#21 - Why is it the Parent’s job to Advocate?

Episode 21: Why is it the parent's job to advocate?

I always thought it was odd that a parent was supposed to be this huge contributor to the IEP meeting with no training. In this episode we list the 3 reasons why you need to level up your advocating game this year! Doors to The Parent IEP Academy open on January 18th!!

It’s really hard to come to a meeting where it feels like you have the least amount of information-but you feel like everyone expects you to have a say and weight and a clear opinion in that meeting.

Am I right?

I think we can all agree the whole educational system needs a revamp.

But do you notice where I’m focusing my efforts? On empowering parents to build their advocacy skills.

Because I believe that it’s going to be a grass-roots change, y’all.

In this episode, I’m detailing out the 3 reasons why parents need to build their advocacy skills-and why it’s their job to do so. I’m not saying it’s ALL the parent’s job-there is a school IEP team for a reason. But this is why parents are such imperative members of the team.

Before I get into my list-I just wanted to tell you what happens when parents aren’t invested. Now-you obviously are-I’m a little bit preaching to the choir here. But I want to tell you what’s missing when the parent isn’t able to make it.

The school IEP team feels lost. The plan for their child feels empty. Of course, we have data and information to fuel the educational side. But there is no depth to the knowledge of what that child actually needs. There is no hint for how the parent views disability, what they are doing amazing at home or what they are struggling with at home. There isn’t someone on the other side of the table to lay out their priorities and their vision for their child.

And if the parents can’t make the meeting (there has to be 3 scheduled attempts to have the meeting and more than that to attempt to reach the parent with no response), then there are bigger things happening in their lives than education.

So even if you COME to the meeting, and you don’t have an idea of how to communicate these things, you aren’t leveraging your parent role to its fullest.

1. You know your child best.
   1. So weird to say that out loud. Of course you do! Duh. But the intimidation factor of the IEP team and the weight the IEP meeting has (layers in emotions and conflict and confusion) makes you question this fact. Especially if your child is a little different at school.
   2. But you do! You know how other teams have worked with them, what strategies work best to get them to brush their teeth or what they are drawn to play with. No one else knows that. You do.
2. What happens when the school support stops?
   1. If you have a very young child, you may not have thought about this yet. But that’s why in The Parent IEP Academy we talk about creating a vision statement for your child. Nope-we aren’t talking about determining your child’s career when they are 6. But with a broader vision looking years into the future, you can be the person who leads the charge in thinking big for your kid.
   2. Of course the schools help you by talking about social security, or becoming a CNA to earn an income to support your child. But ultimately, it’s up to you to figure out your own situation. By harnessing the supports, having a vision, and inspiring your IEP team to be creative and inventive when working with your child-it will only help your child and ultimately your family!
3. You are an expert in their disability.
   1. There have been some amazing medical and social advancements in the past few years. And us therapists and teachers? We may be keeping up on interventions and strategies, but not all the time do we keep up with every diagnosis and the medical and social climate. It’s your job to educate the IEP team-because you are the one keeping up (naturally) with all of the details of a diagnosis!
   2. For example, Spinal Muscle Atrophy. In the past 10 years or so there have been new drug trials that have made a significant difference in the halting and sometimes reversing of damage of SMA. When we got a person with SMA in the schools, we hadn’t ever met someone of their age with SMA. So we looked to the parent to see what their vision and expectations were for that person. Without it we would’ve been fumbling.
   3. The other example is of the neurodiversity movement. This is a human rights movement advocating for people with divergent neurotypes (mainly Autistic individuals but ADHDers and others as well) I have just recently studied up on it-and was horrified when I found out this movement actually started in 2016 (it’s 2021 now!) When I started talking about it in schools, no one had heard of it-even people working in Autism programs.
      1. Now-I understand this takes effort, and work, to educate other people. But if you keep in mind the bigger picture-that you are doing it for your child and other children with similar struggles-then I hope you can see it’s worth it to say something or recommend a resource. Some people on the school team-may just not know anything. That doesn’t mean they are bad-it just means they didn’t know.

If one of your goals in the next year is increasing your advocacy skills-NOT just learning more about the IEP paperwork, but also looking to build understanding for the system and how you can influence it for your child-Then look into joining me in The Parent IEP Academy! I have free webinars set up to get a taste of the first module starting January 13th of 2022, and I’ll link directly to the landing page for the course in the show notes at www.parentfriendlyot.com!

Please let me know if you have any questions-I can’t WAIT to see all the advocacy happening in the next year and how much we can do together. Thank you for listening, I appreciate it more than you know!

Talk soon,

Beth