During my monthly neighborhood support & study group meeting this past week, our local KDDs group (Kids with Differences & Disabilities) focused on first steps toward becoming strong advocates for our children with differences & disabilities.
As a group, we are reading through the book From Emotions to Advocacy by Pete and Pam Wright, a terrific guide for parents who are just getting started down the road of advocating for their children with learning disabilities, autism, ADHD, speech language disorders, emotional health issues, developmental delays and other special needs.
As a starting point for learning about how to advocate for our kids, our parent group focused a lot during the discussion on two main advocacy goals that the Wrights suggest in the book. First, your role as your child’s advocate within the public school setting is to ensure that he/she receives a free and appropriate public education (FAPE). You can read more about FAPE here.
Second, your goal as a parent advocate is to build a strong and functional relationship with your child’s school.
Now, as a parent who has spent many months educating myself on 504 and IDEA laws, the IEP process, my children’s rights as people with disabilities, etc. the first goal is something that I definitely feel equipped to strive towards. While it may be difficult to wrap your head around the idea that your child is entitled to only an appropriate education (vs. being entitled to the best education or the ideal education that you as a parent may want them to have), with some time, reading and encouragement from those who have been down this road before you, it is possible to conform your advocacy efforts to this definition which applies to all U.S. children with differences.
However, the second goal – the one that makes complete sense when you read it, when you say it out loud, when you write it on paper – the one that requires a parent of a child with differences to channel their emotions (however raging they may be) towards building a positive, effective relationship with the public school is the one that I have to remind myself of and check myself on, again and again.
Don’t get me wrong – despite countless meetings with my children’s ARD* teams, despite conversations during which my husband and I have adamantly disagreed with the determinations and placement decisions made by the ARD team for our daughter, I do feel that through it all, I have managed to maintain a surprisingly positive relationship with my school principle, counselor, SLP and even with select administrative personnel such as assistant superintendents and special education coordinators at a district level.
Despite having been told during an IEP meeting by the head of our ISD’s elementary language arts curriculum department that I have a “trust issue” with our district (which I completely agree that I do, after having been repeatedly misdirected and misinformed over the course of several years by our ISD about not only my child’s rights but also about how they can and should treat her disability under both federal and state law) – I have been working hard to rebuild trust during every ARD meeting or other interaction I have with the school.
As parent advocates, we all know how tough it is to negotiate with an ISD to receive appropriate services for your child with differences. But, when you are dealing with a “trust issue” like I am, it makes the process 100 times harder.
If you as a parent feel that the school has not been honest with you or has mislead you or done something to inhibit the process of obtaining appropriate services for your child, it’s very difficult to overcome that feeling of mistrust and to rebuild a strong working relationship with the school. It’s difficult, but it’s not impossible.
To get my head (and heart) in the right place about this, I have to go back to the basics of what I am trying to teach my own children: To forgive and forget; to let the past be the past; to turn the other check; and to be an example to others no matter how hard that is to do.
While I have absolutely NOT yet met my goal of always rising about the circumstances in my interactions with my child’s public ISD, I am striving daily to turn the other cheek, put the past behind me and focus on what is both helpful for my children and for my ongoing relationship with their school.
My goal in this effort is to foster a relationship with my child’s school that will serve to help my child as much as possible, despite the shortcomings of the special education and other services that are being provided. Shortcomings are going to exist in any educational setting, and our goal as parent advocates is to obtain appropriate services for our children as much as possible in spite of these shortcomings.
In an effort to accomplish this, here are a few rules that I have established for myself to follow before, during and after ARD meetings:
1) Listen well, takes notes and contribute your own Meeting Minutes at the end of each IEP meeting. This helps you feel that your voice is being heard and documented as part of each IEP meeting.
2) Bring your own specific suggestions regarding your child to IEP meetings – don’t just rely on the school to provide solutions. You may find, as I have in some cases, that the school is very appreciative of your input.
3) Bring resources such as articles, websites, books, etc. printed out and ready to share with the IEP team that back up and expand upon your suggested solutions for your child. By showing the school that you are not alone in your thoughts and concerns, it helps build a sense of accountability for what you are all trying to accomplish for your child as an IEP team.
4) Take time during IEP meeting to compliment the school and specific educators on what they are doing well to help your child. This helps establish a positive environment and shows that you are noticing the educators/therapists who are working hard to give your child appropriate services.
5) Follow up in writing with both thank you notes and summaries of IEP meetings. It never hurts to say “thank you” for the time and attention the IEP team is giving your child. And, writing out your own summary of the meeting and distributing it in writing is another way to make sure your voice is heard and included in the IEP team’s decisions and documentation.
6) Keep your campus staff informed when you have to elevate a concern to ISD administrators. They appreciate being kept in the loop and it aides future positive communication with your campus team.
While I am still working toward consistently implementing the above guidelines, I have already found that my own sense of trust is improving the more I use these and other positive communication strategies.
As a parent advocate, there are days when I feel that I have made great progress within the IEP setting and others when I feel as if we have been doing nothing but wasting a lot of time and spinning our wheels. But, to remain true to myself and to my children, my goal to be a strong, positive influence within my child’s school on behalf of our family has to be at the forefront of my advocacy efforts.
If I let mistrust invade my gut and remain there, it will only serve to shut down the special education negotiation process and disrupt my ability to make strides towards an appropriate education for my children with differences.
So, while I may not be ready to let my ISD catch me as I fall backwards off of a high perch, I’m trying daily to convince myself and others that it’s only a matter of time before the matter of trust is behind us and the path towards agreeing with my ISD on appropriate services for my children with differences is surely just around the bend.
* ARD stands for Admission, Review & Dismissal and is the name given for the IEP Team in the State of Texas.
Lyn Pollard is the mother of two one-of-a-kind kids with differences. She writes, blogs, talks and tweets about parent advocacy for children with learning disabilities, autism and special needs. A trained journalist and former management consultant, Ms. Pollard is currently a freelance writer and guest blogger for the Advocate magazine in Dallas, TX and the owner of www.ChalkyDoodles.com