Working with Professionals
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You've probably heard the expression that it takes a village to raise a child. That expression is especially true when it comes to a child who has a visual impairment and additional disabilities. You may have found that the number of medical and educational personnel you've met since your child's diagnosis has been considerable. One parent once said of her preschool age child, "Other kids her age collect dolls. My daughter collects business cards from all these doctors and teachers." These medical and educational professionals are part of the team that can support you, your child, and your family in maximizing her development and learning, and they are important resources for you. Assembling a high-quality team that is focused on your child's potential is critical no matter what your child's age. You're part of the team too. As the constant adult on the team and the one person who may know the most about aspects of your child's behaviors and needs, you may need to explain them to other team members and advocate to ensure that your child gets what she needs to maximize her potential.
Depending on your child's age and the combination of her multiple disabilities, there are a wide range of professionals who may be part of her team.
The Medical Team
Eye care professionals such as an ophthalmologist or optometrist, or both, may be part of your child's medical team. As your child learns more and increases her ability to understand, communicate, and follow directions, the eye care specialist will be able to get more detailed information about your child's vision and to share that information with you and others. For that reason, and to make sure your child's visual needs are being monitored, it is important to see the eye care specialist regularly.
Like all children, your child will have a pediatrician, and this doctor should receive information from the eye doctor and from any other specialists your child sees. Other specialists can include physicians such as a neurologist, psychiatrist, or cardiologist and therapists of various kinds. It is important that these medical professionals communicate with each other so that they are looking at your whole child and not just "parts" of her. For one thing, medications can have interactions with each other, and certain procedures can have higher risks because of the presence of another disability. For another, treatment and other programs need to be selected on the basis of all of a child's strengths, needs, and circumstances. Therefore, you'll need to help your child's medical team look at your child as a whole and communicate with each other. At times this effort may seem to take enormous energy and time on your part. Talking to other parents for support and suggestions may be very helpful. Keeping documentation about past medical procedures, medications, and referrals that you can share among doctors is also a good idea.
The Educational Team
If your child is under age 3 and is eligible, your family can receive early intervention services. Your child's early interventionist may or may not be a teacher of students with visual impairments. Children over age 3 who have a visual impairment as their primary disability should have a teacher of students with visual impairments as a member of their educational team. If another disability is your child's primary disability, such as a physical disability or an autism spectrum disorder, the teacher of students with visual impairments may work with your child directly, or may be a consultant, periodically checking in on your child's progress and providing suggestions to others on the educational team rather than working with your child one-on-one. However, if your child has a visual impairment, it is essential that a teacher specializing in work with visually impaired children be involved in her educational assessments and planning.
If your child is of school age, she may be in a regular, or general, education classroom for all or part of the school day. Her classroom teacher will also be a key member of her educational team. Or perhaps your child may spend all or part of her school day in a resource room staffed by a special education teacher. This teacher who may or may not be a teacher of students with visual impairments, will also be a member of your child's team.
Many children with multiple disabilities have a paraeducator (also referred to as a teacher's aide, paraprofessional or teaching assistant) who works with them for all or part of the school day. Many other professionals may work with your child, including a physical therapist (PT), occupational therapist (OT), speech therapist, nurse, or counselor.
Communication: It's Vital
Communication is a critical consideration when it comes to both your child's medical and educational teams. Building communication and good relationships between your family and team members and among the various members of the team is important. In order to support effective communication, consider the following:
- Try to be respectful of all team members and listen to what they have to share with you and your child. In return, ask the same of them, and suggest that they hear you out and respect what you have to say. You're with your child more than anyone else and know a considerable amount about your child's strengths and needs.
- Keep copies of documentation such as reports, notes, and telephone logs so that you can share these with other team members and refer back to them as needed.
- Ask any professional who comes in contact with your child to provide contact information so that you can reach him or her if you have a question or information to share. Everyone involved with your child should know how to reach other team members.
- During meetings, ask for someone to take notes and request a copy of the notes following the meeting. If you anticipate a meeting may be stressful for you or your child, consider bringing someone with you who can listen to the information being shared and take independent notes for you to review at a later time.
- Keep the focus of all interactions on your child. Ask other team members to do the same.
Advocating for Your Child
The word "advocacy" can sound daunting, but it basically means looking out for your child's best interests and making things happen on her behalf. As your child's advocate, you want the best for her and also want to see her succeed. You may find that out of concern and love for your child, you're willing to put in time and effort to give her the best in life that you can. Advocating doesn't necessarily mean being pushy or making a fuss. It means steadily working towards a goal on behalf of your child. Though it is rare for a professional to not have your child's best interests in mind, professionals have varying skills and many distractions. Someone may have so many other children to work with that following up on things for your child is not the number one priority. Therefore, you may find that you need to stay on top of the situation and advocate on your child's behalf.
Communication and advocacy are tied together. To be an effective advocate, you'll need to communicate your thoughts to your child's medical and educational team members. You'll need to listen to their thoughts as well. There may come a time when you disagree with some team members on what is the best course of action for your child. For example, you may want her to spend time each day on a job site learning work skills she'll need when she completes school. Some team members may want your child to attend general education classes several days a week and only work out in the community one day a week.
In order to build your case for what you want for your child, it's important to do your research. For example, you can learn from other parents and professionals what type of work programs are being done with children who have similar functioning levels to your child and are of the same age. Review the assessment reports and the current Individualized Education Program (IEP) for your child. If there is something you are unsure of, ask for information or an explanation.
It's a good idea too to take time to learn about the Individuals with Disabilities Education Act (IDEA) and your child's rights under the law. Attend meetings and ask for meetings with professionals when you have questions or would like to see changes made in your child's current educational or medical circumstances.
As your child gets older, if her skills are such that she can begin to advocate for herself, try to involve her in doing so. Encourage her to share her thoughts about what she is doing now and what she would like to do in the future. Try to help her learn skills to explain her needs to others so they better understand her visual impairment and additional disabilities and how they affect her functioning. You're not alone in all these efforts. Other parents, and national parents' groups and organizations for people with visual impairments and other disabilities are great resources and sources of help and support for you.