Afraid to Ask, Ashamed to Fight: Breaking the Silence on Special Education

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Okay, welcome to Common Sense Parenting with Pam.
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I'm so excited because today I have a guest who was on maybe was it a month ago, nancy, I think so.
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I think so, okay, nancy Perkins is a special needs advocate and just so knowledgeable and so skilled in what she does, and we're excited because she wrote an ebook that I think every parent who has to deal with the school systems and IEPs and all that good stuff and advocating for the children need to grab a copy of, because we know I have personal experience, as you do we know how challenging that can be sometimes.
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So, nancy, why don't you start off by telling us the title of the book and what it means?
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So the title of the book is Afraid to Ask, ashamed to Fight, and I was playing around with different titles and I came up with that one because afraid to ask.
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It can have, I believe, multiple meanings.
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You can be afraid to ask because, deep in your heart, you know that something is going on and you just it's too painful to face.
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It can also be that you're afraid that you're going to be that districts will gaslight you, which is a very genuine fear.
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And gaslighting takes the form of my least favorite sentence in the English language wait and see, which does absolutely nothing.
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It's wait and see for the child to fail, ashamed to fight District administrators.
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There are some very good ones, very helpful ones, and there are others who are just, they're just bullies.
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There is no, there is no other way to put it.
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They are guarding the purse strings as if it's their own bank account and their own money, and they are, granted, they're under pressure not to spend.
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So I have to say that.
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But they can.
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They get very, some of them get very forceful and very possessive about oh well, we have to.
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You know, we can't spend the money, we can't spend the money.
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They also put pressure on their staff on the teachers general ed and special ed not to tell the parents anything so that you can go to a parent can go to her child's teacher and say, oh, do you think my child is having trouble with reading?
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And the teacher might just go into the wait and see she'll catch up.
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Blah, blah, blah, that kind of thing.
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He is stuck in between a rock and a hard place that they have to obey their supervisors because their job would be at risk otherwise.
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But I so that's the meaning of the title of the book, and I have been reading about the teachers who are leaving the field, and one reason that that this is general ed and special ed is that they don't get support, and you know, having to lie to parents is a huge lack of support.
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So that's what led me to write the book, and also because many parents cannot afford to hire a special education advocate.
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They can't afford to hire them privately, and so the book is a less expensive option.
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Well, you know what I think is brilliant about the title, though, nancy, you explained some of the reasonings, but I know from experience and working with other parents who have had children with different abilities and had to go talk to the school system.
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A lot of times they're afraid to ask because they don't know what to ask, or they're afraid they're going to look stupid or uneducated, or maybe they're not very educated to begin with, and then they feel like people are going to look down on them if they ask those questions or if they challenge anything, and so they just sit and listen to what's being told to them instead of asking those important questions and stepping up to advocate for the child.
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And then, you're right, school systems will try to buck having to pay for it, and I think I shared that with you.
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An experience that my sister had when she was a teacher and the administrator said don't tell the parent this.
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That they they're entitled to this benefit that we have to pay for.
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Don't tell the parent.
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Well, of course my sister told the parent later, because she's like I have a child with special needs.
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Why would I not tell a parent what their child is entitled to?
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Like?
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That was bizarre to her.
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So, no, we're not painting all of the schools and all the teachers and administrators this way.
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However, that is a reality.
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That's a reality, and so parents need to be aware of that and they need to know how they can step up and that they have the right to ask those questions, correct?
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Absolutely yeah.
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Yeah, and that's why you wrote that book to let them know that.
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And that's why you wrote that book to let them know that, yeah, yeah, and also they, they don't, honestly, they don't have to hire an advocate.
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I mean they, they, you know there might be certain I'm sorry I didn't myself, I was busy playing super woman and and so for me that was a bad idea not to hire an advocate.
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But they might, they, they might read the book and think you know what.
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I think I'll try to do this myself, because I give them the book is not, it's not a sales pitch at all, not at all.
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And in fact I list free resources and I tell them go online.
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And I also tell them there's something called a procedural safeguards notice from.
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It's a state guide from ages three through 21.
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And that procedural safeguards notice, pam, is a goldmine.
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It's like to me it's the equivalent of getting a pair of diamond earrings.
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Wow, it really is that you look through it and it will explain to you what your rights are.
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It is not.
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Is it user-friendly?
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Well, I wouldn't call it that.
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You have to sit with it.
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It's not like reading a fun novel, it's not beach reading.
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You have to sit with it and sit with your highlighter, sit with your little post-it notes and underline it, and if you're one of my colleagues had said this if your procedural safeguards notice looks tattered and worn like the dog, ate part of it, that you have made very good use of it.
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If it looks pristine, no, that no, you got to get in there.
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So I think, well, nancy, what's going to happen is people are going to read this book, right, and they're going to go yeah, I think I can do this myself or they're going to quickly go.
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Oh, holy cow, I need to hire an advocate right away because I cannot handle, I can't, and you know, for many reasons, right, but it's a lot.
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People don't understand all the nuances and all the policies and procedures and things that are involved, and it's.
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It's not just this cut and dried, simple process.
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And unless you know what you're supposed to be doing and what rights you have and that your child has, sometimes you just get steamrolled, Right, oh yeah, because they think, well, she doesn't know what she's talking about, we're not going to tell her and then everything's good.
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So there are some cases where maybe a parent could handle it, maybe they do educate themselves, they read that procedure thing and they know what their rights are, but other times they're going to go like, whoa, where's Nancy?
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You know, and the beauty of it is that, for people who heard our last podcast, you can work from, zoom all over the country.
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Yeah, so you don't have to physically be present somewhere.
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That, with the background that you have and the skills and knowledge.
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And let's stop there for a minute for people who didn't listen to our last podcast.
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Tell them a little bit about your background so they understand where you're coming from.
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I am a New York State licensed master level social worker and I went to social work school at Adelphi University, which is a local university.
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I have 11 and a half years working.
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I worked in a special ed preschool as a special education social worker.
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I worked in a community agency as the director of autism services and we had the children on the spectrum.
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We had kind of a.
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We had a mixed group.
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We had children that had very high support needs and would elope they meaning they'd escape from their houses and it was which is really traumatic and we had children with lower support needs.
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But I've worked in different populations as well.
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When I was a social work intern I worked in a counseling agency with clients from the criminal justice system, many of whom had gotten DUIs and were mandated to come in for counseling, and I decided I didn't want to stay in that drug alcohol field.
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I just I wanted to switch.
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So I have what you would call a varied background.
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I've also worked in foster care and when I was working this is a long time ago when I was working in foster care, we one of the local cable news stations.
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They wanted to feature the children who were freed for adoption, so there were three nonverbal kids and they were.
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They had been freed for adoption and they needed to interview one of the caseworkers.
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So that's how I got chosen.
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So I still have it.
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I didn't even have cable at the time.
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My friend, it was on HBO, it was on cable.
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We didn't have it, so a friend videotaped it for us so I still have it.
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It's actually on a videotape in combination with my family's home movies.
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Oh cool.
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And also you have personal experience, if you want to touch on that a little bit.
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Yes, I do.
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My son has.
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He was diagnosed with autism spectrum disorder when he was not quite four and he has low support needs.
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Right now he is.
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He works for my husband in my husband's business and and he's very, he's still.
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He's grown.
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He hides his light under a bushel.
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He thinks that he can't do a certain thing and I say to him what do you mean?
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You can't do it.
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This is beautiful.
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So he's still developing, but autism is very, it's very misunderstood.
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People will ask me, people will ask me questions and I'll say, no, that's not really true.
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That's not the case with him.
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Very it's very misunderstood.
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And there are unfortunately, generally speaking, in school districts which is another reason why parents are afraid to ask is that parents of typically developing children are deathly afraid that the kids with special needs are.
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They're stealing all the resources and my kid won't get anything.
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Well, I'll tell you what that's.
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That's a little bit concerning that they think that but, considering their children, are getting all the resources already.
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But what I like about the fact that you have a son, that you have walked the walk, you've talked the talk, you've experienced it on a daily basis.
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So when you are working with a parent who has a child who needs some advocacy or needs some help, you understand what that is to come from a parent perspective, because that's a very emotional place to come from.
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When it's your child and you're trying to advocate for your child and you're running up against people telling you, no, we can't, no, you're not entitled I mean you know, knowing full well that you probably are they're trying to stop you from getting it the fact that you are that parent and you can understand how that parent is feeling in that moment.
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Right.
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So there's this connection there that happens because you're looking at that parent and go I've got you.
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I know how this feels.
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I know the tears you've cried.
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I know the tears you've cried.
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I know the times you've smiled and been happy for progress your child has made.
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I know the emotions you go through on a daily basis dealing with everything you deal with and that's powerful, that's very powerful that you can walk alongside that parent knowing exactly what they're feeling.
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So I love it.
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I love the fact that you have that and I think that's a, that's like an extra gold star on your forehead.
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It's it's more than just being a social worker or an advocate.
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Anybody can learn that and they can read books and they can put it into practice.
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But when you have that extra, that extra piece, that you have walked that path and you can help them along their path, that's just amazing to me.
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Thank you.
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That's like the cherry on top of the sundae, thank you.
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And add the whipped cream on top of it too.
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So let's get into this with the school districts, because, yeah, I've run up across this myself personally.
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But so why isn't school district telling you what you need to know in order to help your child?
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There are two reasons for it.
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One reason is that and if we want to judge people favorably and I do try to do that one reason is that an administrator, even though they're administrators, they may not be fully aware of what's available.
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They may and probably have been misinformed by special education law, because if something is repeated often enough, nobody questions it, it becomes carved in stone.
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It's like oh oh well, that's the truth.
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So that if I'm trying to think of an example, example, so not that they would say this, but there are, there had been people who.
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It's less so today, but it was very problematic several years ago If, if enough people had said to a parent oh well, you don't want that your child is, is being going to be labeled.
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Well, that's another reason.
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You know that they're afraid to ask, but getting back to with the schools, they again, they might not be informed.
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And the other reason, which I mentioned a few minutes ago, is money, because special education services, they are more expensive.
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There are a lot of kids with dyslexia and to hire a certified individual to teach them how to read, based on the science of reading, is that that's expensive, that that's very expensive.
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So there's well, you know, if we don't have to spend outside money, and we'll, you know, we'll just keep give them academic intervention support, that'll be fine.
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We'll have no accountability.
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So the two reasons one, lack of being informed and two, money.
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And it's a shame that those issues are there to have to deal with.
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And you can understand in a way where an administrator, who has all these responsibilities for all everything in the school, could maybe be unaware, but at the same time, that's their job and there should be somebody in that school district or in that school that is assigned to know the laws and what the rights are, instead of just fumbling their way through it.
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Funding, we can understand, obviously.
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I mean, you know that's life.
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However, when your child has needs, by law the school system has to provide it, and people don't understand that and so they'll take the wait and see answer from teachers or from administrators not knowing.
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Well, no, you can push this.
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I mean, I have a friend who sued the school system years ago because they were playing these games with her and she's like no, absolutely not.
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And the minute she lawyered up, guess where the money all of a sudden appeared.
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Ok, yeah, not that everybody needs to lawyer up, but she had had enough.
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She went, she went through the processes, through the steps, did everything she was supposed to do as a parent, and then had enough because they kept trying to roadblock her and she's like fine, that's your stance, I'll get a lawyer and you can talk to my lawyer and all of a sudden, miraculously, money appeared and services appeared.
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Right, of course, two things about lawyers and I see this on Facebook all the time People will say my child isn't getting services.
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Who can recommend a lawyer to me?
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That's not the first place that you go.
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And if, if a lawyer says, I'll help you for $7,000, which is what they say minimally even more, no, you don't want that, because what you want to do is you want to keep as good a relationship with the district as you possibly can.
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And so if you go let's say you go in with a lawyer they have to bring their lawyer in, which means they're paying their lawyer, and frankly, I'd rather see your child get the services and have the money spent that way than having them pay their lawyers.
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It's just exactly, and also and it makes things it makes things more hostile.
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That's the first thing.
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Number two the lawyers.
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By and large, they're not supposed to go into the IEP meetings.
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They're really there for due process.
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If you are suing your district for a non-public school placement, then you want to go to the lawyers, and that's not.
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I stay out of that and I would refer a family to a lawyer.
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That I tell parents.
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If you're going to do that, you really have to have a very strong stomach because, one, it's time consuming, very time consuming, and two, it'll eat your bank account alive.
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It's just and it goes, and also, it goes on and on.
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And the third thing is that the school districts, many of them, have deep pockets.
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So even if you prevail, they could say, well, I'm appealing this, and they could win.
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Yeah.
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Yeah, your best bet is to try to work with the schools, try to do what you can get an advocate, do whatever you need to do there, but there are times when they need to get their bell rung a little bit, I guess, and that's when the lawyers step in.
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But when you talked about don't bring your lawyer to the IEP meeting, should your child be allowed to attend their own IEP meeting?
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Well, this is that's Well, that's interesting.
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By law, once children turn a minimal age of 16 and probably even younger, 14, you should start talking about life after high school, whether it's college, whether it's employment, whether it's a day program for the child, and they should be included at that point.
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Now you can.
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My child only went to his meeting once because he actually he was in high school and he said, mom, I want to go to the meeting because I want to change my math class.
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I said, okay, there are parents who have brought their younger kids to the meetings, but what they do is they'll do a video and they'll introduce their child by video.
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Or their child will have written a letter saying this is how I feel.
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Or the child say seven or eight, comes in for 15 minutes or so and then the grandparents take the child out to McDonald's.
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So, it's really when they're under 14, it's really it's up to the parent In certain cases.
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I wouldn't bring a child my child when he was little, when he was like seven or eight.
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He couldn't, he wouldn't have been able to attend.
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He would have been like he would have been all over the place.
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He couldn't do it till he was like seven or eight.
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He couldn't, he wouldn't have been able to attend, he would have been like he would have been all over the place.
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He couldn't do it until he was older.
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But I like the idea of if the parent feels comfortable that the child could make it through the IEP, or even like part of it, like you said, at least expressing how they feel through a video or through a letter.
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You're talking about a person and what is going to happen for this person or not happen for this person, and to the level that they can understand that.
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I think that's important that they're involved in those decisions that are impacting them and could have an impact for their entire life, right?
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So I think it's a cool thing if people can do it and if they feel comfortable with their children doing it.
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When they're younger, and especially as they're older, like you said, these decisions that they're being made are impacting them after they're out of school, whether they go to college, trade school, employment day program, whatever it is.
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They have a right to express how they feel and what they want or need, and I think that's important.
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And I know let's step back for a minute.
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I know, with my son and daughter-in-law, I was in an IEP meeting for my granddaughter and we talked about this briefly in the other episode, but I want to reiterate this again Don't be afraid to say could you please explain what you're saying.
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Don't be afraid to say could you please explain what you're saying, because they throw out all these acronyms you have.
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First of all, it's intimidating.
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You walk in a room, you have all these people sitting around looking at you and it's nerve wracking at first.
00:22:36.420 --> 00:22:43.040
And then they start spitting out all these acronyms that they all understand and I remember going stop.
00:22:43.040 --> 00:22:45.896
You need to tell them exactly what you need.
00:22:45.896 --> 00:22:48.914
I just basically said you're basically speaking the foreign language here.
00:22:48.914 --> 00:22:53.494
Could you please explain to my son and daughter what you mean by all of this?
00:22:53.494 --> 00:22:56.521
And they were very kind about it, they were great.
00:22:56.521 --> 00:22:58.013
They just they do this so much.
00:22:58.013 --> 00:23:00.441
They just forget, right it's just normal for them to do that.
00:23:00.849 --> 00:23:03.016
So don't be afraid to call them on it and go.
00:23:03.016 --> 00:23:10.361
Excuse me, I don't understand what you're saying and don't worry about it making you look like you're stupid or uneducated.
00:23:10.361 --> 00:23:10.842
I didn't care.
00:23:10.842 --> 00:23:22.582
I was like whoa, back it up Like you need to explain this so they can make an informed decision for their child and not just agree because they're intimidated by all these people around the table looking at you.
00:23:22.582 --> 00:23:26.106
Right, it's important, it's important, it's important.
00:23:26.829 --> 00:23:29.098
Well, how can people find your book?
00:23:29.098 --> 00:23:32.655
Now, we'll put a link in the show notes so people can definitely find it.
00:23:32.655 --> 00:23:34.816
It's an ebook, so they can download it right away.
00:23:34.816 --> 00:23:40.961
Yes, let me just tell you I downloaded the computer, but download it to the phone.
00:23:40.961 --> 00:23:56.554
If people would download it to their phone that they have this handy, that when they're in an IEP meeting and they're preparing for an IEP meeting, they can scroll down and go, oh, I need to ask about this or oh, this is a good question I need to ask.
00:23:56.554 --> 00:24:04.118
So in your book, do you have, do you provide I'm assuming you do a list of questions that should be asked during meetings?
00:24:08.366 --> 00:24:17.590
That's very interesting, I don't, you know, I don't think that I did specifically, I think let me go back to.
00:24:17.590 --> 00:24:19.194
I'm going to go back to the book now.
00:24:22.006 --> 00:24:24.134
If you didn't do it in this version, you can do it in the next one.
00:24:25.486 --> 00:24:26.087
You know what?
00:24:26.087 --> 00:24:30.933
It's interesting that you should say that, yeah, I'm already thinking about the next book.
00:24:30.933 --> 00:24:33.525
That's a very interesting question.
00:24:33.525 --> 00:24:42.038
I was more general and I was also pointing out pitfalls.
00:24:42.819 --> 00:24:42.960
Good.
00:24:43.944 --> 00:24:44.826
Danger zone ahead.
00:24:44.826 --> 00:24:45.826
Good pitfalls, danger zone ahead.
00:24:45.826 --> 00:24:55.156
One of the things a very, very big pitfall is children are getting have been suspended.
00:24:55.156 --> 00:25:09.147
For of course we want to keep the school safe and of course you know if there, if a child is, if there's a major tantrum going on, we want to be able to handle it.
00:25:09.147 --> 00:25:15.137
But I can tell you that I, a few years ago, I had a child suspended, middle schooler, with adhd.
00:25:15.137 --> 00:25:28.695
He walked up to this, the um school water fountain and instead of drinking from it, he was washing his hands from it and that was suspension worthy are you serious?
00:25:29.026 --> 00:25:29.770
oh, I'm serious.
00:25:29.911 --> 00:25:38.817
I'm completely suspended him for washing his hands in the fountain I mean it was the wrong thing to do, but all you had to tell him was no, we need you know.
00:25:38.817 --> 00:25:39.446
That's not.
00:25:39.446 --> 00:25:46.569
The fountain is not for washing your hand like go, you know, go to the boys room, oh yeah it sounded to me like they were looking for a reason to suspend him.
00:25:47.271 --> 00:25:54.352
Yeah, yeah, I mean in some cases let's get real the teachers are annoyed and they're don't have to deal with these kids, so it's easier to go.
00:25:54.352 --> 00:25:56.025
Oh, he washed his hands in the fountain.
00:25:56.025 --> 00:25:57.547
He's out for a couple of days, I'll get a break.
00:25:57.547 --> 00:26:02.113
I mean, seriously, that's ridiculous to suspend a child for something like that.
00:26:02.113 --> 00:26:04.896
I'm sure you have all kinds of stories.
00:26:04.896 --> 00:26:07.800
Now tell people how they can find your website.
00:26:08.825 --> 00:26:11.388
So my website is the site.
00:26:11.388 --> 00:26:23.531
It's wwwspecialneedspronet, and when, when you click on it, you go to, it would be the pull down menu and you click on ebook.
00:26:23.531 --> 00:26:31.107
And I did what Amazon does with their books you can read the first three pages as a preview.
00:26:31.670 --> 00:26:33.252
Perfect, Now that's awesome.
00:26:33.252 --> 00:26:33.795
That's awesome.
00:26:33.795 --> 00:26:34.856
I'll also put.
00:26:34.856 --> 00:26:41.486
So I'll put your website in there and also just put the link directly to the book so that they can easily access it.
00:26:41.486 --> 00:26:45.974
But we want people to educate themselves to that.
00:26:45.974 --> 00:26:51.535
There are advocates out there that do what you do to help them navigate this.
00:26:51.535 --> 00:27:01.791
This is not an easy thing to navigate through all the time and sometimes you know it's like you need a roadmap, you need a driver, you need someone to kind of tell you which way to go, and it's great that you're there and you do it.
00:27:01.791 --> 00:27:04.454
And I applaud you for what you do because so many people need it.
00:27:04.454 --> 00:27:04.998
So many people need it.
00:27:04.998 --> 00:27:06.383
And I applaud you for what you do because so many people need it.
00:27:06.383 --> 00:27:06.865
So many people need it.
00:27:07.204 --> 00:27:10.695
Thank you All right, what final message do you want to leave with the listeners?
00:27:13.644 --> 00:27:20.276
This is suspensions which I just mentioned are increasing to everybody listening.
00:27:20.276 --> 00:27:41.315
If you get a phone call from your school saying come and pick up your child and that call didn't come from the school nurse saying that your child has a bad cough or seems like he has a fever, if you didn't get that kind of call, you sit on the other end.
00:27:41.315 --> 00:27:45.670
If they say, oh, come and pick up your child, he seems a little unhappy at school.
00:27:45.670 --> 00:27:56.547
Today has nothing to do with physical illness, that's a suspension and they need that must be put in writing and it can get.
00:27:56.547 --> 00:28:01.476
It can get very tricky because the school they can act.
00:28:01.476 --> 00:28:04.449
They can act like bullies and they often do.
00:28:04.449 --> 00:28:16.051
But you have to be firm with them and if you go to school and pick them up, say to them okay, now this needs to be recorded as a suspension and then put it in an email.
00:28:16.051 --> 00:28:25.979
Follow up with that phone call that you get, because the phone call saying pick him up because he's not doing his homework, no, Ridiculous, Ridiculous.
00:28:26.644 --> 00:28:26.987
There we go.
00:28:26.987 --> 00:28:27.528
There's another.
00:28:27.528 --> 00:28:31.371
They're trying to get rid of him or her for a couple of days.
00:28:31.371 --> 00:28:33.117
That's no, that's good advice.
00:28:33.117 --> 00:28:34.623
So parents need to.
00:28:34.623 --> 00:28:44.316
If you're called for a suspension or you're called for something other than like they're sick, like the nurse is calling but he's unhappy, he's not doing his stuff, Document that as a suspension.
00:28:44.316 --> 00:28:46.308
Follow up with the school with an email.
00:28:46.308 --> 00:28:48.405
Um, keep track record and nancy.
00:28:48.405 --> 00:28:49.227
You bring up a good point.
00:28:49.267 --> 00:28:59.922
We'll wrap this document document document yep, all the time, all the time you can't do email emails, phone conversations.
00:28:59.961 --> 00:29:07.192
If you get off the phone with the teacher, you start writing notes down immediately date, time, what happened, who was present, definitely, and what happened.
00:29:07.192 --> 00:29:09.455
You know what was the outcome Constantly.
00:29:09.455 --> 00:29:10.520
Keep a running record of that.
00:29:10.520 --> 00:29:12.647
That's valuable information, valuable.
00:29:12.647 --> 00:29:14.852
Well, thank you for being here again today.
00:29:14.852 --> 00:29:24.791
I'm so excited that you're here and that you are doing what you're doing and you've got this book out that's going to help parents and just keep up the good work, girl.
00:29:24.791 --> 00:29:25.452
Keep it up.
00:29:25.953 --> 00:29:28.766
Thank you, thanks, pam, all right, you take care.
00:29:28.766 --> 00:29:32.315
Thanks, take care All right Stay home.
00:29:32.315 --> 00:29:32.875
Okay.