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What I Shared with a Parent who Didn’t Know Where to Start

I have a child who is blind or visually impaired and I don't know what to do! Find out how to get started and where you can get help with these ideas and resources for parents and families

This entry is part 2 of 21 in the series Dots for Families
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L. Penny Rosenblum, Ph.D.
The University of Arizona

baby looking up at womanAs a professor who prepares teachers of students with visual impairments (TVIs) and as a person with low vision (I don’t see well enough to drive), I often get contacted by parents, grandparents, or others who are struggling with where to start with their child who has a visual impairment.  Sometimes they are truly beginning the journey, but more often they are feeling that they are not “connected” with their child’s educational team.  They may be feeling that their child needs more than what is being done at school but they aren’t even sure what that would entail.  After a recent call with a parent of a young elementary age student experiencing a significant decrease in vision, I sat down and wrote her an email with some ideas.  Perhaps these will be helpful to another parent, so with little editing I am sharing them here.

Your child is lucky to have a parent who will go the extra mile to get her what she needs.  Below are some ideas:

  1. A good general web site for you to visit and potentially join the discussion boards on is FamilyConnect, which has some good articles (Go to GRADE SCHOOLERS) and look especially under EDUCATION and FAMILY LIFE)
  2. A couple of key terms in the field that you should fully understand are:
    1. Functional Vision Assessment (FVA): An FVA is an assessment done by the teacher of students with visual impairment to determine what the child is seeing, what modifications and accommodations the child needs to maximize the vision she has and what instruction she needs.  It sounds like your daughter has had a significant vision change so requesting a FVA would be good.  Be sure the TVI goes over this with you and other team members and don’t be afraid to ask questions.
    2. Learning Media Assessment (LMA): This assessment looks at how your child accesses information (visually, tactually, auditorially) for different tasks.  It looks to see what is her primary way of getting information and what is her secondary way.  Data is also taking on her reading speed, comprehension, and tools she uses to do literacy tasks.  Sometimes a child who is a print reader has to work so hard at print efficiency that braille presents as a good option for the child to begin to learn.  Again, ask for this assessment to be done and for the results to be reviewed with you and the other team members.  See also: Learning Media Assessment
    3. Orientation and Mobility (O&M) assessment: A trained O&M instructor looks at how a child travels indoors and outdoors in both familiar and not familiar environments.  Recommendations are made for modifications the child can use, tools, and travel skills to teach.  If your child is bumping into things, tripping, etc. an O&M evaluation would be valuable.  Again, be sure that the results are shared and that you understand the information presented and what the plan is if your child has needs in this area.
    4. Expanded Core Curriculum (ECC): The ECC is a set of skills that are needed by students with visual impairments.  These include learning to use senses efficiently, O&M, technology, independent living skills, social skills, recreation & leisure skills etc.  For this term and the three above you can do some reading on FamilyConnect (type each into the search field).  You might want to ask the TVI to do some evaluation in each area of the ECC in which you have concerns.  Your child needs instruction in academics but to be a well-rounded independent adult she needs to have skills in all 9 areas of the ECC.  It is important that your educational team look at these areas each time you meet.  Editor’s note:  See also: ECC.
  3. Look for summer/weekend/after school programs where children with visual impairments come together.  I’d encourage you to get your child involved so she has an opportunity to meet other children who are visually impaired and who can be role models for her.  When a child is the only one at school with a visual impairment it is not uncommon to feel isolated or “different”.  Being around others who also have visual impairments can give your child opportunities to share experiences and learn from others.
  4. There are two national parent organizationsNAPVI and NOPBC.  You can contact one or both to ask for information and to make connections with other parents who have children of a similar age to your child.  Both have several publications and have conference nationally as well.
  5. You might get some ideas of tools that can help your child with some of his/her daily living tasks and recreation & leisure tasks by browsing the web sites of companies such as LS&S, MaxiAids and Independent Living Aids.
  6. Hadley School for the Blind offers a variety of courses for parents.  These are free of charge.  They also have a series of recorded seminars that might interest you.  Topics are broad.  Their web site is http://www.hadley.edu/ and they are a wonderful resource for parents.
  7.  Perkins has just launched a very comprehensive site called Perkins eLearningwww.Perkinselearning.org on a wide variety of topics  (There is a big emphasis on literacy and also on children with multiple disabilities.).
  8. Icon_bookshareYour child may benefit from receiving books on audio for school and/or recreation.  Two sources to check out are the National Library Services http://www.loc.gov/nls/ and Bookshare.org.

I hope I have given you some ideas and some places to go for information.  Having a team meeting to discuss your concerns and request updated assessments would be a good place to start.

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