Raising a child isn’t easy, and raising a child with extra requirements can feel like an act of superhuman strength. But you aren’t the only one, and you aren’t alone. Here is a little information about raising a child with Spina Bifida.
What is Spina Bifida?
Spina bifida is a congenital neural tube defect. The neural tube is the embryonic structure that closes off and becomes the brain, spinal cord, and meninges (protective tissue). When it fails to close completely, these neural elements may create a bulging sac on the child’s back, leaving the delicate anatomical structures open to infection and interfering with neural function because of exposure and abnormalities. The different types of spina bifida (occulta, closed neural tube defect, meningocele, and myelomeningocele) range in extremity from virtually asymptomatic to causing seizures and paralysis. The cause of spina bifida, however, is still a mystery.
Spina Bifida in Infancy
It can be devastating to learn your unborn baby has Spina Bifida, especially since cases detected before birth are often the more serious types. It’s important to start preparing before your child is even born. Keep a list of question to speak with your doctor about. Finding a support group for you, your spouse, and other immediate family members who will be playing an active role in your baby’s life can be a lifesaver; these groups are great places for advice, information, and an extra shoulder.
Do your research, and be prepared for potential complications at birth (like hydrocephalus, or water on the brain). If Spina Bifida interferes with your baby’s movement, discover alternative means of getting activity into your infant’s daily routine. Get informed about additional health issues your baby may be more susceptible to, like sores and blisters that may develop on the skin.
Early Childhood
Spina bifida doesn’t have to interfere with your baby developing into a happy, independent child. Encourage the natural sense of curiosity in your baby, and help him or her learn alternate ways of attempting normal milestones—even if it takes a little longer than normal. If your child has issues with movement, work with doctors and physical therapists to teach your child how to move with assistance (whether this means crutches or a wheelchair). Encourage sociability; strong friendships can help diminish the sense of isolation that comes when living with a disability.
Navigating Your Child’s Education
Public school may not be for every child. If you choose to homeschool your child, make sure to seek out groups that allow both of you the means to interact with other families. Continue to encourage independence as your child grows so they will have the opportunity to become a healthy, contributing adult. Even if your child does leave the home for school, it’s important to discuss ways to help your child navigate learning disabilities through home activities. Most schools offer special needs education classes including Individualized Education Plans (IEPs), in which you work with school staff to create for your child. For children who do not qualify for an IEP, a 504 Plan can ensure your child’s school helps meet their needs.
Adolescence and Young Adulthood
As your child grows older, encourage them, to take an active role in their own life. This might mean making their own doctor’s appointments, scheduling their own physical activities, arranging their own transportation, or taking on other responsibilities to ensure they can take care of theirself as an adult. It’s important to remember that although your teen may have special needs, they will likely have the same wants and needs as any other teen. This means educating them about sexual safety, forming goals, and perhaps even applying to colleges. As your responsibilities decrease, theirs will increase. Helping them with this transition might be the most important part of your duty as a parent.
