Tip #3: Provide Opportunities For Your Child To Play Sports
Sports may not be the first word that pops into your head when thinking of extra-curricular activities for a child with vision loss. While some traditional childhood sports like baseball and soccer may not be options for children with low vision, that does not mean they want to sit on the sidelines. Continue reading “The Importance of Sports: Advice for Parenting Children Who Are Blind or Visually Impaired Tip #3”
I hadn’t set foot in my high school since 1997, when I graduated (eeks, I feel ancient typing this!) That is, until 2 weeks ago when I heard they were putting on the play, “The Miracle Worker”. My 3rd-grader had read all about Helen Keller last year in 2nd grade, and she was fascinated with the story of Helen and her teacher, Annie, so my mother-in-law and I decided to take her and my niece to see it. I had also heard that there would be a blind actress in the play, making it even more authentic, and piquing my curiosity. Continue reading “Returning to High School….With a Cane”
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It was a typical night at the movies, except for one thing..
I could “see” the endearing Paddington Bear, with all of his slapstick British humor, thanks to audio descriptions at a nearby theater.
Audio Description is commentary and narration which guides the listener through the movie or play with concise, objective descriptions of new scenes, settings, costumes, body language, and “sight gags,” all slipped in between portions of dialogue or songs. Continue reading “Paddington: My First Accessible Movie”
People have always asked us whether we have ESP or any shared twin language. While for the most part, the answer is no, I did awake with strong stomach pains in the middle of the night without knowing that she was going into labor 2,000 miles away and sat straight up in bed the moment she had her second child, on the shared birthday of my older child. Beyond that, we have no known twin quirks. Continue reading “Twin Powers, Mud Pits and Guide Dogs”
Here is another wise guest post from our mom, Judy. She’s always been such a great example to us of being positive, and it’s amazing to see that she continues to challenge her own thinking, even her positivity. I often hear from friends how their parents seem so “stuck in their ways” and how many of them aren’t willing to work on personal growth or challenge themselves beyond a certain point, so it’s refreshing to see our mom model this.
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Have you ever experienced quick, flippant responses like “It’s all good!” or “Perfect!” after sharing a difficult circumstance with someone? It seems they are harmless comments as we respond affirmatively and positively. Generally, being positive is a very good thing to be. But, what if things are not at all good? What if someone is struggling? What happens when we don’t really listen and quickly jump to ‘Count your blessings,’ ‘Don’t worry, be happy,’ or ‘Think positive!’ Does it minimize what the person is experiencing? Continue reading “Mother Wisdom”
| “I thought about your blog the other day when Nathan came home from school and said he got hit in the face in gym class three times with basketballs. His glasses were broken and he had a substitute teacher that day, so he walked around with no glasses on with his friends sticking close by him. His one friend even had Nathan dictate his answers to him and wrote it out for him as the boxes were to small for Nathan to see and the teacher wasn’t there. Nathan, Mr. Positivity, came home and had his first meltdown over his vision, saying it was the worst day ever. Poor guy! He was so proud of himself, though, that he held it all together until he got home that day!” |
So I first started working on this post 2 weeks ago, but was only one sentence into it when my 5-year-old woke up vomiting. An hour later, my 22-month-old began vomiting, and thus began an entire night of fun. The next morning I got sick, and though it was a quick bug, I haven’t been able to get back in the swing of things since. It’s these kind of dreaded times as a parent that give me a newfound respect for my own parents and the long nights they spent cradling sick children and cleaning up puke. I don’t think I ever fully appreciated or even thought of these moments until I became a parent.
When my daughter turned 5 last March, I remember the thought dawning on me that she’s the age I was when I was diagnosed with RP. While I had always grown up thinking about how RP affected me personally, I had never stopped to think about it from my parents’ perspective. And based on the twinge of pain I feel even when watching her get a shot at the doctor’s, I had a hard time imagining being told that my little girl was losing her eyesight. I have no idea how I would react.
I remember my dad taking Jenelle and I to an eye specialist at age 5, trying to follow the big bird figurine that the doctor moved from side to side, and having countless tests performed. As I recall, my sister and I were not the most compliant little patients, and I can only now imagine what a stressful day that must have been for my father by himself (have you ever tried to place hard contacts in a little kid’s eyes before? Two kids?)). At the time, my mom was pregnant with girl #4 and chasing our 2-year-old sister around, and I’m sure the news my dad brought home after the visit was overwhelming for my mom. I have no idea how the conversation went or the thoughts that went through my mom’s head as my dad relayed the news from the doctor.
I think Jenelle and I, both now parents, began to wonder what it was like for my parents. So when we asked them to write a post from their perspective, I think that we were half-way expecting this long, emotional recollection. And we were both admittedly disappointed when we first read our mom’s article with educational advice to parents. While her post was probably much more helpful to parents of kids with RP (which was, in fairness to my mom, the whole point!), we selfishly wanted a new glimpse into our childhood. We wanted to know what I guess every adult kid wants to know: “What were you thinking and feeling as you raised me? And what did you think of me?” (okay, I don’t know if every adult wants to know that, but I did.)
The telephone conversations following my mom’s blog entry were difficult– I kept beating around the bush, trying to get more out of my mom– pressing her for more than she was able to say. I remember my mom’s voice suddenly breaking in one of those phone conversations and her saying, “I feel like you’re wanting me to feel something that I didn’t feel or that I somehow failed you as a parent.” I faltered for words, clumsily trying to reassure my mom that she was a wonderful parent (something she is always doing for me– encouraging me as a mom– and here I was stumbling to do the same.) The conversation ended fine, but I was still bothered by it over the next few days. And my mom was too. She ended up writing me an e-mail that really helped bring closure to our conversation, and here are some excerpts:
“When I said that I didn’t remember any disappointment, I meant for myself as a parent; I really never felt like I had been dealt a bad hand of cards. I choose to see the possibilities, not the disabilities. Yet, now that more blogs are being written and the memory locks are unlocked, I do remember many times of frustration, sadness, and even fear. I just didn’t want to admit it in my mind. I have hidden them so well all these years. It is a protective mode as a parent; protective of my emotions and protective and respectful of your process. It was difficult to talk to you both about it because you avoided it and were upset whenever we brought up anything to do with your vision impairment. Dad and I realize now that we should have and could have pushed harder to talk about it. I never wanted anything we said to convey overprotection, but fear did drive a lot of my actions or comments. I wanted all of life’s challenges and excitements for you, but feared them and then hid those feelings. It seems being a parent is also a lot like being an actor.
In your early years I remember wanting you to join in on family or friend volleyball games, Halloween trick-or-treating, and/or other activities, so that you would not feel left out. We told the family members not to discuss it, just to help you along. Then it turned out to be very difficult for you, but you had fun. You have a better memory for experiences, but I hope I have conveyed the maternal feelings.
And for all the things we did or did not do to support you in your vision impairment, we are so sorry. We had no guidance, only scientific talk from the doctor, and misguided learning disability talk from the school people. We did all that we knew to do, which wasn’t much, but we could have done more, I am sure of that. I do think you got a great education. Even without appropriate adaptations you thrived. College at SPU and further college endeavors was the ‘icing on the cake’ for you. You are excellent writers and do many things better than people with complete vision.”
I remember crying as I first read her words, and here I am crying again now as I reread them (if you’ve been following this blog long enough, you probably think of me as the sappy twin.)
Reading her words made me realize how hard we can be on our parents and how I hope my daughters will extend me grace someday when looking back on their childhoods. Parenting can be difficult and lonely, and we aren’t given a guidebook…. and we all do the best that we can.
I think one of the biggest gifts my mom gave me was actually hiding her fears from me as a child. I don’t think I would have been as confident or fearless if my mother had been one of those nervous, fearful moms who is always doting. Yes, because I”m a big proponent of counseling, I think that family counseling to help bring out at least some of these emotions as a family growing up would have been helpful, and I would recommend that to any family dealing with RP. But just allowing your kids– RP or not– to experience life fully, uninhibited by worry and fear, will allow them to do their best. And we’re all trying to do the best we can– as parents, kids, adult kids….. so a little grace here and there can also go a long way.
Yes, I am still alive and well in case you’re wondering why I haven’t posted in quite awhile. I am going to blame it on this busy season of parties, baking, shopping, sledding, and sneezing. As if it’s not bad enough that I’ve taken so long to post, I am not even writing this post by myself. This one has been in the making for quite some time, and it is a collaborative effort between Joy, myself, and our mom.
After receiving a lot of great comments and emails from parents of children with RP, Joy and I decided to create some blog posts that offer advice and encouragement to these parents and their children. We started by asking our parents for their perspective, which sparked a number of interesting discussions and emails. This process was really eye-opening for all of us, but more challenging than we expected. I think any time a family takes a trip down memory lane, it is normal to have different memories of the same events. Not to mention the fact that children process life events very differently from adults.
Now that Joy and I have children of our own, we are well aware of the fact that kids do not come with guidebooks. And while this post is intended to offer advice for parents who have children affected by RP, we recognize that each child is unique. There may be suggestions that are effective for one child, and yet not useful to another child. Especially given the spectrum of RP.
With that said, the biggest piece of advice we can offer you is to have on-going open communication wtih your child regarding their vision. While that might seem simple and easy to some, it can actually be a challenging process. Based on information we’ve read and experienced, children who grow up with disabilities or anything that makes them feel different than other kids, often feel a natural sense of shame and want to hide it.
As Joy and I have expressed in this blog, we often felt secretive about RP. Looking back, we appreciate the fact that our extended family didn’t make a big deal about our vision and just helped us (which we know now was what our parents sincerely requested of them), But it was talked about so little, that when it did come up, we felt awkward because we didn’t know how to respond. Even the sweet innocent comment of a younger cousin, “I’m sorry about your eyes” felt devastating to hear as children.
Our mother, Judy Derpack, has some more advice, relating specifically to education. In addition to being a parent of two children with RP, Judy has a degree in Early Childhood Education and many years of experience as both a classroom teacher and parent-educator:
“Here’s what I have gleaned and learned (but didn’t always do well): In all situations, look for adaptations. Your child does not want to be left out of anything (probably with the exception of PE class!) Be creative. Find a way to include them. Make your family, friends, and educational community aware of how they can help your child. Follow through to make sure adaptations are actually being followed. Lastly, and most important, YOU are your child’s best advocate! Don’t let pride, ignorance, or ineptness keep you from advocating for your child. Use your emotions and education to guide you as you advocate for your child. I am so darn proud of my daughters that I can’t even find the words to describe the feeling.”
Joy and I would like to tag on to our mom’s words of wisdom. Please also make sure to actually sit down and ask your child what they need. Some of the adaptations we received in school were really not helpful to us at all. RP is very different from many other visual impairments, so doing things like blowing up worksheets can actually make it worse for students with RP. Especially at the beginning stages of RP, there may be very few adaptations that your child really needs, besides the awareness of the teachers. Forcing adaptations that aren’t helpful to your child can make it even harder on your child (i.e. pushing books on tape when they really are fine reading on their own.)
Also, along with being included in the classroom, your child doesn’t want to stand out or be singled out, so find ways for the adaptations to be seamless and natural– not obvious and forced. This just adds stress to what is probably already a challenging school environment. Always check in with your child to see what is actually going on in the classroom and beyond. Teach them to be their own confident advocate so that you don’t have to do the talking for them. One of my biggest pet peaves to this day is when someone asks another person to assist me when I am standing right there.
As previously mentioned, this is the first post in what will be a series of blog entries about raising children with RP. We hope that it is helpful for families affected by RP, and we welcome your questions and comments. We also want to acknowledge our parents for their role in creating this series of posts. We know that sharing these feelings and revisiting these memories that have been tucked away was not easy, so Joy and I really appreciate their willingness to share with such humility and retrospect.
Not driving sucks. There is just no other way for me to put it. Sometimes I try to put a positive spin on it by pointing out the $$$ I save on car payments, gas, insurance, etc. Or I attempt to brag about how eco-friendly I am walking most places. And I try to feel thankful for the extra pounds I manage to shed from all that walking. While I am typically a “glass is half full” kind of gal, this subject is something that I cannot sugar-coat.
I found it somewhat amusing this past year when both my maternal and paternal grandmothers complained to me about having to take a break from driving. They both have their licenses back now, but each had to take several months off from driving due to some health issues. (neither health issues were vision-related) Both of these energetic grandmas are in their early 80’s and have never had to experience life without driving until recently. They both made comments to me like, “My family, friends, and neighbors have been so nice about offering me rides, but it just gets old after a while” and “I feel like I’ve lost so much of my independence from not being able to drive”. Both grandmas live far away from me, so they couldn’t see the smirk on my face while they were on the phone explaining to me how difficult life is without a driver’s license. It took them each about 10 minutes of complaining before I heard a pause on the phone, and then a “Oh….but you probably already know how that feels, right?” It’s funny because I don’t think that most people, even my dear sweet grandmothers, really think about what life is like not being able to drive unless they experience it for themselves.
My husband is so great about driving me places, my friends and family are constantly offering me rides, and I am truly thankful that the people in my life go out of their way for me. But just like my grandmothers pointed out – it gets old having to rely on other people. It’s not like my car is temporarily in the shop and I need extra help for a week. This is every day. I constantly need to strategize about who I am going to inconvenience next, and I am always on someone else’s schedule. There is so much coordinating involved, especially now that I am a mom. I shouldn’t complain too much considering I just have one child. Sometimes I feel dizzy just from listening to Joy describe all the coordinating she has to do just to get everyone in her household to where they need to be. “Ben has to be at work early, so friend A is going to pick Lucy up in the morning and take her to the playdate, and family B is going to pick Elliana and I up for the party mid-morning, and then Ben will meet us at the party at x time, and friend C will get Lucy and bring her to x spot so we can all head home”. Not to mention transferring car seats, baby gear, etc.
I often wish I could just hop in the car and go somewhere – anywhere – by myself. I want to get in the car with Joy, and just have it be the two of us. I want to make an uncomplicated trip to the store with my daughter. But instead I feel like this “eternal pre-teen” having to ask my mom to pick me up from the mall.
Despite all my complaints about not driving, I am often relieved not to have this added stress in my life. The driving issue is a major topic of discussion amongst the RP community. There are a lot of people with visual impairments still driving, and many struggling with whether or not they should still be driving. From my understanding, the type of visual tests that most states require at the DMV typically only test central vision and side vision. So, a person with low visual fields could still pass a driver’s test in many states. This often leaves the decision of whether to continue driving up to the individual. And of course, most people do not want to give up this independence. Unfortunately, I have come across several devastating stories of people with RP causing fatal car accidents. I think about how awful I feel when my vision causes me to accidentally stumble into someone, and so I can only imagine the horror that would encompass my entire being if it was me causing the fatality. I recently heard about a woman with RP who thought she was still okay to drive, but did not see her neighbor’s daughter sitting on the curb one day. This woman took away that child’s life, and ended up taking her own life as well. I considered not including this story as it is very disturbing and probably a terrible way to conclude a post. But I think it serves as an important reminder that although driving comes with lots of benefits, it is a huge responsibility.
I recently saw a completely true and hilarious phrase about RP on facebook (Thanks to Roberta on the “Usher Me In” FB page, who saw it on another RP page!) It said that RP is “being able to see a pencil on the floor across the room but tripping over an elephant on the way to pick it up.” (honestly, if whoever originally said that is reading this, give yourself credit here because you nailed it!)
People are sometimes bewildered by the things I can– and can’t– see. I remember a friend once looking for her car keys for an hour, and I ended up finding them within 5 minutes of looking! On the other hand, I once thought a picture hook on the wall was a giant spider, and my dad looked completely frightened when I mentioned it– not for fear from the “bug” but because he realized how bad my vision must be. I know we’ve written several posts about embarrassing incidents, which are easy to recall because they’re so numerous, but I was reminded today that there are those times I see things– and that’s something worth celebrating once in awhile. While walking my toddler back from the park today, I happened to glance up and see a woman walking by with her golden retriever. I kept walking, but then on a whim glanced back across the street behind me and realized that she was also pulling a wagon and possibly waving at me. I then realized that it was someone I had met in our neighborhood a couple times. I immediately remembered her and her little boy’s name and yelled “Oh hi, sorry– I didn’t recognize you at first! Hi Anna! Hi Devan!”She called back across the street, “That’s okay, I look different with my sunglasses on!” which was a very generous comment considering she really looked pretty much the same, and considering most people would have recognized her immediately if they had met her son and dog before, as I had. She then went on her way and I went on mine, feeling very proud that I was able to both spot her across the street and call out her name and everything. That probably seems like a silly thing to be proud of, but I know that there have been dozens of times I have walked past people I know, completely oblivious that they are even there since they’re outside of my line of vision, only to be told later that I “blew them off” or “seemed really out of it”. I once shook a friend’s hand at church during the “greeting time” (which I always dread because I never know where people’s hands are to shake!) and apparently completely ignored the person’s wife who was sitting directly next to him, only to be told about it 2 weeks later by yet another friend!
And I’m sure there have been many other times I have unknowingly ignored someone without even being told about it afterwards. (That actually used to happen a lot in college, but fortunately since my sister and I attended the same university, people just thought that it was the twin they didn’t really know who didn’t wave to them!) So the fact that today I happened to look straight in her direction at just the right moment and call across the street made me smile to myself. I felt like that friendly, PTA-type mom who knows everyone’s name in the neighborhood.
This “successful greeting” reminded me of a time in 6th grade PE when I somehow managed to catch a football (yes, you may have read my sister and I’s blogs about flying objects and how we NEVER catch or hit anything) My hands must have just been at the exact right place at the right time because the football literally landed right in them, and i actually held on to the ball. I was so ecstatic that I quickly began running to make a touchdown…. and DID…. for the other team. I hadn’t really ever paid attention to the rules or touchdown line before because I figured I would never have possession of the ball, so all I knew was that I was supposed to run. But it actually didn’t matter to me that I ran the wrong way; I remember feeling proud the entire day, as if I had scored the winning touchdown at the Super Bowl or something, because for once the ball did not fly past me or hit me.
So today I just want to celebrate the small things. I forget about the word gratitude in my daily life. I grumble in my head about my husband working weekends and feeling stuck at home. I completely forget to be thankful that he is home many mornings, gets to eat breakfast with us and help get the kids ready. I forget to be thankful for amazing friends and family who offer to drive my kids and me places. I forget to be thankful for the things that I can see– those vibrant and beautiful colors that I get frustrated about when I confuse them and am corrected by my 5-year-old “No, mommy, that’s brown, not purple!” Who cares if I mix them up?! At least I can see them!
Regardless of where your vision is at today, find a good catch in your life – something small that makes you feel proud and thankful. And smile about it.
