The Role of the Advocate in Special Education

Jeremiah Barrett  0:00  

Hi, I'm Jeremiah. And I'm Andrea. We are your hosts of Chats with two Dyslexics a podcast that aims to inform, entertain and empower.

Andrea Goodrich  0:10  

You are a curious person who could use a weekly dose of positivity, then you've come to the right place. 

Jeremiah Barrett  0:16  

HI my name is Jeremiah. And this is my cohost Andrea. Welcome to chats with two Dyslexics and I'm happy to bring our one of our first guests on the show and my mentor and my role model , Linda Gotleib, it's so good to see you and be able to like have you on because you helped me a lot. And I wouldn't be here doing this without you giving me the confidence. So I wanted to thank you. And thank you for coming. And I really appreciate it.

Linda Gotleib  0:41  

I'm honored to be here. It's my pleasure. Thank you for asking me. 

Andrea Goodrich  0:44  

I'd love to know how you two met. I'm super curious.

Jeremiah Barrett  0:48  

I remember bits and pieces of it. I remember meeting you. I think the first time was at your little office, I don't remember where the building name was. But it was like an office building. And I was waiting. And you were like doing some testing with me do some games, you had like a little basketball hoop and he had a little prize box which I was really into. And then you were like just talking with me. And then I do kind of realize some things about me. And you actually looked at my IEP and said, maybe this is not working for him or like, I don't sure if he has that. And just realizing like what I need kind of on the first day. I feel like it gave me a lot of homework.

Andrea Goodrich  1:26  

What's your perspective, Linda?

Linda Gotleib  1:27  

Yeah, what I was gonna say is I actually met your mom first before I met you, Jeremiah. Your mom called me because you were struggling so much in school. And I am a speech pathologist and also a child advocate. So she called me saying we need some help. And we talked for a little while she told me how much you were struggling at school and what a difficult time you were having. And you had already had some special education. And so I took a look at your records. And I said, Well, I really need to meet Jeremiah and you know, see how he's doing and get to know him a little bit before I could really tell you what kind of help I could give you. So I don't know how when I first met you your diagnosis was autism. And I after the first session, I said to your mom, this is not accurate. I started to work in the early 1970s. So I graduated with a master's degree in speech pathology in 1974. And I had a fellowship to work in a school in New York, that was for people that have very low IQs and also severely autistic. So that wound up actually being my love and specialty, I had a tremendous amount of experience with autism. And I can kind of spot it within the first 10-15 minutes. Now I'm down to probably three minutes. But as soon as I met you and got to talk with you and spend some time with you. I said no, I just absolutely don't think that this is accurate. And I think we should do some further testing and go into the school and have a discussion with them. So ultimately, when you came to see me initially it was really to evaluate and see what we thought your disability might be if in fact you had one and then to go into the school and talk to them about what your needs were and whether or not that school was really the appropriate place for you.

Andrea Goodrich  3:16  

How do you think a misdiagnosis like autism occurs? Like how did that happen?

Linda Gotleib  3:21  

Well, I think from what I gathered when Jeremiah was young, and he was in preschool and kindergarten, he had a lot of behavior issues. 

Andrea Goodrich  3:29  

What?! Jeremiah?!  Perfectly behaved Jeremiah!!! No.

Linda Gotleib  3:33  

And I also think when you're having learning issues, per se, that it's not uncommon to wind up having different kinds of ways of just acting out your frustration and so that really can be misinterpreted. My own daughter is dyslexic, and I noticed her difficulty when she was kindergarten I went into her classroom they used to have come you know, a day where the parent could come and watch what the kids are doing. And she was under the table under her desk more than she was sitting up dropping her pencil and asking to go to the nurse and I'm thinking this isn't right you know something's going on. And when I started to do things with her we were trying to read at home the only words that she could read were words that made sense if they were backwards so in other words, the word was she read is the word saw and bed was bead and that type of thing. So I said okay, you know, something's going on, but she also was pretty active and frustrated. And I think that Jeremiah was a very frustrated young child at the time. 

Andrea Goodrich  4:33  

Don't feel bad Jeremiah.  My son was kicked out of  Gymboree playgroup for biting kids at age 10 months.

Linda Gotleib  4:38  

So I don't remember any of that. But yeah, your mom will probably help with this piece. So I think that instead of like really doing a full diagnostic workup to figure out what this is, it was easier to just say, Well, you know, we're going to label him with autism and they did that I think a little too much during that time period. I think that's changing a lot now.

Andrea Goodrich  5:00  

I remember that as a teacher, from my perspective, as a special educator, I saw a lot of that too, I always thought it was so that students could have access to services, because without some type of label, they just fall through the cracks. So I not that they didn't have legitimate issues, but that people weren't trained, at least people like me weren't trained to understand what those issues could be.

Linda Gotleib  5:20  

Right. And I agree with that. And I think that, you know, I have worked with families, one in particular, where the family wasn't the family was just thinking that this is a learning disability. And I'm thinking, well, this is really on the autism spectrum, because it is a spectrum. And it's not just cut and dry. And it took a lot of convincing that this child needs a lot more support, and the school that he was in was not going to be it for him. And you know, now as he's gotten older, and they see all his behaviors, they realize that he has a lot of learning issues along with probably being on the autism spectrum. So, you know, for some students, it was easier to say we'll label them with autism, because we know that they're going to get the service. And I think that that's probably what happened with Jeremiah. But then it was a question of was he getting the right kind of service, which I think he was not. So we wound up Jeremiah having you change schools. Remember that part? Yeah I remember that? Do you want to talk about that a little bit? Do

Jeremiah Barrett  6:16  

you? Yeah, I think I believe I changed schools when I was in sixth grade. No, not like maybe in halfway, I spent like a year in like the winter and fall semester at my other school. And then when the new year came, I switched to like my private school. And there was like a big difference of me just feeling better, and be able to learn iand to be able to catch up.  Was that the school where I worked or a different school?

Andrea Goodrich  6:39  

or different school? No, oh, it's

Jeremiah Barrett  6:42  

the same school. Okay. I wasn't sure. When I met. Okay, then then that's when I met you afterwards. And I mean,

Linda Gotleib  6:48  

and that was somewhat of Yeah. And that was somewhat of a process because the Director of Special Education from your school district, and I visited several schools first to see which lace would have the best program for you. And then we decided, am I allowed to name the school?

Andrea Goodrich  7:02  

I don't know, quite honest. We've just been calling it a therapeutic day school. So

Linda Gotleib  7:07  

then we decided that this would be the best placement for you which it really was. But I think that at the time, not only, you know, did you need the right kind of service, but you really needed to get more confidence. And I see that as a major hurdle for so many of the students that have any kind of learning issue that, you know, they wind up having felt so downtrodden, because they were having such difficulties learning and have a real lack of confidence. And even my daughter, who's 41, who's dyslexic, and you know, very successful at what she does, and has a family and children is still not as confident as I'd like to see her. 

Andrea Goodrich  7:42  

 I'm the same way that breaks my heart, I'm going to be 55. And I always wondered why I have such low self esteem. And when I look back at my journals, and really reflect on my childhood, I really think it comes from that overwhelming sense of I'm not as smart as I'm not as good as why do i Why is this so hard for me?

Linda Gotleib  8:00  

Right. I went to observe my daughter in second grade, and she was on going around the classroom acting like a dog and barking, I was mortified. And I said to her, why are you doing that? And she said, Well, I thought that if the kids thought I was funny, they would like me. She was feeling that no one liked her because she couldn't do well in school.

Andrea Goodrich  8:19  

Oh, so that's heartbreaking. I'm so sorry. For both of you.

Linda Gotleib  8:23  

I think the most successful person I can talk about is probably my husband, who's dyslexic, but had no idea that he was. He struggled in school, and he was always like, at the front of the classroom. And the teachers were always like, pushing him to read more. And he's retired now, but was a very successful orthodontist. And he can say that he realizes when he reads words, he sometimes reads them and has to flip them around like speed limit would be limits speed and he's an avid reader now, but he reads very slowly. That's me. But having not realized that he was really dyslexic didn't affect his self esteem. 

Andrea Goodrich  8:56  

Wow, that's amazing.

Jeremiah Barrett  8:57  

Can you explain what a orthodoptic is to the listeners ?

Linda Gotleib  9:00  

An orthodontist word is someone that puts braces on your teeth and straightens them. So he was a dent, he had to have become a dentist first. And then he has a specialty where he does braces to straighten teeth.

Andrea Goodrich  9:11  

That's remarkable. What a great success story.

Linda Gotleib  9:14  

So you know, a lot of years of school, a lot of years of training, but more science than English and the reading piece. 

Andrea Goodrich  9:21  

I''m curious, could we go back to the part of the story where you were talking about visiting different schools? How did you know what schools to visit? Is that part of what an advocate does is they study all of the places available to families and then go on tours.

Linda Gotleib  9:35  

Yes. And there's also a website from the state of Connecticut that lists all the schools for special education. So you have to kind of filter through depending on what you're looking for and what you think would be the best option. Also, when we were looking for Jeremiah, the school district that he was coming from felt that whatever place we were going to pick that they were gonna agree to place him in had to be certified and there are schools that don't have the state certification. And so that sometimes becomes an issue with having districts accept it. And it's also a process of getting the school district in terms of advocacy to agree to the outplacement. Very often parents have to bring in attorneys to do that. I think for me, because I wasn't just an advocate. I'm also a speech language pathologist and I have enough background in language and disabilities that I was able to easily sell the districts on what the need was without having to call in the attorney.

Andrea Goodrich  10:34  

And how do you convince a district because I have a child? Well, an adult now who had some learning challenges, and I didn't have the money for an advocate or an attorney as a single mom. So how do you I lost my train of thought I wanted to ask you, how do you convince them that oh, here it is? How do you convince them that they can't meet the child's or students needs within their setting? Because they kept trying to tell me they could?

Linda Gotleib  10:58  

Yeah, and for me, I think because I also I worked in school systems. I mean, I've worked in hospitals, school systems, private centers, because I worked in a school system and I had to write IEPs. And I had to develop programs for students similar to Jeremiah, I was able to prove that the IEP, which is the individual education program, that the that guides the school system, and it's a legal document that what was in that IEP was not appropriate for him, and that they weren't able to provide with their staff the proper program, and it's not really that easy. And for me, there were times particularly you walk in, and you're the person in the room that they're not going to like instantly, they immediately get their backup. Oh, here's the advocate. Yep, this is. And one of the worst times for me was for one student, that it was clear that it just the school system, the public school was just not going to work at all. And this student was not learning and not making progress. And I literally brought a teacher to tears by breaking apart the program and saying how bad it was, and I felt terrible. You know, that's not what I want to do. I feel so badly for that person. But and I knew she tried her best. And she tried her hardest, but she didn't have the right training and the right tools to work with this.

Andrea Goodrich  12:16  

Exactly. And Jeremiah and I talked about that. Yeah, and you know, from a teacher's perspective, because I have a master's degree in Special Ed and I taught for 20 years, my hands were tied for several reasons. I asked for training in explicit instruction, and I was denied over and over. So I didn't have the tools that I needed to remediate somebody with a speech and language disorder or language processing something like dyslexia, something where you need the systematic, explicit cumulative, you know, individualized instruction, and I actually took a year off from my job and studied at the Children's dyslexia center, so that I could become confident and competent in remediating the challenges and I wasn't allowed to say that I was certified, I was made to take it off of my title. And I wasn't allowed to say the D word at meetings, I told Jeremiah saying the D word was like dropping an F bomb, you know, it just wasn't allowed, because then we would need to provide the services that cost money and training and time,

Linda Gotleib  13:12  

I was just gonna say that a lot of the game comes down to dollars and cents. And I guess, because I had the experience of working in school systems and knowing what they were telling me I could and could not say and could could not do. I knew the system. And I knew how to challenge that system. You know, I was now at the other end of the table, I have sat at the table as the parent with a child with a special need. I actually, when my daughter was in school, I bought an advocate. And the advocate wound up not saying a word, but just because I walked into the room with that person, I was able to get what I needed. So I knew the value of an advocate. And then I sat on the side of the table where I was on the team on the school side. And then I sat on the other side where I was now the advocate for the child.

Andrea Goodrich  13:58  

So you actually worked for school systems in the capacity of a speech and language pathologist at one point. Okay, I did. Wow. That's amazing. So can we ask? How did you decide to become an advocate for students? 

Linda Gotleib  14:11  

Well, it actually kind of fell into my lap. I wound up taking, I was working in the school system. And unfortunately, my sister was very ill. So I took time off from work to help take care of her. I'm sorry. She passed away, thank you. And then at that point, I decided I'm just taking some time off, I'm taking a year off, I'm not doing anything. And I wound up having two parents from the school district that I left call me and asked me if I was willing to just come in and do some private therapy. So I wound up doing private therapy and opening then eventually my own office and I had another parent of a child that I worked with in that district call me and say I really need help. I'd like you to come in and advocate for us and I had a good relationship with my director of Special Education. So I actually called her and said, because it was the same school district and I said, How do you feel about my coming in for the student because now I'm on the other side of the table. And because I think she realized the student"s need, she was willing to have me come in as his advocate.  Wow. We kept him in that school system. But we were able to get the right support staff for him to be able to stay within the school. So that's really you know, how it started. And then I don't know it mushroomed and my name started to get out there. And I probably did it too late in my career, because I became so busy that I was just jumping from one school to the next. Sometimes I was eating in my car on the way to another meeting. And it was just, it became exhausting. So I wish I had done it a lot sooner. And at this point, I have been trying to retire. Nobody will let you. I'm left with most of my students now have graduated. I have Jeremiah, who's graduated and graduating, and I have one student really left one family that just won't let me go yet. 

Andrea Goodrich  16:03  

Oh. I wouldn't let you go either.

Jeremiah Barrett  16:07  

Yes, we love you a lot. Thank you. I actually invited you to my graduation.

Linda Gotleib  16:12  

That was such a highlight for me, I can't begin to tell you I told everyone about it.  I have pictures of your graduation, I have a wait. I don't know if you can see it. Where I put it upstairs in my other room. The gifts that you gave me of the clock with the thank you. I have a family. I'll just so that you have some idea of how special this was. I have a family that I worked with for 11 years. And they were determined to move to Florida. And this year they were able to before the school year ended. And I found out that they moved on Facebook. And I found out that this student who I had been working with the family trying to help them find placements in Florida. Got into a program through Facebook. And that was my goodbye. So, you know, for you and your family to welcome me and make me feel so special and thanked was just amazing for me. Oh, and I love that. And I hope that we will always remain friends. And we'll always be in each other's lives.

Jeremiah Barrett  17:16  

Yes, I hope so too.

Andrea Goodrich  17:18  

Yeah, I feel the same way about you Jeremiah and your family. You guys are just such amazing people. It's very unusual for teachers to have relationships with students outside of school after graduation. And I'm just so thrilled. I think you and I are on the same journey, the same growth journey only I'm in the second phase of my life. And you're in the phase I wish I were in asking the questions that you ask. And I'm in the third phase (laughter). Although you seem pretty highly evolved. I'm not quite there yet. Not where I want to be. But I'm not where it was either. 

Jeremiah Barrett  17:56  

So what's your background? I don't I just Yeah, me? Well, I just can't Yes.

Andrea Goodrich  18:02  

Oh, oh, go ahead, Jeremiah. I always

Jeremiah Barrett  18:06  

Yeah, I just can't like explain how much like you twohave helped me like, especially Miss Linda because like, just I know, there's times I probably was like annoying I guess like didn't like what you were telling me to do. Like read these books and stuff repeat. Maybe you maybe get like a list like two pages sometimes of like a bunch of elders you know, I struggled with them. You were like "you need to practice this" and like, I'll be my mom forced me to be in the other room not with the TV in but like that really helped me a lot. And so like, just not being able to like, say like anything like non proper words. And then I was able to like thank you in my graduation speech and just be able to talk publicly. It's just I'm so sorry I missed it. I wouldn't be so No, it's okay. Like a piece.

Linda Gotleib  18:51  

Yeah, that was the other piece that I don't think we talked about that not only did I do the advocacy for you, but I'm also a speech pathologist. So you came to me for speech lessons. And that's the part that you're talking about. And we've worked a lot on phonemic awareness and phonemes and teaching you how to blend sounds and put them together properly to be able to read them and to be able to say them. So that's what you're referring to. And you did have these long lists of these nonsense words where you had to link all these sounds together, even though it didn't make sense. So that when you were starting to read words like that they would make sense

Unknown Speaker  19:32  

Ugh! I hate nonsense words. Ugh!

Linda Gotleib  19:35  

yeah, and and it's from your perseverance and your hard work that you are where you are today. So I congratulate you because you have really worked hard.

Jeremiah Barrett  19:46  

Thank you. Like, just I'm really happy.

Andrea Goodrich  19:49  

I wanted to say something about our listeners. Yeah. So for our listeners out there who know that there's something wrong with their child something that they're struggling With what if they're like I was a single parent, you know, working two jobs with three kids and know there's something wrong. How can they get services? Do insurance cover advocates or speech and language therapy? Or is that something you volunteered? You know, out of the commitment in your heart?

Linda Gotleib  20:17  

Well, I was a paid advocate. But there are certainly associations where you can get advocates, I think that you have to be careful, though, because I know that there are a lot where I took a course just to make sure that I knew exactly what I was doing, and that I knew enough about the laws, aside from what I knew from a school system that laws, advocate. But I think that there are a lot of advocates out there that are just parents who have had experiences with their own children. And I don't know that when they go into a school system, they're as convincing. So you really need to look for someone with the right kind of background, what I've always said, I felt for myself, for my own children, and for other people that are spoken to, you know, to start with a school system first and ask for an evaluation. The worst that can happen is they're going to tell you that nothing is wrong.

Andrea Goodrich  21:12  

And should they ask in writing, so that it's memorialized?

Linda Gotleib  21:15  

Oh, absolutely. And my parents had, parents have a lot of rights, which the districts don't always inform them of. So you know, that's kind of the sad part that I see. You know, and by public law, it's free. So you are entitled, starting, actually, before from birth, there's Birth to Three, which can provide services and advocacy for child. And that's through your state health department. And then after that, as of age three, it's the public school system. So if you have a three year old and you have questions, you can call that local school, that your child would be going to and request an evaluation. And they are required by law to do an evaluation. And they are required, then if they find anything in terms of problems, to provide service. At no at no expense.

Andrea Goodrich  22:11  

I think it's worth repeating, because I'm not sure I understood all of what you said. And for our listeners that might not have the training that we do. Did you say that from birth to three, there are rights that parents are entitled to that are free, including advocacy or advocacy is separate?

Linda Gotleib  22:30  

Well, I would think that I think advocacy is probably separate. Okay, I think that there are so many parents that don't even know that there's a Birth to Three program. And there's a place for them to go to try to get answers. I think advocacy might come into play, when the parent is convinced that there's a problem. And maybe Birth to Three is saying, well, they don't qualify, but you can always and I've told parents this as well. You know, if you have an evaluation, and they're saying your child doesn't qualify, you can ask for a second evaluation, you can ask for another evaluator another opinion?

Andrea Goodrich  23:11  

So do you have to disagree with the results of the school's findings out of PPT before you can have access to that second evaluation at their expense? Yes. Okay. So those are three steps that maybe we could put in our show notes, you know, so that people that listen to this podcast and want more information can maybe go and maybe after our session, Linda, we can find out the state website, what did you call it, the Public Health Department,

Linda Gotleib  23:37  

I can try to look up exactly what it is, okay. But I think that, you know, unfortunately, too many people and it's a federal program, you know, my daughter asked me to go with her across the street to a neighbor's house. She said, there's a little boy who's three,  just turned three not talking at all. And so she was concerned. And I walked in and, you know, right away, I said, Okay, this child really needs services. And I am sure he's on the autism spectrum. And what I did was just tell the parent all about what option they have through the school system.

Andrea Goodrich  24:11  

was this their firstborn, so they had no frame of reference to know how many words the child should be speaking,

Linda Gotleib  24:16  

you know, actually, it's their third child. And I know that they were a little bit in denial, you know, he's not toilet trained. He's staring at particles in the air. You know, he's very bright, because he's drawing amazing pictures. Totally nonverbal and doesn't sit still for a minute and doesn't communicate other than pulling your arm to go get something. Wow. So Right. And, you know, that's three already. So that child really needs help. And the parents were not aware that at three, they could get any kind of help from their local school system.

Andrea Goodrich  24:52  

Geez, where's the missing link? I mean, shouldn't pediatricians be pointing parents to these resources?

Linda Gotleib  24:58  

I think so. And You know, I think pediatricians are getting better. I have, I had a couple of friends who are pediatricians and I used to have long talks with them about, you know, it used to be kind of the rule of thumb was in terms of, they would evaluate and say 10 Words by two. So if a child has at least 10 words by two, they're doing okay. But realistically, 10 words doesn't give you a lot of communication. So you know, I, it, I think it takes a lot of re educating some of the pediatricians in terms of what the standards should be at this point, and how quickly you should suggest to a parent, that they look for an evaluation, and they should have those resources to hand to a parent. 

Andrea Goodrich  25:46  

Oh, you know, my other question is, too, like, I've worked in districts where there are a lot of families whose parents English is not their first language. And sometimes they're busy, both parents working two jobs. And I know that they are given their rights at PPT meetings. And I don't know if it's given to them in their native language, I think that's possibly one barrier. But the second barrier, I have a good friend, she's too afraid and embarrassed to ask what all the jargon means in those handouts, you know, and so I sat down and explain them to her, and even then it was so hard. And I forget what I didn't know, before all these years of experience.

Linda Gotleib  26:28  

I think that's a really good question. Because when you're at one of these planning and placement team meetings  PPT at the school, and they hand you your parent rights, they do a quick little blurb that you're entitled to these rights. And here they are, and they're handing you a pamphlet, it's not one little page, it's several pages, your rights are, you know, all written there. As a parent, you don't sit there and read through those rights at that point. And I would say that 95% of the parents don't sit down and read them at all.

Andrea Goodrich  26:58  

Yeah, and now my friend got it from an email. So a lot of people don't have access as a single parent, I couldn't afford internet, you know, so they don't even have access to read these at home, or a printer. Ink cartridges are expensive. So what is a parent to do? 

Linda Gotleib  27:14  

Well, they're (the districts) required by law to actually give it to you. So you know, if they're saying they're sending it by email, and you can't get email, then you say, you have to mail it to me, or you have to hand it, they're really supposed to be physically handing it to you at a meeting. Okay, so they may be and at every meeting, they're supposed to say, you know, do you need a copy of this? Okay. But unfortunately, it's complicated, even what you're reading in terms of your rights. And so I think that most parents aren't reading through that and understanding what their rights are. And they're trusting the school system. And in most cases, you know, why wouldn't you trust the school system, these are the teachers, these are the ones that are telling you that this is what your child needs, and a parent doesn't have that background or understanding that you as a teacher may have your hands tied. And you may not be able to say certain things because your director is telling you that you can't do this. I just never played into that. I didn't care. There was just no way that I was going to back it up if I didn't think it was what that student needed. We once had a child come in with what's called a cochlear implant. He was deaf at birth, and they implant something into your brain and into your head. And now he could hear and he was going for very specific special lessons in terms of Speech and Hearing and being able to process language, and we were evaluating him for our preschool program. And I was literally in tears, I had never heard a deaf child sound so wonderful. And the program that this child had was phenomenal. And our director of Special Ed did not want to continue to spend the money on the program. So she was denying that program for the student and wanted the student to come into our school, to our program. And for me to provide that same kind of service. And I didn't have that same kind of training. And I didn't feel that our program was appropriate. And I just, that's just who I am. I went to bat. I didn't know this family at all. They absolutely said that they weren't going to accept the services they were going to bring an attorney in. And I finally sat down and convinced the director of special education, don't spend the money on the attorney. You're not going to win. We're not really equipped. And what's going to happen is two three years down the road when this student is not doing as well as he should have been doing. It's going to come back to haunt you let him have the program that he's in now and she finally agreed, but it's a battle and parents don't understand What's happening in the background.

Andrea Goodrich  30:02  

Yeah, you know, and I explained to Jeremiah, in one of our conversations that, you know, in my town that I live in, taxpayers are very often arguing about how much money is allocated for school systems. You know, the whole way our society is structured that you know, real estate taxes are the thing that funds districts. I think we're number one already set up for failure. But number two, there are people like my dad, who's a very kind and loving Christian, who doesn't believe it's taxpayer dollars that should be supporting students with special needs, you know, like I work with medically fragile students who had extraordinary expenses, most of which were covered. Well, I shouldn't say that, because I don't know many of which were covered by their family's insurance, but it costs the districts a lot of money to provide the necessary services. So where is that money supposed to come from? I mean, shouldn't we be pointing fingers at the big insurance companies that maybe should be getting on board to help these families as well? I don't know.

Linda Gotleib  31:00  

Well, most of the money comes from the state. And so it's, you know, the schools have quotas, and, okay, are not supposed to have more than a certain number of special ed cases. So they try to limit those numbers. And it all depends on how much funding the state is willing to give the school districts. 

Andrea Goodrich  31:22  

Oh. so, I'm not speaking correctly, then the real estate taxes are for general ed and the state funds special ed?

Linda Gotleib  31:29  

there's a lot of state funding that comes for special ed.

Andrea Goodrich  31:32  

Wow, okay, no, no, me neither. And there's a quota. Okay, so that makes a lot more sense to me now, through that lens,

Linda Gotleib  31:40  

you know, they're saying, Okay, we don't want you to have more than x amount of students on the autism spectrum. And then they try to convince parents sometimes that oh, they don't qualify anymore. Hmm, I've seen that as well. So that's why at meetings, they'll go through a list and decide. And every three years when you have what's considered a reevaluation, they come out with this whole checklist. And you have to go through that list and decide whether or not you're still eligible for those special services.

Andrea Goodrich  32:14  

Wow, it's so complex. It really is. 

Linda Gotleib  32:17  

Yes. A lot of challenges, you know, Jeremiah was in a special school setting, it's making sure that the district that is paying for that special setting, is going to keep agreeing to have the student stay there. So Jeremiah was fortunate because he started in sixth grade. So he went middle school, high school. But oftentimes, if a student starts, say, in elementary school, the district may say, Well, we have a good program now in the middle school, and we want to bring him back to our district and not keep him in that special setting. And then it's having to convince and, and a lot of it sometimes comes down to a parent's relationship with the special ed director, or the money that the district is going to have and how many students they have in these other placements and whether or not they can afford to keep the student there. But in many cases, they're going to try to convince parents to bring them back to their home schools, to the public school.

Andrea Goodrich  33:21  

So parents need to be aware of that, because that is something that will be coming. So that might be a good time for parent to look for an advocate before that three year time where the student needs to be reevaluated.

Linda Gotleib  33:33  

Definitely, or just keep reiterating how wonderful and the program is that the student is in and thanking the director for the help they are giving them. I know in Jeremiah's case, I think, Jeremiah, if you remember, you had a really nice relationship with your director of special education. Do you remember? I can't say her name or who she is, but she always came in with those interesting shoes on that we would always talk about. I think that she really cared about you as a person. And you know, if you can develop that kind of a relationship with a director, and, you know, they feel like, I think she felt very  rewarded. I think that she realized that she took the student that was struggling so much, and she helped him in the right way. So if you can develop a relationship with that director, it really helps to make a difference so that a student can stay where they are.

Andrea Goodrich  34:33  

You know, one of the things I struggle with you had asked me earlier a little bit about my background, because I felt so passionate about wanting to have the tools to teach students with dyslexia, how to read, especially because of my struggles as a child, and I never had a diagnosis. But I'm fairly certain that I still struggle with dyslexia, and ADHD, which oftentimes go hand in hand. Yeah, but One of the struggles that I ran into was the training is so intense, and I was able to go to the Children's Dyslexia Center in Waterbury, I took a year off, because it's very intense, you know, the trainings were every Saturday, I'm sorry, one Saturday, a month, all day. And then we had over 60 hours of supervised clinical practice, one on one. And that's really what it takes to start to become comfortable enough to bring back those skills to a district and teach. But most schools don't allow teachers to provide one on one intervention services for students, they're expected to do it in small groups, you know, because there are only so many hours in the day. And that doesn't work. Every person with dyslexia is different. And it's not a one size fits all, you know, intervention program, I write different lesson plans for every single student, because by the time the students are identified, they're already in usually fifth grade, by the time they're getting the services they need if they get the services they need. But I wanted to just throw it out there for parents that not only does the Dyslexia Center offer training for teachers like myself for free, if they, you know, off provide the clinical services, they offer students, families, three years of intervention, for a student with dyslexia for free for three years, the difficulty is access, the parents are required to bring the student to the center, wait there. So if they have other children, that's a hardship. All of the services are after school hours. And at the time I trained there in 2011, they only had one center, we now have a satellite in Bridgeport and a satellite in Hartford course with COVID. You know, we're doing things. We were doing things remotely, now we're back at the centers. But that's something we can put in our show notes for families, the waiting lists are very long. 

Linda Gotleib  36:51  

That's what I  was going to say, because we looked into that for Jeremiah. And at that time, I think it was like a three year wait list.

Andrea Goodrich  36:57  

 yeah. Oh, yeah. Yeah, that's no exaggeration. And it's

Linda Gotleib  37:00  

unfortunate that there aren't more programs like that. And what you're referring to in terms of, you know, in a school setting, it all comes down to dollars and cents, because they  are only going to hire X number of teachers. And that's why you have these groups instead of individual. And it's the squeaky wheel that gets what it needs. So if a parent sits back, and they just accept whatever they're saying, and like, okay, that's what they're gonna get. But if a parent is very squeaky, and they shouldn't be afraid to be. I mean, I worked part time in a school. So I was only there three days, it was a parent that insisted on their student getting five days a week, I wasn't there five days. So I actually saw the student twice a day, but that was the squeaky wheel.

Andrea Goodrich  37:46  

Yeah, and that's, that's what the research shows, yeah, the students need either four thirty-minute sessions, or two one-hour without fail. And you know, with school schedules, they always have assemblies and meetings and transition activities and field trips, and, and so there's no way that's going to happen, it just doesn't happen. And so these students in a school setting it realistically, there's just no possible way to give them the frequency that is required, you know, based on the research. So it's hard for people like me to make a living, you know, I took a year off without income, and I have to charge a lot of money as somebody providing tutoring, I charge over $90 for one session that includes my travel time, my planning time, it takes almost 35 minutes to write each lesson, and then the remediation and the materials that I have to make and purchase. There's time involved in that. So an insurance doesn't cover it for a family. So the wealthy people are the ones that are able to afford tutoring. Correct. And so and I think reading should be a fundamental right, just like clean water and clean air. So there's a problem. And I really wish this could be covered under insurance for families.

Linda Gotleib  38:56  

I agree. And, you know, in Jeremiah's case, you know, it's not as though it was that easy for his parents to afford my services. So I had increased my fees, but I could never increase them for his family. I knew that it was difficult for them. And as much as I charge hourly, I was pretty generous with my hours because I felt that was the best way I could give back a little bit to them. Thank you.

Andrea Goodrich  39:26  

Yeah, it's it's hard. You know, and I know there are some African that's like sliding scales out there. And I don't know how you can. I mean, what should we tell parents that are listening? That, you know, are their advocates that have sliding scales? I know there were when my child was younger, but

Linda Gotleib  39:47  

yeah, I'm sure that there are I as I said, I think that the most important thing is to find someone that has the right kind of background that you need because you can spend a lot of money and not get  very far, if that person isn't going to be the right person that can come in and do it and get the job done quickly and appropriately for you,

Andrea Goodrich  40:10  

the right advocate, you mean, is that what you're okay? So parents would need to have a list of questions to make sure that the area that their child is struggling in that that advocate understands that and what the proper services would look like, as well as the laws. Yes,

Linda Gotleib  40:25  

because, you know, having sat at both ends of the table, I mean, I have been at a meeting where somebody came in with an advocate, and it was just, you know, one time it was a friend who thought they knew what the disability was, and, you know, the district could talk circles around them, and they didn't get anywhere. And, you know, I think in that case, I don't know if the parent paid for the advocate or not, you know, we never had that kind of information. But it was kind of a waste of time with the advocate because they weren't getting with the parent or the child with the child needed at that point. They could basically justify, and they didn't know how to really challenge the justifications.

Andrea Goodrich  41:09  

You mentioned earlier that there was a course that you took, is that course still available to people to take? You

Linda Gotleib  41:15  

know, I don't know, if I took it through the Autism Spectrum Resource Center, I believe at the time it was  being offered for free.

Andrea Goodrich  41:26  

Is that center still in existence?

Linda Gotleib  41:29  

Yes, it is. It's in Wallingford. And there's a program called Wrights Law, they published a couple of books, and they give courses there, those are not free. But they give courses I took it in person, but you probably at this point, they have them online. And you know, they have books that they published that go along with it. And that's a good way of really learning all the laws and how to write appropriate letters to backup your information. So I found that very helpful. Okay, so that's

Andrea Goodrich  42:02  

great. That might be something parents could access.

Jeremiah Barrett  42:05  

I was wondering, What if someone's like listening? And one says I want to be a parent advocate. What? How? What advice would you give them if they want to get started in this field? Any myths you want to bust or like things that like you think are gonna happen that things don't work out? Was that too fast? 

Linda Gotleib  42:26  

To to someone starting out as an advocate? Yeah. Is that what you were asking?

Jeremiah Barrett  42:31  

Yeah, or someone who wants to like start?

Linda Gotleib  42:33  

Well, I think for starters, you have to have a hardshell. Because, as I said before, and I have to admit, as confident as I could come across, when there were times I walked into a room, and I was really nervous. I mean, you're walking in, there could be 15-20 people sitting at that table, and they, they don't like you from the minute you set foot there, because they know that you're going to challenge them. So I think that you have to have a certain amount of confidence in what you're doing to get started, I think you need to feel strong enough that you can speak up, even though they're going to try to shoot you down as the advocate, they're going to try to disprove what you're saying, because they don't want to have to spend the money. And they don't want to have to give the extra time with the extra services because their teachers may not have enough room in their caseload to do that. So I think you have to have the knowledge, I think you have to have thick skin, I think that you have to be a good speaker to do it. So that and you also have to be good listener, because they're not going to like it if you come in like a bulldog. And I was once in a meeting where we had an attorney there and the attorney was yelling and screaming. Yikes. That doesn't go over well, that doesn't work. So you have to be able to kind of remain calm and talk in a, you know, calm voice and not get upset about things. Which is why as a parent at sitting at the table for my daughter, I brought someone with me because I would become emotional about things. And as an advocate, I knew I couldn't do that. That wasn't something that was going to work.

Andrea Goodrich  44:12  

Yeah I always cried.

Linda Gotleib  44:15  

There were times I felt  like crying, but I can't do it.

Andrea Goodrich  44:18  

I always cried at my child's meeting. Right.

Linda Gotleib  44:21  

There's it we always put a tissue box on the table.

Andrea Goodrich  44:25  

Yeah, yeah, it's like just very painful to talk about things.

Linda Gotleib  44:28  

But, you know, for for parents. The one thing I can say, and I did use it one time when I was at a meeting, and I really wasn't happy with what they were offering me. And I just turned around and I said, I'm ending the meeting now. And I'm going to call my attorney. I didn't have an attorney. And that's all I had to say. And they said, let's take a break and come back in about five minutes. So of course in that time period, they all sat and they talked about okay, what are we going to do and what are we going to offer and by the time I came back in I had what I was asking for. So very often, just by the suggestion of I'm going to bring in an attorney, you may be able to get what you're looking for.

 Wow, I like that. So parents have the power. If I understood you correctly to 1) end the meeting and reconvene another time 2) they can mention that they will be consulting with their attorney. And sometimes just asking to take a break in the meeting, just to pause and step away for a few minutes might be enough to come back and you know, release some of that emotion and pain and come back with with a calm, because it is very difficult, you have a very calm way about you. It's very relaxing, I feel very safe in your presence.

Thank you. But the other thing, I think, to mention along with that in terms of requesting, and you know, we're saying that the parents going to come with them to attorney, if a parent comes with an attorney to a meeting, the district has to be there with their own attorney. So that cost them money. And the minute they know that it's already going to cost them money is when they become more cautious. They cannot. You cannot, as a parent come to a school and bring an attorney with you without the school district coming with their own attorney. Their attorney must be there.

Andrea Goodrich  46:15  

Okay, interesting. I never knew that. Yeah, I never knew that. And then do parents have the right to tape record the meeting? Because it's hard to take all of that jargon in?

Linda Gotleib  46:25  

Absolutely. They can always request tape recording, but they need to inform the district that they're going to tape record the meeting, because the district also then has the right to have their own copy, and they will record the meeting at the same time.

Andrea Goodrich  46:39  

Okay, so the parent doesn't have to provide a duplicate recording, the district would just record that on their own. 

Linda Gotleib  46:45  

Each person usually comes in with their own recorder. Okay. Okay. Good questions. Yeah, I'm just trying to

Andrea Goodrich  46:53  

remind our listeners Yeah, like what who might our listeners be? Because we honestly don't know who our target audience is. You know, we're thinking with the word dyslexia that we might have people from, you know, dyslexia support groups, join us to find out what we're all about. So keeping our listeners in mind, you know, what might they be able to take away? What tools are we offering them, you know, from your expertise and your experience that might be of service to them? Because really, that's kind of what our podcast is about to build a community to be of service to people. I think

Linda Gotleib  47:25  

with the title dyslexia, I think, what's difficult in in those terms, and I think, you know, and you've seen it yourself, is that it very often that diagnosis, that word dyslexia is not used. And so the, the ability for the parents to get the correct kind of services is much harder, because it's not termed as dyslexic or dyslexia. You know, they'll use auditory processing disorder, reading difficulty, you know, so many students, and now there are a lot of programs in the school like the Wilson program or Orton- Gillingham that districts will offer but they're not necessarily using the word dyslexia. So I think that along with that word, you might want to, you know, use some other terms or, you know, teasers, you know, have you had difficulty learning how to read, are you a slow reader? Do you  reverse words, when you're reading them? Do you think you see things backwards, you know, some little teasers to help get the kind of audience that you're looking for.

Andrea Goodrich  48:29  

It's interesting that you say that about the terminology. I was not allowed as a teacher to use that terminology, Orton Gillingham approach, which to me is a tragedy, because it is the scientifically, you know, based approach for remediation. I mean, there are studies long longitudinal studies from Sally Shaywitz, at Yale showing that you know, when functional MRIs are done, after years of remediation using multi sensory approach that new neural pathways are formed. I mean, we have science behind this, and yet, I wasn't allowed to use those words. In fact, we're not allowed as teachers to even name a program. We're not allowed to say Wilson, which falls under the umbrella of the Orton Gillingham approach, unfortunately, and unfortunately, I think sometimes well intentioned administrators might not know what type of boxed programs like Fundations, which is, you know, also by Wilson, how they really work. You know, unless you've actually sat through these lessons, you don't really understand the research behind them and how they might work

Linda Gotleib  49:31  

well, and the other thing is the law or if you think about the IEP, the individual education program, it doesn't have to list the specific reading programs. So it you know, it'll talk about what you need to learn, but it won't talk about a program. So a way to get around that is to really understand how the IEP has to read for a specific program like a Wilson or Orton Gillingham. And if you can get enough knowledge about exactly how that IEP has to read, you can then assure that you're going to get the right kind of program. And you know, when I would go into districts if this, if a student needed something like that, you know, I just point blank say, Do you have someone Orton Gillingham trained? Do you have someone Wilson trained? We are looking for this kind of program, the student needs it because XY and Z.

Andrea Goodrich  50:23  

And did you ever get an answer yes? 

Linda Gotleib  50:25  

Well, yes, because Jeremiah had that kind of program. It wasn't something they could do in his local district, which is one of the reasons why he was able to get a special program at a special school.

Andrea Goodrich  50:38  

So what do you do as a parent, like when sometimes districts say, yes, they are certified, we do have teachers, but they're really not, they only have a two day workshop like I had, they have no true Wilson certification, which would take I believe longer than a year, they have to actually come out to your district and observe you teaching lessons. So I've never met anyone, they are out there. But I've never met anyone that's truly Wilson certified. And yet, these parents are believing that their students are being taught by a certified Wilson train teacher,

Linda Gotleib  51:10  

you know, it's hard because you in most cases have trust in the school system. I think that as a parent, you have to make sure your child is really making progress, and you have to stay on top of it. And you have to ask for homework, you have to make sure that they're giving you something to follow through on at home, because otherwise, you know, they may not even be doing it every day in school. For most cases, they'll say, okay, maybe three times a week. So you really have to stay on top of it and make sure that you feel that your child is making adequate progress.

Andrea Goodrich  51:42  

And that's a really good point, it's a really good point. Because as a parent, I didn't even know what adequate progress looked like until I went through the training at the Children's Dyslexia Center. So parents do have the ability to go through their training for free, so that they can know exactly what the teaching should look like, and what what realistic, measurable goals and objectives should look like. Or that sorry, go ahead.

Linda Gotleib  52:06  

Now, the other thing is on your IEP, the individual education program, there are goals and objectives, and you have to make sure that they are then giving you feedback for it. So in most cases, you can ask for a percentage of progress, and but you have to stay on top of it. Because that doesn't mean that the teacher is going to hand that to you, right? Usually, depending on the district will get an update either three times a year or four times a year. But as a parent, you're entitled to ask for meetings on a much more regular basis, you can ask for it every two weeks, you could ask for it every week, you could ask for it once a month. And you can sit down and say I want to see what kind of progress my child is making. But as a parent, also, if you're spending time having your child work with working with your child and reading with them, you're going to get an idea of whether or not they're making progress. And if you don't see that happening, then you have to step in.

Andrea Goodrich  53:00  

Right. I also wonder what the parents have to have that written into the IEP that they would like, perhaps monthly check ins? And do they have the right to ask for raw data? Because a lot of us as teachers, one of my challenges was trying to collect data like I would say, Well, I don't know exactly, what exactly am I going to be measuring? Am I going to have a certain amount of phonemes that I would like the student to be able to master every 12 weeks? And then how do I collect data on that? Would I have a paraprofessional sit there with a checklist? What I have a checklist? And how am I supposed to do this when I have a group of four other students? And you know, from a teacher's perspective, I have a tremendous amount of empathy for how difficult it is to do this, you know, we want to do right by the student and their families. But the reality is the way our schools are set up is it's very difficult.

Linda Gotleib  53:50  

I agree. Yeah, I agree. I literally used to sit there with my checklists. And even if I had a group, this one check, check, check. And I guess I was taught to be very organized and very statistically relevant. And so when I went to a meeting, even if it was safe, we're telling them whether or not a child could pronounce his R's correctly. I could say that at the beginning of the word, he could do it 60% of the time. And at the next meeting, if I went in and I said 75 or 80. But if not, I know as a teacher, that that students not making the progress. And there's ways of really holding the teacher accountable. It's yeah, it isn't easy a teacher to have to be accountable. I and I know that part as well, but there are definitely ways to hold them accountable.

Andrea Goodrich  54:40  

Yeah, that sounds like something teachers could benefit from, you know, a crash course and easy ways to quickly collect data during sessions, you know, so that it is meaningful to guide instruction, as well as for the families, which is what is nice about some of those boxed programs like Wilson reading systems, which fall Under the Orton Gillingham approach. What I've noticed is districts don't have teachers that are Orton Gillingham certified, they might have gone to a, you know, a week long workshop, but they haven't No, yeah, but no, so they have the theory, but no practice with the clinical, you know, actually administering it. And let's face it, we that's what we need. We need repetition, to be able to understand how to use the methodology. And then you need to have data collection sheets, which, you know, the Children's Dyslexia Center has their own sheets, but they're copyrighted, they created them. And so teachers need to learn how to set up a data collection system that makes sense. And then, like you said, write an IEP goal with objectives that are measurable, that align with the structure, and the scope and the sequence of the Orton Gillingham approach. So that I think that's a missing gap that's out there. I agree.

Jeremiah Barrett  55:50  

Well, thank you, Linda, for coming on this podcast and being our first guest. And I'm really excited to hopefully come have you come back again, and talk about more about your stories. And thank you for listeners for listening to us, and come back and listen, we'll have other episodes, and we're really excited. So thank you.

Andrea Goodrich  56:09  

Yeah, we've got quite a nice lineup. Thanks to Jeremiah with your interviewing searches.

Jeremiah Barrett  56:14  

Thank you for listening, and make sure to follow us on Instagram and YouTube.

Andrea Goodrich  56:18  

Now before you go, listeners, you can follow us right now, in the app you're using to listen to this episode, you can support us on Patreon. And for a recap of today's episode, you can view the complete show notes at www.chatswith2dyslexics.com. Don't forget to use the number two. We'll see you next time listeners

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