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.
I think I’d like your mom a lot! What you’ve offered here is so helpful to those just starting the journey. My daughters, during their school years, were only dealing with the hearing-impairment part of Usher Syndrome, but the advice your mom offers is so critical for all families with disabilities, especially in terms of communicating with the child to understand THEIR needs, communicating that to teachers and other educators, and most importantly, teaching the children to advocate for themselves. Bravo!
Thanks, Louise. I think I like you as well! 🙂 I wish we would have had a mentor to ‘walk’ us through the journey. There were so many unknowns. Each child is so unique and one never knows what tips and advice will help each one. One time, after they were adults, I asked Jenelle for tips and she responded, “Patience, Mom. That’s all we need.” I took that to mean to slow down and take time with each interaction. Good advice for anyone, VIP or not!
Good job writing it, Jenelle.
HI. Your blog was mentioned on ‘The RP Family’ FB site so I clicked over. I laughed and cried as I read your family blog from start to finish. My son was diagnosed 2 years ago at age 4 by the notorious Dr. Fishman as well. Thanks for the words of wisdom. You offer exactly what I need to know to be the best advocate and mom I can be for my beautiful boy. To be able to read your trials and tribulations are so very helpful. We have gotten lucky enough to have a fabulous vision itinerant who follows my lead when need be and I have joined the PTO to keep me completely involved in school happenings. My goal is to advocate as often as needed until he is old enough to be able to speak up for himself. I loved your blog about your teacher with open arms and found your blog on hiking very helpful as we are an outdoor family. Shortly after diagnosed, I asked his ped. opthomologist that Dr. Fishman recommended (who, by the way, I just adore) what we could do for him to be most helpful. Thinking she would say ‘auditory toys’ or ‘consentrate on his other equally important senses’, she simply smiled warmly and said “the best you could do for this wonderful child is see it all-from the clouds in the sky to ants crawling on the ground. If you can afford vacations, take them.” So, we took our next tax return and bought a 1987 RV and that is exactly what we have been doing ever since. 🙂 I look forward to more insightful postings!
Lorie- Thank you for reading our blog and for sharing your family’s story. Your son is very lucky to have such active and encouraging parents. And I love that we have Dr. Fishman in common! Your RV trips sound like so much fun – fabulous idea. I have a lot of fond memories of family vacations as a child. And as an adult, I have visited so many places – South America, Italy, Hawaii, and Mexico, and have really enjoyed seeing all these amazing places have to offer. Your son has so much to look forward to! Please let us know if there are any other topics that we haven’t covered that you are curious about, or if you have any questions down the road, please do not hesitate to email me jenlandgraf@msn.com
Best,
Jenelle
I’m curious, who is the pediatric opthomologist you are referencing, Lorie? By any chance is it Dr. Jennifer Galvin? We wanted to see Dr. Fishman and I went through 3 weeks of fighting everyday with insurance! In the end I won, but not without the help of Dr. Galvin, who doesn’t even know our family!!!!! I now want to switch over to her, despite the long drive from the northwest suburbs, just because she is amazing!
Amy
My husband has RP. He became legally blind at the age of 34. He is now 60 and is retired because of his eyesight.
Our daughter is 21. She has recently been complaining of night blindness.
She does NOT want to be tested to see if she has RP. She doesn’t want to know, at least not now. She is a junior in college and hopes to become a K9 police officer. She said if she is diagnosed with RP that it will affect her career choice. That if she doesn’t know the dx she won’t have to lie on her applications. I don’t know what advice to give her. Is it better not to know, since there are no treatments? Should she wait to be tested until her career path is established.
Thank you.
Hello Kathleen, This is a very difficult question to respond to. My gut response is that it is better for her to know the truth as soon as possible. Even if she does not report it on her applications, the truth will eventually show up during training and work if she does in fact have RP. I can certainly understand why she does not want to get tested, but I think that it will be harder on her in the long run if she chooses a career path that relies so heavily on good vision. It is much easier to change careers while still in college. But as a mother, I know I would want to encourage my child to follow her dreams, so this is a very delicate situation.
Did anyone else in your husband’s family have RP or is he the first that you know of? Your husband could probably get tested to see if he has the x-linked dominant form of RP.
Although there is currently no cure for RP, there are still a number of things people with RP, especially in the early stages, can do to minimize degeneration, such as Vitamin A, Omega-3 (lots of press on this recently – let me know if you need some links), acupuncture, herbs, etc. Even if she chooses not to get tested, I would encourage her to take an active approach to maintaining healthy vision as early as possible.
Please let me know how it goes – wishing all the best to you and your family.
Jenelle
Hi Jenelle,
I think she would legally have to report it on her applications. She is head strong at this point in time to NOT get tested. And I hope to God she doesnt have it.
My husband is one of 7 boys. 5 have RP and are legally blind. No grandchildren (14 of them)have RP. My husband’s parents refused to get tested when all the brothers were diagnosed in their late teens, early twenties.. They just plain refused to be tested. For whatever reason. They are both deceased. So we will never know. I believe it was “X-linked”, formerly known as sex-linked From what I have read, women who carry the gene can only pass on to their sons.. “In families with the X-linked type, only males are affected, while females carry the genetic trait but do not experience serious vision loss”.
I have read about the Vitamin A, but the very high doses can cause kidney problems.
All of my husbands brothers have handled their RP very differently. Some very pro-active, some very depressed. My husband is more on the depressed side. Although he is not really depressed, but he does nothing to make his life more “full”. He keeps busy around the house. I work full time and he does a lot of the house chores, which I am greatful for. But he has no life, whatsoever, outside the house. I have been trying to get him to volunteer somewhere, to keep busy, to get out of the house, to be around people, but he refuses. He is 60 now, and set in his ways, so doubt I can change him in any way.
Thank you.
Kathleen
It have handled his blindness well, I think.
Thank you again for sharing, Kathleen. Each individual deals with RP in their own way, and what works for one person may not appeal to another person, and it sounds like that is certainly the case with your husband and his brothers. Glad to hear that your husband does so much around the house, but it sounds like he needs a hobby or volunteer job or something to get him out of the house more. It’s difficult b/c there’s nothing you can really do to motivate another person, especially when they are set in their ways like you said.
I really hope your daughter does not have RP – just remember that if she has it, she can still lead a very full life. I have met so many amazing people with RP who don’t let it rule their life or stop them from pursuing their dreams.
I have heard about liver damage from high doses of vitamin A, so that is something to monitor. A diet rich in Omega-3 can also help a lot according to research, and at least that does not damage any organs.
All the best to your family, Kathleen. Please let us know if there are any questions/comments you have for us in the future, or any topics you’d like us to write about that you would find helpful/interesting in dealing with the way RP affects your family.
Jenelle
Hi Kathleen,
I actually have a friend who is my age and has not gotten tested for RP even though her mom and grandmother have it. She, to my knowledge, has not noticed any vision difficulties, though she has said that she thinks RP may be headed her way someday. I think she is just trying to live in the present and take things day-to-day, which really works for her life at this point. I do think there will come a point where she will want to know, but this is just where she is at right now, and it sounds like that’s where your daughter it at as well. It does concern me, though, that your daughter is already noticing night blindness… I just think that it could be even more difficult losing vision after going through all of the hard work to become a police offer only to have to give it up at an early stage in her career. On the other hand, if she never follows her dreams, she could regret that as well. Perhaps there are other criminal justice-related careers that she could easily transition into from a police officer if she were to lose vision in the future. And in that case, maybe she could wait to get tested until she is established as a police officer and then figure out a transition from there, if and when she would need to make a change.
Like Jenelle said, there are some preventative measures she can take, such as vitamin A, that she can begin doing whether she chooses to find out or not.
Does your husband have a strong opinion about this decision?
Thanks for writing, and please keep up posted.
Joy
Hi Joy,
My husbands opinion is that she should NOT be tested. He does wish he never knew at such an early age.
Kathleen