Ep. 12: We Need to Teach the Teachers

Parenting Severe Autism mom and podcast host Shannon Chamberlin shares another small win for her family, along with some of the struggles they have faced with public schools. 

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Hello, and welcome to The Parenting Severe Autism podcast. I am your host, Shannon Chamberlin. I'm so happy that you're here with me today. 

This episode is focused on educating the educators, you'll be able to find the transcript and show notes at psa.buzzsprout.com. You're also welcome to click that support the show link if you'd like. 

And, before I get started with this episode, we had a little breakthrough last night, I'm very excited to share it with you. It was bath time, and over the last three years since we've experienced our role reversal, Dad has been taking care of most of the bathing and grooming. And one thing he's never been good at the entire time I've known these guys is chopping the toenails. He's always afraid that he's going to disturb the child in some way, and it's always just been my job. And he never minds it when I do it, so it's just the thing that I do. However, over the last three years, with dad doing the bathing, it's usually done at a time when I am busy with something else or I'm not home. And lately, the child has just been cutting bathtime short whenever he wants to.  He'll pull that drain plug, and even if I'm around, it's just at a time that I'm not up there, I'm not ready to take care of the rest of the grooming, and then I forget and I feel so guilty. But the thing is, I keep noticing his toenails are way too long. I keep telling him doesn't this hurt? W hen I finally get there, you know, I hear him pulling his socks on and his toenails just ripping through the sock. And I'm like, wait a minute, time to cut these toenails. And I keep just getting on him about it and kind of scolding him and telling him Hey, man, you have to tell me. If you're gonna take control of your bath time and you're going to jump out of the tub whenever you want, you at least have to tell me or tell Dad, my toenails hurt, my toes hurt, my feet hurt, help me - something! You have to say something because you're almost 22, and we're not babysitting you the way we used to. You know, you have to help us. You have to say something. Well, last night, he popped the drain plug on that bathtub earlier than I expected him to, and I was right in the middle of laundry and he came down to the laundry area. I was busy folding clothes, and I asked him Are you ready to get dressed? You know, you're all done? And he says, wait, wait.  Cut the feet? Cut the feet? Cut the feet? And I realized he's telling me he needs his toenails cut. I was so happy! I made a big deal about it, how smart he is, good talking and all that jazz that we always do. And I got the clippers and we went up to his room and I clipped his toenails. I was so proud. So I just wanted to share that with you.  Little things make a big difference, right? Isn't it great when they learn?  Sometimes, I feel the hardships of this lifestyle cast such a dark cloud that it's hard to find things to appreciate. So it's the little things like that, that just kind of brighten my day and tell me that it's working. Things that I'm doing and saying to him, they work sometimes, you know?  

Can you remember a time when you were able to observe your child performing a function independently without direction for the first time? You know, it's one thing for a neurotypical child. I remember when our son was 17, we were kind of forced into a large family dining out situation and I was so enthralled by his three year old nephew eating with a fork. I couldn't believe it. I was telling everyone Hey, everybody, look, look at this kid! He's eating perfectly with a fork! Look how he's holding it. It's getting the food right into his mouth. It's amazing!  And nobody was impressed. Here I am, across the table from these two kids. My 17 year old is two chairs down from that boy squeezing all of his food through his fingers in both hands and shoving fistfuls of food just onto his face, anywhere near his mouth is fine, just whatever, it'll get in there somehow. And then two chairs down is this peaceful three year old perfectly holding a fork and shoving little bits of chicken into his mouth and chewing them and swallowing them nicely and then taking another and it was just so exciting. Apparently that's normal. No one else cared. But I thought it was amazing. 
Now for our kid, you know, the first time I saw him write something without being told was the experience that I hold near and dear. It was amazing and enlightening for me. It made me so proud and I'll never forget it.

It was a beautiful day. I gave our son a box of sidewalk chalk because I wanted to sit outside and of course he wanted to be attached to me. So that was the only thing I could think of and I showed him what to do. I grabbed a pink piece of chalk and I wrote my name and I wrote his name. And I wrote, I drew a heart, you know, and I drew something else, I'm sure because I was always trying to draw pictures for him. And then I just left him to it. I said, that's what you're supposed to do with the chalk, here's a bunch of sidewalk, have a ball. And I went over and sat in the shade and was trying to enjoy a little bit of time outside. And within a few minutes, he came over about two feet away from me with a yellow chalk in his hand, he crouched down on the sidewalk, and he drew, he wrote a 'y', then he moved over just to the left of that, and he wrote an 'o", then he moved over to the left of that, and he wrote a big capital 'T', and I realized what was happening, and it was so cool.  Right? That was amazing. So then he moves to the right of that word. And he begins to spell 'story' the same way with the 'y' first, and then moving to the left and writing each letter. And then when he was done with that, he went to the right of the word story, and he wrote a 2.  That's one of his favorite movies, Toy Story 2, and that's the way he wrote it. And I got to see how his brain works. He did that all by himself. I didn't ask him to write that down. I didn't ask him about movies. I didn't ask him anything. I didn't give him any instructions. In fact, I did exactly the opposite. I had a pink piece of chalk. I was on the other side of the yard on the sidewalk, and I was drawing pictures and writing our names, it was completely different. So that was all on him. And it was so cool. 

I reflect on that experience, often, especially when I think about the effect that public schools have on him and others like him. Now, you may be thinking, What do you mean, "others like him"? All of our severe autism kids are different. Exactly. They're different. I think one thing they all have in common is probably that they're unable to conform to the public school system's rigidity.  How does your child get along in the school system, especially after the age of 10?

We have come up with several self- invented ,creative techniques to educate the educators over the years.  It's just been born out of necessity.  We have done everything all at once. I would write letters to the school. I wrote a letter  it was like a form letter almost, and just how to teach my son.  Also, yes foods and no foods for my son. And I would just email it to the school every year, every quarter, every school, just everyone got these letters. And if they needed changed, I would change them. And just I always sent that, you know, this is the first thing that they get when they meet us are these letters of how to help our child function, right? He has a special diet and we know what works for him. So I would send him food, I would make it at home, heat it up, put it in a thermos and send it off. Or I would make a big salad with ranch dressing and chicken and all the stuff that he could eat and just send it with him because I know what makes him happy. And I know what happens when he gets disappointed, especially about food. And that's something I didn't want happening at school. So I would do all all of these things. But then also whatever I was trying to convey to the educators, I put it everywhere that I could think of.  I would safety pin a note to his coat, and I would put the same note on his backpack, the same note would go in his school folder, when they would go to check that every morning, it would be there.  It would be on his lunch bag or lunchbox and, and I would even write a message down, fold it and give it to the child and say give this to the bus driver. And I mean, it was only a few steps from me to the bus driver. So I knew that he wouldn't forget. And I would watch him and make sure and I would you know point wildly. If it looked like he was going to forget I would point at the bus driver down to the child look, look, look, you know, and we would always make sure that he would give the bus driver a note. Sometimes it was about that bully girl, like keep that girl away from my boy. But most of the time it was please give this note to the teacher. So it's just so important. You know, to get your message out, of course, we would email and text if allowed. And I would call the school and leave messages for the teachers. And we just I know that sounds like overkill, but have you met our kids? I mean, we kind of need that right? And the teachers, they just they don't seem to respect him and they don't seem to respect his needs or our needs. You know, they don't seem to realize that if they mistreat him at school, we are the ones who suffer through it at home, not them. They don't have to. It's just like when grandparents take the grandkids out and spoil em and pump em full of sugar and then send em back home. Grandparents don't have to deal with that sugar rush and fallout later. It's the parents and that's for all kids, right? So it's kind of the same principle. His dad has even met with classrooms with the teacher and the students. We'll just arrange a time before we allow our kid to go to school. His dad, who is an excellent salesman and presenter and speaker would go to the school, meet with the kids, explain who our son is, how he relates to the world and how he understands things.  All the things he doesn't understand, like social cues, and you know, looks.  If you try to look at him and communicate with a look, he may not understand, all that kind of stuff.  We just want everyone to understand who he is before he gets there. And it was working out really well, it got the kids, it was kind of, you know, a buy in getting the kids to understand who our son was, and look forward to meeting him and look forward to helping him through his life and protecting him. And you know, it was it was a really good arrangement. And I highly recommend that if you have the strength to do something like that it was really beneficial for our son and the kids really stepped up to be mentors for him. That's the calling, you know, the call to action for the kids is, hey, he's gonna need your help he you have to be a Big Brother or Big Sister to him, please don't look down on him. That's not what he needs. And that's not what you need. What's going to help you develop is to help him develop, you know.  

But you know, honestly, we just feel there's not an opportunity to really work together with these educators.  We think it would have been so much better for everyone, if there were a timeframe or us as parents to work alongside the educators.  Not in front of the students, but just have private workshops of: here is the education they didn't give you at college, you know?  And it just would have been a lot better. But after all these years of troubleshooting, neglect and seclusion, we have come to realize that public school is just flat out wrong for our kid. It breeds anxiety and discontent in our child.  I always wonder, how would his life be now, had he been given the freedom of a discovery-based education system, instead of this conformist school education that he's been forced into? 

At eight years old, our son was very happy. He and I had a really good relationship. And I always understood him. I always knew what he wanted, I could see him from two rooms away. And know, this is what he needs right now. This is what he's looking for. And I would go and make sure that he got it.  He could point and grunt, and he would get what he needed. I knew exactly what he wanted. And one day, I realized, after communicating that way with him for a couple of hours, I realized, you know, we haven't even said a word to each other. All he has to do is point and grunt, and I'm just Johnny on the spot. There it is, here's what you want, be happy. There you go, you know, and I realized, that's really not the best way to help him get prepared for the future. I want others to be able to understand what he needs and what he wants and help him get through his life. I can't just cater to him and allow him to grunt and point because not everyone's going to understand that. You have to think that one day he's going to be you know, like 40 years old, and I don't want him pointing and grunting at other people and expecting them to know what to do. Nobody's gonna want to deal with that. Right? So I started teaching him that this is not going to work, you know, and it was really, really hard. I made him use words, you know, it was so hard. I could just - I had to stop myself every time he would point or grunt and I just No! I'm not gonna do it, you know? And I would have to say, what do you want? What do you want? And then he would try and you know, we just always had a thing "I want..." and that was how we started his sentence for him. And if he didn't know it, I would teach him the word, you know, he would point at it or walk over to it and gesture towards it. And I would tell him what the word was. And that's about the time where the whiteboard came into play, that I'm always talking about. We needed him to learn words so that he could get along in this life. And he was not opposed to it. He just didn't know the words. So he would grunt and I would bend and get it, you know, but he started using the words and everything started getting better as far as communication. And I think that he probably felt better because he could tell other people what he wanted. You know, he likes that little independence. I think I know that he likes when he accomplishes something. So I think it was a really good move.  
At about nine years old, he came home from school all amped up one day. And he you know, he always is scripting about movies and cartoons and characters and things like that. And one day he came home and you know just really giddy and giggly, and he kept saying Captain Woodica and I didn't know - I'm like searching my brain like is this? Is this a character? I don't think so. So then I finally asked him What are you talking about Captain Woodica? Who is that? And he just kept saying it. I said, Who is that? Show me who is that? You know? And he finally opened up a coloring book and showed me a picture of Captain America. And I said okay, you know, so I tried teaching him That's Captain America. And he just kept insisting on saying Woodica. Captain Woodica. And you probably have picked up by now in these episodes, I'm pretty patient with him. I will work with him for a long time.  As long as it takes to get a result, you know, but with this for some reason, I just didn't have the patience. I worked with him for under 10 minutes and I just kept it's one word, you know? You're saying Woodica, I need you to say America. And I know that you can't pronounce your R's just do the best you can. It's definitely not Woodica. And he just kept saying Woodica and I just took a big breath, closed my eyes for a minute. And then I looked him straight in his eyes. And I said, Jacob, you need to be able to say, America. You have to be able to say it. And he looked at me for a couple of seconds. And then he smiled, and he calmly said, America. So it worked. And then that's when I realized that you have to set standards for him. And I don't know, maybe not all kids are like that. I'm sure everybody's different. But for him, he needs a standard, it seems.  
At the same age, that was nine years old, the school was pushing for adaptive technology shortly after that, and I thought we were having great breakthroughs with speech at home.  He was learning new words all the time, his vocabulary was growing.  No, he didn't speak properly all the time. And yes, he was severely delayed, but we were having results, we were experiencing progress. And the school kept telling us, you know, they wanted adaptive technology or assistive technology, whatever it is, where the kid types and the thing talks for him. And they didn't, you know, they weren't offering it as a supplement to speech, they were offering it as a replacement. They wanted him to start typing, instead of talking. We were very against that, because he did have some words, we thought that we should nurture and develop the skills that he had rather than bury them. And you know, we just felt that using assistive technology to speak for him would have taught him that speech was not important. It didn't matter. Case in point, Captain Woodica.  I taught him it matters, you have to be able to say America.  All of a sudden he can say it, you know. I don't think it was a great idea to replace that with a computer program.  

Years later, he hated assistive technology. He hated the type and talk stuff. He didn't want anything to do with it. And he still won't use it. I've got a couple really good apps for him because he did lose his words, and I didn't see that coming, so maybe it wasn't a great decision. But he had words, he had a good amount of words, he was able to talk all the way up until he wasn't. You know.  But he refuses to use any of these apps that will talk for him no matter how cool they are. He doesn't want anything to do with it. He doesn't want to use any of the conversation apps that I have either. I don't know, maybe that was the wrong choice. But we really were against it at the time because like I said they weren't offering it as a supplement to speech. They were offering it as a replacement. I think they were actually trying to not have the speech therapist work with him which is unacceptable. He needs it he's speech delayed.  How does that help, to just remove speech from his life altogether? I just didn't see the good in that. Neither did his dad. 

You know, we find, especially with speech, but with most things that he will push the lazy envelope as far as he can. He responds best and actually shines when there are standards set for him when he's got to live up to something, you know? And I think that somewhere in there, it gives him a sense of accomplishment. And he likes that, you know?  There's - there's not much that gives him a sense of anything really, you know, so I don't - I don't want to take away anything that makes him feel like he matters. 

Here are a couple examples for you. You know, the same school that we believe abused him, had the bully, and we had to pull him out and we homeschooled him. And then that school said that once we returned him to the school a year and a half later, they believed that by us homeschooling him, we made him worse? That same school had a couple of things happen that I really didn't agree with. For instance, let's just say it was the first day of school, he I sent him to school, and he's always been able to say his name, Jacob.  He can spell it out loud. And he can write it and he can say it perfectly. Jacob.  All of that.  He knows his name. It's been drilled into him since he was a young tyke, it's very important.  What if he gets lost?  What if  he ends up in the wrong place, and he ends up having to tell someone who he is? He knows his name. He knows his dad's name, and he knows the city that he lives in. So that's pretty important. And he's always been able to say it. So on day one of high school at that school, he can say, Jacob.  By week four, he's coming in to the house after he gets off the bus. He's telling me that he wants something. And instead of saying I want this, he's saying Yia wants hungry or Yia wants food, and I'm like, Who? So he actually changed his name from Jacob to Yia. And I was trying to figure out where this came from. It never has been a problem before. But now he wants to say Yia.  Finally, after asking around and everything, I realized that this is just something that they allow at school, and they don't try to correct him and they don't try to educate him and they don't set any standards. And they just allow him to say Yia, so I had to write a note. And I, of course, email and paper note. I just overkill on that every time because I don't ever want to hear that, "Oh, I didn't get the note" you know.  So, I had to write a letter and tell them, my child's name is Jacob, and ever since he started going to school with you, he has changed his name to Yia. Now, that doesn't sound anything like his name, it even kind of sounds like a girl's name, I have a boy. And his name is Jacob, it is not acceptable for him to say, Yia.  That makes no sense to anybody. And if anyone ever needs to ask him for his safety, what his name is, he needs to be able to say his name. And it's your responsibility to make sure that he doesn't lose the pronunciation of his name, you're a teacher, make sure that you get it right. And another one that happened at that school, also, within a short amount of time is they used to always send home his - his work, you know. And I don't, I don't even know why. But I'm glad they did, because I got to see how bad they were doing at their jobs. Do you remember being in like preschool and kindergarten and working on your letters, and you had the paper with the two solid lines, and then in between those was the little dotted line? So that was to help you form your capital letters and your lowercase letters that would go underneath the dotted line? That's what he was working on when he was about, you know, 14 years old. That's the paper they had him writing on. And they would have him write some words, and the writing was terrible, it was all over the place. And he could fit two to three words in one line. One line. And it wasn't even within the lines. It would be so big that it would take up one of those segments and a half of the other segment. So on one full sheet of paper, he might get about five words all together on there. And it was just ridiculous. You know, I'm getting pages and pages and pages of just nonsense. And I finally I couldn't take it anymore. I kept sending notes, Jacob can write better than this. This is not good. He can do better. This is not any better. Please make him do better, you know, and they never did anything about it. So one day after he got home, I told him what a great job he did at school with all his work. And I gave him his snack. And then I asked him to sit down at the table. I want him to write something to his teacher for me. And I wrote it down on a piece of notebook paper the way that I wanted him to write it. And the note was 'Dear teacher' and a comma. And then on the next line, 'I can write inside the lines.' And he wrote it, he started writing it and it was just too sloppy. You know, in the first two words, dear teacher as No, no, let's start over.  Now, I gave him a piece of college ruled notebook paper, not kiddie paper, adult paper. And I told him, I want you to write small and stay in the lines and do a good job just like I did it. You do it. He said, Okay. So he writes the whole thing out, and I told him what a great job he did. And I wanted him to do it four more times, or however many times it took to get the whole sheet filled up. And he wrote that I sent it to school in the notebook of you know, assignments and everything. And the teacher had no choice. She had to respond. And she writes, oh, wow! I had no idea. How did you get him to do this? And I told her, I wrote the example. And I told him to do a good job, write small, and write inside the lines.  Duh. 

I hate the way everyone treats him was such disinterest!  Show an interest in my kid, you know? You'll get results. I can tell that you don't care. I am not a teacher. He doesn't like taking classes from me. But I get results because I care. That's all he needs is someone to care. So they just kind of show their hand at that, you know, and of course, all of that stuff goes into his school records. And mainly the label of you know, crazy family pulled him out of school and homeschooled him and made him worse... that followed him to the next school. And that's the school he got kicked out of. And I just don't think that that was very cool. I don't think it helped his case at all. It's kind of like that one Seinfeld episode, if you ever saw that, where Elaine is trying to break into her doctor's office or whatever, she's trying to steal her medical records because they labeled her as a difficult patient and she just couldn't get treatment anywhere. Everybody looked at her like she was crazy. And you know, that really does happen. I'm also labeled as a difficult patient. So it really happens. But it's detrimental to my son's case for sure. I I really wish that they would have done better by him for sure. 
How much better would your child's schooling experience have been? If you had been able to teach the teachers about your child's differences? I'm sure that you can think of some situations where you knew your child could do better. You know, it's a well known fact that even neurotypical people learn differently. You've probably heard of Sylvan Learning Centers, right? I'm sure that's why they exist. Everybody has a different way of learning. Some people need to approach it from a different direction.  As neurotypical people we're forced to conform in school and that is hard for some people. Now, apply that same structure for someone with severe autism topped with a learning disability and an inability to communicate. It's no wonder all of our kids end up getting kicked out of public school during the most difficult years of their lives.  
We deserve better than this. I am currently writing a book outlining what I consider to be the perfect blueprint for families like ours. Once it's published, I will be marketing that book to education directors and the like, in hopes that it will make a difference in the lives of others struggling through this severe autism life. If you are struggling with your child's educators and lack of options, you're welcome to send me the school's contact information via email at contact.parentingsevereautism@gmail.com -  I will make sure to send them the information on this book. 

I've got another book on the way as well, elaborating on my episode, Hindsight - The Best Advice We Never Heard. I will keep you posted on that one. And I'm going to post this episode on my Facebook page. So if you'd like to share that page or follow it, you're welcome. It's just called parenting severe autism podcast and that's a page on Facebook. Well, what a surprise. I am out of time! I thank you so much for listening. I wish you an abundance of strength and inner peace to get through the next few weeks of October. You hang in there. You're a superhero