There are many things on which my parents and I disagree. But I do know that they've done their best to prepare me for adulthood. Once I reached adulthood, they've treated me like an adult as much as any parents can. Through this letter, I am hoping to open up dialogues between adult blind children and their parents.
In some ways, it doesn't matter whether one is sighted or blind. I include myself in the many adults who feel they revert to little-kid status when they take the trip home to visit their parents. It's easy to jump back into the old roles of parent and child. For blind adult children and their parents, it's even easier to go back into those patterns. One of the biggest contributors to this is the inability to drive. For blind adult children to maintain their independence, they must either know the transportation system and city in which their parents live or have money for and access to cabs and other driver services. Otherwise, we have to surrender or at least compromise some of our independence in deciding when and where we want to go. My parents live on a farm, so I have very few choices in this arena. This is just a fact of life. When I plan for the duration of a trip to my parents' home, I remind myself of this. For me personally, a week is about the maximum I want to spend visiting my parents.
A second factor is the reduced accessibility for adult blind children when out of our own home environment. Computers don't have screen-reading software which makes the computers accessible to us. TV programs aren't automatically set for description, and forget trying to use remotes! There are times when my parents like to sit quietly with a newspaper or other printed material and read. Sometimes, buttons on appliances are visible to sighted people, but we can't feel them. Many -- from the TV to the washer and dryer -- operate on inaccessible menus. Braille is rarely on appliances and talking clocks aren't always within reach. For a short while, some of these can be advantages. I'm not a cook extraordinaire, and my mother is. Therefore, having an excuse to let my mother do the cooking is just fine with me. Mom also washes, dries, folds, and organizes my laundry when I visit. She would faint if she saw the disarray of my closet and drawers at home. I also can't use scented detergents and fabric softeners at home due to my husband's allergies to them. During the unpacking after returning from a trip to my parents' I've been known to smell and even cry over laundry that I know my mom has done.
A third factor which can make visits to one's parents difficult is having to relearn where everything is and where everything goes. This is true for blind and sighted alike, but blind people have special challenges in an environment which isn't our own. Which unrecognizable bottle is shampoo and which is conditioner in the shower? The 12-ounce cans in our fridge at home are our favorite sodas. But the cans in my parents' fridge could be several different kinds of pop or beer. Mom may have reorganized the cupboards or rearranged the furniture from the way I remember. Where am I to put the bags of dog deposits again? Where do I put my dog's bowl of water, so she has access to it and it's not in anyone else's way? What about the bag of dog food and the feeding bowl?
Though it means extra packing, I find that bringing my own talking alarm clock, shampoo, and conditioner can result in needing to ask a few less questions. Bringing lots of reading material is helpful. That way when my parents want to sit quietly and read, I can, too. Having a bedroom as a mini environment which I can make my own helps immensely! It is one area of the house where if something is moved, the guilty party is most likely me. A cell phone for visits at my parents' is a must. That way I can make and receive calls when and where I want. My cell phone is also a connection to the outside world, which helps me to feel more in control and less trapped. If one is tech-savvy and can make the computer work, good for him/her.
When visiting my parents, I need to follow their rules at their house. There are certain areas outdoors where Mom and Dad don't want my dog to relieve herself. There are places where my parents would prefer that I groom her. Following their preferences at their house is just common courtesy. However, when it comes to how I conduct myself outside of their house, that is my own affair. Fortunately, my parents support my decision to use all of the tools for my independence. I know of some parents who will not let their blind adult children bring a cane or a dog guide when going to -- or even meeting outside -- the parents' home. These adult blind children are forced to revert back to a helpless state of once again depending on their parents for basic needs like going to the restroom. I am so grateful my parents have never tried to do anything like this. Because of the factors above, my visits home are seldom but enjoyable when they occur. These visits would not happen at all if there was a conversation in which my parents told me I'd have to choose between going with them or my independence.
Another thing for which I am grateful is that my parents made it perfectly clear that after college, I was not going to move back in with them. I was lucky enough to marry right after graduate school. Even if I hadn't, I knew that I would have been on my own.
I know there are blind adult children who have never been away from home except for maybe college. To the parents of this subset of blind adults, you aren't doing your children any favors by allowing them to live with you, collect Social Security, and mooch cooking, driving and cleaning services off you. What will happen when these parents pass away? How will these supposed adults go through the grieving process while keeping a roof over their heads, feeding and caring for themselves, and maintaining where they live? I've already admitted that I'm not Ms. Housekeeper, and I know I'd live very differently if my husband wasn't around. But I'd have some concept about how to get what I needed. My advice to these parents is to develop a time period of transition at home with the goal of having the blind adult move into his/her own place. Parental assistance should gradually be reduced both at home and again after the move. This way, when the inevitable happens, it won't be such a shock.
Sometimes the worst in life happens to blind and sighted adult children alike, and they are forced to move back in with their parents. Along with trying to retain an adult relationship, blind adult children have many of the same challenges I described when discussing visits. Only now, it's not just for a week. Tensions run high, and adult blind children find themselves reliving parts of their adolescence and mouthing off to their parents. They hear their parents say things like, "Don't get smart with me!" Ah, reliving the good old days! It's not a situation in which I'd want to find myself. But if I did, I'd definitely want to avoid as much conflict as possible by defining rules, rights, and responsibilities. It's more than just paying rent to keep the government happy. Adult blind children need to set and respect boundaries, and their parents need to do the same. I've heard of instances where parents open and read their adult blind child's mail without permission, including financial statements. Furthermore, some strong-arm or guilt their kids into managing personal affairs in the way the parents wish. If I say I have the right to privacy and set the ground rule that reading my mail without my permission isn't to happen, I'd better be responsible for finding my own trustworthy reader to assist me in taking care of my personal business.
Parents may come to resent having to do their adult blind children's laundry, taking responsibility for their meals, driving them around, and cleaning up after them. Especially if the living arrangement is permanent, provisions should be made to allow the blind adult to take responsibility for these things. This is going to take effort on both sides. Parents may need to have appliances labeled and accept the way their blind progeny performs an activity -- even if it's not exactly the way the parents would do it. At the same time, the blind adult needs to be willing to learn and take on some of these responsibilities. This includes helping pay for groceries and gas.
As with visiting, it's understandable that parents may want their adult children to agree to the house rules. However, what happens outside the house is none of the parents' business.
It's understandable that parents want to protect their children -- no matter how old they are. What parents see as protection could actually be hindrances to a blind person's independence. I know an adult blind child living at home who still lives by the rule "stranger danger" and will not talk to strangers. This can really be a problem when one needs assistance and no one familiar is around. I've spent time with a friend when her mom called her cell phone to see where she was and when she was going to be home. I've heard of other cases where the parents have almost arranged a marriage with a sighted person, because the parents thought it would be more convenient for their blind child. I have observed that another battleground can form when determining where the blind adult is to live once moved away from the parents' home. Cities can be terrible places, but parents forget that for blind people, they provide more opportunities to be independent. There are more transportation options, and transportation is more flexible and frequent. More employment opportunities are available, and there is a wider selection of people to choose as friends.
No matter where adult blind children choose to live, whom they choose to marry, or how they choose to spend their time and/or money, parents are no more responsible for their successes and failures than those of their sighted children. Perhaps an example will illustrate my point. I remember a time visiting my parents when my dog did not get me far enough from the edge of a sidewalk, and I fell off, turning my ankle. I know my mom felt badly about and responsible for what happened. I gently reminded her that my dog and I were responsible for what happened -- not her.
There's one area that I'm unsure how to address. Like all other adult children, I dread the time when the roles of parent and child will be reversed. I know blind people who have capably taken care of their parents as they grew older, but since I've admitted to not being Ms. Housekeeper, I may have to participate more in the decision-making and less in the hands-on aspects. I hope to find other articles about this phase of the relationship, because I suspect it has a few more twists and turns for the adult blind child caring for a parent. Meanwhile, I hope that what I've shared here will be of help to both adult blind children and their parents.
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