by Karen Wang

It’s IEP season. Will your child attend the meeting?

 According to the Individuals with Disabilities Education Act (IDEA 2004), children are permitted to attend their own IEPs, “whenever appropriate.” The State Department of Education in Kansas requires a student to be invited to his or her IEP at age 14 or younger if postsecondary goals or transition services will be discussed. But much younger students can also benefit greatly from being a part of the IEP process. An increasing number of school districts invite students to make a self-advocacy statement or presentation starting in the fourth or fifth grade.

How does that work when the student does not comprehend language well? Or when the student is non-verbal? How can sensitive topics be discussed without upsetting the student? The truth is that these situations are when self-advocacy is needed the most!

Isn’t Self-Advocacy out of the Reach of Most Students?

Self-advocacy, especially at an IEP, seems out of reach for many students. How does a person get to the point where it becomes a reality? I know that it took my son several years before he understood what his IEP was and why his opinions are important. I found it necessary to introduce these ideas early and repeat them often so that he would be prepared for transitions to middle school, high school and—in the future—adulthood. These are some steps that you can take to prepare your child to become a self-advocate, beginning with his or her IEP.

1.    Practice “I” statements

Advocating for oneself means explaining wants, needs, likes and dislikes. The first time my son made a self-advocacy statement at his IEP, it was a simple fill-in-the-blank worksheet with statements such as:

•     My name is                              

 •     I like                                        

 •     I don’t like                                

 •    At school, I need                         

•    At school, I don’t want             

•   At home, I want                               

•   At home, I don’t want          

Augmentative and alternative communication (AAC) offer one path to learning how to make these “I” statements. A speech therapist can assist by helping to teach the student how to say, “I need help,” a difficult concept to express on both cognitive and oral-motor levels for some students.

If your student isn’t ready this year to make a self-advocacy statement at the IEP, then first-person statements can be written into the IEP as speech goals or as social-adaptive goals so that he or she will be ready at next year’s IEP. Indiana University and the Connecticut Parent Advocacy Center have self-advocating checklists with enough goals for 10 years' worth of IEPs.

2.  Offer choices

Autism Speaks has compiled a self-advocacy guide based on best practices in the field. One of those practices is to teach decision-making by offering choices beginning early in life. For example, “Eggs or cereal for breakfast?” Over time, these choices turn into a wealth of personal experience that guides future decision-making processes.

3. Ask for help

Asking for help can be difficult for just about everyone, with and without disabilities. But no one is an island, so we all have to ask for help sooner or later—it’s a necessary life skill. Learning how to request assistance —through sign language, AAC, or verbally—can be written into the IEP as a social-adaptive goal, and it’s an important step in self-awareness.

4.  Self-disclosure

Does your student know what his or her diagnosis is and how to explain it? Knowing the right time and place to disclose one’s disability, if at all, is a sensitive topic among adults with disabilities. Self-disclosure is necessary at the doctor’s office and in crisis situations. A medical alert bracelet or necklace can be worn discreetly and shown to community helpers on an as-needed basis. A few individuals give out business cards that explain their special needs. My son has learned that he is more likely to receive assistance from peers when he self-discloses during recess or transitions at school.

5.   Person-Centered Planning

Person-Centered Planning is a set of processes that helps a person determine his or her desired outcomes in life and to put supports in place so that those outcomes can be achieved. For example, the focus person chooses supportive individuals who can be members of his or her team, and the team works together to identify obstacles and opportunities to help reach the goals of the focus person. Person- Centered Planning is already used in some school districts as early as first grade to create and achieve social- adaptive goals.

6. Practice self-reflection

Reflection and self-analysis are complex cognitive activities that can be modeled for years before they are actually put into practice. Share your thoughts with your student as you ask and answer these questions for yourself:

•    What would happen if ...?

 •    How did you feel when ...?

•    Next time, I would like to ...

•    What would happen if ...?

•    How did you feel when ...?

 •    Next time I would like to ...

7. Keep trying!

If it didn’t work out today, don’t give up! Self-advocacy is a lifelong project that moves slowly at first and gradually builds up momentum over time.

All through his elementary years, my son could not find the words to express his feelings and wishes. Then one day he told his speech therapist that he didn’t like it when she pulled him out of math class—so she returned him to class. From there, his interest in self-advocacy snowballed, and last month he was named Student of the Month in middle school for his communication skills: he checks in with teachers at the beginning of every class, takes notes, and follows up with questions via email. And he has already submitted his annual self-advocacy presentation to the IEP team.

 Karen Wang is a Friendship Circle parent. She is a contributing author to the anthology My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities.

View all of Karen Wang’s posts here: www.friendshipcircle.org/blog/author/karen.