Moving mountains

Leaving the Pacific Northwest and Seattle, the place that was home for twenty five years – twenty five years – does not feel like failure. Instead it feels like doing the right thing for my child. It feels like exhaling for the first time in nearly eight years, since my son’s diagnosis of cortical visual impairment (CVI).

Leaving was not an easy decision. Leaving was not a hasty decision. For a long time, the idea of leaving itself felt like failure. Failing my son, failing to get his needs met, failure as a parent.

How many of us parents can raise our hands high and confidently say that the we get the educational needs met for our child with CVI? I can’t. Too many of us cannot.

This past year, CVI parents have pulled their children from the public education system, taking education into their own homes, because schools are failing our kids with CVI. Other families moved across states, usually to New England, in search of a better education for children who are well into their educational careers but have yet to find a CVI appropriate educational setting. Our own move was 3,000 miles away. Not to be outdone, another family made the 8,000 mile move from South Africa to The Netherlands. So far, with good results. CVI parents go to great lengths for their kids.

The reality is that leaving Seattle for Connecticut does not feel like failure-it feels like empowerment.

The last school year was a failure. Sitting in countless IEP meetings, with a special education attorney, and easily outnumbered by a dozen school team members and administrators sitting around the table. Still not listening, still not getting my son’s needs met and into the IEP (for needs read: CVI accommodations based on CVI Range assessment). Leaving does not feel like failure. Leaving feels like taking control of a situation that made me feel powerless when it came to my child’s eduation, his progress, and his future.

IEPs are hard, hard, hard. “Getting needs met” does not mean that a parent’s IEP Wish List is fulfilled. Parents, particularly parents of children with disabilities, are not naive. “Getting needs met” is about his cortical visual impairment. Meeting the needs of his CVI is not negotiable. His CVI accommodations are not negotiable. His CVI modifications are not negotiable. CVI team training is not negotiable. Having a TVI with Phase III CVI expertise is not negotiable. Because when we are talking about my child’s cortical visual impairment, we are talking about his access to the curriculum, his access to learning, his access to his environment. Christine Roman describes CVI as a disability of “visual access.” Visual access is where education begins. Without visual access, learning does not happen. Education does not happen. Progress does not happen. Without visual access, FAPE does not happen.

When it comes to educating children with CVI, parents have come to believe that having a teacher of the visually impaired who is “willing to learn” is enough, as if “willing to learn” is the most that parents can hope for, as if “willing to learn” is the best we can do for students with cortical visual impairment. Why do we view our students with CVI this way, as if they are only worthy of “crumbs,” as a TVI friend put it? Think about this – if you needed heart surgery, would you settle for a surgeon who was “willing to learn” the procedure? Of course you wouldn’t. You would find somebody who was an expert at that procedure and knew exactly what they were doing. You would find somebody who could perform that surgery blindfolded.

To all parents, I want to say, do not wait seven and a half years.

Post. Script.

Moving across the country has been a constant learning experience. Learning more about my son. Learning even more about the impact of his Phase III CVI and specific CVI characteristics. Learning why placing a dish towel on the refrigerator door in our new, empty home when he is not expecting it, is a violation of his space and he may respond accordingly. Learning about the importance of how we teach educational teams about CVI. Learning about the importance of the language we use when we describe cortical visual impairment to new providers. Learning to see CVI in every behavior. Learning about the importance of trust, anticipatory and radio language. Learning to start over (one more time). Trading sensory diets and sensory break schedules for appropriate CVI accommodations.

As Christine Roman put it, hold onto “everything that you know is true” about your child with CVI.