Education and learning

by Pauline Beaudoin.

Helping Our Child in School by Participating in the Development of the Individualized Education Plan

A child's neurofibromatosis diagnosis is often soon followed by another diagnosis, which is just as difficult for the parents, namely, the presence of a learning disability. In fact, around 50% of affected people present this problem to varying degrees. In early childhood, the clues may be vague, with the parents finding that something is not right, but the disability will appear more clearly when the child will be exposed to school tasks.

Faced with this dual diagnosis, parents may feel different emotions, ranging from sadness and anger to denial and despair. These stages are normal, and most parents achieve a certain degree of serenity, allowing for acceptance and reorganization. With this renewed feeling of peace, they will be ready to revise their values and priorities and, especially, able to make a commitment to support their child. They are then eager to establish a sound cooperative relationship with the school.

Individualized education plan

Section 96.14 of the Education Act (see box) gives them this opportunity by including their active participation in the development of the individualized education plan. This is a privileged way of cooperating with the school in view of ensuring the progress of their child with a learning disability, while providing the child with specialized services if necessary.

96.14. In the case of a handicapped student or a student with a social maladjustment or a learning disability, the principal, with the assistance of the student's parents, of the staff providing services to the student, and of the student himself, unless the student is unable to do so, shall establish an individualized education plan adapted to the needs of the student. The plan must be consistent with the school board's policy concerning the organization of services for handicapped students and students with social maladjustments or learning disabilities and in keeping with the ability and needs of the student as evaluated by the school board before the student's placement and enrollment at the school.

The principal shall see to the implementation and periodical evaluation of the education plan and inform the student's parents on a regular basis.

Importance of the parents to ensure continuity

The involvement of the parents in the development of this plan is of utmost importance, as they are the people who know the child best, having seen the child progress since birth. They are the permanent link between the child and the school environment. School professionals change from one year to the next, and the child may change schools, but the parents are the ones who ensure continuity and follow-up. Especially in high school, parents must be vigilant and make sure that both the medical and academic information about the child is provided to every teacher. Parents must have the patience to repeat themselves year after year.

Being prepared to be effective

The role of the parents in the school is to present their point of view, and make sure to be heard and understood by all. Parents must be well prepared so that they will not feel intimidated at this meeting for the development of the education plan and in order for them to be at their most effective. As part of this preparation, parents could compile a personal file containing as much information as possible about their child, including the neuropediatrician's report, school report cards, and reports from any specialized professionals: occupational therapist, speech therapist, special education teacher, psycho-educator, etc. The parents' personal observations are invaluable, as they are the ones who have known the child since birth and who spend the most time with the child. Information about the child's strengths, weaknesses, qualities, interests, favourite activities, sleeping and eating habits, and relations with siblings and friends can be very useful to the professionals. Parents can also talk to them about the emotions experienced in the relations with their child so that they may take this information into consideration when developing ways to help the child as best as possible. Parents can rest assured that sharing their observations, comments and initiatives will be welcomed, as this will show their commitment and cooperation.

Asking for help

Establishing a sound cooperative relationship with the school and providing support to a child with both neurofibromatosis and a learning disability are certainly demanding and require extraordinary personal dedication. The Learning Disabilities Association of Quebec has resources to help parents, such as support groups. They may be reached by telephone at (514) 847-1324. Parents can also get assistance from a social worker at their CLSC. They should make sure to be well supported and become allies with the professionals working with their child. These professionals will support parents and help them gain the necessary strength to fulfill their commitment with their child until adulthood.