Your are Your Child’s Best Advocate

by Marcia W. Weinstein Print This Article

One dictionary.com defines advocacy as “the act of pleading for, supporting or recommending.” Another is “the act of pleading or arguing in favor of something such as a cause, idea or policy.” Whichever definition you choose, advocacy is one of the most important things we, as parents of children with special needs, can do for our kids. It’s part of our duty, our responsibility as parents, to plead for, support and argue for what’s best for our children, especially educationally.

For your first time readers, my 9-year-old son, Evan, has high functioning autism. He was diagnosed prior to Kindergarten, but, was already involved in serious intervention before that. Speech therapy, occupational therapy, discreet trials, ABA…you name it, we did it. Everyone teased me that I should be awarded an honorary degree as a therapist because I was doing so much at home in addition to what he received outside.

I went to my first IEP meeting, filled with apprehension, and got my first taste of what it meant to be an “advocate” for my child. It was decided for me that Evan was going to enter the Autism Cluster program at Discovery Key Elementary in Lake Worth, FL. It wasn’t our home school, but, it was still close to home and had an excellent reputation for their “cluster” site. I insisted, with much resistance, that Evan be mainstreamed as soon as possible. As I discussed, argued, and pleaded my case for Evan to be gradually weaned into the mainstream Kindergarten, the staff aggressively tried to get me to do things their way and only their way. I was as kind and loving as possible, but, I pushed hard to get the team to follow my plan and we eventually agreed to a weaning process that would have Evan in regular Kindergarten part time with his typical peers starting only a few weeks after school started. By the end of the year, he spent 5 out of 6 hours of each in general education and was fully mainstreamed by 1^st grade.

The battles were not over by any stretch. I had to make myself intimately familiar with every aspect of Evan’s education. From the speech and language services, to what they were teaching him in class. I established good working relationships with both his ESE and Gen-Ed Kindergarten teachers and strove to understand the challenges they faced with him. When he started to slip, I worked with them to help him stay on grade level. By the end of Kindergarten he had made great strides and I decided I wanted him fully included starting in 1^st grade. No one objected.

https://www.parentingspecialneeds.org/article/disability-acronyms-abbreviations/

My biggest challenge was to stay intimately involved with the educational team and make sure that the IEP goals written for him weren’t “fluff”. I worked with Evan’s outside school therapists to write IEP goals that were specific, measurable, time-bound and would take him as far as he could go. The team would come to meetings with their goals already written, and I would ask that they be replaced with the goals I had written, or, at least, modified with what I wanted. The key was to make sure that I was well educated regarding Evan’s educational needs and not just asking for everything under the sun because he had Autism. Over the years, my goals have been used more often than not and he’s progressed through school very well. There are challenges, but that’s just part of every day life with Autism.

There are several key points to remember when advocating for your child in the school system.

1. The professionals in the school system are, for the most part, very interested in making sure your child gets what he/she need. People don’t work with ESE kids for financial gain, it’s a calling. And most of these people have genuinely good intentions. Sometimes they get stonewalled by the limitations of the system, and it’s just as frustrating for them as it is for you.

2. Most people working with ESE kids have a Master’s Degree or better. They are educated professionals who have experience to share. Avail yourself of their knowledge and learn from them.

3. Educate yourself as much as possible on your child’s special needs. If it’s Autism, learn everything you can about Autism. If it’s Down Syndrome, Rett’s Syndrome, Asperger’s Syndrome, same thing…learn as much as you can. The more you know about your kid’s needs, the better you can ask for what he needs.

4. Go beyond your comfort zone and ask for what your child needs. Many school districts don’t offer what they are not asked for due to their limited resources. If you think your child needs more OT, then ask the district for an evaluation to determine what they need, or go outside and get it done yourself. Schools have to recognize results from a licensed practitioner.

5. Don’t afraid to ask questions. The more questions you ask, the more you learn. There are no stupid questions and your team will respect you asking rather than guessing about something you don’t know.

6. Don’t be afraid to speak your mind. If you don’t agree with the team, then say so. But make sure you know what you are talking about. If you don’t agree with a decision, but don’t have a viable alternative, you’ll just come off looking unprepared and it will hurt your ability to advocate effectively.

7. Remember that this is your child’s future for which you are advocating. Everything you do now will affect his or her future in the education system and in life. Asking for an aide for your child early on so that he or she might not need one in the future is a valid reason. Evan was provided with a paraprofessional in 2^nd grade and has had one up until very recently. One reason he doesn’t have one any more is because the teachers have been able to effectively redirect him when necessary. He has also matured quite a bit and has learned how to redirect his behavior most of the time.

8. Learn the law if you are concerned about Special Needs legal issues. WrightsLaw.com is an amazing resource for everything legal and special needs related. They even offer free workshops periodically, and you can purchase all kinds of legal books directly from them. They also publish a newsletter with a slew of information.

9. The last point is to not let yourself get overwhelmed. If you are not comfortable advocating by yourself, then get help. You can turn to any number of agencies, depending on your child’s special need, to help you with advocacy materials and information. You can hire a professional advocate or ask one of your children’s therapists to help you. Evan’s therapists worked with me for years writing goals for the IEP and I couldn’t have done it without them then.

Just remember that you are your child’s best advocate. You are going to know what’s best in most cases and you will work harder than anyone to get them what they need. If you need help, that’s fine, but, the more advocacy comes from you, the better it will be.

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