Reagan, left, and Kennedy are very close.
The girls participate in many activities. Here Reagan is in a play group, experimenting with play-dough.
Kennedy is developing white cane skills so she can move safely and with confidence.
Our Early Intervention Specialist works with the children to develop their sensory skills using play and other activities.
Reagan, age 3 and Kennedy, age 2, are baby sisters who share many things. One is the fact that they’re having happy, active lives, and another is a congenital vision impairment called Lebers Congenital Amaurosis. When Reagan was first diagnosed, her parents, Audrey & Richie, brought her to the Lighthouse. Then, when Kennedy was just 4 months old, she too became a Lighthouse client. They are in our Early Intervention for Babies and Young Children Program. Becky Barber, our Early Intervention Specialist, works directly with both children and the parents, in order to teach the children how to maximize their residual vision. Becky is working on other vision related activities too, such as helping the children identify colors, and the development of hand-eye coordination, and self-advocacy.
At the same time, Reagan is attending a pre-school program in order to develop skills such as braille and white cane, and the prerequisites needed such as fine and gross motor skills. Reagan is also waiting for her new glasses to arrive—they contain a bifocal to help her with near vision. Mom and Dad are relieved, and also, they have been really busy; they have 2 growing children who are curious and enthusiastic, and into everything. In addition to learning skills for adapting to vision loss, the little ones are learning to swim, attend library and music programs, have playdates with youngsters who are sighted and visually impaired, and they are doing things their parents had thought would be too difficult at this age with visual impairment, like racing around at the park and climbing on the jungle gym. Reagan is also having a great time playing T-Ball and soccer around the house.
Before ever knowing about Lebers, the babies’ mom was a grade 2 teacher, with a Master’s in Special Education. So Audrey understands how learning occurs and about early childhood development. She plans to return to work when her children are older; however, she hasn’t stopped being a teacher. She is involved with both of her children’s programs and activities, and is always looking for more ways to support them in their adjustment to vision impairment. Adjustment is an ongoing process—for the children and for Audrey & Richie. The children’s visual acuity may change with age, and as the parents work to support the needs the children currently have, they are preparing for the future with positivity. Just recently, Audrey attended a technology conference, and visits regularly with Arabella, and her mom Brandi (another Lighthouse baby and her mom).
Learning in this environment is a little different from other situations. Reagan, the oldest, used to be apprehensive about stepping over cracks or using steps, and would bum-scoot instead. However, she now mimics her younger sister by stepping over things more confidently. Kennedy is also picking up on things because of Reagan’s training. Kennedy has been using verbal cues and directional words like ‘over’ and ‘under’ to describe where things are placed. And they both understand, to the degree they are able, that some people see differently. For example, they are quick to provide toys with lights to their friend Arabella because that helps Arabella to see, or to guide each other as necessary.
At this time, print is the children’s biggest challenge, and for this reason, a lot of parallel learning is underway. However, the children love their printed books and are reading many from memory. This is where their learning environment is the same as other children—they are developing a love of literacy from their parents before they ever learn to read. Audrey and Richie are excited about their children’s development and proud of their children’s accomplishments. Audrey says, “Acceptance of vision impairment has made it easier to support our children with meeting their milestones;” and, their love and support is helping their children with feeling good about themselves and with integrating everything.
In April, Reagan and Kennedy attended our 2017 Beeping Easter Egg Hunt. See Reagan and Kennedy and many others in our event slide show. You can also read “Youngsters with vision problems enjoy Easter egg hunt” by The Suncoast News.
The Annual Coronation Chasco Ball raises funds for programs provided to our babies, children, and teens. These program are also made possible by donations and grants. Thank you for your support.