need to take a step away from the pressure of unrealistic expectations. Release yourself from the negative-cycle and enjoy your time with your family! Focus on the positive aspects of your life together and have fun. Create moments of joy and play together. Your life will not be “perfect” – no one’s is. Accept that and feel comfortable with the idea of “good-enough.” That doesn’t mean you won’t strive to learn and grow as a parent, but that you also see the value you bring to any moment. Easing up on the pressure will benefit everyone in your home.
Be creative! Oftentimes, you may need to adapt something to make it more accessible for you. Cut the legs off a crib and put it on risers to make the crib the best height for you. Use a handheld shower head instead of leaning over the side of the bathtub as you would otherwise. Keep supplies organized and within reach. There are small carts on wheels that can be handy in each room. Pull them out when needed and tuck them out of the way when you’re finished with your supplies. Have craft supplies and healthy snacks for your children within their reach, so that you can rest when you need to and your children can have some of their needs met.
Talk openly with your child about your disability. Share how living differently brings you strength and an appreciation of others. You have gained much by learning to listen to your body. Talk with your children about how there are a variety of ways to live and that our diversity makes all of our lives richer. Acknowledge the struggles you (and your children) encounter because of your condition and use that to empathize with others’ experiences. Brainstorm ideas to be more inclusive at school and in your community. By fully embracing all parts of yourself, you will model important lessons for radical self-love that will bring more satisfaction to your life.
You can love and care for your children just as anyone else can. Create a joyful home full of snuggles and love for your family. Reach out for support when you need it (everyone does!) to figure out the details.
In my own life, I have gained appreciation for people navigating a disability through learning from mine. My experiences have taught me to be grateful for all that I have been able to do and recognize that it may change. It is not always easy, but I know my children have gained compassion with their opportunities to help me. Caring for others and receiving care are some of the most tender ways to live fully. My journey may not be a “typical” one, but it is valuable and a rich source of kindness for my family.
- The Disabled Woman’s Guide to Pregnancy and Childbirth by Judith Rogers
- Don’t Call Me Inspirational by Harilyn Rousso
- Helping Couples and Families Navigate Illness and Disability: An Integrated Approach by John Rolland, MD
- Mother Father Deaf by Paul M. Preston
- So B. It by Sarah Weeks
- The Subtle Knife by Philip Pullman The main character has a mother with a mental illness.
- Accessible Construction
- Disabled Parenting Project
- How to Use Your Smartphone to Improve Life – Video with tips to organize your life with your phone
- Information Sheets such as Adaptive Parenting Strategies
- Mental Health Parenting – Parenting with a mental illness
- Oregon Family Support Network
- Parenting in Pictures – Pictures that offer parenting tips for daily living and safety tips
- Pearl Buck Center – Supports children and adults with intellectual and developmental disabilities
- Supporting Parents with Disabilities – This compilation contains multitudes of resources for parents.
- Webinar Recordings about Disabled Parenting
We have also created a downloadable PDF of a tip sheet.
Megan McQueen is a warmhearted teacher, coach, consultant, and writer. She grounds her work in empathetic education, importing a strong sense of community and social skills to those with which she works. Megan prioritizes emotional learning and problem solving skills. When not at work, she is most likely playing with her husband, two children, and pup.