This is how we live.

CVI: This is how we live.
CVI: This is how we live.

When you are raising a child with cortical visual impairment (CVI), life looks different. It not only looks different for your child, it looks different for parents. CVI accommodations do not end on Friday afternoon when the school bell rings. For CVI families, accommodations happen all the time, everywhere, all day long, all the way up to and including bedtime. The accommodation follows the child with CVI…everywhere. Even on the weekend.

Providing social inclusion and social opportunities for your child with CVI is always a  goal, or at least a hope. On a subfreezing weekend, our plan was to meet friends at an indoor climbing gym. Never mind that we typically avoid places like indoor climbing gyms or indoor playgrounds, museums, zoos on busy weekends. This meant explaining to the other parent. No, not an apology. No, not “I’m sorry.” Just, This is how we live…can we go at a less busy time? This is not so much about applying an approach. It is more like a coping strategy. It is more like avoidance. Often it makes life a little easier. We are trying a new thing, so let’s try when the environment is less busy. So many activities, so much of life, is approached this way.

I don’t know about you, but this is how we live…

Air travel. Are you traveling with a child under two? No, but I am traveling with a child with a disability, cortical visual impairment. That means we board early. We need extra time to walk onto the plane when there are few people already on board. We need to familiarize ourselves with the bathroom (because bathrooms are hard and airplane bathrooms are the worst). And in case I’m not feeling brazen enough at the crack of dawn to preboard with my school age child, rather than with an infant or toddler, a strange gentleman will mysteriously appear beside me out of thin air and say, “Go ahead, go on. You have him, you should go first” (based on a true story, one of our magical people).

Bathrooms. Using the bathroom is not the social opportunity you are seeking but it is a fact that you cannot avoid if you are going to be out and about in the world. Bathrooms are difficult for so many reasons, from the sensory experience to the lack of public restrooms that are accessible for people with disabilities. Our strategies are about finding the quietest, least trafficked bathroom. Is there a nice, big, spacious family bathroom? (Three cheers for family bathrooms!) Is there a less busy bathroom that is more out of the way? Sometimes the answer to both is no. At these times, depending on the urgency of the situation, we might just wait it out for a few minutes. When she’s done with the hand dryer, it will be our turn. You can read more on CVI and bathrooms here.

Birthdays. Birthdays are hard on so many levels. A large group of kids (complexity of array, Roman). A large group of kids moving (movement). A large group of loud kids (sensory complexity). Birthday party decorations (more complexity). Being late to the party gets old, but birthdays seem to work out best when we arrive either early or late. You can read more about CVI and birthdays here.

Museums and public attractions. Again, the strategy of go early or go late, comes in handy. Of course, early or late is not always possible. Arriving at peak times, dealing with waiting in long lines of people, unable to push through a crowd to even get close enough to see an exhibit or artwork, let alone trying to make the experience accessible for your child with CVI, might not be worth it. Constantly weighing, Is it worth it to visit New England Aquarium in the middle of the afternoon? Can my child with CVI still have a meaningful experience in the midst of such chaos and so much complexity? The only person who can answer that question is you. Don’t forget – the answer may very well change, or be altered, after your experience. Hindsight.

Recreation. Going to playgrounds at quiet times, perhaps when most people are  starting dinner. Biking, hiking, public attractions.. going to more out of the way places or going at non peak times. Planning adaptive ski lessons during the week when only a few other people are there, instead of on crowded weekends. And guess what? He does so much better with fewer people, with less complexity. He is more focused. He is learning more. He is reaching his potential more. Most importantly, just…having fun more.

Restaurants. Our old strategy of arriving early works great at restaurants. An even bigger factor is seating. The impact of seating hit me a few years back, when we met a friend at a local, kid friendly ale house. On the length of one wall was a long cushioned bench seat with several tables dotted alongside it. At the end of the day, those cushioned benches tend to call out to weary parents and we could not resist choosing to sit there. That meant facing the entire restaurant, which was not terribly busy, but the view included numerous lights, servers walking by repeatedly, guests coming and going, and large screen television sets projecting sports games. My child with CVI had the hardest time sitting there, let alone sitting still. The sensory overload meant that eating took far longer than usual. Attending to a question from our friend was difficult. Afterward, of course, it hit me – no more cushioned benches that face the entire restaurant. If only they could find a way to arrange those benches facing a nice, plain wall.

Our habit now is to request a table by the wall, or by a less complex area of the restaurant. His seat is the one that faces the wall or the least amount of visual complexity. This may even involve CVI parents rearranging the restaurant furniture. So if you find yourself rearranging the tables, it is Ok, you have permission to rearrange the furniture for your child with CVI. Even so, as soon as he finishes his meal, regardless of whether mom or others are still eating, he is up out of his seat. He is moving around, wanting to spin, he is all done with the restaurant experience and ready to go.

Santa. Seeing Santa in the city means waiting in a long line, or waiting to stand in a long line. Right away, it was clear that going later in the holiday season to see Santa, worked best. Depending on the calendar, this often meant waiting until the school break. We looked for that window of a few days between the start of break and Christmas day (not the weekend), that we could visit Santa during the week. Shorter lines, fewer people, less hustle and bustle. This also means that using a Santa photo for your holiday card is not an option. For us, waiting made for a better Santa experience. And yes, there are special needs Santas, with shorter lines, shorter waits, fewer kids, low sensory environments, etc. Special needs Santa is always an option.

For CVI families and parents this kind of constant, ongoing thoughtfulness gets  exhausting. It tends to keep you on edge the whole time, never knowing what to expect, no matter where you go or what time of day. Are we here early enough? Are we too late? Will the restaurant have an empty table by the wall? Will the sensory complexity be too much for him and how will he respond? It keeps a CVI parent on her toes.

This is how we live…with cortical visual impairment.

 

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