The Mighty Logo

5 Ways to Become a Stronger Advocate for Your Child With a Disability

One of the most important aspects of being a parent of a child with a disability is advocating for them. It is our duty to ensure their civil and political rights are protected. And one of the biggest areas where parents will often find themselves championing for their children is in the classroom. With over a decade of extensive experience in advocating for my son, I am sharing my top five tips for being the best advocate you can be for your child.

I understand a few of these suggestions may be off-putting to some, but my more formal approach comes from spending four years in due process with my son’s school system. Your experiences shape your viewpoints. And while my case was largely successful, with a win in the 11th Circuit Court of Appeals, it was during that time working closely with my son’s attorney that I developed habits and learned firsthand how implementing very simple practices could not only help me support Jack better but hopefully prevent a due process situation again. Or at least ensure I am fully prepared if I were to ever find myself in that situation again.

Within a year of my son Jack’s autism diagnosis, before he even graced the doors of kindergarten, I found myself in a legal situation. While I understand the advice I give to other parents may come across as a little hard-hitting, it’s only because I have gone the distance and I want to share with you what I have learned along the way.

Hopefully these five tips will help you stay organized and on top of your advocacy game!

1. Treat advocating for your child like it’s a paying job.

This means not wearing your Mountain Dew pajama pants to an IEP meeting and yelling at the school staff. Dress nicely when you go to any meetings. Be on time. Be respectful and courteous. All the little things you probably don’t even have to think about when it comes to your 9-5 can be applied in some way to your 5-9, your job as your child’s representative. Just like you learn your company’s policies and procedures, take some time and get familiar with the federal regulations and your state’s code regarding special education. You do not have to be an expert here! Your job as your child’s advocate should be one of the most important things you are doing for them. Not to stress you out, but their lives depend on it.

2. Learn to separate your role as a parent and your role as your child’s advocate.

I know it’s hard. But let me tell you why this one is so important. When I look at myself as a mother, I am emotional. I get angry. I not only want what’s best for my child, but I want the best for them. If something is wrong, I want it fixed immediately. And throw in the fact that your child with a disability may be vulnerable in most situations. These are all normal and rational feelings given the situation. But the thing is, the law cares nothing about your feelings. It doesn’t care about whether your child receives the best services; it cares about whether they are appropriate. And while a lot of times “what’s best” falls under “what’s appropriate,” you need to understand the difference between the two.

The law also works and gets results a lot slower than what your mama or daddy heart feels is right. In order to effectively navigate the legal system, you must remove the emotional component. That’s not to say Jack isn’t my driving force. That’s not to say I don’t listen to my instincts or my intuition. What I am saying is that I have to make a conscious effort to take my personal feelings out of each situation that comes up in order to effectively advocate for my son.

3. Record all your data and IEP meetings.

I record mine for several reasons. For one, our meetings are typically lengthy, and we cover a lot of ground during that time. I have a very difficult time paying attention to what is being said, trying to take notes, reading and following along with any paperwork that we are discussing, and trying to remember all I want to ask, all by myself. It’s very mentally overwhelming. For me to fully participate as a member of his IEP team, I made the decision to record all his meetings. Secondly, my husband is unable to attend most of the time, so he can participate by going back and listening to the meeting.

I always make sure I let the administration know in advance that I will be recording, so they have the chance to also record if they would like. I also record on a device that can be saved to a computer, so if the school would like a copy, I have one to send them.

If you are unable to record or don’t have access to a recording device, my suggestion would be to type up your notes as soon as you can after the meeting. Include the time and date of the meeting, any major discussions from the meeting, who all attended, if anyone left early, what copies you received of any paperwork, data reviewed, basically everything related to your meeting needs to be included. Then email your notes to everyone who attended the meeting and state that you wanted to share your notes from the meeting and ask everyone to please review and let you know if they have anything they would like to add.

I would do this with any and every meeting you have with the school. I honestly believe a recording of our meetings could have shaved off several years of our court proceedings, or maybe would have prevented it altogether.

4. Save your paperwork and emails.

Each school year, I have a dedicated binder or accordion-type file folder that I use to save data sheets, updated and current IEPs and BIPs, work samples, therapy notes, etc. I am not even kidding when I say I save everything! Also, make sure you create a folder for each school year in your email so you can easily move all email communications to it. If you were to ever find yourself in due process, you will have to submit discovery. Discovery will almost always include the child’s educational record and any other relevant documentation.

What is sent home should look exactly like what is in the child’s official record. Unfortunately, that isn’t always the case. My son’s record had been falsified in several areas and I had no idea until we got further along in our case. Luckily, I had saved everything to show exactly what had been sent home. And our saving grace was a sticky note I happened to save from a meeting I had with the school. That tiny piece of paper was one of our biggest pieces of evidence.

Save everything!

5. Last but not least, pick your battles.

One of the best pieces of advice I have been given in my advocacy journey has been to stop and ask yourself these questions when you are concerned about a situation: 1) Does this violate the IDEA or keep my child from receiving a free and appropriate education? 2) Have my child’s civil rights been violated? 3) Has anything happened that may be considered criminal? For example, child complaining of physical or sexual abuse.

If you answer yes to any of those questions, most likely you may need to contact an attorney or advocacy group, or in the case of question 3, the police. If you’ve answered no to these questions, but still feel the issue needs to be addressed, get yourself organized by listing the problems and start some productive dialogue with your child’s teacher or administration.

I usually try to give myself overnight to collect my thoughts and talk it out with my husband or fellow advocates, then ask myself those questions. Once I can rule out those three things, then I can formulate a response or plan regarding finding a solution to the matter at hand.

Everyone’s journey will look different. You may disagree with some of these tips or think you could never implement them. And certainly, these suggestions do not constitute legal advice. However, these are the most important takeaways I had from my experience in due process and the exact steps I take to ensure I am protecting my child and his rights to the best of my ability. I hope they help you too!

Author’s Note: The information provided in this post does not and is not intended to constitute legal advice. The views expressed are my own based on my personal experiences. Readers should contact an attorney to obtain advice with respect to any particular legal matter.

Conversations 2