Parenting Severe Autism
Parenting Severe Autism is a raw, unfiltered podcast for parents and caregivers raising children with Severe Autism. Hosted by Shannon Chamberlin - a parent, not a professional - this show is your emotional lifeline, real-talk resource, and reminder that you're not alone.
From early childhood to adulthood and beyond, Shannon shares honest stories, painful truths, small victories, and survival strategies for the families the world forgets.
Whether you're in crisis mode or just need someone who gets it, this is your space.
No fluff. No sugarcoating. Just truth, hope, and community.
Severe Autism and special needs considerations. This type of autism parenting is lifelong... it becomes adult autism parenting.
Seek caregiver support when possible.
Parenting Severe Autism
EP. 64 When Teachers Don't Listen: A Parent's Struggle for Understanding Severe Autism
Shannon continues sharing emails between herself and her son Jacob's teachers in Wisconsin, revealing the challenges of advocating for a child with severe autism in the school system.
• Ongoing battles with teachers about using food as a motivator despite Shannon's opposition due to potential eating disorders and specific dietary restrictions
• Frustration with teachers repeatedly asking for guidance already provided in Shannon's comprehensive instruction letter
• Teachers demonstrating defensiveness when Shannon suggests someone might be "unwittingly" triggering Jacob's behaviors
• Failed experiment with CBD oil
• Safety concerns with school van driver
• Hilarious and endearing story about Jacob shaving
• Recent breakthrough moment
• Importance of scheduling IEPs as often as needed and bringing advocates to meetings
Please share this podcast with anyone who might benefit, email your experiences to contact.parentingsevereautism@gmail.com, or support the show through the "buy me a coffee" link to help keep this resource free for those who need it.
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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 is another episode of Teaching the Teachers from while we were in Wisconsin. We had such a time and, to be honest, it didn't get any better once we left. That was the very best state for us to have him in, in my opinion, although we haven't been to a lot of other states, Illinois has been even worse, but we still have emails to share from January of 2018 through March and then in April. Unfortunately, we had to pack up and leave Wisconsin. Please remember, if this episode or any of my episodes touches you in any way, makes you laugh or cry or makes you mad or anything like that, please remember to share this podcast with anyone you can, in any way that you can. If you have comments or want to share your experiences, if any of the things I talk about rings a bell for you and you want to say something and let me know what happened on your end with something, please feel free to drop me an email. That would be contactparentingsevereautism at gmailcom. And, of course, you can always click the buy me a coffee or support the show icon and donate to help keep this free for those who need it. I'm trying to get up to a thousand downloads a month and I've got quite a ways to go. But the more that you share and discuss and all of that, the better chance I have. And what happens? When I get a thousand downloads a month, I get to buy advertising to reach more people. It just buys me some spots on other podcasts, but I'm trying to get a team effort here together, here at home between me and my husband posting on all the socials and hopefully that will help as well.
Speaker 1:Okay, so we're continuing with the fight about the food. I never agreed with using food as a tool. I just there's too many cases of eating disorders and OCD around food and it's just, in my opinion, it is not a healthy method. So that's why I'm always fighting with the teachers about using food. I think that they could probably use other things if they would just open their minds a little bit.
Speaker 1:I just don't want people using food to influence my child. I just don't, I just don't. And I think that we should have that right as parents, because you know you're training him to every he's not going to do anything good unless you give him a freaking cookie, and it's not fair. I don't want to live that way. I don't want to live that way. So I don't want my child focused on food and even though we have had that fight for all these years, my child is focused on food.
Speaker 1:I have some stories to share with you about that. I mean, it gets really, really bad and it's just his own thing, his own hyper focus, and it's just his own thing, his own hyper focus, whatever on food. It's terrible, and I'm so glad that I did not allow an entire lifestyle built around food motivators, because it's bad enough just the way it is. I just want to get right into these emails because it's just really the best illustration of what was going on in the communication and the teaching style and the mindset and everything.
Speaker 1:So I just want to get through these and I may drop some comments here and there, but the teacher wrote it looks like on a Monday morning, January 8th, Hi, I hope you had a nice weekend. My first question is if I want to use a cutie as a question is if I want to use a cutie as a manipulative, could he eat it or would an apple be okay, we are working on identifying fractions. If not, he wouldn't have to eat them or I can find something else to use. Second, I wanted to let you know that he is having a very hard time stopping the self-talk and movies. He keeps reciting Batman and other movies. I have redirected, had him take a break and wrote in the notebook. My next step is to call his dad have a great day. Please forgive me with my reading. My contact lenses are messed up and I can hardly see my stupid screen. I'm doing the best I can here Now.
Speaker 1:As you know, I had a food test done on all of us, and oranges is one of the things he cannot digest and I used to feed it to him all the time. I felt horrible when I realized that almost every food I was feeding him was not able to be digested and what kind of pain that was probably causing, and he can't tell me. But the lady who did the test explained to me what happens when we eat something we cannot digest. So he doesn't have the enzymes for certain foods. Oranges and bananas are two of those foods and he used to eat those all the time. So we did end up switching to apples. Okay.
Speaker 1:So my response was Jacob cannot digest oranges. I think grapes or organic apples are okay and of course they're not going to go do that. But yes, we are sticklers for that because of all the chemicals, as you know, we don't allow any food dyes or any kind of pesticides or herbicides or any of that stuff. We are completely organic and you know we're just doing the best we can. He's already polluted, I mean that's you know. Look at him. So he has to deal with that every day and I'm just doing everything I can to keep him from getting more buildup in his body. So we are very strict about what he eats buildup in his body. So we are very strict about what he eats.
Speaker 1:And she says, okay, I will find something else beside food. Oh, how about that? I can use pictures of fruit. Okay, I mean, a high five with my kid works great. You know, it is really good motivation. A double high five is really. It really gets him going. And if you even want to reward him more than that, you can use words and be upbeat about it. And you can even do patty cake high fives across the body. He loves that shit, you know. Hey, great job, you did it. Yeah, that kind of stuff eats it up. He loves it, and most of them do. I don't know why they go to food, you know. Just give him some moral support, anyway. So she says I can use pictures of fruit. I am going to call his dad, he's just not working.
Speaker 1:Okay, so four days later there is another message and the teacher says Hi, Jacob was in art and was swearing. Then she says I was just got out of first hour. Do you want me to call his dad? I replied three minutes later; If you cannot get him to stop swearing, or if he won't listen to you or the other adults around him, then you can either let him know that you're wanting to call his dad and see if he stops, or just call his dad if you cannot deal with him. And so I sent that and my reply to the parent advocate and to the therapists that were working with him. My comment to them was, I mean, come on... and really come on, how hard is it? I have explained this a hundred times. Why are you emailing me to ask me if you should do what I've told you to do when you're supposed to do it? I'm not there to babysit the teachers.
Speaker 1:I wrote that whole letter. I read it to you in my last episode. I did that for a reason. I shouldn't have to be interrupted from my work day to hold the teacher's hand and tell her whether she should call daddy or not. I fucking put it out there in a letter. I thought it was very concise. I thought it left nothing to the imagination, no stone unturned. I thought I did really well with my intro letter to how to deal with my son. And here she is constantly asking me, geez.
Speaker 1:Anyway, also I want to say that that stupid question about the oranges...
Speaker 1:I sent a list of the foods that are allowed. I did not leave a window for, oh, I'm not sure, I didn't know, so I poisoned him. Sorry, you know, I didn't know, so I poisoned him, sorry, you know I'm very meticulous about this stuff. I gave an entire list of what he can eat, because what he cannot eat is too long of a list. So I thought, well, I'll just make it easy and I'll just put what he can eat and basically, if you just remember that his plate can be green and white, if it's not green or white, he can't eat it, basically. So it's not that hard, it's just, You know, that's why I'm so aggravated as a parent of a special needs child, because I, man, I try, I try to make it as easy as possible so that they don't make me sound like this and talk to them like they are stupid. Okay.
Speaker 1:So anyway, the teacher emails me back and says he stopped swearing after several redirections. I wanted to see if that was something that you wanted us to call right away on or not. Thank you, it's up to you. You're the one dealing with them. It's your classroom. Come on, geez, I mean, you know right, do I make the rules for her classroom? No, if it's not okay, if you can't deal with it, then you call his dad. It's pretty freaking simple.
Speaker 1:So, anyway, I emailed her back, along with the other people that I always copy these to, and mentioned that the psychology of the phone call to his dad is that you can use it as a threat to get him to straighten up if your normal actions are not working. Occasionally, he will test you and you will have to prove to him that you will actually call his dad by actually calling his dad. I mean, what do you, you know? What do you want from me? Come on, okay.
Speaker 1:So apparently they had contacted us about his behavior earlier on this particular day. It was a Wednesday and I'm sending this email that I'm getting ready to read at 9 51 am. It says good morning, Thank you for contacting us about Jacob's behavior earlier today. Do you know if he is behaving this way with one certain para or with every para that is working with him? You mentioned that he shows respect for you when you enter the room and stops his behavior, which is great. We're just wondering if there's someone specific who is unwittingly encouraging his behaviors. And the teacher replies Hi, I think the behavior was due to another para being in the room when she's normally not in there. I asked her to leave and the behavior got better. We changed from Gloria to Mackenzie and his behaviors have gotten much better. As we both know, when routines change, it affects him. We have finals today, so there was an extra aid and she thought she was helping. I don't think it is that they are encouraging the behavior at all. I think it is due to change and not knowing what was going on. He also is more amped up in the mornings than he is in the afternoon. Having the lights down and taking calming breaths help. I need to work with them more on calming him before he gets worked up. They normally call me, but I was dealing with a crisis. I assure you that no one is encouraging negative behaviors on purpose and I will work on training them on calming techniques. Thank you for your thoughts.
Speaker 1:That's actually not what I was implying.
Speaker 1:Then I sent that over to the people, who I copy it to, and I told them these people are so defensive it is impossible to communicate normally with them. They're so concerned with assuring us that they're in control that our messages aren't even being read properly. We said unwittingly. She says on purpose, the focus is supposed to be on reading Jacob and helping Jacob, but it feels like it shifts more to self-defense. I'm sure she'll cry about this email before she goes to sleep tonight, and this is because she accused me of being mean, if you recall from my last episode. So this is how I look at her now. She's obviously very sensitive and I think that's correct what I was trying to say in this email is that maybe someone's there who's bothering him and doesn't realize that they're bothering him? And yes, she actually said that In there. She said there was another aide in the room that usually isn't there. Well, yeah, there you go.
Speaker 1:I didn't say she was doing it on purpose. I said unwittingly Maybe that was too big of a word, I don't know she was a pretty young teacher and I don't even. I mean, I guess anyone can be a teacher these days, isn't that true Especially? I mean, this was a public school, but private schools, you never know who's teaching your kids, right, you know. So this is a constant battle for me and I'm just such a practical minded person that this kind of stuff I just don't get it. I don't understand why these are even issues that we're going through all the time.
Speaker 1:So two days after that there's another email and she says 830am on a Friday, hi Jacob was squeezing a water tube with beads meant to help with his sensory needs and it popped. (He does that to all of them. He'll break every single one.) He will need new pants. I am so sorry that happened. I can only think that he used his nails or squeezed too tight and of course I wasn't upset. So I emailed her back. I said his home therapist gave him one of those and he did the same thing to it last week. His dad's on his way with some new pants. We were only, I mean, 10 minutes down the road, so, uh. So she says no, okay, thank you, no more water toys. Sorry again.
Speaker 1:Y you know, you don't have to profusely apologize to me for that. I mean, he's a perpetual five-year-old. He's always going to need a change of clothes. It's not a big deal, I don't mind. I, you know, they think. It seems that they thought that I was some kind of tyrant, you know, and I'll. I just want him to be treated fairly, that's all, and I want you to use your damn brain and use the tools that I give you. I'm not, you know, I'm not going to be upset about him getting his pants wet. He's a child, he's always going to be a child. We're ready, we're ready with new clothes. It's fine, no big deal.
Speaker 1:I just, I don't know, you know, it's just... It's just really discouraging and disappointing that this is the tone of the communications all the time. I don't know, maybe it's just me. Please send me emails if you think that... Maybe... you know, maybe this is better than I think it is, but I don't know. It just rubs me the wrong way. I try to be nice about it all. I'm the only one looking out for him, that's it. You know, I have to be. I'm in his corner and his corner only. So yeah, this was weird, I don't know.
Speaker 1:So I believe that this originated as a phone call from the school to us, and I think it was earlier in the day, on this day, which was a Friday in February, because the email came from the teacher at noon and she says hi, checking in, I hope everything checks out for Jacob. That's just the strangest thing to happen. My reply to her... this is so weird... I said, The nurse said... so, okay, so we had to take him to prompt care. T hey called us and this was what happened. The nurse said that that was her second patient with ladybugs in the ears. She checked him out and he's fine. No bites or anything like that. Thanks again. I mean, leave it to my kid, I don't know. So the teacher says oh gosh, that's so strange, since they are not really around right now. I mean, yeah, it was February, you know. I am glad he is okay and that it all came out. I was worried about an infection starting. Yeah, that was weird.
Speaker 1:And I don't know if you you're probably aware I mean, if you've been around for any length of time in life, you have realized that ladybugs tend to go dead in the windowsills, but then they come back to life when spring or the sun warms them up, even if it's not spring. So I don't know, it could have happened in his room, it could have happened in my office, it could have happened at school. I don't know where the ladybug came from, but he had a ladybug in his ear and I don't know how. I don't know if he was complaining about and I don't know how. I don't know if he was complaining about if he said ouch or I don't know, but he was. He indicated something to the teachers and they looked in his ear and said there was. They thought a ladybug, and it was. It was a ladybug and I thought it was really funny that the nurse at the prompt care said that he was not the only one to have ladybugs thank God!
Speaker 1:9.45 that same night she sent an email that his annual IEP was coming up.
Speaker 1:And you know, yeah, you get an annual IEP. But just in case you're new to my podcast and you're new to this whole IEP thing, you can have emergency IEPs whenever you want and you can have as many of them as you need to. I think there may be a reasonable limit put on there. You know you can't do one every day or something like that, but it's, the annual IEP, is the bare minimum, I guess is what I'm getting at.
Speaker 1:And we had already had multiple IEP meetings this entire time, from when he started school that year through the month of January. I
Speaker 1:sent a note note, this was February 12th, it was a Monday, and I sent a note, handwritten note, to the school and I got to where I was pinning the notes on his jacket, because they don't read the notebook and stuff. So anytime I wanted to communicate something and I wanted everyone to know, I would just put the note on his coat so that they, you know, they had to look at it, and he he allowed it. I told him it's for everyone has to see it, and I think I don't know he kind of liked it. He liked having that so that everyone had to stop and read his coat. I thought that he would fight me a little bit or just be irritated with having a piece of paper pinned to his coat, but he didn't really mind. He liked the attention and he liked it being weird. He likes anything that's out of the ordinary, I think.
Speaker 1:And the teacher emailed me at 8.43 that morning. She says Hi, I got your note about him not sleeping. He seems very upset and it is taking a lot to calm him. We can handle it. I just wanted to let you know. And I replied he was actually really happy and friendly and funny here at home this morning. There may be something setting him off, perhaps on the ride to school. She says I cannot say since I am not in there In the van. Duh
Speaker 1:. Gloria said he was fine until he got closer to Marion that's the town he went to school in. Did you have an idea on a couple of dates in March for an IEP? And I just said just let us know what works best for you. And she says okay, I'll get back to you. You can bring the van concern up at the meeting as well. I do not have the power to change who drives the van. All right, so let's get into a couple of these things real quick here.
Speaker 1:The van and Gloria. This is the lady that started driving the van because my kid couldn't handle the bus ride anymore. He went and flapped at her one time and she reeled back a little bit and he saw her do that and he locked onto that so she became his victim. Every time he got a chance he would flap at her. That is one thing.
Speaker 1:Then, another concern that we had about the van is you see, we lived in northern Wisconsin. When you get that far north, they don't take snow days. It's not like here in Illinois, where you get a few inches extra and they're like, oh, close the school. Or that you start getting threats of an ice storm around here and they're like, no, no school, no church, no after school activities, gyms are closed, everything's closed. No, not in Wisconsin. We asked about snow days one day and they laughed at us. They're like we don't do that around here, we would never get out of school. So they don't plow until they're damn good and ready. They wait until the snow is pretty well done, falling before they plow, but they also don't close school, so it can be a little treacherous and that's just the way they live up there.
Speaker 1:So this lady's driving a freaking minivan, okay, and there is a highway on the way to school from our we lived out in the country, and then you have to get on your way into town. So there's this highway and there's a highway on the way to school from our we lived out in the country, and then you have to get on your way into town. So there's this highway and there's a curve. It's a blind curve. I mean, you know you better move your ass and keep going, because no one's going to see you. And I don't know if you know this, but most of the people in Wisconsin are drunk. So you know, whatever, you've got to be careful. They're out there drunk driving. They don't get... I've met people with six and eight DUIs and they still have their license in Wisconsin. So you just have to be aware and you have to make sure that you're doing the right things as a sober driver, because lots of people are not.
Speaker 1:Okay. One day my spouse had to leave early in the morning as well, shortly after the bus, and he was heading into town, past where Jacob goes to school, and he sees two cars pulled over on this curve on a highway which is you know. I mean it was 50 mile an hour speed limit, even though there's snow and ice and everything it's. You know, you got to be careful. So there's right on the curve, the blind curve that you can't see until you get up on it.?
Speaker 1:There is a teenage kid with his like old car and a van behind the kid. And my husband sees this and he recognizes that there's trouble and that they're parked in a very bad spot and he gets off the road in his dress, shoes and everything stomps through the snow to go see what's going on. Are you guys OK, because this is very dangerous. And he learns that that's our son's van and our son is in the van and they're parked there on the curve and he says why are you here? Are you okay? Do I need to take my son to school? And she says, oh no, this young man was parked here and I thought he was broken down. So I stopped to help. And my husband's like no, no, you don't stop to help someone broken down on a highway with my kid in the van. This is dangerous, and so that became a whole thing. So not only did we have, you know, a little less respect for her because she was a victim to our son, because she lost her control that day, but now we don't trust her and now we think she's really stupid. So we contacted the school and the teachers and everyone and told them this is ridiculous and unsafe and we don't ever want to see this again. That's the deal of why we would want to be complaining about the van driver. I mean, you know what? The kid is old enough to drive. My child is disabled. What the fuck? I don't know. Why would you? No, it's not okay, it's not okay.
Speaker 1:About seven days later, there was a serious storm and they had to close school early.
Speaker 1:So another thing that might have been nice for Jacob to see the teacher write in the notebook, On March 1st, the teacher decided to email me Hi, I just wanted to let you know that Jacob is having a great day today. You know, that's the kind of positive reinforcement that I want you to show my son. You don't need to email me that. I'm glad that it was just such a bright spot in your day that you had to do that, but you should have put it in the stupid notebook so that he could see it. I mean, he wants everyone to be proud of him, not just me and his dad. He's with you for all these hours. You show him what you're happy with. He doesn't understand that you're emailing me. He doesn't know that.
Speaker 1:They sent me an email about some kind of training they were having for families, youth and providers. It was called What's After High School? They said it's a broad overview of the transition to adult life for young adults with disabilities and special needs and includes the following topics Planning for the future, the role of schools, long-term supports, vocational resources. Moving into adult health care. Supported decision making. Basics of self-determination. This training is ideal for families who have children age 14 to 21 and providers and school staff who work with young adults with special needs, and providers and school staff who work with young adults with special needs. Youth are encouraged to attend.
Speaker 1:So that seems pretty cool and I will say that we don't have any supports. We're in a different state now and whatever, everybody's turned him down. But I just wanted to read that to you so that if you have a kid below the age of 14, then this is something that should be coming up for you when your child is approaching the age of 14 or is in the age span of 14 to 21. Just keep your eyes out for that, and if you don't see invitations like this, ask, suggest and do everything in your power to see if they'll put something like this together for you. I'm sure that they do, but you just can't be too sure about the competency of people, so just be aware.
Speaker 1:Then, on March 5th, the teacher says hi, we have no idea why, but Jacob was having a really hard time in the lunchroom so we moved him up to his room to eat. He was fine, and now he is crying and cannot tell us what is wrong.
Speaker 1:Okay, now this brings me back to when she said that I told her about him not being able to sleep, and during these months, two months prior to this so this was in March so around December and January, I believe, is when I started getting into trying CBD oil for him..
Speaker 1:It was still not legal, so I went through I believe it was Charlotte's Web Company and I got, you know, the very best of the very best CBD for him and, you know, for me, and my husband too might as well. I started using that. I was convinced, because we didn't want to do pharmaceuticals. I was absolutely convinced, with all my experience and education in cannabis, that that was going to be like a major, major help for him and it was going to change our lives. I really thought that cannabis was going to just be amazing and I wanted to start with the CBD because maybe he didn't need the THC. But that plant is amazing. It heals all kinds of stuff and I thought, man, I really think that this is what he needs. I think it would calm him down, I think it would take care of this anxiety. I think that it would make him more cooperative and help slow him down a little bit so that maybe he can process things better. And they're using it for disabilities all across the country. They're using it for all kinds of stuff and I really I want to try this. I really think it's going to help.
Speaker 1:So I was able to get a discount. If you, you don't have to do this anymore, because it's legal almost everywhere. But you know, look, if you ever have to do anything like this, always ask if they have a hardship program, no matter what it is. I don't care if you're doing a stool test. You know something that they send to your house or any kind, anything that's just a little weird and is going to be out of pocket for you always ask if they have a hardship program and I mean I did and I was able to get a discount on this CBD. It was super expensive and they gave me a really nice deal. So that was really cool of them and a lot of companies will do that for you if you ask and let them know that you are experiencing hardships.
Speaker 1:I got him this CBD because of things like this email and the other one with not sleeping and stuff like that. You know, no one has any idea and he's just being set off and he's, you know, up and down rollercoaster emotions Also. I mean, look, he was 16, 17. So puberty and all that stuff and not being understood and not being able to talk. I mean there's just a lot going on. I was just trying to help him out and I start giving him this CBD. So I gave him his first dose and within In about 20 minutes he was significantly, noticeably more calm and he noticed it and I noticed it. I thought that I saw in his eyes and on his face that he was like, oh shit, this is working, I feel good. That's what I thought I saw on him and I was encouraged.
Speaker 1:I gave him his doses and I kept it as low as possible because with a lot of these types of things you want to be able to titrate up in incremental doses. You don't want to start out at, you know, banging with the biggest dose because then you'll never find the sweet spot. So if you start low and titrate up, that's the best way to find your sweet spot. Otherwise, you'll never respond to anything else favorably. So that's how we were doing it and I have to say that I never saw the same result as I did the first time. I religiously gave him the same dose for many days, probably a couple of weeks, never saw a change.
Speaker 1:So then, incrementally, I increased the dosage and I started seeing changes in the opposite direction.
Speaker 1:He would get irritable, more irritable, more angry, even though it, you know, I got one that tasted like mint. He loves that flavor and it was like mint and cinnamon and he just loves weird ass flavors like that. He loves sour apple and lime and you know just all kinds of weird stuff. So I thought mint and cinnamon would be probably right up his alley. It wasn't that he didn't like it, it wasn't that he was fighting it. I mean there, he could not help it. I could tell that this was.
Speaker 1:It was like when he and my husband would eat Doritos way back in the day. They both went psycho within minutes of eating Doritos and it's just the brominated vegetable oil and stuff like that that's in there and it just messes with your brain and it makes you irritable and it makes you want to kill people and it makes you not want to even hear other people's voices and stuff. I mean, that's how it is for my husband and my son can't verbalize how it makes him feel, but he acts the same way as my husband did when he was eating them and he loves talking to me. He loves listening to me talk. But after my husband would eat a little bag of Doritos he was ready to wring my neck and he didn't want to hear anything I had to say ever. It was just crazy. So that's kind of how Jacob started acting with the CBD oil and many years later, when I started working in dispensaries, I actually got a formal education in cannabis before I got my dispensary jobs.
Speaker 1:I've got like seven certifications in cannabis and I learned that kids with autism, some kids, have a specific protein in their bodies. I can't remember what it's called, but all I know is that they have a specific protein in their bodies that makes them have an adverse reaction to CBD and to this day if you give him any kind of CBD at all, he's almost violent. I mean you really have to get a lot of THC and counter it and just basically knock him out to reset him. Give him so much THC that it makes him go to sleep, because CBD it just pisses him off. It is not good for him. So I think that he's got that protein. It's never worked for him, except for that very first time. Ever since then it's been a nightmare and I stay away from it like the plague for him, and like indica if it's a straight heavy indica? My son does not get along with indica. He's an opposite reactor, basically. So Indica puts him through the roof. When it's supposed to put you In de couch, but no, it puts him through the roof and I mean he just goes wild and not in a fun, happy way. So we only do sativa or hybrids, and it has to be a sativa dominant hybrid. So yeah, that's my thing about him acting strange.
Speaker 1:I started to feel like, man... If we could just get to figure out how to get him some cannabis legally, because Wisconsin was nowhere near getting ready to legalize and I knew that here in Illinois it was already legal medically it had been for years already and just not in Wisconsin. No.
Speaker 1:So I knew, I could see on the horizon, the way that Jacob was taking my attention away from my job, our business was going to fail and I was doing everything I could to keep it afloat. But I lost too much time away from the phone because of having to deal with Jacob and his torture with me and it affected me mentally so badly that I just couldn't. I couldn't do it and I knew, I could see it was coming. I was going to have to shut this all down and we were going to have to move here and it was going to suck and I knew it and I hated it here already... one way of keeping myself a little bit optimistic about knowing I was going to end up here, at least for a while, is at least they have cannabis legal there. At least I can try to get him hooked up at some point, and see, because I really think that cannabis is going to change his life. That's to be continued another time I'll tell you more later.
Speaker 1:Okay, so then on, like March 9th, the teacher emails. I think this is about food. Hi, I wanted to check in and see if you are okay with Jacob going with my independent living skills class to the grocery store. On Tuesday. We will be using our grocery lists to get items to bake cookies. The other question I have is is it okay for him to eat the cookies when we are done? I have included a recipe of the cookies he picked out. If not, do you have a recipe that we can make that he could eat? She actually looked and found a from divascancookcom easy gluten-free chocolate chip cookies recipe, soft and chewy, and she says I was also wondering if I bought coconut oil, Can we use that to teach him how to fry an egg? We would not do that on the same day as the cookies.
Speaker 1:So now we're getting on the same page and school's almost over March. Yeah, so I mean it only took that long. But now we're starting to understand the importance of reading the things that I send about Jacob and his requirements. And yeah, cool, I replied. Thank you for checking with us. Yes, he may go to the store.
Speaker 1:As previously mentioned, he cannot eat butter or impure butter, substitutions or refined sugars. There are two recipe links below. Please do not use the one you sent us. If you cannot find organic chocolate chips, maybe you can sub raisins and please choose one of the recipes included below. We have never used either of these, but they seem easy for school. So I got coconut flour chocolate chip cookies from Detoxinistacom and then coconut flour cookies from and then coconut flour cookies from TheCoconutMama. com
Speaker 1:Coconut Mama, If you're into any of this stuff, I love her. She has an entire recipe book on just dairy-free ice cream, sugar-free ice cream. It's amazing, it's really good. I have it
Speaker 1:So then I also let them know, please be aware, that the maple syrup in that recipe means real, pure maple syrup, not flavored sugar syrup such as Aunt Jemima or Log Cabin, etc. Jacob is not to eat that type of syrup. It may be better to avoid showing him things like this unless the school is able to supply the pure ingredients that Jacob requires, because he gets hung up absolutely obsessed with stuff. I'm not telling the email that. I'm telling you that. That's why I would prefer that people don't put stuff in his face and tell him that this is what he's going to get and then not give it to him, because he's very particular with his memory and if you show him a blondie and then you give him a double fudge cookie, he's going to be pissed. Just tell him what he's going to get and then give it to him. Don't give him the wrong idea is all I'm trying to say.
Speaker 1:So she says that she has pure maple syrup, but they won't make it if they can't find the pure ingredients that we need. And then I let her know that the coconut flour does not need to be organic. I was just trying to make it easy. I would prefer that it is.
Speaker 1:But you know, the reason I like my flours and coffees and stuff to be organic and spices and stuff like that, in case you're not aware is that they're non-irradiated when you get them organic. I don't think that you know there's a lot of pesticides and herbicides being used to grow coconuts. So that's a big thing. You know that's a big concern with other types of foods. That's something to consider.
Speaker 1:Okay, then on March 19th she sent a message that says sorry, Jacob's lunch bag was left in the van. And I said do you have any idea why it was in the van and separate from the book bag itself? Was he disassembling his belongings? Because you know just why isn't it in his book bag, like it's supposed to be? He's only got one bag. He's not supposed to keep track of all his different things. They have to be in one bag. So she says I am not in the van, so I don't know. He had to have taken it out, since it was in there when he left. So you know, that was a little smarmy. I think she could have just said I don't know, but I personally put it in his bag when he left, so he maybe he took it out. I'm not in the van, I don't know.
Speaker 1:So there was a little thing, I guess he was doing with adaptive PE, and it sounds like I was going down there to observe. So the teacher says hi, I just wanted to let you know that I emailed the gym teacher person and he knows to expect you tomorrow at 135. Would you like Jacob to meet you in the office or meet you in the workout room? And I said I would prefer to observe Jacob quietly in the gym before joining him so that he does not know I'm there. Thank you for your help. She said okay, sounds good. We won't tell him that you are coming. We can try and get him down there a little early so that he does not see you. He does act a lot different when we're not around, Even back then. and
Speaker 1:I've told you that you know know, I think that we are holding him back just by being present. You that you know. I think that we are holding him back just by being present, and I wish there was a place where we felt that he would be happy, educated and taken care of and entertained, because I think that he would advance, develop better and that he would find talents that maybe we don't know he has. But he is so affected by the presence of his parents that he just stays in this state of stupor and it breaks my heart to see it. There are so many more stories of abuse and neglect to these kids in those group homes and stuff like that. I've actually never really heard a great group home story. I just hear all the horrible stuff and I guess that's to be expected, but it's really discouraging.
Speaker 1:And then a couple days later she says hi, I just want to let you know that Jacob was really upset in the van today. He was hitting the dashboard. Now he is crying and upset as well. I am not sure what has changed, but he has been really off since Monday. So I said there is some sort of solar flare occurrence this month. Maybe he's being affected by it. He's been off at home as well, I don't know, but he definitely is affected by all of these things that happen Barometric pressure, everything. It just it really affects him.
Speaker 1:I have a dear friend who has a young child with severe autism as well and she told me several years ago that her son had been acting a certain way for you know, a couple of days and my first question was do you have a storm front coming in? Because it sounds like storm front behavior and it was a winter storm. She had to look. She's like yes, we do have. It's a winter storm coming in. It's been coming in, been heading here for a while. I'm like, yeah, well, there you go, you know. So if you ever are wondering and you know, maybe just check the weather and see if your kid is one of those kids that's affected by this. And then there is this thing that says I found this on Amazon that might help Jacob determine if the water is safe to get into. So she found me a floating thermometer on Amazon.
Speaker 1:Okay, so I sent this to the teacher. Jacob has been getting bloody noses lately. He had one again this morning. Just a heads up. Also, I order our coconut flour from honeyvillecom. So in case you guys need coconut flour, that's who I used to order it from. And she says, okay, do you do anything special? When he gets a bloody nose, does he get upset? And I said he doesn't get upset. Sometimes he doesn't even tell us. We're working on making him tell us He'll just deal with it and come with just blood everywhere. We're like what is going on?
Speaker 1:He's very strange. He doesn't give you a like a prelude to throwing up either, like he'll just, he'll just, he'll be a pill and you won't know why. And he's just whiny, very whiny, high pitched whining and just very agitated. And then all of a sudden, you know he'll just be walking through the hallway bitching and just blah, just right, just everywhere. He doesn't bend over, he doesn't run for a bucket, he doesn't go in the bathroom, he doesn't try to stop it, he just lets it fly wherever he is.
Speaker 1:And he's the same way with burps. He'll just be talking and let a burp, just a burp, fall right out of him. It's the funniest thing really, because he doesn't know how to deal with it. You know, it's just, I don't know, it's just. I've never heard anyone burp like that. It's not a forced burp, it just comes out with his word that he's trying to use, whether it's a sound or whatever, it's just there. It is, you know, and that's how he throws up and that's how he gets bloody noses, Sometimes, That's how he poops. It's just, You know, just right there, just yeah, whatever. You know, just part of it, yeah, great.
Speaker 1:They sent me a picture or video of him making a coil pot in art and he's wearing a big long apron and he's working with clay and that's super cute. I'm going to try to post that. I'll try to post these pictures from the teacher of him working with clay and stuff on my Facebook and whatnot. Just because. O n
Speaker 1:April 6th she wrote Hi, jacob said his eyes hurt. I think he's tired and they are sore or it's allergies. Is there anything you would like me to do so with his eyes?
Speaker 1:He will, all day long just sit there, If no one notices him or doesn't say anything, he'll just sit there and stick his fingers in his eyes all day, just sit there and just you know, and then his eyes are just red and they got brown circles around him. He looks like a drug addict and he looks like he's been crying and all kinds of stuff and it's just no. He's just been sticking his fingers in his eyes all stupid day. So that's one thing. And then he's got another thing where he tries to. At first I thought he was grabbing his eyelashes, but it turns out that he was brushing his eyebrows down and trying to get them into his eyes. So I keep them trimmed, but he still. He tries to somehow get his eyebrow down inside of his eye and he'll do that for a while and then he'll start complaining and he'll say I can't see my eyes. I can't see my eyes and and he makes it seem like it's the end of the world and like he's sick or in pain or something. And I'm like your eyes are fine and you kind of have to be that way with him. You're fine, you can see fine, everything's fine, your eyes are fine, you know, otherwise he'll just obsess and he'll make a problem out of nothing. He's just really good at that.
Speaker 1:I have two other things I'm going to mention to you when this is all done, on April 11th. She says hi, I have rice chex cereal. Can Jacob have a small amount, around 1015, if he is hungry? She says, Mackenzie says he is having a hard time eating his lunch and it is taking a while. He does not seem to be as hungry as normal, but he is eating it. Well, I wonder if that's because you gave him cereal two hours beforehand, I don't know. So I said well, he had some bacon this morning. Maybe it hurt his stomach, I don't know.
Speaker 1:12 days later we got an email that says Hi, I just wanted to say goodbye to you and Jacob. I am so sad to hear that you are moving. I care a great deal for Jacob and I wish the best for him and your family. Please keep in touch and let his new teachers know that I am happy to talk with them and assist in any way possible. Thank you for letting me get to know your incredible son. He is wonderful in so many ways. No-transcript
Speaker 1:Now I want to mention a couple things here that did not get mentioned in any of this, but at one point during school and during this particular season of school, he was accused of touching the teacher's breasts and again, that really upset me. You know that he was accused of being a sexual person before during in the autism group and I swear to God he's not. He's not. The thing about him is that he knows where your heart is at and when he flaps and stuff he'll say, oh, my heart, you know, because it gets his heart racing and he says heart attack and stuff like that.
Speaker 1:But the way that he grew up was when he would need to be calmed down or reassured or just told that we love him. His dad would always put his hand on Jacob's chest, on his heart, and we would show him this is your heart and that was just a way that we educated him on where certain parts of your body are, where certain parts of your body are, you know, when he thinks you're sad, he'll go up to you and he'll say, are you sad? And he'll put his hand on your chest. He's looking for your heart. He doesn't mean anything else except to heal your heart and that's how he's been taught and it makes him feel good, so he thinks that it makes others feel good as well, and he didn't realize that some people are going to not want touch on their chest.
Speaker 1:But this woman's well-endowed and she accused my son of grabbing her tits and that's not What was going on, and I mean she's grandma age anyway. It wasn't. It wasn't, you know, and it just offended me because my boy is sweet and loving when he's not psycho and it's. That's not what he was doing. He's been accused of that many times and I guess that's our fault because we teach him where the heart is at. You know, I don't know. I just I really hate that that people sexualize my son when he's not. He's not that person and he's never been that person.
Speaker 1:The other thing I want to mention is I don't know if I mentioned this before, since I'm not sure. I'm just going to tell you again I I don't think that I did, but perhaps. Anyway, it's still a cute story I, during these years like 15 through 17, I was trying to get him to be more independent on self-care, toiletries and just stuff like that. So brushing your teeth, washing your face, washing your hands which is still an ongoing battle, all of these things I still have to tell him how to brush his teeth. You know, it's just. You know it's never going to get better unless he's away from us. I really think so.
Speaker 1:Anyhow, one thing was that I wanted him to be able to shave himself, because I am not, I'm not comfortable shaving a man's face. I've never done it and I didn't want to do it. I became nervous because his half sister took it upon herself to shave his peach fuzz and it wasn't really that grown in and he was like 15, I think, and I, you know I didn't think that was very cool, because it's not your kid and you haven't seen him in a long time, and you're just going to go into the bath and take it upon yourself to shave my son's face. It's kind of fucked up, I don't. I just I just think that was overstepping. And then I you know, everyone believes that if you once you start shaving now you got to shave it's going to come back Now. Now you started something. You know you could have left it alone, but you started this now.
Speaker 1:So I became a little bit, you know, conscious of hey, this is, this is going to be a thing. I bought a Norelco razor And it seemed really safe to me and I ran it by his dad and we both thought, yeah, that would be really nice because he's, you know, he's 15, 16, 17. It's time You're big. It's not easy to take care of a grown person easy to take care of a grown person. So we taught him how to use it and what it feels like, and it was a whole introductory thing we did with him. And one day we asked him if he would please shave his chin and his lip and we showed him exactly where to do it and he came downstairs in no time with everything shaved. I think it was like summer or something, because I think he had super short hair. I had just given him a buzz cut too, I think, and I'm gonna have to post these pictures.
Speaker 1:It was horrific at first, but it became really funny and endearing because he came down and, oh, it was awful, he had no eyebrows, and when you got close to him, you could see that he had just like closed to hopefully closed his eyes. I think maybe he had him open because he loves looking at himself and I was like, oh shit, he almost shaved his eyeballs, you know, I think that maybe that's probably what he was doing, and you could see, though, his eyelashes had chunks taken out of them. Some of them were long and some of them were chopped off, and it was awful, he shaved everything he could. And he came down giggling and happy and he just he was so happy with himself and we were horrified, like no, oh no, this can never work, this will never happen again. Fuck, I'm going to shave his face for the rest of my life. This sucks, please don't do this.
Speaker 1:You know and we were, we didn't know what to do, we didn't know how to react, and then we had to take him out in public, of course, because he goes grocery, shopping and stuff. So it was shortly after that he's nothing had started growing back yet, and I had him in the truck we were all together, I believe and we got out and he, instantly, he gets out and he hunches over, he raises his shoulder up and hunches down and starts limp like drag limping, you know, limping and dragging his foot like Quasimodo and before we could even recognize what he was doing, he assumed this posture and this walk and he says Quasimodo, and it was perfect. It was so cute. I would have let him stay shaved all the time. It was adorable. I was like, well, okay, I could do this, he could shave, it's fine. You know how freaking cute that was awesome. He loves that movie. So that was our attempt at helping him be independent and getting his shaving done. And we have never tried since. But it's on the list. We're going to try. We're going to order another Norelco, because now his dad is the one shaving him and it's actually really hard for his dad to shave him. It hurts his back. We'll see how it goes.
Speaker 1:And I did want to share another really cool story. A couple of weeks ago we had our family day and we were just out driving around. We didn't know, like I don't know, somehow my spouse was driving and he wasn't. It wasn't like a plan, we were just driving around and he had this idea that we were going to go over here and get off on this exit and go check out this fishing hole. Well, I didn't know that and I would have helped him look for the exit had I known, but I didn't know. I was just enjoying the ride and all of a sudden my spouse was like I think I missed my exit and we ended up in a like a college town about 45 minutes from here. I knew we were coming up on it and I had just seen on Instagram something about a little like a fun little landmark there and all this cool stuff that you can do at this place, and so I was like hey, I think we're right over here by this place. Why don't we look for it? So I looked and we found the directions to it, and it's one of those places that doesn't exist, like the map will tell you go here, go here, and there it is, but it's not there. And we didn't find it until we were on our way out of town and we had given up, and then it was nowhere near where the map said it was. It was over here, but then it wasn't what it said it was, so it was just a big goose chase.
Speaker 1:Anyway, the kid is in the back for the whole time. I mean, he's just, you know, being good, enjoying the ride, and we're heading home and it's been over 90 minutes that we've been in the car, and so he says something about taking off his shoes. You know, shoes off, shoes off. He says. I said, yeah, buddy, you could take your shoes off. And we had gone to Walmart before we took this big road trip. So we bought him a few tank tops from you know Hanes, tank tops in the like a 10 pack or whatever. And they're rolled up in there, nice and neat, each one individually. And I asked him do you want to lay down? He says yes. So I tried to clear off the seat.
Speaker 1:Now, the thing about our son is that he does not know how to make himself comfortable. He doesn't understand it at all. I've been teaching him this forever. I am all about being comfortable and I just don't. I don't understand why he doesn't understand. You know, it's the same drill all the time. Why can't you do it by now? Usually he'll have a pillow and blankets and all that stuff in the car and he still can't figure it out. I don't understand it. So I always have to, you know, get out of my seat, turn around, get him situated, and it's a big deal, it's quite a production. I did bare minimum because we didn't have a lot of stuff.
Speaker 1:So I got him to understand that no, I don't want you to lay your head on the middle armrest, I want you to put the armrest away, put it in there in the seat. That's what he thought he was just going to hunch forward and put his head on the stupid armrest? No, so finally he understands we're not going to do that. And he puts the armrest away and then I'm trying to explain to him, to lay down the way he always does. He's been doing this for 20 years. I don't get it. I don't understand why he doesn't get it. So, anyway, I'm trying to explain to him. I want him to lay, put his feet and legs up on the seat and do the thing. You know, even if you have to put your him on my head. I'm like put them right here, do you understand? And he's like, yeah, so he didn't really understand, but I was able to reach around and help him and he kind of got it.
Speaker 1:So together we got him in the right space and he had picked where he wanted his head on the door and he had those behind him and they looked pretty safe and secure. And I was like are you good? He's like, yeah, I'm good. I said okay. So I turned around and a couple seconds at least went by.
Speaker 1:It was nice and quiet in the car and then all of a sudden, out of the blue, he says so comfortable, shannon doll. I said what? And he said, oh, sorry, nevermind. And I'm like did you say you're comfortable? He goes so comfortable, shannon doll. I was like, oh my gosh, that's a good word, buddy, good, awesome. That was so great. He's never said that word ever that I've ever heard. Maybe he says it in private, I don't know, but I have never heard him say that word. I've never heard him use it in a sentence. I word, I've never heard him use it in a sentence. I've never heard him indicate in any way that he was so comfortable and that just made my heart so happy. That was so awesome. I didn't even know that he understood the meaning of comfort. So that was huge and I've been wanting to share that for a couple of weeks now, but I held it back because I had the other one last week and now I don't know.
Speaker 1:Hopefully I can grab another good story out for the next time. I'm going to be releasing the full video that goes with the audio promoting my safer lifestyles blueprint very soon. I have to do all the design myself and it's a little bit difficult with everything else I've got going on, but I'm also going to make another copy. I'm going to just have it out there. So I hope that you will spread the news. Share the podcast, share that episode if you don't mind, share all of my episodes, anything you can do, and, of course, I always love to hear from you.
Speaker 1:In my next episode I'm going to start talking about our transition from Wisconsin to Illinois, how we talked to our son about it, how we tried to condition him for it and the short-term effects that it had on him and how we moved forward from there. There's a lot of juicy stuff coming up in the next few months with these episodes. It got real interesting. Let's just say that. On another note, it is the beginning of August now and that means school is starting soon. So if you have a kiddo in school, I hope that these emails have shed some light on some of the things that may be going back and forth or may be happening behind the scenes.
Speaker 1:Remember to get your IEPs scheduled ASAP and as often as possible as well.
Speaker 1:Do not take no for an answer. Make sure they are honoring your child's needs, make sure they are providing your child with an appropriate education, and try to find yourself a parent advocate, and anyone who works with your child outside of the school may be interested in attending your IEPs. And the more people that you have on your side of the table at these IEP meetings, the easier it is for you as a parent, because these other people that work with your child have a different perspective and guaranteed your child is different with them than with you, and those people know more about your child's rights than most parents do. That's something to keep in mind. I mean, it's their job. You know it's kind of our jobs too as parents, but we have the parenting to do and we work and we have all kinds of stuff. So try to rely on the professionals that are on your team and see if that helps you make a better school year for your child. I hope you enjoy the rest of your summer. Hang in there, you're a superhero.