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• RP kid on Long Island
• Posted: 2008-03-10 23:31:39 By Helaine K
• Hi - my son is 7 and was recently diagnosed with RP. We did not tell him yet. I'm sure there are parents with young children with this disease and I was wondering how they are handling it in terms of what they are telling the kids. Also, we live on Long Island and would love to talk to some parents who have children with RP - we could use the support. I met wonderful people at the FFB seminar last month and I am so grateful! Thank you!
  
  Helaine

• Re: RP kid on Long Island
• Posted: 2008-03-11 09:55:10 By Darran Z
• Helaine,
  
  I was diagnosed when I was 6. My parents didn't hide it from me. Chances are, your son already knows something is not right. He would already know he can't see in the dark and likely pick up that that is not normal if others can see in the dark.
  
  I'm a strong beleiver in parents informing their children because of this reason. While they may not know the diagnosis, they do know they have limitations. It makes no sense to keep something from a child that they already are aware of. Does it?
  
  It is also equally important not to overshadow or overprotect a child. Let them live life as normal as possible. I grew up with a normal life did everything a child dreamed up including the ability to drive for 10 years (and without incident or tickets I might add!).
  
  What your crucial point is now is getting the school to accomodate for your son. Ensuring he has all the necessary resources to succeed.
  
  Darran

• Re: Re: RP kid on Long Island
• Posted: 2008-03-12 18:35:44 By Helaine K
• Hi Darran - thank you so much for your quick response to my questions. I kind of thought that we should tell my son that he has RP because he does know that he has a problem in the dark and we have been seeing a lot of eye doctors these days. His diagnosis four weeks ago was a total shock to us so this RP stuff has been really hard to digest. I think once my husband and I can talk to him about it without crying we will tell him what is going on. Thank you for the great advice - would you mind telling me what you do for a living and how old you are? I am curious as to what careers are out there for people with vision problems. I know now that you can be the governer of New York!!! Take care - Helaine

• Re: Re: Re: RP kid on Long Island
• Posted: 2008-03-12 18:59:41 By Darran Z
• Hi Helaine,
  
  Yes, someone with visual impairment can literally do anything they want. There are blind lawyers, CPAs, and as you know, Govenors. In Maryland, the Lt. Govenor there is also visually impaired (or she was).
  
  Remember what is "normal" for you and your hubby may not define as "normal" for your son. We grow up with RP and that is "normal" for us. The best way to beat this, in my opinion, is to be well educated about the disease and learn about all the resources available to help someone remain independant. That may also include learning Braille, mobility training (with a white cane or eventual with a guide dog) to other things.
  
  For me, my challenge is a little different because I have RP as part of Usher Syndrome (I'm profoundly deaf).
  
  I have a background in Psychology and hope to continue my education to be a licensed therapist. I have taken a step back so I can relearn Braille before continuing my Grad Studies. But I'm currently "Mr. Mom" raising three children and letting my wife puruse her career interests in pharmacy. Once she is done, I should be quite Braille literate that I will return to school to complete my studies.
  
  One thing to keep in mind is while your son may have RP, in many cases, someone with RP do not go completely blind. They may have some useful vision but would require some assistance through assistive technology and other resources that are out there.
  
  Darran

• Re: RP kid on Long Island
• Posted: 2008-03-11 13:39:32 By Christina K
• Helaine,
  My name is Christina. I have RP, as do my two daughters. I knew when I was in grade school. Although I knew that I had it, that was pretty much the extent, my parents didn't make a big deal of it. I know that part of that was because they had no idea how much vision loss I had at the time, the other part I believe was because they wanted me to have a , "normal life". Like many other people, I did just that. I drove up until 3 years ago.
  My daughters are doing great! Shelbie, just turned 14. She has lost all but 20 degrees of her peripheral vision. Madison, will be 10 in August. She currently has 40 degrees. They are both very active and very different! Shelbie doesn't want to be caught dead with a cane and Maddy can't wait to get one.
  As far as school goes, you have to be the voice for your child. We found out the hard way, if you don't tell them they don't know. We were blessed however, to be in a good school district, and even though our kids go to a parochial school, the school district works very closely with them.
  I think that is important for the kids to know but, let them try everything, as long as it won't put them in harms way. It will help them understand why they can't get the same results from certain things, even though they try as hard or harder than some of the sighted children.
  My best advice is to work closely with the school and all of the support agencies that you can.
  I hope things work out well for you and your family!
  Christina
  

• Re: Re: RP kid on Long Island
• Posted: 2008-03-12 18:45:43 By Helaine K
• Hi Christina - thank you so much for responding to my questions and I am grateful to you for sharing your story about your daughters. We found out our son had RP four weeks ago so this is all new to us - I was adopted so I do not have any family history and my husbands family is RP free - so this has been some shock. I always knew I was adopted even though I was too young to understand the concept of what it really meant. So, I do agree with you and with Darran - we will tell him he has RP and in time he will learn to understand what is happening to him. Thanks again, Helaine

• Re: RP kid on Long Island
• Posted: 2008-03-13 10:34:20 By Zane B
• Helaine
  
  I was diagnosed with RP around the age of 8. Some forms of RP progress faster than others. Letting him know will give him a start on loearning to cope with the loss. He can achieve much in life and find joy in each day. RP or no no RP. It is all in the approach.
  
  I have had much success in life. RP has affected it but it has not slowed me down much. I work full time, raised 3 kidos who are successful, completed too darn much education, and still hunt with assistance each year. The focus is what can be done and not focusing on what might be lost. Each person in life has limitations. Some have a few more than others. It is how each person approaches the limitations that make the difference.
  
  Find a smile on your path today
  zane

• Re: Re: RP kid on Long Island
• Posted: 2008-03-13 19:44:19 By Helaine K
• Hi Zane,
  
  Thank you for your response to my question. It has been very helpful to hear from you and everyone else who has RP. I am learning that RP might be harder for me to deal with than my son. He is going to be ok, he's going to learn to live his life to the fullest, he's a great little boy who just might do some amazing things but as his mom I will always feel sad for his loss. Maybe that may change with time but for now we are very sad.
  
  Helaine

• Re: RP kid on Long Island
• Posted: 2008-03-14 23:51:04 By Cristy W
• I am a 33 year old woamn with RP and hearing impaired. I have always led a normal life. Started wearing hearing aids at 4-5 years old. I grew up like any other child, went to a normal school and etc. Learned that I had RP in my mid 20s. Probably had it long before it was diagnosed. I have an 8 year old son and work full time as an office manager with a federal agency. I graduated from college with honors. I have learned that everyone progresses differently with RP but from my experience I only notice it the most at night or when I change from the bright sun and enter a dim lite room. I think your son can be anything he wants and most importantly encourage him to be all he can be. Just because someone has a disablity doesn't make them disabled, it just makes them special and he just will have to work harder at it.