When Life - 5 Ways to Better Advocate for Your Special Needs Child

One of the most important aspects of being a parent of a special need’s child is advocating for them. It is our duty to ensure that their civil and political rights are protected. And one of the biggest areas in which parents will 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 5 tips for being the best advocate you can be for your child.

I understand that a few of these suggestions may be off-putting to some, but my more formal approach comes from spending 4 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 11^th 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 going to due process. Or at least, ensure that I am fully prepared if I were to ever find myself in that place again.

Within a year of diagnosis, before Jack 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 5 tips will help you stay organized and on top of your advocacy game!

1. Treat advocating for your child like a job you are getting paid for.

This means not wearing your Mt. Dew pajama pants to an IEP meeting and yelling at the school staff how “they gonna give little Johnny speech,” because you know your neighbors kid got it and she doesn’t even have Autism.

Let’s start here.

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 or 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! That burden does not fall on the shoulders of the parent. Even joining Facebook groups like Ask a Special Education Attorney or signing up for the Wrightslaw newsletter can be very helpful. Both are great resources for all things legal. 

Your job as your child’s advocate should be one of the most important things you are doing for him/her. Not to stress you out, but their lives depend on it.

2. This next piece of advice is one that I think the majority of parents that I talk to struggle with the most. Learning to separate your role as a parent and the role of 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 special needs child may be completely helpless in most situations…well there’s that too. These are all normal, and honestly given the situation, rational feelings.

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 the 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 that 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. Not to make you any more uncomfortable than you may already be feeling, but you really need to be recording 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 administration know in advance that I will be recording that way 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 that 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 are able to 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. This is one of the easier tips to follow. 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, one of the things that you will have to do is submit discovery. Discovery will almost always include the child’s educational record and any other relevant documentation, including your own.

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…a sticky note that I happened to save from a meeting I had with the school. That one 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 a situation comes up that you are concerned about.

1. Does this violate the IDEA or keep my child from receiving a free and appropriate education, or FAPE?

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 any of those questions, the first thing would be to get yourself organized by listing out 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 3 things, then I can formulate a response or plan regarding finding a solution to the matter at hand.

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

Everyone’s journey will look different. Some of these tips you may disagree with or think that you could never implement. And certainly, these suggestions do not constitute as 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 that I am protecting my child and his rights to the best of my ability. I hope that they help you too!

Love and lemons,