Parent Advocate: Building Your Child’s Support Team

By Debbie L. Dobbs, M.S.

Many parents are overwhelmed after their child receives a learning difference diagnosis. Knowing how to build a support system for both the family and child is critical to everyone’s success.

Parents are the experts on their children’s welfare. They know better than anyone who their children are and what they need. But after receiving a learning difference diagnosis, many parents feel lost and confused as to how to effectively navigate the maze of therapists, educators and information.

Family and friends
A first step in team building is looking to those closest to you. While family and friends may not be medical or educational experts, they can still be critical players in keeping parents from feeling overwhelmed and discouraged. Parents should work together to function as a team-within-the-team, even if they are separated or divorced, and even if their roles and duties are very different. Ask nearby extended family members to become part of the child’s daily or weekly routine (carpool, school events, and activities). Maybe a grandparent can take one child on an outing while the other goes to therapy.

Starting online
Your local online community can be a valuable member of your child’s team. Many online listservs are populated by parents who are seasoned and have well-tested information and experience to offer. Going online lets parents reach out at their own pace and monitor how much information is gathered at a time. Local online parent support groups provide empathy, first-hand knowledge and excellent referrals and resources within the community. National support groups tend to offer broad information and are often oriented toward in-depth discussions regarding the latest treatments, therapies, and even controversies. Also, national support groups may be limited on feedback pertaining to local information and services; however, they are helpful when you are seeking a global, far-reaching perspective.

Building relationships
Your child’s team may include therapists, education specialists, psychologists and doctors. Finding those professionals who are a successful fit with your child’s needs is important. Following are some questions to ask when looking for the most knowledgeable and experienced professionals:

What is the provider’s training and experience in working with children who have the same diagnosis as your child? What are the provider’s certifications and credentials?
Are parents allowed to observe therapy sessions?
Does the therapist/educator set realistic goals and communicate often with the parents on how those goals are being met?
Will the parents receive detailed reports in writing regarding the child’s progress?
What is the nature of the therapy? (i.e., play, structured, mixed, child-directed?)
Do they have appointment times convenient for you and your child? Are they located nearby?
How are finances handled? Do they accept your insurance and/or assistance program coverage? If you’re paying out-of-pocket, will they allow a payment program and/or offer discounts?
Does the provider’s personality fit well with your child? Do they have a good rapport and relationship of trust? It is paramount that the child trust the therapist and that the therapist can relate to the child.

The team
Along with a new diagnosis comes new knowledge. Many parents are unaware of the specialists available to help their child. Following is a list of professionals who routinely help children with learning differences. For more descriptions of possible team members, see the Great Schools Web site at www.greatschools.net.

A parent advocate represents parents in legal issues related to special education but may not have legal training.
An attorney provides legal assistance to parents about issues pertaining to federal and state special education laws and regulations.
A child psychiatrist specializes in the assessment and treatment of behavioral and emotional aspects of infants, children, and adolescents, and is a medical doctor who can prescribe medication. A clinical psychologist provides non-medical diagnosis and therapeutic treatment of emotional and behavioral problems for individuals or groups. An educational psychologist administers psychological and educational assessments, prepares written reports that interprets test results and behavior, and consults regarding education and behavior. A school psychologist is specially trained to address students’ needs in the public school setting, including psycho- educational evaluations, planning and evaluating services, and acting as liaison between students, parents, teachers, and administrators.
A developmental-behavioral pediatrician focuses on the diagnosis and treatment of developmental disorders in children.
An occupational therapist provides assessment and training to improve muscular strength, motor, or sensory coordination and functioning.
A speech and language therapist provides assessment and training to improve communication skills.
A resource teacher/resource specialist is a special education teacher who is trained to provide educational assessments, instructional planning, ongoing evaluation of students, and to consult with general educational teachers regarding the needs of special education students.
A social worker provides counseling for individuals and families.

Pacing yourself
As their child’s best advocate, parents know when to say when. Depending on the learning difference diagnosis, a child might need a range of different therapies or just one specific type of intervention. Some children can meet the task head on, but others may need to be introduced slowly to new therapies and be allowed to develop relationships with their new team members. Take your cues from your child as to whether activities, appointments and/or therapies need to speed up or slow down. Knowing when to take a break may be a parent’s
most valuable skill.

Keeping it organized
Despite our digital age, paperwork is still a very real part of maintaining records. Below are some tips to keep documents portable, up-to-date and easy to access.

If feasible, obtain a handheld PDA to organize your calendar, contacts, e-mails, and documents when you are on the go.
Electronically scan medical documents, school and therapists’ notes and administrative paperwork to make them easier to access and more portable.
Binders are a great way to organize hardcopies into categories (school, medical records, therapies, and activities).
Keep current track of expenses and financial issues (scholarship applications, government paperwork). There are some easy-to-use software programs available that are helpful.
Keeping a journal can help with daily reports. By referencing past entries, you can evaluate the effectiveness of various treatments and therapies.

Putting together a support system for your child and family takes time. To keep from becoming overwhelmed, a step-by-step approach works best. When you begin to see the results of your efforts as your support team grows, your stress level decreases. Remember, this is a process, and the team members may change along the way as your child grows and progresses. The key is to remain flexible and relish the successes along the way.

Debbie L. Dobbs, M.S. is a health care consultant, educational child advocate and community activist. She is a graduate of the Georgia Advocacy Office Parent Leadership Support Project (PLSP) and is a member of the Council of Parent Advocate and Attorneys. Debbie moderates the North Fulton Autism Support Group, which is online at http://health. groups.yahoo.com/group/nfasg/.

Share and Enjoy: