I am the proud mother of two young children that were diagnosed with Autism Spectrum Disorder a few years ago. One is now in grade one and the other will register for kindergarten in the spring.

As a teacher, I already had some experience with IEP (Individualized Educational Plan) meetings which helped me a great deal with my son’s first IEP. I was able to also inform my husband which also did a lot of research on the matter so he was already well prepared to face our son’s IEP.

Over the 17 years of teaching experience that I possess, I soon discovered that most parents tend to lack both information and confidence in their role and what type of services they can obtain for their child.

One of the sad things that I also have learned is that depending on the school, the services vary and if you do not ask for them, you will not necessarily have them offered to you either.

Both my children are situated on opposite ends of the spectrum, my daughter being on the higher end making her diagnosis “light Autism” while my son is non-verbal which puts him on the lower end, diagnosed with “moderate to severe Autism”.

Having both their special needs, they also need different services. For example, my daughter needed some physiotherapy but my son benefits from the use of the sensory room at school as he is hypersensitive in several areas.

What does the term “special needs” really mean? Well, it simply means that your child needs special services and material to help him grow and reach his full potential in life. Henry Winkler, the actor known as the Fonz in Happy Days, who gave an amazing presentation as a keynote speaker at the NMSA (National Middle School Association) annual conference held at Minneapolis two years ago, explained his challenges with Dyslexia and the way education and his parents helped him out succeed in life. He also made it clear that his Dyslexia made him a child with special needs. This child has grown up as a successful man and actor cherished by his fans. One of the things that I remember the most is the fact that he thanked both educators and his parents for not giving up on him.

All this made me realize that the role of a parent of a child with ASD is not only to raise him with love and patience but also to provide him with the best services, materials and tools possible to help him live a full and happy life. And one of the multiple roles that a parent has to fill is the role of advocate. It does not matter if your child is verbal or not, if his diagnosis is light, moderate or severe on the spectrum. You have to remember that your child has a disorder that affect his communication skills and makes him unable to fend for himself. But foremost, your child is four going on five years old and sees you as his voice. The person that he can trust will fight for him, his best interests and his rights.

As your child advocate, it is not only your role to fight for your child but also to research the various schools, their services and all the opportunities that are available to your child. Do not enter the meeting room like a bull in a china shop as doors will be closing on you…and your child. Don’t be shy! Ask questions; investigate the various services that can be offered to your child. Meet with various school administrators, school divisions and the people responsible for the special needs programs.

For instance, in several schools where I taught, the following services which are provided in my son’s school were never an option there. Such services are: Music Therapy, occupational therapy activities including: bowling, skating and swimming, sensory room, physiotherapy equipment such as a swinging beam, a modified bike, a weighted vest, a special chair, a pressure vest, the use of PECS (Pictures Exchange Communication System), the participation to Special Olympics activities and more.

Another tip that I can give you is to set up a meeting with the administrator of your school prior to the first day of school. Share with them your child’s habits, needs and explain to them how to deal with their frustrations, hypersensitivities issues, needs, routines and more. Introduce your child to them. At the IEP meeting, ask them for the creation of a social story book to introduce your child to his new surroundings by looking at various pictures in advance: future teacher(s), classroom, gym, teacher aid, music room, sensory room, secretary, administrators, etc. You will see the level of anxiety diminishing in both your child and you.

Let your love for your child guide you. Be your child’s advocate and his voice.

By: Sylvie Leochko