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Supporting Children with CVI: A Parent's Perspective

Gain valuable insights and guidance from a parent's perspective on raising a child with Cortical/Cerebral Visual Impairment (CVI). Discover the challenges, resources, and importance of early intervention services for children with CVI.

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Supporting Children with CVI: A Parent's Perspective

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  1. CVI From a Parent’s Perspective Rebecca Davis, CVI Parent Founding Mother of Visually Impaired Preschool Services (VIPS) Indiana

  2. Who is Here Today?

  3. Hello! Welcome Fellow Parents!

  4. Introducing…

  5. Your Children/Students

  6. Eliza’s First Year

  7. The First Years “One of the great myths of our society is that when women are left with small children, they are not alone. The truth is that a mother left with babies is far more alone than she would be without them; every bit of energy, attention, protectiveness, and care she might use to meet her own needs must first be directed towards the needs of her children.” - Martha Beck, Expecting Adam

  8. The First Years WHAT DO I DO WITH THIS KID?!? • Stared at windows and lights • Her head hung down all the time • Didn’t like going out to public places • I couldn’t reach her

  9. She needs to see the world And the world needs to see her.

  10. The Problem

  11. Moving Forward Together .. • You are not alone • You and your child have a right to Early Intervention services • Specialized early intervention is the treatment for children with CVI • What you can do to provide your child access to the support and educational services she needs

  12. You are not alone • Welcome to the club you didn’t ask to join. • Becoming a parent of a child with Special Needs “The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother never. A mother is something absolutely new.” - Ragneesh

  13. You are not alone • Early Challenges Facing Parents of Children with Special Needs • Trauma • Grief • Isolation • “Diagnosis Days”

  14. You are not alone

  15. You are not aloneLemonade “Everything happens for a reason.” “God doesn’t give you more than you can handle” FYI: God has seriously overestimated my abilities.

  16. You are not aloneBecoming the Parent of a Child with CVI • Cortical/Cerebral Visual Impairment is visual impairment due to damage in the visual cortex of the brain • DiagnosES • Experts - Neurology vs. Pediatric Ophthalmology vs. Pediatric Neuro-Ophthalmology • “The more we learn about this neurological visual impairment, the more complicated the conversation becomes…” – http://tech.aph.org/cvi

  17. Is CVIComplicated? ✔ Frustrating? ✔

  18. CVI Parents – Common Challenges Drs. Gordon Dutton and Amanda Hall Lueck have identified 3 groups of children with CVI • Children with profound visual impairment and multiple disabilities • Children with CVI and functional vision and cognitive challenges • Children with CVI and functional vision and who work at or near the expected academic level. (Vision and the Brain: Understanding Cerebral Visual Impairment in Children)

  19. CVI Parents – Common Challenges • Getting the diagnosis • Delayed Visual Maturation (“Don’t buy trouble.”) • Finding a Pediatric Neuro-Ophthalmologist • Getting Pediatric Ophthalmologists and Pediatric Neuro-Ophthalmologists to understand the importance of early intervention • The “prescription” for CVI in an infant or toddler is specialized Early Intervention provided by a Teacher of the Visually Impaired or another service provider with extensive training in the unique learning needs of children with CVI. • Time is of the essence. • NO.“Wait and see. NO. There's nothing I can do. NO. Come back in six months. NO. There’s nothing you can do. NO. It may improve. It may not. NO. Come back in a year. NO. Wait and see.”NO NO NO NO NO! • Pediatric Ophthalmologists must refer their patients with CVI to the state early intervention system. YES.

  20. We are CVI Parents. We are our own best resources. Our children share a diagnosis. As CVI Parents • We want the best start - medically, educationally, and socially for our children. • We may face the same challenges within the medical community and the educational community – no matter where we live. • We want our children to achieve their full potentials. • We should get discounts for life on colored duct tape, flashlights, black fabric, and mylar pompoms.

  21. CVI Parents: YOU are the expert on your child You have the big picture in mind. Information about CVI is still emerging. You put the pieces of the puzzle together.

  22. Early InterventionWhat is it? Why is it so important? • What is Early Intervention? • Early intervention is the process of providing services, education and support to young children who are deemed to have an established condition and their families. • Services are designed to identify and meet a child's needs in five developmental areas: • physical development • cognitive development • communication • social or emotional development • adaptive development http://www.wrightslaw.com/info/ei.index.htm#sthash.smYY48sC.douf

  23. Early InterventionWhat is it? Why is it so important? Early Intervention is for the parents too! • Home visits • Stress impedes learning • New normal

  24. The IDEA Behind Early Intervention • IDEA: Individuals with Disabilities Education Act • The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities. • https://www2.ed.gov/about/offices/list/osers/osep/osep-idea.html • Part C of IDEA: The Early Intervention Program for Infants and Toddlers with Disabilities

  25. IDEA Part C • 1.Congress established the Part C (Early Intervention) program in 1986 in recognition of "an urgent and substantial need" to: • enhance the development of infants and toddlers with disabilities; • reduce educational costs by minimizing the need for special education through early intervention; • minimize the likelihood of institutionalization, and maximize independent living; and, • enhance the capacity of families to meet their child's needs. • 2.The Program for Infants and Toddlers with Disabilities (Part C of IDEA) ...assists states in operating a comprehensive statewide program of early intervention services for infants and toddlers with disabilities, ages birth through age 2 years, and their families. • In order for a state to participate in the program it must assure that early intervention will be available to every eligible child and its family • Currently, all states and eligible territories are participating in the Part C program. Source: http://www.wrightslaw.com/info/ei.index.htm#part

  26. Early Intervention (Birth to 3) Why is it so important for children with CVI? • As much as 85% of brain development happens BEFORE age 5 • As much as 80% of all learning occurs through the visual system Vision loss affects every aspect of a child’s development. Children with severe vision loss need special early intervention to learn to use the vision they have, and to learn to use their other senses to understand the world. They do not have access to incidental learning.

  27. Incidental Learning (Important for parents to understand) • From the moment you open your eyes in the morning to the moment you close them at night, you are constantly taking in information without even trying. Incidental learning is the information you receive with your eyes without thinking about it. • Miss Annie’s Blue Bowl Story Good resource for incidental learning: http://www.familyconnect.org/info/education/tips-for-families/incidental-learning/125

  28. The Reality of the Situation Despite IDEA Part C, parents have difficulty finding specialized early interventionists for infants and toddlers with CVI. “Luck of the Zipcode” • In some states, if an agency provides specialized early intervention for visually impaired infants and toddlers, the services are NOT ongoing or frequent. • In some states, no state agency or school provides specialized early intervention for visually impaired infants and toddlers. • In some states, if you live outside of an agency’s service area, your child will not receive services.

  29. The Reality of the Situation There is a national shortage of providers. • Teachers of the Visually Impaired • Early Interventionists • Pediatric therapists in all categories • Teachers and providers trained to work with children with CVI

  30. CVI Parent Action Plan - ACE it. • Advocacy • Ask your state’s Early Intervention system if they provide frequent, ongoing specialized intervention from a Teacher of the Visually Impaired • If the answer is yes, congratulations! • If the answer is no - • Contact the DeafBlind Project in your state • Ask for providers with CVI endorsements (Don’t take no for an answer) • Community • www.pediatriccvisociety.org • The 2017 American Conference on Pediatric CVI – June 9 & 10 • Social Media – Blogs, Facebook, Pinterest • Education • Tell your pediatric ophthalmologist children with CVI need to be referred to your state’s early intervention system. • Tell your early intervention team they need to be trained in working with children with CVI.

  31. To Paraphrase Justin Dart… “Advocate as if your child’s quality of life depended on it. It does.” “Get into politics as if your life depended on it. It does.” ~~ Justin Dart, Disability Rights Advocate, 1996

  32. What Now for You?

  33. Resources (From One CVI Parent to Another) Books Beck M. Expecting Adam 1999 Three Rivers Press NY, NY Gill B. Changed by a Child 1997 Doubleday, NY, NY Roman-Lantzy C. Cortical Visual Impairment: An approach to assessment and intervention 2007 AFB Press NY, NY Wyn N. Blue Sky July 2007 Penguin Group, Inc. NY, NY Sites www.littlebearsees.org http://tech.aph.org/cvi/ www.perkins.org www.wonderbaby.org Social Media Blogs: https://cviteacher.wordpress.com, http://sayholalola.com Facebook: Cortical Vision Impairment (CVI) – DIY Support Tools, Cortical Vision Impairment (CVI) Support, CVI Phase III Community Support, Olivia’s Pediatric CVI Society Fundraising Page, Start Seeing CVI Video https://youtu.be/9ABQ-U6V0tY (Watch this video! It’s a fascinating explanation of CVI in a woman who had a stroke.)

  34. Links http://www.perkins.org/stories/magazine/improving-outcomes-for-children-with-cvi http://www.afb.org/info/living-with-vision-loss/eye-conditions/cortical-visual-impairment-traumatic-brain-injury-and-neurological-vision-loss/statement-on-cortical-visual-impairment/1235 Information about the National Family Association for Deaf-Blind https://www.youtube.com/watch?v=wvpw1bOU94M Information about Special Education Law www.wrightslaw.com

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