Working with Medical and Educational 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 is blind or low vision with 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 said of their 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. The team works together to maximize your child’s development and learning. They’re also important resources for you. Assembling a high-quality team that is focused on your child’s potential is critical no matter your child’s age.
Remember, you’re part of the team as well. You’re the constant adult on the team. You’re the person who knows the most about your child’s behaviors and needs. You can explain aspects of your child to other team members. You can advocate to ensure that your child gets what they need to maximize their potential.
Depending on your child’s age and the combination of multiple disabilities, there is a wide range of professionals who may be part of your child’s team.
The Medical Team
Eye care professionals such as an ophthalmologist and/or optometrist may be part of your child’s medical team. It is important to see the eye care specialist regularly. As your child learns more and increases their 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 can share that information with you and others.
Like all children, your child will have a pediatrician. The pediatrician should receive information from the ophthalmologist 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.
You’ll need to help your child’s medical team to communicate with each other and to take into consideration your whole child. Medications can have interactions with each other, and certain procedures can have higher risks because of the presence of another disability. Additionally, treatment and other programs need to be selected on the basis of all of a child’s strengths, needs, and circumstances.
At times this effort may seem to take enormous energy and time on your part. Talk to other parents for support and suggestions. 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 three 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 (TVI). Children over age three who have an eye condition as their primary disability should have a TVI as a member of their educational team. If another disability is your child’s primary disability, such as a physical disability or autism spectrum disorder, the TVI may provide direct services or act as a consultant.
A consultant would periodically check in on your child’s progress. They would also provide suggestions to others on the educational team rather than working with your child one-on-one. However, if your child has an eye condition, it is essential that a teacher specializing in work with children who are blind or low vision be involved in your child’s educational assessments and planning.
If your child is of school age, they may be in a general (regular) education classroom for all or part of the school day. Your child’s classroom teacher will also be a key member of the educational team. Or perhaps your child may spend all or part of the school day in a resource room staffed by a special education teacher. This teacher who may or may not be a TVI will also be a member of your child’s team.
Many children with multiple disabilities have a paraeducator. A paraeducator is also referred to as a teacher’s aide, paraprofessional, or teaching assistant. The paraeducator may work 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 them 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.
Advocate for Your Child
The word “advocacy” can sound daunting. It means looking out for your child’s best interests and making things happen on your child’s behalf. As your child’s advocate, you want the best for them and also want to see them succeed. You may find that out of concern and love for your child, you’re willing to put in time and effort to give them 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 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 your child to spend time each day on a job site learning work skills. 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. You can ask 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.
Know the Law
It’s a good idea too to take time to learn about the Individuals with Disabilities Education Act (IDEA). Know 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, try to involve your child in advocating for themself. Encourage them to share their thoughts about what they’re doing now and what they would like to do in the future. Try to help your child learn skills to explain their needs to others. Help them better understand their eye condition and additional disabilities and how they affect their functioning.
You’re not alone in all these efforts. Equip yourself with resources and support groups. Other parents, national parents’ groups, organizations for people who are blind or low vision, and other disability groups are great resources and sources of help and support for you.