Episode 72 – Part 2: Advocating for Your Child with Confidence – Julie Cole, Jolee Hibbard, Alexa Chilcutt

Jill Stowell: You are listening to the LD Expert Podcast, your place for answers and solutions for dyslexia and learning differences. This week, we are continuing our discussion with clinical psychologist Dr. Jolee Hibbard, communications expert Dr. Alexa Chilcutt and educator and parent advocate Julie Cole about how to advocate for your child with confidence.

Jill Stowell: I’m your host Jill Stowell, founder and executive director of Stowell Learning Centers and author of Take the Stone Out of the Shoe: A Must-Have Guide to Understanding, Supporting and Correcting Dyslexia, Learning and Attention Challenges. 

If you missed our conversation last week, be sure to go back and listen. These three women have been where you are as a parent of a neurodiverse learner, trying to manage their emotions and communicate their message effectively in order to get the right help for their children at school. They are passionate about combining their mom perspective as well as their professional expertise to empower other parents on their journey. So, let’s pick up with a recap.

Our guests Jolee, Alexa and Julie co-authored The Language of Advocacy: Speak for Your Child with Confidence. This is a workbook for parents navigating IEPs and the process of getting help for your child at school. This is an incredible, approachable tool that meets you where you are emotionally and gives you clear strategies for effective communication, so that you can be heard and your child can get the help they need. Make sure to get a hardcover copy on Amazon.

In part one of this episode, Dr. Jolee Hibbard talked about the emotional aspect of being a parent of a child who struggles. She shared that our emotions as a parent are vicariously tied to our children and can inadvertently create barriers to communication. So, awareness of our emotions and learning how to keep them in check is going to be an important factor in sharing our child’s needs and working collaboratively with the school. 

Dr. Alexa Chilcutt picked up where Jolee left off with strategies for communicating effectively. 

Today, we will continue the conversation and tie it altogether with Julie Cole and her expertise as a parent, educator, advocate and IEP consultant. Julie has a great story to tell and empowers parents with all the tools she wished she had known when she started down the IEP road with her son.

So, listen all the way through the episode until the end to hear how to prepare for your IEP meeting, what to do and not do and how to approach the IEP team so that your child gets what they need each year.

One of the things that is really intimidating about IEP meetings is the language. I remember as a brand-new special education teacher, I was sitting in a meeting with all of the special education department and I just felt like I was being buried under an avalanche of acronyms. I thought, “Oh my gosh, I’m never going to know what they’re talking about,” and it was so overwhelming and so intimidating.

So, Julie, your background is in education and you have really sat on all sides of the IEP table as teacher, administrator, mom, advocate. How can parents be empowered in the IEP process so that they’re actually setting up the environment to be collaborative instead of a power struggle or intimidating?

Julie Cole: Great question. This third part of our workbook actually walks you through from educating yourself. I’ve kind of tried to simplify as best as I can into five different Es of advocacy and the first one is educate and that’s the first one that you really want to dive into and in the workbook has a list of acronyms. It’s not all-inclusive because there are different districts that do things a little bit differently.

There is a hint though that I love to share with families and if there’s ever an acronym that you come across in a document or online, you simply Google “special education” with that acronym and it will come up with the meaning that you’re probably looking for.

I think it’s important for parents to know that it’s the team’s job to educate them on acronyms and it’s OK for the parent to say, “Hey, you know what? Can you remind me what that acronym is? Can you remind me how that implies?”

It’s hard. It’s hard as a parent because you want to come in feeling confident and the minute you say, “I’m not sure what that means,” it kind of makes you sit down a little bit lower. But I think the team and, in my experience, teams are willing to explain. They assume that you know what it is unless you ask differently.

So, it’s important to make sure that part of that education is yes, learning and doing your own research but also in the moment pausing and saying, “Can you please explain?” and that’s a hard thing to do but it’s a very useful thing to do and it’s a very important thing to do.

Just understanding the acronyms. Also understanding what the qualifying conditions are to get an IEP, that can be extremely overwhelming. As a mom, you go in and you say, “Well, my child struggles with reading and we have an outside diagnosis of dyslexia. But you want to put them under autism. Well, I don’t understand.” 

It's understanding that a medical diagnosis doesn’t guarantee school services and challenges that children have had to get in the way of them accessing their learning at school in order for the school to have to apply those interventions. That’s something that’s very hard to understand. I struggled with it. My son Matthew qualifies for his IEP under autism and speech and language impairment.

He doesn’t have a medical diagnosis of autism. We went that route and he didn’t. That wasn’t something they found. But because of his pragmatic language difficulties, that’s the best fit for his IEP at that time and that’s a hard pill sometimes for parents to swallow but when you understand that what they see on their paper, on their qualifying factor for their IEP isn’t a label that’s going to define them for the rest of their life, it’s simply paperwork that gets them what they need and doors that are open.

When parents move past that, they can understand a little bit better about, OK, we will put them under autism or speech and language or many times I hear, “Well, my child is anxious and we have school refusal.” Yes, so there’s anxiety but they want to put them under OHI. What is that? That’s other health impairment. That’s kind of a catch-all which is OK. So, helping parents know to move past the qualifying factor in order for those doors to be opened. That’s something that is important for parents to learn to educate themselves.

Then knowing what to expect, knowing what to expect with the process. It is a long process. I tell clients all the time, “Get a pair of sneakers. Lace them up because it is a marathon. It is not a sprint.” It takes time. There are timelines. There are things that we can’t control and we have to embrace that we can’t control what the government has laid out.

When parents understand that this system is a reactive system. It’s not a proactive system and that has been one of my biggest frustrations because as moms, as caregivers, we know what our child needs. We know what they can benefit from but if it’s not presenting in an area at school that shows a challenge where the school has to react, the school is not legally required to implement those interventions and that’s a hard thing to know. But if you know how to work that system and speak their language, for instance when parents say, “My child is not in their least restrictive environment because [their reason],” “My child is not receiving a free and appropriate public education,” otherwise known as FAPE because …

Those are our phrases, that all of this is in that book to help you write a letter to express those concerns to school officials. Something else to help parents understand and embrace this process, it’s all about data. It’s all about data and that data shows the deficiencies which then drives the goals. How we write goals is based on the deficiencies from the data and then depending on what goals are come up with, that drives the services that are then recommended and implemented.

Understanding that wheel is also very helpful and when you educate yourself on, “OK. What data can I show? What emotion can I take out and what data can I show?” Now data can be creative. Data can be recording your child having a meltdown. It can be recording your child not doing his homework because of executive functioning issues.

Those are all valid data points that school teams have to consider and I always encourage parents to keep logs of behaviors, of things that are happening because schools will come to you and say, “Well, he had a rough day.” You can maybe look back with, well, he didn’t have a great breakfast or he didn’t sleep well or there’s some sort of other emotional thing happening at home that can play into this and all of those pieces or at-home pieces are what you can bring to the team, bring to the table to help fit those things together when it’s time to create a plan.

It's important to note the federal government, there are two laws that guide schools to outline how to do services and both of those laws – you know who they place number one on the team? Parents. Not schools. The parents are the first people listed and that tells me a lot. That tells me that those lawmakers said that that parent is a very, very important person on that team and it’s important for parents to realize they are just as important of a member of that team as anyone else sitting around that table.

I said a little bit about it before. Everyone comes to the table as an expert in their field, whether it be the speech pathologist, the OT, the PT. You’re the expert at your child and your opinion and your input is just as valid as anybody else’s. So many times, teams come to the table and I use this analogy all the time. They come to the table and they say, “Here, eat this dinner. Here, take it.”

They haven’t shown you the menu. They haven’t shown you the ingredients of what’s in those things that they’re offering and they just expect you to eat it without asking questions and by asking curious questions in a strategic manner where you have an end goal in mind, you can say, “OK, thank you so much for your time. I appreciate all of the work that has gone into this. Help me understand why you’re offering group speech and not individual. Why is it that a pushed in-service into the classroom where you go into my child’s class is more beneficial than taking them out?” and again goes back to that education piece of the continuum of services which is a big buzz phrase. Knowing what’s on the menu. Know everything that’s on the menu and then you ask that team. OK, please tell me – justify with data why you’re offering what you’re offering because I want to be a part of what I think my child needs and that circle of “I know from my perspective. You know from your perspective. Let’s get it all out on the table and figure out if in fact that’s really the best choice.” I know I have so much. Oh, my goodness. I have so much. 

Jill Stowell: It’s so incredibly helpful. Yeah, just what you were just talking about, you know, people do come in with their own idea about it but really we do have to have the whole picture to make the best decision about how to meet that need. So, I really appreciate you saying that and of course for the parent to be able to ask, not in a defensive way but to really understand. You know, sometimes there might be a really good reason why being a part of group speech is going to be more beneficial than individual speech. But we want to hear what that reason is so that we can see it as a part of the whole picture.

Julie Cole: Absolutely. Most times, teams have met prior to meeting with you as a parent in an IEP. So, they’ve already had that conversation and you are just asking to be made a part of that conversation. Most of the time you will agree but it’s still important for you to have ownership so that you can then put that onto your child and say, “Guess what we’re going to do for you and this is the best thing because these people on your team have said that this is going to work well for you.”

I get asked all the time, “How do I know what’s best for my child? How do I even know that?” and the second part of my – my second E is envision. So, you get to in the workbook walk through learning everything that’s available to then envision what you think is best for your child and to gather that research and that data to then take to the table. This is what I feel is best. This is why I feel it’s best. Let’s have a conversation about it because really envisioning what is best for your child is kind of a roadmap and then when the team comes together, we solidify that roadmap.

Like I was mentioning before, knowing where you want to be at the end is going to help you get that roadmap, to kind of build backwards, if you will.

Jill Stowell: Right.

Julie Cole: Yes, our immediate need for if it’s speech, if it’s for articulation. Yes, there are nuts and bolts but at the end of the day is your goal. Do you have a non-verbal child who you would like to utilize two and three-word utterances? Is that your endgame? And knowing that your endgame can change as the child gets older. Our endgame initially wasn’t that high school diploma because I wasn’t convinced that was an option. Our endgame initially was we need to speak in sentences and have conversational language. We did that. We checked it off, which was amazing. I didn’t know if that was going to happen and I’ve always approached the team with, “This is what I would like. I would like your feedback on if you think that’s realistic because yes, I’m the mom, but I want to acknowledge your role on the team. You’ve spent time studying speech pathology. You understand Matthew’s pragmatic issues. Do you think this is reasonable? Yes or no? Why or why not? And help me understand.”

I use that phrase all the time. Help me understand because I want to understand and I want to acknowledge what you’ve done, but I also want to make sure you’re aware of where we’re coming from. 

Something that’s really important I get asked all the time is modifications and accommodations and there’s a very murky line and it’s important for parents to understand that modifications change what the child is learning. So that is a change to the curriculum. It is a change to the amount. It could be a watered-down version and that doesn’t highly impact a child until they get more on the high school track because if a child has modifications on their IEP, it impacts their ability to get a high school diploma.

The reason I mentioned that is because when you’re having so many modifications early on to make things easier, what’s happening sometimes is the gap is widening in what’s being taught. So, if a child is having modified curriculum, the grade level standards they may pick and choose, so there’s going to be educational gaps which will then be harder to make up the older you get, which will then make that decision of a certificate versus a diploma. It kind of makes it for them not because they’re not able to do it but because they haven’t been exposed to the curriculum.

So, I always encourage parents when they’re looking at goals, also look at your grade level standards and see where is your child with those standards and where are the deficiencies because when a goal is on an IEP, there’s accountability. When there’s accountability, there’s action and things happen. If it’s not a goal and it’s just, “Oh, well, we covered that in the curriculum,” that’s fantastic. My child may not get it when you cover it in the curriculum. So, I would really appreciate – this is a deficiency. We have data that shows it’s a deficiency. I would like a goal and I’m not going to write the goal for you. Could I? Yes, but I have learned because I was not perfect. I’m still not perfect. But when I started out, I was the mom both guns loaded coming in with my goals in hand and that really put the team off and I learned from that. That this is an area I would like you to address in a goal versus here’s a goal, do it. Big difference.

Jill Stowell: Big difference.

Julie Cole: Big difference. 

Jill Stowell: Yes.

Julie Cole: All different kinds of plans too. It could be very overwhelming. There is an IEP or a 504. What’s the difference? It’s a big difference. Accountability with an IEP is in place. With a 504, not so much, because 504s are only designed for accommodations to help children access their learning. IEPs address deficiencies by having goals and services. There are no goals and services on a 504. Is your child having health issues? Then maybe they need an individual health plan. That is something I see all the time for whether it be kids that have Epipens for allergies or gluten issues or inhalers for asthma. Those things can be addressed and there’s a formal plan to do that.

So, as a parent, you can feel secure about I know where the medication is. The nurse knows where it is. There’s a plan for who’s going to administer that, who’s going to call me, what the plan is according to my doctor. That’s a huge thing, if there’s health concerns. Behavior plans, those are all over the place, right? Especially kids you see with ADHD. You know, let’s throw a behavior plan at them. Well, OK, let’s put some plans in place. But how are those plans formulated? Parents should be asking those questions of, “OK, where did you get this data? Did you do some observations? Were those observations at different times of the day, different days of the week? What is the reason behind the behavior?” 

And a lot of times schools will do a functional behavior assessment or an FBA, another acronym, which is important to do to gather data. But again, looking at as a parent, I would like to see a process of what are you going to do to gather that data. What is it that you’re looking for? Are you looking for school refusal? Are you looking for outburst? What are the things that you’re looking for? Because maybe as a parent, I can help provide what triggers are.

My child, if he is taken away from a preferred activity to do a non-preferred activity, you’re going to see a reaction sometimes. So, let’s look into that and look at the verbiage that we’re using to make that transition and maybe we need something in place.

So again as a parent, important to not just let the team go blind when they’re assessing these behaviors but actually equipping them with the information they need. Looking at that child, this is going to help you. I recommend there’s a link to a one-sheet behavior student success plan that I recommend all of my clients fill out for their teachers at the beginning of the year.

This is what acting out looks like. This is what can cause that. They’re like the red, yellow and green. You know if we get to red, this is what has to happen. Just to equip them. Let’s set them up for success. Let’s come out of the gate with getting them what they need in order to help our child, right? We don’t want to hold back and wait for that phone call of he threw a chair or he hit a friend or we want to be proactive and the more parents …

Jill Stowell: Absolutely. Yeah, I love that you’re saying let’s set the teacher up for success or the person working with my child up for success because that’s setting our child up for success too. Yeah.

Julie Cole: Absolutely. We want to come in with, hey, I’m going to push my sleeves up as a member of this team and be helpful. I’m going to give you everything you possibly have to make him successful. I’m not going to give you a two-inch binder because that’s too overwhelming and I did that with Matthew. I said, “Here’s Team Matthew. Look, here’s a binder.” I was all proud of myself and then I went, “Oh wow.” That was in kindergarten and I went, “That probably wasn’t smart because they’re not going to read it,” right?

I was trying to be helpful but I think I overwhelmed them. Well, put it all on one sheet. What are my challenges? What am I working on right now? What works for me? What doesn’t work for me? Helping them with just that one page and giving the communication. Really opening that door. The beginning of the year we sent a “Welcome to Team Matthew,” to all of his teachers. Hey, here’s Matthew. He’s going to tune out because you’re giving him too much language at once. He’s not being disrespectful. He just doesn’t understand what you’re saying. So here’s what you can do and I’ve never encountered a teacher in his 13 years of education that has not been thankful for that one page of, you know, here are the keys to getting to Matthew’s inner circle.

Jill Stowell: Yeah, yeah. 

Dr. Alexa Chilcutt: Sorry. Julie, I was going to say and I think that’s why as a – just me looking at your stuff, as we put the workbook together, that is once again why it’s a workbook, right? It’s that you’re giving the parents these tools for that one sheet. You’re giving them the – you know, to take it with them. So, I just kind of want to point back to the utility of having all of this information but also getting parents to kind of plug and play as they go through this and kind of how they apply it. Yeah. Sorry. I will go back.

Julie Cole: No, absolutely. And I know a lot of – when I get on a roll, it sounds overwhelming but that workbook really does take it piece by piece and you don’t have to work through the whole workbook in a day, right? It’s a process, remember? We’re on a marathon. So, you’re on mile two and that’s OK if you stay at mile two for a hot minute and process and feel things out and take time to really envision what it is that your child is needing.

It's a process, right? There are timelines in the workbook where we understand that yes, you can ask for an IEP. There’s no such thing as an emergency IEP. I hear that all the time. The bottom line is when you ask for an IEP, they have 30 days to get it on the calendar and they’re in compliance. Thirty days and that counts weekends. It just doesn’t count like school holidays but they will most likely take their time to do that.

When they’re assessing, they have 60 days after you’ve signed that assessment report to do those assessments and to get you that report. I always recommend that you ask for that report ahead of time because like we talked about, when you walk into a meeting after your child has been assessed and they hand you a 45-page document of numbers and you just – A, it’s hard to see it in black and white where your child is deficient but B, you’re not really processing a lot of what they’re saying because you’re focused on the numbers and having a chance to really marinate on those numbers beforehand, so that you can ask intelligent questions when you go into that meeting, not only does it provide a more efficient meeting. But it allows you to see that report through more of an objective lens and not such an emotional lens.

So, a tool that I always – and they are entitled to – you are entitled to that report ahead of time. Technically you’re entitled to it five days ahead of time. Most schools don’t have it done in time, so they get around that. So, I always ask for 48 hours, knowing that if they come back and say, “Oh, we just can’t do that. We will just give it to you at the meeting,” then as a parent you say, “OK, I understand you’re busy. I understand that my child is not the only one on your case load. Let’s just go ahead and push the meeting back until you’re able to do that because it’s that important to me that I come to the table educated on my child’s report.” 

That will put a fire under their tush because if they’re pushing it up to that 60 days, if they go over that 60 days, they’re no longer in compliance and that’s not your problem. That’s the school’s problem. So, then all of a sudden, you will get pieces of the report, get them in, which is fine. But again, just not the, yes, you will because I’m entitled to it. It’s I understand you’re busy. My child is not your only case so let’s just push the meeting back until you’re ready. I’m OK with that. I will give you another week. Oh, we can’t do that. Well, I’m sorry. You had 60 days to do that. So it’s really important to me and again most schools will say, “Oh, OK, we’re going to see what we can do and reports will come in on a Sunday night,” or whatever. But it’s important for parents to be able to stand up and say and know their right. I know that I’m entitled to this and it’s important for me to have it.

The next E would be empowering yourself with resources because there are so many but they can be overwhelming, right? There can be so many. I really hope that parents will look at – not only in the book they see they have their district resources, their state resources. There are federal resources and in my experience, when parents type in – when a contact information, there are real people at the other end of that email that will answer you and put you in the right direction, which is amazing.

Understanding your rights as a parent, I get asked all the time, you know, “Well, they want to move my child to a different class and I don’t think it’s the right spot but they’re asking me to sign.” Don’t sign. Don’t do it. You’re right to stay put. Your child has a right to stay put where they are until an agreement can be reached. So never be pressured into signing anything. I tell clients all the time if you’ve learned anything from me at all, don’t sign compliance and don’t sign that consent for anything that day, anything, except for that you were there. That’s it.

The only thing you can say is that you were there and then you allow yourself that time to marinate on that information. Prior written notice is a gem of a resource where if they want to change something on your child’s program, they have to provide you PWN or prior written notice which is a letter that has data on it that says the reason why they want to move.

Most time they just want to say, “I want to move them because, oh, they will be a better fit in there,” or “Oh, they have more room in that group or that speech class.” Well, no, my job is not to make yours more convenient. I want to look out for the best interest of my child. So, I’m going to need prior written notice before you make that change.

I think that might be most of what I wanted to share. There’s so much and you can dive into so much more under each of those things. But again, using that workbook at your own pace to really work through, to make it individual for your child. It is an individualized education program, which means shoving a child in a preexisting box because that’s what’s funded or that’s what they offer doesn’t make it right. 

I always say, you know what, maybe you have to make a new box. Maybe it’s time for a new box, for a new group of kids. Maybe you need to have a box with just my child because that’s what he needs and that’s their job. It’s their job to do that and your job to push your sleeves up to help them do that or lots of times teams will be hesitant to make changes or to meet needs because they feel like their hands are tied, whether it be ineffective administration or district policies that are unclear and you simply say, “I hear you. I get it. I can’t imagine what it’s like to try to do your job and feel like you can’t. So, I’m going to help and I’m going to go to the next level not because you’re not doing your job but because I feel like you need to be empowered to do your job and as a parent, I’m going to help you do that.”

Jill Stowell: I love that. I mean you are so clear and direct about everything that you’re suggesting and doing it within the framework of, “I’m going to help you do this. We’re going to do this together,” and I just really, really appreciate that. There is so much here around IEPs and I’m sure that some of you listening might be saying, “Oh my gosh, how am I going to remember all this?” But truly when I first picked up this book, this workbook, The Language of Advocacy, and I read through it and I just thought, “Oh my gosh. I just think I need to get this for every single parent that comes into our learning center. It is really easy to digest and all the key things that you really need.” So, I’m so grateful that this is out there now and of course this podcast is recorded. You can go back and listen and take notes because there’s just so much there. 

I want to give you some takeaways for today. Advocating for your child is hard. With some tools, it can be done effectively and with less stress and here are some of those tools.

First, recognize the factors that affect you as a parent of a neurodivergent child. Second, understand what barriers you are facing in your communication with the IEP team. Third, learn communication skills so that you can get your message across without burning bridges and truly for the best outcome for your child. Fourth, learn the IEP language and learn about the IEP process.

Now I’m going to confess I pretty much took that directly from The Language of Advocacy because I just couldn’t improve on what Jolee, Alexa and Julie said. So, I really do want to encourage you to go to Amazon, get a copy of The Language of Advocacy for yourself. As they’ve said, you’re probably going to want to get a hard copy versus a Kindle version because you’re going to want to write in it as you read and reflect on your child’s needs and the caregiver’s role.

Jolee, Alexa and Julie, it has been such a pleasure talking to you. I think this is just the tip of the iceberg on these topics but as I said earlier, this is going to be an episode that I think parents are going to want to listen to over and over and share with others. I know your book, The Language of Advocacy, is a work of the heart and I would love for each of you to just share a final thought for parents from your heart.

Dr. Jolee Hibbard: I’m happy to do that and again, thank you so much for this opportunity to share our message. I think a final thought that I want to share is taking care of yourself and your emotions helps you to be able to communicate effectively and take care of your kids. The more that you can do that, the better off you’re going to be.

Jill Stowell: Yeah, and I think that is actually very good life advice no matter what. 

Julie Cole: I think walking away from today, I hope that parents understand to listen to their mama gut, their parental gut and what you know in your heart. If you feel that your child’s needs are not being met, to act on that and to do what needs to be done to speak up and to understand that your voice is just as important as anyone else on that IEP team or any of those caregiving individuals.

So, listening to that voice inside and acting on it and not just, “Oh, we will give it more time,” or “No, I don’t think so,” or “No, I don’t want to make a fuss,” or “I don’t want to ruffle feathers.” It’s not about ruffling feathers. It’s about you’re that voice for your child and especially when they are super little, you’re the one who’s going to advocate best for them because you’re the one who knows them the best. So always listen to that voice.

Jill Stowell: Well, thank you. Thank you. This was amazing. I’m so grateful for all of you. At Stowell Learning Centers, we help children and adults eliminate struggles associated with dyslexia and learning differences. We want to make this journey easier for you. Connect with us on social media and on our website StowellCenter.com for information and free resources. If you found this episode valuable, please like, share and subscribe. The struggles associated with dyslexia and other learning disabilities can be eliminated. Let’s change that narrative together.