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Raising a Child with Spina Bifida: From Parents Of Teens With Disabilities

My name is Jennifer Spicer, and I am the single mother of two of the most wonderful girls: Ashley is 14 years old, and Samantha is nine years old. Ashley was born with a bump on her back, and she was sent to Rainbow Babies and Children’s Hospital in Cleveland, Ohio.

When the doctors told us that she had spina bifida, I had no idea how our lives were about to change. She had to have her first of many major surgeries when she was only one week old.

Because of the spina bifida, Ashley is paralyzed from the waist down. She is in a wheelchair and faces many daily challenges: having enough room to get into the bathroom, taking a shower, brushing her teeth, or going to a friend’s house that only has stairs. Most people don’t realize the things that people in wheelchairs have to face. Some restaurants, stores, and other places have stairs or not enough room in the aisles. We have to think about these things before making any plans.

When we move, finding a place that will accommodate Ashley’s wheelchair and special needs is always a challenge.

Transportation can be a problem; Ashley needs a ramp, so she cannot just go with another family member or in a friend’s car. She has to go to many doctor’s appointments and have many medical tests.

Despite all of this, I have to say, Ashley is a wonderful teen. As a mother of a child with spina bifida, my heart breaks to see her suffering. But, I know Ashley, and I know that she will overcome it all. All Ashley wants is to be treated like every other 14-year-old girl.

I just ask that when you see people of any age in a wheelchair, please take the time to look them in the face. The person is what is important, not the wheelchair. If you run across a disabled person who is struggling and needs help, like reaching something on a store shelf, please think of how you would like your loved one to be treated if they were the disabled person and help them.

Read the daughter's perspective here:

I thank God everyday for my daughters. They are a true blessing to me.

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