FOR PARENTS OF SPECIAL NEEDS CHILDREN: KEEPING YOUR CHILD'S RECORDS

Getting the help we need for our children can be a very daunting task. One of the most powerful tools for facilitating this as we work with professionals is a record book which contains, in an organized way, essential information about your child.

Fran Rice, a noted child advocate in the United States, believes parents are in a unique position to create one of these "books" to provide an organized record of information about their child. This record can accelerate the process of professionals gaining familiarity with your child and his/her history. The first task of any expert is to gather information--if you facilitate this process, the doctor/health care professional/educator can spend more time problem solving and intervening, instead of first having to reconstruct your child's "story".

The first step is to buy yourself a good sized three ring binder, a hole punch, some three ring lined paper and a set of dividers. This will become your permanent file for all the information you will need. Remember, the purpose is to record information--do this in a way that feels comfortable to you (i.e. point form notes, dictate to a typist, print, etc.). Next you need to label and arrange the dividers as follows:

* Profile. You will record here the child's strengths,weaknesses, likes and dislikes. Who is this child?

* History. You will record here the child's immediate family tree, health history, developmental history and any significant events in the child's life.

* Concerns - Current. Before each meeting with a professional, write down the concerns you have right now. This will form the basis of your initial discussion. Date these records.

* Concerns - Past. Keep past records, again dated including any action taken.

* Medical. You will file here copies of any letter you have written to or received from doctors, letters from one doctor to another (obtain copies from you child's physician(s).

* Diagnostic or Treatment Reports. Begin and maintain a record of any relevant medications your child has been prescribed (Doctor, name of medication, amount, date begun and why, any changes, date ended and why, benefits and side effects). Also file here copies of any articles or information you have shared with health professionals.

* Psychological/Social. You will file here copies of any letters, reports, assessments, etc. dealing with psychological/emotional/social/behavioural concerns. If the document relates to the school, put a note in the "Education" file to say that "document" is in the Psychological file.

* Educational. You will file here copies of anything about your child in school in the past couple of years. This will include report cards, letters, notes, assessments, teacher rating scales, descriptions of your child as a learner, reports or other documents about case conferences, IPRC (Identification Placement and Review Committee) reports, any IEPs (Individual Education Plan). Ask your school for a copy of the "Information for Parents" about the IPRC and provisions for children with special needs. You are entitled to see and have copies of anything in your child's accumulated ("cum-file") record file, which is kept in your child's school. Be sure to see and read this file--it may contain some very important information! Also file here copies of any articles or information you have shared with teachers or other education professionals.

Some general notes:
* Always keep a copy of everything for yourself--do not hesitate to ask for copies

* Make sure everything is dated

* This is your family's book--decide what you want to share with people you are dealing with. It may help to have a copy to give to the professional.

Once you have compiled this binder, keep it up to date. This will provide you with a valuable assessment tool. Many parents can pick up clues regarding their child, simply by going back over the report cards and picking up key words-many will reappear report to report or year to year. This may provide valuable clues to the difficulties your child is experiencing or the areas where their learning is breaking down. Look wholistically at these reports-look for clues regarding social difficulties, recess or lunchroom difficulties, busing problems, etc. This type of binder is useful for doctors to assess and follow-up, for parents to prepare for meetings and for the child as they grow older and need to learn to advocate for themselves.

Within the group we often use the example of the parent as "general contractor", who seeks out and arranges the expert services. This binder will become your most essential tool in your efforts to construct a world for your child in which he or she can succeed!

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Our thanks to CH.A.D.D. Toronto, Canada