Tag: advice:

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.