Where is the best place in the country or world for my child with CVI to get an education? What are the attributes of a successful team?

I get the question all the time, “Is there some place I should live so my child can get a teacher who knows CVI?”.  Well, that is a difficult question.  It is obvious that most of the intense training based on The CVI Range has hovered around the east coast.  But there is no guarantee that moving to Connecticut or Massachusetts will result in your child being properly educated. None the less, parents certainly try this tactic.  It is not uncommon for families to maintain two addresses or uproot completely in pursuit of the teacher who embraces their child’s complex needs and actually knows how to teach using the CVI characteristics as the centerpiece of their program.  But does such a thing even exist?  Is it realistic to expect already overburdened educators to also be experts in the specialized programming needs of children with CVI? Is there a place or tribe of specialists who can reliably teach children with CVI?  Where on earth should I suggest parents find such an individual?

This elusive creature, this rare bird does actually exist-we all know the legends and can name their latest habitat and behaviors.  It is a thing of beauty, this thing that soars across the landscape of your child’s education and leads the migration of the others to the destination of your child’s future.  And, in fact, this breed of CVI specialists have been spotted over the globe though not in large numbers.  Perhaps it would be helpful to try to understand them more carefully so we know where one might be found.

The CVIus Adeptus is a creature of strength and unfailing determination.  Like it’s relatives who travel thousands of miles a season this creature cannot be blown off track or deterred from the mission it knows to be it’s destiny.  CVIus puts in dedicated days and if necessary will stay after school to ensure that the inherent lessons are mastered.  It is keenly smart to the point of being cunning. Like its’ relatives, the Raven, the CVIus Adeptus is not naive about people’s intentions and thus builds a team of members who share the goals of the mission to further protect its’ success. Always learning, never static while keeping a watchful eye on the family who in turn add their own learning to benefit the flock.  The CVIus Adeptus is fierce, adaptable, intelligent and clever.  It is never going to give up.  Legend has it that Gene Kranz from the Apollo 13 mission, used the phrase “failure is not an option” after watching this breed at work.

So, back to the question, “Where is the best place for my child with CVI to get an education?”.  There is no place.  There are only people.  My heartfelt advice is to get out your binoculars and carefully scan for that elusive person.  You will find one, maybe two.  You’ll recognize them.  They will find your child a delight.  They will intrinsically recognize your expertise.  They will agonize over your child’s program and with you as partners, write a clear and powerful IEP.  They will listen and hear you.  They will lead your team with the determination of a lead bird migrating to the unquestioned destination. They will delight at your child’s successes and never forget your child’s birthday.  They will find it exciting to stand in front of the team or in fact the entire school and teach them about CVI. They will sit on the same side of the table with you at meetings. They will investigate plateaus in your child’s learning with the ferosity of J. Edgar Hoover.  They will be heartsick when your child’s seizures worsen or when surgery is once again required.  They will ask you to come to school and watch you work with their child.  They will assess your child fairly and carefully.    They will continually take courses on CVI to improve their skills. They will welcome your phone calls on weekends. They will have the ability to apologize.

Of course, the dream is to have CVI experts populate the world in ample numbers.  But for now, they may be off the endangered list but likely still a protected species.  Only when policymakers see children with CVI as members who have critically unmet needs will we no longer have to work so hard to find the special places with the special breed of people.