The term “special needs child” is commonplace these days. It’s likely we all know someone who has a child with special needs. It’s understood that parenting a child with special needs is a huge undertaking and a labor of extreme love—the thought of parenting more than one of these unique children at the same time, however, is mind-boggling.
Recently, I met Anne*—a wonderfully upbeat woman who has three children—all of whom have “special needs.” As if coping with her children’s difficulties was not enough, Anne was homebound for 15 years due to a debilitating illness, which is now under control. To say I was inspired by her story would be a vast understatement.
When Anne’s first child, Grace, was two years old she was put on medication for hyperactivity. At age five she became psychotic: having hallucinations—seeing, hearing and smelling things that weren’t actually there, which often made her physically ill. She also suffered with extreme anxiety. As a little girl, Grace was found to be very bright; unfortunately, long-term psychosis caused her IQ to plummet from over 135 to just 81. She attended special education classes for emotional support from second grade through middle school, then Lifeworks Alternative School for high school. Grace is 24 now. She is a college student, making A’s and B’s and working hard to regain her lost IQ points. She still has hallucinations at times—usually brought on by stress—but now she knows they are hallucinations, and does her best to ignore them. She volunteers for Voice & Vision and receives help from their College Plus program. She participates in TIP (Transition to Independence Process), where she has gathered the courage to learn to drive. Anne says, “She’s gaining ground: gaining IQ points. She’s finding her way.” Anne’s hopes for Grace are that she’ll get her driver’s license, keep her anxiety in check, and complete college.
Lauren was born when Grace was 2 ½. She was a quiet child and was slow to develop language skills. Initially it was thought that she had hearing loss, but testing revealed autism and intellectual disability. As a little child, Lauren had no fear of personal danger—she kept her parents on their toes, because she was a climber who felt most secure when she was more than four feet above the ground. Anne says, “If we wanted to find Lauren, we looked up, and there she was.” Lauren benefited from Early Intervention services, which included having teachers and therapists come to the house to work with her. At age 3 she went to preschool to learn basic skills, including bathroom skills, classroom skills and sign language, so she’d be prepared for kindergarten. Lauren attended special education classes throughout her school career. She graduated from high school last year and is employed in a vocational workshop program several days a week. She likes working. She likes receiving verbal approval, she likes to be busy and she likes getting a paycheck. She is 22 now, her emotional age, however, is between 5 and 7.
Michael was born when Grace was 10 and Lauren was 7 ½. His parents held their breath as he turned two—the age at which his sisters’ challenges became evident. Michael appeared to be healthy and bright, but when he began school, a “specific learning disability” became apparent: because of an IQ imbalance (part of Michael’s intelligence is in the superior range, part is in the inferior range), he has no phonics capability and couldn’t learn to read. The local school district was unable to provide for his needs, so Anne enrolled him in Agora Cyber Charter, an online K-12 program with a special education team. Michael’s teachers allowed Anne to read to him so he could keep up in science, history and math, while they worked with him to improve his reading skills. Because Michael has an excellent memory and remembers a word once it’s been identified several times, his reading skills are now almost normal for his age and he’s doing all his own reading. He is an exemplary student and, although he is only in 9th grade, he is currently enrolled in 10th grade honors English. He has high mechanical aptitude and there is a long line of engineers and draftsmen in his family tree—Anne hopes he’ll follow in their footsteps.
I asked Anne how she coped with all the challenges she’s faced. “I have a strong faith in God.” she said, “That has gotten me through a lot of tough times.” Journaling was helpful, too—it enabled her to see that her family was making progress. Returning to the workforce was invaluable for Anne; she took a position with Voice & Vision eight years ago and says working with people who understood what her life was like made such a difference to her.
I asked Anne how she and her husband, Tom, kept their marriage strong despite their struggles. She says they both have a good sense of humor and are very patient people—Tom also shares her strong faith: these qualities have helped them as a couple and as parents. Because their daughters were receiving “wraparound” services—with teachers and therapists coming to the house throughout the day, requiring a parent to always be present—for about ten years the couple never got to leave the house at the same time. So they found a special place where they could spend time together alone—their garage! They’d slip out there for 15 to 30 minutes a day—just to look each other in the eye and talk. Tom knew Anne wished their house had a fireplace, so he bought a space heater that looked like one—they kept it in the garage and enjoyed its warmth during their chats.
Anne shared some advice for other parents of children with special needs:
First: “Reset your life goals.” As hard as it may be, come to terms with the fact that your life isn’t going to look the way you had hoped it would. As Anne puts it, “You’re not going to be the soccer mom you dreamed you’d be.” Instead, she recommends focusing your energy on becoming the parent your child needs.
Next: “Connect with another family that’s going through what you are.” Whether you share information and encouragement or you’re just able to vent to each other, friendships with people who are in your same situation can be “absolutely priceless.”
And finally: Anne suggests using humor to maintain a positive perspective. She highly recommends the book, Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children by Gina Gallagher and Patricia Konjoian.
*Names have been changed to protect privacy.
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