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Making connections
Swaying to an upbeat song playing on the family's CD player, three-year-old Max Smith-Levin wore a gigantic smile. The happy, music-loving toddler was as active as any little boy.
The difference for Max is that he was born with an extremely rare condition called bilateral anophthalmia. Simply put, he was born without eyes.
Max's parents, Jennie Smith and Alan Levin, found out about their son's condition in a pre-natal examination, and had only 16 weeks to prepare for the full-term delivery.
Smith, a special-education teacher, specializes in early intervention, working with children from birth to five years of age. So she was more than familiar with the overload of doctor appointments, school meetings and insurance paperwork that normally faces parents of children with special needs.
The challenge for Smith and her husband was getting information on the facts of the condition and the resources available.
Recent surveys show that 65 percent of parents of children with visual impairments look to the Internet for information about health problems.
Two organizations, the American Foundation for the Blind (AFB) and the National Association for Parents of Children with Visual Impairments (NAPCVI), responded to this need by developing much-needed services.
“When I talk to parents of visually impaired children, they almost always ask about three things, said Susan LaVenture, executive director of NAPCVI.
“They want to talk with other parents who have children with the same eye condition as their child; they want access to the latest health and education information; and they want to know what the future holds.”
With that knowledge, the AFB and the NAPVI launched a new Web site. FamilyConnect, (www.familyconnect.org), is a Web community that brings parents of children with visual impairments together to share information, parenting tips, and resource links.
Smith and Levin immediately got involved with FamilyConnect and are featured in a video on the Web site.
With the participation in the site's message board, Smith and eight other mothers set up a Web site for parents of children with microphthalmia (unusually small eyes ) and anophthalmia.
Within just a few days, the volunteer support group had contact from parents in Australia, New Zealand, England and Canada, all wanting more information on the conditions, treatments and options.
“Parents are the best resources for other parents, Smith said of the global interest in the parent support group. “They are the expert on their child.”
Smith and Levin, both parent-experts, take different approaches to Max's development.
While Smith is concerned with finding available services and resources for Max's future, Levin takes it one day at a time, “watching his day-to-day development in slow motion.”
But they come together on focusing on the possibilities for Max, not the limitations.
“He's a kid first, more alike other children than different,” said Smith.
She said that he likes Elmo, playground slides, and swimming pools.
It is Max's father, as a stay-at-home dad, who makes sure that Max has a full, enriched day. They take walks, visit relatives, and go shopping. Max especially likes to go to the home-improvement stores where he can listen to doorbells and feel carpet textures.
While he can hum the music to more than 100 songs, he has limited language skills.
To help with his communication, Smith has taught Max to use some American Sign Language gestures. He now knows 32 signs.
Teaching a blind child to sign is a challenge, but Smith said that it is worth it. She cites research that “children who used signs as babies actually have more spoken words as they grow than their non-signing peers.”
Smith and Levin want to expose their son to as many activities as possible, but in doing so Smith said, “We want the community to view Max as Max.
“Kids are not broken and don't need to be fixed.”
E-mail the reporter: afelts@timespapers.com.
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