Many moms and dads of children with special needs appear to parent with energy, balance and grace. They seem organized and remarkably stress-free. How do they pull it together when you’re just scrambling to get everyone ready for school and in the car? (Hint: years of trial and error.) Even if we as parents know these things, a gentle reminder is always in order.
First and foremost, become an expert about your children and their needs. You probably research continually and ask questions of their health-care providers, but being well-versed in the state and federal laws that regulate services for your children is a must. Knowing your child’s rights as an individual with special needs is essential for you to be able to advocate for them and get everything the government provides for children with their disability.
The tricky part about educating yourself is knowing where to start. Wrightslaw (wrightslaw.com) is a comprehensive collection of laws and news for special-needs advocates. To zero in on Texas services, bookmark Texas Project FIRST (texasprojectfirst.org), an offshoot of the Texas Education Agency that compiles resources for Texas parents, including state handbooks and training workshops.
Don’t Neglect Siblings
Work to ensure that your typical children actually have childhoods and don’t take on adult responsibilities. Like their parents, siblings of children with special needs are also coping and often need help in learning to deal with their brother or sister with special needs. Encouraging them to spend time with their friends is one way to help, but sending them for professional counseling is another great option.
Connect your typical children with kids they can relate to by joining Sibshop, a program created by the Seattle-based Sibling Support Project. Kids who have brothers and sisters with special needs meet regularly with kids in other families for a curriculum-based playtime with games and activities. For more info, visit siblingsupport.org.
Surround Yourself With Energy Givers
People are either energy zappers or energy givers. Being an effective parent means spending time in the company of people who make you feel confident, positive and happy, and less time with those who don’t. Birk describes energy zappers as those who leave you feeling exhausted. “Anyone who drains you, or compares his or her kids to yours and makes you feel bad or doubt yourself, is not someone you want to be around,” she says. Be good to yourself by weeding out the zappers.
Take Time for Yourself
Between all the therapist and doctor appointments, juggling becomes your way of life and leaves little time to do the things you want and like to do. Address yourself holistically by taking care of your physical, emotional and spiritual needs. Eat nutritious food, stay properly hydrated, schedule time for regular exercise – making sure you take care of all of you. Spending time with your significant other is essential too.
To carve out a few hours for yourself, take advantage of the local opportunities for respite care. Many church groups and nonprofit organizations host monthly respite programs, often for free, and childhood recreation centers host hourly drop-in programs exclusively for kids with special needs. Find programs near you by visiting the Thrive directory at dfwchild.com/thrive/respitecare.
Managing stress doesn’t come easily for most parents, so learning how to self-soothe is a must. “Moms need to figure out what works for them,” says parent coach Galit Birk, Ph.D. “For some it might be putting on music or going in the other room and doing deep breathing.” If music and deep breathing don’t do it for you, Birk suggests writing in a journal. “Try an appreciation or gratitude journal. Once a day, write down something that you’re grateful for.”
Join a Support Group
Support groups exist for a reason, to join forces and share your journey as a parent of a child with special needs. To find a local support group for families living with your child’s diagnosis, visit dfwchild.com/thrive/supportgroups and narrow your search by condition and/or county. Most groups meet once a month. Just knowing you’re not alone will grant you some much-needed peace of mind.
Additional reporting by the editorial staff.
Published February 2014