This is the first post to BEARZ View. This blog is being set up to share the adventures, good and bad that we will experience as my son enters Kindergarten this year. This is an amazing time of change and growth for all parents, but it comes with a few extra challenges when your child is blind. I'll begin by giving a little background. My son, who I will refer to as Bear to protect his privacy was born with a very rare genetic disorder called Norries Disease or Norries Syndrome. There is not a great deal of knowledge about Norries at this time. Studies are currently being done. If you google Dr. Katherine Sims and Norries, you will see some of the research that is being done as well as a more clinical explanation of Norries. If you are a parent of a child with Norries and you happened upon this Blog, there is a fantastic Internet Support group that includes parents of children with Norries as well as adult males with Norries. It is an amazing group of people who lean on and help each other out. E-mail me if you desire more information about that group.
As far as Bear goes, he has no vision and we do not think he has light perception. There is a definite possibility that he will also lose his hearing. We keep a check on it, but we do not dwell on it. Bear loves music and has terrific rhythm. He has an amazing sense of humor and a really interesting understanding of things.
I do not think there are many blogs that share the day to day nitty gritty of raising a blind child. I won't say that it is more difficult than raising a sighted child, but it is definitely different. There are things that come up and things that must be taught that a parent of a sighted child would never have to think about. I will be very honest and share the good and bad days as well as how I handle it as a parent. It is my hope that maybe I can help you and sometimes you can help me too. I hope that you will enjoy reading about Bearz View on the world
Blessings to you,
BEARZ Mom
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Karen,
ReplyDeleteWelcome to the world of blogging. I look forward to reading of your adventures. Maybe I'll learn a thing or two since you're about a year ahead of us.
And just in case you don't recognize my name from the Norrie's Group, my son Danny also has Norries. He is 4 years months old. We are preparing to start his last year of preschool in a couple of weeks.
Stella
Welcome Stella and Thanks so much. I really hope that it is going to beneficial and interesting to everyone who reads it.
ReplyDeleteI am really glad you made this blog. I also have a son with Norries. His name is Anthony he is 6 years old, he will be starting kindergarten this year. I hope that we will be able to exchange information with each other and help one another through out these next difficult schooling years.
ReplyDeleteBrenda
Welcome Brenda
ReplyDeleteI'm glad that you joined. I look forward to a mutually beneficial relationship. I would love to hear more about Anthony and his experiences. I've gotten a lot of good feedback so far, so I'm glad that I decided to do this blog too.
Hi Karen,
ReplyDeleteI found your blog via the Norries group. My daughter has FEVR, a related disorder, and is also totally blind. I'm really looking forward to following your writing here. This is my daughter's last year of preschool and we will be spending a lot of time preparing for Kindergarten next year! Can't wait to read about your experiences.
Warmly,
Bridie