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The following document is also available for download Tips for Parents of children with ASDIntroductionParents are often the strongest and best advocate for their child. While they have the best understanding of their child and an empowering desire that their child achieve their potential, they can benefit from assistance from another advocate and from advocacy methods. The following aims to provide practical advice. This material is based heavily on a Canadian website: http://www.ldac-taac.ca/ld-law/AAandC/aaandc3.htm Information and Communication: Get It in
Writing or Put It into Writing Proper documentation helps parents to keep track of their efforts and demonstrates that they have followed appropriate procedure. The documentation can help them to present accurate information, including names, dates and places. Such information too often becomes lost when only memory is relied on. An advocate can help parents to establish and maintain accurate files, and to find missing pieces such as lost medical or school records. Building a FileYou can organize information in many ways. Some parents may appreciate suggestions about how to do it. Possibilities include a three-ring binder, a notebook or a set of file folders. What is important is that the file includes everything related to the child, that all the information is kept together in one place, and that the file(s) are easy to get at whenever needed. As an advocate, you should be able to advise parents about what they should include in their file, although it is the parents' responsibility to keep all the information together. Some of the information that parents should include are:
Birth information should include any prenatal complications, birth height and weight, and complications during or after delivery. Developmental information includes details on when the child began walking and talking, the child's coordination, and whether the child is right- or left-handed (or both). Medical information should include:
For illnesses or injuries, include as much detail as possible - dates, length of illness, doctor in attendance, where attended, and the dosage of any medications administered. Information on hearing and vision tests should also be noted, including who gave them and the results. Such tests should not only include visual and auditory acuity but the student's perception as well. Also include a record of a comprehensive medical check-up from the family doctor. School information includes the child's school history, beginning with nursery school, play school or day care, if applicable. Include a copy of each report card, along with the school attended, the teacher's name, the grade level and the year attended. Any records of meetings or interviews with teachers, along with problems noted or suggestions made, should be included. Note any behaviour or discipline problems, whether at school, when the child is with others, or when the child is alone. Any information gathered from outside sources should be included (e.g. from sport or recreational groups or clubs). In some cases, services such as mental health, family counselling, child and family services, speech therapists, etc., may be part of the history. Family information includes the child's position within the family, any changes in the family (including a loss, separation or divorce) and any learning problems noted in other family members. Different forms of communication, such as letters, phone calls, notes and print-outs of e-mail messages can all be included in the file. If possible, retain every piece of information related to the child. A note from the bus driver or the Brownie/Scout leader may prove helpful in demonstrating the child's social interaction skills, for example. Parents should write down a record of any relevant verbal communications. It is essential that the file record include copies of information related to the child that is produced by others (e.g. teachers, psychologists). Parents or advocates must ask for these. Keeping Records of Phone Calls, and Following Up ConversationsRemind parents to jot down a note about any phone conversation related to their child. (Having a notebook near the phone is especially helpful here.) Parents should include the date, name (and title/position) of the caller, and a brief summary of the call, including any actions or recommendations suggested. Advocates should tell parents to follow up the conversation with a letter if there are any questionable comments made or if the person spoken to promised to take some action (e.g. the caller may have been a teacher who said she would arrange a meeting with her, the parents and the resource room teacher - the parents can confirm this promise in a letter). Letters Letters (by post, fax or e-mail) can be used to inform people, to confirm information or to contact people who cannot be reached by telephone. Letters also provide excellent documentation of action taken or recommended. Remind parents to keep copies of any letters they write, and to include copies of previous correspondence when contacting a new person or someone at a higher level. NotesTaking notes at meetings gives an accurate account of the issues discussed. Remind parents to take notes whenever there is a discussion of their child. This includes meetings with teachers, doctors and other professionals. The note should include the date and place of the meeting as well as the names of everyone present and the main issues discussed. You may find it useful to suggest to parents that they always highlight in their notes any further action to be taken. Communicating EffectivelyWhen advocating for another person, it is important to remember that there are different kinds of advocacy. Advocacy can take place at the legislative, local or individual level. To communicate effectively at each level, you need the appropriate skills to deal with various groups and individuals. What is said and how it is said has a direct affect on how well the message is received, and may have a bearing on the results achieved. There are different levels at which communication occurs beyond that of the daily interaction between the child and the teacher. Important interactions are also between the parent(s) and:
Parent/Child/FamilyAny attempt to create change for the child should involve the child in some way. The child should be included in meetings or discussions related to the child. The child should also be present whenever any discussions with the teacher involve the child. As the child grows older, the approach to communicating with him or her will change. Parents need to be aware of the necessity of interacting with their child. All members of the family must approach the problem as a team, working together as co-advocates. Parent/Child/Family and Immediate CommunityAll environments require your attention. It is important that friendship groups become aware of and sensitive to your child's needs. Parent/TeacherInevitably, the parent will have to communicate with the child's teacher. Remind parents that they have to deal with the reality of a teacher's role and all the inherent responsibilities. Parents might have to remind the teacher that they are dealing with a special case or circumstance that requires more attention or help. The communication between the parents and the teacher is very important and requires a team approach. At the junior high level, the communication may become more complicated because there are many teachers to deal with. Designating a school coordinator may become necessary at this point. There may also be some resentment because of expectations that your child should have been fully prepared to deal with the curriculum. Parent/SchoolCommunication between the parent and the school as an organization may be more difficult because the parent is only one of many with unique concerns about a particular student. Influencing an organization with its rules, limitations and procedures presents new problems. The parent needs to communicate the child's personal circumstances with regard to a learning disability, and any problems encountered while trying to find help. This may include dealing with procedures, roles or responsibilities within the school. At this level, the parent needs to be able to work toward having the school accept some responsibility for working toward a solution. The parent may be dealing with the principal or other teachers at this level. Parent/Teacher/Other ProfessionalsIf solving the child's problem involves bringing together people who have no defined structure in place for working together, the parent has to clarify how the group should work toward a common goal - coming to a consensus in order to recommend a course of action. The next step is to move back to the parent/school or parent/school board level for implementation. To work effectively at this process, practical communication skills and the ability to network or to coordinate information from the various people involved are necessary. The parent and teacher may deal with a psychologist and then have to obtain from the principal the resources needed to implement an IEP based on the psychologist's report. Parent/Association/School SystemIn trying to find the best solution for their child, parents may seek the advice of other parents through an association. This involves further networking and coordination of additional information. If such information is to be used effectively, it is important to emphasize that all parties are collaborators seeking to help the child. If an "us versus them" approach develops, it can sabotage everyone's efforts. Pursuing Appropriate Paths of Communication for AdvocacyWhen using advocacy within a primary or secondary education system, it helps to know the lines of authority. As an advocate, you need to discover the lines of authority, responsibilities and who the decision makers are. The flow chart below gives an indication of the general upward flow of communication in a school domain. Effective advocacy takes issue to the relevant authorities and decision makers. It is reasonable to ask that a decision and the reasons for the decision be documented.
If the problem cannot be solved at one level, it is appropriate to go to the next level of authority. However, you should inform the person you dealt with initially that you are taking that next step. For example, if going beyond the classroom teacher, the parents (directly or through the advocate) should say:
"Thank you for your assistance, but
I realize that we cannot accomplish any more without the involvement of the
principal. I am going to talk with her about this now." In the school system, if you decide to step beyond the teacher toward the principal and the superintendent, it is important not to miss any level in the hierarchy, as people in higher positions expect that the established pecking order will be followed. They are likely to feel angry if they are not given the opportunity for input. It is also important to remember that those involved at each level have a stake in the matter. By acknowledging each person's genuine interest and concern, you can help prevent the possibility of hostility from someone feeling devalued or unappreciated. General Tips on Advocacy by ParentsParents can and should:
Parents should do everything possible to work with school trustees, with MLAs/MPPs, and with the educational system as co-advocates. Ultimately, however, if redress does not occur, parents can take at least five other courses of actions. If they have the will and can (perhaps jointly) find the financial means, they may:
Attitudinal Barriers Commonly Encountered in School Systems Toward Learning DisabilitiesThe following comments are the kinds of unhelpful responses that parents often receive from teachers or education officials when trying to seek reasonable education "accommodations":
Here are some of the questions that parents ask and never receive answers to:
Some Questions That a Parent or Advocate Could Ask Concerning a Student Who Has a Learning DisabilityAlthough the questions will differ with each situation, the following are some common questions that parents should ask concerning their child (or that an advocate should ask on their behalf). Initial Questions
If a Learning Disability Is Identified
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Aspergers Advocacy Australia
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