Rare Disorders  
Linda Blevins, Division Director
Vol. 10, Issue 2, p. 16-18
  Reprinted with the permission of The MAGIC Foundation
1327 N. Harlem Avenue, Oak Park, IL 60302-1376
1 (800) 3 MAGIC 3
(708) 383-0808 Fax: (708) 383-0899
E-Mail: mary@magicfoundation.org

     In this segment of the newsletter I cover some issues on visual processing. When you have a child that has disabilities, it is sometimes challenging to "get all the bases covered". Such is the case with Jordan and his vision.
     Jordan excels physically and he swims, roller blades, hops and climbs all over the jungle gym, (thanks to GH), still he is lagging in his academic skills. Skills such as tracing, drawing, color, cutting and letter identification have been very slow in developing. It requires enormous concentration and energy for Jordan to focus his eyes and manipulate the muscles in his eyes and maintain the concentration to execute the close, fine motor control activities required for school. So much energy is spent on concentrating his eyes, that very little energy is left over for actual learning. This contributes to a shorter attention span and a higher level of distractibility and fatigue.
     Jordan's vision is an area we have spent much energy and money managing. We are currently on our seventh eye doctor. The first one did not even think Jordan needed glasses. He actually had diopters of 5 and 6 in his eyes. Jordan has estopia (one eye turning in) which had given him double vision and he was probably seeing one image large and the other image small. The correct prescription has straightened his eye and improved his vision. Better vision has lead to improved gross motor controls.
     Jordan was consistently closing one eye. OBVIOUSLY THERE WAS A PROBLEM. Appointments with other eye professionals yielded no additional information except to say, "Jordan was visually delayed". Finally, in Kingman, Arizona our eye doctor says that Jordan needs bifocals to facilitate his eyes focusing for "near" work. He has not even had his bifocals a month, and there have been improvements in his deskwork.
     We have scheduled an IEP to force the teachers to accommodate Jordan' s vision. I will be asking for larger print on his papers, moving the papers and materials "out" so he doesn't have to concentrate for "near" focusing, put him in a desk that is "sized" for him, use large manipulatives to teach math, use large flash cards to teach the alphabet, force physical activity breaks to relieve eye strain and build "motor memory" (as you build motor memory you build visual memory), educate the educators on the importance of visual skills by requiring them to read on the topic. My motherly instinct told me there was still something wrong with Jordan's visual skills. The experts were telling me it's Jordan's Down syndrome and my expectations are too high for his academic progress. Still my motherly instincts told me something was wrong with his visual skills. Persistence and seven eye doctors later, Jordan has bifocals which have improved his visual skills. This summer I am taking Jordan to do an intensive visual therapy at Achievers Unlimited in Wisconsin. We anticipate between the therapy and the bifocals Jordan will achieve reading readiness. Thank God for motherly instinct.

     Families, please fill out your networking forms. Signed networking forms allow you and other MAGIC families to talk with each other. Valuable information is available from other families who are in the same situation as you!

     Children with disabilities, disorders and behavioral problems often have a common thread, vision processing difficulties. Vision processing difficulties are often over looked and poorly understood by the educational institutions, ophthalmologist and optometrists. An organization who aids children in visual training, school education and school visual screenings is Achiever's Unlimited in Fond du Luc, Wisconsin. The following information is from the book "Vision Development: 4-5, Kindergarten Readiness."
     Eighty percent of a person's learning goes in visually. If the eyes are not functioning properly, a child's learning process becomes fraught with frustration and anxiety. Achievers Unlimited offers a four-part checklist as an evaluation of possible physical signs, for the preschooler, that may indicate a vision processing disorder. All children have behaviors and activities that vary. Check only the signs that CONSISTENTLY OCCUR.

     SIGHT: Often the physical appearance of the eyes can be an indicator of a problem.

     COORDINATION SIGNS: Movement is the prerequisite for academic success. Your child must move to learn about her body and environment. This does not mean constant movement but rather exploration of his world. Basic vision skills are two-eyed (binocular) skills that serve as a springboard for consistent behavior and performance.      BEHAVIORAL SIGNS: The following warning sign indicate your child's eyes are not learning to work together as a team. As a result, his visual system cannot direct his body to successfully carry out tasks.      POSTURE: Incorrect posture contributes to many visual problems including focusing difficulty, poor eye coordination, difficulty in visual perception, poor visual acuity and physical problems that include backache, stress and fatigue. For more information or to order books and materials Achievers Unlimited can be contacted at 920-924-9898. This particular checklist is for preschoolers. Other checklists are available for school age children. Achievers Unlimited is contracted to perform many of the visual screenings for local school districts and to provide visual training to needful students. They have achieved such success with at-risk children and children with learning disabilities that the schools work very close with Achievers Unlimited.

     On January 19th, we met with Dr. Levy at Rush Hospital in Chicago for Anthony's quarterly endocrinology appointment. The results were most satisfying.
     Anthony started on GH on February 14th of last year (at the age of 3 years, 8 months) and was in the lowest 1% for height and lowest 10% for weight for his age. This is common for children with Down syndrome. Currently, he has advanced to the 24th percentile for height (having grown 6 inches) and the 50th percentile for weight (having gone from 32 lbs. to 39 lbs.) in 11 months. These rankings are on the height/weight chart for non-DS children. In addition, his muscle tone and body shape have improved.
     As you might well imagine, we are very please by Dr. Levy's management of our son's treatment which has been a most excellent synthesis of aggressive treatment and attentiveness.
     A. O., Ohio.

The convention is on July 22-25. It will take place at the Marriott Oak Brook Hotel in Oak Brook, Illinois. A variety of specialists will be attending. PLEASE MAKE SURE YOU NOTIFY ME, SO THE PROFESSIONALS WILL BE ABLE TO INCLUDE A SEGMENT ON YOUR CHILD'S DISORDER. Hope to see you!!!!

Hope to see many of you in July
Don't forget your personal stories

  Revised: June 22, 1999.