Parenting has been the most rewarding experience of my life. I have always known that having children is a privilege and a daunting responsibility. If you have children you know exactly what I’m talking about. I am guilty of only showing pictures of my kids in the matching outfits, smiling and looking angelic. When my three children were small finding time for a quick bath felt as rewarding as a Caribbean Vacation. Parenting is hard and exhausting even on a good day - that’s the truth! Parents of children with disabilities have all of the typical struggles, plus many additional obstacles and challenges. It’s important for parents of children with disabilities to create a large support network of friends and family. Caregiver burnout is real, but there are ways to take care of yourself while caring for a child with special needs.
Seeing the Beauty in Disability
Having a child with a disability has many challenge, but there are silver linings too. My mother’s older sister was born with an anoxic brain injury which resulted in severe cognitive deficits. Aunt Linda required special care and attention from a very young age and was never able to be without supervision. My Aunt’s disability taught me that families are capable of enormous amounts of love and selflessness. I observed their unending patience in caring for Linda. As a result, my Aunt always displayed so much love for her family. Linda’s disability put many things in perspective for our family. Trivial worries were put aside and there was always an extra layer of thankfulness for everything that went well in our lives. We all understood the fragility of life and the importance of love, selflessness, and patience. I think people that don’t know someone with a disability are missing out on important life lessons that can’t be learned any other way. Kathy Zonana wrote a beautiful essay about the all of the silver linings that come from having a person in your life who lives with a disability. Katy’s essay is titled Silver Linings
and was featured in Stanford Medicine, it’s well-worth the read.
The Struggles of having a Child with a Disability
In addition to special type of love that families who have kids with disabilities experience, there is no denying the challenges. Everything that you do for a child with a disability will require more time and preparation. There will be many additional responsibilities for each parent, which will result in stress that will impact the entire family system. Prolonged periods of extreme stress and chronic exhaustion can cause a permanent decrease in serotonin and dopamine. The longer these chemicals are decreased, the harder it is to return to normal functioning. A study in 2014 showed that parents of kids with special needs rate themselves as having poorer mental health, more symptoms of depression and more difficulty taking care of everyday tasks. Parents of children with disabilities experience:
Caring For the Caregiver
- Social Isolation: One parent often gives up a career outside the home to become a full time care giver. There is little time left for social gathering because of the additional care kids with disabilities require.
- Financial Pressure: The costs for home modifications, specialty and custom rehabilitation technology (CRT), and additional care givers adds up. In addition, many families choose to have one parent stay at home and they family is forced to give up a second income.
- Exhaustion: Maintaining a house, caring for children with disabilities requires long days and often sleepless nights. A lack of sleep can cause depression and family members become short tempered
- Marital Strain: Trying to find time to nurture a marriage while caring for a child with a disability can be almost impossible. The additional responsibilities can bring a family closer together or tear them apart.
I realize there have been thousands of articles written about the importance of self-care, but here is another reminder. You can only work and take care of other people for so long before you hit a wall of exhaustion and end up on the floor in a puddle of tears, or hospitalized. Caregivers who are physically and emotionally drained are not helpful to anyone. Here are several suggestions of ways for parents of kids with disabilities to take care of themselves.
Maria and Nico’s Story (Maria is Nico’s mother)
"I never expected to live an atypical life with a child who has multiple disabilities. However, I can honestly say I wasn’t scared - I grew up with a brother who has Down Syndrome, and I experienced the Special Needs world long before I had my son. One thing that I find beautiful about parenting a child with special needs is that it truly changes your perspective on life. We embrace so many little things and moments we may have overlooked living a typical life. There are so many things that are taken for granted by so many people on the daily - whereas, our life with our son reminds us take a time to really enjoy and appreciate the little things.
- Access information and services.
- Join a support group or organization created for your child’s particular disability.
- Educate yourself as much as you can about your child’s diagnosis.
- Become an advocate.
- Ask for help.
A we realized the needs our son would have, we made the decision to become a one income family for the first year and a half of his life. We decided I would become his primary caregiver, and this left my husband working a lot. My husband and I had very little time for eachother. However, one thing we did was accept was the offer of a home night nurse for two years. We would have date nights and reconnect through dinner and dancing every once in a while. I consider us lucky to have a true friendship in our marriage. We started dating years into knowing eachother, and building that friendship part of our marriage that definitely helped us get through some really hard and devastating times. We know where our strengths lie, and rely on each other to take over decisions and things that stress the other out.
One thing that I would like to encourage every mother to do - including myself - is to take care of you! I know that life is really busy, but finding something that brings you - not the mom in you, but YOU - joy will continue to give you spark in your life. For me, I struggled a lot with this in the beginning, and understandably there was a lot going on. But, finding something that brings your spark back is something that will make you stronger in the long run.
I would also encourage any parent out there parenting a child with special needs to find your community - whether it be online or in person. Connect with those that have navigated the world of medical needs longer than you - they are a wealth of knowledge! Above all, remember that your child is unique, regardless of a medical diagnosis, and always trust your instincts when it comes to their care."
Having a special needs child in your life is without a doubt difficult and exhausting, but the amount of love and connection that happens between a parent and child with a disability is magical. It is the definition of unconditional love. In order to live a happy and healthy life caregivers must create support system,and learn to ask for help when the responsibilities become too overwhelming. I know from having a disability myself that I often avoid asking for help! There will be times that people say no or let you down, but don’t stop asking, you will find those special people who will be there for you when you need it most.