Moms on Monday #3 / Subarna from VA

This week’s Mom on Monday is Subarna from Northern Virginia.  She shares some of the struggles and recent successes in finding the right placement for her son, Rohan, who, like so many children with CVI, has several issues affecting his ability to learn and to communicate.

Hi, I’m Subarna and my son Rohan is 10 years old. We live in Virginia, very close to his new friend, E.

Rohan got a diagnosis for CVI at age 3 years because of a persistent vision/preschool teacher who kept asking me to bring him to Dr. Christine Roman in Pittsburgh. He had already been through a serious illness at age 6 months resulting in continuous seizure activity (Infantile Spasms) which it seemed no treatment could stop for months. When we finally did find the right medication, the full extent of his developmental delays were presenting. It was determined he had global delays and Autism. We spent countless hours doing every type of therapy. He always would avert his gaze when reaching for things, but it was explained that it was a common behavior for children with ASD. Otherwise, he seemed to navigate around our familiar areas well enough, so I never suspected anything else.

After seeing Dr. Roman, who found Rohan’s case to be quite unusual that he truly had both CVI and ASD, we had quite a challenge convincing his school team that he needed vision support. One teacher told me:  you need to choose, either ABA (which absolutely works for him) or vision!?!  

We went through many years of this battle between his ABA folks not being able to understand the CVI. The TVIs as a whole didn’t always know much more than me about his level of CVI (which has always been between 6-7). I had a few great ones, and always found them to have the most expectations for him. His teachers felt that he was intellectually disabled and that was the reason he couldn’t learn at the pace of his peers.

As he fell further and further behind in the class, he started getting frustrated and had significant behaviors hurting himself. We tried a new school that was just as rigid as the public school setting, so he failed yet again. This past spring, when I tried to Home-school him and it was no better, I had pretty much given up all hope. We finally found a school that seemed to have the ability to listen and collaborate with others.  They have been able to accommodate for his vision. We are also working with an ABA group privately who learned much about CVI and are helping him use his vision more.

For the first time in his life, Rohan is making progress in all areas. He is happy and so are we!  He loves music more than anything, especially the Beatles. He also loves being read to, listening to his younger brothers, jumping on his trampoline, and eating everything in sight!  

It took me this long to believe that my son could do more than people said he could.  I’m glad we didn’t give up. You shouldn’t either!

Thank you, Subarna and Rohan!  It is a pleasure to learn that you have found a school placement and a team of providers that is working for you.  Thank you for sharing your experience and insight. 

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CVI Momifesto

CVIMomifesto is a blog dedicated to parent advocacy and community for families of children with Cerebral/Cortical Visual Impairment. Families of children with ocular visual impairment belong here too. Welcome! We are in this together.

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