Special Education Advocacy Podcast

Transcript

Marsh Naidoo (00:10):

Hi guys. Welcome to the Raising Kellan podcast. My name is Marsh Naidoo and I blog at raisingkellan.org where we curate resources for parents raising children with developmental delays and or disabilities. For those of you who are new to us, welcome. This podcast and blog started off as a passion project in 2019. As a mom and a physical therapist, I wanted to share the resources that I found beneficial in raising my son Kellan. As always, remember, the information provided here is purely educational, and if you are seeking advice for your specific situation to always contact a trained professional. In today's episode number 70, you're going to get to meet Ashley Barlow who hosts the special education advocacy podcast. Ashley brings to the table her unique skill set. So guys, grab that cup of coffee, put your legs up and relax and get ready for some awesome conversation.

Ashley Barlow (01:31):

How are you?

Marsh Naidoo (01:33):

I'm excellent. Ashley, thank you for joining me today. First off, I wanna let you know that you are my to-go resource as far as IEP plans of concern and just the unique skill set you bring to the table in terms of being a mom, being a teacher, as well as your legal skill. You've helped me tremendously in my journey. So welcome to the Raising Kellan podcast.

Ashley Barlow (02:04):

Thank you. Thank you so much. I'm happy that it can be helpful that you're getting good information and that you feel supported. So that's always, that's good feedback To get <laugh>

Marsh Naidoo (02:19):

Before we get things started off, would you kindly introduce yourself?

Ashley Barlow (02:25):

Sure. So my name is Ashley Barlow. I am a special education attorney. I'm licensed in Kentucky and Ohio. I have a law practice here where I work with my dad. I started off as a general practitioner and several years ago I decided to kind of shift my focus to special education representation. So at the moment in probably hints fourth, I do special education work. I do special needs estate planning work, and I do a little bit of divorce work, still mostly as an expert witness in cases with kids with disabilities. About 85% of my work is in special education. I used to be a teacher. I taught German before I went to law school. And then I also am the parent of a little guy that has Down syndrome. My son Jack is 11, getting close to 12 and I have another son, Griffin, who is 15. Yeah, so that's what we do. I started Ashley Barlow Company as a second business in 2020 because everybody starts businesses and pandemics <laugh>.

(03:48):

The beginning of the business model was really for me to kind of figure out a marketing thing for my law firm and then it grew into fulfilling a need that I saw is really important. So what we do is we provide free and remarkably, reasonably priced resources to parents and to anybody that sits at the IEP table. And the reason that we do that is because parents' involvement is really, really important. It is stressed in federal law. It is stressed in guidance documents and time and time again, I was getting cases where parents would say, I don't know where to start. I don't know what resources are out there. And so I thought I need to get more information into parents' hands in a way that's accessible to them.

Marsh Naidoo (04:41):

And even though we might be well versed in IDEA the translation of law into an IEP is not always as easy as it may seem. Ashley, I'm not sure what the emotions surrounding the IEP for you may have been, but for me it is a, no matter how well versed you feel, how together you may feel on certain aspects, there's always that feeling like you are facing a battle for your child. Talk to me about that, Ashley. How can parents be better equipped? Is it possible at all, in your opinion, to lessen some of that emotion going into an IEP meeting or is that just like a sympathetic response? What are your thoughts about it?

Ashley Barlow (05:37):

I think that's a really good question and really that's one of the reasons that I started Ashley Barlow company. So what I think the real kind of answer to that lies in marrying the objective framework of the law and the research and the teaching strategy and the content, the actual stuff of special education with the subjectivity that parents feel. So my journey as a parent in special education started horrendously. My preschool experience was awful. My son's preschool experience was awful. Thank God. Very few people from that experience still are employed by our district, but it was awful and I felt like I didn't want to advocate because I could have 20 more years of advocacy in our little school district and why am I gonna fight for preschool? And I truly wish that I had reframed my mentality about that because it was ineffective and it started us off poorly.

(06:46):

And what it did was it yielded a really stressful and awful kindergarten transition. And so through my own experience and then in helping probably close to hundreds of clients over a hundred and probably close to hundreds of clients, what I've realized is that we need to keep that empathy. We need to keep the subjectivity that we bring as in as parents, Parents are experts on their children, but they also bring a really important amount of emotion to the IEP table. And listen, Congress wrote the word parent 450 times in the law. If one thing is clear, an idea, it is that Congress wants parents to be involved. But there's also this onus that is very important to know special education, to know the law, to know the mechanics, how to progress monitor, and how to read evaluations. So if there's one tip that I can give to parents, you already have that subjective stuff done. But really learn the objective information, learn the lot and learn the content.

Marsh Naidoo (08:01):

Ashley, what resources would you recommend for parents wanting to find out more about special education?

Ashley Barlow (08:11):

Yeah, I think it's just like we do in education. You have to learn the way that you like to learn. So I learned by reading books. I went to a bunch of colleges here in the greater Cincinnati area and I begged, barred, and pleaded to buy books on special education practice and special education law. It's very difficult, surprisingly difficult to get those if you are enrolled for classes, I think because if there are 18 kids in the class, they buy 18 books. And I took number 18, but I was like, well surely somebody won't buy the book <laugh>. And so I got 'em. So I learned by reading and then I outlined everything at Ashley Barlow company. I have two online courses and online courses are a way that people are starting to or people are really learning. There's that whole website masterclass. And so I have a course that is start to finish nuts and bolts, special education law with a lot of advocacy tips infused in it, how to keep your binder, what that crazy binder is, how to progress monitor, what to communicate to school from the parent's perspective, that kinda stuff.

(09:22):

But it also goes through eligibility and evaluations and parts of the IEP and what do process looks like and those things. So there's plenty of books out there. I always tell people, just Google it and hop on Amazon, find the book that kind of speaks to you. There are online courses like mine, there are plenty of blogs, there's Wright's laws. So rights law is W R I G H T S L A W. Pete Wright tried the Shannon Carter case before the United States Supreme Court and he then developed this beast, this really valuable resource of rights law. So he has lots of books and he has a website. And I think the coolest thing about the website is in the top right corner there's a search bar. So if you have a question, if something arises, maybe it's the least restrictive environment, maybe it's behavior supports, maybe it's what is a functional behavioral assessment you can type that into the search bar and you're gonna find just a wealth of resources. Any article that's on rates law on that topic will come up.

Marsh Naidoo (10:29):

And guys, again, Ashley's podcast is called special education advocacy with Ashley Barlow. What really speaks to me is the way you frame advocacy where communication is seen as the primary strategy and that when you go into the IEP meetings, it's not about what I need to get specifically it is about what needs to be done that's best for my child. And so that, that's been a big takeaway for me. And the other was being prepared by having a future planning statement, which was actually something that I had not considered prior to listening to the podcast. Are there any kind of tips or any message that you would wanna give to a parent that's raising a child with a disability? Just some words of encouragement, Ashley, as to how they can best prepare to navigate the cost.

Ashley Barlow (11:44):

So I mean that's a really good question and the first thing that I think is really important, I think you have an important question because this can feel incredibly overwhelming if you have a child with a specific learning disability like dyslexia, dysgraphia or dyscalculia, something like that. It's sometimes even hard to understand that the law says that your child has a disability that's hard to understand and it's hard to cope with. The diagnosis phase can be extremely stressful and extremely emotional. And then you know, have to find the balance between we are a family with a child with a disability, and we are a family that still has the same values and interests that we had prior to the diagnosis. It's like before diagnosis and after diagnosis. And then you have this big during the diagnosis emotional component. And then we also have to fit in the rest of the things.

(12:58):

I'm still a mom and a sister and a friend and an attorney and a surfer. I like to surf in the shallow and don't get too excited when I say a surfer. But the other things that we, we still have to fit in. And then what happens particularly to people with my kind of personality with this type A driven by anxiety kind of personality is we're always ruminating, we're always thinking about those disability-specific things. My son struggles with behavior quite a bit. He has ADHD, he has anxiety, he's extremely impulsive and he's oftentimes dysregulated and he has a hard time knowing when he's dysregulated. And so I'm constantly thinking about how to keep him regulated and what behavior strategies might work and where we're going next and what if this doesn't work and what's this gonna look like when he's an adult.

(13:57):

And before I know it, he's 65 and he is stuck in my basement. He hasn't left in a month and a half. And my mind just kind of goes there and then I don't realize I'm doing it all the while I'm trying to practice law or I'm trying to just go to a concert with a girlfriend. And so I think being able to put your special education experience in a specific spot to literally compartmentalize it is a really good strategy to dive in and to know it and to feel it and to live it and then to be able to say, not today disability. I've got these other things going on. So treat it with respect. Yes, but any other thing in your life, any other obligation or emotional package that you're carrying, see if you can't treat it with the kind of respect that you also put it away for a second.

(15:02):

And that's much easier said than done other. That's the philosophical answer, that's the self-care answer. But I think from a practical standpoint, what I preach at Ashley Barlow company is to communicate, communicate, communicate. So special education advocacy has to just become a way of life. And so yes, I say compartmentalize, but I also say just it's just kind of part of what you do then. So I think particularly if your children are young and perhaps if your children develop mentally and require constant communication from you, I think you should communicate with your IEP team on a very regular basis. So maybe that's weekly. I've got a communication bundle on my website and I recommend this thing called a Sunday email. I think you should communicate about progress monitoring. I think you should communicate updates on medical history, medical experience, and therapeutic experiences. Are we making progress in private speech or are we not that we started a new medication?

(16:08):

I think you should communicate about experiences that the child has. How are we doing in soccer? Did we start golf and do we like the new golf instructor? What does the new golf instructor have? What's the secret sauce that the golf instructor has that is helping with behavior support? Could we maybe generalize the skills that we're learning in golf into the gen ed room or into physical therapy at school or something else? So our jobs as parents are the general contractors of adult life, the transition to adulthood, and the actual adult life. And we have to plan that. And we also of course with our children and we also are the general contractors of what happens at home and what happens in the community. So school does school and we do home and community and all three of those kinds of components have to come together in this beautiful Venn diagram. <laugh> of life. Life is at our kids' ages homeschooling community. And so if we can blend together by communicating what's happening at school, him and community, we're gonna get a really great experience for our children. So I think having a healthy connection and a healthy relationship with our advocacy is important, but I also think it just becomes a way of life. And once you get good at that communication piece and the kind of general contracting piece that just kind of becomes a rote thing that you do.

Marsh Naidoo (17:46):

So let's see. Some of the other questions that I had were related to the continuum of care as your child ages and you start to think about those transition years and even though you as a parent may not necessarily wanna face it or think about it, what happens to your child when you are not there? So what does that look like? Any advice to parents on that particular point? Any pointers?

Ashley Barlow (18:20):

Yeah, so I think evaluations are really important at that age. I think I have seen so many transition plans that only say Okay, so I get a lot of transitions for boys with autism. I don't know why, but oh, probably 90% of them say that the child's goal is to work at a video game store game stop. I mean it's remarkable. Like you could almost say a hundred percent of 'em say that. And what's funny is a lot of my clients that have this in their transition plan would be horrendous at customer service. And the burden of customer service would be a really bad match for an unhealthy match for the child. And so the parents come in and say, Okay, somebody wants to return a game that my kid likes. My kid is going to jump all over them about how it's the best game in the universe and why would you ever wanna return it? And they'd start calling 'em bad words. And I'm like, right, because transition plans oftentimes are oddly too centered on the child's preference and not centered on the child's profile. So that's kind of good. I need to write that down <laugh>,

Marsh Naidoo (19:43):

I like that.

Ashley Barlow (19:45):

So we need good evaluation data. But a problem that happens is schools either don't own or don't have access to or don't know about evaluations. And so oftentimes I'm saying to schools in meetings, where can we get better evaluations? Can we go to vocational rehabilitation? Can we go to social security? Can we go to the Arc or to some other agency that is going to provide job support? Who else owns these tests and can give us information? There are also quite a few that are available for free that parents can do. There are profiles that you can do just Google adult employment evaluation disability or something like that. There are lots of 'em that parents can do to start to have the conversation with their children about jobs that might work or training that they might wanna do or college experiences that they might want to have. When I talk about transition, I talk about five areas of life. So I talk about independent living, employment, transportation, health advocacy, and social-emotional health. And I think it's really important that you have good evaluation data on those things and that you're talking to your child and that you're thinking about those five areas of life. Now, I don't care if your child's three, you should start thinking about it now. I can totally overwhelm people with this conversation in the context of estate planning <laugh>, because

Marsh Naidoo (21:25):

I think this is amazing because honestly, we have to think about the consumer of care for our kids. It's not an option. It is a must. And this is what's going to ensure the success of their transition. Ashley and I just wanna give you the heads up. I'm actually in Tennessee and there is a state organization called the Tennessee Center for Supported decision making that has a tool on its website.

Ashley Barlow (21:58):

For a while that was the only tool Well you had the only law for supported decision-making. Last time I checked Tennessee still was the only one. But I'm fairly certain that a couple of others have gotten approved because a couple of others were pretty far through the committee. But Tennessee's supported decision-making, we're talking about options that are alternatives to guardianship. In case you aren't familiar with supported decision making Tennessee is a really good model, my son's 12 almost 12, and he's 11. And as I start thinking about his transition, I realize, for example, we are residents of Kentucky, and Kentucky's Medicaid waivers are really great. We got on a waiver when he was probably four or five. And so we're stuck in Kentucky. We are stuck as Kentucky residents. And our waiver right now says that you can't leave the state of Kentucky for more than two months at a time.

(22:56):

So what that means for our retirement is I look at Jack's independent living. I think that it probably matches our family's interests that we don't leave Jack for longer than three or four weeks, that we are close to him, whether he's living with us or he's living in a multi-family building that we buy with the money that we've invested for his future. I don't think that he'll live in a group home right now that doesn't seem to align with our family's interests and the resources that are available in our region. So can we become residents of Florida? Probably not. And so I'm thinking about those things because it's gonna take us years to figure out what that means for his employment, what that means for his healthcare. Another thing, my husband and I, my family has a house in Key West, and my husband and I love Key West.

(23:59):

But if we were to try to move to Key West, not only is it Florida, where right now there aren't great waiver benefits and there are super long waiting lists, but also his healthcare would be three hours away in Miami or Fort Lauderdale. That doesn't seem feasible right now. So we think about those things and that kind of helps us carve out our retirement plans and also the best plans for Jack. Another thing, I mean, and this is kind of unfortunate that we have to think about this right now, but where not only where are the resources good for our children, but how will our children be treated? There's one city where my older son has had tournaments, basketball tournaments, baseball tournaments, that kind of thing. And I could not believe the way that people looked at Jack in this one city where we used to travel a couple of times a year for tournaments.

(24:57):

And I was like, I'm not taking him there. Again, we don't need to go near people that look at him like that. He can go to lots of places where he is perfectly accepted and loved for who he is. And we don't need, I'm not gonna set up a booth and start advocating for Down syndrome at a baseball tournament. So I'm just not gonna go there and I'm certainly not gonna relocate there and I'm not gonna look for a job for him there. So this can spiral pretty quickly, but I think the secret is thinking about it now and thinking about those five areas of life. So yeah, I could go on and on about transition, I had a client really shed a lot of light on me on the social-emotional thing. So I'll say one more thing about this. My client wrote a future planning statement and she said she wanted her child to be interested in it.

(25:53):

Interesting. And she thought that was the key to social-emotional relationships with her grade school, middle school, and high school peers into adulthood. And this really struck a chord with me because we as special needs parents have a lot of perspective-shifting experiences. I always say that my BS radar is really honed because I don't have time for fluff nonsense. I know if I like something, if I don't like something, if I wanna dive into a relationship or I don't wanna dive into a relationship, if that's for me, it's for me. And if it's not, it's not the end of the story. And that's because I've had these experiences and I find that I don't crave relationships that are nonsensical, that are fluffy. I'm like 75 layers into the onion right away. And if you think about it as people age, everybody has experiences that make them deeper, beans that make them more critical, thinkers that make them more empathetic.

(27:00):

Your parents might get ill, you might bury your parents. People lose jobs, people experience divorce, and people have their own health crises. And all of these things make us more connected people. If we protect our children with disabilities such that they don't have those experiences that make them interesting, their friends aren't gonna wanna hang out with them. Yeah, sure, maybe they're refreshing to be around, but they aren't gonna wanna hang out with them because who wants to continue to talk about Disney movies when they're 25 years old? Now, if somebody has experienced hardship at work or if they are really involved in their own medical decision-making and they really they've got stuff to say and that helps them to just become more empathetic and interesting friends, their friends are going to want to continue to hang out with them. But I think about when we were in our twenties and we had friends that were experiencing breakups when they were engaged, really emotional stuff, or miscarriages or considering moving across the country for a promotion. Those were deep things. And I know that as we experienced deep things, people that weren't having those same experiences or similar experiences were kind of off my radar. Cause I was like, I don't hit much in common with them right now. So I think it's really important that we continue to challenge our children into adulthood so that their relationships stay meaningful.

Marsh Naidoo (28:37):

That's life 1 0 1 right there. We can't shelter, nor should we take away from the experiences that our kids could have and potentially have as young adults. They need to get into that part of life. They need to be able to make their own. So, Ashley, I can't thank you enough for your pulse wisdom and definitely would like to thank you for sharing your knowledge on your podcast again, which I find is invaluable too. And I know other parents would derive that benefit as well. And guys, this is just all pre-information and it's what you do with it and what you take from it, and how you implement it for your child moving forward. Are there any last words that you would like to leave us with Ashley, as well as your contact information?

Ashley Barlow (29:39):

Well, words of wisdom. You're part of a really wonderful community. So if you found this Raising Kellen podcast, if you get interested in rights law my stuff over at Ashley Barlow co, like company, ashleybarlowco.com you will find a community. And being a part of that community is very enriching and it does yield those deeper connections and relationships. So yeah, there's stress. Yeah, there's a lot of beauty and I'm here for all of it. So welcome to the community and I am happy to get to know you virtually. So yeah, you can find all of that stuff on my website and you can find the podcast wherever you listen to podcasts.

Marsh Naidoo (30:35):

Ashley, you have an amazing day and again, thank you for your hard work and I hope to see you soon. Thank you so much

Ashley Barlow (30:44):

Much. Thank you so much.

Marsh Naidoo (30:47):

As always, thank you for listening along on the Raising Kellan podcast. We sincerely appreciate your time and if you could kindly leave us a rate and a review on your podcast player, we would appreciate that as well. Well guys, until we see you all the next time, as always, remember, get to the top of your mountain. This is Marsh Naidoo signing off.