Parents report noticing clumsiness and mobility problems in dim light and the dark. They notice that their child has bicycle accidents and bumps into people frequently. Sometimes teachers notice that the child is missing signed communication and friends trying to get their attention. Teachers and parents may try at first to dismiss what they notice or they may discuss what they have seen with the child's primary care doctor who may then reassure parents that nothing is wrong.
Many parents report very stressful experiences in dealing with the medical profession during the process of trying to determine what is wrong with their child.
Some children are mis-diagnosed or the parent's perceptions are not taken seriously. When they are finally given an accurate diagnosis, it is often brusque and without further referral or connection to support services.
If it is suspected, a family should first consult with an ophthalmologist. If possible, the child should also be seen by a retina specialist. The diagnosis is made by examination and an electroretinogram. In addition, families should also be referred to a geneticist who has knowledge and understanding of all the related issues and is especially trained to work with families.
A diagnosis of Usher syndrome is always a terrible shock, even when there has been a suspicion that something is wrong. The shock may be complicated by being given little or no information, or wrong information and no helpful referrals. Most parents have never heard of Usher syndrome before.
Parents may have feelings of depression, anxiety and a feeling of confusion. In most cases, the parents must start the search for information on their own. Typically, the next few months are extremely difficult. Parents report not knowing anyone who can offer them support, which often results in their withdrawal from friends and family members. Despite being told that Usher syndrome is genetic, they don't understand that with Usher syndrome both parents must be carriers for the child to have it and they sometimes blame each other for what has happened.
At first, there may be little advice and support for the parents. Some parents have been told there was no one who could help them only to find, after many phone calls and letters, that this is not true. It invariably takes time to find out about local services for children who are deaf-blind, although states do have programs. (Programs and services are listed in Resources)
Finding other parents of children with Usher syndrome also takes time, but once found, they can be a tremendous source of help and support. Connecting with parents of children of varying ages can also provide needed information about Usher syndrome through the life cycle.
One immediate issue is what to tell the child when Usher syndrome is first diagnosed. Some professionals wrongly advise parents to tell the child that he or she will probably be blind. This is not what should be done. Parents should not feel they must immediately give a prognosis to their child. They should allow themselves time to begin to integrate what is happening. They will need time to progress in their own understanding and to gather the necessary supports.
Young children won't really grasp the information. Teens who can think in abstract terms may be totally overwhelmed by the diagnosis. Every child must be given information in a developmentally appropriate and functional way. One might explain to younger students that they will need to be very careful when crossing a street or riding a bicycle because they have an eye problem that does not allow them to see well to the sides or up or down. This kind of description avoids the use of words like peripheral which they may not fully understand. Parents can also tell their children that if they have difficulty seeing in the dark, Mom or Dad will hold their hand or offer an arm if they need it. This approach will help prevent children from becoming marooned in a spot without help.
Parents and professionals should anticipate that explanations of Usher syndrome to a child or adolescent may have to occur multiple times. Each explanation provides an opportunity to present a bit more information than the last time. In addition, the genetic information and ideas for experimental treatment are changing rapidly. Information that is valid today may change tomorrow. It is important for parents and professionals to stay current.
Parents should be aware that their children may be depressed about their decreasing vision and that it is better to talk about these feelings and not ignore them. Parents should also be aware that many children and adolescents with Usher syndrome feel responsible for parental grief and pain even though this may not seem logical to the parent.
Parents can encourage children to express their feelings. It helps to assure the child that, although parents may be concerned or even upset, the child did not cause this to happen. Parents, however, cannot and should not share all their feelings and concerns with the child. Parent and child can both be worried about the same issue, but boundaries must be maintained.
If the student is depressed, the parents should listen and offer help. If any thoughts or attempts of suicide surface, parents should seek professional help from a counselor who knows about deaf-blindness. The counselor should understand that having Usher syndrome is not the same as being deaf and sighted, and is not the same as being hearing and blind. If American Sign Language is the child's preferred mode of communication, the counselor should also be able to communicate in that language.
from Ilene Miner, CSW & Joe Cioffi, M. Ed.: Usher Syndrome in the School Setting
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Original address of this page:
www.tr.wosc.osshe.edu/dblink/usher-V.htm
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