Autism Celebration 2012: Advocating for Our Children with ASD by Janell Locke

            When my son was going into kindergarten, it was a traumatic time - more for me than for him.  He was leaving the safety of the developmental preschool, where I knew and trusted everyone, and entering the “real world” – a regular ed kindergarten class at the local neighborhood school.  I dutifully prepared a bullet-point list of “essential” information I felt the staff at the new school needed to know about how to deal with my son.  Then, since I have a tendency to be long-winded, I weeded it down to the final product - 3 pages with 20 bullet points.  I made copies for his regular ed teacher, special ed teacher, and the paraeducator who would be working with him.  

            A year later, at the beginning of the next school year, two things happened.  First, I gave the same list to my son’s 1st grade teacher and his new special ed teacher.  Second, as a brand new special ed teacher, I received an 8-page single-spaced narrative about one of my students.  This was eye-opening for me.  Because I was now on the teacher side, my son’s teachers were much more blunt with me than his kindergarten teachers were – “Janell, do you really expect me to read this?  I don’t have time to read this.  Nutshell it for me.”  Suddenly, my carefully thought-out list became four short phrases – 

  1.  Stay calm, no matter what. 
  2. No food because of life-threatening allergies. 
  3. He’s a runner and will leave the building. 
  4. Use “first-then” for everything.
            But, even more eye-opening to me, was my reaction to the document I received.  As the parent of a child with a disability, I understood COMPLETELY this parent’s desire to share about their child and should have been jumping at the chance to read this in-depth picture of my new student.  But I was completely overwhelmed.  Honestly, I didn’t even look at it – it went straight to my “I’ll get to this when I can” pile on my desk, where it stayed until the end of the school year.  Oh, I have plenty of excuses, all of which were very valid.  After all, I was just hired 2 weeks before school started and expected to create a brand-new classroom from scratch including buying curriculum AND start courses toward my license AND attend the new teacher trainings --- all at the same time.  But those things don’t matter to the parents of that individual student. I failed them – 2 weeks into my job and I had already failed at something that was one of my prime directives – give parents a voice.  My only saving grace was these parents came to Back-to-School night and gave me the opportunity to hear from them in person about their child.

            This experience taught me three things.  First, it is better to ask for a short, face-to-face meeting with your child’s teacher at the beginning of the school year.  Stress that you only need 15 or 20 minutes of the teacher’s time and stick to that time limit.  Emails and notes are great for a written record but a face-to-face meeting is better for gaining the complete attention of the teacher.  Second, while it is tempting to share every possible contingency of what could happen with your child, limit yourself to the 3 or 4 things that your child’s teacher needs to know to survive the first week.  There will be plenty of opportunity for the other strategies later, as they are needed.  Third, give the teacher the benefit of the doubt.  Don’t immediately assume the teacher isn’t going to work with you.  Even the teachers with the best of intentions are overwhelmed and are very limited in their time and resources.  So, until the teacher gives you reason to think otherwise, assume she’s slow to respond because she’s swamped – and trust me, she IS swamped.  Give her a reasonable length of time and follow up with another attempt to address your concerns.

Prior to becoming a special ed teacher, I was the president of a parent support group – in fact, I still am.  In this position, I field a lot of questions about how to get services from the school district.  In all honesty, special ed law is VERY complicated.  The more informed a parent is, the more likely that their child will get the services they qualify for.  Even more honesty – NO teacher OR district person knows everything there is to know about special ed law.  I had a 30 year teacher/district person tell me recently, “Don’t take my word for it.  I might be wrong.  I don’t know everything.  That’s why we call [so and so] at the State Office.”  So, become informed and come to meetings with your findings in black and white.  If you do your homework, you’ll have more success.

            How can you become more educated?  The whole basis of the law is a federal law called IDEA 2004 – the official website is -- click on the section that covers your child’s age.  I highly encourage every parent to read IDEA and highlight the parts you want to know more about.  Then go to and use their search feature to get interpretations of the sections of IDEA that you wanted clarification about.  Then, go to your state’s Office of Education website and explore the resources they have under special ed.  One of the resources on the Utah State Office of Education website is the handouts from the 2010 Special Ed Law Conference, which I attended – here’s the link -- .  Talk about eye-opening.  That conference was EYE-OPENING!  I highly encourage every parent of a child with autism to read the one about autism and LRE (Least Restrictive Environment).  In fact, if you ever get the opportunity to attend a law conference, jump at it.  Utah has one every August and it’s attended by educators, college students, AND parents.

            Finally, as the president of a parent support group, I have to put a plug in for being involved in one.  This will help you meet parents who have “been there done that” as well as give you opportunities to attend classes that will help you become more knowledgeable.  Check the websites of the various national organizations to see if they have a local chapter in your area.  Contact service providers and the school to see if they know of any support groups in the area.  If you have to, start your own by putting out flyers and asking other parents to help you get one off the ground.  

            In an effort to take my own advice, I’m going to close by nut-shelling my long-winded advice:
  1. Have a brief face-to-face to share essential information.
  2. Assume the best of intentions.
  3. Become educated.     
  4. Become involved with other parents.

How do you advocate for you child?

Janell Locke is involved with the autism community in a variety of ways. She has an awesome 9 year old son with autism, teaches a special education elementary class, and is the president of the National Autism Association of Western Utah. She loves helping parents and advocating for people with autism. 

Would you like to comment?

Vcky13 said...

My husband and I are still learning the ropes. There was one school year where we felt like we were banging our heads against the wall regarding a certain teacher. There were many many meetings that year with teachers, therapists and the principal. In some cases it felt like the administration was defending incompetence, so it was crucial that both of us were present and articulate when we expressed our concerns.

Thanks so much to Janell and Danyelle for providing this great post.

Anonymous said...

You brought up something I should have included - when you've tried to work things out and are getting nowhere, bring a parent advocate with you. Ideally, it is someone who is trained in the special ed process, but you could bring anyone. This helps because you have another person helping you remember to express your concerns. It's so easy to get overwhelmed in this meetings when you are facing all those 'experts'. Having a parent advocate by your side can help you feel like you're on more even ground.

Vcky13 said...

I forget that that is an option. I have a friend in town whose son is grown now, so she is knowledgeable about the ins and outs of IEP etc. Thanks for the reminder.

Danyelle Ferguson said...

Parent advocates are fantastic! Even talking with a friend before hand to "think aloud" and organize the important points you want to address is a big help for me. I like to go into meetings with a note card with any concerns I have.

Thank you so much for your great post today, Janell!

Maurice.W said...

Joining a support group can help you deal with your current situation, I really suggest that you try it.
new parents support group nyc