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Connecting with Parents Just Like You

Even though decades have passed, my son is grown and is now a physician, I still remember the day when Alex was first diagnosed with rare infant eye cancer. Though those early days were difficult, I am proud of his journey (and mine) over the many years since. I craved information. I wanted, and needed, to learn everything I could about his condition and ways I could help him. I turned my frustration into action and founded a parent network to share what I had learned with others: to help parents learn how to advocate on behalf of their children with vision loss.

I’m now in a new chapter of my life and proud to partner with Future In Sight to help start up the NH Parent Connect to help parents across NH learn ways to help their children live and thrive with vision loss – and build connections with other parents. Here are a few lessons I’ve learned along the way that might help you in your parenting journey on behalf of your child with vision loss.

Become Part of Parent to Parent Network

Sometimes it seems as though the only people who understand what you’re going through are people who have been there too.  Other parents of visually impaired children, either individually or in organized groups, can offer informed advice, excellent information and ongoing support. For this reason we are thrilled to announce Future In Sight is launching the NH Parent Connect program, creating the opportunity for parents to join together via face to face workshops, webinars, and family events. We invite you to join this initiative, to learn from others, and to contribute your ideas to make a vibrant parent and family association.

Become an Advocate for Your Child

Do you feel that you are an Equal Partner in your child’s development and education?

As parents you know your child best, and you are your child’s first teacher. Your observations and knowledge about your child are so important. Yours is the most significant role and relationship consistent throughout your child’s life.  Many other people will be a part of your child’s life within the community and school, including specialized services and experts within the medical and educational fields. It’s important for you to recognize the significant role you play – and to have the confidence to express your opinions and suggestions. You can be a “Voice” to advocate for your child to ensure she/he is receiving the best medical care, specialized educational services, and equity in everyday life.

 Understand Your Child’s Eye Condition

Childhood visual impairment is known as a “low incidence disability” within the general population. Eye conditions that cause a visual impairment are extremely rare and can co-occur with other disabilities. As a result, it is often very difficult for families to find information about their child’s eye condition and how it impacts their visual functioning. Some resources on childhood eye conditions can be found through your child’s ophthalmologist and the American Academy of Pediatric Ophthalmology website.  https://aapos.org/patients/patient-resources

Visual impairment may be caused by conditions of the eye, but not always.  The fastest growing cause of visual impairment is neurological in nature.  The eyes may be perfectly formed and function normally, but when the brain cannot process the information received from the eyes, this is called Cortical Visual Impairment (CVI).   CVI is often, though not always, associated with other disabilities, prematurity and oxygen deprivation.  An excellent source of information on CVI is cviscotland.org.

Visual impairment, whether ocular (eye-based) or neurological (brain-based), can be congenital (present at birth) or acquired (develop or occur over time).  Some impairments are genetic and degenerative, meaning that the child will gradually lose most or all of their vision over a period of years.

Research and Access Educational Services

In the U.S. we have a Special Education Law called the Individuals with Disabilities Education Act (IDEA) that requires that vision related services be delivered to students by qualified professionals. Plus, the modifications/accommodations needed by students with vision-impairments to learn and participate actively in school are to be identified and put into place for each child. This is done through the development of your child’s Individualized Education Plan (IEP) by the IEP Team of which Parents are “equal members”.  Your participation with the team is key because of your knowledge of your child and their unique needs for learning as it relates to his/her visual impairment.

Parents, I’d love to meet you in person. I hope you’ll join us for the first NH Parent Connect workshop “Advocating for Your Child with Vision Loss” held Saturday March 28.

Simply put: Remember you are not alone. We’re here to help you navigate your way, and have the tools you need to help make life easier. Participating in NH Parent Connect is a great way to build relationships that support you. Call or email to get started.  I can be reached at NHParentConnect@futureinsight.org  or (603) 224-4039.

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