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For parents of children with visual impairments

American Foundation for the Blind® | National Association for Parents of Children with Visual Impairments

Downloadable Toolkit on Working with Medical Professionals

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In a hurry? Want to share FamilyConnect's information with a friend or family member who doesn't have easy access to the Internet? These printable toolkits, available in both English and Spanish, offer the crucial information that families need to know about working with medical professionals.



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Eye Care Professionals Who May Work with Your Child

Your child may have to be seen by a variety of eye care specialists, each with a specific expertise. Understanding the qualifications of each and their roles in managing your child's eye care is important. Whenever possible, consult with someone knowledgeable about the particular eye condition of your child. Many eye care professionals don't often work with patients who have low vision. Therefore, they're unfamiliar with the special needs of such patients, as well as the specialized exams, procedures, and devices involved in providing effective low vision services. The Directory of Services is a source of agencies and services that may be able to help you locate such a specialist.

Ophthalmologists

An ophthalmologist is a medical doctor (MD will follow the person's name) who has gone through college, followed by four years of medical school, and completed an internship and residency. Ophthalmologists diagnose and treat eye diseases and can perform surgery. In all probability, it was an ophthalmologist who first diagnosed your child's visual impairment. These professionals also can prescribe eyeglasses or contact lenses for children. Some ophthalmologists and optometrists specialize in low vision, that is, working specifically with people to help them maximize their use of vision, but most do not. An ophthalmologist may or may not be a specialist in working with children. Many ophthalmologists specialize in one aspect of eye diseases—retinal diseases, for example. You'll find in general that ophthalmologists vary considerably in their approach with children, especially those with multiple disabilities. Examining and working with children often involves considerations different from those involved in working with adults, for example, in such areas as communicating clearly, being responsive to a child's emotions and behavior, and being attuned to the way in which children may indicate what they can, in fact, see.

It's important that you and your child have a confident, comfortable relationship with the ophthalmologist, so if you have any concerns about that, you may want to consider seeing another doctor—perhaps a pediatric ophthalmologist—for a second opinion.

Optometrists

An optometrist will have the initials OD after his or her name. Optometrists have completed college and three to four years of optometry school. They do not perform surgery. Instead, they focus on helping patients maximize the use of their vision. They do this by prescribing eyeglasses or contact lenses and, if appropriate, low vision devices such as magnifiers, monoculars, or video magnifiers, which are also referred to as closed-circuit televisions (CCTVs). Optometrists, or their assistants, may teach children how to use low vision devices. In some states, optometrists are allowed to prescribe medications and diagnose eye diseases; in other states they are not. Some optometrists provide behavioral optometry, which involves having children do exercises or visual training to increase their visual skills. For most children who have a disease such as albinism, retinopathy of prematurity, or cortical visual impairment, this type of training probably won't be effective. Before enrolling a child in a behavioral optometry regimen, it's best to get additional opinions about whether this method has potential benefits for the child's particular visual impairments.

Opticians

An optician has taken courses in optics and completed a two-year apprenticeship under an experienced optician. Opticians grind and fit lenses in accordance with prescriptions from an ophthalmologist or optometrist. The optician will help you and your child select frames for her eyeglasses. For the lenses to be effective, it's extremely important to have frames that are comfortable and fit your child's face properly.

Ocularists

An ocularist has been trained and certified to develop artificial eyes, which are typically made of plastic. You may have heard the term "glass eye" or "prosthetic eye" used. Children born without an eye, a condition called anophthalmia, or who have had an eye removed because of disease, have to have artificial eyes made specifically for them. The eye is placed in the child's eye socket to promote proper growth of the socket and development of facial bones. It also serves cosmetic purposes. As the child grows, a new eye will have to be made periodically.

Low Vision Specialists

The term low vision specialist refers to an ophthalmologist or optometrist who has completed additional training and certification in the area of low vision. An exam conducted by a low vision specialist is similar to the exam conducted by either an ophthalmologist or optometrist. However, it will have additional components that focus on helping children maximize their usable vision through low vision devices for:

  • Near tasks (closer than 16 inches)

  • Intermediate tasks (16 inches to 3 feet)

  • Distance tasks (beyond 3 feet)

The low vision specialist can prescribe aids such as magnifiers, monoculars, or video magnifiers. A low vision specialist also considers how lighting and nonoptical aids such as a reading stand, bold-lined paper, or nonprescription sun lenses can help children use their vision more efficiently.

Certified Low Vision Therapists

A certified low vision therapist (CLVT) has completed an internship and passed an exam to demonstrate knowledge of low vision. The CLVT conducts a functional vision assessment (FVA) to determine how a child is using his or her vision for education, recreation, and daily living tasks. The low vision therapist may also be a teacher of students with visual impairments (TVI) or an orientation and mobility (O&M) specialist. The CLVT works closely with either an ophthalmologist or optometrist, who prescribes low vision devices based on the functional vision assessment. The CLVT also teaches children how to use these aids and other techniques to maximize their functional vision. A CLVT is not a doctor and cannot diagnose an eye disease, prescribe eyeglasses or contact lenses, or prescribe medications.

What to Expect at the Eye Doctor's Office

For many parents, taking their child to an eye doctor appointment, whether with an ophthalmologist or optometrist, can be stressful. This may sometimes be your experience, too. Your child may or may not cooperate with medical staff, your questions may or may not get answered, and you may come away unsure of what exactly it was that the doctor did during the appointment.

Trying to prepare for the visit ahead of time may help. Writing down a list of your questions and concerns can be useful in getting the information you need. Becoming familiar with what to expect when you take your child to an eye doctor can also help you prepare your child and yourself so the appointment goes more smoothly and you gain a better understanding about your child's visual impairment.

You may want to ask your child's early interventionist, if he is under age 3, or teacher of students with visual impairments (TVI) to go with you and your child to the appointment. You'll have another adult along who has knowledge about your child and his use of vision, someone who has familiarity with the procedures in the eye doctor's office, and another person to listen to the information the eye doctor and staff share. If this person can't make the appointment, you can ask for suggestions on questions you should ask or information you should provide.

Gathering Background Information

Each time your child is seen by a new eye doctor, you can expect the doctor or a member of the staff to ask about your family's history of visual impairment and about your child's birth history. Some eye conditions, such as albinism and retinitis pigmentosa, are inherited, so knowing about who in the family has the condition and how it has affected their vision can give a medical professional valuable insight into your child's prognosis.

In addition, because some conditions develop during pregnancy or the birth process, information about your pregnancy, labor, and delivery is equally valuable. In subsequent visits to the same doctor, you may not be asked about the history or background of your child's eye condition but about any changes you may have observed and how your child has been doing since his last exam.

If your child has acquired his visual impairment later in childhood, you might expect questions about when you or your child first noticed visual changes, symptoms your child is currently experiencing, and the progression of changes in his vision.

In general, because you may be asked questions about your observations of your child's use of vision—and because you yourself may have questions—in the days prior to your child's appointment, you may want to make notes about how you see your child using or not using his vision. The more specific examples you can share, the more information can be used to evaluate your child and provide appropriate recommendations.

If your child's teacher of students with visual impairments (TVI) has completed a functional vision assessment (FVA), ask the TVI to send this to the eye doctor ahead of time or bring a copy to share with the doctor. The TVI sees your child in environments in which your child is more familiar and comfortable. Therefore, there can be a significant difference in how your child uses his vision in the eye doctor's office as compared to the classroom or your home, and this is helpful information for the doctor to have.

Conducting the Exam

Both ophthalmologists and optometrists will evaluate your child's ocular health; that is, the health of his eye. If he is very young, you may need to hold your child while the doctor conducts the exam. In some cases, it may be necessary for the doctor to schedule a procedure to anesthetize your child, or put him to sleep, in order to examine his eyes fully. During an exam, the eye doctor will check and measure a number of items, which usually include the following:

Visual acuity: The doctor will typically assess your child's ability to detect detail. For a young child or a child with multiple disabilities, the doctor may hold up cards with stripes on them to see if your child looks toward the stripes. He or she may also use objects at a distance for your child to look at, may show your child pictures and have your child name them, or may have your child match a picture to one on a card placed in front of him. If your child is older, the doctor may ask him to read letters, numbers, or words presented on a chart in the distance or on a card held within 16 inches of your child's eyes. The doctor will measure your child's distance acuity and also his near acuity, or his ability to see objects less then 16 inches away.

Visual fields: The doctor will also assess your child's visual fields, his ability to see in front of himself, above, below, and to the sides. This may be accomplished by moving an object within your child's field of vision and noting when your child realizes the object is there. If your child is older and has an eye disease that is typically accompanied by field loss, a machine may be used to measure his visual fields. Your child may be asked to rest his chin on the machine and press a button each time he observes a light.

Refraction: Refraction is a process through which the doctor determines if your child's eyes would bring things more clearly into focus if he wore eyeglasses or contact lenses. If your child is young, the doctor may hold up, in front of your child's eyes, a panel that has different lenses in it. As the doctor uses a lighted instrument, he or she is looking at the reaction of your child's eye to each lens to determine which lens, if any, will help improve your child's visual acuity. If your child is older, the doctor may have him wear a trial pair of eyeglasses to which lenses have been added, or your child may be asked to rest his chin on a machine as the doctor places different lenses in front of his eye. At this point, you may hear the doctor ask something like "Is 1 better than 2?" "One" represents a certain prescription for eyeglasses or contact lenses while "two" represents another prescription. Not every child will benefit from eyeglasses or contact lenses, however.

Health of the eye: Using a variety of instruments, the doctor will examine your child's eyes to look for signs of diseases and changes to the eyes. In order to see all the way to the back of the eyes, eye drops need to be placed in your child's eyes to dilate the pupil and make it larger so that the doctor can more easily see the back of the eye. Typically the drops sting the eyes, and your child may not be very cooperative, relaxed, or calm when these are put into his eyes. Once the drops are in the eyes, it can take up to 30 minutes for your child's eyes to dilate fully. The drops remain effective for several hours, so you'll find that light will bother your child. For that reason, it's a good idea to bring his hat or sunglasses for him to wear when you leave the eye doctor's office.

Eye pressure: The eye doctor has several methods he or she can use to measure the pressure inside your child's eyes. Drops will be put in your child's eyes to anesthetize, or numb, the eyes' surface. If your child is older, he'll be asked to place his chin on a machine, and the doctor will move a probe onto the surface of his eye to measure the pressure inside. If your child is younger or has multiple disabilities, the doctor may use a hand-held probe to measure the pressure or may need to do this procedure while your child is under general anesthesia. Measuring the pressure inside the eyes is particularly important as a way to check for the presence of glaucoma and is part of most standard eye exams for that reason.

Low vision devices: As part of a low vision examination (see Low Vision Services: An Overview), depending on your child's age, the eye doctor may have your child try using a variety of low vision devices such as magnifiers, monoculars, or video magnifiers. He or she may show your child different lighting sources or other aids such as a reading stand. Typically this part of the exam will occur if your child is seeing a low vision specialist—an ophthalmologist or optometrist who specializes in helping people with low vision maximize their use of vision.

Other tests may take place during the exam, depending on your child's age, level of cooperation, and eye disease, and on the information you, the TVI, and other medical professionals have shared. As the eye doctor moves through the exam, ask for explanations of what is being done and why.

Following the Exam

After the doctor conducts the exam, the findings will be shared with you. This is the time when you might want to take some notes or ask permission to tape record the discussion. If your child is young or has multiple disabilities, you may want to bring someone with you to the exam who can be with your child while you talk to the doctor.

If your child is in elementary school or beyond and on or near grade level, he can be present and be part of the discussion so that he can ask questions and begin to better understand his visual impairment. By the time a child is in the upper elementary grades, unless there are compelling reasons he should not be included in the discussion, he may find it helpful to be present and participating with you and the eye doctor. Depending on whether the exam is an initial exam or a regularly scheduled one, the information you receive will vary. It may include:

  • Any changes the eye doctor observed in your child's ocular health or use of vision.
  • The need for prescription lenses, either eyeglasses or contact lenses. If this is the case, you should be given a prescription to take to an optician.
  • Treatment options for your child, such as patching, medication, or surgery.
  • Referrals to another eye doctor who may have a different specialty.
  • Referrals to other medical personnel, such as a neurologist, for additional evaluation.
  • The diagnosis, indicating the cause of your child's visual impairment, and the prognosis, and what you can expect in the future.
  • Any other conditions your child may have developed or may develop. For example, children with cataracts are at risk for developing glaucoma.
  • Recommendations for the sizes of objects your child can see, where to position objects, what lighting is best for your child, and low vision devices that may help your child use vision more efficiently.
  • Restrictions for your child, if appropriate, so that he does not increase the probability of losing vision. For instance, children who are at risk for retinal detachments may be restricted from contact sports such as football, during which they may be more likely to experience a blow to the head.

If you have questions prepared for the eye doctor, ask that these be answered. If he or she is not able to sit and talk with you, ask to talk with another member of the doctor's staff. If that person is not able to answer your questions, ask for a follow-up appointment with the eye doctor. You have a right to have all your questions answered by a qualified individual.

Questions to Ask Your Child's Eye Care Specialist

Your Observations

When visiting a doctor's office, it's not unusual for parents and children to feel tense and anxious coming to an exam. You can help everyone, including the doctor, by giving a clear, concise picture of how your child functions visually and what your observations and concerns might be. For example:

  • What do you think your child can see?
  • What seems to attract his attention?
  • Can he control his head, or does it wobble, or tilt?
  • Is he sensitive to light or does he stare at it?
  • Does he rub or poke at his eyes?
  • Does he reach for toys—in front or toward one side or the other?

Providing this kind of information, based on your day-to-day observation of how your child behaves, will help your doctor to make an evaluation. Be sure to tell the doctor about any other health or disability conditions, allergies, and any medications that may have been prescribed by your pediatrician. Also, if you have any additional medical or other relevant records, share them.

Your Questions

You can expect an eye specialist to examine, diagnose, and explain in detail what you need to know about your child's eye condition. Here are some basic questions to ask:

  • What is the diagnosis?
  • What caused the eye problem?
  • Was my child born with it?
  • Is it an inherited condition?
  • What is the prognosis?
  • Is it stable? Will it get better? Will it get worse?
  • Is there any treatment for the condition?
  • Will eyeglasses or contact lenses help?
  • Are there any other problems associated with this condition?
  • Can you tell how much my child can see?
  • What kind of lighting is best for my child?
  • Are there any restrictions on my child's activities?
  • What else do we need to know?

Medical Language

Every profession has its own specialized language and abbreviations, and medicine is not an exception. No matter how nontechnical a doctor's explanations are, there are bound to be times when you feel as if you're listening to a foreign language, filled with words that you've heard before but don't quite grasp. Whenever you find yourself in that situation, ask for additional explanations.

www.familyconnect.org

FamilyConnect is an online, multimedia community created by the American Foundation for the Blind (AFB) and the National Association for Parents of Children with Visual Impairments (NAPVI). This site gives parents of visually impaired children a place to support each other, share stories and concerns, and link to local resources. The site also features a mom-authored blog, inspiring video testimonials from families, and articles authored by parents and experts in the field of blindness on multiple disabilities, technology, education, and more. From the personal to the professional, families will find all the resources they need to raise their children from birth to adulthood.

The American Foundation for the Blind and the National Association for Parents of Children with Visual Impairments would like to thank the Lavelle Fund for the Blind, Inc. and the Conrad N. Hilton Foundation for their generous support as charter sponsors of FamilyConnect. We are also grateful to The Annie E. Casey Foundation and Morgan Stanley for their support.

Copyright © 2009 American Foundation for the Blind. All rights reserved. Material provided on FamilyConnect.org is intended for informational use only and is not a substitute for professional medical or legal advice. If you have any concerns about your child's health or legal rights, please contact your family health provider or attorney.

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