[blindkid] Haven - Visually impaired daughter

Kim Cunningham kim at gulfimagesphoto.com
Mon Sep 14 14:52:39 UTC 2009

I am forwarding the below email from a mother who needs help. Can someone with similar experiences please give her some guidance? This mother has not subscribed to blindkid yet, so please email her directly.
Kim Cunningham

--- On Thu, 9/10/09, Lori <balllori at hotmail.com> wrote:

From: Lori <balllori at hotmail.com>
Subject: Haven - Visually impaired daughter

#yiv1933032612 .hmmessage P
#yiv1933032612 {

Some of you on this email list know me well, some I met at the FOCUS meeting, some use to be her ECI and HISD teachers, and some are email addresses I have found on the internet. I would greatly appreciate it if you would take the time to, not only read this email, but forward it to someone that you may know that could shed some light on our situation regarding Haven. 
My name is Lori Thompson; I have a daughter named Haven that will be 5 years old in October. When Haven was born we noticed her left eye had a hazy look to it. I questioned it at the hospital and they said it looks like a cataract and to make an appointment with Texas Children’s Hospital to have it removed. When taking her to Texas Children’s we were told she had a developmental disorder of the eye called, Microphthalmia, which means small eye in her left eye. Her left eye never fully developed. Upon looking further the doctor said she also had optic nerve agenesis, which means she was born with NO optic nerves in either eye. Therefore she is blind and will always be blind for the rest of her life. Of course her father and I were devastated and had no idea what to do, where to turn, or who to talk to.  We felt so alone and lost neither one of us had ever been around someone that was blind or visually impaired. We have had many special
 people in Havens life since than to help her along the way. Many wonderful people from ECI and HISD came out to our home Havens first 3 years of her life for speech therapy, mobility, physical therapy, and  more. We were always praised by them for doing a good job with Haven and working with her. She started Halpin HISD when she was 3 years old in a VI class. She has done really well but we still have many challenges with Haven and we don't know what to do. 
Haven walks with assistance, holding our hands, she sing songs, she says many words, picks up her own food and cup, uses spoon with assistance, loves to be read too, loves to be in the pool, and loves to listen to music and dance. She has some really bad "melt downs" as I call them though.  Our communication is one of the issues, when she wants or needs something she doesn't know how to communicate to us, "mommy I want Water".  She will get on one word such as couch and scream it over and over while having a fit on the floor. We take her to the couch and she doesn’t want to be there either. If she is at the table she screams, slides of her chair into the floor, slaps her face and screams. Nothing we do or say calms her down. We have to wait till she is done with her melt down and try again. It is both frustrating for her and us because I want to give her what she needs but I don’t understand her and she doesn't know how to communicate to
 us.  If she is tired of walking she collapses and stiffens her legs up and screams. She has quite a temper when she is mad. 
I ask myself daily, will she learn to hold a conversation with me, will she interact with others, will she play with other kids, will she pick up toys and play with them, will she eat all on her own, will she walk with a cane, will she stop being so temperamental, if so, when???? Since her school year started her teachers are frustrated and are at a dead end. They ask ME, what to do and I have NO CLUE. I want her to be independent and learn but how can she learn when she has melt downs and refuses to participate? I am at a loss. Is there extra help out there for her? Please lead me in the right direction. 
Thank you so much, 

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